Wednesday, 30 December 2009

Pieces of the jigsaw

I had some interesting reactions to the photograph I published on Sunday. The New Zealanders are obviously interested in Dr Boyd because he came from New Zealand where he was born, to study in Edinburgh, and then practise in London and Essex. However, I believe the family were originally Scottish as one might expect from the name. Apart from his consultancy work in the NHS, he published several articles in the BMJ and seems to have run a clinic specialising in donor conception for some years. A number of people with whom I have been in contact had parents who used his clinic although we are several years apart in age.

In the 1940s he published a letter in the BMJ contributing to the debate about birth certificates. Although he did not advocate releasing the names of donors, he suggested that the name of the father on the birth certificate should be left blank. Ultimately, it was decided – and made legal – that the name of the woman’s husband should be on the birth certificate and that any children conceived by the wife during a marriage should be considered as children of both of them. This avoided the controversy over legitimate and illegitimate births. Although in a number of marriages, children conceived by the wife during an affair were registered as offspring of the married couple, in the case of donor-conceived offspring this was a deliberate attempt by the couple, the donor and the medical practitioner to allow a falsehood to appear on a birth certificate.

I have sent a copy of the photograph to someone with whom I am in contact in Australia. Her mother had a similar experience to mine at the Boyd Clinic and both her parents were shown photographs on the wall of children whose conception had been assisted by Reynold Boyd. Who knows, mine might have been one of those photographs.

Although I am no nearer in knowing the name of my donor father or whether I have any half-siblings, each piece in the jigsaw gives me a better picture. I know that any newspaper articles will have only a limited effect but it is impossible to sit back and do nothing. Although many of the paper records of the 30s, 40s, 50s, 60s and 70s may have been destroyed it is difficult to see anyone deliberately destroying the records of a life’s work. It is likely that at least some of the data exists in some form. It could be as part of another person’s research paper, in microfiche or mouldering in some filing cabinet – but part of this data exists somewhere.

We are approaching the New Year and I hope that although it will be challenging, there will be some resolutions – to Ray’s case, to my illness and to my quest. But we are not alone. So many others have illnesses, challenges and similar quests. Let’s hope that the new decade will be one of greater enlightenment for us all.

Sunday, 27 December 2009

An interesting picture

I hadn’t expected to be at home this Christmas as my bone marrow transplant was originally scheduled for 6th December. As my ENT treatment and radiotherapy was delayed I am able to spend Christmas with the family but I have to go into hospital almost every day over the next three and a half weeks which has added extra pressure in the run-up to Christmas. However, it is wonderful to be spending Christmas at home. I have been tired but, in fact, it has been our daughter who has been ill. It is incredibly difficult to get a doctor to visit over the Christmas period. Fortunately, she is recovering now but has had a very nasty reaction to the antibiotic.

I did enjoy being able to sing carols by candlelight at our local medieval church and there was a happy atmosphere at the traditional Nine Lessons and Carols last Sunday and at the Midnight Eucharist on Christmas Eve.

But the pressures do not all disappear. Ray had been promised an interim payment by the solicitors for the Biffa Group in exchange for dropping the Court action scheduled for 15th December against them for such a payment. At the beginning of December, they promised to make the payment before Christmas. Every day we waited for a cheque; we were convinced they would feel obliged to pay before 15th December, but nothing. We then became very cynical. Not only had they lied to avoid the expense of the Court action but once more they were playing with us at a very difficult time in our lives.

I am sure that our solicitor, who is being pro-active, will draw the payment out of them but it does make it clear to us that although the Biffa driver has been found guilty in a criminal court of law, the other side are determined to drag this out for as long as possible. They have no ethics.

And now for some news of a different kind. A piece was published about me in the Daily Telegraph on Monday 21st December. The story was also purchased by the NZ Herald on Sunday for an article which appeared on 27th December, as Dr. Boyd, who organised my conception at his clinic, was a New Zealander by birth. The Herald approached me for photographs of myself which I sent but I asked for a photograph of Dr Boyd as it had been impossible to find one in the UK. I said I thought a lot of donor offspring would be interested!

Wednesday, 23 December 2009

It's Christmas!

It's almost Christmas.

