Journey into the bubble

A difficult week

2011-04-11T02:50:00.000-07:00

A difficult week. I had my blood counts taken on Tuesday but was too ill to go in to see Dr Mead on Wednesday. He told me that although the new chemo had reduced the swelling it had sent my blood counts through the floor – like they were when I went into intensive care. He says I should not visit him in hospital but the nurses have been coming in most days and monitoring my situation. My greatest fear is not being able to breathe so I am using oxygen when I can.

Then on Thursday we had a message from the hospital that my mother was seriously ill. Fortunately, by late morning the emergency team had left and she is making some progress. Ray saw her yesterday and she will be staying in hospital for a few more days.

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My aunt and cousin went to see my mother yesterday and she was in good spirits and so happy to see them. She seems to be on the mend. I am possibly a little better but so very weak. I am not sleeping at all well or eating properly.

Let’s seem what the week lies ahead.

Mothering Sunday

2011-04-04T09:43:00.000-07:00

By Saturday evening my mother was back in hospital with the same problems as before. When I rang this morning the medical staff can’t seem to make any commitment about doing anything; they just wait until the worst of the pain has gone, then send her back to the rest home. I had words with the sister this morning about this but there is perhaps a hidden age agenda in all this. We are all finding the lack of action very stressful.

Anna has been staying with Dave and his parents in a village outside Marlborough while she has been attending a course. As she was then returning to North Wales it made more sense for us to go to her. We supplied the picnic basket which is always ready with everything we need, Anna supplied all the food and Dave’s parents supplied a table and chairs. Even though it was warm I sat in the front of the car. Anna had chosen lovely specialities which she knew all three of us would really like.

We found a lovely location in the Savernake Forest where, with the benefit of the Jeep, we were able to go off road. Many of the trees are hundreds of years old and the sunlight on the new leaf and spring flowers was beautiful. We had a really memorable day.

I feel sad that I wasn’t able to see my mother in person on Mothering Sunday and I missed Jonathan but, of course, we are receiving regular messages and also some photographs.

I have very little energy at the moment and had visits from two nurses. At the moment most of it is talk; we shall have to see how effective the palliative care really can be now.

Steering clear of the shops

2011-04-02T08:33:00.000-07:00

Yesterday I was very tired but the day was cheered up by a visit from Margaret. She came to give me communion and we had a really good, long chat afterwards.

Raymond has been running an advanced portraiture course over two days, yesterday and today. He doesn’t normally run two courses quite so close together so he is a little tired. We have a few things to do before 9.30 when the session starts as I am not sure of the wisdom of mixing with people in shops when I have fluid on my lung which could perhaps turn to pneumonia.

I had hoped to see my mother today; I can’t visit her at St Elizabeth’s so she usually comes here these days. I didn’t think I would be strong enough to help her in and out of the Jeep so I thought a taxi would be the answer. Unfortunately, she is feeling a little sick which I assume is all part of the trouble that they are planning to alleviate by the procedure on Tuesday.

We had another update from Jonathan in which he explained that he and his team are scouting for locations suitable for filming in Chile. It is great being able to hear from him with the immediacy of modern communications.

Ray’s course is just drawing to a close and it seems to have been successful. I got out the picnic basket ready for tomorrow as we hope to go to Marlborough to see Anna. As I can’t get to the shops she is buying all the food so it won’t just be pork pies as it might be if left to Raymond. I am looking forward to seeing her but I shall miss my son on Mothering Sunday.

Practical palliative care

2011-04-01T02:30:00.000-07:00

Dr M faxed a letter to my GP, Dr H, to tell her that I had been put on this new drug which we hope will work but also asking her to initiate palliative care support. She immediately telephoned us and came round to our house that morning. Dr H has already been to see us before but it is not until you really need a service that you can take it all in. We talked about the sort of assistance we thought I would need and she is both helpful and sympathetic.

I was aware that I would probably have a lot of help in managing pain and sickness but I needed to explain my phobia about not being able to breathe. When I was very young, another child put two cushions over my face and sat on them so that I nearly suffocated. Difficulties with breathing were further compounded when I was a child as I had adenoids and lots of catarrh. We were absolutely amazed though to receive a call from a medical oxygen supplier and by 3.00 p.m. a cabinet was installed on the upstairs landing with sufficient tubing so that I shall have access to oxygen wherever I am when I come to need it.

By late afternoon/early evening I began to feel really ill and had to lie down in bed which is unusual for me. As I have no wish to return to hospital, unless it is something which is necessary for a doctor to treat, we have to deal with this situation ourselves. Fortunately, I am much better today but it shows us the need to have met the palliative team and know how and when they can help.

This morning I have spoken on the telephone to one of the nurses on the palliative care team and she will be seeing us on Monday. I really want Raymond to know that he has some support on which he can call together with advice, as otherwise it is a difficult situation to be in.

Making life difficult

2011-03-31T05:24:00.000-07:00

My mother is out of hospital and for the second time she has been sent out without any discharge papers. This makes it very difficult for St Elizabeth’s. Fortunately, Barbara who runs the home is not only a former nurse but very much the champion of her elderly residents. My mother is supposed to have a procedure on Tuesday to remove the gall stones and Barbara will be looking out for the appropriate appointment .

Yesterday we saw Dr M who broke his holiday to see one other patient and myself. Mark had told him that my breathing was difficult so I had a chest x-ray before seeing him. I have some fluid on one of my lungs which is the cause of my shortage of breath. Dr M has managed to persuade BUPA to let him prescribe the otherwise unlicensed drug which is good of them as it is very expensive.

The oncology pharmacy made things very difficult. They made us wait an hour and then they decided that Dr M should have supplied them with a form (which I had already signed) about any difficulties with the drug. We had talked it through thoroughly and although there are no guarantees, it seemed like a good drug to try. So Ray ran upstairs to get the form but quite naturally Dr M had gone by then. Meanwhile I was told that they didn’t have the drug in stock whereas Dr M had told us he had already checked. They told us it would take two days but Ray said we didn’t have two days; we had to act immediately.

Then we were told that Dr M should have filled in a form for the drug manufacturers so Ray went upstairs to get this filled in by another doctor. The doctor was not pleased with the pharmacy’s intransigence. By this time I was quite tearful and all the other women in the pharmacy waiting room were comforting me or having a go at the pharmacists. We all have a form of cancer or relatives with cancer so I am afraid it is natural.

Eventually, very late in the day, the drug was “discovered” on the shelf and we could make our way home. We were both very tired as we had expended a lot of unnecessary emotion.

However, the good news is that Jonathan has landed in Chile. He is safe and well and has seen something of Santiago.

A day of uncertainty

2011-03-29T11:17:00.000-07:00

Today is a day of uncertainty. I am very short of breath and Mark thinks I am anaemic as all the signs point to this. However, I have not heard from Dr M and am not due to visit the hospital until 2.45 tomorrow afternoon. Normally if I require a transfusion, I am telephoned in advance and I go in early.

I know that Dr M has been in contact with BUPA about a drug which is being used in America but in this country is not yet used for lymphoma. It may not even be licensed yet; I am not sure. He sent a report to them and asked me to add my request to the insurers who are considering whether to give approval. Certainly my neck is very swollen on both sides and nothing is working.

We need to go to the hospital before my appointment in order to find out about my mother. I understand that the endoscopy which is proposed goes deeper than the normal one which many of us have had and this may be the reason why they decided against the treatment the first time around. Unfortunately, they didn’t talk to us; they just left her hanging around waiting. We are in a similar situation again in that she has returned to hospital with the same problems as before and is waiting to be fitted in for the procedure. However, we need to talk to the medical staff to find out exactly what they plan to do, the risks of treatment and the risks of doing nothing. Very importantly, we need to know whether all this has been discussed fully with my mother.

As I can’t visit the ward, hopefully Raymond can see her tomorrow before or after I see the oncologist and he will be armed with questions for the staff as well as for my mother to see. She cannot keep being discharged only for the same problems to recur which have not been investigated.

We so much enjoyed having Jonathan and Anna with us at the weekend and are both really missing them.

A happy time in the end

2011-03-28T09:55:00.000-07:00

I’m not sure whether this tablet chemo is going to work. My neck is as large as ever on the left side and is now enlarging on the other side as well. Dr M has been in touch with BUPA to ask about a new drug but they have probably refused on grounds of cost so Ray and I have to ring the up too. The problem is that at this stage even quite good drugs are not very effective.

It has been lovely having Anna here as we’ve not seen her for little while but I had hoped Jonathan would be here for the whole weekend too. However, he has been working with people who have all had colds or infections of some kind and he was just beginning to feel the early signs. So he didn’t come here on Friday and instead dosed himself up with Vick’s First Defence. I was so sorry he couldn’t come with us to Beaulieu but appreciate his thoughtfulness.

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On Sunday Jonathan came down from London and was feeling perfectly well. It was a shame he hadn’t been able to come earlier and he and Anna really enjoyed meeting up again as it had been some time since they had seen each other. I had suggested that as he only had a few hours, we would go to a local hotel and have lunch there with coffee afterwards so that there was no time spent cooking and washing up. As Sunday is often a day when families go out for lunch it had to be one where it wouldn’t be too crowded. Although it is an expensive hotel, the roast beef we all ordered was dreadful and the meals were very dry.

Normally this would really have annoyed me, but as Jonathan and Anna said, they are used to good food and we were all so happy that it just became a source of amusement. Afterwards we went to Jessop’s so Jonathan could choose a camera to take to Chile as we all want to see the pictures.

Unfortunately, Raymond was still running the course, so although he could wish Jonathan a safe trip, he couldn’t spend any time with him. It could so easily have been a sad time, as Jonathan is away for a few weeks, but it wasn’t. He is off on an exciting trip and it is a wonderful opportunity. All our love goes with him.

The sun is a bonus

2011-03-26T11:38:00.000-07:00

My mother is back in hospital again with the same problem she had just over a week ago. She’s not settled on any particular ward yet but fortunately, the tests she has already had mean that we don’t have to worry about it being anything too serious but she has been in some pain so I would like them to carry out the appropriate investigations rather than keeping her hanging around.

I know she wasn’t in any pain last Thursday which is the reason given to me for why the endoscopy was not carried out but obviously if she had been in pain there was the potential for that to return. St Elizabeth’s told me that they had thought the procedure was (here I am guessing because I’m getting this third hand so I don’t know the word used) possibly “risky” for someone of 97. As we were all given different stories about each aspect of her stay in hospital before, I’m not sure who will be given the truth about why the endoscopy was not carried out. I only know I was rather sceptical as I didn’t think that the reason for her illness had disappeared or been discovered. So we are back to square one again and must wait until she is transferred to a ward where treatment can be carried out.

I was complaining yesterday that my camera could not pick up the vibrant yellow of the celandines but today I forgot to take it with me and the hotel garden was really beautiful. It had changed dramatically since I was there last two weeks ago. The garden is tiered into levels sloping up from the restaurant although mainly the actual stonework of the levels seems to disappear with all the new leaf and blossom, so you just see the plants growing at different heights.

Ray’s course has been going well. Today when they have been working largely outside, the sun was a real bonus and the temperatures have been warm which is helpful for the models. It has meant there has been plenty of light for the photographs; sometimes in winter the light has effectively gone by 3.30 p.m.

So far so good

2011-03-25T05:45:00.000-07:00

Today is another lovely sunny day although we have been forecast a colder weekend so I hope we can make the most of it. We had two friends visiting us last evening and although I became tired it was relaxing and enjoyable. I awoke in the night for about an hour so I made up for it by having a short sleep this morning.

Ray is running the course this weekend and so far it seems to be going well. I just have to look out some dresses for tomorrow as I hope to be out to lunch before the afternoon session starts. I just hope the models anticipate possible problems by wearing light coloured underwear and high heels. Otherwise everything should run itself.

I have been taking some photographs of the garden but although my camera is good for snaps it has totally lost the vibrant colour of the celandines which is a pity. Jonathan gave me a card reader as the Mac doesn’t have a slot for a memory card and I can’t be bothered to link up the camera to the computer. It means I can upload my shots much quicker which is great. I’d just like to log the changes in the garden which occur at this time of year.

Starsky has been enjoying some hours in the garden in the sun and skips around the run so it is obviously a pleasure to him. By now my mother should be home so hopefully we shall get to see her this weekend. Anna is already travelling down from Wrexham although the journey will take some hours and Jonathan will come down this evening. Now I must survey the scene to determine what I can give them to eat. I have resolved to do very little cooking so as not to tire myself out and the Waitrose delivery will aid me in that respect. So far so good.

The world of medicine

2011-03-24T06:29:00.000-07:00

Raymond came back from the chemist’s with Vick’s First Defence which my cousin had recommended for colds. I took a dose straightaway and then stayed awake long enough to be able to take a second dose. I had a strange cold sweat throughout the night but Raymond suggested that this might have been the body’s reactions in trying to combat the infection. I certainly feel a lot better this morning and started on the first dose of my tablet chemotherapy.

I feel I need a degree in chemistry to balance all these tablets. Some have to be taken an hour before food, some with food, some after, some not in conjunction with milk, you name it there’s a caveat somewhere. However, like all cancer sufferers, we learn to juggle the pill-taking and find a way of remembering what to take and when.

Raymond has been preparing for the course which starts tomorrow. We have a good variety of models this weekend and the weather is promising. It will give Raymond a chance to be with new people and he enjoys teaching the students and seeing them make progress.

We have had very warm and sunny weather for the past few days and Raymond was actually out watering the plants in the front garden which is almost unheard of normally at this time of year. The back garden is now looking less like a neglected wilderness and three trees which were dead have been taken down. More trees grow which means the garden is constantly changing but also shrubs have been cut back and some of the holly removed to give those trees and shrubs we do want, a chance to flourish. I am finding it a lot less stressful than when I had to look at the garden becoming seriously overgrown and knowing I could do nothing to improve things.

I shall ring up the hospital in a minute to find out how my mother is, what they have done and what they plan to do. No doubt it will be a different story from yesterday but we may be able to see a pattern emerging. Fortunately, she is not a nervous patient but it must be difficult for her as she is so deaf and not everyone takes the trouble to communicate with her properly.

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I have just had a phone call from the hospital. They have decided not to do the endoscopy after all as my mother is not experiencing any pain. They think it might be riskier to remove the stent at this time. This decision has been arrived at after she has spent nearly a week in hospital!

Treatment day

2011-03-23T11:37:00.000-07:00

Today we arrived at the General Hospital at 9.45 ready for my treatment at 10.00. I was not sure whether I was having a transfusion of platelets or whether there had been a change of mind so that I would be having intravenous chemotherapy rather than in tablet form as we had agreed. The room reserved was not available so I went into the day ward to have a special injection to boost my white cells. My treatment, i.e. pentamidine, was booked for 2.30 p.m. and my appointment with Dr M was 1.20 p.m. so we had about three and a half hours to kill.

They were obviously all in a complete state of chaos but fortunately, we had written off today as being one which would be entirely spent at the hospital so it was not worth grieving about. We took some sandwiches over to the Macmillan Centre which was unusually quiet. The staff are very welcoming, made us coffee, provided us with biscuits and plates for our sandwiches. It is a very comfortable place to spend time and I fell asleep in a chair which I later found was a recliner when one of the staff put it into position for me.

After seeing Dr M I went to the pentamidine room to breath in a substance which helps my immune system. As I can’t wander around the hospital, Raymond went up to see my mother to get the latest news. She is having an endoscopy tomorrow to check whether a stent near her gall bladder is blocked or needs replacing. She will either return home tomorrow as Raymond was told, or Friday as I was told on the telephone. At all events she is in good spirits and was up and dressed in day clothes which is a sure sign that in herself she is feeling well.

I have a cold and I am far from happy. Of course, there are cold germs around us all the time but all our friends and family have been so considerate about visiting if they are a touch unwell – not so the lady at the weekend with the “bit of a cold”. I am hoping that the treatments I have had today will help me to shake it off but Raymond has gone to the chemist to fetch a few things I may need. Of course, everything has to be checked for its compatibility with my other tablets so zinc is out.

We are always tired after a day at the hospital so we plan to relax and watch a DVD. Stress will not help my cold I know.

Ray's birthday

2011-03-22T10:19:00.000-07:00

It’s Raymond’s birthday today and as well as cards he had messages from France and Australia. He seems pleased with all his presents and it is a bright sunny day. I know he loves having a birthday in spring because it is such a lovely season.

I wasn’t feeling well in the night and Ray had to help me out of the bath this morning and I continued to feel unwell during the first part of the morning but then suddenly seemed to brighten up and stopped feeling sick. I was so relieved as we’d planned to go out for lunch. I had my blood taken and then we went down to Gunwharf Quays where we looked around. It was very quiet compared to what it is like most weekends. We then had a very good lunch at Loch Fyne. On our return I had a lie down as I was tired during which time two friends came to see Raymond.

Dr M rang at about 4.00 p.m. but the blood results hadn’t appeared on his screen which was unusual as they are normally processed very quickly. He was considering what treatment I should have and he tends to think aloud. I confirmed I am not happy with anything that would make the neuropathy any worse. When you lose the feeling in your feet and hands it can be quite dangerous, it becomes impossible to write or use a computer, dressing is enormously difficult and when I had neuropathy with the CHOP-R chemo I had several bad falls as I couldn’t feel where I was placing my feet.

At all events I think I am having some sort of treatment tomorrow as Dr M’s assistant rang to say that a room has been booked so it sounds as if it is either a platelets transfusion or some sort of intravenous chemo. As I shall be in hospital all day, I shall try to visit my mother. She was supposed to be discharged on Sunday and each day it is a different story and different treatments are likely to be given. At the moment she is likely to have gallstones removed on Thursday and be discharged on Friday. Fortunately, she is in good spirits and she has the strength of character to cope with the ever-changing situation.

Conserving energy

2011-03-21T04:08:00.000-07:00

I was enjoying relaxing in front of the fire yesterday afternoon when someone came to the door. She wanted to see Raymond and, as I know her slightly, I invited her in at which point she said that she had “a bit of a cold”. I couldn’t believe anyone would come to our house with a cold as everyone knows or has been told how dangerous it is for me. Actually it is not only my contact with anyone who has a cold or infection, but Raymond is at risk, as if he succumbs we really do have problems.

I rose early this morning as the nurse was coming and she took me at my word and came at 8.45 a.m. which leaves the rest of the day free. I am quite tired and beginning to feel a little sick so I am not sure whether the lymphoma is becoming more active in my stomach but it is not serious yet. I had some paperwork to do and I decided to complete it in the morning before I became too tired as then it takes twice as long.

At first this morning it was cloudy and misty but now there has been a big improvement with a cloudless blue sky and sun, even if it is not that warm. It is perfect spring weather. I particularly love the yellow flowers of spring and in the village there are several quite large mimosa trees which always remind me of my first visit to Italy as a young teenager.

