Yesterday I went to see a man

Yesterday I went to see a man who has the power and influence to help me. I wrote him a letter before my appointment but he is a busy man and he didn’t bother to read it. So we played catch-up. I tried to tell him about my situation; he interrupted at every turn.

Yesterday I went to see a man who has the power and influence to help me. I tried to explain how, when suffering from a terminal illness, I was told at the point of trying to find a bone marrow transplant donor (my only chance of life), that I was a donor offspring. He laughed and said, “That must have been a surprise.”

Yesterday my daughter came with me to see a man who has the power and influence to help us as a family. She had to listen to stories about the mixed DNA of Britain, how studies have been done with men’s DNA and surnames, how black people have been part of British life for over 200 years and that a lot of Greeks have fair hair. Perhaps she will use this information when she prepares to give her lectures in genetics. It will certainly help me search for a transplant donor if mine isn’t able to donate.

Yesterday I went to see a man who has the power and influence to help donor offspring in this country. I learned that donor conception is no different from the situation of thousands of people who don’t know who their father is. I learned in that hour what all the other donor offspring already know about the prejudice they will encounter. It made me remember what it was like years ago to be a woman in a man’s world and to have to endure (politely of course) being patronised and used to provide a little mental stimulus.

Yesterday I went to see a man who has the power and influence to help me. Having endured chemotherapy for nine months with its attendant fatigue, I had to summon up every ounce of my depleted energy but I was prepared and polite with my daughter to support me. The man with the power and influence to help me has written two letters on my behalf to the GMC and Secretary of State for Health for which I am grateful, but I paid a heavy price.

Tomorrow – if I am still alive – someone will want my vote.

The true cost of living

I’ve just come back from seeing my GP in the vain hope there may be something on my file about my conception. They are going to look through the old paper records but think it more likely that if there is anything it will be on my mother’s records. This is unlikely since my conception was arranged privately and Reynold Boyd’s son, Nicholas Boyd, apparently put all the records in a skip. Probably sums up the practitioners’ attitude towards their end product!

I need to know whether there is any genetic information I can pass on to my children. For example after I had breast cancer my GP kindly spent time talking to my daughter about the likelihood of her contracting this disease. Unfortunately, of course, I had supplied my GP with totally incorrect family data so she based her conversation with my daughter on the fact that there was no other breast cancer in the family. My GP is going to research whether or not there was in fact a genetic factor so that my daughter, at least, will be better informed than I have been.

I have had medical personnel in the past saying how ‘unlucky’ I have been in not only having breast cancer but also mantle cell lymphoma. I am now wondering whether this is just bad luck. Mantle cell lymphoma is rare in men but even rarer in women. Is my bad luck due to environmental factors, my genetics or epigenetics?

I am a non-smoker with a healthy lifestyle. I am not overweight, I eat healthy food most of which I prepare myself and I go for a walk most days. Everyone has been surprised at these diagnoses. When I contracted cancer my mother said to me that I was the last person she would have thought would succumb to the disease and she had been a nurse of long standing. She also said something which I didn’t pick up on at the time, “It’s my fault.” Of course we reassured her then that she was blameless and even now I know about my conception I know that there can be no way she is to blame, but that was her instinctive reaction. The problem is did the practitioners really know enough about the background of the donor or the effects of donor conception on the offspring?

Have there been sufficient studies as to the medical outcomes for donor offspring and IVF offspring? The latter group are still quite young but there is some evidence to suggest a higher than average incidence of leukaemia. The problem about donor offspring isn’t just that there have not been any studies as far as I know, but the records have been destroyed and most donor offspring don’t know they were conceived in this way. I am at the age when medical problems are going to show but I am the tip of the iceberg. I know that lots of people desperately want to have children but does that mean we have a right to children and is it at any cost? What is the true cost to the children of their parents’ desire to reproduce? This is something we may all have to consider carefully.

Genetic disease and the right to know

There was an interesting article in The Times today and in the TimesOnline where the GMC proposes that doctors will be obliged to inform relatives about a risk to their health when a patient is found to have a genetic disease. However, it points out the disadvantage that adopted children will have.

“Despite calls from some campaigners for a change in the law, adopted children do not have a legal right to learn details of their biological relatives’ health records, even if such details are relevant to their own future health”. (TimesOnline 26.09.09) Not only adopted children are affected by this. Donor offspring conceived in the 20^th Century do have not recourse to 50% of their genetic records. There are far more of us than you imagine!