I was pleased at the reaction of my immediate family about Monday's article in the Daily Telegraph. They really understood the reason for my decision and my hope that it might provoke discussion. There have been many well-argued pieces about donor anonymity but unfortunately the general public often can’t relate to these and it has to be a human interest story about a particular dilemma which will help them make the connection.

I have felt this all along and have tried to prepare myself for the inevitable criticism of my reactions and disapproval of my decision to make these public. Younger people are, on the whole, more understanding as they are more used airing their feelings in the public arena.

The reactions of the public at large are usually much more sympathetic to the infertile parents and the need for privacy for the donors than understanding of the real dilemmas of the donor offspring. This is because very few people can actually put themselves in our position whereas anyone who has had difficulty conceiving, and this does seem to be more common nowadays, can relate to the feelings of the parents.

As donor offspring, of course, we can understand the desire for children. However, many of us do not feel this is a right. Some donor offspring go on to have children themselves by similar means but many more actually disapprove of the practice altogether because of the problems it brings for the children not only as children but throughout their adult lives

Articles come and go. Interest is ephemeral, particularly these days where so many interests are one-day wonders. Our only hope that each attempt is another pin-prick and that one day there will be sufficient interest and compassion for a group of people who need to know who they are and who, unlike any other group who don’t know their parentage, have been deliberately denied this knowledge to gratify the needs of their parents. I, like many other people, would never deny I grew up in a loving home but sometimes this is not enough. The needs of the offspring are equally valid.


Tuesday, 22 December 2009

Trying to get over it

So what is the purpose of a blog? After all no one is really interested in reading the daily doings of anyone like me who is unknown. We are interested in the diaries of the famous because usually they are achievers and we want to know how and why they acted as they did.

Very often blogs are single-issue forms of writing. Many American blogs are about families, with photographs of their children and their progress. Others are dealing with dilemmas which people are going through. Sometimes it may seem that the writers, like twitterers, are only identifying with the on-line community which they put before their real friends, family and colleagues. In some cases when people twitter a hundred times a day this may be true.

However, in many cases people with illnesses or particular problems feel a certain sense of isolation even in loving home situations. There is a limit to how often you can air a particular issue. In cases of illness, often family members are acutely aware of how you are suffering and you do not want to add to their worries. At other times you feel only those people with the same illness really know what you are going through and it is comforting to receive specific encouragement and practical advice for example about dealing with the side effects of certain prescription drugs.

Some problems just can’t be aired in everyday conversation because they are too personal or to do so may seem self-obsessed. But the problem is still there and won’t go away. Do you just bottle up your worries and let the stress overwhelm you? Of course, being busy with interests, work etc. can take you mind off your own problems but they are apt to surface in the middle of the night.

Again it does seem strange to air very personal problems in the form of a blog – such a very public piece of writing. I started because I knew no one in my situation. Perhaps it is because the on-line community, however interested, is not a real entity like one’s friends and family. In many ways, ironically, it is a safe way of unburdening feelings and concerns. Writing for some of us is a form of solace but you do have to be prepared for the comments. Some are very supportive, others cringingly emotional and you do have to accept that many will just tell you to “get over it”. And that is the purpose of a blog – to get over it – but perhaps also just to build up a little more understanding out there along the way.

Sunday, 20 December 2009

Secrecy is harmful

Up until now my blog has mainly been read by friends, fellow cancer sufferers and people who are donor conceived. Most of them can identify with some of the issues which concern me. However, I think from now on it may reach a wider audience. Probably some people will question why anyone wants to write about such subjects. At first I kept my suffering to myself. Years ago I hardly told anyone I had breast cancer. However, when in the middle of chemotherapy for lymphoma and a search for a bone marrow donor I discovered I was donor conceived, it was all too much to bear. I could not keep it in.

I began to read other people’s blogs; some were cancer sufferers and I could understand what they were going through and it was good to leave words of encouragement. Then I began to find blogs from the donor conceived. This was a new world to me. I was the only person I knew who had been conceived in this way but there are many more of my age who just don’t know. It has all been kept secret for so long but there is nothing to be ashamed of.

