Journeys

This is an exciting time for so many people I know with trips and changes of direction. My son leaves Watchdog to start working on a new BBC programme and our daughter is off to Amsterdam. Friends have just returned from the Caribbean and others are just starting on holidays to faraway destinations. If we were just idling around wasting our time, I suppose I would be envious, but we have a different sort of journey to prepare for.

The wonderful thing is that all these people have taken time out to send me messages so I’ve had emails from Canada and India, phone calls and emails from France as well as postcards. Somehow knowing that life is going on for all of us and we can all keep in touch is very reassuring.

I’ve had a cold all week so I’ve had to keep away from crowded places to ensure it doesn’t turn into anything worse. I really don’t want this tight schedule to be derailed at the last minute. This means I haven’t been able to see my mother in the past few days and telephone messages just aren’t the same as I know she will be worrying. It doesn’t matter how old our offspring get, they are and always will be our children.

Raymond has been trying to keep me steady all day. It’s not that this operation tomorrow is major but it is all part of the process leading up to the transplant. We have had a good life together and hate to see it being threatened but there is no alternative. Whenever I start to feel sorry for myself I remember the cancer sufferers who have to endure so much pain and disfigurement. We have to view 2010 as a doorway through to something better. Maybe this time next year, we too will be planning a change of direction and looking through the travel brochures.

And for anyone reading this who is alone while undergoing treatment for cancer/lymphoma, there is a great brotherhood/sisterhood out there, so keep hoping!

History

This evening Ray comes back from France and seems to be pleased with what he has achieved concerning the boat. He normally spends some time keeping it in order. Usually we would have spent so many weeks there, visiting about six times a year and we have grown very fond of the area.

Before he went we were watching the news when we heard of the proposal to pay the Taleban not to attack. Immediately, I said “Dane geld”. Most people of my age were educated at a time when history was not taught as a serious of separate fun topics but a more continuous story so we know all about Ethelred the Unready’s fatuous attempt to placate the Danes by paying them to go away. Similarly one of the reasons for David Dimbleby’s new programme based on history is that he was bewailing the fact that many people have not been taught history well. Those who fail to understand the past are doomed to make the same mistakes.

One of the reasons why we like Normandy so much is not just about what it is like now, but its past and then not just its medieval Norman past but its role in World War II. They don’t seem to forget how they were liberated.

To make sense of the present we need to understand the past. I am finding that very difficult now. When I was a youngster I lived in a very modern house with painted walls and wooden floors whereas many of my relations lived in older more cluttered surroundings. They longed to rid themselves of swirly carpets and wallpaper whereas I was fascinated by antiques and relics of the past. Consequently, because I was interested, many of my paternal family’s artefacts such as china, pictures and linen came to me.

The books and pictures I still treasure but some of the china I only kept because it belonged to a great-grandmother whom I never met. Now I feel strangely ambivalent so I have put many of these items away and shall let my son and daughter decide later on what they would like to keep.

Nature versus nurture will always be a talking point. When I started teaching it was all about nurture but now because of the study of genetics, we are perhaps achieving a more balanced view. Just as we need to know the history of our country and changes in society, so we need to know about our own history and what has made us what we are. It really is a human need.

On the cusp

Today was much milder on our morning walk. Yesterday was quite frosty so few people were about and we saw a rabbit and two muntjac deer. Usually we just see the signs of where they have been but obviously with no one about, they were making the most of their freedom. In the garden I can see the bulbs beginning to emerge. Sadly I think I shall miss the early spring flowers so I shall need to see some photographs of the garden.

I also feel just on the cusp of things about to happen. On Tuesday I saw my ENT consultant to confirm everything is all right for my operation on Monday in Winchester. Although I haven’t heard yet from the Marsden whether my donor is all right with an early March date for the actual transplant, I must now assume that I need to be ready for 22^nd February as my admission date.

