Tuesday, 30 November 2010

It's snowing

Last night was apparently even colder than before over most of the country. Anna is surrounded by snow and with what must be exaggeration, the locals are talking about nights of -20C to come. We had a very light dusting of snow in the back garden which had thawed by 10.00 a.m. A deer spent last night on the lawn; I’m not sure why as I would have thought it would be colder out in the open and they have no predators in the woods as far as I know.

The Marsden was very busy yesterday and it was difficult to park as they are building on what used to be the staff car parks so Raymond waited a long time to find a slot for the car. I had my blood taken and saw Dr P. in a freezing office – much colder than the rest of the hospital. My cyclosporin levels were low so he will ring me to tell me by how much to increase my dose to counter the effects of GVHD. He was also shocked that my radiotherapy hadn’t started as the growth which is apparent in my neck has grown. He plans to contact Dr M to see if he can speed things up. I had pentamidine and knew from previous experiences that this can mean not eating until 3.00 p.m. Luckily the hospital trolley came round for patients and I could have a sandwich and drink.

Bob seems much more cheerful and is improving all the time. Maybe they were just wondering whether his disease had come back. I don’t like to ask. But he was much more aware and outgoing.

We had a long wait for pharmacy and one of the items was a pack of syringes and Raymond has to inject me every other day. After the pharmacy we went back to the ward where one of the nurses showed him what to do. The purpose is to improve my white cell count to ward off infection.

At long last, after a tiring day it was time for the drive home – just as everyone else had finished work. Of course, it is dark now, and what with the lights and traffic density it was a more difficult journey than usual. We were like zombies when we finally arrived home.

Dr P. rang me this morning and was his usual cheery self. It is very snowy in Sutton so I am glad we missed that experience. He told me the strength of the tablets I need to take each day and we hope for a decrease in disagreeable symptoms.

After a rather airy dismissal of snow I have returned to my blog having seen there are more than a few stray flakes coming down. Although the flakes are quite fine, it is snowing steadily and settling in some places already. I was going out to the bank today but I think I shall postpone that until tomorrow.

Monday, 29 November 2010

Off to the Marsden

It is early on Monday morning and we are off to the hospital today in Sutton. So far the weather is cold but no sign of snow although sometimes even going from here to Winchester in winter means a change of weather. I am feeling better today but didn’t think I’d feel like doing a blog of today’s visit when I come home. Although yesterday afternoon and evening were not good times for me, the morning was.

It was good to be able to go back to sing in the church choir although the choir is extremely small at the moment compared to former times. I wasn’t sure what sound would come out of my mouth especially as both the lymphoma growths are in my throat and at the base of my tongue. The sound was all right but I could tell I was rusty. The problem is I associate singing with being happy so I have hardly been practising over the last year.

It was both lovely and tricky: lovely that so many people were glad to see me and wanted to give me a hug, and tricky because I have to avoid hugs and hand shakes at the moment. I have no idea when this radiotherapy will start – or even which year! Hence I feel I should make the most of my time before my throat becomes too sore, or my larynx is damaged.

I really considered what I would wear very carefully –no not in terms of fashion or colour co-ordination, but how many layers I could wear under my cassock. It was really good despite the cold but I had to get up very early to make it happen.

The weather outside was bitterly cold and there are few birds around. However, we are keeping their feeders full. Raymond chopped some more logs into appropriate sizes for the wood-burner.

In the past couple of days we have sat down together and ordered our Christmas presents for the family. When the children were very small I could not drag them around town with me, so I did a lot of mail-order purchasing for stocking fillers etc. Now with universal wish lists on Amazon, it is all much easier for items you don’t need to see or handle. This means that my forays into the crowded shops will be fewer which is good

Anna is travelling from Marlborough to North Wales by train and telephoned me. I hadn’t wanted to tell her about her rabbit being poorly until we had sorted him out. She was passing through areas where it was snowing; I don’t know which part of the journey she was on. Let’s all hope it is neither a repeat of last year, nor (and this really must be whispered) a repeat of 1962/3. In the south of England the snow lasted so long in frozen masses by the roadside, it went black.

Sunday, 28 November 2010

A step too far

When we learned that the lymphoma had returned, the Marsden started to reduce the immuno-supressant drugs. The logic behind this is to give the graft a chance to fight against the lymphoma. Personally I think that this is a bit late. I am on two sorts of immuno-supressant drugs and over the past month I have gradually been asked to reduce one of these. Recently I came down to zero for the Mycophenolate. I think that was a step too far.

