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.

Sunday, 29 November 2009

Battles on all fronts

When I knew in November 2008 that the lymphoma had returned and my only course of action was to prepare for a bone marrow transplant, I knew it would be difficult, but I had no idea how many battles I would be fighting on so many fronts at once. I knew that it would be hard to get the disease into remission, but I had no idea that I would have to be the one to prompt consultants into taking action. If I did not have private insurance and was relying on the National Health, I am pretty certain that the transplant would not be possible because of the delays.

I now know that I have to watch each specialist like a hawk. Of course, some are absolutely excellent but if the key personnel guiding your treatment are not really efficient, then it really is a matter of life and death. I had hoped to have a pleasant relationship with all the medical staff but I realise I must be vigilant and assertive at all times. This is easier said than done when you are in a weakened state. Sometimes it is easier being assertive for other family members than for yourself.

But life goes on. We really could do without this wretched case against Biffa. On of their lorries ran into the back of a stationary line of traffic at 58 miles an hour. Ray was in the penultimate vehicle. The driver made no attempt to stop. What he was doing I do not know. He was prosecuted and found guilty. I don’t know how the other people in the traffic are faring but it has been very difficult for Ray who has been physically, mentally and emotionally damaged.

He has had a lot of medical bills resulting from the accident and the time spent attending his medical appointments has meant time away from the business. The papers have now been entered into Court which may mean that a timetable will be set up which the other side must adhere to but we expect all sorts of ploys to enable them to have more time – but why? The Biffa lorry driver was guilty – why not do the honourable thing and pay up?

Ray has had all the medical examinations necessary for the case and at each stage the other side could have suggested a professional of their own choosing but they chose not to answer letters. No doubt they will now want their own professionals used as a means of delaying payment still further. Do they hope we will give up? Do they hope we will run out of money? Do they hope I will die and Ray will not want to pursue the case? If Biffa were an honourable company they would intervene and let us have whatever time we have left to spend together in a calm, secure and stress-free atmosphere. But that begs the question – is Biffa an honourable company? Too many battles on too many fronts. I just pray for the energy to go on.

Friday, 27 November 2009

Tears of Frustration

I came home today after my visit to the ENT specialist and burst in tears of frustration. He couldn’t understand why I hadn’t been referred to him earlier, considering I have insurance and I have been suffering for eleven months. He told me that I must have at least a month of high-dose antibiotic specially designed for sinusitis as well as nasal washes. He has arranged a CT scan for me (in the middle of radiotherapy!) and warns me I may need an operation. He knows this may put back the transplant. I have explained that the lymphoma may grow back and he understands my dilemma.

Some people, whether they work in the private or public health area, are really efficient (like my oncologist) and others just can’t get their act together. What worries me now is if the Bone Marrow Clinic are inefficient over their administration, how good are they at their job of doing a transplant? How concerned are they about individuals? How observant are they? Do they have a sense of urgency?

With the NHS we are encouraged to be passive and have things done to us. When going privately, we seem to have more say about our treatment. The specialist today asked me about my hearing; obviously ear, nose and throat are linked. I explained that I had had two types of tinnitus since having a reconstruction operation after in situ ductal carcinoma so I know he understands that I have been put through the mill by the medical profession.

On Monday I should start with the radiotherapy. Perhaps they will be kind enough to let me know how long I will be having radiotherapy for as it’s been difficult arranging other medical appointments around it. There are so many ways in which the NHS is good but they just don’t get the idea that everything does not revolve around them. Of course the treatment is essential but when you contrast the NHS attitude with that of the private sector it’s like chalk and cheese.

It’s really made me question whether I want my transplant done in the NHS hospital. I have talked to BUPA who have told me I qualify for a private transplant but I would need to find out whether the same bone marrow donor would be available for a private transplant as for a National Health one. Nothing is ever simple. It would be very difficult having not only the transplant done in London, but attending all the hospital appointments afterwards which amount to about three a week.