Ray is making a quick dash to France today with another engineer who is going to to measure up the boat’s fuel tanks to ensure the old ones can be taken out and the new ones put in. It is going to be something of an engineering feat. More than that, they need to communicate their wishes to the French boat repairers near the marina. Unfortunately, neither party speaks French and even if I had been there, the specialist engineering vocabulary is a little beyond me.

Just after Ray comes back Anna flies off to Amsterdam for a few days. I am glad she is having a break with people her own age as she has been working hard and the next few weeks – months even – are going to put quite a strain on family life and free time.

I am now beginning to feel quite nervous. I know there are lots of practical things I should be doing in preparation but I almost feel paralysed. I have spent a lot of time wanting some action from the medical personnel but now I am being looked after by the Marsden my role has changed. In many ways I can step back and react rather than having to drive this whole procedure.

Letting go

When I have the transplant my DNA and blood group will change. What is fascinating is that sometimes for a period of time a recipient can have more than one DNA. But I must admit I am a little loath to let go of my DNA because it holds so many unanswered questions.

Many people when they reach a certain age, and particularly when they have children, are fascinated about their family history – not just dates and family trees – but more the genetic traits they have inherited and which will be passed on down through future generations. It is that aspect which has interested me. Naturally we look at our children and try to see family resemblances. Since I never met Raymond’s father and have only seen one photograph of him as he died many years ago, I have assumed that any physical, emotional, mental traits which I could not attribute to family members I knew, must relate either to him or my paternal grandmother who died before I was born.

When you discover that you are only related to half of the family you thought you knew, you lose an enormous part of your cultural heritage. It doesn’t matter how close you are to your maternal family, they are only half of the equation. A multitude of questions arise, not least about the risk of genetic disease or the prevalence of certain conditions.

Some male donor conceived adults can at least trace their paternal ethnicity because they have both x and y chromosomes but females are less lucky. Perhaps they will be able to do that at some time in the future. There are one or two television programmes in the pipeline which will assist the young donor conceived to trace their parentage following changes in the law. This will be particularly ironic for those thousands and thousands who will not be able to do this.

In the meantime, I must let go of my old DNA and my blood group and take on a new persona – thanks to a wonderful donor. I am grateful to the medical profession for attempting this procedure which could cure me. I do, however, hope other medical professionals will take more care in the future about how they approach infertility. Too often this has meant that in solving the parents’ problem they may well be storing up many problems for the child who is created. It is not enough to be wanted; one has to belong.

Writing at night

Once again I can’t sleep so I get up and write. Long before I became ill, if I had an important letter to write, rather than worry about it or keep going over the same problem, I would get up, sort out the line of argument, write it, then go back to sleep.

I have been concerned about my mother. As a former nurse she has some idea of what I am facing although she doesn’t really know much about bone marrow transplants which, for her, are relatively new. As she has a poor memory now, she prefaces many questions with, “I know you’ve probably told me this before but….” and I try to reassure her about my treatment. One aspect she never forgets is her gratitude to the donor. I just hope that the delays and poor communication at Southampton haven’t scuppered my chances since there is only one good match worldwide.

However, she does have very real anxiety about not being able to see me for so long once treatment has started. Naturally, I am doing my best about the practical aspects of not seeing her in organising her finances but we have always been close. I have noticed that most of my female cousins also get on very well with their mothers. It’s not a dependency (although my mother at 96 is more dependent upon me now) and she has never tried to interfere in my life, it is more that we enjoy each other’s company and find it stimulating.

As a child my mother took me for walks in the countryside, teaching me the names of plants, birds and trees. She interested me in literature and because of her own interest in social history and strong sense of fairness in terms of class and sex, I learnt much which has been invaluable. Most Scots have a respect for education and she was no exception.

She told me not only about her family and but also about my father’s. Later I assumed this was because it is very often women who are the repository of the family genealogy on both sides. Now I wonder whether she was trying to reinforce the bond between my father’s family and me. Certainly my father didn’t really talk much about his family or their history. He tended to talk to me about art, poetry, ethics and religion. He would take time to go through my singing parts and broadened my interest in music but now I think about it, he avoided talking about his parents. Perhaps there was a part of him which subconsciously did not want to maintain a fiction of a genetic link. Perhaps an intellectual link was something which could be trusted.

