Saturday, 31 October 2009

Do It Yourself Medicine

Well nothing is all bad or all good and this period is no exception, a good chat with my son and a visit from a friend today. Ray has a lovely log fire going and my daughter and I sat down to plan how to get me as fit as possible without antibiotics or an operation. I have no idea when I shall be seeing the ENT consultant again or what the medical profession plan to do, so in the meantime I have adopted a mucus restricting diet, Vick’s vapour rub, breathing steam and nose washes. You can see I am having a fun weekend! The point is it is no use being passive; I have a deadline. I know there are other hurdles to overcome: I may not be in remission; the bone marrow donor may not be available on the required day etc. and all this is understandable, but I have to feel that I am doing something.

This weekend other donor offspring may, like me, have received an invitation from UKDonorLink about joining a Panel. I think this may have been a blanket invitation. I would have liked to volunteer but I wouldn’t be able to attend the meetings if my transplant goes ahead so would be useless, but an articulate representative is required to put forward our views. It was pointed out to me yesterday that the Telegraph (Rebecca Smith 29th October 2009) had an article about a fatal heart condition which had been passed by a donor to 9 out of 22 of his donor offspring. I read this with interest. The article says :

It is thought to be only the second time a genetic disease has been passed on via sperm donation.”

But how do we know that? Since so many donor offspring have been kept in ignorance of their origins and even those who do know they are DI conceived, have no knowledge of their biological parent, it is impossible to say how many offspring have been affected by genetic disease.

In my own case, people have said that I am “unlucky” to have suffered both breast cancer and lymphoma. That may be true but since there is evidence of very great longevity in my mother’s family (she is 96, her elder brother lived to 94 and she has younger sisters in their mid/late 80s) there doesn’t seem to be any predisposition to cancer there. Of course, there is no evidence and this may be down to environmental factors but I have the feeling that this is the tip of the iceberg although we may not ever know the truth because of the secrecy surrounding the practice.

Friday, 30 October 2009

An uphill struggle

What follows is a rant and I do apologise. I feel so low today. I went to see an ear, nose & throat specialist yesterday. My ENT appointment for December was brought forward so that I saw a consultant in some special unit of the hospital but I still don’t know the relationship between this unit and the general ENT dept. I am in a Catch 22 situation. He told me that, as a result of the chemo I have been having and a lowered immune system, I have a nasal infection, chronic rhinitis/allergy. I also have a non-malignant cyst and polyps. I can’t have the transplant with an existing infection but they won’t/can’t clear up the infection until I see another specialist. I have had these symptoms for ten months now but it has never been taken seriously before.

I am due to have my PET scan on Monday to see if I am in remission for the transplant but this does not give the ear, nose and throat guy enough information; a CT scan of the head is needed for that. To have that too soon after a PET scan would mean I would be given too much radiation. I need to have a CT scan so that they can determine whether to give me antibiotics or whether an operation is needed to open up the sinuses.

So here I am – no antibiotics and with the knowledge that an operation at this stage is the last thing I want. Then – the ultimate. The ENT guy told me he would WRITE to my GP and the Consultant who runs the Bone Marrow Transplant Clinic. For those of you reading this but not living in Britain you will not understand we are in the middle of a postal strike! I asked if he would telephone them but he preferred to write, so I gave him the Consultant’s fax number and I tried to explain the urgency of this if we are to meet the December 6th deadline.

Now my greatest fear is not that I won’t be in remission, but that perhaps I am but I can’t go ahead with the transplant because of a nasal infection! Over the weekend as a family we are going to try to think of things we can do to alleviate some of the problems, nasal washes, vitamin C, cutting out dairy produce etc. We are also going to try to evolve some strategy to get the professionals talking to each other. I was so high at the prospect that at long last the transplant would be going ahead and now I feel so powerless. There - I’ve got it out of my system so we can go for a walk, face carefully covered of course, in case I am allergic to trees! Anyone who’s got any ideas please post a comment.

Wednesday, 28 October 2009

Trying to understand

On my birthday Ray, Anna and I spent a memorable day with my aunt and cousin. They both have a terrific sense of humour and we are all very close. My daughter appreciates this as she doesn’t have many close family members and I sometimes feel guilty about that but we can’t always control what happens.