Wednesday, 25 November 2009

Testing Times

On Tuesday I had lots of tests at the hospital on kidneys, heart and lungs to ensure I am medically fit to undergo a bone marrow transplant. I had been disappointed that I would not be admitted on 6th December but there were still some problems to be overcome before it could all go ahead. There was some remaining cancerous activity and it had been decided that I should have radiotherapy. In addition, I have had chronic problems for eleven months with catarrh and a cough.

Unfortunately, although my oncologist moves very swiftly and happily between the NHS and my insurer, BUPA, not every one is so quick and now I have been transferred to the care of the Bone Marrow Unit. I wrote a letter to the Transplant Consultant which Raymond delivered by hand to her secretary on 2nd November, indicating that it might be quicker to use a BUPA consultant for my ENT (ear, nose and throat). To cut a long story short, the Consultant when telephoning us 10 days ago denied having received the letter but promised to arrange an appointment.

Yesterday, while I was having my tests, Raymond collared the secretary to find out what happened to the letter. She admitted receiving it and said it was attached to my file. Surprisingly just 10 minutes before I was due for my final appointment of the day, with the Transplant Consultant, I received a telephone call on my mobile to say that an ENT appointment had been made at a BUPA hospital on Friday! Only three and half weeks late. Unsurprisingly, my admission has now been put back to the end of January. The Consultant made a number of excuses about why she hadn’t seen the letter and I also reminded her that I wanted to start the radiotherapy. Today at long last we received a phone call that I have an appointment with radiology on Monday

What is disappointing about all this is the procrastination and evasion of truth. It makes you lose confidence in people. Raymond even asked me whether I might prefer to have the treatment at the Royal Marsden Hospital in London. If I lived there, I certainly would but it is not just the difficulty for visitors during the time I am in hospital, but afterwards I shall have to attend three times a week for some time which makes this impossible. So I am stuck with the hospital I have been attending (although to be fair there are some very good consultants there). I know though that we are going to have to be super-vigilant to ensure the correct care.

However, I do now feel that although my admission has now been postponed, everything is in hand to ensure I will be fit for admission and, therefore, I should stand a better chance.

Monday, 23 November 2009

Window of Wellbeing

This week could be a turning point as far as my treatment is concerned. There is so much still to do before I am admitted to hospital and my diary for the month ahead has been deliberately kept blank so I can fit in the radiotherapy and other hospital appointments. But there are also people I want to see, both relatives and friends.

I had a telephone call from someone who should be a close relative and who didn’t even know I had been ill for nearly three years but he decided some years ago, for whatever reasons, that he didn’t want to be close to Ray and me any more. Now he knows I am seriously ill he wants to know if I’d like him to visit. I think, from past experience, that this is more about assuaging any guilt in the future if I don’t make it.

No, the people I want to see are those with whom I have been in regular contact, particularly during the past three difficult years. They have been a source of strength. They have their own difficulties too and we have been able to lift each other up and have good times together. Some people are not close friends, just acquaintances, but they too have lifted me up with their comments, enquiries and sense of humour. Living in a village means we see other villagers quite regularly and this contact has been valuable and will continue to be important for Ray when I am in hospital. Some real boosts to my morale have come from the internet, comments from people I have never met.

As I’ve discovered other people suffering from the physical effects of cancer or lymphoma, and those suffering from the psychological effects of being donor conceived, I hope I’ve added my feelings of empathy. Although we live in an enormous world which can seem so anonymous, the reaching out we do to each other is so valuable, particularly where our experiences overlap and we can offer not only sympathy but real understanding.

This window of physical wellbeing may be short-lived as I must start radiotherapy soon. However, feeling not only better physically, but also being mentally much more alert, has been such a boost. I relapsed last November, learned of my donor conception in March and entered a real trough of despair as I thought I would never find a bone marrow donor. Gradually I have been climbing out of the trough. I know there are immense difficulties to come but survival is a very important instinct.

This week could be a turning point and I must make the most of it.

Sunday, 22 November 2009

Via Media

For well over 50 years, Alistair Cooke, an English-born journalist, broadcast his Letter from America which monitored the pulse of life in the USA and interpreted it for listeners in other nations. He would always start his letter with an anecdote and it was always, I repeat always, impossible to second guess where this anecdote would link to contemporary events and his theme for the broadcast. I was recalling this as I read through my emails yesterday.

