Tuesday, 29 September 2009

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.

Monday, 28 September 2009

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.

Saturday, 26 September 2009

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 20th 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!

Friday, 25 September 2009

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.

Wednesday, 23 September 2009

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.

Monday, 21 September 2009

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.

Sunday, 20 September 2009

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.

Friday, 18 September 2009

Early Autumn

Autumn is really in the air now. The children are now all settled into school for the new academic year and holiday-makers have returned to work. Yesterday in the village there was a smell of burning leaves and a hint of coolness despite the sun. In just one week the rowan trees have been losing their leaves and it is good to welcome the new season and all it brings.

I have been talking to my BUPA nurse about how I am feeling and he says that in his experience it is not the nausea or the other side effects of chemo which are the most devastating, but the fatigue. It is a tiredness like no other, which neither sleep nor caffeine seems to relieve. I was a little tentative about saying what its effects have been on me but he said it can be very demoralising and I had to admit that it made me feel so useless. When I think of my mother working until the age of 75 then doing a voluntary shift in a charity shop until she was in her eighties I feel somewhat purposeless at times. The tiredness can really sap your will and determination to recover but I suppose after nearly ten months of chemo it is not surprising.

In my case it has not been only my illness which has sapped my strength but my husband’s ongoing case against the Biffa company whose lorry ploughed into the line of stationery traffic which included Ray. It has been a very long haul and it will take some time before he has any semblance of justice, during which the lawyers, accountants, doctors and insurers will all be well paid. He has had to cope with all of this as well as my illness and he is my real rock.

In addition, for me there has been the turmoil of learning about my conception and that the father I had known was not really my father at all. I had hoped that the grief that it caused me would ease but there are too many questions which I realise now will never be answered. Despite myself, I find I am going over the past and re-evaluating everything. The security of my childhood was something which stood me in such good stead but now I feel it was based on a lie however well intentioned. I know there will be many people who will say you should be grateful to have had the love and kindness shown to you, and they are right and there are lots of people who do not know their family background. The difference is that mine has been deliberately withheld with the blessing of the law and I hope that somehow the law can be changed so that other people will not have to suffer like I have and others like me.

The good thing is that I do not have to bear difficulties alone. In the wider world there is a lot of support from fellow lymphoma sufferers and although I know most people don't understand the problems I have with discovering my donor assisted conception, there are a group of people like me who do and it has shown me that my reactions are not weird or ungrateful. And then, of course, there is the family and although we're not perfect at least there are no skeletons in the cupboard.

My son is coming home tomorrow for a brief visit. It will give me such real joy. He will lift my spirits and we will have a laugh. So much for autumn melancholy.

Tuesday, 15 September 2009

The mist lifts a little

Today I am feeling physically so much better. I coped with the morning walk well and tackled both hills which means I have been more energised.

Mentally I am still feeling rather lethargic so I must look out for more objectives to achieve. As far as my own treatment is concerned, I am hoping that the oncology team at my hospital will approach BUPA who pay for some of my clinical care but need to get updated to recognise the hospital as a centre for bone marrow transplants. I wrote to my consultant suggesting this course of action as if BUPA pay for my transplant there should be about £38,000 extra money which could go towards cancer care for other people. Yesterday I was feeling very purposeless, so if this goes ahead I will feel that I have started off something worthwhile.

As far as my mood is concerned, I think that lymphoma can be a lonely place at times even when you are surrounded by friends and family. During and just after chemo I have less contact with people than usual and more time to think about things – not always a great idea. Autumn is a season which seems to conjure up so many fleeting memories. Unfortunately, quite a few of my close friends and family are away right now and I realise how much I depend on them to lift my mood. However, this is where the internet is marvellous and just a timely email can make a world of difference. In the lymphoma chatroom reading about someone else just about to enter the bubble made me understand that there are quite a few of us out there and I must concentrate on what I can do rather than what I can’t.

Learning about the death of Patrick Swayze makes me realise how much I hate the phrase “he lost a long battle with cancer”. It is not about losing and somehow it demeans the person who has suffered the illness. We all must die at some point but the way we live our lives coping as well as we can with illness or disease does not always mean we are losing a battle.

Well that’s about as depressing as I’m going to be today. My daughter comes back tomorrow and Amazon have delivered books to read. Nothing ever goes completely to plan and who knows what tomorrow may bring.