Both my parents had lots of brothers and sisters so I had plenty of aunts, uncles and cousins who really provided much love and enjoyment as I was growing up. My adopted brother and I grew apart as we became adults and he gravitated towards my father’s family and I towards the family of my mother. Now I have learnt about my conception I can understand why a little more. I don’t think I would have ever lost contact with my paternal aunts and uncles who were very good to me, but cousins move away because of jobs and marriage and I can see now that the blood tie meant I made more effort to keep in touch with my maternal family.

In many ways, because of their circumstances and education, it might perhaps have been more likely that I would have kept in closer touch with my paternal cousins but that was not to be. Now I have learnt more about my own circumstances from my mother and yesterday from my aunt, I can begin to understand more about the dilemma my parents faced in building their own family.

When they thought they could not have children the natural route was adoption but here they found many stumbling blocks where the birth father (his wife was dead) constantly gave and withdrew his consent. If that had been because he really wanted to look after his son either then or at some time in the future, I would have had every sympathy but it wasn’t like that. Unfortunately, he enjoyed having my parents over a barrel and I won’t elaborate on that any further. So before I was conceived they had agreed to this adoption although they never knew whether it was going ahead.

Then my mother found out about donor conception and I was conceived. This must have been a very difficult time for them. Ultimately they went ahead with the adoption too and my brother arrived at the age of 6 a few months after I was born and my parents then had a ready-made family. I can now see how the family dynamics must have been very difficult. Fortunately, the wider family bent over backwards to welcome my brother. I can see though that there must have been great differences between my parents in how they coped with this new family. I am beginning to understand the dilemma my mother faced and my adoptive brother a lot more now.

Yesterday was my birthday

Yesterday was my birthday and I spent a wonderful day, visiting first my mother then, with Ray and Anna, we spent the day my aunt and cousin.

But whose daughter am I? My mother is alive and well but as I was donor conceived she has no idea who my real father was. I’d love to be fit enough to pursue my quest properly but I may not be able to.

Already there have been chromosomal changes to my DNA because of mantle cell lymphoma which causes translocation of two of the chromosomes. But I am going to have my DNA taken again before I go into the bubble because when I come out my DNA and even my blood group will be different.

What do I hope to achieve? Well I’ve tried the official route of contacting my MP and I have received a stultifyingly boring reply from the Minister of Health. It doesn’t match my situation at all but just describes the changes that have been made so that some DI conceived offspring may have access to some information about their donors provided the donors are agreeable. No one is interested in making any changes which will rock the boat.

They’ve established narrow criteria for a few people to access a little information and presumably hope the rest of us will die out before we make any more trouble. Infertility is a problem that is not going to disappear and the consequences of some of the current and future practices and the implications for offspring really must be considered – not just the wishes of people who want to be parents however sincere they may be.

I can’t do much now before I have the transplant but I hope to record what happens and if possible write a book or magazine article. I think it’s too late now for a TV documentary as I believe it needs about three months’ planning time before shooting. My daughter has geneticist friends and I am hoping that at some time in the future there will be a way of finding out both male and female ethnicity from a DNA sample.

Everything hinges now on a clear PET scan and I don’t even know yet when that will be but if I have gone into remission, my journey into the bubble may begin sooner than I had anticipated.

Monday, 26 October 2009

"Ifs" and "Buts"

My delayed visit to the bone marrow clinic took place today with some surprises. I won’t know whether this chemo has brought me into compete remission until about 12th November. If it has I may be going into The Bubble on 6th December. These dates are provisional because I will still have to have tests on heart, kidney and lungs as well as the insertion of a central line through which the drugs and bone marrow can enter my body. This line will stay in for some months.

There are so many ‘ifs’ and ‘buts’. If the donor is found to be medically fit, if I get into remission, if my health is found to be sound enough, this will go ahead. Christmas is on hold at the moment and there is so much to do during the next few weeks.

Apart from health tests, flu jabs there are all the other aspects. I have been requesting a form from the Inland Revenue on a weekly basis since 1st September for my self-assessment; it arrived today, just in time for the postal strike. I have a new will to draw up so everything is thought about before I go into hospital. Then there is my 96 year old mother. Although during the last eighteen months I have been trying to get her bank to allow my daughter to handle her account, this has not yet been fully authorised. My mother is profoundly deaf but it is so difficult to telephone on her behalf as I have not enacted the enduring power of attorney we initially drew up a few years ago as I may not be fit enough to act for her.