We have two friends from the village visiting us this evening so I shall try to rest for the better part of the day. I shall enjoy seeing them as they are easy to talk to and don’t tire me out. I am now very particular about who visits as some people really lift my spirits whilst others are draining. It takes quite a lot of energy to cope with this illness but those closest to me really understand and encourage me to rest.

Time to relax

2011-03-20T07:02:00.000-07:00

On Friday afternoon we received a message that my mother had been feeling unwell and was going into the General Hospital for investigations. At first I was rather alarmed but St Elizabeth’s and the ward sister at the General reassured me that she was stable and the initial assessment had not found anything wrong but blood tests had been taken and she would have further assessment the following day. I was also told that she was on really good form and had everyone in stitches – my mother down to a T.

Anna has usually been a tower of strength when my mother has had to visit or stay in hospital and she suggested items which might be needed so Ray and I did some shopping for her. As I couldn’t go onto the ward myself, Jonathan and Ray took in a bag of things my mother might require along with a note from me. Jonathan was very good and recorded some videos of her relaying messages to me. Both he and Ray said that she was on really good form, nothing untoward had been found and she was likely to be discharged on the following day. It was such a relief but I was sad I hadn’t been able to see her.

As Ray’s birthday is on Tuesday, we decided to go out for a meal to celebrate although we really missed Anna being with us. We had a really good evening with excellent food in a happy atmosphere.

Today was much colder and cloudier. Each week it is a challenge for Jonathan to know what the time of the train is going to be for his return to London and from which station it will leave. Sometimes it is Parkway, sometimes Fareham and today Eastleigh although the train advertised on the internet was not actually running. He had to catch a train half an hour later which means he has less time to spend at home with Josie. Obviously as they work all week, they do like to have some time at the weekends so we were a bit annoyed that the rail service is so unreliable.

After this Ray and I went to the Meon Valley and had a really good lunch at the Buck’s Head. The dining room was warmed by a fire and we both felt quite mellow. Then it was off home. On arrival Ray lit a fire and we settled down to relax for the rest of the day.

I can't explain how you are alive, but you are!

2011-03-18T02:43:00.000-07:00

We were still talking yesterday about our meeting with Dr M at the hospital the day before. He was very ebullient and smilingly said, “I can’t explain how you are still alive, but you are.” It shows us that not everything is cut and dried but encourages us to make the most of every day.

Yesterday was fine although not warm and we went for a drive through the New Forest to Lymington. If you are not familiar with the area you might think we drove through mile after mile of roads lined with conifers. In fact the forest is composed of heathland, hardwoods, some conifers and lawns. The latter are a real natural feature and I suppose occur because of the high number of grazing animals such as cows, ponies, and donkeys which roam in the forest.

Although Lymington is only just along the coast from us, it was degrees colder; we are sheltered by the Isle of Wight and our weather is usually milder. After choosing a watch for Raymond’s birthday we drove to Beaulieu where we had lunch. We have to be careful about our choice of venue so as to avoid anywhere crowded. Our table was right by the window and we overlooked a lovely garden full of spring flowers.

There is so much to see at the moment in the countryside and gardens with catkins, pussywillow, blackthorn and all the ornamental flowering trees and shrubs in the gardens. Raymond has a few calls to make today but I am staying in, partly because I have to wait until the nurse comes which is sure to coincide with a delivery from Waitrose. It is the first time I have used them for online home shopping but I am hoping that it will make cooking and catering a little easier if I am unwell.

We had been planning to have a weekend with visits from Jonathan and Anna but Anna has a cold and will not come while she is infectious. We are all disappointed as we wanted to have a pre-celebration of Raymond’s birthday but she is being careful for my sake so we hope we shall see her the following weekend.

Feeling brighter

2011-03-17T01:53:00.000-07:00

We set off for the hospital quite early and there was a mist over Southampton Water which shrouded Fawley and it looked quite picturesque with a fishing trawler and geese gathering on the shoreline. We arrived at 9.30 a.m. to be told that the blood would arrive at 10.00 a.m. However, the porter bringing the blood got lost as I was having the transfusion in a comparatively new wing. One of the nurses was sent out as a search party and it eventually arrived at 10.30 a.m. and the procedure finished at 2.30 p.m.

This meant that we had to have lunch during the transfusion so sandwiches and drinks were sent for and Dr M had to come to see me as I would have been too late for my appointment. He was on good form as the blood counts had risen again. It is difficult to believe that when they dropped 3 weeks ago and I felt ill, he was all for giving me no more treatment and putting me in the hands of my GP.

The radiotherapy has not done much so far as its effectiveness along with some of the chemo drugs grows less and less. However, we agreed to have an appointment next week to review my neck and possibly I shall have some oral chemotherapy i.e. in tablet form. Whatever is given will be mild as no one wants to have me back in intensive care. No treatment at the moment has any guarantee but they are worth trying since the internal lymphoma is not yet too uncomfortable but the swollen neck really needs some remedy. Somehow knowing that further options are available boosted both of us and Dr M’s enthusiasm was infectious.

By the evening I was already a little brighter, whether as a result of our meeting with Dr M or the transfusion. I had quite a reasonable night although we both woke very early. The main effects of the transfusion should be more apparent today and as there are no medical appointments today we plan to go to the New Forest and Lymington. It has been wonderful seeing all the blossom in the parks and gardens during the last week and we should see plenty of changes in the forest compared to our last visit.

Feeling tired

2011-03-16T00:24:00.000-07:00

I didn’t have a bad night’s sleep – for me that is. I average about four and a half hours even with temazepam. I read until I am really tired and I wake up quite early but the quality of sleep I am having is better than before and I welcome not having awful dreams.

Raymond gets up quite early and always brings me a drink and my breakfast in bed. I take my time and watch breakfast television which is probably the most I see in a day as I tend to read. Invariably we have a visit from one of the nurses and I am glad they come early as that leaves the rest of the day free, although this week I think it will entail more than one visit to hospital.

Mark came this morning to take my blood. He always does the usual observations and said that my heart was racing and my blood pressure low even for me. This is probably why I have been feeling quite light-headed for the past few days.

I am continuing my blog on Wednesday. I became very tired yesterday. We had a visit from two friends we first met at the Marsden. Bob had a bone marrow transplant at the same time as I did and we compare notes. It was lovely seeing them but I was exhausted afterwards.

This morning we are going to the General Hospital early as Dr M has arranged blood transfusions for me. Hopefully I shall have a little more energy afterwards but at the moment I am not feeling well.

New life all around us

2011-03-14T03:31:00.000-07:00

I don’t know whether it is all part of the side-effects of radiotherapy but I am incredibly tired. Yesterday I slept in the afternoon for one to two hours which is very unusual for me. I have never really needed to nap and even when I am tired, the moment I try to sleep during the day, my mind becomes suddenly very active.

At all events, I like to get the tasks I really have to do, carried out in the morning. The various visits of the nurses also take place fairly early in the morning for the same reason. For the district nurses this is quite convenient as I can be their first port of call. It also means I get up and dressed rather than lazing in bed which I’m not really used to. When I look back to my working years, like a lot of women, I used to rise very early. I enjoyed avoiding the worst of the traffic and arriving early meant a more leisurely start to the morning as I could ensure everything was prepared for the day ahead but there was always time for tea and the crossword. So basically I am a morning person and retirement and illness haven’t changed that.

At the moment even brief forays out in the car are interesting because I am looking at all the signs of spring. One of the most cost-effective ways in which our local Council has spent our community charge, has been the planting of bulbs which it did a few years ago where there was land available along the roadsides. Outside our house are hundreds of narcissi and elsewhere there have been lovely crocuses which are a pleasure to all of us.

I have enjoyed seeing the blackthorn blossom encrusting the hedgerows and the subtle pink of the almond blossom in people’s gardens. Above all, I think of yellow as the colour of spring and, apart from the daffodils, there are forsythia and mahonia flowers in our garden. Raymond is a bit downhearted that a number of the daffodils he planted last year have not seemed to bloom this year. On closer inspection you can see that the leaves have come up, but the deer have been in the front garden enjoying the freshness of the young shoots. I am not sure whether the tulips will survive for the same reason. I am especially fond of yellow tulips and Jola sent me some which were a deep chrome yellow.

We haven’t seen the vixen lately but we were sure when we saw her last that she was pregnant. We are really looking forward to her bringing her cubs to our back garden as they are such fun to watch. So I hope that the radiotherapy will work (there has been a slight improvement but it takes time) and I will have a chance to see them. New life is all around us.

Going out

2011-03-12T03:17:00.000-08:00

I was awake rather a lot in the night as I have sinusitis and I had rather a lot of pain in the bones of my face, particularly the jaw Once again I have to be armed with tissues wherever I go but in other respects I feel quite well.

On Thursday Jola came and we all had a lovely day together. She is a friend from student days and we’ve both had real problems from time to time but we’ve been able to be supportive of one another. Raymond and Jola get on very well together and he jokes about her being my mad Polish friend but we do make each other laugh. Actually this was something Dr M referred to the other day in that in the midst of terminal illness it is possible to find enjoyment and have a laugh.

Margaret came yesterday afternoon to give me communion and afterwards we had a good long chat. She always lifts my spirits but yesterday I think I was on good form too. Again I realised afterwards that we had both been cheerful and able to laugh despite the seriousness of my situation.

This weekend we are on our own as Jonathan is away in the wilds of somewhere camping. He is going with a group of friends and they have plenty of activities planned so I am sure they will have a great time. I think most of them have responsible jobs so a weekend away is a real antidote to work.

Raymond and I are going out as we have a few things to buy after which we shall have lunch somewhere nice. I am far more confident this weekend about going out compared to how I felt last Saturday and Sunday when I was really quite unwell. That was a pity because Jonathan was with us and we had a few plans about where we wanted to go. However, that is the nature of this illness. As I stayed in all day yesterday I am really looking forward to going out especially as it is sunny.

An eventful two days

2011-03-11T02:35:00.000-08:00

The past two days have been very eventful. The bathroom floor has been finished and we are very pleased with it. On Wednesday morning we went to see Dr M with a heavy heart. He had implied the week before that this would probably be our last visit as the lymphoma was beginning to take over. I told him that I felt ill over the weekend but on Monday and Tuesday I had felt no sickness or cramps. If I had felt ill on the Tuesday and Wednesday rather than the previous weekend I think we would all have assumed that this was the beginning of the end and what ensued would not have happened.

As I was feeling better and my blood counts were slightly improved, Dr M examined me to see if the lymphoma elsewhere was growing at the same rate as my neck. He was pleased to see that it wasn’t and recommended radiotherapy. I pulled a face and said I couldn’t wait weeks for it to be arranged. He said that he had spoken to the department about the previous delay but if I could use my insurance he would try to arrange it for THAT DAY! With a smile on his face he suggested that we leave the room while he had a word with them so we went to speak with his co-ordinator about gaining the necessary approval from BUPA. She has been very good to me, in fact she came to see me when I was on the dreadful ward, and if there is any question of having to persuade the insurers about treatment, she has taken it upon herself.

Then out dashed Dr M wreathed in smiles and introduced us to a radiotherapy doctor (not the same one who delayed the previous treatment). She actually seemed almost excited that she was about to arrange something more out of the ordinary and I think most of them respect Dr M. She told us to go to radiotherapy planning where she would join us. She brought along a radiotherapist I had met before, the sort of person who would have said that it was not possible to arrange for the treatment within three weeks. She carried a tube which was actually the head of the radiotherapy machine they would use and although the end did not cover the whole of the swollen area we could see that most of the central part would be treated.

Normally the patients lie on a bed and the machines move around them. In my case I was in a chair and instead of the treatment lasting one to two minutes, I was there for fifteen, a massive dose. I was warned there would be side effects but at this stage if there is any chance of slowing down the growth I will take it. The sickness began yesterday evening, fortunately after I had been able to spend a lovely day with a friend from student days.

I really was impressed by the leadership and energy of the professionals who dealt with me on Wednesday – not like anything I have seen before. If only more of them could take the NHS by the scruff of the neck and do something with it.

Looking for signs of spring

2011-03-08T03:59:00.000-08:00

Today is bright and sunny and Sally is coming to do some more work this afternoon in the back garden. It really does need to be taken in hand. Ray has mown the front lawn and swept up leaves so it is looking very much better. However, in the back garden it takes a lot of work to make even a small impression.

The wild life are steering well clear of the front garden at the moment because of the tile cutting which is quite noisy. Normally there is a procession of birds after the food that has been put out and later in the day a rather fat squirrel but he is quite choosy about what he eats. Yesterday we saw a vixen strolling across our lower lawn at the back. She was looking quite plump so I think there will soon be some fox cubs. I do hope she brings them to the garden as we have had such fun looking at them.

It has been very busy here this morning with the tillers starting early and then the Tesco van with our grocery delivery. This was followed by my BUPA nurse who has taken my blood for testing ready for Dr M’s judgement tomorrow. We had to go into the kitchen to be warm enough for my veins as the tilers are in and out of the front door. My veins are in a poor state now so it took a while to find a good one. We had a chat about the palliative care available and he suggested that we need to tell both the GP and the other agencies when Dr M gives his verdict. We must not wait until I am acutely ill or I will be rushed to hospital which is not what I want. At least we have a strategy now.

I have found that I can escape the noise and the coming and going by remaining in the study and I have caught up with several emails. As I have a sofa in here as well, I can sit and read in comfort which is a bonus. Ray is hoping we can go out this afternoon and I think a drive would not only allow us to escape the workmen, but hopefully in the sunshine we can see some of the signs of spring.

The garden

2011-03-07T02:07:00.000-08:00

I had a reasonable night and although I woke a couple of times, it didn’t take me long to go back to sleep so the temazepan does work in that it doesn’t make me sleep but does sedate me. This is what I need as lying awake for hours with the same anxieties rolling around does lower my morale.

Today the nurse is coming to change my dressing. I am surprised that this is taking so long to heal. When I was a child and had two septic sores (I had fallen in the playground and the teacher asked another pupil to deal with it who put on a plaster without cleaning the wound) I had penicillin powder applied which cleared it up in no time. I didn’t realise that chicken pox took so long to heal.

We have someone starting today to help with the garden. I just wish we had had help a few years ago as watching the back garden deteriorate has caused me much anxiety. For years I did the pruning, cleared the paths and weeded the beds. I never wanted an over-manicured garden particularly at the back as it merges into the woods but it does need some tender loving care. When I became ill in the late 90s and couldn’t do any work I found it took me a couple of years to get back to where we had been. Since 2007 when I became ill again, little has been done apart from the lawns. Raymond has had the occasional blitz but he is limited since the accident and it is consistent effort which has the most beneficial effect.

The back garden slopes and has been terraced. Often when people come they shake their heads because it is not nice, flat and manageable like the front. I like it because the house is high up with a wonderful view over woods as far as the eye can see. Just part of those woods are in our garden and it was so good when the children were small for them to play in and make camps. I had a large woodland garden as a child and it was perfect for adventures. We don’t have a fence between us and the rest of the woods. When we first came here there was a nasty corrugated iron fence which I had taken away. Of course, that means nothing keeps the deer out but you would need fencing fit for a fortress really to stop them coming in.

A little further down is a stream and between our garden and the stream are the woods and a marsh. When the children were younger we naturally tried to wade through the marsh in summer but it was not easy and I wouldn’t recommend any uninvited guest to choose that route to our house. Although a few walkers and people with dogs walk elsewhere in the woods, this is an area which is people-free and a real sanctuary for animals.

The weekend

2011-03-06T02:17:00.000-08:00

I slept surprisingly well for a few hours last night but this morning I feel quite sick despite taking some quite powerful anti-sickness tablets. I am afraid I think it is the lymphoma in my stomach; certainly my neck seems to have become more swollen again. However I have had two good days and have just said goodbye to Jonathan as he returns to London.

On Friday morning, as I had some energy, I did some cooking for the weekend including making a flan nature, which when we are in France is one of our favourite pastries. In the afternoon Margaret came to give me communion as I can’t go to church services because of the risk of infection. We had a good natter afterwards and the afternoon flew by. She is off to the Caribbean in about ten days time for a well-deserved break. In the evening Jonathan arrived and it was so good to see him.

I didn’t feel well in the night so our planned trip to Beaulieu didn’t materialise. We had been going to have lunch out at a restaurant Raymond and I went to a little while ago but instead Jonathan cooked for us. He made beef tagliata with rocket which looked amazing and tasted wonderful. We also had pancakes as I don’t think I shall get round to them on Shrove Tuesday. Jonathan made them and cooked them but Raymond also proved adept at tossing them. So although it was a quiet day with nothing exciting happening, we really enjoyed each other’s company.

Ray is just taking Jonathan to the station; normally I would have gone with them but I am not feeling too good. I shall catch up on some emails and then I think we will spend the day quietly reading and watching a DVD. I don’t dare go out at the moment in case I am taken ill but Ray and I always enjoy being together. I guess seeing Dr M on Wednesday will confirm what I fear, that the trouble is being caused by the lymphoma rather than the effects of the chemo but we must just wait and see.

Looking forward to the weekend

2011-03-04T04:25:00.000-08:00

I am really disappointed that I can’t upload the photographs I took when we visited my aunt and cousin in Worthing. The fault seems to lie on my memory card but knowing that doesn’t make it any easier. I am so sad to have lost the record of our visit.

Having changed memory cards, I was pleased that the photographs I took yesterday in Bosham are perfectly all right. We both had a lovely day and are planning where we can go with Jonathan when he comes down this weekend. As he doesn’t usually arrive until 8.30 p.m. to 8.45 p.m. I don’t usually feel like cooking at that time as I am tired by the afternoons, so I did some cooking this morning and made a few desserts. I actually enjoy cooking and I know Jonathan appreciates home-cooked food although now he wants to be able to help me.

The transfusions I had on Tuesday have made a real difference. I hadn’t realised just how weak and tired I had become. I still become tired by the afternoon but I am quite normal in the mornings.

It has been quite cold during the last two days and today Ray has lit a fire. It always makes the house more cheerful and warm. Although right now we are in a difficult stage of our lives as I don’t think the oncologist will be giving any more chemo, there are so many things which lift my spirits, phone calls with friends and relatives and emails. I enjoy my long chats with Anna even though I can’t see her because she is a long way away, somehow I feel closer.

We are both looking forward to a relaxing and happy weekend, all part of making the most of our time together.

Bosham

2011-03-03T08:45:00.000-08:00

I slept very poorly last night. I was tired by 10.00 p.m. and knew I shouldn’t let myself fall asleep but I did and woke up at 11.40 p.m. with the edge taken off my tiredness. Fortunately, we haven’t anything difficult to do today and, in fact, we plan to go out. We plan to visit Bosham, where we shall have lunch, and the Witterings on the coast. It is a pretty area but not one I know very well. I do remember that we have to be careful where we park the car or it will float off when the tide comes in.