Monday, 14 September 2009

Mists and melancholia

After my walk this morning with Ray I am feeling very shaky. It usually takes a few days to recover from chemo and this is my tenth this year. The nausea I can deal with but the effects of the steroids are quite dramatic. In the first instance they cause sleeplessness but after coming off them there is a tiredness which sleep cannot assuage. There is a lethargy and feeling of depression. It’s not even self-pity – that’s easily dealt with by looking at the news bulletins and realising how much other people are going through. It is more like old-fashioned melancholia, almost a feeling of detachment.

The time of year doesn’t help. It’s not quite autumn here in the South East of England as it has been fine and dry. There is a distinctive smell in the mornings when autumn truly arrives and that hasn’t happened yet. However, September is the new school year and not only am I not taking part in this as a teacher, I have this last week had to ask for a suspension from my PhD studies. This leaves me feeling a little purposeless.

It has been a strange year and a period of reassessment. I am extremely lucky in having a good husband and a great son and daughter but it has been difficult learning about my conception. This time last year I was putting the finishing touches to a book I had produced for Jonathan and Anna about my maternal and paternal family – not family trees but photographs, background information and anecdotes to bring their forebears to life. I knew that by the time they have children I might not be here and I wanted to make sure they had some family history – the family trees I thought they could do themselves at a later date if they wished. It all seems a little ironic now.

My concept of family is having to change. In the last few years we have been programmed to accept new kinds of families where they are constantly altering with step parents, half-siblings etc. Years ago with the deaths of many mothers in childbirth, I know that there were many families with multiple step-parents but I don’t think these families were ever touted as being ideal, but about survival in a sometimes difficult world. Nowadays non standard families are not usually the result of maternal deaths but because marriage is less popular and the options of divorce enable many people to start a new family. However, like many people I thrived on the permanence of family life but now I am having to look much more closely at how we, as a society, cope with infertility, adoption and donor conceived adults. The main factor which seems to make some situations bearable and others not, is openness. Where there is honesty we can talk about how we feel; where there is secrecy some people are deprived of what we all long for – the knowledge of our own identity and where we fit into the world in which we have been placed.

Friday, 11 September 2009

The continuing journey

This has been a week of medical treatment. I started off on Tuesday with having blood taken to see if chemotherapy was possible and although blood platelets have fallen to 85, it has been decided it should go ahead as planned although the next chemo may be postponed to allow for recovery. Then in the afternoon I went to the hospital to have pentamidine which is supposed to improve my immunity which is suppressed during chemo.

Last time they mislaid my file and I had to wait one and a quarter hours and this time the drug was late arriving so we waited one hour. I then go into a room to connect up the tubes (the nurses are not allowed in) and breath in oxygen for ten minutes after which I reconnect the tubes and put in the pentamidine which I then breathe in for about 20 minutes; the smell and taste are vile and I always feel wobbly afterwards.

Wednesday and Thursday I had chemo at home and I am lucky enough to have the same BUPA nurse who is really very friendly and professional. On Wednesday night the steroids kept me awake as usual all night so I just stayed up and read. I was able to sleep a little better last night thank goodness. Today I have a very expensive injection which also boosts immunity.

My inbox was full of communications from PCVAI, a group which I recently joined composed of donor conceived adults. The current discussion centres round whether sperm donors should be referred to as parents/fathers and is very thought-provoking. Words are very important in our lives and much of the terminology surrounding our situation has been provided first of all by the medical profession and later by the legal profession. When I communicate with people on a personal level we flounder around trying to find vocabulary which means something to us so often the person who has brought us up is called a social father.

The terminology is all new to me but words aren’t because as an English teacher I know that the precision of words is vital to our understanding and communication. I also realise that those people who have defined words for us have been in greater positions of power. Just look at the number of pejorative words connected to women and you can see how the female sex has been kept in a box for so long e.g. master/mistress, bitch, cat etc.

As donor conceived adults we weren’t around when this terminology was created and our parents were often surrounded not only by the mystique of the medical profession but the secrecy of the process and almost a sense of shame about their own fertility or lack of it. Many professions deliberately use jargon to upgrade what they do and make even intelligent people feel they lack knowledge and power. My own view is that a sperm donor is a parent in the true sense of the word because they had aided reproduction. However, I lack all knowledge of my donor parent and his forebears. Whilst I don’t need a Dad at my age, I do need knowledge. Many children of single parents lack knowledge of their paternity, but my knowledge has been deliberately withheld and this has been sanctified by the laws and the medical profession.