In other ways it will be good to be so busy for the next few weeks as it will give us all less time to think and brood. However, whilst we all can be busy, I know my mother cannot do anything but think, and as a former nurse I know she is worried.

This has been an extraordinary year. I have learnt some things about myself which perhaps I would rather not have known, yet it answers some of the nagging questions I had. I have lost a part of myself and my family and this will never be the same. I may never know my origins or meet my half-siblings but I have met some very helpful, kind and understanding people along the way. One of those I encountered through email is a very pioneering young woman who has gone to the High Court trying to bring about fairness in the way DI offspring are treated. Her thesis has highlighted our plight and she has just had that thesis accepted – so congratulations Dr. Joanna Rose.

Sunday, 25 October 2009

The way forward

It has been so good having a visit from our son. He and Josie had been working very hard all week and didn’t get to us until about 10.45 p.m. They were very tired but I was glad they were cheered by the log fire. We’ve just had a delivery of logs so we are all set for the autumn and winter.

On Thursday and Court papers were finally signed and although we can’t relax, the other side must now respond, having assiduously ignored solicitors’ letters for three and a half years. It is a pity Raymond must keep recalling the dreadful day of the accident and no doubt he will be called to attend yet more medical examinations but now there will be a laid down timescale which, hopefully, the other side will have to adhere to. 2010 looks like being a difficult year for us all but perhaps by the end of it, we shall have come through it.

I am having problems with medical appointments which keep being re-arranged. It looks as if I shall be going to the Bone Marrow Clinic on Monday, but I don’t think they really know themselves. My December 17th appointment at the Ear Nose and Throat Clinic has been brought forward so I may get a bit of help on that front too. The PET scan looks as if it is to be arranged shortly. I would like to know when this will be so we can ensure that no arrangements we make will have to be cancelled.

Hopefully, I can soon begin to see a way forward to planning for my hospital stay. It is going to be difficult for all of us but it is the only way out. I just hope that people will understand that although the focus is on me, it is my family who have to bear the brunt of looking after me and supporting me.

Although my birthday is not until Tuesday, we had a celebratory lunch today as we could all be together – a wonderful day.

Wednesday, 21 October 2009

Walking with hope

Ray and I spent about three and a half hours yesterday with the barrister finalising all the details ready for the papers to be served today after signature. It has meant a flurry of activity in the last few days where we have been able to concentrate on little else. Hopefully after today we can begin to get our lives on track for a little while but it gives us a taste of what is to come next year if the case gets to court. I had two large measures of coffee (which I don’t normally drink) before going to the barrister’s chambers in order to keep myself awake and alert as I normally start to get very tired at midday.

We’re just off on our morning walk. This keeps me not only a little more active, but it is a symbol of normality as Ray and I can shrug off the cares of our lives just for an hour. We have a pact to avoid the really troublesome issues in our lives for that period and just concentrate on the more positive aspects. It tends to revitalise me for the day ahead and I miss it if we can’t go.

I’m looking forward to seeing my aunt and cousin next week. The revelations about my conception have inevitably caused me to re-evaluate my family relationships. I have always been close to my mother’s family, fortunately, and I am so glad I still have them to talk to about my new situation. My cousin has always been an inspiration as she has been confined to a wheelchair for over 30 years since her road accident. Actually “confined” is the wrong word. Nothing confines her as she is a really outgoing, gentle and generous person who gets on with life.

My daughter is coming with us and she laughs when we get together as our voices are all so similar that she can’t distinguish between them. I suppose I really should have picked up on this years ago but I just thought I wasn’t physically very like my father’s family. I am trying to pack in a few visits with family and friends over the next two months as I don’t know what will happen next year but it’s good to travel with hope.

Tuesday, 20 October 2009

A hectic time

I am a little disappointed that my visit to the Bone Marrow Transplant Clinic has had to be postponed but my consultant is unwell. Actually, in some ways the postponement proved to be a blessing in disguise. After kicking their heels for the last two – three years, our solicitors have at last had to take some real action as the papers are due in Court this week and a national postal strike threatens.

Ray has really been pressurised to sign all the papers but amendments he has been requesting for months either haven’t been made or only partially. It is over three years now since the Biffa lorry ploughed into the stationery line of traffic at 58 m.p.h. When we went to the solicitor’s today the papers weren’t available in their amended form so we shall have to wait until we visit the barrister’s chambers tomorrow to sign them.