In the past week I have had a bad rash all over the front of my torso and an uncomfortably dry mouth. Today I was very sick and have been vomiting. Unfortunately, I no longer have any anti-sickness tablets in the house but we are going to the Marsden tomorrow. It makes me remember what I was like for several weeks after I came home after the transplant; Ray would cook a lovely meal and I wouldn’t be able to eat it.

I still tend to have quite small meals which means I have to eat between meals since I become a little hungry. When an in-patient at the Marsden I was weighed every day and I have carried on doing this. I know that it is wise for me to stay just above 8 stone as if I lose weight, I lose strength.

I had the blood count sheets from my GP surgery. They are not that good and the white cell counts are low. I know that they probably would not give chemo (if that is what I had been prescribed) with those counts but I am not sure about radiotherapy. Perhaps if I go back on to a low dose of Mycophenolate, that will be sufficient to keep the worse effects of Graft versus Host Disease at bay.

Ray had to take Anna’s rabbit to the vet’s on Friday. He had a small sore on his back and the vet gave him a thorough checkover. Apparently this condition is fairly common in rabbits and he was given some ointment, had his nails clipped and he is due back in a fortnight.

Let’s hope we are all in better health soon.

Friday, 26 November 2010

Keeping cosy

Raymond is going to bring in some of the seasoned logs. Yesterday we had a wonderful fire all day and evening but today it is playing hard to get so it looks like there is a mixture of unseasoned logs there. When I hear my cousin talking about a Canadian winter I feel very spoilt but I think they are geared up to the cold weather far more than we are.

I noticed that when I went shopping yesterday I was looking for warming foods, even desserts. I am not really a fan of sticky toffee pudding but I paused beside the range of suet puddings, really tempted in a way I haven’t been for years.

I haven’t heard back from my local doctor regarding my blood tests. I think now that as I have gradually withdrawn some of the immuno-suppressants, this is probably a return of GVHD. It is both sore and itchy, not a great combination. As I am going to the Marsden on Monday, at least I can find out then.

Today is bright and sunny but without a hint of warmth. The Arctic cold hits you even when you open the front door a fraction. Although I would love to be more active, even my brain is numbed by the cold outside. I have to say that with the central heating on, a log fire lit in the sitting room and the AGA pumping out heat, we do not live in a cold house; it is just me.

A doe was on the bottom lawn this morning. She and all the other deer which visit us, seem in really good health judging by their coats. A rim of sunlight illuminated her outline and since there are no dogs any longer next door, perhaps we shall see the deer more often even in winter.

We are not running a course this month. Although we had a bit more interest in the past few days, it is too late now to put one on and I think people are deterred by the weather in case they can’t get home.

We couldn’t help wondering how older people manage in the cold, particularly if their homes are not well insulated. Many of them have only one source of heating whereas we can pick and choose. I am going downstairs to sit in an armchair chair by the woodburner with the quilt Josie made me over my knees. Today I feel like a very old lady.

Thursday, 25 November 2010

Keeping warm

A deer spent the night sleeping on our lawn despite the cold. Ray saw him just before we went to bed and again in the early morning. By the time I was up he was gone but all the rest of the lawn was covered in frost except for where he was lying.

I’m finding the cold quite difficult as, because of the transplant, I feel the cold more acutely anyway. The difficulty is that most of my winter clothes are wool and I have some lovely cashmere jumpers but I can’t wear them next to my skin. Even if I wear a shirt underneath, after a while I feel the prickle of wool.

I went out to do some shopping this morning; the shops are becoming very busy as everyone prepares for Christmas. When I came back wisps of smoke were curling from the chimney as Ray had lit a welcoming fire. It’s not the first we have had this season, but it is the first during the day. However, because it was warm my trousers became unbearable to wear as my skin was itching so much. Instead I found a really long skirt in a cotton knit fabric like jersey and this is both warm and less itchy.

It is unusual in recent years to have such a cold spell in November and the shops, after last winter (which was snowy even in the south), are full of fur-fabric hats, aviator helmets and the sort of fur-lined boots which a few years ago were the preserve of pensioners.

While I was having an after-lunch cup of coffee, Anna telephoned us to tell us about her appraisal in her new post. I think she acquitted herself well not only about the work she is currently doing but about what else she could bring to the department and possible departmental outreach to schools and other universities. She has already sown the seeds that she would like to stay beyond the end of her contract.

We are glad she is happy and although she is working long hours, that is inevitable when you first start teaching or lecturing. I think she is making her mark and certainly gets on well with the students; I do feel her previous work with sixth form students and adults was good preparation.