It was the end of a satisfying day and I was sitting in front of our wood burner in which we were burning the birch logs which Ray had gathered that day. Prices for fuel are so high nowadays that many of us are turning to more traditional ways of heating. For Ray, a walk on common woodland in a neighbouring village brought to light some newly felled trees. On investigation these were available for anyone to use. Consequently, he has made a few trips in the Jeep and brought them back for sawing into suitable lengths and our woodpile has grown.

Perhaps this is going to turn on a well-known phrase about woodpiles? No, I have foresworn racism, multi-culturalism and eugenics. Perhaps this is a homily about the satisfaction to be obtained from hard work resulting in a timber harvest. Perhaps it is symbolic of the fight of the small man, the individual, against big business such as the power companies.

Possibly the latter has the most relevance to my emails and the fight in which I, and others like me, are engaged. Certainly, those of us who have been involved in academic life are used to producing arguments. These are well-developed, factual and objective theses substantiated by evidence. These arguments can win over minds and develop intellectual thought and this approach is vital, particularly if laws are to be changed.

However, we are also won over by other means. Newspapers and television, even blogs, thrive on human-interest stories and these use more emotive language to do just that – provoke emotion. Sometimes this emotional approach can change people’s minds but the problem is that these emotions do not always last.

When we read the newspapers we gain our factual knowledge from the front pages which we hope will contain some objective reporting but then we turn to the inner pages, to the well-respected opinion writers who interpret these events and help to shape our thinking. Like Alistair Cooke, their writing often contains anecdotes but it is also evidence-based. The controlled subjectivity of this writing provokes discussion and forms opinion. For most people this is more accessible than academic or purely objective writing. We need personal opinion based on developed thought not just an outpouring of emotion. In order to win both hearts and minds several types of approach are needed.

Saturday, 21 November 2009

Stir-up Sunday

Feeling better than I have for months as effects of chemo wear off. This is a window between chemo and radiotherapy, but it is so great to feel normal even if it is only for a very short time. Still no ear, nose and throat appointment. I don’t think the consultant has been in touch with BUPA (my insurer) at all but is still relying on the NHS which could take weeks and, therefore, delay my transplant further.

I shall be going to see the Bone Marrow Consultant at the Transplant Clinic on Tuesday after all the tests on my heart, lungs and kidneys so I shall tackle her then but there have now been weeks of unnecessary delay. The irony is that BUPA say just a phone call from her is all they need; she can do the follow-up letter later.

Otherwise I am trying to use my time profitably, not just preparing for Christmas although I am marzipanning the cake and making mince pies today, but also trying to label everything so it will be easy for my husband and daughter to find where everything is when I ask for various clothes to be brought into hospital. Ray has just planted some daffodil bulbs today and they should be up when I come out of hospital – if I ever get in!

After Tuesday I hope we shall have some idea when the radiotherapy will begin and how long it will be for. Then Raymond can plan if he is going to France to check on the boat and I can sort out my diary more effectively. However, I don’t know whether the consultant will have got round to sorting this out by then which is worrying.

It was wonderful walking in the woods this morning; it was so still. It’s strange, my parents were quite urban people but from the very start I have always loved the countryside and fortunately, although Ray was brought up in the town initially, he loves fishing and country pursuits. Perhaps my donor father, whoever he was, loved the country.

Traditionally tomorrow, Sunday, was Stir-up Sunday. The name comes from the opening words of the Anglican collect for the day which began with “Stir up…” but for centuries it became the day in England when people made their Christmas puddings and every member of the family gave the puddings a stir and made a wish. The next year for Ray and me is likely to be very difficult. Ray’s case progresses only very slowly and the other side will refuse interim payments wherever possible to try to force us to accept a low settlement. For me the battle is for my life and the result may be inconclusive but we both wish that we are given the strength to cope with what lies ahead and that a year from now we will be looking at a happier future together. That will be our wish for Stir-up Sunday.