We really could have done without all this but we know that 2010 is likely to be a very difficult and challenging year with me entering the bubble and Ray having to cope with the case and no doubt fielding fatuously small offers. Although the lorry driver has been found guilty in a criminal court, it doesn’t stop the other side completing disregarding the hardship he has been through and continues to go through.

In the meantime we are trying to keep a sense of normality. Going for early morning walks to try to make sure I am healthy is all part of our routine now. I have to admit I am anxious to know that my bone marrow donor is still available. I am nervous because a near match was found in America but then he/she moved house and couldn’t be located!

After all the months of trying to locate a good match, I don’t think it will be easy to find a replacement and I still have no idea of my own ethnicity and don’t imagine I shall ever know. Males can trace their ethnicity because they have a y chromosome but females aren’t so lucky in this respect. I read about some people desperately trying to find a match because of their mixed race heritage and it is so sad. I didn’t ever think I would have that problem and I would have no idea which groups to target so let’s hope all goes to plan. After our visit to the barrister’s chambers tomorrow, I hope life can calm down for a little while.

Sunday, 18 October 2009

Seeking answers

Good to have a sing again in the choir, despite sinusitis. My breath control is terrible though and I felt quite dizzy afterwards but it was so good seeing everyone as I haven’t been well enough for a while. Singing is good for catarrh so it might be a good idea to get some more practice in.

We have a busy week ahead. As we see the barrister on Wednesday about Ray’s case against Biffa, our solicitor is wanting Ray to sign various documents so they can be submitted to Court. Although we have been urging the case, they have not been particularly active and it is all having to be done at the last minute. Some of the reports definitely need amending and this was pointed out months ago. I think the “no win, no fee” cases are all very well but there doesn’t seem to be the same sense of urgency.

On Tuesday we go to the Bone Marrow Clinic for an update. The strange thing is we have to wait (usually for about an hour) in the same waiting room as patients about to have a blood test. This seems odd for us with very low immunity as some of them will be having tests done because they are suffering from infectious illnesses.

The weather has now turned much cooler and we must order some logs to be delivered. Jonathan and Josie are coming down next weekend prior to my birthday and I’d like the wood-burning stove to be going by then so the house is warm and welcoming. I must say though it never really gets cold because of the AGA which comes into its own over the next few months.

I have spoken to my cousin today and we are arranging to visit them on my actual birthday to celebrate. We’ll go out for lunch and have a natter but I hope to ask my aunt some of the questions which have been bothering me about the past which she may be able to answer. I know neither she nor my cousin knew about my conception but I wonder how my parents explained adopting my brother at six years old, just after I was born. I’m still seeking answers even though I know the big questions will always remain now.

Friday, 16 October 2009

Which year?

I went to the doctor’s today about the catarrh I have had since starting chemotherapy in January. Several times it has resulted in a chest infection which is not good when you have low immunity as it can turn to pneumonia. However, this time it seems to have developed into sinusitis which is rather painful. It also does not look too good walking around breathing through your mouth.

The last time I went to the bone marrow clinic they were rather concerned that this catarrh problem had been hanging around for a long time and suggested I obtain an appointment to see an ENT specialist so that the problem could be cleared up before I go into the bubble for my transplant. Although I explained to the ENT appointment’s clerk that I needed to get myself as fit as possible before the transplant, she did not demonstrate much flexibility.

Consequently, I told the doctor this morning that I would have to wait until 17th December for my ENT appointment. He looked at me dryly and said, “Which year?” Fortunately, we could laugh about it but it is tragic that the NHS thinks this sort of delay is perfectly acceptable.

To be honest when you visit the hospital it is quite an eye opener. Some people are really efficient, caring and working hard. Other people are slow, unhelpful and inefficient. Having had two bouts of MRSA I look at hygiene much more closely and despite all the training, there are still people who think it applies to everyone else except them. This is a very personal remark but it also worries me that so many of the hospital nurses are so very overweight. My mother was a nurse for years and worked very hard but she was almost as slim at sixty as she had been at twenty.