It is quite difficult to find places to visit which fulfil my restricted criteria. I can’t go anywhere where I have to stay overnight in case I become ill again and crowded places are impossible. This is a shame as I would have enjoyed seeing The King’s Speech. Shopping is out partly because it is crowded and also because there is not much point in my buying anything now. There are lots of beautiful places nearby to visit but I can’t walk very far. So we are having to think quite carefully.

Something went wrong with my camera or maybe the memory card and I have not been able to upload the last photographs I took. Most of these relate to our visit to Worthing to see my aunt and cousin so I am particularly sorry about that. Jonathan has given me a universal card reader so I shall check any future photographs I take.

I am looking forward to spending a day with Raymond without any medical appointments or important calls to solicitors. We shall have no distractions and will be able to enjoy each other’s company. The day is quite fine but cold and if it’s cold for other people it is doubly so for me but it is so much nicer than walking around in the rain.

********

We’ve had a lovely, lovely day. The journey to Bosham was pretty once we passed Portsmouth. There are lots of very individual rather quirky Sussex cottages. We went to Bosham Quay and walked around and then to the Millstream Hotel and Restaurant where we had lunch. The Millstream interior reminds me of the 1930s with its furnishings and furniture reminiscent of a country house in old fashioned style but without the shabbiness and stygian gloom. It is comfortable and the restaurant bright and airy. We had a really good meal followed by coffee in the bar area which is just like a very comfortable sitting room. We both felt very mellow when we left and although we had planned to do a little more, we had spent more time than we had thought over lunch so we came back home before I got too tired.

Voices from the past

2011-03-02T02:35:00.000-08:00

Yesterday we were lucky in our visit to the hospital in that although I was due to have quite a few procedures, everything happened on time and I was cared for by nurses who were really efficient and friendly. I am hoping that as a result of the transfusions, I will have a little more energy today.

We are in limbo at the moment not knowing why there has been this disastrous fall in blood counts. I know that when I went into hospital before, the same thing happened at the same point in the cycle. I am hoping that nothing dramatic is going to occur.

When we arrived home yesterday there was a parcel from Amazon. I had ordered a dictaphone and it seems to be reasonably easy to use. From my own experience I know that whilst we have pictures and, if we are lucky, videos of our relatives who have died, what does disappear over time is our memory of their voices.

Memories have to be cultivated in that we can’t just hope we will remember what people were like, we have to revisit them and I know I have forgotten the timbre of many voices I knew and loved. I remember all sorts of things they said but not the actual voice. Of course, I would recognize the voices instantly if I heard them again but I can’t recreate them in my mind except that of my maternal grandmother. She had an extraordinarily beautiful voice and I think she could have been a good singer in that it had a wide register and was naturally very resonant. Although she was fairly deaf from probably a very young age, her speaking voice never betrayed that and she articulated words very clearly.

The problem is that we have to survive the grieving process and balance this against cultivating our memories. As I look at my family I do so want their lives to develop as they should. One of my cousins and I lost a parent when we were in our teens and it led to some unfortunate decisions and as we look back we can see how much we wanted to restore family harmony. For a while the family is unbalanced but gradually balance is restored but it is a new balance, relationships change and grief is tempered by the knowledge that we loved the person we miss and that love was returned.

Waiting

2011-03-01T13:04:00.000-08:00

Today looks like an all-day marathon at the hospital where I am due to have two transfusions, pentamidine, have blood taken for Dr M to make his decision about Friday’s chemo and I shall also see Dr M for a consultation. Unfortunately, the early start means ploughing through the rush hour traffic which Raymond is not so pleased about.

********

The tiler came early this morning so we could leave on time. He grouted the tiles and when we came home we were very pleased with the floor; it is such an improvement.

I am continuing this on our return. I had two blood transfusions so in a day or two I should have a little more energy. I saw Dr M and one of the nurses told us that he gives all his private patient fees to either the cancer care at the hospital or a cancer charity; he really is a good man.

The pentamidine arrived on time and that was my next procedure. My blood was taken and we were shocked to be told that the blood counts had fallen dramatically. I was given a GCSF injection which should help the white cell count a little and it will last for three weeks.

As the blood counts are so low, I am unable to have chemo on Friday. I am not sure whether the growth in my throat has grown or slightly lessened. Dr M thinks it has grown but it has changed shape and is difficult to measure. It has so far been the case that I carry on with chemo for as long as it is effective i.e. it reduces the growth and does not cause a drop in blood counts. I think we can see that this week has not brought us good news.

I have arranged to have my blood taken on Tuesday. Dr M wants me to come into hospital as few times as possible for fear of coming into contact with infections. My nurse will come to our house to take the blood and the results will be available on Wednesday when I see Dr M. He thinks that the changes which have occurred are either the result of what he has been doing in terms of chemo, or it is the lymphoma so we have to wait and see.

Last day of February

2011-02-28T00:27:00.000-08:00

Traditionally February has been my least favourite month, still wintry and often no signs of spring. The excitement and conviviality of Christmas and the promise of the New Year are behind us. However, this February has meant recovery which is slow but real. On television there have been programmes which have been a real vindication of my decision to leave hospital and I hope they help other people who find themselves in the same position.

This has also been a month in which I have seen members of my family whom I have not seen for a little while and this has really been heartwarming. Weekends have brought visits from Jonathan and Anna which have not only been wonderful for me but I can really feel that Raymond is having the support he needs.

This morning I am hoping that the tiling of the bathroom floors will begin. I can never be sure until work actually starts. We got up early and re-arranged the bathrooms and I think the ceramic tiles will make a difference. Every year we have always had some project going on in the house to improve it and I think this one should cause the least upheaval.

Tomorrow is the start of March and I can’t help looking back to last year when I was in the Royal Marsden having the high dose chemotherapy. Although the whole thing was a difficult and dangerous procedure, the nursing was so competent but always with time for kindness. On 4^th March last year I received the donor cells which could have saved my life. Naturally, I am dreadfully disappointed that in the end the transplant couldn’t work for me because some of the mantle cell lymphoma remained and has grown back at a very fast rate. However, I shall always be grateful that someone quite unrelated, gave me a chance of life with her donation. The possibility of its working also gave us months of hope.

But back to the present. The tiler and his assistant have arrived and it’s still quite early so the project is underway. The nurse comes soon to change my dressing and tomorrow I am at the hospital all day having pentamidine and blood transfusions. So it is the start of another week.

Sun and hailstones

2011-02-27T11:39:00.000-08:00

The day has started well as there has been some sunshine – surely a precursor of spring. The “experts” have said that spring will be earlier this year so I hope they are right. As I look at the bulbs emerging and the first daffodils, I am willing the others to come out. Yellow flowers give such joy after the drear of winter.

I had a better night without the cramps of the previous day. However, I have noticed that some areas of my skin have started to flake and I am desperately hoping that I do not have a return of the Graft Versus Host Disease which made life so difficult before. I can tolerate all sorts of discomfort but that was so debilitating physically and mentally.

I think I spoke too soon about the weather; later on there was a real hailstorm and patches of hailstones on the grass and drive. All in all it has been a mixed day. Jonathan went back to London but engineering works would have made his journey quite tortuous so Ray drove him to Fareham to catch the train from there. It was so good to see him.

I suppose when people question me about how I am and the prognosis, I am forced to be realistic but I can’t always put it into words for other people. The lymphoma is so fast growing that I rely on the weekly chemo to keep it at bay and possibly reduce it slightly. However, there comes a time when a particular chemo no longer works and other drugs have to be tried. It is all going to depend on there being another drug to try, it being effective and it not sending me back into intensive care. I try to keep calm but I can’t be complacent and I know how difficult it is for Raymond. He is churning inside but tries to keep calm in order to support me. As he says, he is using work, the case and various other projects as a distraction and I can totally understand.

Days like today

2011-02-26T14:58:00.000-08:00

I had a rather patchy night’s sleep as I had a lot of cramp in my legs which I think is another side-effect of the chemotherapy. I slept in a little later than I had planned and had a hot drink plus crumpets and honey for breakfast. As I surfaced I realised that we were in for a good day. Not only was Jonathan here and obviously so happy about quite a challenging shoot he had been doing on Friday, but we were going down to Worthing to visit my aunt and cousin.

Today has seen a mixture of sunshine and showers. The temperature is noticeably milder and not only do we have the hazel catkins but the rather more elegant birches are drooping with catkins too. These portents of spring really do lift my mood and we enjoyed our drive down to Sussex to see my aunt and cousin.

Jonathan hadn’t seen his Godmothers for some years and it was lovely seeing them catch up. He is very engaging and really interested them when he talked about his work and the camping he does in quite extreme weather (at least camping in January seems extreme to me!).

We all enjoyed the afternoon and the hours went so quickly. I think we left at about 5.30 p.m. but the long slow dusk lasted until we reached the outskirts of Fareham. Luckily I had not done anything demanding in the morning so I didn’t get too tired in the afternoon as we always have interesting and amusing conversations with the family.

In the evening Ray and Jonathan watched a DVD while I read. And now it is the end of a relaxing day. I think I surprised my aunt and cousin when I said I was happy. I would, of course, rather not have a terminal illness. I would prefer to live longer and not live on a knife-edge but so many people and so many things make me feel a real contentment. Days like today are to be treasured.

Seeing the family

2011-02-25T08:32:00.000-08:00

Today has been quite busy with the nurse coming in the early morning to change my dressing. Then Anna and I watched a DVD before Raymond brought my mother over for coffee. Anna hadn’t seen her for a few weeks so they were really pleased to see each other. Conversation tends to rely a lot on writing messages for my mother to read but she was able to catch up with some of Anna’s news.

Just before lunch Dr M phoned about the transfusion. It has been all change and everything will happen on Tuesday. After lunch I had chemo and had my blood taken so that Dr M can be quite sure I need the transfusion. Mark will take it to the General and fill in a form which Dr M forgot to give me. It has to be done early so there is plenty of time on Monday to irradiate the blood.

I am beginning to experience some side-effects from the Vincristine part of the chemotherapy i.e. cramps and pins and needles in my hands – also lack of feeling in the fingertips. Dr M has decided that he will probably change the drugs for next time so that the problem does not get worse.

We haven’t done anything eventful over the past days with Anna but Ray was able to assist her as she is teaching a module on forensic photography. I know it pleased Ray to be able to help and she learns quickly. Anna and I had lots of chats which is just what we both want at the moment. She has not really been eating all that well recently because she has been staying late at work, so we remedied that with a good roast lunch. Yesterday evening we sat down together and watched Charlie Wilson’s War which made us all think.

By mid-afternoon it was time for Anna to go. We shall miss her as we were all so pleased to see each other. This evening Jonathan is coming down and will probably arrive at about 8.45 p.m. I wrote before that these few days would be rather mixed and at first that mixture was mainly bad, but now having both Anna and Jonathan here is a very good time indeed.

A very mixed week

2011-02-23T02:23:00.000-08:00

This could turn out to be a very mixed week. I felt some symptoms in the night of a possible urinary infection and we phoned the out of hours service. Although they have not yet received my notes from the GP, it is obvious she had been in contact so that the response to me was prioritised. Our initial call was at about 3.45 a.m. and the doctor arrived at 6.15 a.m. which wasn’t bad.

The doctor confirmed I had a urinary infection. He prescribed a broad spectrum antibiotic which I have started taking but said that analysis was needed so that a more specific antibiotic could be used. Sometimes I am rather tentative about the quality of doctors for the out of hours service, but I felt he really knew what he was doing which did help.

We are actually seeing Dr M this afternoon but I didn’t dare wait the twelve hours before seeing him before taking action. In my situation, what might seem to be a minor ailment to others, can swiftly take over because I have no immunity and this could lead to severe kidney problems or sepsis.

Just before 9.00 a.m. my BUPA nurse arrived to take my blood for testing so that Dr M can see the results on the screen this afternoon. He is a reassuring presence and told me that as I haven’t any fever or other symptoms, the infection may clear up before Friday and Dr M may decide to proceed with treatment. Of course, Dr M has the full picture and he may decide otherwise.

Somewhere in all this my regular appointments to have pentamidine have been overlooked. I did contact the GP but nothing has yet been arranged and it is prescribed really to prevent today’s situation, i.e. to ward off infection. I didn’t feel it very sensible to get on to my GP today in case Dr M can shortcut an appointment for me.

I must now take what means I can to speed up recovery. Obviously drinking plenty is the usual means of flushing out the germs and Ray has just gone out to buy me some cranberry juice. I hate the taste of it and it is very acidic which doesn’t agree with me but I think I can’t be too choosy.

I wrote at the beginning that this could be a mixed week. We have a possible chemo on Friday afternoon but also visits from both Jonathan and Anna to look forward to. I just hope the cloud of the effects of infection can be dispersed quickly and we can enjoy some family time together to the full.

Tapas

2011-02-22T09:33:00.000-08:00

It was very difficult watching the Dispatches programme last night about hospital food. There is an even more harrowing one next week about end of life care which I shall not watch. Although recent investigations highlighted in particular the plight of the elderly, the issue of hospital food goes across the board but it brought back really awful memories for me.

Many hospitals were built without kitchens or just the facilities to cook for staff and visitors. So many people are malnourished and dehydrated and I was affected by both problems. Yesterday when my GP came, she could understand how weak I am because of the time it takes to recover from the sepsis etc. but she did comment on the fact that I look well. The reporter on yesterday’s programme commented on how energised he felt after one good meal which I think came from the private patients’ menu. It is true. Since leaving hospital I have had proper, well-cooked food and it is impossible to explain not just the enjoyment, but the feeling that even if you can’t eat much, there is so much goodness in the meals one is eating.

Today we had lunch out as we visited Gunwharf Quays in Portsmouth. Our visits to places are not long as I tire easily so it is quite good to sit down and have lunch especially if we don’t actually go out very early. Today we had tapas which gave us a good variety. The day itself remained fairly gloomy with a fine Scotch mist or light rain but it was interesting looking around as it is mainly under cover.

When we reached home I was really very tired so lay on the sofa and had a read while Raymond made me a hot drink. Unusually for me, I then had had a short sleep, which I have done a few times now, never having had the knack before in my life. Dr Mead telephoned to catch up with how I am and confirmed that I shall see him tomorrow when, after the blood tests, he will determine which chemo I shall have on Friday.

Once again - report analysis

2011-02-21T03:42:00.000-08:00

Our well-planned Monday has been thrown a little into disarray as the community nurse cannot come to change my dressing. She normally comes at 9.00 a.m. which frees up the day and today Dr H, my GP, will come between 11.30 and 12.00, after which we had planned to have lunch and go out to do some errands.

As the community nurse has a cold, I can understand why she cannot come since my immunity is low but the substitute could not say whether she would be able to arrive in the morning or afternoon; it might even coincide with the GP’s visit, so we have had to suggest that the dressing is not changed again until Friday.

Today I need to look at report regarding Ray’s case. It is from the other side’s orthopaedic surgeon whom we saw in the Isle of Wight. Ray is required to read it carefully and make comments. Whilst I am happy also to read it through and make comments, I dread all the repercussions, the exchanges of long emails and point by point analysis. I have really gone past the stage when I feel I can do this. I do understand how unjust Ray feels about obvious mistakes in the report but the points begin to dominate our conversation as the case once more takes over.

Since the nurse didn’t come, this meant I could look at the report before 9.00 a.m. when I was still fresh. Raymond had pencilled in notes on errors and I pulled some of these together and put down my reactions just on a sheet of A4 paper which he is now discussing with the solicitor or his assistant on the phone. The report cannot be signed as it is but I am hoping Ray will see the solicitor face to face to suggest the alterations needed. This has relieved me as it can all become overwhelming.

I had some ready-made puff pastry which I had been going to use over the weekend until we decided to have a lunch out on Saturday. I made a quiche with onions and chorizo and as we seem to have lots of small potatoes, I also did a potato salad. I still like to cook but I can’t leave it to the end of the day when I am tired. Ray is quite willing but knows I still like to prepare meals and now we are eating our main meal at lunch time on the whole as it is rare for me to be able to be out for a full day.

Ray has had to put so much time and effort into this case; I find it difficult to believe that all clients end up doing so much of the work and analysis themselves. I hope the solicitor will now take a greater share.

Relaxing over the weekend

2011-02-20T06:22:00.000-08:00

Chemotherapy went smoothly on Friday; I soaked my hand and wrist in warm water and the cannula went in first time. As it was the milder treatment it was all over fairly quickly. As I had rested beforehand after a few jobs early on Friday morning, I was able to be still alert by the time Jonathan arrived from London.

On Saturday morning after the men had their bacon sandwiches for breakfast, we went out as Jonathan had something to buy in Tescos, but it didn’t take long. We then went to Bishop’s Waltham, a village not far away. It is easy to stroll around and we found a very spacious charity shop. They really benefit from having more affluent donors and sharp-eyed Jonathan found six shot glasses which he also thought he could use for tiny appetisers.

We went to a rather quirky place for a light lunch but I couldn’t eat much, just a poached egg on a crumpet. I was really ready to come home afterwards and we watched a DVD and I dozed on the sofa. I needed to rest as we had planned to go out to dinner at a local restaurant which is one of our favourites. It was nice to be able to dress up a little and feel suitably rested.

As usually the staff were friendly and we all were pleased with our choices. I have never had a bad meal there as it is always of a consistent standard. At the moment I have to be very careful about eating out as I would have no immunity or resistence against unhygienic food preparation. We spent about two hours just enjoying the meal and chatting. When we returned home once again we watched a DVD. Not a very dynamic weekend you might think but perfect for me as I could rest while not being completely house-bound. It is lovely to be able to spend time with Jonathan and Raymond just relaxing and chatting. Naturally, they spent some time considering their various rods and equipment for fly fishing but I am so happy that they have such a close relationship.

Jonathan returned to London this morning to spend some time with Josie. She was working on Friday and some of yesterday but I hope they really enjoy the rest of the weekend. Raymond is going to collect my mother presently and I look forward to seeing her but as she is so deaf it takes a lot out of me.

Chemo day

2011-02-18T03:01:00.000-08:00

Anna had been hoping to come down this weekend but she really is overloaded with lectures to write, marking and examination setting. In addition to her normal lectures, she is teaching a special module for Exeter University which means travelling down on a Sunday. I do hope the workload eases for her as it can be quite stressful but at least we can keep in touch by phone. I am quite relieved that she has decided to postpone the visit as the hours of journey time are very difficult when she has so much to do. With all the replacement bus services en route, she is not even able to do her work while travelling. She tells me she hopes to come down later on this week and having made the decision, she already sounds a lot less stressed which is really pleasing to us.