Wednesday, 24 November 2010

It's growing colder

On Tuesday night I slept well. This is so rare it has to be commented upon and marvelled at. In addition, I took my time getting up as we had no appointments planned which is unusual. Looking out of the window I could see two deer munching away at the remaining apples. Although we see them every day in summer, their appearances are rarer in autumn and winter and we could see that their coats had changed to a darker brown and they merged into the colour of the woods very effectively. Of course they are still around but daylight hours are shorter.

Ray’s solicitor had implied that his case might be settled this year. However when we went over to sign the completed witness statements, we were told by his secretary that it could go on into next year. This is something which I have thought possible for some time, but Raymond always latches on to the good news and he has been very disappointed by this. He would really like this to be over and done with.

I went to the doctor’s yesterday about a weird rash which has appeared on my torso; it could be anything – even chicken pox. I hadn’t really wanted to go to the crowded surgery in case I was infectious or other people were as my blood count is low at the moment. However, the earliest appointment was Saturday morning so I had to remind them I am a post-transplant patient. The doctor didn’t seem sure what it was but arranged for me to have a blood test this morning at 8.10 a.m.

I am not usually around at that time because, since I sleep so poorly during the main part of the night, I tend to catch my sleep in the early morning. In addition, by the time I have had a bath and applied all the creams for the GVHD, the early part of the morning has gone. I noticed how cold it was as I left home and remembered how I used to get up at 6.00 a.m. and leave home at 7.20 a.m. during my working career. I am glad I don’t have to do that now.

It looks as if it will grow colder as the week progresses and as the weather forecast indicates snow in Scotland and the North East, I think we must be threatened with the winds from Siberia.

Tuesday, 23 November 2010

Being an impatient patient

We do not like going to Southampton General Hospital. First there is the mammoth task of finding a parking place, then we walk past people in dressing gowns looking like zombies, having a gasper outside the hospital entrance. Today we arrived promptly at the reception desk for our 11.30 a.m. appointment with the radiology consultant.

The waiting room has been redesigned with colourful seats and nearly enough room to pass someone without hitting one’s legs on the coffee tables. At midday one woman was called to see the consultant and we found that she had waited one and a half hours. How can you get one and a half hours behind schedule if you have started at 9.00 a.m?

I asked at the reception desk how far behind they were as there had been no communication, and whether we could go for some lunch if they were really one and a half hours behind. The receptionist said they were only an hour behind time but she would find a nurse.

Miraculously, we were told we were next to be called and I was duly measured and weighed but this was a false dawn. We were deposited in the doctor’s room and told he would be there soon. I think we were shunted into the naughty patients area so we couldn’t corrupt the patient patients. So after another three quarters of an hour I asked where the doctor was because otherwise we would like to go for some lunch. Then he arrived.

On a personal basis Dr B is a pleasant man and very knowledgeable but the department is run in a totally haphazard way. Why use nurses as clerks? Why did they walk up and down so much? Has no one analysed the tasks they are doing and whether the layout and location of files, materials, patients are in the right place?

The upshot is I shall have less intense radiotherapy than before. Although I was horrified at the histology report about my throat which indicated very rapid growth of lymphoma, even I can see that it is not growing at the rate of 70%. Both Dr M and the radiology consultant have explained that growth of cells in a laboratory is often different from those actually in a patient. Although I want to get rid of the growth I know I am not in immediate danger from it and if two cycles of radiotherapy will be enough so that my other glands are not permanently damaged, then I shall welcome that.

Monday, 22 November 2010

On the spur of the moment

Naturally it is wise to plan ahead and think about the future. In my case we must change our way of thinking and act more on the spur of the moment. I leave my diary purposely blank to fill in the various medical appointments. I have to fit in with when the professionals are available and/or when changes occur to my body which need immediate attention.

When Jonathan was visiting us a fortnight ago he put forward a possible plan for the four of us to go to France. He particularly wants to get to know Carentan which he has visited twice with us and he knows how relaxing we find Normandy. However, for various reasons we couldn’t actually find out if this was a real possibility until the middle of last week.

Fortunately, the ferries were right so that Jonathan and Josie could come down from London after work to catch the overnight ferry with us and we could also catch a ferry on Sunday afternoon to enable them to return to home that night. Peter and Sarah were happy to let us have the gite so we seized the moment and went.

When we arrived early on Saturday morning Sarah had already set the table for our breakfast and there were croissants, jam and good bread. We packed a lot into the day with a visit to St Vaast where the market was on, shopping in Gosselin’s wonderful food emporium and lunch at Fuchsias. We had taken Jonathan to Fuchsias a few years ago but he was unable to have a meal there as he had eaten something earlier in the day elsewhere (mussels or oysters) which made him ill. So at long last there he was in Fuchsias ready for a lunching experience which in fact lasted two and a half hours. We took pictures of the various courses and this made me laugh as Jonathan always used to record the various meals we ate on our camping trips throughout Europe years ago.