I am very grateful for all the help I have received from the nurses who have boosted my confidence and so much trouble to ensure minimum pain for me, particularly my BUPA nurse. I think though you have to have your wits about you when dealing with some consultants – it’s great when you can really feel part of the decision-making process, but when you feel excluded, when you have to be passive and everything is done to you, for some people, like me this is pretty unsatisfactory.

Fortunately, the staff at the bone marrow clinic are very approachable and when I go to see them on Tuesday, I should get an update on the likely time-frame ahead of me. The journey into the bubble is now well on its way.

Wednesday, 14 October 2009

Doing the right thing

There is quite a dialogue going on in the US about the anonymity of sperm/egg donors. I can’t help thinking about how we in the UK make changes in our laws and the process of thought which precedes change.

A very significant change in UK thinking about people and their rights took place in the late 18th/early 19th centuries which led to the abolition of slavery. Typically in Britain this took place in two stages. Firstly trading in slaves was abolished throughout the Empire in 1807. This allowed owners to keep the slaves they already had but not acquire new ones i.e. the contracts which existed in the past regarding the sale or purchase of slaves were not invalidated and property was given its usual pre-eminence. Later in 1834 slavery itself was abolished although, in a typically British fashion, there was some small print.

This shows that although the legislators must have been aware that slavery was a violation of human rights, they put the convenience, wealth and commercial practice of the slave owners before the rights of the slaves. So even when a contract is regarded as being morally wrong, it must be upheld by the law.

Similarly, when the Human Fertilisation and Embryology Act recently came into force in the UK, there was an acknowledged realisation that donor offspring should be allowed access to their conception records after the age of 18. Once again although there has been a moral and psychological awareness of the predicament, commercial practice and /or contracts signed prior to 1991 must be allowed pre-eminence. So no hope for the thousands conceived before that time. Whilst I am not equating slavery with advances in human fertilisation, I am looking at the way the law is used to protect the indefensible and how changes occur so slowly that it would seem that there is a hope that the difficult and quarrelsome people will die out.

Whilst many people drawing up the contracts which protected donor secrecy in the past may have had good motives in mind, our attitudes towards children, adoptees, relationships, families and sexuality has moved on. We should not be using the law to uphold contracts which are morally and practically wrong. Of course safeguards will be needed to protect all parties but this is not insurmountable. We’ve had our first law – how about the second?

Let us have the courage and will to tackle the moral issues which beset us in the 21st Century and instead of using delaying tactics in the hope the problem will go away, let’s do what is right – now.

Tuesday, 13 October 2009

So what is a parent?

Just back from a weekend in London with our son. It was great to relax, get away from all the pressures and enjoy all the wonderful food that was cooked for us.

I had a reply from the General Medical Council about access to my records. As I thought, records from private clinics were not normally passed to the GMC and since I was born before the National Health Service was established, Dr Reynold Boyd, who carried out the donor insemination process, was legally entitled to destroy his records. Yes, that’s right, medical practitioners in the 20th Century were perfectly entitled to destroy the genetic records of donor offspring! Of course, things will have changed now won’t they? After all slavery has been abolished, women have the vote and buildings must have access to the disabled …..

Not only haven’t they changed but there are people steadily working to ensure that the old records are never uncovered. Why? What were they doing that needs so much shrouding in secrecy? In countries where there is less secrecy donors may have decreased in number but parenthood is not a right. New donors may welcome the opportunity for more openness leading to a different kind of donor profile. This may well change the concept of the nuclear family but that has been changing anyway. There have always been families of stepchildren and half-siblings but now we have new families with parents of the same sex. Like it or not, the family is evolving and adapting to the age in which we live.

In America, lawyers such as Julie Shapiro are trying to define what makes a modern parent. Is it the person who brings you up or is it your biological parent? This debate is not easy as so often the family situations are complex and individual. However, at least a debate is going on. In Britain it is as if the debate has taken place and everything is solved. The new Act of Parliament falls far short of resolving the situation. The law must keep up with the way medical intervention is “assisting” human fertility.

In all this wonderment at the advances in science we must remember that the family created is different from the outset. It is not only the wishes of the parents and donor who must be considered but the wellbeing of the offspring who are not present and not legally represented when the original contract is drawn up. Third party intervention and the presence of a legal contract make it entirely different from normal reproduction.

For every step forward I take in trying to find out my genetic parenthood, I seem to be knocked back two. It is very dispiriting especially at this time. However, I know that there are people who have been trying to breach the Establishment walls of secrecy for some time. Those advances in the treatment of women and the disabled also met with fierce resistance or indifference.