Thursday, 19 November 2009

Preparing and adjusting

This is a busy time of preparation for most people in the run-up to Christmas. Often it is a very happy and sociable period in our lives. Thinking that I was to go into hospital at the beginning of December, I have in fact written cards and bought most of the presents – even wrapped them too.

However, there are this year additional preparations for me. I have to see the dentist and opticians to ensure I am healthy before going into hospital as I shall not be able to go for treatment for about 12 months. There is a will to sort out and my mother’s finances and well-being for the period when I shall not be able to visit her.

Going to the opticians the other day I found that my sight had only slightly deteriorated with the chemotherapy which lifted my spirits a little. However, I was asked lots of questions about my family’s eye health. These I would have readily answered just a year ago, but now I have to say that half my family medical history is missing. Some conditions such as glaucoma are inheritable but like quite a number of people I know nothing about my paternal family. For years I told absolute lies about my medical background – unknowingly of course. At least if you realise you have no knowledge of one side of your family you don’t give false information which can undermine diagnoses.

Next to the new dentist. Gentle reminder to brush the inside of my teeth more but no fillings needed. Refused to go to the hygienist as I caught an infection from the previous dental surgery. The dentist proved quite understanding and he will scale my teeth himself – for a higher charge, of course! Receptionists keen I shouldn’t really have to pay for my treatment as I am seriously ill but I’ve looked through all the literature and I don’t fit any of the categories which are exempt as I’m not claiming any state benefits. To them that hath more will be given!

Yesterday was Will day. It is quite difficult deciding who shall have what and how you’d like your funeral service to be when you desperately want to stay alive. I suppose once it’s done it can be put away and forgotten about, one less thing to worry about.

Today I have been shopping with my daughter for her Christmas present but this was very pleasurable. We had a leisurely lunch in town and we enjoy each other’s company. We all wanted the transplant before Christmas but we are gradually adjusting.

Tuesday, 17 November 2009

Multiculturalism or Eugenics?

Is multiculturalism another form of eugenics or social engineering? Many of us who are donor-conceived, particularly between the 1930s and 1970s, realise that eugenics played a part in our conception, but another story in the Timesonline 16th November 2009, is very sad and perhaps related to our plight.

I had heard about the forced migration of children from the UK to Australia but did not realise the true consequences until I heard about the apology from the Australian Prime Minister, Mr Rudd, and proposed apology from Gordon Brown. These migrations of children from children’s homes or taken from unmarried mothers, occurred during the 1930s to 1970s. They were separated from their country of origin and families, told they would have a better life in Australia and then sent to institutions there.

Children were placed in UK orphanages for a number of reasons, but often because one parent had died and the remaining parent had to work and could not look after younger children. Many of these children had older siblings. In some cases “orphans” were told that their parents had died when this was not true. The institutions in Australia were sometimes much worse than those in the UK and they were physically and sexually abused as well as being exploited for work. In those days Australia, in particular, wanted white migrants from particular areas of the world such as Britain, who could add to the workforce.

As they grew up, the migrants tried to get in touch with their wider families back home but at every stage they were obstructed and often lied to. Seeing these migrants, many of them quite elderly now, was an emotional experience as they still felt, all these years later, the wrench from the life they had known and the separation from their families, culture and history. One woman questioned why they had been sent away while Britain had then later allowed and encouraged so much immigration from other parts of the world. It made no sense to her.

In the last few years there has been a very definite move towards multi-culturalism. Naturally most people in this country think that we should get on with and understand people from other cultures. Racism is nasty and cruel as we all know. However, a lot of these moves to encourage immigration were not only political but also motivated by odd, personal reasons, in order to make Britain a multicultural experiment. In GCSE English exams it was possible to pass an English exam without encountering any English poetry. All the poetry studied was written by non-English nationals. Most of us are proud of the number of different nationalities which go to make up our background but we perhaps question the motives of government initiatives either to restrict or widen our national racial mix artificially for political reasons.