The following day we drove down to the estuary. The weather changed and was wet and windy after a dry day on Saturday. However, it added atmosphere to the wonderful landscape. The tide was further in than I have ever seen it, so he will just have to come back again to see the estuary sands and wonderful marine life. We drove around Carentan so he could see the changes that had been made after which we had lunch followed by a leisurely drive to Ouistreham where we boarded the ferry home.

Today I went to the hospital to see the doctor in charge of radiotherapy but that, as they say, is another story.

Thursday, 18 November 2010

A bad hair month

No, the title of this blog does not refer to my lovely husband. We received this photo this morning via email from good friends in Australia.

After quite a long chat to Anna on the telephone, I am still trying to visualise her carrying a 6 foot silver Christmas tree out to a taxi, fitting it in and then taking it upstairs to her flat! Our discussion mainly centred on Christmas. I tried to get on with my Christmas shopping this morning and I’ve already bought quite a few items for my mother to give as presents as she can’t get out and about. However, I must admit it is good when I can do it on line.

I am trying to solve a problem which to any male readers will seem trivial Рmy hair. When I had my first lot of chemo, CHOP-R, it all fell out but grew back well, i.e. almost as thickly as before, in a good shape and vitally important, the right colour. Doctors are very blas̩ about the effects of hair loss. It mostly does grow back but often the growth is patchy or the hair is a different colour and sometimes curly. One of the transplant patients at the Marsden on Monday showed us her hair which had changed from dark black to grey.

None of the chemos in 2009 made me lose all my hair although the treatments affected its thickness. However, the high dose chemo in February had a profound effect. It has grown back much more slowly, it is thin and the wrong colour. When I developed Graft versus Host Disease I lost my eyebrows and the hair round my hairline, back and front. The latter is growing back very slowly so I am still wearing a hat or indoors a hair band.

The thinner hair means I really do need a hat and I can understand the women in times gone by, when the heating of homes was poor, wore lace caps and other headgear. The colour of my new hair is too dark and I don’t look like me at all. I am glad to have my eyebrows return. They are sparse but it is great to have them as I look less deathlike.

I know some people will think I should just be grateful I am here and should not worry about my altered appearance but appearance boosts morale, so next week I think I shall go out and see if I can find a really good wig. If I am to fight this fight I really need to feel as good as possible.

Wednesday, 17 November 2010

Better indoors than out

We had another hospital visit today but this time it was for Raymond and not for me. The Defence in his motoring case have asked him to see a specialist (now already done) and to have an x-ray and MRI scan. So it was off to the Nuffield Hospital once again. It was a typical November morning with periodic periods of rain and cold winds. I don’t think I would have ventured outside today if I didn’t have to.

Fortunately now we have come home, we don’t have to go out for anything else and I can catch up on paperwork and filing. The post had already arrived and I have an appointment on Monday with the doctor in charge of radiology at Southampton General. However, like last time I had radiotherapy, it could take two to three weeks before treatment commences.

We are just about to have a late lunch. Having medical appointments spread over lunchtime is always difficult especially with the journeys to and from hospital but it was nice for me to be able to support Raymond for a change. The rain looks as if it has set in for the rest of the day and the sky looks dismal. There is not much wildlife moving in the garden at the moment either. All the birds seem to have satiated their appetites for the day and are now sheltering and keeping warm.

It is good to see that Raymond is so thrilled with his Blackberry. I truly think we may have a convert to modern technology. He is now reading his own emails. He keeps asking me how it all works which question, of course, I can’t answer. I only know how I have valued all the traditional and electronic means of keeping in touch in the last few months especially.

Tuesday, 16 November 2010

Routine visit to the Marsden

Yesterday’s drive to the Marsden was initially almost problem free with the traffic being free flowing. Although we have had high winds lately which have removed the leaves from the tops of the taller trees, there were colourful displays lower down and where the trees had not suffered from the wind either because they were shorter or were thickly planted. The sun of the South coast gave way to mist hanging over the fields in North Hampshire where we could see heavy frosts. Just before the junction with the M25 we encountered problems. There had been an accident in the early morning fog but fortunately although the traffic was slow moving, the problems did not last long for us.