He had a moral courage and steadfastness of ethics which must have made the deception very difficult. I have sometimes felt he would be disappointed that although I am anti-war, my stance is not as a conscientious objector but more that I have a practical dislike of being used for other people’s political and material ends. I don’t have the Puritan ethics of simplicity and self-denial. I rejoice in the complexity of art, literature and music and I have a more practical less religious attitude to morality. In some ways knowing there was no genetic link has given me the permission to be different.

A world beyond

Only one scheduled hospital visit this week before it all kicks off next week. It has been strange being at home with the ability to make choices about where I go instead of it all being organised for me. I think I’d better make the most of it while I can.

I’m certainly glad the weather is milder. The birds did find it difficult during the very cold spell and we feed them every day. We have two feeders near our woodpile and some of the larger birds are quite messy and scatter some of the seed they don’t care for onto the ground. Then we found that was disappearing too. Before long we glimpsed a very shy field mouse which would pop out furtively and quickly from the woodpile. In the end we discovered there were two and no doubt there is now a whole family of them. So we may have to move the bird feeders in case they have some bigger brothers.

When the snow was on the ground it really revealed to us how many creatures actually use or inhabit our garden. Our rear garden descends into a little of our own woodland which backs on to common woodland so we have lots of woodland birds. We also have muntjac deer which live in the woods but regularly come into our garden and make themselves at home. Similarly we have foxes. Last spring it was delightful seeing the young cubs playing on the lawn, usually in the evening but we often see both foxes and deer during the day.

I suppose if we had a beautifully tended rear garden we would resent their visits as deer adore eating all sorts of colourful flowers especially roses, but we long ago decided we preferred to watch the animals so there are no specimen plants or well weeded borders, just lawns, shrubs and trees and very contented wildlife.

We have noted over the years, that when we have been unwell and at home, that is when we seem to receive more visits from the deer and/or foxes. It could be that when we are less busy we take more time looking out of the window, but certainly it makes us feel part of a much bigger world beyond. As I prepare to step out of the very active world where in the past I have had some control over my life, it is good to see a parallel world out there of which we are all part.

Running out of puff

Yesterday and today I have been incredibly tired. The emotional turmoil and uncertainty of the last few weeks have taken their toll. I feel much better having told my oncologist about the Royal Marsden as I don’t like to be secretive. Now I must look to getting everything in order to make life as easy as possible for the family. At least I did the dentist/optician visits when I thought I was going into hospital before.

Ray is running a course this weekend so I am involved in the background and yesterday I sorted out lots of admin. that I had been putting off. I think with all the travel and extra bits and pieces you need for going into hospital isolation, that it is all going to be quite expensive.

Anna has been going up to Stafford University to examine some skeletons in order to write a forensic report. Travelling up there and back hasn’t always proved very easy, especially when it was snowing so her friend loaded them in the car and they were brought back yesterday. She is going to get a collapsible table so that she can work on them here so her flat will resemble a laboratory at times but it will save some journeys. Perhaps if she leaves them out without putting them away at night, it will deter burglars.

Jonathan dropped in last night, having travelled down by train from London. He looked like mountain man and I don’t remember ever seeing anyone with such a large backpack. He was waiting for his friend to drive up from Exeter then they were going camping. Yes, I repeat camping – in all that rain. I’m not really surprised, from the time they were born, we would take them out walking rain or shine and we did a lot of camping on the continent as we could go so much further and stay so much longer. However, that was in summer, not January. I think the plan is to do some fishing and certainly today has brought some milder weather. Perhaps we can look forward to trout tomorrow.

Jonathan and his friend set off at about 10.00 p.m. and I was, at last, able to go to bed, campers and skeletons notwithstanding.