Wednesday, 9 September 2009

Ways to uncover the truth

The more I think about DNA matching to find possible half siblings, the more I realise that this is unlikely to happen. Although the database at UKDonor link may now be quite large, there is not much likelihood that many people on there will be of my age.

I have thought about a few ways in which discoveries might be made. It is unlikely that I shall be able to carry out much of this work myself over the next few months for health reasons but I can make a start. I suppose the first is to try to reach out to any people born in the 1940s who know they were donor-conceived to approach UKDonor Link with their DNA. Frankly any people in their 50s or 60s who don’t already know are probably better off not finding out now as it causes so much turmoil and many of the people who could help their understanding could be dead or very old.

So if you do know you were donor conceived but haven’t done anything about it because you thought you were alone, please be aware there are lots of us out here who would love to help.

Secondly, after my fruitless attempt to get help from Professor Lord Robert Winston, I have regained the confidence to retry the official route. Consequently, I have written to my MP, Chris Huhne. I think the human rights aspect previously tried may be exhausted but on a practical level, the numbers of people who are going to need to know their genetic background for medical purposes is going to escalate rapidly over the next few years and I have requested his help on this basis.

The last is more ephemeral. Like many donor conceived adults, I have tried to isolate those physical and mental traits which I inherited from my mother and her family to build up a picture of my paternal inheritance. As I don’t think my father was English I have tried to explore ethnic facial characteristics. What a minefield that has been! At every stage there is suspicion in case I am in favour of eugenics or am in any way racist. Nothing could be further from the truth. If I can build up a picture of a nationality, I may (or other family members) be able to do some sort of paper research into records of the period. It may be truthful that the clinic records were deposited in a skip, but often other records remain and despite the medical profession’s lack of help, it may be possible to locate them.

Monday, 7 September 2009

The mental journey

I’m not sleeping at the best of times at the moment but at some point in the middle of the night I remembered something my oncologist had told me about my mantle cell lymphoma. It was that changes had occurred to my chromosomes. I looked this up on the internet and found that about 85% of mantle cell lymphoma patients had translocation of chromosomes 11 and 14. This might be one of the reasons why I can’t match my DNA with possible half siblings on UKDonor Link. I’m going to have to find out about this.

I am both amazed and horrified at my lack of knowledge about DNA but if I am honest, I have had a steep learning curve about a number of things over the past few months. Unfortunately, there is such a thing as ‘chemo brain”. When I first had chemo in 2007 I was very tentative about asking my oncologist whether the brain and memory were affected by the chemicals. However, he told me that a number of patients reported changes in their short term memory. With me it affected my recall of names and vocabulary which, when I was teaching, I found embarrassing. The chemicals have such an effect physically that I suppose it is not surprising to learn that there is a mental effect too.

Tomorrow I have my blood taken and tested to see if the proposed chemo can go ahead. As I have been having chemo now for 9 months, my blood count has fallen considerably and I am prone to infections. I shall be pleased if it can go ahead as planned because it brings me ever nearer to my goal which is to go into The Bubble to have the bone marrow transplant.

I am very lucky in that I have chemotherapy at home and it is invariably administered by the same nurse who has become a good friend to our family. He has the time answer my questions and give us extra information which is invaluable. As a family, we can do with all the help we can get at the moment and we really appreciate the practical things which people do and the messages we receive.

Saturday, 5 September 2009

A support network

Yesterday my mother was 96. She is a resourceful woman and although very deaf now, is still very feisty and has a good sense of humour. During the Second World War she was nursing in the East End of London at the height of the Blitz. She ran a clinic at the Poplar Methodist Mission but also did some district nursing. At a time when the policemen had to go around in twos she was able to go around in her uniform unharmed.

One of the doctors who gave his time once a week to come to the clinic (this was before the National Health Service) talked to my mother about infertility. It was he who recommended she visit Dr Reynold Boyd in the West End. After the surge of public opinion against some of the early pioneers’ recommendations about eugenics and social engineering, which to some English people smacked of Nazism, these fertility experts seem to have worked without advertising, i.e. through recommendation.