We were happy to meet Bob and Julia who, not living far from the Marsden, had already seen the consultant. I had a nurse new to the clinic who had two attempts at trying to extract my blood. The second nurse who took over managed to get blood from my arm as I hate having to resort to my hand because it is so painful. Dr P was happy that Dr M had reacted so quickly and concurred with the decision to use radiotherapy, although he was not surprised that I had not heard from them as I think he considers that they are not always the best part of the oncology service to patients.

From a telephone call today, I understand my file has only just gone down to the Radiotherapy Department as one of the consultants has been away and only now is someone else going to handle the backlog of patients. I have approached BUPA about the theoretical possibility of private treatment if the delays persist.

We managed to leave the hospital earlier than usual so we were home by 4.00 p.m. Raymond was tired not only from the journey but because he has been suffering from a cold on the chest so we were glad that we had a casserole already made which could be heated up in the AGA. After rain in the early evening, by bedtime this had stopped to be replaced by fog. Living near the sea I have never been annoyed at these sounds. They make me glad to be safely indoors rather than on the high seas.

Today we have done more work on Raymond’s witness statement for his motoring case. The paperwork involved in this is immense and I still don’t believe it will be resolved this year as all the deadlines imposed by the judge have not been met. On a happier note, we are seeing Jonathan and Josie this weekend which is something really to look forward to.

Monday, 15 November 2010

Sunday afternoon

Normally I am fairly upbeat about my visits to the Marsden. I have to go through all my drugs the day before and decide which prescriptions I shall need. As we have to leave at about 9.00 – 9.30 a.m. it is always an early rise for me as I take some time to bathe and deal with my skin (much improved I might add). It has been good to compare notes with other transplant patients and glean information. The staff too have been cheery and pleased with my progress.

However, since realising that the lymphoma has returned, these visits are going to be more difficult and they will probably become more infrequent as my care has been transferred back to my Southampton oncologist. So I must psyche myself up for the visit to the Marsden tomorrow. Nothing has changed in that the hospital and staff are still excellent, it is just that the gamble hasn’t paid off.

It is a good job we can’t successfully foretell the future. Life would be impossible and perhaps we would not take risks unless they were cast iron certainties. However, although the transplant hasn’t cured me, I am glad I went through with it. I learned a lot about myself, my family and friends. In the last few days I have had emails, two lovely cards and an encouraging message on my blog. I am grateful for the support which is a real lift, much more than I can possibly explain. It is like the outside world piercing through showing us we are not alone.

Raymond recently had some painful dental treatment but was quick to add that it was nothing like the pain I have gone through. I said that it was not a contest and that gradually I have learnt to cope with all sorts of pain and discomfort which I couldn’t have coped with before. It also makes me realise that just because I have lymphoma, I don’t have the monopoly on pain and discomfort and that is salutary.

I am just off to bring my mother over for the afternoon. We will really enjoy her company as she has a great sense of humour.

Sunday, 14 November 2010

The mystery of the missing trout

It was good to have a phone call from Anna yesterday and to be thinking about Christmas. She is trying to plan ahead about food and I know it is all about making it easier for me. As she hasn’t done it before and I have been doing it for years, I must remember that while she is excited about doing it, there is also a little anxiety. We all want Christmas to be relaxing so I don’t worry at all if the food is different from what we usually have, although I have made a Christmas cake and mince pies and this pleases her.

We are at the centre of a mystery and surprisingly it focuses on a harmless trout. Lots of people know Ray goes fishing and when talking to our postman, Malcolm, Ray promised him a trout. Accordingly, a trout was taken out of our freezer on Monday just before Malcolm made his postal delivery. It was wrapped in cling film and foil, placed in the centre of an oval meat platter on top of the logs stacked in the front porch.

When Malcolm came he told Ray that he would return for the fish in 15 to 20 minutes after his postal round was complete. Meanwhile Ray and I went off to the Nuffield Hospital. On our return we saw the empty plate and thought he had collected it.

Imagine my surprise on the following day when Malcolm said to me that the fish had disappeared when he returned. We all found it impossible to believe an animal could have reached up that high, grasped the fish (still frozen) and pulled it down without breaking the plate. In addition, there were no signs of any animal tracks in the porch. On the other hand, if our thief were human he must have been a very opportunistic one. There was only a twenty minute slot while the fish was there before Malcolm returned and you can’t see the porch from the road.

Yesterday we saw remains of the silver foil in the back garden which makes us think again of a very daring and lucky fox. How he got through the cling film is another matter.

Friday, 12 November 2010

Grey rainclouds

We didn’t have any major plans for today but there were a number of niggling little errands and tasks to carry out. The Jeep is so heavy on petrol that we have to plan our journeys carefully. Being able to go out together made it much more interesting, especially as the weather has gone on being miserable. Although we have had some high winds over the past few days in the south, we have suffered much less than other parts of the country and nothing major has happened to the trees in our garden.