Previous generations viewed infertility as something shameful but no one should be made to feel this way and fortunately nowadays we have broken down so many prejudices of the past. By writing about the subject I made contact with other donor offspring who could understand the bewilderment and loss of identity I felt. Although some had always known about their conception, others like me had had to find out later in life and many of these discoveries were very traumatic.

In many cases their parents’ marriages had broken down because of the strain of keeping the secret. Some felt betrayed by their parents because of the deceit. I had a loving childhood and loved both my parents - nothing can change that - but I feel they were pressurised by society and the medical profession to keep my origins secret. Most of us now realise that to bring a child into the world and deliberately separate them from their genetic and cultural origins is wrong and at least we have gone a little way towards remedying this by eliminating anonymity of donors now.

So by knowing your donor it may be that the family which results is not like the usual nuclear family. But so many families are not like that any more because of second marriages/step children and adoptees who have the right to get in touch with their birth parents. Ironically the doctor who organized my conception was keen on looking into family history. It is strange that there is one law for one group of people and another for us. We all need to know our parentage. It is not the same as a casual affair or a one-night stand; our conceptions were quite deliberate and helped by medical science. The need and desire of parents to have children is natural, but should not be more important than the welfare of the child. I am glad to be alive but I would like to know who I am and my biological father’s medical history not just for me - but also for my children.

Friday, 18 December 2009

People make a difference

People make a difference! Just a few kind words from people in the village or via emails and it really lifts my spirits. We also sensed that in the atmosphere when we visited the Royal Marsden Hospital yesterday.

I must first of all say that I have had excellent treatment from my oncologist in Southampton. He was absolutely determined to bring me into remission, which he has, in time for a bone marrow transplant. I am glad we decided to stay overnight with our son before going to the Hospital as a journey up to London via Hindhead would have meant a knuckle-biting experience.

When we returned it was already snowing and the South of England reacts to a light dusting as if it were a major calamity. I was exhausted. There was such much riding on our visit and the last few weeks have been emotionally draining because of the delays in organizing further treatment after the chemotherapy was over. I also had had nine lots of blood taken for specific tests and to carry out another tissue match.

I met both the Professor in charge of the whole unit and the Sister and both were charming and encouraging. Although they have access to the bone marrow donors already found where 9 out of 10 antigens match, they will do a further search in case a 10/10 match can be achieved as new donors come on stream all the time.

I was told that they would provide me with as much information about my donor as they were able. I did explain why I was particularly interested in my DNA and whereabouts the donors came from because of the circumstances surrounding my conception. Apparently if you are English and your antecedents were English, it is quite easy to obtain an excellent match. The problem comes if your parents come from elsewhere even though about 80% of the registered donors are Caucasian.

Of course, not everything is finally arranged and I must have approval from BUPA but the outlook is looking distinctly more positive. By Monday a number of things will be happening and who knows what the results will be!

Tuesday, 15 December 2009

Battle plans

I think this is the longest I have taken time out between blogs since going to Ireland in July. I have been having problems with the internet and today we had a power cut. I keep making typing errors because my fingers are cold.

The last ten days have seen a few changes of fortune and I have had a few contacts from people which have really lifted my spirits. It seems as if just as the weather turns darker and colder we have been warmed by the good wishes from other people.

We have been battling on all fronts lately but it seems that we have won a few people to our side so that although the fights must continue, we are winning support. Certainly Ray will feel happier when the interim payment comes from the Biffa side as it will take away some of his worries. It means that if we do decide to go to the Royal Marsden we shall be able to cope financially.

When I thought I was going to have the transplant in early December I hurriedly did what I could in preparation for Christmas. The following weeks were a blur of visits to various hospitals, scans and seeing consultants so I just sat on things for a while. Now I realise Christmas is close and I still have some presents to buy. I have another small window for my preparations before starting radiotherapy next Monday.

Fortunately there is only one hospital visit this week but it is the Royal Marsden and this is crucial as so much depends on it. I can’t seem to concentrate on anything else right now as I go through the questions in my mind that we must be sure to ask. Whether it is because I am feeling better as the effects of the chemotherapy wear off, or if it is because others perceive me as looking better, or whether things really are turning a corner for the better, I am feeling more optimistic. There is an almighty battle to face in 2010 but if any family is going to cope it is ours.

