A difficult week

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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.

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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

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

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.

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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

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

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.