As someone who has suffered from cancer in the past, and now lymphoma, I would like access to these records. But they have not only been deliberately withheld from me and others like me, but in most cases deliberately destroyed. These records are not just relevant to me but to my offspring and future generations.

Not knowing about my conception has meant that unwittingly I have given false information to insurers and medical practitioners about my family history. As this article makes clear “Genetics is predicted to become an increasingly important branch of medicine as the underlying causes of more and more diseases are linked to an individual’s family history”.

Whilst secrecy in the past may have been used to cover up male infertility and male pride for God’s sake let’s think now about the offspring – not about their pride – but about their lives and the lives of future generations!

Being useful

This weekend Ray is running a photography course for people who would like to be professional photographers. I must admit from the outset that the photographs I use for the blog are mine and mine alone. He is really an exceptional photographer!

I enjoy meeting the people and it is nice to be busy and useful. Last month we had people flying in from Croatia and Austria as well as the UK. The timing of this course is fortunate as I have had the chemo just long enough ago to be feeling reasonable. The first day of the course takes place in our studio where they learn about portraiture but on the Saturday and Sunday they visit some of the beautiful locations we have nearby. Just a few yards up the road is a beautiful medieval church and in the village itself are the ruins of a Cistercian Abbey.

Although we are not far from a city we enjoy village life and although it is not a tiny remote hamlet, it is bounded on one side by the water and surrounded by woodland on the others. When I look out of the windows at the rear of our house all I see are trees and I love not being hemmed in. This is where the deer live on their progress through the woods round the village, just occasionally coming into our gardens if there are some good flowers to eat.

I find it difficult to look closely at the garden right now. I have usually taken care of it but I am not allowed to do anything at the moment. This is not just about low blood platelet count and the danger of cutting myself, but also there is a risk of infection with compost etc. It is very difficult for me not to see what needs to be done.

This is another aspect of cancer/lymphoma which is difficult to cope with – the passivity and having to ask other people, who perhaps are quite busy, to do things for you. I come back once again to this idea of being useful. Some people have gone on about the joys of retirement but when you ask them what they do all day it is sometimes just a round of TV and coffee mornings which would drive me round the bend. Fortunately, other people have got it right and they are doing all sorts of hobbies as well as activities where they help others – being useful.

One of the reasons for writing this blog is to share my experiences with other people so that if they are going through something similar themselves or caring for someone who is, they will realise they are not alone, that somehow this journey is shared. I need to feel that what I am doing now, however passive it seems to be, could be useful and I hope that this experience may be translated into a book or television programme so that it could be understood by a wider audience.

The autumn harvest

I have always loved autumn and as a family, when my son and daughter were younger, we loved going for walks in the woods and swishing through the leaves. I have a special affinity to the season I suppose because my birthday is in October. But there are two sides to autumn. On one hand there is the harvest of all the wonderful natural produce of fruits, vegetables and nuts – a glut of good things. There are the golden days with slight mists in the morning and the beauty of the berries and foliage all around us. The other aspect of autumn is the sense of loss as the winds pick up in October and the beautiful leaves begin to fall so that by the time winter is upon is the trees are bare.

In my own life at present I am trying to concentrate on what is good and colourful and this morning my mood was lifted by a lovely email from the school where I used to teach. If only more people knew the positive effect of their messages, but sometimes I must admit, the melancholy creeps in. There have been quite a few high profile deaths from cancer which have really given me a sense of my own mortality when I think what they have been through. I hate the phrase “he/she lost a long battle with cancer” and I hope it is never used about me. No one who has coped with the pain, discomfort and often indignity of the illness AND the treatment can be talked about as a loser. They have won the right to peace and freedom from pain.

Autumn is also a time of memories and nostalgia. There are so many evocative smells, the wet grass, the garden incinerators slowly burning leaves and the cooking smells of apples and berries. So many memories of earlier years and holidays flit into my mind and there are twinges of regret when I think about whether I really will get through this and experience these things again.