The nurse came today promptly at 9.00 a.m. which is really useful as the rest of the morning is my own. Mark plans to come with the chemo at about 2.00 p.m. but as it is the shorter treatment he may have to go to another client first. I decided to make some red cabbage this morning which can be frozen in foil dishes to go with the meals we have already cooked. The preparation time is quite brief although it takes some time to cook at the bottom of the AGA. We’ll have some on Sunday to go with the game Jonathan loves.

I decided that as the chemo is quite tiring and I’d like to wait for Jonathan’s arrival before going to bed, I would take it easy for the rest of the morning, particularly as I didn’t sleep well last night. It is so difficult to do, because I have always filled my days and enjoyed being busy. Luckily I have no other cooking to do today as I had already prepared a large lasagne and dessert which I froze the other day. It means that Jonathan can have something to eat after his journey as he probably won’t get here much before 9.30 p.m. I do appreciate the time he gives to us.

The chemo is still an unknown quantity and despite having had it before, since blood counts vary from day to day, I never know what my reaction will be. Last time it was overwhelming tiredness and I rather think that this is a cumulative effect and I must be prepared for it.

A day to treasure

2011-02-17T10:03:00.000-08:00

If we are not careful, a medical appointment or important phone call cuts into every day and we have no real time to ourselves. We decided last week to keep today entirely free and it worked. We were also lucky that out of the week so far, we had far and away the best weather. Not only was it bright and sunny which lasted all day, but the sun was warm and for once I did not feel cold when walking around.

We decided on a drive to the New Forest and although there were few signs of spring, the sun pierced the gloom of the trees highlighting the intense green of the lichen-covered tree trunks and the whiteness of the birches. There has been much rain of late so there were numerous pools and reflections which gave light and interest to the landscape.

We aimed first of all for Lymington and had morning coffee. My usual foray around the shops was limited as I didn’t need to buy anything and I can’t walk very far. From the town we took the road to Beaulieu which gave us a real variety of scenery for our drive, with heathland, pools, small plantations of firs and, of course, the wonderful variety of hardwoods. We passed Hatchett’s Pond and drove into Beaulieu village. We decided to have lunch at the Montague Arms Hotel which proved to be a good choice. In the past we have gone into the bar/restaurant but today we chose the main restaurant which was very pretty and quiet.

We both selected from the lunch menu, the saffron linguine with wild mushrooms and spinach parcels. The pasta was obviously freshly made and really soaked up the creamy sauce. We followed this with a refreshing lemon posset and I have to say it was a delightful lunch. We both felt so relaxed in peaceful surroundings. As our table was by the window we overlooked the garden. At first sight we were conscious that as it is not yet spring, the plants were still in winter mode but as we looked more closely it was possible to see the mahonia blooming and the forsythia just beginning to flower.

We had a little look around the village High Street but it is a little worrying that at least three of the specialist shops had closed; I suppose this is replicated across the country and it’s such a pity. We drove to Buckler’s Hard where we had coffee but the bar at the Master Builder’s is rather rough and ready but this was the only disappointment of the day.

During the main part of the day, although I didn’t feel particularly strong physically, I was much more energised mentally than yesterday. However, neither of us had slept well the night before so we made our journey home before we grew too tired and before the traffic caused problems. Tomorrow will be a busier day and I shall have chemo so today was a day just for us, a day to treasure.

Higher blood counts

2011-02-16T08:46:00.000-08:00

I had intended to rest for the whole of yesterday afternoon and I’m not sure where some of the time disappeared to. I did have some time to read which was restful but I knew that we had a tiler coming round to view the bathrooms. He had picked up his wife from work so while he and Ray were discussing bathrooms I made conversation with his wife whom I had never met before. She was a nice woman but I am not really up to making polite conversation at the moment. Consequently, I was very tired and had to go to bed early. In fact, my concentration was so poor I couldn’t read for long.

Today we went to the hospital early so that my blood could be taken and the results could appear on screen in time for my consultation. I wore my new wig and it has received quite a few compliments, or at least people say I look better they don’t actually comment on the wig. I was overwhelmingly tired as we haven’t been sleeping so we went to the Macmillan Centre which is comfortable and quiet.

When we saw Dr M. he had my blood counts on the screen and they had all improved. He has decided rather than go for the stronger chemo this week which might send them down again, he will go for the weaker chemo again. He feels it has already had a very slight beneficial effect on the mass in my neck and it could allow the improvements in my blood count to consolidate so I will be stronger by the time we do go for the other chemotherapy. Being closely monitored allows these more subtle decisions to be made and I am grateful for it. At the moment I feel it is as much an art as a science deciding upon the drug regime to control the lymphoma and balance this with my blood count and overall wellbeing.

As we hadn’t bothered about lunch at the hospital, when we arrived home we were tired and hungry. We ended up having a meal at about 3.45 p.m. which was a little odd for lunch. I don’t think I could have eaten before as I was too tired to brave the hospital canteen and I am always on edge before seeing Dr M and finding out the latest results.

Hopefully we can relax for the rest of the day.

Seeing old friends

2011-02-15T07:17:00.000-08:00

It was good to see Margaret H. yesterday afternoon. She is about my own age and manages to stimulate and relax me at the same time. We had a good chat and she updated me with what is happening in the village but we were also able to talk more seriously about what is happening to me too and she is very helpful. She stayed about two hours while Raymond was out.

I slept poorly last night and did some reading which stopped me from feeling too stressed or that I was going through the same old thoughts and ideas whilst getting nowhere – always worse at night. Anna’s course at Exeter seems to be going well and her students are appreciative but I think the journey back to Wrexham was long and tiring. She is having to work very hard at the moment.

Today has been lovely as Jola and Paddy visited arriving about 11.00 a.m., leaving just before 3.00 a.m. We had an easy lunch and did lots of catching up as Jola is a friend from way back, student days in fact. We thoroughly enjoyed the visit but I think I was just beginning to get tired when they left. I think they timed it very well.

I shall try to have a rest this afternoon; I’d love to have the art of napping which Raymond has. I don’t mean I have never fallen asleep during the day; I occasionally do in the early evening if the television is on, but I just can’t deliberately decide to have a nap. I shall probably read and as we have eaten well at lunchtime, neither of us will be cooking this evening. We have a tiler coming to look at the bathroom floors this evening. I shall leave that in Raymond’s capable hands but I hope the job can be commenced soon.

Dr M, my oncologist, telephoned this morning to see how I had fared after the last chemo. As it was quite mild, I don’t think I had any ill effects except extreme tiredness and I think in the last twenty four hours there has been a very slight improvement in my neck, but only very slight, nothing major. We shall see him tomorrow when he will decide upon the next course of action, but he sounded quite cheerful.

Monday morning

2011-02-14T05:44:00.000-08:00

It was nice on Saturday after our jobs to go to Wickham, one of our favourite local villages, where we had a sandwich lunch with chips in a pub on the Square. The sandwiches were really full and Jonathan benefited from my last one. We then called in to see an old friend but by this time I was nearly out of my mind with tiredness. Ray was just about to nod off to sleep leaving Jonathan and me to carry the conversation, when I gave him a slight kick. Jonathan noticed how tired I was and insisted we came home. It didn’t take me long to recover so I lay on the sofa and we watched some DVDs.

This morning the nurse came to do my dressing; it is a slow process healing but apparently it has not been made worse by the chemotherapy as sometimes happens. I am very tired today and finding it difficult to climb the stairs. After that we did a letter to the solicitor about Ray’s case; I don’t think I can really do much more on that now. Then my GP came to talk about the situation. We needed to know who we ring out of hours if I am taken ill and she has promised to contact the out of hours service with an up-date on me and a notice that I am a priority case which gives us some reassurance.

We then had to decide about resuscitation. I am quite prepared to go into hospital to have procedures such as blood transfusions or platelets but not intensive care so I have to fill in a form about my wishes. Apparently we have to keep a copy in the fridge if an ambulance is called and no family members are here who know what my wishes are.

It is all rather serious and over the past few weeks it has meant issues such as this, together with all the practical arrangements have had to be discussed. Frankly I now have had enough of this and want to put this behind me. If you are not careful there is no end to the practical arrangements which can be made and whilst they are distracting, at some point distraction is wrong in that we should really be looking at what this period of time really means.

I am getting too tired for lots of visitors. The visitors I am having this week I have known for many years and it will be good to see them and they won’t wear me out. I find even catering for a weekend is tiring. I don’t want family coming and then having to spend a lot of time in the kitchen so I do some cooking in advance but it is not as easy as it used to be. Neither do I want a lot of cooking done for me after which the kitchen looks as if it has been blitzed. I just want the house to run itself in an orderly way so I can have a more quiet, restful time.

A mainly relaxing weekend

2011-02-13T09:04:00.000-08:00

On Friday afternoon I had chemo. I alternate between a longer, higher strength chemo and a slightly weaker one. We didn’t get started until quite late in the afternoon and it took three goes to get the cannula in as my veins are in a bad state particularly after the way they were used when I was in intensive care. I still have some spectacular bruises.

Fortunately, Mark was the nurse who administered the drugs and he is very good. His presence gives me confidence. In fact, it didn’t take very long and I have felt tired but not unwell. That same evening Jonathan arrived so I had something to look forward to.

Fortunately, I had done some cooking the day before so that when he arrived I could put a meal in the oven for him. He is so good natured about coming down by train although at the end of a busy working week, he must be tired. We had a wonderfully relaxing weekend. I say relaxing, but on Saturday morning we had some visits to make and the relaxation came on Saturday afternoon, evening and this morning.

We went to choose some tiles for two of the bathrooms. Now Ray has to get hold of a tiler who, hopefully, can tile the floors reasonably promptly. Both bathrooms are quite small but there are some awkward cuts to be made in the tiles as the suite is already in situ. Next we went to Makro. Although I knew exactly what I wanted to buy, there is always temptation in the food department and I never seem to escape without paying quite a bit. However, as I wanted bed linen and towels I thought I had found some good quality ones for which I did not pay the earth.

Afterwards I went to collect my new wig. As I am no longer teaching I didn’t feel compelled to have it in exactly the same style as usual. It is short but a little more spiky and fairer than my hair grew back this time. My hair has been falling out this week which is not very comfortable so it was very timely. Ray likes it and my mother says it suits me and doesn’t look too wig-like.

Today I really tackled the linen cupboard with the idea that if I am ill at home, it is easy to find everything and hopefully also easy to keep things up together. Once more the charity shop is benefiting from my constant clearouts. Raymond is always asking me if I have some spare rags as if I just open a wardrobe door and lo and behold there they are. However, this gave me a chance to get rid of some old linen so he now has a really large bags for use on his jobs.

We’d had such a good time with Jonathan that I was really sad to see him go but so thrilled we had had time to spend together. After taking him to the station we went over to pick up my mother whom I hadn’t seen for a little while. We had a good talk, at least she talked and I wrote. I am still not quite sure how much she knows about my condition and I am wary of telling her too much. I think she can work out the limitations of the chemo herself but I don’t want to be depressing. Altogether we have had a good weekend.

A serious talk

2011-02-10T05:48:00.000-08:00

Yesterday was spent largely at the hospital having blood taken and seeing the oncologist for a serious talk. All I can say is that we are walking on a knife-edge with the treatment. The lymphoma is so fast growing chemo must be given but my body is desperately trying to recover so that my blood counts can be sufficient to ward off infection.

The hospital was very noisy and I don’t really like being surrounded by so many people with my zero immunity. We managed to find an oasis of peace in the Macmillan centre where we could sit in comfort and quiet.

This morning I have been doing some cooking for the weekend. I don’t really want to spend too long in the kitchen if Jonathan is coming down for the weekend as time spent with him is precious. We have a couple of calls to make on Saturday as we are aiming to make our bedroom and en suite bathroom as convenient as possible if I am ill at home. I should also like to see my mother. I am not sure just how aware she is of my situation but obviously I couldn’t see her when I was in hospital nor last weekend as she was very tired.

One of the local nurses came quite early this morning to change my dressing which was good. She thinks there is some improvement and certainly it is less painful. I had asked the nurses to look at all the larger chicken pox scabs when I was in hospital but to no avail. My GP also telephoned and plans to come and see me on Monday to catch up with my situation. This leaves next Wednesday for another hospital and chemo again on Friday.

The danger in all this is that there will be no time for ourselves so I am hoping Thursday can remain completely free. The problem is that I never know how well I will be but we’d like to go out for a drive.

A good day seeing family

2011-02-09T02:02:00.000-08:00

Yesterday was a good day and I think we really needed it. My aunt and cousin came to see us from East Sussex. First of all they went to see my mother and she didn’t know they were coming so it was a lovely surprise for her. She was on very good form and they laughed and reminisced for at least one and a half hours. As they know how deaf she is they had come armed with an A4 pad and pen which they left with her so she can go back over the conversation.

After seeing my mother they came to see us. My cousin is a very good cook and runs her own catering business. She took the trouble to bring us some meals to put in the freezer. Although both Raymond and I cook, sometimes after we come back from hospital visits we don’t feel like cooking, and these will be most welcome. Jonathan and Josie have also cooked for us and it is such a practical and welcome gesture.

We were also given a beautiful chocolate cake made with ground almonds which we were told we could freeze. However, it is such a treat I am not sure whether it will see the inside of the freezer. It is lovely to have tempting food which I know will help to build me up especially after the experience in hospital.

We always manage to pick up where we left off and there are so many areas of interest to talk about that the afternoon went by all too quickly. I do hope we can see them again soon but it is not an easy journey through Sussex. I am so pleased that Raymond gets on so well with them too and they are obviously fond of him.

In the morning Raymond had managed to complete some paperwork which was hanging over us and I wrote some letters. However, it was a day really when I did very little as we were looking forward to the visit. Some days I try to do too much and by the afternoon I am really tired. Yesterday, having saved my energy I could really enjoy the afternoon.

Last night I slept for a few hours as I was tired then awoke. I couldn’t return to sleep initially and I listened to the nightingales. Fortunately, having had a good day my wakefulness was not troubled by negative thoughts. My sleep was rather chequered for the rest of the night but although today will be quite busy, I hope it will not prove to be too difficult.

Chemo this week

2011-02-08T02:38:00.000-08:00

Everything went well at Exeter for Anna yesterday as she started teaching a new module. Unfortunately her journey back to North Wales was rather tortuous as there was flooding on the line and part of the journey had to be undertaken by bus, just what you want after a long day of lecturing.

My oncologist rang me today after I left a message yesterday and suggested I contact Health Care at Home to see if they can fit me in with chemotherapy this week. The type of chemo drugs I shall be given will depend on my blood counts tomorrow. The strength of the chemo will also be tailored to fit the results.

When I rang Health Care at Home I was able to thank them for the prompt action of their nurse who came to do my blood tests at home on January. When she found out how ill I was she contacted the hospital and ensured I was admitted. This turned out to be absolutely crucial. They are able to carry out the chemo on Friday afternoon which means cancelling a friend’s visit, but I shall be able to have it administered by Mark who was so supportive when I had chemo in 2009.

This is turning out to be a very busy week and I am trying to cope with all the admin involved and keeping BUPA in the picture. I am certainly lucky to be able to have the treatment at home and I am feeling a little more upbeat than I was during the previous couple of days. When there are adverse changes I have to come to terms with them.

This means I have to be very aware of changes in my body and react immediately. In addition, I have to be aware of the fact that the results of all the chemo are unpredictable as to whether they will be successful in reducing the lymphoma as well as the side effects on my body. I have to accept that time is not on my side but it is useless being miserable; it doesn’t help the outcome and is a complete waste of time as we have to make the most of every day.

My hair is beginning to fall out as I knew it would. Knowing makes no difference at all even though this is the third time. I have an appointment with a wig supplier on Friday morning but you can’t wear a wig all the time so fortunately, I have plenty of turbans and scarves. It is just one more blow to one’s morale though.

It is almost four years since I was diagnosed and there have been so many ups and downs. A long illness is difficult not only for the patient but the whole family. I am grateful for all the support but sometimes I wake up and just wish we were free of it. Not to be I’m afraid.

The troublesome neck

2011-02-07T02:21:00.000-08:00

We had a quiet but enjoyable weekend with Jonathan visiting us. We spent some time watching DVDs of 24 which were relaxing. Jonathan remembered how I liked watching DVDs with Anna when I was ill before – something we could share which is not too brain taxing for me.

I still have some nasty sores left from the chicken pox/shingles and the nurse came today and dressed the area I was most concerned about. Although I am over the illness a few places have been giving me trouble as, once I was out of intensive care, the nurses did not look at them. Fortunately, now I seem to be under the local nursing care which may be important in the weeks to come.

I have passed a message to Dr M’s secretary that my neck is swelling again. It raises all sorts of questions about whether further chemotherapy will be necessary, beneficial or possible, bearing in mind not only my blood counts prior to treatment, but the overwhelming effect chemo had previously on my blood counts after treatment. This is rather worrying for both of us but we are seeing Dr M on Wednesday and he will have my up-to-date blood counts at the time of our meeting.

Whilst mostly the dates marked on my calendar for this week are connected with medical appointments, I am hoping to see my aunt and cousin from East Sussex tomorrow. They plan to visit my mother as well which will give her much pleasure. We are also going ahead with buying her a special hearing device to help her take part in conversations.

We are both thinking about Anna today as she starts to teach a new module at Exeter. We are glad she has maintained her links with the university and we understand the course is over-subscribed and should be popular with the students.

More chemo needed?

2011-02-05T10:19:00.000-08:00

I think I may need some more chemo as there is possibly some activity in my neck again. It is hardly surprising as I was supposed to have 8 weekly chemos provided the blood counts were OK and I have only had one. That single chemo had a really beneficial effect on the lymph nodes although a devastating effect on my blood counts. A really very careful calculation has to be made as to what my body can bear.

I had a good sleep last night although I am lacking in energy today. Jonathan arrived yesterday evening and it is so good to have him around. I knew he wanted to go to a fishing shop while he was here so I suggested a trip out in the car. I was in the back seat covered with a quilt and armed with lots of reading while Ray and Jonathan perused all the fishing gear. It was nice for me to get out of the house on a trip which was not a medical necessity.

Ray and I cooked a gammon joint yesterday so we are just having a simple meal this evening. I am trying to eat a little more to push up my weight but it is quite difficult. I find I need particular things to tempt me and on our way back from Alresford Ray and Jonathan bought me some raspberries and clear honey. I find I am hankering after fresh fruit and vegetables at the moment.

I hope I am going to have the energy to stay up for longer this evening, as I slept better last night. Even if I am lying on the sofa at least I am part of what is going on. If I go to bed too early the nights are rather long.

Somehow we seem to be creating more washing than usual. Normally I would be bustling around just keeping things in order but now I must calculate each trip upstairs. In the mornings I can go up and down unaided but I need a little help in the evenings and I can’t carry anything.

It has been a dully rainy day outside but so good to have Jonathan here. He and Raymond can talk about fishing till the cows come home but I am so thrilled they have such a rapport.