We are both finding it difficult to handle our emotions at the moment especially as having been told the mantle cell lymphoma has returned, nothing is actually happening in terms of treatment. Although we try to be cheerful we are both somewhat down. We shall go to the Royal Marsden as planned on Monday. However, I am now waiting for the Radiotherapy Department to contact me. This is probably an NHS referral and could take weeks. I do need to have some idea when I shall see the doctor in charge, the type of radiotherapy to be given, the date when it will start and the duration.

There is nothing we can really do to speed things up which makes us feel rather ineffectual. We are neither of us sleeping very well and as I don’t nap during the day I tire easily. I think this will worsen once treatment starts.

It is difficult to know what to say when people ask me how I am. I am not life-threatened at the moment but I know any treatment I am given will at best reduce the swellings. I have become used to feeling as I do, so I no longer consider myself as unwell as I might have done at the start of my encounter with lymphoma.

I hope tomorrow will be brighter and sunnier. I am sure that the shorter days with their dark evenings and the grey rainclouds are depressing all of us. What we need is a bright sunny day to rid us of our self-pity and energise us.

Thursday, 11 November 2010

Armistice Day 2010

After some bad weather yesterday dawned sunny and not too windy. It was a little cold and since the transplant and whenever I have chemo, I feel the cold. Fortunately, those close to me know this and are prepared to swelter a little.

We drove down to Worthing and it was relatively traffic-free. The countryside showed all its glowing colours in the sun and our journey was quite quick. We went to a restaurant/hotel called the Sussex Pad with my aunt and cousin, after which we went to their house and chatted. The hours just flew by and it was just so relaxing.

Today has been altogether different. It has been wet and windy most of the day. We had a letter from Dr. P which went directly to my GP but is copied to me. It is quite discouraging seeing my prognosis in black and white and Raymond was quite disconcerted. Even though we know what has been said by the medical staff to us, somehow when it is in black and white it seems so definite.

However, at the moment nobody really knows what will happen in the long run. We are pretty sure that the radiotherapy will work but we have no idea when the lymphoma will grow back or at what rate. We don’t even know where it will grow back.

There is a balance to be achieved between putting one’s head in the sand and refusing to look at the probable outcome, and the other extreme of passive acceptance. Sometimes when I am asked what I would like for Christmas I can’t see the point of asking for anything since I don’t know how long I shall be here, but that is completely to ignore the love and goodwill of those around me who still want me to have pleasure and be comfortable whatever happens. So I shall not be the spectre at the feast and will help to plan as always.

Today is Armistice Day which is never cheery. It is a time for reflection and, unfortunately, lots of chichés. It is so sad that our politicians are still trying to solve our problems by going to war. Knowing how sweet life is and how much I want to keep living, I can’t help sympathising with those who have died as a result of war and feeling sorry for their loved ones.

Tuesday, 9 November 2010

Planning treatment

The CT scan yesterday dominated the day as usual but the Nuffield staff are very kind and helpful which made a difference as I had to have the cannula is the back of my hand which was quite painful as the veins are thin there. The scan meant I couldn’t eat or drink (except water) for some hours.

Anything Dr M arranges is quick so I was not surprised to learn that the scan results would be taken to the team meeting of the oncologists today. Dr M rang me this morning and discussed the recommended treatment. Apparently the lump in my groin is due to Graft Versus Host Disease and the Mantle Cell Lymphoma can only be seen in my throat so I shall have two sessions of radiotherapy plus a consultation with the doctor in charge of the department and marking up. This is where I want to put my foot down. I had no idea that before radiotherapy they tattoo you to make sure they line you up correctly on the table. It is in the form of a few dots. That may not seem terrible but think about it – is it necessary for something so permanent?

With luck I should be contacted soon by the radiotherapy department and I can begin to know when I need to go to hospital. It would be nice to be able to do other things apart from hospital visits.

I didn’t sleep last night until after 4.00 a.m. The hours do go slowly and it means that when I do sleep I awake late at 8.30 or later. The trees are even more bare and some of the local roads have been flooded. It was good to have a visit from Margaret this morning who tells me what is going on in the village. She always manages to make me laugh.

This afternoon I have been sorting through family photographs to take to my cousin tomorrow. She is going to scan them for me and it means she has a copy for her archives and I can ensure that Jonathan and Anna have one each. I think they are both too busy at the moment starting and developing their careers to have much interest in pictures of people they haven’t met, but in years to come, particularly if they have children, they will want to be able to trace family similarities.