Friday, 9 October 2009

The Bubble is drawing nearer

After a fortnight of Indian Summer weather, the warmth and calm have disappeared. This has been replaced with a cloudy sky, some rain and a real drop in temperature. However, there is compensation in the vibrant colours of autumn. In our own garden the mountain ash are particularly beautiful with their leaves on the turn and colourful red berries.

Autumn is a timely reminder of the fact that entering the bubble is drawing nearer. With possibly only three months to go before I take on a new DNA and blood group, I am still very concerned about the old ones. I have been reading some pretty horrifying stories about egg/sperm donors who become seriously ill and who have a dilemma about notifying not only the egg/sperm banks about destroying their donations so that future possible offspring are not affected, but also about notifying those offspring that now exist through their help. They shouldn’t have to feel that their anonymity would be violated.

In the past, some clinics were less scrupulous than others about researching donors’ medical histories but even where they were scrupulous, many slow-onset diseases may have affected donors’ own parents as they reached late middle age and may not have been known about at the time when the donor’s details were recorded.

What does this mean for donor offspring? Many who were told early in life, but who don’t qualify to know their background under the new UK Human Fertilisation and Embryology Act, do not know their medical backgrounds and so must have huge doubts about their own futures and having children. This is hideously unfair. For those of us coming to this knowledge of our conception later in life, we have possibly already had children.

If, like me, they have reached middle age only to be struck down with illnesses/diseases which are not found in the family they thought they were part of, they have had no opportunity to prepare, to alter lifestyles or to get regular check-ups. We also pass on to our children a heavy burden of doubt about what is an environmental hazard as opposed to a genetic heritage. Anonymity of donors could still be maintained if a third party were to take charge of examining and holding records which could be available to donor offspring. This probably won’t help people in my age group where records have been wantonly destroyed without any regard for the offspring created. Maybe it could stop records being destroyed in the future and help just some of the people over the age of 18 who are not helped by the new law.

I’d like to think that part of my journey could help.

Wednesday, 7 October 2009

A complex journey

The last few days have been quite grim as I have come off steroids. It’s the same every time and all chemo patients will know what I am referring to. The physical effects and tiredness are actually easier to cope with than the depression which hovers like a storm cloud.

However, as the week progresses I know I shall get better and my son has invited us to London for the weekend to be thoroughly spoiled. Having something to look forward to is really important.

When I embarked on my journey into the bubble I thought that the preparation for the transplant, the isolation and subsequent battle of host versus graft disease would be my main battleground. Of course, it still is. No other battles can be fought if you’re dead! However, because of what I have learned along the way, other battles have emerged – not just for me but for all seeking the right to know their true identity.

I have been reading a very interesting statement which is a charter of donor conceived people’s rights. I’m not sure where this originated from but it compares the rights of all human beings as set out in the Universal Declaration of Human Rights, with those actually enjoyed by the donor conceived. Of course, the Declaration of Human Rights is a statement of ideals ultimately, in that not all countries of the world recognise those rights, but we tend to think that the more sophisticated and developed countries of the world do uphold those rights. However, ironically, it is probably these same sophisticated, developed countries who have actually withheld them from the donor conceived.

Whilst we look with horror at the way women are treated in some parts of the world, at how slavery still exists and children are exploited, we might well look in our own backyards. It would be good to think that we can move towards fairness for all without encountering prejudice, derision and complete lack of interest. Then perhaps the real storm clouds will be lifted.

Monday, 5 October 2009

Three months to go

Just about three months to go. Am I being reckless in saying that? There are so many imponderables – I may not get into full remission soon enough, my health may not be good enough and will my possible donor still be available? The last question hangs over me like a cloud.

Nevertheless, things have worked out so far, not necessarily right on schedule, but they have worked out and I must have faith that this is what is going to happen. This means I must make plans, not only for myself, but the family.

My mother is 96 and I don’t think we ever imagined that she might outlive me, but this could be the case. I have had serious problems and delays in trying to transfer my running of her bank account to my daughter but this must be done. Similarly, I must look at my mother’s will and redo mine so that they are up to date. This sounds very morbid but if we can organize things so that she and the family are going to be properly looked after, there is less for me to worry about.