Journeys still to make

2011-02-04T08:07:00.000-08:00

I was not sure what to expect before two nurses arrived this morning. They are both connected with community nursing although based in two different areas. We have encountered so much talking and no action we were both feeling a little cynical. However, we found them to be very practical and they understood that we want to put in place plans in case I become ill again, particularly out of hours. Prior knowledge of my situation will enable us to access care much more easily.

We are also trying to get back to some normality in our home. Whilst I was in hospital, so many things were put on hold and it is good to have the house more organized again and Raymond is trying to deal with the post which had to be ignored for a while. I have been really uplifted by replies to my blog, telephone calls and messages from family, friends and people in our village. I am only just getting round to catching up so I apologise for not acknowledging before just how important all the prayers, messages and good wishes have been. They helped to carry not only me but our whole family through the last two or three weeks.

Anna’s academic paper written jointly with a colleague has been accepted, yet another rung on the ladder. Yesterday she was pleased to attend the inaugural lecture of her good friend and mentor at Chester. We take such delight in seeing her blossoming in her chosen career. It was lovely to talk in a relaxed way to her this morning and hear her chuckle; conversation over the past two or three weeks has been so difficult when half the time I have not been with it.

We are looking forward to this weekend with no medical appointments. Jonathan is coming down to see us and despite the cold winds outside, the curtains will be drawn, candles lit and we shall relax together. So much has changed in the last few days. I know I walk on a knife-edge and my situation can change in a matter of hours if not minutes, but I am a little stronger. Knowing that I shall be closely monitored helps me to be less paranoid. I shall have lots of questions about future treatment when I see the oncologist on Wednesday, but I think we are facing the unknown and there can be no definitive plan but rather we must react to how the lymphoma behaves.

I suppose what I am really looking forward to is less drama and a little more normality. Now I can go up and down the stairs by myself Raymond can go out without worrying about the possibility of my falling. Even though I can’t really venture into the garden I can watch and listen to the birds and all the other creatures going about their daily lives and Ray can walk by the shore to watch the ships. There are still so many journeys to make.

Dealing with the solicitors

2011-02-03T08:44:00.000-08:00

Tuesday and in the night the fog horns sounded quietly out to sea. I woke up a couple of times but there is no anxiety now, just a quick check in case there are any new spots as I have no immunity against the virus which seems so innocuous.

Yesterday was difficult for Raymond as once again the solicitor was asking for revisions. His office were also worried lest he might be a carrier of chicken pox! The latter illness is something very many transplant patients do have again because we have a new DNA and immune system (in my case a lack of one) but Raymond is not a walking time-bomb! When I think of how I have risked my life going to their office with zero immunity to sign papers I was not amused at their attitude to Raymond.

Raymond has been convinced that not only the solicitor is reading the statements, but also the barrister and Ray keeps being asked to make unnecessary changes or put in items which are already there. He was so incensed he got up in the night although he had a meeting with the solicitor today. I couldn’t sleep either as I was annoyed that they were so amateurish. I got up and fired off an email from me about their editing skills!

If more than one person is editing a document the title and date of all subsequent drafts should be agreed.

If it is uncertain whether one of the parties holds a fully computerised record of all previous changes, a copy of the document under consideration should be available for consultation.

The name of the person suggesting the changes, together with the date should be clearly visible.

If further changes are suggested by an additional editor[AD1] , these should be dated and shown in a different colour.

If a further editor makes suggestions, it would save time to check whether he or she is flagging up points as they read or whether these points already exist within the existing document. These checks will ensure unnecessary changes are made as well as avoiding interruptions to the flow of the document and unnecessary number changes.

I am pleased to say the meeting went well! All these firms earn their money by postponing settlement/trial dates but I don’t think they will be making Ray do much more of their work! I have got it all out of my system and hopefully can concentrate on making progress.

[AD1]To the document under consideration

Gradually growing stronger at home

2011-02-01T09:12:00.000-08:00

Over the weekend the house was full. It was Josie’s birthday and Jonathan cooked a lovely meal for us all. Although on the Sunday Anna had to work on her paper, she spent a lot of time with me on the Saturday and I was glad she could spend some time with Dave after a highly emotional and hard-working fortnight.

I have to say I was happy to be at home but exhausted. Ray was running a course so I needed a lot of help from everyone else in getting up and down stairs. I have always helped the courses to run smoothly and see to the props and dresses. Normally these would have been washed and put away on Sunday ready for the next one, but we are only gradually going through the tidying up process now. Ray was very tired because of running the course so soon after getting me home.

Yesterday I went back to the hospital for the first time since leaving so suddenly. I had my blood tested and then went to use the pentamidine which helps keep up my immunity. Even before I came out, one of the nurses who was kind to me on the ward had the results of my blood counts. She had spoken to Dr M who said they were all fine. Although I know they can go up and down with great rapidity, this was a real vindication of our actions and there was no need for me to stay for a blood transfusion or platelets as we thought we might.

Today we managed to arrange some banking and Ray went to the farm shop as I have been craving fresh fruit and vegetables. We have had a lot of lovely messages and telephone calls from friends and family. I feel a bit mean in not being able to talk to everyone but those really close to us know that visits will have to be short until I regain my strength.

Over the weekend Jonathan and Josie went to see my mother. She was on very good form and was so pleased to see her. She had been low in the morning which is not like her but was relieved to have a letter from me outlining what had been happening. I think the family were wise not to try to see her whilst I was in hospital as it would have only made her feel even more unhappy, as she would not have been able to do anything.

The oncologist rang today to reassure me that I could ring him at any time if circumstances changed, but he confirmed I was making progress and that he and the team were thrilled that the lymphoma had reacted so positively to the particular form of chemotherapy I had been prescribed. I know it will return but it does mean there is still a useful drug in the arsenal. I am very tired but hope to make one or two phone calls before the evening is out.

Thank you for your support

2011-01-30T02:55:00.000-08:00

I am as weak as a kitten so this blog will be short. Anna has been helping me to piece together the missing days when I was in intensive care. It looks as if my immunity suffered a spectacular crash after chemo. I think I had pneumonia followed by chicken pox which affected my brain and liver. Judging by my orange skin, my kidney function was also affected although this is now improving.

Undoubtedly, the drugs then administered kept me alive but the nightmares began literally and metaphorically. I thought for a while that only I knew about the filthy conditions, the appalling food and the quality of nursing care. There were exceptions particularly in intensive care but later I was reduced to a haunted shell. My family gradually became aware of the conditions but were torn between the importance of the clinical care and the degradation which was occurring. My good friend, our lay reader, also observed what was going on and one of the people she spoke to was Rev. W.

When I was strong enough to insist on discharging myself, I met opposition. Did I know my own mind? Did I know what was wrong with me? Had I thought about the effects on my family? I was bombarded with NHS jargon – palliative care, offers of nutritional advice – always for tomorrow never assistance for today. I insisted that Raymond should be telephoned to take me home. This put him in an impossible position as he knew I still needed acute clinical care but then everything all came together and his horror of what I was going through meant he came for me. At first I was told security would prevent my leaving and Raymond was not allowed to bring in my clothes.

Then we had to talk to the doctors to show that I was adamant. I don’t think I have ever been so quietly analytical and obdurate in my life. There were no arguments which could not be countered.

Raymond found a wheelchair as I watched a very confident cockroach cross the floor near to ward reception. Once I was dressed and in the wheelchair I have to say I have never moved more quickly along hospital corridors. En route we met Rev. W who had been visiting another parishioner and was on his way to see me. Ray didn’t break his stride but I explained what we were doing and I was amazed to see a clear understanding in Rev. W’s face. He went ahead and found the lift for us. Ray lifted me into the Jeep and we drove home. All the streets were wider than I remembered and the houses and shops seemed to be sporting lovely colours after the dark world I had been inhabiting

Escaping from hell

2011-01-28T03:46:00.000-08:00

Clinically I should be in hospital. After very strong chemotherapy which totally wiped out my white blood cells, I contracted shingles/chicken pox, something my body could not withstand.without an immune system. I spent, so I am told, about a week in intensive care. I was in and out of consciousness – then transferred to another high dependency ward. I think I was in a catatonic state for some time.

Medically the best care should have been in hospital but in all other respects I have been in hell. This blog must be short as I am very ill. It is better to be at home regardless of outcome as the degradation I was suffering was frightening and despite my family’s best efforts, it was impossible to secure my physical and mental wellbeing when they could not be with me.

With great difficulty I managed to discharge myself from hospital yesterday. Ray got me into a wheelchair and we made our escape. Security at first resisted by preventing Ray from bringing in my clothes. It took absolute determination to counter medical arguments but I was being reduced to a frightened shell. I won’t write any more now but gradually if I do get stronger I shall explain.

The rollercoaster of chemo treatment

2011-01-18T03:50:00.000-08:00

It is a bright, sunny day which helps to lift the spirits but it is also very cold. At least I feel the cold as I usually do during chemo. I can’t believe I am going to have another session this week. I am just about to ring BUPA to make sure that everything is in hand for blood counts on Wednesday and chemo on Thursday.

I am able to use the computer although not very accurately at the moment. But it does give me access to the outside world. Talking on the phone is more difficult because my throat is so sore but some of the swelling has gone down which is obviously a good thing as there is never any guarantee that a chemotherapy regime will work, especially at this stage.

I shall find the chemo at home much more difficult without Anna’s reassuring presence. She always holds my hand while the cannula goes in or doesn’t go in as it is very painful, especially in the back of the hand. I was very lucky that she was a home so much during my previous treatments and although she phones me every day it is difficult to be so far apart.

Jonathan is coming down this weekend which gives us something to look forward to and good for Raymond as he spends so much time with me. The following weekend is one of Ray’s courses, so Anna hopes to come down. It will not only be great to see her, but she can cook while Ray is busy, not that I am eating a great deal at the moment. I am feeling less sick right now and have been able to keep coffee down but soon I am back on the rollercoaster so we’ll have to see what happens.

I have just had an email from my cousin Susan in Canada. She is always sympathetic and encouraging. She was describing a trip she and he friends made last weekend to frozen lakes, children skating, snowmobiles swooshing past and massive icicles. I wouldn’t like the cold at the moment – 18 degrees, but the picture she painted was so atmospheric.

The effects of chemo

2011-01-17T03:25:00.000-08:00

Yesterday and today the effects of chemo have taken over and I feel very ill. The steroids cause miserable dreams when I do get to sleep and I seem to be in a state on semi-consciousness most of the time. I am drinking water and lemonade perpetually with all the consequent effects day and night.

Yesterday I was very sick so I am not really eating anything. Ray did me some consommée which was good and I know it is causing him problems to find something I can keep down. My throat is very sore so he has gone to get me an alcohol free mouthwash. Everything is happening to other people and I feel I have retreated into a very small world or medication and discomfort.

I hate to seem so sorry for myself but a gloomy day in January is perhaps not the best time to be feeling upbeat. I think Jonathan may be able to get down this weekend – it may be the week after, I am not too bright at the moment. I am looking forward to seeing him and it will be a real break for Raymond.

In the past chemo has been given one week after which I have had two to three weeks to recover. I am not sure how I am going to cope with weekly chemotherapy as I seem to be growing physically weaker. Even getting out of the bath was difficult.

I have just had a nice phone call from a friend. Although my throat doesn’t allow me to speak for very long, she is always very encouraging and is offering to sit with me if Ray has to go out. My head is just one big headache at the moment so I am off to drink some lemsip – a glimpse of the high life.

My oncologist has just rung me to go through my symptoms. I think he is surprised I haven't had to go into hospital yet as I think he was expecting it with such low blood counts. He has advised me not to go out at all and the way I feel at the moment, I am only too happy to comply.

Practical arrangements

2011-01-15T03:58:00.000-08:00

I have been getting over the strain of the all-day chemotherapy on Thursday and coping with the side-effects of the cocktail of drugs. We did do some practical things yesterday afternoon. The rest home where my mother lives has been trying out a new device for deafness. It is not a hearing aid which someone wears all the time, but a special device which can be used to have a conversation. They were delighted to have tried it on my mother and for her to be able to hear what they were saying. They passed the literature on to me and if it proves to be good, I think we shall get one for her so that she is less isolated.

Then we went to do something we had both been rather dreading, seeing a funeral director. I told Raymond that I would be much happier if I knew that my mother’s funeral arrangements were all made and paid for. If the home also knows what we have done, they can alleviate any anxieties she may have on that score as she is rather forgetful. It also meant I had to think about my own arrangements which can be a blueprint from which the family can work later on. I felt that if I didn’t have to worry about things like that, I would be able to concentrate on trying to cope with the disease better.

Margaret, a good friend to us and our parish church lay-reader, has been a wonderful sources of help and strength as she is to so many people in our village. She has been able to advise us what to do as we were really quite ignorant. She also has a great sense of humour so nothing is all gloom and doom.

Today, hopefully we can relax. Ray is exhausted as it is a very emotional time and he is trying so hard to support me. I’d love to be able to say that I can see a real improvement in my neck. It hasn’t got any worse but it could be that the steroids are keeping it from growing larger. Inside my throat I think there may be a slight improvement and I can swallow most of my tablets except one, without their getting stuck.

It has been a strange week. My mother is 97 and I never really thought about it but I suppose I assumed I would outlive her and always be there to care for her needs so it has been a cause of some worry that I am likely to go before her. However, she has earned so much love from her immediate family and from the carers where she is now living, that I feel much more confident now that she will be happy and well looked after.

Chemo and after

2011-01-14T04:08:00.000-08:00

Yesterday we went to Southampton General Hospital for my chemo. I was put in a side room with an en suite so it meant Raymond could be with me most of the time. This was fortunate as 12 minutes into having an infusion of rituximab I collapsed. I have had this drug before but the lymphoma has moved into a different class, blastic mantle cell lymphoma which is much more aggressive. I started feeling very sick and flushed. I got up with Ray’s help to go to the toilet and collapsed. Ray pressed the nurse’s call button but no one came.

Apparently the call button merely activates a light outside the room rather than at the Marsden where it actually buzzes until someone comes to the patient’s aid. I was unconscious for a while during which time Ray called out to reception where someone told him that the nurses had gone for a cup of tea. However, apparently after that the emergency routine was activated and soon there were six people in the room including the registrar.

The drug was stopped and I rested while various questions were asked. Treatment later restarted with the drug being infused very slowly. Gradually it was speeded up so I didn’t have to stay overnight. I would have been afraid to as Ray wouldn’t have been allowed to stay and I didn’t have much confidence if an emergency were to happen. They are all very nice and caring but having seen the watchfulness of the Marsden I am not as confident.

My oncologist rang this morning to say that he will not be continuing with the rituximab which he does not believe is very necessary, so this means I can have the next chemo at home. I find it safer at home as a nurse is with me all the time and still has the equipment at hand if anything goes wrong. I have been warned that things will get worse before I get better and I must contact the hospital about any side effects, not just of the chemo, but my very low blood count. I may have to go into hospital for transfusions of blood and/or platelets. I just wish I were nearer to the Marsden.

Dr M also told me that the lymphoma had spread to the bone marrow which is what we had all expected so it is probably pretty well everywhere, hence the decision to give chemo. He is likely to arrange for another scan in two weeks and has asked me to monitor progress of my neck so he can see if this particular chemo is working. If not he has already arranged with BUPA for me to have another chemo regime which is not yet licensed in the UK. He is certainly doing his best for me by being very pro active. I have had lots of lovely messages from family and friends which are a source of encouragement to us all.

Things have changed

2011-01-12T02:59:00.001-08:00

What a difference a few hours make. Yesterday I was quite upbeat, not about my situation but how we were handling the medical procedures prior to the chemotherapy. This morning my oncologist telephoned. The situation is serious and the lymphoma has changed its form and its rate of growth. I have to put all my energy into dealing with this situation.

Things we had planned to organise over the next few weeks must be done now.

Temporary fix

2011-01-12T00:00:00.000-08:00

Tuesday was a brilliant day. You see everything is relative. Two, possibly four years ago, if I had visited two hospitals in one day, had blood taken and a CT scan during which a cannula was inserted and dye put into my body, I probably would not have written that opening sentence. So why the change?

For several days the swelling on my neck has grown. On Monday both sides were affected together with my left shoulder. My throat was constricting. I think most people would find that disturbing if not frightening. I didn’t think I could wait until the chemotherapy started on Thursday so my oncologist arranged for a prescription for steroids to be made up for collection by us on Monday from the hospital pharmacy, when we came in for the bone marrow procedure.

I know this is only a temporary fix but by this evening a lot of the pain had subsided, the tablet which was stuck in my throat had gone and the swellings had reduced by about one third. I am ecstatic. The swellings were pushing up into my jaw line so it was difficult to move my head. I am writing this late at night on Tuesday and I think the effects of the steroids will mean I shall not sleep tonight but at least I don’t have to fear that my throat will close up altogether. Of course, now I am hoping that the chemotherapy will continue the work as I know the steroid effect is not long-lasting.

Today I had blood taken by someone who was being overseen by a more experienced nurse and she didn’t get the needle properly inserted into my vein, but the older nurse just manipulated it slightly and the blood could be withdrawn. Sometimes they have to find a new vein. They were very apologetic but actually they had not caused me much pain so I told them about my bone marrow treatment the day before which was the least painful I had experienced. They wanted to know who carried it out and when I told them, they said that the nurse was working in the next room but she would be pleased to learn of my comments as usually it is quite stressful. I know I moan about the General and needless to say the parking was difficult, but I have had some excellent treatment this week.

Then it was off to the Nuffield for the CT scan. There are quite a few different types of CT scans depending on which part of the body is to be looked at and not all require the patient to drink a liquid prior to the scan. The practitioners were actually very competent and I didn’t have to have the cannula inserted into the back of my hand (very painful) as has occurred quite frequently in the past – something else to be grateful for.

With all the different procedures going on, I hadn’t had the opportunity to consider my neck, but I suppose if it had been as painful as it had been recently I would have done. By the time we reached home I was delighted that the swelling has reduced even if it is just for a short time and relieved that a few more medical appointments were behind me.

Keeping grounded

2011-01-11T02:33:00.000-08:00

I had a rather sleepless night and I am thankful for the Kindle so I can read without disturbing Raymond. Actually later he woke too and we talked. Obviously I am frightened because my neck is growing at such an alarming rate and my stomach is giving me trouble as well. This has got to be the first time I have been willing the chemotherapy to commence.

I am sorry to be putting my family through all this. There is nothing I can say or do to make it any better. As I know, it is difficult when someone dies suddenly as everyone is totally unprepared. Even so we don’t know what is going to happen over the next few weeks so we can never really be prepared for this period in our lives.

I am getting used to the nightingales singing as I am often awake between 3.00 and 4.00 p.m. when they seem to have centre-stage. There were also some other unidentified noises of another animal/s so we are never completely alone. I did look out of the window trying to see them but the night was very dark.

