Yesterday was my birthday

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

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

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

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

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

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

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

"Ifs" and "Buts"

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

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

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

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

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

The way forward

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

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

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

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

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

Walking with hope

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

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

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

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

A hectic time

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

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

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

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

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

Seeking answers

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

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

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

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

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

Which year?

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

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

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

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

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

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