I have had an on-going battle with the Inland Revenue. I am supposed to fill in a tax return by the end of the month, but despite my phone calls and letters they will not/cannot send me the correct form. I can’t imagine they will be very sympathetic if I say that I have not filled it in because I am not well or in isolation.

All that aside, surrounding me are really great people who have carried me through this difficult time. Whatever my views about somewhat mixed medical treatment in the past, I cannot fault the way I have been treated this year. I feel more involved in the decision-making for the first time which, for someone like me, is crucial.

A few days ago the Bramley apples were harvested from the garden before they are brought down by the autumn winds. The tree is very heavy anyway as its boughs have not been pruned for about three years – we’ve had other things on our minds. Somehow over the next few days the crop will be peeled, cored and blanched. Apple pies will be made and frozen. The normal activities of preparing for winter will have been accomplished – a winter perhaps like no other.

Saturday, 3 October 2009

Our medical history

I’ve had my last chemo for a few weeks as I am due to have a PET scan to see if I am in remission yet. If I am, then the real journey can begin. However, as usual the steroids made me very hungry and hyperactive and now I’m experiencing the downside of withdrawal.

I did see an interesting programme on television a few days ago about twins which made me understand the significance of genetics and epigenetics a little more. I can see that genetics have a major influence on our health but even they are affected by what happens in the womb and our lifestyle.

To be honest, the real problems of the donor-conceived are about identity, culture, genealogy and even ethnicity but nobody is very sympathetic about that so at the moment I am concentrating on the very practical area of our medical genetics and the fact that we don’t know about our history.

I’m not just thinking about Huntingdon’s disease, haemophilia or muscular dystrophy where you might have to consider the risks of marriage and children quite carefully. But it’s also about prevention. For example, I have always known that there is a lot of arthritis in my mother’s family and I have taken care to adopt a diet which seems to keep me relatively free of its effects.

Of course some diseases can strike out of the blue. Not all cancer or heart disease is genetic. However, I have a friend whose sister suffered a heart attack so he went for a check-up himself and found he had some serious problems which, fortunately, have been put right. It’s not about living in fear, but if we know that some members of our family have had problems we can organise check-ups or perhaps keep off the Pill or HRT. It is quite difficult when you discover that cancer/lymphoma is at stage 4. On the other hand, if you know that genetically your family history is good, you can concentrate on living a healthy lifestyle without worrying that an unknown genetic factor will affect you.

That’s all we ask. Is it so difficult? Must this information be a secret? Yes I know there are lots of people who know very little about their medical history and that is both sad and difficult, but we are the only group where a commercial contract has existed between the medical profession and our parents/donors to deliberately deprive us of this knowledge.

Thursday, 1 October 2009

The power of the word

I wrote today’s blog just before I went to see my MP but having a sleepless night after the meeting on Monday I just had to get up and put pen to paper to get my feelings out of my system so I used what I wrote then instead. I am grateful for the thoughtful comments which make this worthwhile.

For the past few days I have been struck by how calm and still everything has been when we have gone for our early morning walks. The large oak and beech trees in Westwood have been standing for so many years it puts our lives into perspective. The calm has prepared me for what may be a battle to come.

Since finding out about my conception I have been very struck with the way in which other donor offspring are handling the issue. Some have taken cases to court which has required determination, money and much research. Others are tackling on a daily basis comments on the internet and judgements by lawyers and medical staff which take no notice of the needs of donor offspring. They are very articulate and knowledgeable people.

As a newcomer I have much to learn and I am aware how much chemotherapy has weakened me mentally, physically and emotionally. I could never have imagined how the news would change me and my concepts of identity and family relationships. I could never have anticipated how these changes would come between me and the other interests I have had, taking me over and forcing me to rethink just about everything.

Anyone who has had chemotherapy will know not only about the overwhelming tiredness but also how concentration and recall are affected. I feel very conscious that I am less articulate than usual which affects my confidence. However, this is not a time to sit back and give up. I have a wonderful cousin who has spent 37 years in a wheelchair without an ounce of self pity. No, this is a time for coming to terms with my limitations, but maximising my assets, one of which is determination. In his poem Digging Seamus Heaney looks back at his forbears’ much more physical life on the land and says:

Between my finger and my thumb

The squat pen rests.

I’ll dig with it.

The power of the written word is strong and who knows what may come of it.