Raymond had some photographs printed on the sequence of shots he has taken of the wildlife in the garden over the summer. The deer look so beautiful and at home in the garden. It was also interesting to see how their coats change in colour according to the seasons. Our favourite pictures have got to be when the young fox appears and stares at the deer, trying to play with them and obviously thinking he is some sort of cousin. As the pictures are on film I am sorry that I can’t post them.

I started the steroids today. I hate them. I do so hope that they won’t change my personality or make me lose or gain weight. As I remember, particularly when I was on CHOP-R chemotherapy, their effects can be totally overwhelming and unwelcome. However, if they play a role in helping to stabilise or reduce the swelling, then so be it.

We are on a rollercoaster, being taken along by numerous health professionals. We can’t get off because each piece is related to some other part of the total treatment. I feel I am just a patient and I will have to work hard to keep my identity and individuality. The creatures in the garden keep me grounded. During the day there is so much activity and the garden belongs to them really rather than us. Watching the mischievous squirrels trying to steal the bird feed, the way in which the birds look through the kitchen window if we are late putting out their food, Starsky’s playful behaviour in the conservatory, the visiting black cat watching the woodpile hoping the mice will emerge, all help me to realise that life is going on and I play just a small part in it.

The joys of gas and air

2011-01-10T08:19:00.000-08:00

This morning Ray and I went to Southampton General. I was due to have a bone marrow aspiration at 11.00 a.m. but true to form they had mixed up the appointments and told us to go and have a coffee. I had the most peculiar Eccles cake imaginable. A true Eccles cake should have light, crisp flaky pastry with a filling of dried fruit. This one was stodgy and the filling tasted too spicy. After that pleasurable start we returned for the procedure.

The nurse who carried out the bone marrow removal was both kind and competent. As it is quite painful and uncomfortable I asked for gas and air which was already in the room. Apparently they used to give general anaesthetics but some time ago discovered it was “better” done using local anaesthetic injections. First of all the liquid bone marrow is withdrawn from the pelvis. The next stage goes deeper into the bone to extract a core.

This was my fifth or sixth and I have to say it was the least painful of them all. I wasn’t offered gas and air at the Royal Marsden which is why the patients dread it, but we are all different so for some people it may be less painful than for others. Ray has been teasing me about the effects of gas and air. Certainly it makes you feel a little light-headed. The results should tell my oncologist just how far the lymphoma has spread.

I think it has spread to my stomach area as I have the bloating which I had when I was first diagnosed. This would mean it has crossed the barrier of the diaphragm. Tomorrow I have the CT scan at the Nuffield which will indicate the spread and location of the disease.

When we came home we were both tired. Ray didn’t sleep well last night but it is more than that. I think there is an emotional toll not only about the procedure, but actually having to go to the hospital. Around us some of the nurses or visitors are light-hearted but we can’t really be, at least not for very long.

As I write this it is just after 4.00 p.m. and it is pleasing to see that the days are just slightly drawing out. The day itself was cold but sunny as was yesterday. It is good to see the trees looking less sombre. I am just about to start taking the tablets which are the precursors to my chemotherapy so it is all becoming very real. We have to hope for a good outcome.

Strength for the days to come

2011-01-09T09:33:00.000-08:00

I am very tired and it’s only 2.00 p.m. I did quite a bit of cooking this morning making a trifle, the filling for a game pie which was a casserole cooked in wine, and baked the pastry bottom of the pie ready for tomorrow. Whenever Jonathan comes down he always offers to do the cooking but as it is such a short visit this time, I don’t want us to spend all the time in the kitchen on Sunday so I have cut down the cooking time for tomorrow but I just don’t have the stamina.

I know I’m very anaemic which accounts for a lot of the tiredness. I am having my blood taken at the General on Monday, but no matter what the results are I have to go ahead with the chemo on Thursday because the swellings are so awful. I am just hoping it will be effective. I shall write a little more tomorrow.

••••••••

I am writing this early on Sunday evening and we have had a really lovely day with Jonathan and Josie. They arrived yesterday evening and left in the mid afternoon but we were able to talk, sit by the fire and have a good lunch. I made a game pie which I have never made before. I looked up the recipes but couldn’t find any single one which I really liked so I made up my own.

Today was very relaxing and cosy but the time quickly went. On one hand I don’t want to monopolise Jonathan’s time at weekends but on the other it was better that he should know how ill I am so we can make the most of the time we do have together, without any regrets. Raymond laughs because Jonathan always analyses the ingredients of meals but it is just like most members of my maternal family for whom cooking was an important skill. I doubt if I am going to be able to cook much like today in the future as I get very tired.

It is difficult letting go, whether it is something like cooking or the teaching I have done for years. Obviously I have built up so many different materials for teaching adults, secondary school pupils and individual learners. It is no use keeping things which I will no longer use and like quite a number of my clothes, they will have to go to a good home. However, it is not all about giving up or letting go; it is about making changes to our lifestyle. Certainly I have done more writing in the last two years than ever before.

The coming week is full of medical appointments culminating in the start of the weekly chemotherapy. It was good to have a weekend together, enjoy each other’s company and build up our strength for the days ahead.

Life is so strange

2011-01-08T01:41:00.000-08:00

I was just starting to write yesterday when the post arrived and I went to open it. It was 4.00 p.m. which is late even for Royal Mail. Just before it arrived I had been thinking how much I had been encouraged by two chatty emails and a telephone call. I like to keep in touch with what is happening in other people’s lives as it makes me feel less constricted. Most of the post consisted of catalogues of items I am not going to buy but there was also a card which I shall treasure. I love phone calls and text messages but somehow a handwritten card is something you can look at again and again.

The card was a map of Venice and, of course, I could not help but think of the two very happy times we spent as a family visiting Venice. The first time we arrived by boat which is the traditional way to approach Venice. The second occasion was by train and far from it being an anticlimax all of a sudden we arrived at the station and came out of the concourse immediately onto the Gran Canal. Immediately all sorts of memories were evoked of the narrow streets, the markets, the masks and colourful headgear.

In fact, in recent days I have been thinking about all sorts of things from the past. Occasionally someone else remembers something which is deep in the recesses of my mind and usually the memories make me smile.

As so much of next week is taken up with hospital visits and procedures, we are hoping to have a good weekend. I decided to go to Waitrose to pick up a few items I can’t obtain locally. It was good to feel like a normal person going shopping independently like everyone else instead of a patient.

I have had a call from my oncologist saying that the chemotherapy will start on Thursday in Southampton. I told him that my throat was swelling more every day and he suggested that as I shall be at Southampton General on Monday, if I am at all worried he will prescribe some steroids. These will be a stopgap until the chemo starts. Whatever my worries on that score, and the underlying disease, I am encouraged by the kindness and efficiency of the medical professionals. So despite the pouring rain, the early darkness and the prognosis, I can’t be miserable all the time and a kind of happiness creeps in. Life is so strange.

Just as I was going to sleep I had a message on my phone from a friend which reassured me that Ray and I were doing the right thing with our practical plans. People are so kind.

The importance of polo necks

2011-01-07T03:03:00.000-08:00

Raymond and I had a long discussion about the practicalities of our situation. It has been something we have avoided with each of us ploughing our individual furrow. I don’t mean we haven’t discussed my treatment and prognosis but there are all sorts of practical things like wills and funerals which, when you are hopeful of a successful outcome, you avoid like the plague. I have persuaded Raymond that once we have tackled these matters I can relax more knowing that I haven’t left a mess for others to sort out and then I can concentrate on survival. As you read this you may think it is all very morbid but I haven’t given up; there is always hope.

I have an up-to-date will but my mother hasn’t; she leaves everything to me and I am her executor. In the normal way of things that would be fine but I don’t know what happens if I go before her. I also want to make sure that she is properly cared for during and after I have chemotherapy. As she is very deaf, she is already very isolated, so I would like to ensure she has visits, letters and telephone messages to the home which I know the carers will pass on to her.

Other people’s reactions to our situation vary enormously. Most of our friends, even quite new ones, have been very supportive but occasionally we have had some surprises where a few relatives have avoided us perhaps out of embarrassment at not knowing what to say. I don’t think what is actually said is so important; it is the act of making contact which is so warming. I think Raymond is going to need quite a lot of support over the next few months – not because he is weak – far from it, but because the situation is difficult and he is so supportive of me.

On a lighter note, I have just looked at my head and neck in the mirror. I strongly resemble a footballer who has headed too many balls. It is a good job it is winter and I can wear polo necks at the moment but I hope the swelling doesn’t get any bigger before the chemo starts.

These last few postings have been rather dark and gloomy because they have been rather factual and all about lymphoma. Fortunately, in every day there is some humour and pleasure and we shall never give up hope.

The way ahead

2011-01-06T02:25:00.000-08:00

I was awake for a long time on Tuesday night and Raymond was unable to sleep much either. In order to keep going he has always seized upon the encouraging remarks made by the doctors because it is something to cling onto. It’s not that he has his head in the sand but he doesn’t want to be morbid and upset me.

We travelled to the hospital along the shore and could see two Cunard liners in port. Later as we drove past the docks we noted that four other cruise liners had come in on the morning tide. I can hear their hooters as I write this. All are sailing on the evening tide and it will be quite a sight for anyone standing on the shore. The vessels are travelling to different parts of the globe taking with them thousands of happy passengers on board.

At the moment Ray and I are neither happy nor hopeful. I had my blood taken and a chest x-ray at the hospital. Both were on screen by the time I saw Dr M. He had discussed my case with the head of radiography and both agreed that further treatment was not really wise. On examination Dr M could see that new swellings had appeared.

As ever he is very organised, has contacted BUPA to put forward proposed courses of treatment for their approval, has organised my bone marrow aspiration for Monday at Southampton General and will arrange for a CT scan at the Nuffield. We discussed the various chemo regimens still available to me. As I have had so much treatment in the past two years, whatever is chosen will not be a full strength version, particularly as my platelets are low. It has been decided that I shall undergo weekly chemotherapy. The first session has to be at the General in case of a bad reaction but subsequent blood tests and chemo sessions can be carried out at home. I was pleased that BUPA actually suggested that even before we requested it and that their reason for it is that patients prefer it, not the usual ‘because it’s cheaper’ which is the common mantra these days.

Dr M says that all these arrangements are subject to his discussion with Dr P at the Marsden. There is a lot of mutual respect but they need to be in touch to be certain which drugs I will be taking and proposed lines of treatment. However, discussion notwithstanding, it looks as if next week will be busy with medical appointments. Obviously I am not happy about losing my hair again, it having only just grown in but far more important and ominous is the knowledge that any of these forms of chemotherapy has a 30% chance of success at most.

Once again we are gambling but in the back of my mind I know that previous treatments have never been completely successful for me. Remnants of the mantle cell lymphoma always remain.

Outside all the hooters and sirens of ships in the port are sounding out and fireworks are being lit. It is a time of celebration for so many individuals and good to see the port busy with liners once again. Life goes on.

I am in a place where I have never wanted to be

2011-01-05T01:56:00.000-08:00

I am writing this on Tuesday evening after my last piece was posted. I have to do something or I shall become very upset. My oncologist rang just after we returned home and I have an appointment to see him tomorrow (Wednesday). Prior to seeing him I shall have my blood taken so the results should be with him when he sees me at 1.30 p.m. In addition, I shall have a chest x-ray. He has had a word with the head of radiography who confirmed that more radiotherapy can be given to reduce the neck swelling but further treatment of the throat would cause lasting damage which they want to avoid.

It all comes down to whether the lymphoma is isolated to the throat/neck area or whether it is apparent elsewhere. This may mean a bone marrow aspiration which is not pleasant. However, it could be that lymph nodes elsewhere are affected without the involvement yet of the bone marrow. At all events if there is disease present anywhere else, the most sensible course of action would be chemotherapy. Unfortunately, there is no guarantee that any of this will work. The lymphoma is now more resistant to chemo and is growing back more quickly. I am in a place where I have never wanted to be.

After I was told that the transplant had not prevented the return of the lymphoma, I was informed that the future was uncertain and that it might be slow growing and there were a variety of treatments still to try. I think we can dismiss the idea that it is slow growing. I know that the medical personnel will do their best and try to keep up my spirits but it is not easy right now.

The festivities of Christmas and New Year have kept me going and apart from my thoughts in the small hours, I have managed to keep everything in proportion. Whilst I try to be positive, I can’t say I am optimistic. However, if I succumb to self-pity, it affects all the family so I must pray for the strength to cope and I hope that any regular readers of this blog will be kind enough to pray for that too.

This is the most difficult journey of all. I know that there will be good times and moments of laughter as well as tears. Other people in similar situations have maintained their hope, faith and good humour so I have plenty of examples before me. Writing should help to keep me better balanced. I don’t usually stay miserable for long as something pleasant invariably crops up not necessarily for me but for other friends and members of the family.

*******

I wrote all this yesterday. I had received a couple of telephone calls which really lowered my spirits and Raymond was out for a short while. Although he is affected by all of this, he tries so hard to keep me positive. I did consider not posting this but I am not always strong and this indicates the way in which events have an emotional toll. I am feeling stronger today because we are actively doing something and we will take part in the decision making.

Britain is back to work

2011-01-04T05:52:00.000-08:00

Britain is back to work today! I telephoned Southampton General and left a message for my oncologist about my neck. He will be in tomorrow so we’ll see what he advises. I don’t know how the growth in my throat has been affected by the radiotherapy but I don’t like the way my neck is swollen. I think it unwise to leave it until February when I am due to see him next.

I have to say it is always worse when I am lying awake at night. Usually I have one or two hours sleep at the beginning of the night and then wake up. When the nightingales start singing I know the time is about 3.00 a.m. They go on for a couple of hours. The time between 3.00 a.m. and 5.00 a.m. is the worst for being awake and worrying. Ray always tells me I can wake him and sometimes he is awake for part of this period himself, but I don’t want to disturb him as he has things to do and really keeps the show on the road.

I have taken down the last of the decorations and put them away. We both like to go through the cards again as often there are messages in them which sometimes we don’t take in just before Christmas. Ray has been taking some of our excess rubbish to the recycling centre; we seem to accumulate paper and cardboard boxes. I have a few bags for the charity shop so if we are able to deliver them this afternoon the house will be much clearer.

Earlier on in the day Ray took Starsky to the vet where he had two injections. He is really very good and jumped into the pet carrier of his own accord. What with everything else it meant that Ray was busy this morning and all the birds collecting around the feeders were giving meaningful looks to us in the kitchen. It was quite uncanny so I dropped what I was in the middle of doing and went out to feed them. It is still quite cold although we have adjusted to the colder weather, so I think they are glad of our efforts.

We shall do a few errands this afternoon but I am not venturing into Southampton to the shops. I know a number of people who have been affected by the flu. It doesn’t seem to have been a 48 hour infection and some have been bed-bound for a fortnight. On the way back we will call in at the farm shop to stock up on fresh fruit and vegetables. Although we enjoyed the festivities, it is also good to see everything getting back to normal.

Seeing the light

2011-01-03T03:27:00.000-08:00

We now have security lights on the garage, the work having been done over the weekend. Raymond is particularly pleased but I’m not sure the deer will like them very much if they venture into the front garden in the night as they occasionally do.

I have done quite a lot of turning out of cupboards in recent weeks. There have been many trips to the charity shops with clothes I no longer wear and books I do not wish to read again. I hate the thought of waste so I hope they will be useful. When Jonathan telephoned earlier he said he was going to do some tidying and that inspired me to tackle a cupboard containing lots of videos. We have nothing to play them on now and many date from when I was teaching so I went through them all but I’ll let Raymond decide what he wants to retain from his collection. What I did find were some DVDs I had been searching for. I think I must have put them in the cupboard before I went into hospital when I was trying to rationalise everything. Jonathan will be pleased as there are some he has been asking to see every time he has visited.

In many ways it has been good that we have all had a few days holiday, respite from the usual cares, telephone calls and letters to be written. Business really does come to a standstill at this time. However, tomorrow will see a gradual return to normality. I have enjoyed being able to relax but relaxation is only really pleasurable for me if it occurs after I have done something and you can’t break the habits of a lifetime.

Over the Christmas period a paternal cousin gave me a little piece of information to go into the massive jigsaw which is my background. Furthermore, she thinks my father’s sister knew or guessed about my conception. In recent months I have not gained any further information until now and it has been somewhat discouraging. Some of my paternal cousins found out about my conception from the Daily Telegraph article in December 2009, but I have been very tentative about approaching other members of the family.

When I have done in the past, there is too much subjectivity and a feeling that as I grew up in a loving family, it shouldn’t really matter. Those of my parents’ generation clam up altogether as it is a taboo subject to them. I have always reassured them that I know my parents loved me, but I could and should have been trusted with the truth. I don’t believe I shall uncover much more at this stage but the medical history would have been valuable for my son and daughter. I am hoping to talk to some other relatives on my maternal side soon whom I do not see very often and perhaps, just perhaps, they will understand how I feel and be able to add some information of their own.

Throwing more light on the subject is always useful.

A good beginning to the year

2011-01-02T04:42:00.000-08:00

My mother asked me some very direct questions about my health when she came to see us. I told her that I had enlarged glands in my throat and base of my tongue and that I had received radiotherapy. I didn’t say anything about the transplant not having worked in stopping the return of the lymphoma but no doubt she will make that connection. It is unlikely that she will raise the point as she knows I won’t lie to her; I have just not wanted to worry her. Fortunately, as it is some time now since we learnt the significance of the return of the disease, I am less emotional and would be more able to handle the discussion.

I say discussion, but of course we can’t talk as she is so deaf. I have to write almost everything down so that it is difficult to have a continuous conversation or explain things in detail. I do regret this as I have always had a good relationship with her and was able to talk to her about so many subjects and could appreciate her wisdom, experience and good humour.

She was thrilled with her presents from Jonathan and Anna. She has a great bond with them both. I think this really stems from the time she spent with them when they were younger. She would come with us for walks in the woods, New Forest or along the shore. If I was working she would look after them, telling them stories and acting out games in which she was always the ‘baddie’.

She was fascinated by my Kindle. She is a great reader herself and knows I love having plenty of books around me. She was intrigued to know that I could download books onto a machine small enough to put into my handbag. Things have changed so much in her lifetime and she remembers her own mother taking her to see an aircraft very early on – just in case they didn’t last! Later on two of her brothers were involved in the aircraft industry and her younger sister helped to build the Spitfire at the Supermarine Works in Southampton during World War II.

In the evening we went to a nearby restaurant where we had a really good meal. The staff seem to stay there for a long time and one of the waiters always enquires after Jonathan and Anna. There weren’t so many people as there would have been on New Year’s Eve so it was very relaxing and good to do something normal.