The other themes which permeate this sad tale of forced migration are firstly, the total disregard of the importance of everyone’s genetic roots, nationality, culture, history and family. The second theme which comes to the fore is the total disregard for the children. As children they didn’t matter; they existed to meet the needs of other people and could be used like pawns in a game of chess. Donor-conceived offspring can totally sympathise with their overwhelming sense of loss and their frustration at dealing with hostile authorities who use secrecy to justify their dubious actions.

Sunday, 15 November 2009

Natural Selection

Darwin’s theory of evolution makes us evaluate the way in which human beings relate to the whole animal kingdom and how we have evolved as a species. The study of the human race and the nuclear family is fascinating. However, many of us who are donor-conceived have an overwhelming sense of loss or disconnection. We may well have one side of our family to whom we can relate but even they have nuclear families which are not the same as ours. I always knew that I did not relate too well to my adopted brother as we were very different people, but that I had a very strong connection to my mother’s family. I admired and loved my father’s family but there was not the same closeness when my cousins and I grew up. As my father died when I was at school, I never had time to explore our relationship in the way I would have liked.

When I was diagnosed with lymphoma I realised I would need to let my son and daughter know more about their family – not doing a family tree but explaining about family members, personalities etc. for when they had children of their own. This is when I started to look more closely at my family and relationships. I realised that once my father’s brothers and sisters had died, the closeness was lost with my paternal cousins and that although the family was very middle class, in fact they were very different from me.

This year my mother confirmed to me that I was donor-conceived. It was a shock but not really a surprise. Once I started looking at my life and relationships more honestly, I could see all the anomalies to which I had closed my eyes. Once you have children, you start to look much more at where they and you come from. Our heritage becomes very, very important. Nowadays, we have moved away from the 1960s with its insistence that everything is influenced by our environment. We are realising, not just from an anecdotal point of view, but from scientific study, that genetics account for more and more of our behaviour, talents, personality and physique.

This is why it is important for us to convey to other people that deliberately creating children who are designed to be separate from their genetic and cultural backgrounds is cruel. Recently a number of us were thrilled to learn another donor-conceived adult had discovered a half-sibling. We understand the joy it must give and it gives hope that such a discovery may be possible for other donor-conceived people, despite a deliberate policy by the medical profession and others to ignore our deep-rooted needs. Our right to be genetically in touch with our families is just as important as the needs of infertile couples to have children. However, our needs are not given the same prominence. This is not only because infertile couples are more vocal, but an industry exists and professional careers are being made on the back of infertility.

We are making much of Darwin’s anniversary this year – a pity we don’t really take on board what natural selection really means. This does not mean that infertility should not be helped, any more than illnesses should not be cured, but it should not be done at the expense of damage to other people.

Friday, 13 November 2009

Weathering the storm

The wind outside the house is very strong and the air/sea rescue helicopter has been hovering nearby so there is a vessel floundering somewhere in the Western Approaches to the Solent. Our hearts go out to them because we too have been caught in storms at sea.

I can’t sleep. The day has been a rollercoaster and it all started so well. The oncologist on Wednesday confirmed that the Bendamustine had worked and the lymphoma had dramatically reduced. They don’t normally do a PET scan and I would have been signed off as in partial remission (mantle cell lymphoma never completely disappears). However the PET scan was done for the bone marrow transplant clinic and revealed two tiny areas of activity. My oncologist reckoned this would be dealt with by radiotherapy and if I consulted a BUPA Ear Nose & Throat specialist (health insurance) I would get my nasal problem solved in time to meet my 6th December deadline.

The Bone Marrow Clinic move in less dynamic fashion. Although they were the ones who wanted a specialist to deal with my mucus problem it had been left to me to get a medical appointment. This turned out to be done not by a proper NHS consultant but by some sort of quango assisting the NHS (probably set up to reduce the Government waiting times). This was a great diagnosis but no treatment.