A whiff of mortality

The last three days have been very busy and as usual have revolved around hospital visits. Monday saw the last of radiotherapy at the General Hospital and I have to say that despite all the delays whether from scheduling or machine breakdowns, the radiotherapy staff have always been polite, good-natured and hard-working. Tuesday brought a visit to the Marsden – very busy but very purposeful. On Wednesday I went to a private hospital in Winchester for pre-assessment tests prior to my ENT operation. These were extremely thorough. In the afternoon came a visit I dreaded – seeing my oncologist and telling him that I was going to the Marsden. I hoped he would not think it any criticism of him as he has been excellent.

As usual he saw us on time and was very affable. When I told him about the Marsden he was a little concerned about how we would get there but I told him about Jonathan living reasonably close by. Of course, he wanted to know why not Southampton. He could see I didn’t want to be too critical but encouraged me to talk about it. I don’t think I am the first person who has experienced similar difficulties. At all events he wished us well and I knew he meant it. There are a number of people, to whom I shall pay tribute later, without whom I could not be contemplating the course of action I am taking and he is one of them.

Both Ray and I have times when it all becomes horribly serious i.e. the steps we are about to take. We cannot help worrying about it. Ray naturally wants to know at what point we can stop being really worried. I suppose the acute stage lasts for about a year but I think the graft versus host disease can become chronic at any point and the lymphoma could come back. After about twelve months I imagine the worry is about the same as any cancer survivor who knows that the cancer can return. It is something we must learn to live with but for most people of our age, life is not stress-free and if we can use this to make the most of the time we have together then whether it turns out to be short or long it will be good.

Today brought a phone call from the Sister on the Transplant Ward at the Marsden. She has arranged for me to go there for a PET scan on 10^th February, the insertion of the Hickman line on 11^th and a check on the line on 12^th February. They don’t hang around! She is now checking dates with the donor but tentatively I could be in hospital by 23^rd February. For so long now I have wanted some certainty but that brings with it a strong whiff of mortality.

A balance of risks

I couldn’t sleep before our trip to the Marsden. At last something is happening. It was foggy once more in the night and I could hear the different notes of the fog horns but somehow they didn’t sound so malignant or mournful. In the morning as we drove along the M27 the sun was already shining. By the time we were driving along the A3 it clouded over again and we could see a few mounds of greying snow still left over.

It was a good meeting at the Marsden. Of course I’d read the book provided about transplants and seen the hospital DVD and I do know they must tell you the worst so I was prepared. The statistics are a little frightening. At my age the mortality rate from the transplant is 1 in 3 and if you survive there is a 50% chance of a cure. That sounds pretty terrible but the other statistic is much worse; with mantle cell lymphoma and having undergone 3 courses of chemotherapy, I have one to one and a half years left. No contest: a risk, yes, but so much of life is a risk and the alternative is just sitting around passively waiting for death. No, if I am going I shall go out having fought for survival.

On the plus side, I am a non-smoker and apparently my biological age is younger than my chronological age which reduces the risk slightly. On the plus side, this is the best hospital for cancer and related diseases in the UK. On the plus side, the place is bustling and the team are friendly, switched-on and efficient.

I learned a little about my donor. There is a 9 out of 10 antigen match which is good but there will inevitably be some graft versus host disease. The US are far ahead of us with cord blood transplants, the use of which largely eliminates the rejection by the host body of the transplant but in the UK we must rely on donor bone marrow transplants at the moment. My donor is a 39 year old female from Germany. To that wonderful, generous woman, my gratitude knows no bounds. There was another donor from Germany and one from Holland but they were not so good a match, 8 out of 10 antigens which is much riskier.

As I don’t have a choice of donors lined up, the hospital wants to go ahead with the transplant as soon as possible. Obviously I shall have to have time to recover from my ENT surgery but they are looking to do the appropriate tests on heart, lung, kidney function and liver, the insertion of a Hickman line and a PET scan to determine the effectiveness of the radiotherapy in mid February. The Hickman line means that blood tests and drugs can be administered through that instead of through my poor arm where, after months of chemotherapy, the veins have collapsed. All being well, this means I should go into hospital at the end of February for the high dose chemotherapy and be ready for the transplanted cells in early March. At last a tentative, but possible time-table is emerging.