I do so wish the throat swelling would go down. Dr P warned me on Monday that it could grow back very quickly so it may be that I haven’t had enough radiotherapy. I know radiotherapy is very effective against mantle cell lymphoma so perhaps I shall have to have more treatment. In other respects I am feeling quite well – it’s all relative as other cancer/lymphoma patients will appreciate.

First day of 2011

2011-01-01T01:40:00.000-08:00

The start of a New Year is so full of promise that there is a buzz and a feeling of making a fresh start which is highly infectious. It affects me in this way no matter what the reality may be. The date 31^st December is always special for Raymond and me as this is when our daughter was born. I remember the icy path to the car as I set off for the Princess Anne Hospital. There were no parties for those of us with new babies, but being on the fifth floor I could look out and see snow on the hills far beyond Southampton. It was a thrilling time and I have to say that the period when our children were small was a time of great happiness.

When I was younger, or at least a little younger than I am now, I never regretted the passing of the years; I never wanted to go back to a younger me. I felt, and still do, that every age has its difficulties and its rewards. As we age, there is a quiet confidence we didn’t possess when younger and we can take pleasure in the experience we have in our profession or hobbies. It is sometimes sad when circumstances mean we can’t use that experience but I am a firm believer in new doors opening.

I always hoped that when I retired I could ensure that my horizons did not narrow. We wanted to travel more and I planned to study for my PhD. After spending years busy working outside the home, retirement meant being able to spend more time together. Well the best-laid schemes don’t always materialise and perhaps I’m not the best judge of what is right for us. I do know that as a family we’d like this to be a good and memorable year.

This morning my mother is coming over for coffee and I look forward to seeing her. I have presents to give her from Jonathan and Anna so she will be delighted. Later this evening Raymond and I are going to one of our favourite restaurants. We hope it won’t be as crowded as it would have been last night but we think it will make an enjoyable start to the year.

A Happy New Year to you all.

Last day of the year

2010-12-31T07:59:00.000-08:00

Last year at this time I was in the middle of radiotherapy and snow was imminent, familiar themes in December 2010. The main difference was that then I was preparing for the bone marrow transplant and we were all full of hope. In my letter to my donor I thanked her not only for giving me her bone marrow cells but also for giving us all those extra months of hope.

In February after lots of planning I went into hospital for five weeks. Nothing can prepare you for the isolation and the perpetual transfusions of drugs, platelets, blood etc. The long sleepless nights were difficult and the uncertainty of the outcome cannot be underestimated. However, on the plus side the staff understood our problems only too well, the chaplain visited me regularly to chat and to give me communion so I didn’t feel so cut off and my family were a constant comfort. If they couldn’t visit, they telephoned or left messages so although I was in isolation, I was connected to those I love.

Coming home was wonderful, but my family had to work hard to prepare the house so it met all the clinical standards and it worried Ray when I had stomach upsets and couldn’t eat. I was unable to sleep very much but I had all sorts of practical help from friends and very gradually I began to feel better. Then there was the onset of Graft Versus Host Disease, welcome in one way because the medical staff hoped it would resist the lymphoma, but causing enormous discomfort. For weeks I resisted going back on to the immuno-suppressant drugs but in the end I had to accept the fact I couldn’t go on.

The most difficult period was waiting after the scan to see if the enlarged nodes were the result of the GVHD or mantle cell lymphoma. The news that the lymphoma had returned despite the transplant was devastating. However, life goes on and we have to make the most of what remains for me. Although it is never far from my mind, life is going on all around me, people are doing interesting things and there is a lot to laugh about.

Perhaps because so much time has revolved around medical procedures, I have specially enjoyed my trips to London, Wales and France. I treasure the weekends when the family visit and time spent with Raymond whatever mundane tasks we may be doing. The journey I have embarked on now is different from the one I expected and there is no road map. The medical staff are doing all they can to prolong my life and I am most fortunate that I can trust their best intentions for me.

Tomorrow is the start of the New Year and is full of promise for so many people. For some of us it is different. I find myself going over so many memories in my mind. The turn of the year is a time of remembrance, nostalgia and for people like me – a little melancholy, something I felt yesterday on our journey to the Marsden. And then I think of John Keats knowing he was going to die of TB at 26 yet composing the poem To Autumn – melancholic but acknowledging the beauty not just of the season, but of that time in his life. May the coming year be special for us all.

Thinking beyond myself

2010-12-29T01:01:00.000-08:00

In many ways the interval between Christmas and New Year is a time when not much is accomplished in the world of commerce – unless we think of the sales in the shops and I’d really rather not. No doubt with the imminent rise in VAT there will be lots of shoppers but I’ve had my fill. In other respects there is a sense of limbo and for a fortnight this period is used as an excuse to avoid decision-making.

Raymond wants to write to his solicitor to see if he can pin him down regarding the progress of the case. He would like a date for the court hearing but I can’t see that happening for months. I don’t see there being much point in writing this week as no one will be there so I have suggested the beginning of January when I hope they will be full of resolution in all senses of the word.

We go to the Royal Marsden tomorrow for my check-up. I am not sure whether the growth on the side of my neck is going down or not. Sometimes it swells as does the other side in sympathy. On balance I think it has reduced a little but I can’t determine the effects of the radiotherapy on the growth at the base of my tongue as it is too far down. During the past week I was quite stressed in the wakefulness of the night, thinking it was all getting worse and I would have to contact the oncologist. Usually by the morning I could rationalise my fears.

Outside is grey and misty. If there is any traffic, it is muffled by the fog. I think I preferred the snow in some ways as now it looks so gloomy and the sound of the fog horns doesn’t lift my spirits. I find the prospect of 2011 quite daunting as I recall my oncologist’s words. There is so much still to do. I am not thinking about myself; I have shelved any ambitions, but I do feel responsible for my mother and the family. I know my family members are all capable people but that is not quite the point.

I really enjoyed visiting Wales recently as it is some years since I have been there and the countryside is very pretty. I don’t envisage much future travel abroad because of the unpredictable nature of my illness and the difficulty in obtaining insurance. However, I should like to see some more places in Britain and this could be one of my targets for the New Year. Hopefully, by getting out more I can think beyond myself which wouldn’t be a bad idea!

Christmas in the snow

2010-12-28T03:24:00.000-08:00

We have just returned from spending a lovely Christmas with Anna. It takes a lot of planning when you’re are working long days as I remember but she had thought of everything. We were able to relax, eat well and enjoy the warmth inside whilst looking at the snow outside.

With all the snow and traffic chaos in the week before Christmas we had to plan carefully including survival rations, shovel and blankets if the weather turned really bad after we had started our journey. We never contemplated not starting! Having the Jeep does give you more confidence but it is possible to get stuck in lines of traffic or find the way blocked by a jack-knifed lorry so we were relieved that on the Thursday when we set out, there had been no further snow storms. Raymond had several attempts at packing the Jeep as we had several items for Anna to bring, plus presents and our bags.

On the South Coast the snow had completely disappeared but by the time we were near Winchester, just 12 miles away, the fields were completely covered in snow. We have protection from the Isle of Wight and the geographical advantages of being in the lower part of the Hampshire Basin and close to the sea. When we reached the Ridgeway, we found the trees also still with white branches, not dredged in snow as when it first falls, but enough to give the trees a black and white architectural quality. As we drove further north and into Wales the snow which remained was quite deep.

On Boxing Day Dave arrived and Ray and I made the relatively short journey to Llangollen. It really was a lovely drive and on arrival in the town, we went to the Royal Hotel overlooking the River Dee and had coffee and toast. The views were absolutely incredible and the town is full of character. Later in the day we all played on the Wii which was good fun.

We set out on our return journey with plenty of food packed by Anna. We had brought her rabbit, Starsky, with us and he was placed carefully in the back with his food and water. He proved to be a good traveller. Rather than driving down the A5 which was the way we had come, we decided to go via Nantwich and take the M6. The drive through part of Cheshire was very pretty but the M42 and M40 were very congested and this really added to our journey time. The weather was varied with driving snow in North Wales, then sleet and rain. Once we were south of Oxford, the traffic eased and the drive through Hampshire was relatively easy.

I had packed the pills I normally take on a daily basis, plus all the others I might need if I became ill. Taking all these precautions may sound very cautious but it is like an insurance policy, the just in case factor. I couldn’t help a little melancholy creeping into my mind on our journey home and although I try to banish it, I think it is inevitable.

Making connections

2010-12-22T08:50:00.000-08:00

The snow has disappeared altogether but there is a damp chill to the air. By now we are more accustomed to the cold weather so few people complain. I did my last shopping today but it wasn’t too crowded and people all seemed to be in a good mood.

I am just pausing for five minutes from what I have been doing to write my final blog before Christmas. I read an article today about the large numbers of people who blog about their illnesses. The gist of the piece was that writing helps to come to terms with what is happening and in a world where things are done to us as patients, it is a way of keeping some sort of control, a corner of life which is one’s own. The writer commented how friends and family can keep in touch with one’s progress; it doesn’t stop them calling but it saves one’s nearest and dearest from constant repetition.

It also means that we make new encounters and sometimes reconnect with colleagues and friends from the past. This has certainly happened for me.

Most of the blogs I have read are not gushing with emotion or self-pity. They vary enormously and some include references to other sites. With single-issue blogs or writing about a particular lifestyle, far from just sending words out into the stratosphere, it is amazing what a small world it is and the connections which exist.

Sometimes people encounter a problem which they think is unique to them and so they search on the internet for someone else going through a similar experience. A blog gives them a personal connection and understanding which helps much more than perhaps a learned, factual article.

In my situation I have grown to understand how important all these connections are. The house is filled with cards from some while from others we receive telephone calls, emails and this year I have just received a lovely smilebox and e-cards.

I am looking forward to being with most of the family this Christmas but even those who are far away are in my thoughts. I hope that readers who have to travel or await relatives who are travelling will find the journeys are safe. May you all have a peaceful and contented Christmas.

An old fashioned winter

2010-12-21T04:25:00.000-08:00

This is an old fashioned winter with cold temperatures and snow. People are really dressing for winter this year, I’ve noticed. This leads me to my first good news. My skin, which was so itchy and painful with the Graft Versus Host Disease has now cleared up sufficiently for me to be able to wear wool. It is so difficult to be warm with layers of cotton tee shirts and/or jackets which restrict movement.

Dr P increased my dosage of ciclosporin (anti rejection drug) to assist with this but, since the reappearance of the lymphoma, is now trying to reduce it. Unfortunately, one of the side-effects is stomach upsets which bothered me for most of yesterday – not so bad if you are at home, but being out or visiting does present a problem.

It seems for every bad thing that has happened there is also a good one. I developed a ferociously dry mouth with the radiation on my throat and GVHD. I was carrying around bottles of drink in my bag. As my strength is non-existent at the moment, on two occasions I didn’t put on the caps firmly enough and on Saturday I ruined my phone. Raymond was very understanding about it and bought me a new one. This illustrates a fact which is probably clear to everyone else but me. I think I am coping with all this, but I’m not really, but everyone goes along with my delusions and I receive tremendous support.

A good point is that the radiotherapy is over and although I am tired, I can feel that the growth on my neck is slightly reduced at the base of the throat. I have no idea how the node at the base of my tongue is doing though. I was looking as if I had serious goitre so being able to wear polo necks is very useful.

During the month of December it is so good to receive cards from friends and family, particularly those I have not seen for some time. I have also been touched by some very understanding letters. At such a busy time of year, I do appreciate their kind words.

We have done most of the shopping now, the cake is iced and the gammon cooking, so I am spending the afternoon catching up with my correspondence and wrapping the last parcels. Then I shall listen to some Christmas music.

A festive weekend

2010-12-19T04:32:00.000-08:00

This weekend is such a tonic. Today I am having a lazy day, just sitting by the fire and catching up with correspondence. Earlier Ray took Jonathan to the station; it has been a real treat having him with us.

After a week full of medical appointments I was looking forward to the weekend and seeing the family, but unsure how much energy I would have. Fortunately, I was able to prepare the red cabbage, butternut squash and the trifle in advance. Jonathan took charge of the roast potatoes which he cooked in goose fat with garlic and fresh rosemary from the garden and they were really crisp and golden. I cooked a brace of pheasants, a mallard and sausages wrapped in bacon. To add to the wintry theme we had chestnuts and prunes soaked in Armagnac. Jonathan did all the carving and it all came together and was kept warm in the AGA.

Raymond did the running around picking up my mother and Margaret and we all enjoyed a festive meal with the rooms lit by candles and exchanged Christmas gifts. Some of Jonathan’s from Amazon he had arranged to be sent here (it is difficult to have them delivered to a flat) and he planned to wrap them but the snow has delayed some.

In the evening when my mother and Margaret had been taken home, we sat by the fire and watched Strictly Come Dancing and a documentary made by the company for whom Jonathan now works – Touching the Void. The latter was fascinating and beautifully photographed.

Raymond has some new outdoor boots and is trying them out by taking a walk in the woods. I had thought the snow was disappearing, but as I write I see a few fine flakes in the air so I hope it doesn’t come to anything. Jonathan is driving to the West Country later in connection with his work and we advised him to take a shovel. It is funny, after decades of mild winters, we have had two in succession which make us remember all the travel advice of our youth. Deliveries didn’t stop then; people used winter tyres and/or chains on their vehicles and postmen wore sensible boots.

Enough of nostalgia! There are so many benefits of living in the here and now including warm homes. Here’s to some relaxing days before Christmas.

With family and friends

2010-12-17T09:53:00.001-08:00

I really don’t like snow before Christmas except the sort that flutters down, looks pretty but doesn’t settle. It upsets the post and everyone’s travel plans. I think a number of firms use it as an excuse for their inefficiency. I think we had a light flurry of snow over night but it didn’t stay because the temperature rose to 1 degree C. My main fear is not about snow here, as it is never that difficult, but I do want us to be able to travel to North Wales for Christmas.

Anna travelled by train to Exeter this morning. She is teaching a module at the University so was armed with parts of skeletons. Her journey down to us yesterday was very difficult as the trains were delayed. Jonathan travels down from London this evening by train and I am just off to prepare his meal.

We are having a family day tomorrow. I wasn’t sure how I would be this Christmas, and as it turns out, I am very tired. I have done a lot of the food preparation ahead of schedule but I really ran out of steam halfway through the afternoon. As it is very cold outside, Raymond had lit a fire so I sat in front of the fire doing nothing for two hours. Unheard of for me during the day.

However, all the medical appointments are finished with until 30^th December. It took two weeks to get an appointment for the nurse to take my blood at the surgery. Both Dr P at the Marsden and Dr M at the General were a little concerned at the way my blood count is fluctuating. Dr M. even thought I might need a blood transfusion but I am hoping not. Of course, anaemia is one of the reasons I am tired and I find I am getting puffed out even after a small effort such as climbing the stairs. Normally I walk very quickly so I am having to slow myself down as I can’t keep it up.

I am looking forward to a good relaxing weekend with family and friends.

The run-up to Christmas

2010-12-16T08:47:00.000-08:00

I had been dreading this week but the worst is now over. We went to the solicitor’s office first thing this morning and Raymond went over what he had written and added to his witness statement with the solicitor’s secretary who will type it up. It meant an early start to the day but at least one of the jobs was over by about 10.00 a.m. We went to the General Hospital and had a full-blown English breakfast – I quite surprised myself and Raymond too as it certainly wasn’t very like me.

We arrived at radiotherapy about 30 minutes early and, as I had logged in my arrival, they surprised us by seeing me even before my appointment. I am very glad that this part of the treatment is over, at least for the time being. Unfortunately, I suffer from dry mouth since the GVHD and this has worsened because of the radiotherapy. I bought a bottle of water when I had breakfast not because I was thirsty, but to moisten my mouth. I didn’t put the top on properly so everything in my bag was soaked including a paperback book which I am trying to dry off on the AGA.

What I was most worried about was my phone. On Saturday I left it in the Marks & Spencer café when we were visiting London. I only discovered its loss because, once again, I failed to tighten up a bottle of apple juice sufficiently and it spilled into my bag, so I had to check the contents when we arrived back at Jonathan’s. We dashed back to where we were sitting but some lovely person had handed it in to Customer Services so I was very relieved.

Today the phone didn’t suffer too much from the water spillage. It was a little temperamental at first but then settled down. I have had to promise Raymond that I will let him buy the bottled drinks and screw up and unscrew the caps.

Anna is coming for a brief visit tonight as she is going to Exeter tomorrow. Raymond got the call to sort out a couple of bags which she left in the garage containing part skeletons. She is travelling down to Exeter by train and I think will raise a few eyebrows with her luggage. In the evening Jonathan is coming and I have enjoyed preparing the guest bedrooms to make them look festive.

Most of my internet purchases have arrived, thankfully, as I think many late shoppers will find their post is delayed because of the snow. We have none here but Anna says it is falling and settling in North Wales. Hopefully, we can put aside medical matters for a little while and enjoy the run-up to Christmas.

Early mornings

2010-12-15T11:34:00.000-08:00

We rose early to drive to Southampton General Hospital and we arrived on time for radiotherapy at 9.00 a.m. but they were “checking my records”. I think they were just unprepared so I went in at 10.00 a.m. The staff are very nice but have no concept about punctuality. Then I had my blood taken. I was number 79 but the digital counter seemed stuck on 72. Then they did four patients which obviously was too much for them. So everything stopped for 20 minutes and Raymond went to look. They were admiring one of the doctor’s shoes but after some intervention from Raymond, were kind enough to take my blood.

We then had a long gap as I was not due to see Dr M until 3.00 p.m. so we had a little lunch and went to Waitrose to buy some pheasants for Saturday. When we returned to the hospital we were still 45 minutes early but decided to go to the Private Patients Oncology Suite as we thought we would just sit and wait. Dr M. was there and said we should come in straight away. He also said that if we ever had to come in for other treatment we could always ring him and he would make time to see us.

Dr M. is a breath of fresh air. He works very hard but is truly efficient and he was very surprised, if not shocked, that it had taken so long for radiotherapy to contact me and commence treatment. He said that the neck growth had doubled in size since he last saw me.

Raymond has finished his witness statement which is going to be typed up by the solicitor’s secretary so we shall have another early start tomorrow. Goodness only knows what she thought of the additions to my statement which I emailed to her yesterday. I was honestly not sure what was required to be added to my own statement and what was meant to be inserted into Raymond’s but shall we say my tone was a little acerbic. I hope then we shall be shot of them except that no doubt we shall have to brave Southampton once more to sign them.

I have just really started thinking about Christmas and putting up some decorations. I haven’t been able to turn my mind to it until now but now the parcels are wrapped and I have just put marzipan on the Christmas cake so we are on our way. Furthermore, we have a really good few days with the family to look forward to.

Witness statements

2010-12-14T02:41:00.000-08:00

The fog was temporary last night and then the skies cleared. The doe and the fawn spent the night on our back lawn and in the morning were munching on the fallers which we haven’t cleared. This morning is cold and cloudy but there is the possibility of snow in some parts of the country.