I found it impossible to reach the Bone Marrow Clinic to find out what was going to happen but eventually I found someone today who relayed a message to the consultant. Communication is not a strong point. Having told me that my admission date would be 6th December, and the family having come to terms with my being in hospital over Christmas, this was all changed. My treatment would be determined later this month. What a waste of time! Eventually they confirmed that radiotherapy would be needed but not started until after 24th November and after prompting from me, that they would find a BUPA Ear Nose and Throat Consultant which will, at least, shorten the waiting time. I insisted I would not wait until 17th December for my NHS appointment as I had already had this problem for eleven months. I said that if they didn’t arrange this via BUPA, I would. This seemed to galvanise them into some action.

I am coming to terms with the delay. I realise that it might not be wise to have the transplant too close to having radiotherapy which I know goes on working after it has been administered. I know that I must be in the best possible health ready for the transplant. However, why did they propose 6th December? My oncologist is so different; he would have organised the necessary treatments/appointments the day he saw the scan, but he has had to hand over my treatment to the Bone Marrow Transplant Team. They are nice well-meaning people but not used to moving between the NHS and private care to ensure the best outcomes – and obviously not good communicators.

We will weather the storm. There are worse ones still to come.

Wednesday, 11 November 2009

Mixed messages on Armistice Day

This morning’s walk was calm and windless but a glance above

Revealed dark clouds, small patches of blue and a straining sun -

Mixed messages for a day full of presentiment,

Alone in the wood save for just one walker and his dog.

The main path is narrow with occasional gates to bar the way;

Leading off are blind alleys into impenetrable trees,

Then the grassy plateau with swathes of blackening plants

And the odd ragwort and patch of gorse both sporting yellow.

Little sign of life today in all this stillness - but

Evidence of coppicing by the rangers holds promise

Of renewed growth in these woods in spring

Just then the single rabbit flashes his white tail while scuttling home.

Before the final hill where Raymond takes my hand to help me

We walk through a narrow path where brambles

Hold out their tentacles so near but not close enough

To touch us or prevent our passing.

Once atop the final hill the view spreads out before us

Against the brightening sky the dome of the Chapel Royal,

Relic of a Military Hospital of bygone days, and so

My thoughts turn from my own difficulties to remember

Those for whom today will not be difficult -

Those who will not see today at all.

Tuesday, 10 November 2009

A feeling of loss

I have made arrangements to have my DNA taken and stored this week as it will change if/when I have a transplant. I realise that I haven’t a hope of finding out who my father really was or possible half-siblings before the bone marrow transplant. There is just so much going on. Of all the events which have happened this year, that was the most challenging as it changed every perception I had about myself and has made me rethink all my relationships.

Perhaps when/if I emerge from the challenge I face in the bubble I can revisit this topic. I am a little ultra-sensitive at the moment and although I would have liked to contribute to the debate about donor conception, I think perhaps I must leave this to others who feel, perhaps rightly, that they are more knowledgeable. There have been so many areas in my life where I have found that a head-on approach is not always the best and in the end I have usually found alternative routes.

As a newcomer to the debate, in many ways I lack experience but what I do have because I learnt about my origins so late in life, is the experience of being on the other side of the debate. I don’t mean I thought donor conception was a good idea, but having been through the years of conceiving and bringing up children myself without knowledge of my origins, I was able to form my own ideas about adoption, IVF, abortion, eugenics without the subjectivity which comes from knowing about one’s own origins.

One of the greatest challenges of the truth about my conception is the feeling of loss. I am fortunate in having a husband and family of my own and I know I must look forward but we all come from somewhere. Most of us need to know about who we are and our history and I still feel that half of that has been lost. It is easy to dismiss this but when we hear about children adopted from one culture into another, of the latest schemes to manufacture embryos but we must start to think less about the sad lives of the couples who would love to have children, and more about the children themselves and their needs.

Sunday, 8 November 2009


So difficult to keep thoughts and feelings in check. A letter arrived from the hospital outlining my appointments to have lung, kidney and heart functions checked. Made me realise I’d better do some singing practice to improve my breath control which is pitiful at the moment. One one hand this is all progress but on the other it reminds me that none of this will happen unless I am in remission and only Wednesday will give me that news. In addition, unless I can get rid of the nasal infection and chronic rhinitis, all this will be in vain.