Light dawns

I don’t sleep very well at the moment. Too much is still undecided and whenever I did wake last night the fog horns were sounding. It is quite a strange, mournful sound although when you live near a port you know how important it is for the ships at sea.

Some guidance through all the fog of my own life would be very welcome. I seem to have lived with so many uncertainties for so long and these were compounded last year with discoveries about my own origins which only gave rise to even more uncertainty. The problem with cancers is that you cannot predict the outcome of any treatment or the time it will take. For those of us used to having some control over our lives, this is a very difficult lesson to learn.

I am convinced that this week will give me some answers about my further treatment and when it will take place.

*********

I started writing this early this morning. Then I had a phone call from BUPA, my health insurer. They have agreed to fund my bone marrow transplant at the Royal Marsden. Now I have a real chance of survival.

I’ve had to be very careful about what I have written in an open forum about where I would like this to take place and why. Logistically it will be more difficult for visitors but there is more chance they will actually have someone to visit.

Tomorrow we go to the Royal Marsden to discuss the treatment. As soon as I get a date, I shall have formal approval and we can start to plan.

Thank God

A good weekend

The weekend and no trips to the hospital. I didn’t realise how depressed I was becoming until we had a break. This weekend was particularly good as Jonathan was able to come down on a visit. We didn’t really know whether he’d be able to make it as he might have been filming a story for BBC's Watchdog. Maybe it was the visit, maybe it was that an end is in sight for the radiotherapy, but I had more energy this weekend. A good job really as Jonathan is really fond of home-cooked food.

Actually he is a very good cook himself and whenever we visit him in London, he takes a lot of trouble over cooking for us. Also he has suggested that he cooks a number of dishes for Raymond which we can freeze when I am in hospital. It’s not that Raymond can’t cook but he is going to be doing a lot of travelling and this will make it easier for him. There is also something very psychologically good about having a meal specially cooked for you. When I am I hospital the danger will be that the focus of attention will be on me and no one will understand how difficult it is going to be for Raymond.

I genuinely feel that the week ahead will be a turning point as far as knowing about my treatment. If this is the case, then we shall be able to plan much more effectively. It has been so difficult constantly telling people that my hospitalisation has been deferred yet again.

My mother told me quite firmly that I must not risk visiting her when there are germs about. She is quite obviously worried about what is to come. As she has some problems with her short-term memory she asks me to go over what the schedule is going to be. It is going to be hard for her when I can’t visit. She is such a determined lady that I hope I have inherited some of this quality to see me through

Tomorrow is my last day of radiotherapy. Some people have it for considerably longer than I have and many come over from the Channel Islands; that must be so difficult. Actually up to a few years ago they used to stay in Netley Castle while they were having their radiotherapy and our choir used to visit them at Christmas for carols in the Great Hall. I remember vividly robing in the Billiard Room with winds and sea-spray lashing against the windows.

Now things may wake up

At last it’s thawing. In the city there is very little snow although there is still plenty here in the village. Now things will wake up and the hibernation will be over.

I’m not very good at waiting as this blog shows. Everything seems to be happening so slowly whereas I can’t wait to get going. In some cases the slow progress is just because of administrative delays but mostly it has to do with the course of the disease.

January is a strange month. The aftermath of Christmas can involve torpor and certainly that is the case when one is snowed in, but it is also a time of new beginnings, resolutions and regeneration of energy. In my case the spirit is willing but the flesh is definitely weak after 13 months of treatments.

When I thought I was going to have the transplant last December, I psyched myself up to do lots of preparatory tasks but it is difficult now to energise myself to carry out the necessary work. I keep thinking that something will happen to postpone the transplant yet again.

Ray must feel this about his case. We are always crossing one more hurdle, another medical assessment or financial analysis, only to find another series of hurdles ahead. Possibly it will all come together by the end of the year, but I think the other side will constantly want additional reports and I know many cases where they play this game to the utmost hoping the plaintiff will die, give up or go bankrupt.