I do hope we don’t have another serious fall of snow. So many people are reliant on their post for business and receiving the parcels for Christmas which they have bought on line. We are still missing two or three and if it snows the post grinds to a halt.

Today is the start of a busy week. I had great difficulty a couple of weeks ago arranging flu jabs for Raymond and me. Mine is still going ahead this afternoon but the surgery rang yesterday to cancel Raymond’s appointment for Wednesday so we are unsure when he will have his.

Raymond is currently working on his witness statement which is going to take some hours. Surprisingly the papers from the court are actually undated which makes his preparation difficult. I have to start mine too shortly. I am rather unsure about the wisdom of the changes they want made since I have tried to be objective and I don’t really want to introduce my personal feelings into the statement. However, we have been affected so many ways, not least emotionally that I must accept that the barrister and solicitor probably know best.

I hope that the case will not dominate the day as I have quite a few errands I want to do before the weekend. I am looking forward to having the family at home despite it being a busy few days prior to their arrival and the after-effects of the radiotherapy are, as yet, unknown. I know Jonathan will help with the cooking so I don’t have to worry about that but I do need some good ingredients.

Once this week is over I really feel I can look forward to Christmas.

A restful weekend

2010-12-13T10:06:00.000-08:00

We have just arrived home after our visit to the Marsden. The weather was cold and the freezing fog never lifted. However, by the time we reached Hampshire, the air was clear and the sun was shiniing but it is still cold and I understand the arctic weather could return in the next few days.

My blood counts were better today and we think this is due to the GCSF injections Raymond has been giving me. The white blood cell count was out of the danger zone, which at this time of year had been rather worrying. As usual despite the chill outside, the staff at the Marsden were warm and positive. It is so good that we are known as individuals

We were lucky this morning as we only had to travel three miles from Mitcham to Sutton for our appointment. We stayed with Jonathan and Josie for the weekend and it meant a much easier journey for us this morning. We were amazingly well fed and they had made the flat really cosy which was so good as I really feel the cold now.

We have a week full of tasks and medical appointments so it was wonderful to be away where we could not be tempted to do anything. Yesterday we went to Richmond Park. It is unbelievable to think this vast beautiful area is within London or Greater London. We saw several herds of deer with large numbers and they are quite tame as they are used to visitors. They are larger and lighter in colour than our muntjac deer. They are possibly roe and fallow herds.

For lunch we went to Pembroke House in the park, just for sandwiches and hot drinks, and the building occupies a superb location on possibly the highest point. We had a table within a large bay window and everywhere we looked up to the horizon were coppery trees.

We had some wonderful meals and that evening had pheasant with a good red wine sauce, perfect for this cold weather. We were able to relax, read, chat and watch t.v.

I don’t see any high spots in the week ahead. It is dark as I write and the fog has rolled in so I can hear the fog horns. Hopefully, by the end of the week the worst will be over and we can look forward to seeing Jonathan, Margaret Stone and my mother for a pre-Christmas celebration.

Preparing to relax

2010-12-10T11:55:00.000-08:00

Ray finished the accounts and took them to the accountant. Then he started on the mountain of requests from the solicitor for information he must find and amendments to our witness statements. We had asked before we signed them some time ago, if there were any changes needed so to have all this work heaped on us just before Christmas is dispiriting. The solicitor had said we could do it over the weekend! What we need is the relaxing weekend we have planned so it will all have to wait until Tuesday.

Starsky, Anna’s rabbit, went to the vet’s today. He is always very well behaved and it seems he is improving, has put on a little weight but needs to go back in a fortnight. We have been advised he needs to eat more hay rather than the celery and carrots we had occasionally given him along with cereal. It makes sense but he tends to use the hay to make a nest.

I managed to complete a few errands this morning before tiredness set in. My mother came over in the afternoon and I was able to tell her that all the presents for friends and family have been bought and wrapped up, including presents for the carers at St Elizabeth’s. She was very pleased and said, “What would I do without you.” There is just nothing I can say. She is glad I won’t have to be doing all the cooking and organizing on Christmas Day as I think she can see I am tired even if she doesn’t know why.

Anna rang to say she had a cold and reminded me that this always happened to me at the end of term. We push ourselves on and then just when we start to relax, our guard comes down and we catch something. She is glad we are having our flu injections next week as it incorporates the swine flu element which may still be around this winter.

I continue having the GSFC injections. I think they are given to a lot of lymphoma patients. Somehow, just when you think you have experienced everything to do with your illness, they come up with something new which, however good it is for you, is invariably uncomfortable or painful.

Conserving energy

2010-12-09T07:23:00.000-08:00

Today, as far as the weather is concerned, has been altogether brighter. The sun is out and it is slightly more humid and less bitterly cold. I went out earlier and did some shopping but grew tired after quite a short time and came home. Thankfully most of the presents have been bought on the internet and I still order groceries in the same way too. However, there are always the little things which I need to see and touch or which would be very heavy on postage relative to cost. So it is a balancing act between postage and petrol plus parking.

Most of the parcels have arrived by now so I have been able to do the wrapping. However, there are always the odd one or two articles which take a long time and the snow has probably slowed down deliveries in some areas. As I don’t enjoy fighting my way through crowded shops, choosing presents online has been a real bonus.

A letter arrived for me from the Marsden today. Dr P regularly reports on our appointments with him to both my G.P. and Dr M with a copy to me. I always have to take a deep breath before reading it as seeing his observations in print is a lot more serious than the gentle way he talks in his consulting room. However, I noticed a little extra note to Dr M at the end asking him to urge my radiotherapy as the tardiness was concerning me. So I think both of them have been instrumental in speeding up my treatment.

Most of the cards are now written but it took me ages as my handwriting is now so laboured but it was something I could do while Ray was working on the accounts. The latter are now almost complete and Ray will take them to our accountant in the village which is pleasing. Although the solicitor really wants us to work on the personal statements over the weekend, it is too short notice as we have already planned to spend time with Jonathan and Josie.

We shall need a relaxing weekend as next week is full of medical appointments but at least things are moving.

Our faith in the law

2010-12-08T07:18:00.000-08:00

Raymond is devastated. The cause is once more the case against Biffa. The telephone conference between the Judge, Plaintiff’s side and Defence took place on Monday afternoon. Although the Judge had given directions about documents to be disclosed, it looks as if these can be ignored with impunity. Raymond was asked what dates we would not be available for next year. I just felt like saying I have no idea whether I shall be available for any dates next year. Next year is another country.

When we realised that the transplant had not prevented the lymphoma from returning, Raymond consulted his solicitor to urge the case to be expedited. He was assured it would be wrapped up this year. I am afraid I have never thought that; it will outlive me. All that is happening is that a number of insurers and lawyers are being enriched and we are being caused immense stress but all along Ray has been told that resolution is just around the corner.

I have no faith in the law whatsoever. If you read Bleak House you can see nothing has changed in over one hundred and sixty years. It may have appeared to be a black and white case, but there is no such thing and these cases are deliberately strung out for the benefit of the legal professionals. Raymond is naturally haunted by the fact that he is the innocent party and the results of the accident have affected him physically, mentally and his ability to carry on with the work he loves.

Should we have cut our losses? In the first few months that might have been possible given the right offer, but unfortunately, the longer something like this drags on, the more you realise that the damage caused can be permanent and has not cleared up after twelve months as we might once have hoped. Raymond has a future which he must safeguard. I feel like screaming whenever the case is mentioned but I have to work to a different agenda. He gives me so much help every day that the least I can do is to listen, advise and hope that the legal profession will act in favour of fairness – just once.

*********

I wrote the above when I was very, very cross so I usually don’t post anything like that immediately. This morning we heard from the solicitor that there are a number of changes to our personal statements which have been suggested by the barrister. The lawyers are very good at inaction but then they want a lot of work and analysis by yesterday. Ray is at the moment doing the accounts for submission on Friday and I am in the middle of radiotherapy. The requests came in the form of an attachment and without looking at the length of the downloads I just pressed “print”. Somehow the sight of about 100 bits of paper spewing out of the printer lightened our despondency. It is a quite impossible task and we have no intention of letting it overshadow the run-up to Christmas.

A small victory

2010-12-07T08:03:00.000-08:00

We came back from hospital about an hour ago, both of us absolutely exhausted. It is very difficult to explain why, but Southampton General is not a relaxing place and you always have to be on your guard about something. It is such a contrast to the Marsden where, although the journey is tiring, we have absolute confidence in the medical personnel.

First there is the joy of parking and once parked, trying to extract yourself from the car without damaging the neighbouring car’s paintwork. What larger people do or those with walking and movement difficulties, I can’t imagine. Today I had a mask fitted. As we usually wait a long time for our appointments I was well through my sandwich lunch when I was called.

The purpose of the mask is to ensure the neck remains rigid and in the same position for treatment each time. It is made of mesh, the holes not being dissimilar to those on a tennis racquet. The mesh is heated and placed over your face, neck and shoulders. The radiographers were very good and talked me through the whole procedure. The warm, wet material is a slight shock, nevertheless, but much better after they make a hole for your nose and mouth! Then they mould the mesh to your face and neck by pressing down firmly so that it forms a good fit as it contracts. I was quite glad when it cooled and it was unbolted.

Then we had a wait before I had a CT scan – not mentioned on the telephone to me. Once again the mask was put on and the resulting scan will enable treatment to be planned accurately. Marks were made on the mask so that it can be lined up perfectly for treatment.

Then they made an error. They asked me if it was all right to tattoo me. The last time it was done, I wasn’t consulted at all. This time I had asked the consultant whether it was necessary before today’s appointment and he had said no, so I declined. They really piled on the pressure and I can understand that it makes things quicker and easier for them but why a permanent mark? So they are only dots, not a crown and anchor, but still they are for their convenience not mine. For once I won the day which shows just how vital it really was. I have had enough really appalling things done by medical personnel to my body and even a small victory was good.

Testing the temperature

2010-12-06T12:20:00.000-08:00

I’ve had two consecutive nights where I lay awake so I am hoping sleep will be less elusive tonight as I am tired. Fortunately, my appointment at the General Hospital is not too early but parking is always a problem. No wonder so many of the patients look stressed. Usually it is necessary to have someone else driving the patient as the parking queues can be horrific and it is not unusual to see people diving out of the cars to arrive in time for their appointments.

I have no idea what the mask will be like for my radiotherapy. I know it is meant to keep the neck rigid and it is probably better than being tattooed. However, I keep having visions of the Man in the Iron Mask. As I am rather claustrophobic I am trying to put these thoughts to the back of my mind.

Anna is revising an academic paper she and Karl have written ready for publication. Every so often I receive a telephone call to consider the finer points of grammar. The trouble is that you can live with something for so long that it never seems to sound right and it takes fresh listeners to assure you it is correct.

The snow has virtually all gone now. It was very cold today and I noticed that everyone was dressed very warmly. I understand the temperatures are due to rise as the week progresses but I think before the snows of last winter, many younger people just didn’t have appropriate clothes for really cold weather. This year most of the shops have been full of really bright and modern looking cold weather gear.

Jonathan enjoyed camping at the weekend! I can’t believe it but it must be true. I look forward to hearing about it. I am sure it must be all right if you have full survival kit but it isn’t something I would take pleasure in. I was just so glad that after my shopping trip earlier in the day, I had a good warm home to come back to.

Last year I remember my temperature being raised by the inefficiencies of the radiotherapy department. The way I was spoken to was incredibly rude but we all have to take it on the chin and wait, and wait and ….

Fog descends

2010-12-05T08:36:00.000-08:00

What a change when I look out of the window. A rise in temperatures and some rain have removed all the snow here and instead we have a fog which descended this afternoon and has not lifted. Anna and Dave left fairly early this morning. Dave was driving to Marlborough and took Anna to Parkway Station for her train. I hope the fog doesn’t delay her journey home too much. Rail travel at the weekend is always difficult as that is when they do the engineering work on the line.

Last time I was at the Marsden I asked one of the other transplant patients if he had found his handwriting had been affected by the drugs. It would appear that this is another fairly common side-effect. I can’t control my writing at all. Admittedly, as I do so much on the computer, it might have deteriorated a little anyway but it looks dreadful now. When I was on chemo three years ago, writing became impossible because of neuropathy.

So I put off writing the Christmas cards although I have done the labels. Instead I checked through the presents, most of which have been arriving in parcel form. I wrapped up most of them although my wrapping skills have suffered along with my handwriting. We haven’t had a Royal Mail delivery for days now although I noticed that the commercial parcel carriers managed to brave the village roads.

Now I’ve done the wrapping I can begin to see the other tasks I must do before Christmas. Fortunately, it won’t be as onerous as usual thanks to Anna but I should like to achieve what I can during the coming few days because the following week will be very busy with so many medical appointments.

I have very mixed emotions about this Christmas because of my uncertain health. It is also very difficult for the family and however much they try to mask their fears, we can’t laugh them off; the feelings lurk in our minds even if not voiced aloud. Perhaps we have, as a nation, an unrealistic idea that Christmas must be a time of celebration. I think that we must just be glad to enjoy each other’s company while we can.

The fog horns are quite audible now and darkness is falling very quickly. At this time of year there are only a few minutes of dusk before the daylight disappears.

A family weekend

2010-12-04T04:35:00.000-08:00

We were all watching something together on television last evening and there were extracts from a diary used. Anna said she thought no one who was really happy would write a diary. I suppose it depends on the kind of diary it is. Mostly they are accounts of one’s life purely for personal consumption; others are written by famous people who will use them one day as the basis for their memoirs.

It made me think about the difference between a diary and a blog. A blog is a means of expressing oneself in the public arena. I don’t think people who are living really busy, fulfilled lives would have time to write a diary or a blog. I am sure there are many different motives for why some people start a blog. The reasons for starting mine were probably quite different from my reasons for continuing with it. At first you are just communing with the stratosphere but gradually you gain occasional or regular readers and it is then a means of communicating rather than a venting of emotion.

So can we turn the statement round? Are all diarists and bloggers unhappy? Perhaps many are or there is a particular issue over which they are concerned. Perhaps in the case of their blogs, they become a focus for like-minded people. I have to say that although the events surrounding my health in the last four years have not been happy and knowing my ill-health has caused sorrow to my family, life has not been all bad.

I felt happy to have survived the first very difficult chemo and then to end my teaching career on a high note i.e. during a period of remission. I was very happy during that remission to have holidays with Raymond. I have learned to raise my threshold of tolerance regarding medical treatments and their side-effects even though it may seem I am always commenting on them. I have learnt to appreciate the times when I am reasonably well, the contact with friends and those special times spent with the family.

I was too busy during my working life to write a diary and I don’t think I would have had anything interesting to say. Although there are a number of things I would really like to do, I have a feeling that either medical matters will overtake me, or Ray’s case will be prolonged still further and the latter’s outcome could give us the financial independence to travel more widely. So, rather than looking to some mythical golden age in the future, I must make the most of now. I have to say that this particular blogger is often very happy indeed.

Crucial appointments

2010-12-03T08:13:00.000-08:00

The temperature is quite low today so the snow hasn’t melted yet and the garden continues to look very pretty. The birds were gathering this morning at the places where we have put out seed. The deer too have visited several times over the past few days. They are much more visible against a white background as their winter coats enable them to merge into the trees.

Although I am sure there has been some chaos on the railways, Anna managed to travel down from North Wales yesterday evening and it has been a joy to have her here as it has been a few weeks since we have seen her. This is a weekend for warming foods and I’m glad we stocked up with some good in Waitrose earlier in the week, although if I learned anything from my mother, it was the importance of a well-stocked larder – a very well-stocked larder!

As happened earlier in the year when we had much snow, the postal deliveries have ground to a halt. I know we have a Jeep which makes it much easier for us to travel around, there are not exactly too many hills to negotiate. It is a pity because having done much of our Christmas shopping on the internet, we were just beginning to receive the parcels.

I had some good news today. I have been keeping December as clear as possible to allow for radiotherapy treatment. I was beginning to dread the thought I might have to spur things on but I think there have been some actions on my behalf by Dr P at the Marsden and Dr M at Southampton. I had a telephone call today when the first appointment was made for next week when, presumably, the mask will be made. The actual treatments take place the following week. They would not normally have telephoned me direct so I have the bad weather and postal delays to thank for some direct action.

The time is just after four in the afternoon and the light is fading. I must telephone Jonathan to see if he has had any change of heart about camping in the West Country this weekend. I don’t think for a minute he would be deterred by the weather but cancelled trains might prevent him. There are just some activities which I just cannot appreciate on any level.

Carried by others

2010-12-02T03:54:00.000-08:00

I know I can’t change the ultimate outcome of this disease. Wherever possible we have tried to work with the medical staff and create a rapport with them and this has led to our having greater choices about treatment and deeper understanding of why particular actions have to be taken. I know - because I have been frequently told - that a great number of people have been praying for a cure. Strangely enough I tend to be more worried about how well I shall cope with the disease, particularly in the later stages. Will I have the courage?

This thought has been with me for some time but was particularly brought home to me by a very thoughtful card I received from our former vicar who has been going through great difficulties himself because of very serious illness. This is a time when we all question our own bravery, particularly during those long sleepless nights.

If this had happened to me years ago without all the events of last year, I would probably have handled it in a very private way. There have been several comments lately about how the British people had become more sentimental since the death of Princess Diana, and tended to be rather mawkish and over-emotional. Certainly, even if the idea of a blog had been available, I doubt whether I would have dreamt of being so open about the events of the past eighteen months. So why the change? Shouldn’t the middle classes set an example by not pouring out the innermost details of their lives? Have we all become part of the OK Magazine generation?

I recall March 2009: the chemotherapy regime was not really working and unless I became disease-free I knew I could not go for a bone marrow transplant which offered the only hope of a cure. In addition, they were having great difficulties in finding a near match as a bone marrow donor. It was at that point when I discovered I was donor conceived and the bottom fell out of my world. It has been very difficult coming to terms with this, readjusting relationships and ideas about family because where we come from does matter.

At the heart of it all was a secret from which I had been excluded. The previous generation have every right to be more private about their sexual lives but I did not feel I could be bound by their secrets or personal pride any longer where it affected me. I had to tell my immediate family because I was grieving and this helped enormously but no one I knew had a similar experience. Therefore, I decided I would write about it and my experiences with lymphoma. I gained strength from internet contacts with other donor conceived adults also suffering this loss of identity but, more importantly, I didn’t have to struggle on pretending that I was strong; I could admit vulnerability and because I trusted other people with my concerns, they in turn told me how they could now understand what I was going through so much better.

In the last month since we learned that the transplant had not worked, I have been amazed at the kindness of so many people in contacting me and their support is carrying me through. I may not have the courage I should have, but I am being held aloft by others.