It is such a strange time to be thinking about impending isolation because, of course, life is going on for everyone around me too with important events in their lives. Anna’s friend, Stu, is having a very difficult operation on Tuesday. My heart goes out to him because he has had to suffer a lot in his young life and now this elective surgery could improve his life but always it takes courage to face an operation because you do it on your own. I am thinking about him and hoping so much that all goes well.

In the wider world despite all the Christmas decorations and displays in the shops, so many people at the moment are facing real problems with unemployment and house repossessions, yet still we have bankers getting bonuses and M.P.s complaining about changes to their privileged lives.

At Christmas time, which is now approaching, we think of peace yet sadly the coffins of soldiers are being flown back from Afghanistan. Just as the best of a generation was lost in World War I, we seem to be losing so many really wonderful young men. I wonder how many wars there would be if the people who declared them actually had to go to war themselves.

So in my safe, comfortable world I must prepare for the journey ahead. It’s not as if I haven’t faced difficulties before, but I must try my best to make things as easy for my family as possible. As I read about other cancer and lymphoma patients also facing difficult treatment and scan results, I know I am not alone and we must all support each other.

Saturday, 7 November 2009

Filling in the time

Tuesday was pentamidine day. It was also the day the central heating boiler broke down. Fortunately, the engineers arrived early, diagnosed the problem and fixed it so we set off for the hospital in good time. Unfortunately, it was raining and the roads near the hospital were gridlocked – parking is a very real problem, particularly when it’s wet. Ray dropped me off and spent the next half hour circling round to find a parking spot.

When I arrived, the pentamidine room was still occupied; they were running late as they had been held up by the pharmacy – probably one or two pharmacists spent hours traversing the city to find a way in. Eventually, it was my turn. If I could put the apparatus together myself I could go in; if not I would have to wait another 40 minutes for the fumes to clear so a nurse could enter the room.

The diagram was not the best but I managed to put it together and put the first drug in and connect it up. Unfortunately, as I have nasal congestion the whole thing was something of a farce. When I came to put the second drug in the apparatus had come apart and had to be cobbled together. I am always very shaky after the pentamidine so we had a delicious (!) lunch at the hospital to allow me time to recover.

Today brought news of the health checks I shall need before the transplant can go ahead. Although it looks daunting it somehow brings it all much closer.

Ray is desperately trying to fill the time before the PET scan results next Wednesday. He collected some topsoil from someone in the village and is redoing the flowerbeds by the front door – and he’s not a gardener. He’s even been seen sweeping up leaves ….

Thursday, 5 November 2009

Now is a waiting game

Now is a waiting game. I am waiting for the results of the PET scan but I am also waiting to see what will be done to eradicate my other health problems so that, if I am in remission, the bone marrow transplant can go ahead. When we were at the hospital on Monday Ray delivered letters to the Bone Marrow Transplant Consultant and my oncologist. Unfortunately my oncologist is on holiday this week but someone is needed to co-ordinate the ENT treatment.

So far I have been trying to do what I can with diet, nasal sprays etc. but a more powerful approach will be needed if I am to meet the deadline. I am also worried about the number of scans I have had already and will have this year.

Although physically I am quite weak, mentally I am feeling a little better. Constant chemo has a serious effect on my concentration, vocabulary and memory – both short and long term and all this can be quite frightening.

Last Friday I wasn’t feeling too good and I was lying on the sofa when the skeletons arrived. No, this isn’t the chemo talking. Two skeletons arrived for my daughter, Anna. She is a forensic archaeologist and needed them for teaching. A friend of hers runs a museum and these were left after a Red Cross Exhibit. The Red Cross no longer wanted them and Anna’s friend had had them sitting in his office for some months.

As I looked across I had this surreal vision of a skeleton sitting in the red leather armchair I usually use – very comfortable in front of the log fire so I hope this was not an omen. Anna was beside herself with delight. The other skeleton was in pieces but it seemed to have two right arms and wasn’t that an extra pelvis?

They could be a good burglar deterrent if we go away on holiday in the future.