We are looking forward to tomorrow whatever the weather is like as we are paying a visit to my aunt and cousin. Fortunately, they get on very well with Raymond and it is always a happy occasion.

Monday, 8 November 2010

Autumn winds

I have just returned from the Nuffield Hospital where I had a CT scan. The day seems to have revolved around this, partly because I could not eat or drink (except water) for three hours, and partly because Southampton seemed to be gridlocked as far as traffic was concerned because three cruise liners were in port.

My oncologist will know the results of this scan tomorrow. He and his colleagues will decide on the best course of treatment. At the moment it is difficult to make any plans because I could be having daily radiotherapy or three weekly chemotherapy.

Jonathan was here at the weekend and Josie joined him on Saturday evening. He is very keen on camping, particularly in the wild and in all weathers. Accordingly we took him to an excellent camping and outdoor pursuits shop situated locally. Then we went on for a pub lunch in Wickham at a lovely old pub. Wickam is a favourite venue for us as I used to take the children there when they were little. There are a number of specialist shops and we would always end up in a heavily beamed tea room for toasted tea cakes.

We went to a specialist butcher where Jonathan chose some meat as he had decided he would cook for us that evening. After a little look around the Square he ended up having a nostalgic toasted tea cake in that same tea room.

Yesterday we went for a walk in the woods behind our house in the morning. The trees were a picture and there was a carpet of golden leaves. The walk was made more magical as it had rained earlier and the sun made everything sparkle. In the night there were high winds so we were glad we had taken the walk when we did as the trees were much barer this morning.

Just when I feel my world is narrowing to a round of hospital appointments, something unexpected happens, perhaps a visitor, a phone call from someone I haven’t spoken to for some time or an unexpected email. The contact gives me a real lift.

Friday, 5 November 2010

Encouraging words

When your youngsters have flown the nest there is nothing nicer than when one of them returns. Today I happily prepared the room for Jonathan and I hope Josie will join him tomorrow. It is so good to have good things to focus on and anticipate.

When I was younger and the post was more reliable I used to write quite long letters to keep in touch with people. The phone is instant and allows us to hear the other person’s voice but the conversation is ephemeral whereas the written word can be read and re-read. Although, as I wrote yesterday, emails can be brief and businesslike, many are longer and resemble the letters we used to write, with the added advantage that they are instant. And yet there are still times when you want to see and feel the actual handwriting of someone you know/love. There is something very special nowadays about a handwritten letter.

Today I’ve had two encouraging emails, a card and a telephone call from friends and relatives. On an otherwise very dull November day, they are clear chinks of light.

My oncologist has arranged a CT scan at the Nuffield Hospital on Monday afternoon. He will compare this with the one I had about four weeks ago before my throat biopsy operation. He cannot confirm yet whether I shall be starting chemotherapy or radiotherapy as he is awaiting the results of the needle biopsy of my groin. However, I do feel action is being taken on my behalf and the support network is palpable.

I did some food shopping this morning but by one o’clock I was extremely tired. With Jonathan coming I had in the morning planned to do some cooking later on in the day. However, my brain still thinks my body can manage what it always used to. It is not like growing old which is gradual and I am finding it difficult to adjust to my new frailty.

However, I must not talk myself into feeling more unfit than I really am. Bob, a fellow transplant patient, said he no longer remembered what it was like to be normal and I am the same. Our thresholds of what we can tolerate change. So although I am tired I am comparatively well and this is important at the beginning of a new regime of treatment.

Thursday, 4 November 2010

My journey beyond the bubble

Those readers who have been with me as I journeyed towards the bubble know that I hoped the transplant would cure my lymphoma. Unfortunately, the answer to prayer isn’t always the answer we wanted or anticipated just as a traveller on a journey doesn’t always arrive or the destination changes. This is how I feel. I have known for a long time that I can’t plan my life to the nth degree. However, I have never been expected to shoulder more than I can bear. Hearing Dr. M’s voice on Tuesday afternoon and knowing he would be taking over was a real boost. If you have to make the journey I am now undertaking what better medical guide could you have?

This morning we made our third set of amendments to our witness statements for Ray’s case. It is very time-consuming and stressful. So after it was done we went into Southampton and had lunch. Ray has just arranged for a new Blackberry like mine and I hope it will make him realise just how useful email can be. Certainly over the past two years I have used it more and more. The communication can be instant or it can replace the long letters which people used to write and receive. It is good to be able to keep in touch and learn news outside my own sphere which is probably going to become more limited.

