Friday, 31 December 2010

Last day of the year

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

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

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

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

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

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

Wednesday, 29 December 2010

Thinking beyond myself

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

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

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

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

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

Tuesday, 28 December 2010

Christmas in the snow

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

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

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

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

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

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

Wednesday, 22 December 2010

Making connections

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

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

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

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

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

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

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

Tuesday, 21 December 2010

An old fashioned winter

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

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

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

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

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

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

Sunday, 19 December 2010

A festive weekend

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

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

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

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

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

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

Friday, 17 December 2010

With family and friends

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

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

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

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

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

Thursday, 16 December 2010

The run-up to Christmas

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

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

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

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

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

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

Wednesday, 15 December 2010

Early mornings

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

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

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

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

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

Tuesday, 14 December 2010

Witness statements

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

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

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

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

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

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

Monday, 13 December 2010

A restful weekend

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

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

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

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

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

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

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

Friday, 10 December 2010

Preparing to relax

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

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

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

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

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

Thursday, 9 December 2010

Conserving energy

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

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

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

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

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

Wednesday, 8 December 2010

Our faith in the law

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

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

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

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


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

Tuesday, 7 December 2010

A small victory

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

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

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

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

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

Monday, 6 December 2010

Testing the temperature

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

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

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

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

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

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

Sunday, 5 December 2010

Fog descends

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

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

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

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

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

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

Saturday, 4 December 2010

A family weekend

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

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

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

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

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

Friday, 3 December 2010

Crucial appointments

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

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

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

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

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

Thursday, 2 December 2010

Carried by others

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

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

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

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

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

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

Wednesday, 1 December 2010

Injection time

I think it must have been the stag which spent the night in the garden. By midday when it was snowing lightly but steadily, the doe and her fawn came into the garden. While the doe was busy eating the vegetation, the fawn was absolutely entranced by the snow. This is his first winter so he was racing up and down with excitement at this phenomenon. It was like a child who sees snow for the first time.

As Ray’s case comes together, he is asked to provide even more documentation. This time it was the cash book for this fiscal year. We don’t like providing originals to these professionals as we have lost a few documents in the past and the Inland Revenue expect us to have a complete record for the last 6 years, so I hope they can make do with photocopies.

I am beginning to feel the growth at the back of my throat; the other swelling is on the side. Most of my tablets are in capsule form or very small. However, there are two large tablets I take twice day and on three occasions now one has become stuck in my throat which causes me some stress. This morning I had to put them in water as I can’t afford to have that happen again.

We have left this month as free from appointments as we can to allow for being called to radiotherapy. However, I am now having to make appointments for flu vaccinations etc. When I look back at this blog at the same time last year I was stressed then about getting the radiotherapy underway. Since there is a major gap at the end of the year when nothing gets done, I can see this not happening until January which is very worrying.

Ray has been outside selecting small logs for the woodburner. I am going to have to remind him in a minute that he is going to have to give me an injection. I think we are both looking forward to that!

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.