Wednesday, 9 December 2009

I need a people finder

There are one or two programmes on television both here and abroad looking at people’s search for their father. This indicates there is a real need. For many this search is because they were adopted or the family broke up and they are no longer in touch with their fathers. There are a number of internet sites offering help with this, particularly in tracking public records. This, of course, can be done from home but it is time-consuming and a certain amount of knowledge is required. In many ways it is similar to keen amateur genealogists and I have seen a number of these at the National Archives at Kew. They are usually retired people for whom this has become a consuming hobby and they are very knowledgeable.

However, for some of us there is no easy route. Those of us who are donor conceived can find nothing easily in public records or records which can be available to the public. Our need is just as great as for anyone else but records have been deliberately concealed. I can understand that this is seen by many as protection of the donors but even as my limited research shows, it was much more protection for the medical profession.

When we look at the history of donor conception we see that it is not just about kind-hearted doctors wanting to relieve the suffering of the infertile. There are other issues involved. We know that some doctors used their own sperm and donors were not always as carefully vetted as they should be. A programme on BBC3 about offspring of fathers who left their families made it clear that the offspring suffered as a result of not knowing their cultural heritage, the families they were part of and their medical history. The programme also highlighted the danger of not knowing who your half-siblings were and the danger of genetic attraction to those who were genetically related but who had not been raised together.

Although most of us over a certain age know we cannot legally obtain our records unless a donor or half siblings are actively looking for us, we are also hampered by the fact that most clinics claim to have destroyed their records or they have been destroyed at the demise of the doctors concerned. I have always believed that even if these records are not available exactly in the form in which they were made, extracts may have been used for research, ledgers for accounts and microfiches. My MP contacted the General Medical Council some months ago and I contacted Prof. Robert Winston earlier in the year. Both were unable/unwilling to help. But the BBC3 programme used a people finder. Obviously this is someone used to trawling through births, marriages and deaths registers but is there someone out there who could do something a bit more adventurous. Is there anyone out there who could find out who my father/half siblings are?

Sunday, 6 December 2009

Plan of action

Just when I thought things couldn’t get any worse ………….

they started to get better!

The first was my decision to approach the Royal Marsden about possibly having my bone marrow transplant there. I don’t know whether this will be a better choice or not but I was so relieved when our insurers gave the go ahead. I have an appointment in about ten days time. At last I have another string to my bow and we can weigh up our best options. It is so frustrating being passive and I hate just moaning about things without being able to play an active role in solving them.

Feeling much better after approaching the hospital, the next piece of good news came when I looked at our email – the promise of an interim payment from Biffa before Christmas. This will not only give us more security but it means that if we do decide to choose the Royal Marsden at least we will have the money to cope with all the trips to and from the hospital. The solicitor we have now is so much more proactive than the one who was acting for us before.

We’ve just returned from a lovely weekend spent with our son in London. Even whilst things were at their worst I was looking forward to going, just to get away from the problems for a while. However, it was much better being able to go there with good news and a plan of action. I have just been reading some findings from Australia about how different women react to breast cancer. It seems than well-educated women have the worst psychological reaction because they feel they have lost control of their health and wellbeing. I can completely understand this.

I feel so much better now we have a plan. On our way up to Mitcham I checked out the signposts for Sutton where the transplant unit for the Royal Marsden is situated. It is about 30 minutes by car from my son’s home. Whether or not we go ahead with the transplant there – and logistically it would be more difficult – ultimately the decision must be made on health grounds, nothing else.

While we were in London our son took us to the BBC Television Centre where we looked round the main building and the Media Centre where he works. It was much larger than I imagined and absolutely fascinating. It was great for Ray and I to get away and stop brooding over difficulties. We had a wonderfully relaxing time.

Friday, 4 December 2009

The family face

Tomorrow we go for a much-needed weekend to see our son in London. Fortunately, there has been no hospital appointment today, just the break I need.

The night was cold and frosty and in the moonlight we could just make out the shape of a young deer asleep on the lawn. He is the now nearly grown-up fawn who gave us so much pleasure during the spring and summer. Somehow the deer always come when we are down or unwell.

Today has been comparatively lazy. We took our walk a little later than usual and it was a pleasure to walk through frosty grass and see the puddles clouded over with ice. The sun was shining and there was no sign of the incessant rain which has just poured down for the last fortnight.