However, it is the turn of the year. Even last year was not all bad although it came close to the worst on my record.

More snow in the night

More snow in the night, just when I thought we might escape in the South. It’s still not as bad as most areas and we can get around although anyone using public transport such as rail, has difficulty.

I shall miss going for walks until after the thaw. Yesterday was just a little too icy for our liking and it would be dreadful to risk a broken limb at this stage. I feel a little in limbo at the moment regarding my treatment. I have only 4 more visits to radiotherapy which pleases me. The radiotherapists themselves are very hard-working and seem to waste no time but the delays are horrific. Whether the machines are not good enough, nor serviced regularly enough or whether the schedules are unrealistic, I’m not sure. The times for appointments are so precise e.g. 3.12 but I have only ever had my treatment once on time. In addition, the car parking is very, very time-consuming and I have to leave Ray to park the car while I go into the hospital to register my arrival.

Some of these hospitals have just grown too big. I realise economically there is a case for centralisation, particularly as much of the equipment is very expensive, but they have lost the human scale. It must be very difficult to assess how many people are really needed, especially in administration. There are really good people working there but I think it must be very difficult for them to cope with the systems as they exist at the moment.

We were so late yesterday, that I had to abandon any idea of going for my swine flu vaccination. The surgery were very good and offered me a later appointment but we were still at the hospital. As they are doing these vaccinations on set days, I think it might be wiser to go without as I shall be approaching my ENT operation soon and I’m not sure that it would be wise to be under the weather. Fortunately, swine flu has not been as virulent as first thought

As I write this, it is snowing very lightly so my daughter will have problems travelling by rail today. She has an archaeology course starting this evening and we just hope students won’t be deterred from attending so that the class will run. She is working hard to build up her teaching and needs a few more break-throughs.

I hope we get there

The threat of further snow hasn’t materialised despite leaden skies. Had the usual wait at the hospital again. The radiotherapists are nice people but they are battling against the odds. I did have one victory though, that BUPA will pay for my ENT operation which has now been arranged for very early on 1^st February. I then had to write to the Bone Marrow Consultant to remind her that although at our last meeting the transplant was scheduled for the end of this month, it would have to be delayed because of my sinus operation. I haven’t heard a squeak from her since our last meeting in November but, of course, the bone marrow donor will need to be informed of the delay. As the post has been dire or non-existent recently, Ray delivered my letter by hand.

Talking of bones, Anna’s summer school course this year at Oxford University is called Grave Concerns. More and more people are interested now in Forensic Archaeology so I hope it is a great success. She is just beginning to publicise it now. In the meantime she is running classes in Southampton and in the Continuing Education Department at Reading University.

It seems strange with the snow still on the ground to be talking about and looking forward to summer. However, if I am shortly to be shut away for the transplant, I ought to be planning ahead. Unfortunately, I did that before and it came to nothing. Once I have BUPA approval I shall be able to be more positive about it all.

We are also trying to plan some positive things. Last year was pretty grim – although no year is ever without its compensations in terms of events and people we meet. Since we know there are so many challenges ahead we want to draw up a wish-list of places to visit. In the first few months this is going to be tricky because I won’t be able to mix with many people but Anna knows I have wanted to visit York for ages and she is already looking into how we can visit the city and see some of the countryside.

Raymond is thinking further ahead and further afield. I shall not be able to go abroad for over a year but we are going to sit down and plan some journeys – preferably by sea and train. There are so many wonderful places I have yet to see; I hope we get there.

Picking up the threads

Much of my blog is concerned with my slow journey towards having a bone marrow transplant. At each stage just when I think I am making progress there is another hurdle to overcome. Another part of my blog reflects my concerns about my own origins, having discovered a few months ago that I was donor-conceived.

I haven’t spoken of this to very many people but usually I am met with incomprehension and platitudes. This is where the article in the Daily Telegraph really helped as it enabled some people to read the background to the story and take time to form an opinion in the light of my dilemma.