The most evocative picture of autumn, to my mind, is Keats’ poem with its wonderful appeals to the senses. The poem ends on a note of hope as Keats notes that autumn too has its songs and beauties which are comparable to spring, the season so beloved of poets generally. Keats himself knew he was dying of TB when he wrote the poem and yet he wrote so positively. He didn’t have the option of a transplant and was dying in his twenties. I think this is a real lesson for me to enjoy this beautiful season and not think about the winter.

A testing time

Normally Ray is accompanying me to hospital or wherever for some treatment but today it was my turn to go with him to a neuro-psychologist. We arrived at 10.00 a.m. and left at 5.45 p.m. so he could have tests to determine how much damage he sustained in the accident in 2006. He has to jump through all these hoops even though the driver was successfully prosecuted. Always there is another hurdle so that the company can avoid paying out. It would appear now we are looking at the end of 2010 so if we are not careful both of us are looking towards some mythical time in the future when all, hopefully, will be well.

Somehow, however difficult it can be, we have to concentrate on the present and our immediate goals. This means looking at what has been good in our lives and being as positive as we can.

It has been good to be strong enough to drive around and be independent during the last few days. One advantage this time around with my chemo has been keeping my hair. CHOP-R was soul destroying in that respect. Not only were the steroids worse but losing one’s hair is demoralising. In the end I had very wispy eyebrows and just a few very straight eyelashes. Being fair my eyebrows and lashes were never a strong feature so I suppose I was lucky.

This time around again my hairdresser trimmed my wig but fortunately I lost very little hair with the first round of five courses of chemo. After a break before the next lot of chemo with a different drug, the hair had grown back so I feel something of a fraud going around with a full head of hair.

Going to the hairdresser’s on Friday was a real tonic. This sounds very trivial but it is so good to be normal and to go into an environment where you can chat and have a laugh. I go to a hairdresser’s in Wickham, a lovely Hampshire village with a good traditional butcher, and speciality shops. I was also able to treat myself to a good lunch in the Baytree Arcade so I went home thoroughly spoiled. I hadn’t realised just how easy it is to get caught up in this round of treatments, nor how important normality really is.

Autumn is a good time to take stock and look back at the good things of summer before the days draw in and we are thinking about winter. I must try to be as healthy as possible if I am to withstand what is to come so I must prepare for Christmas however unseasonal that seems to be, so that I am not caught short if I begin to weaken physically towards December. In the old days people used the autumn to prepare for the cold days when food was less plentiful and so I must prepare for the time when I can’t get out and about. But I have so much enjoyed the freedom and independence of the last few days. I only wish I could bottle it up and preserve it.

Autumn days

I have thoroughly enjoyed my son’s visit whilst Ray has been in France. So good talking together, watching DVDs, going for a walk and cooking moules. He works very hard in London and I would like to think that coming down to Hampshire can provide a little tranquillity although it is not always the case.

The weather has been fine as if summer can’t let go but the feel of autumn is in the air and the time of transition from summer into winter later in the year. This is a time of transition for me too. By the middle of winter I could be inside the bubble.

Fortunately I have recovered now from the worst effects of chemo and can now think more positively. But this blog is about my journey into the bubble and how I am preparing for the transplant. Although I shall be in isolation then, I am not in isolation now and while I am grateful for the enormous help given to me by family and friends, they have their problems too.

Ray has been very concerned about the delays connected to the case he is bringing against Biffa. It would appear that so many innocent people whose lives have been badly affected by guilty drivers have great difficulty in obtaining justice. It seems to be all about wearing the plaintiffs down so they will accept anything. While he has this worry he also has to support me during this period.

We know we must both stay as positive as we can and enjoy the good days when they occur. It is very difficult to plan anything at the moment as I don’t know when my chemos will take place. I can’t see the transplant happening before mid January and we must just hope they can get me into remission by then.

This year has been one of tremendous ups and downs. The lows have been not finding a match, learning about my conception and the destruction of clinical records. The highs have been finding a donor and achieving some success with the chemo. Now I have to have the determination to see these next chemos through and not to allow any lows to affect my determination and chances of recovery. It is so easy to be adversely affected by events around one.

I know nothing really about what it will be like in the bubble and I hope I will be able to tell my story to help those others who are travelling a similar route and their families. I am sure there would be more donors if more people knew about what a transplant entails and how it can change lives. I just hope that some good can come out of what has happened to me this year. If there is one thing I have learned this year it is the importance of openness.