I’ve made a decision about my hospital treatment. In the light of all the procrastination I am going to try to get a second opinion from the Royal Marsden. I feel I have to take a more active approach in all of this. I can’t afford to be passive and assume that all is being done in my best interest. At least because of insurance I do have a choice but so many people do not.

The battles are still going on on all fronts and I can’t deal with everything simultaneously but Ray and I feel much better if we have more control about what is happening.

Last Sunday my daughter and I had our caricatures drawn very well at an event we were attending. I am looking at mine as I write. I can’t help wondering who else I see in the picture. Of course, I know I resemble my mother’s family but who else is represented there – the stranger, the donor, the parent I never knew.

Thursday, 3 December 2009

Quality control

This week has been a real mixture of emotions for me. Too many hospital appointments of course. Getting marked up for radiotherapy was an experience. I was talked down to by one radiographer as if I was ga-ga and after it was all over I was handed some else’s schedule of appointments. I came home brimming with confidence. However, that’s the last hospital appointment for this week.

The GP who was supposed to be ringing my oncologist to talk over with him the delays in my treatment by the bone marrow clinic obviously chickened out as Ray got a long spiel about people being on holiday etc. Where is quality control when it comes to healthcare?

We did enjoy going out on Wednesday evening and seeing quite a few people we knew and today it hasn’t been raining, cold but I don’t mind that as we have a lovely log fire and an AGA in the kitchen.

We had a real boost to our morale yesterday evening. An email arrived from our solicitor that Ray is to get an interim payment in the case he is bringing against Biffa for the injuries he received when one of their lorries collided with him. The other side have been quite difficult and miserly up to now but it would seem this solicitor has a lot more get up and go. Ray is really relieved.

A few months ago I was able to get in touch with a cousin in Canada whom I haven’t seen for years. She is about the same age as I am and it has been so good to get to know her as she emigrated as a young child. This year has been very poignant as far as family relationships are concerned. I really felt, on discovering my donor conception, that I had lost half of my family. Unless you have been in that position, I am sorry, but you can’t understand. That is why it has been so good developing a friendship with a maternal cousin.

I can’t begin to explain how wonderful it has been to receive support. It is the only way to get through this.

Wednesday, 2 December 2009

Glimpses of cheer

I’ve just got to write something cheerful. This is just too depressing for words. I apologise that recent blogs have been very serious. I have been very cross about my treatment and when I have been unable to have a go at the medical staff, I have tended to go on a bit of a rant. I know there are many people far worse off than I am but sometimes you need to reach out and things we write strike a chord with other people.

This weekend has been busy as Ray was running a course and the weather was dreadful. About half of the course takes place outside the studio in beautiful nearby locations. We have to have some very patient models who will put up with the rain, wind and cold. Fortunately they are lovely people with a real sense of humour and all went well. I am always involved with the preparations and props so I was just kept busy enough.

As I came home on Friday with very real concerns about whether I really was going to get to the transplant stage and was obviously very unhappy, my lovely daughter gave me so much wonderful support this weekend. We visited a Dickensian Christmas Fayre which took place in the Portsmouth Historic Dockyard – processions, theatre, Victorian market, amusement booths and a pipe band. The following day we went to a hotel in the New Forest for a special Christmas event.

Monday got serious again: a visit to my GP to try to get advice about treatment, then to the oncologist specialising in radiotherapy. I did mention all the delays as he obviously thought my transplant was at the beginning of next year. I should have a CT scan on Thursday when I will be measured up for radiotherapy. The actual radiotherapy will begin in Christmas week! I am just so lucky. There will be 18 sessions, so 18 trips to the hospital at £10.00 a visit. Being ill is expensive.

Yesterday I had a scan at the Nuffield Hospital for the ENT consultant and a hearing test as I have tinnitus but no waiting around – so different from the NHS. Tomorrow I go to the NHS hospital for a CT scan prior to radiotherapy and I will be marked up ready for it to being in three weeks.

So this is me being cheerful! It’s not all bad, of course. Tonight we are going out and on Saturday we are going to London to visit our son – always a treat and absolute relaxation.