I had thought that it would be young people who would think that infertility was no big secret and that it is sensible to carry out procedures to improve the situation. Many older people still have this sense that this is an area which shouldn’t be discussed – but not all and I have been pleasantly surprised.

Usually people are not really able to help me in my search but just recently a friend has been putting her logical mind to the problem. During her working life she was involved with areas of investigation and she has made some good suggestions. It may be that nothing will come of this, but to have some help in my search really lifts my spirits because it means that some people do understand that it is not a rejection of my parents whom I loved and who loved me, but part of the very real human need to know about one’s origins.

I have enjoyed not going to the hospital for two days. The week ahead brings 5 more treatments, then next week I am due to go to the Royal Marsden. At long last some things have been finalised such as my ENT operation. I have found it difficult to cope with everything being in the air.

It was good to start the week with a walk. The woods were eerily quiet and the paths rather slippery. Dark clouds overhead threaten more snow but it is holding off and business seems to be returning to normal.

Waiting

Radiotherapy dominates our lives at the moment. If we take the average journey of an hour to the hospital and an hour home (more in wet weather) plus one to two hours waiting, it is difficult to do much else. Waiting for treatment is par for the course: sometimes a machine is broken, treatment needs to be verified or the power is off. At least the icy weather has one advantage for us in that it has lessened the traffic on the roads. All of a sudden the much-maligned 4 x 4 is valued once again. Our Jeep certainly enables us to get through the icier by-roads.

In other respects the country really is at a standstill. Obviously people have been told to limit their journeys and schools often have to close because the heating is poor and also because teachers often live miles away from where they teach, unlike years ago. Many can’t get from the minor roads to the main roads to travel to work.

We haven’t had any post for days yet when we talk to people in Yorkshire, the postmen are getting through. Businesses must be hampered by this. Nice to see neighbours helping out more especially the elderly who are housebound. I can’t help contrasting all this with the winter of 1962/3 which was very harsh in the South of England where we had snow from December to March.

Hopefully, either the weather will improve or businesses will decide that the snow cannot just be used as an excuse for lack of action. I really desperately need to know about my ENT operation authorisation but more particularly whether BUPA will agree to my transplant at the Royal Marsden. Time is moving on and it is so difficult to plan.

Meanwhile we have enjoyed seeing the deer in our garden at midday and fox tracks everywhere. It has been so good to be able to walk in the snowy countryside too. The snow has brought in a flock of redshanks and in our garden the birds are gathering round the feeders which have to be replenished about two or three times a day. Seeing so much wildlife keeps me calm when so much is undecided in our lives. Hopefully this week will bring some progress.

Walking

I am so glad we have gone back to our early morning walks after the Christmas recess. They are particularly beautiful in the snow. However, I am also glad that I bought a particular kind of wellington boots with a heavy tread and leather lining to keep me warm and prevent slipping. They are expensive in Britain but much cheaper in France where we keep our boat. We had gone out for dinner one evening and there was time to spare before our reservation so I walked around a shoe shop – and there they were. I have never regretted buying them.

We first took our boat to France out of economy. The mooring fee for boats in this area of Southern England is about £7000 per annum – a thorough waste of money even if you were wealthy. Since we don’t need the auxiliary facilities as we live locally, it was a complete waste of money. So we combined our love of Northern France which we were visiting regularly anyway, with finding a more economic place for our boat. The town is proud of its marina and there are very friendly relations between the townsfolk and the users of the marina.

The marina itself is at the head of a canal which in turn links to the river. If you go by car from the town to the estuary you pass through farmland and hamlets which take you back 50 years. It is shooting and hunting country and wonderful birds such as eagle owls, buzzards and storks can be seen. Then the countryside merges with the marshland. We love to go walking on the estuary – in our boots of course. At low tide the French cocklers are abundant and there are also duck ponds and hides as duck shooting is a common pastime. The vistas are breathtaking and the beauty of it is that it is not at all fashionable as there is no night life to speak of.