By 3.00 p.m. we were both really tired. It wasn’t that we had done very much but we were worn out and glad to reach home. I think the last two months have been emotionally very draining but we were uplifted and sustained by the vestiges of hope. Now it is gone, we are exhausted. We have to adjust to new goals since we can no longer hope for a cure. We must try to give the treatment the best chance to work. Optimism at the moment is difficult but neither of us is by nature miserable. Ray was low this morning and I had to lift him but at other times he is cheering me up, planning outings or doing things to please me.

Wednesday, 3 November 2010

Do not go gentle

I’ve had two months thinking time and I am determined that however difficult the treatment is and however uncertain the outcomes, I must try to face this with good grace. I am very much aware of Dylan Thomas’s exhortation:

Do not go gentle into that good night

Rage, rage against the dying of the light

So there is no danger of my giving in passively waiting to die. However, one can’t fight alone. This is where I have been so touched by the words of support and kind actions from so many people. They probably have no idea just how much this helps us as a family.

The other thing which has also pleased both of us is the real kindness and concern of the medical personnel who have looked after us. After a day of very real numbness yesterday, I received a telephone call from my Southampton oncologist, Dr. M. He had regularly been sent letters from the Marsden keeping him abreast with my progress and when he learnt that there was suspicion that the mantle cell lymphoma had returned, he said he felt like phoning me but thought it might be unprofessional. However Dr. P from the Marsden telephoned him because at our meeting we had opted to go back under his care at Southampton General. Dr M and Dr P seem to have hit it off and my oncologist is impressed with the way the Marsden have communicated so there he was on the phone speaking at 100 miles per hour as usual.

He asked me if I was still with BUPA as there are several drugs not available on the NHS. He was the one who advised us that whatever we gave up, and living with cancer is very expensive, it should not be our medical insurance. He rattled off three drugs which he could use and arranged to see me today as he is anxious, as ever, to start with the treatment as soon as possible. I was overwhelmed. Of course he says every time that there is no cure, but he is so positive about finding a drug which will reduce the lymphoma that his confidence is infectious.

Straightaway I contacted BUPA for authorisation and they reminded me that if I should need chemotherapy, I would be able to have it at home. It is such a change from insurers who try to use the small print to prevent you from having what is rightfully yours.

So this is a fight but I hate it when people talk about someone losing the battle against cancer. Cancer may overwhelm us but anyone who has tried to live life whilst engaged in that battle cannot really be called a loser when fighting against such incredible odds. To talk about losing not only diminishes the sufferer but all those medical personnel who have done their best with current knowledge, and all those wonderful supporters with their words of sympathy, their thoughts and their prayers.

Tuesday, 2 November 2010

The results

Ever since the PET scan on 6th September, we have been going through the various scenarios in our minds. When we visited the consultant at the Royal Marsden yesterday he confirmed that the mantle cell lymphoma had returned and it was not curable. We had known all along that the only cure was a transplant and we knew it was a gamble. Despite my having very high dose chemotherapy for nine days before the transplant, and the scan and bone marrow exhibiting no signs of the disease, minute remains of it must have been still lurking.

After a transplant the first few weeks are spent trying to accustom the host body to the new bone marrow and DNA so that anti-rejection drugs are used. Although this was only for about 8 weeks this was just long enough for the lymphoma to sneak in without fear of rejection so that by the time the drugs were reduced or stopped, it was there.

The only thing that can be done now is to have some treatment to reduce the effects of the lymphoma so initially radiotherapy will be used to ease my throat and ensure I can swallow and breathe. Then chemotherapy will be given to reduce the rest of the growths, hopefully. But there is no guarantee any of this will work. Although my new bone marrow means that we can use chemo treatments which have been used before (not usually possible) the disease has built up resistance. The most powerful chemo I had before was CHOP-R in that it really affected me physically and mentally. However, I don’t think it was much more effective than Bendmustine which I can tolerate more easily.

I have made it clear that I am prepared to fight the disease and to have further treatment, but I do not want to end up in intensive care with tubes sticking out of me. After the treatments to reduce the lymphoma have been exhausted we are then on to palliative care. I think it will be more convenient to have the radiotherapy in Southampton as it means visiting the hospital every day for 3 to 4 weeks. In addition, if I have the chemo in Southampton, after the first treatment the rest can be given at home if BUPA agrees.

This is the key. Whatever happens over the next few weeks/months I should like some input into my treatment and I want to be at home as much as possible and not go into hospital as an in-patient. Raymond and I don’t want this to be a miserable time for us. There will be times of sadness inevitably but we hope that we can build up some experiences together which will give us both pleasure, and provide him with some happy memories of this period, not just memories of time spent waiting in a queue for treatment at the hospital.