As a very caring person who had grown up in a large family, the possibility of never having children must have been really awful for her. She really thrived on family life. When I had two children she loved being really involved with them, playing games where she was always the baddie and taking them for walks. They loved her sense of fun and good humour.

She has no idea how the revelations about my conception have distressed me and of course I don’t tell her. Her memories of that period so long ago are not good and I think she has buried most of that information. I occasionally try to get a little more information but her memory is not good. After I was born my parents moved away from London and they adopted my brother who was six at the time. He always knew that he was adopted but goodness knows what they told the rest of the family about why they went in for adoption if I was supposed to be their natural child.

After returning home from spending time with my mother I had a really lovely email from someone else who discovered this year that she was donor conceived. It really lifted my spirits so much after the news from UKDonor Link about there being no matches for me. I know that there are hundreds and thousands of other people looking for their families and all we can do is help and support each other as we are not alone.

Thursday, 3 September 2009

Trying to be complete

I learnt some sad news yesterday from UKDonor Link. My mother and I had supplied our DNA at the beginning of June this year in the hope of finding some information as to my origins. The news I received was that so far no matches have been found. I am not sure how large the database is but it is very disappointing.

Unfortunately, not knowing about my conception so late in life means I am playing catch-up all the time. Many more people my age will never learn particularly as their parents could well be dead by now. Others will have passed through life often wondering why they couldn’t relate to half of their family, or in particular to their fathers. Some like me will have developed illnesses which require genetic knowledge which either they won’t have or they will end up suspecting their mothers of having affairs.

Even if, like me, they find out late in life their mothers if alive will not have good memories of events so many years ago. The fact that sperm was not frozen in the UK until 1949 led more than one or two potential mothers to question who actually were the donors. The criteria varied from clinic to clinic, often medical students (in London) but sometimes married men aged 30 to 45. Whether the donors were sometimes the practitioners themselves could result from convenience (the right sperm wasn’t immediately available when the recipient ovulated) or from vanity. I understand that at least 85% of donor conceived adults from the 1940s are completely unaware of their origins because like me they thought this practice was rare. At my age I don’t need a father, even if he were still alive, but I do need a past to discover who I am in terms of genetics, personality and abilities. Everyone has that human right and that has been denied to a particular section of the population for very dubious reasons.

On a personal level, I would love to meet some half siblings. I have noticed how most donor conceived adults write very apologetically about going on so long or having a rant. They have had to do this because mostly other people do not understand, but so many of them seem warm, friendly people and I hope one day to find a half sibling to make myself more complete again. This year I lost my father and half of my family; the gap is enormous.

Tuesday, 1 September 2009

The continuing quest

This week I have to do something I have been putting off as, to me, it is a sign of defeat. I must suspend from my PhD for twelve months. After ten bouts of chemotherapy my concentration and energy levels are suffering. On the days when it is administered the steroids keep me awake all night and I am hyperactive but there are the corresponding lows and as my blood count is dropping the tiredness is increasing.

When I started my research on detective fiction, I never thought for one moment that I would have a detective quest of my own to solve where the clues have been deliberately withheld and where this secrecy has been actively encouraged by the law of the land. I have found articles in the British Medical Journal in the 1940s quite revealing about the debate surrounding donor insemination.

I have looked in particular at articles/letters by Reynold Boyd, Mary Barton, K. Walker and B Wiesner, all pioneers in this field in the UK. Apart from his private practice, Dr Reynold Boyd was employed as a hospital genito-urinary specialist and he wrote papers not only about fertility but venereal disease which may have links to what I am learning about the eugenics debate. The discussion about the legal standing of children born by donor conception prior to 1945 was very interesting as, of course, there were arguments put forward that the type of conception should have been entered on the birth certificate which is a legal document. Those of us born by donor conception have a falsified document and the reasons for this are very dubious. On 27th January Boyd in the BMJ quotes a counsel’s view of the time that “the only proper way to register the birth of a child conceived by artificial insemination is by leaving the columns for the name and other particulars relating to the father blank, whatever may be the subsequent embarrassment to the infant”. Subsequently this debate resulted in a UK law which allowed the social father to be registered as the biological father.

I wonder how many people there are who have no idea about their conception, just a feeling of not fitting into their family set-up. To those of us who do know and are actively seeking answers “embarrassment to the infant” has been the least of our worries.