I haven’t been able to go to France for some months because of my illness and I really do miss it. The people are so friendly and there is a camaraderie amongst the boat owners on the pontoon. I have enjoyed going there even when I have been ill as on board the boat I can rest and read in complete tranquillity.

Meanwhile I have my French boots and I use them to make the most of our countryside which looks so beautiful at the moment.

Delays and decisions

I’m half way through radiotherapy. When I was a child, radiotherapy used to be feared and dreaded. It caused depression and had quite horrible side-effects. Perhaps there is a sting in the tail or it may depend on the area of the body receiving the treatment, but so far, compared to chemotherapy, it is a piece of cake, except that it is monumentally inconvenient. In the grand scheme of things, compared to the pain and suffering of many cancers, inconvenience is pretty minor.

In fact the day started so well. During the festivities we had not had the time, energy or inclination to do our usual early morning walks, but Britain’s normal life has resumed this week and so we got up reasonably early and dressed very warmly. Actually it was wonderful to be out in the fresh, if cold, air. We soon warmed up and compared to how I was just a couple of months ago when climbing the two hills, I was pleasantly surprised at how much stronger I felt.

The day went downhill from there. I thought I’d better deal with phone calls now normal office life has come out of hibernation and had a frustrating call to the Inland Revenue – enough said. Soon it was time to set off for the hospital. Having left an hour before my appointment as the traffic is usually hideous, we were pleasantly surprised to arrive 30 minutes early but disappointed to learn they were running 20 minutes late.

Some 45 minutes after my appointment time, a radiographer announced that one of the machines had broken. We actually waited nearly two hours in total. We couldn’t leave the area to get a drink as we had no idea when I would be called. By then the League of Friends café and the commercial café were closed anyway. It was freezing as there was a ceiling vent blowing out cold air from which none of us could escape no matter how we moved seats.

Owing to the delays, we couldn’t drive home before my 6.15 p.m. appointment at the Nuffield Hospital so we had to drive straight there and wait. However, at least it was warm, comfortable and there were hot drinks available. Now I have seen the ENT consultant I have a much better idea when the transplant will take place. I have learned that unless the sinusitis is really eradicated, the high dose chemotherapy which precedes the transplant would lower my immunity so that the sinusitis would very likely flare up and this could be lethal. The cure necessitates an operation. I really don’t have a choice.

After the holidays

Almost every day we visit the hospital for my radiotherapy. We plough through the traffic which is heavy at the moment and almost every day it is raining and the roads around the hospital are grid-locked. By the time we emerge, it is dark and approaching rush hour. However, each day is a day nearer getting me fit enough for the transplant. Whether I like it or not this must be endured and it is for a good purpose but I am exhausted.

I thought the article in the Daily Telegraph would be a one-day wonder but I have had some interesting telephone calls. Obviously, like most donor-conceived adults, I would like to see a change in the law regarding donor anonymity which was one of the main reasons for consenting. I did have other reasons. Mostly when I have actually told people about the discovery of my donor conception, I have met a wall of clichés because no one really knows how to react. It is not something within their experience.

Ray has found it much easier to direct people to the article (even though it is rather over-dramatic) rather than explain the difficulties we have encountered during the last year. Usually we have found that after reading the article, the responses are more considered. It isn’t that people mean to be unkind, they just haven’t thought it through so the story has in that respect been helpful. I still find it astonishing to think of my parents and lots of other parents living with a secret like that; it must have been so difficult and so unnecessary. Thank goodness we live in a more open world nowadays.

Tomorrow I visit the ENT consultant who should be able to give me an idea when I am likely to be fit enough for a transplant. Southampton are still going with a date at the end of January and ignoring the ENT problems. At all events I should be in the bubble by March. There were times when I never thought I’d get there, especially last April when the first lot of chemo didn’t appear to be working and I didn’t seem likely to get a donor anyway. I am on tenterhooks at the moment awaiting an answer from BUPA about whether they will fund the transplant. The problem is that all offices and institutions seem to stop working for about a fortnight over the Christmas period and it’s difficult to get them moving again. On Monday most people will be back to work and hopefully things will be moving.