Saturday, 27 February 2010

Day -3

Yesterday consisted largely of various bags of chemo - hours and hours of it! Unfortunately this led to a rather disturbed night constantly going to the loo but there were no bad reactions to the chemo, despite lots of warnings about shivering fits, sickness etc . so I am very grateful for that.

Today looks like more of the same before the chemo drugs change tomorrow preparatory to the transplant itself. I have been hoping to go downstairs when Jonathan and Josie come as after today I shall be too neutropoenic to cope with any possible infection but I've just hurt my back and I'm waiting to see if it will improve - so silly just bending down to pick up a slipper.

It hardly sounds like a day out to go downstairs to the cafeteria, but when the world is your room that's what it amounts to. Unfortunately, it is too wet to go outside and that is affecting Raymond's preparations for the photography course today. Normally, they visit a local medieval abbey, parts of which are covered but the weather forecast is for horrific winds in the Channel. So he may have to wait and do that element this afternoon.

I'm really looking forward to seeing Jonathan and Josie. It has been a great comfort knowing that they are not too far away and perhaps my back may get better before they come.

Friday, 26 February 2010

I wasn't going to write today

I wasn't going to write today. The chemo started at 12.30 and didn't finish until almost 9.30 but the side effects were fewer. Unfortunately the nurse in charge of it today was not really keeping an eye open for each drug finishing so she wasted just under two hours between 12.30 and 2.20 when it started off again.

The reason that made me a little jittery was because I really wanted it over before Jonathan came. In addition I hadn't slept properly the night before, partly it was me trying to see if hospital coffee at lunchtime was better than hospital tea, and partly because a man was in obvious distress next door. I had to get up and check to see if a nurse was with him. So I was planning to sleep a little better tonight.

Anyway Jonathan came in carrying three enormous bags full of equipment as tomorrow he is interviewing and filming some possible candidates for his programme. It was so relaxing seeing him and just chatting about this and that.

The important doctors did their rounds today. Dr Mike Potter is actually quite funny and says I should try to enjoy this weekend, perhaps going down the pub! I think he means from now on in I probably won't. The female doctors all love the quilt Josie made for me which is on my bed. They comment on my digital photoframe and all the touches which make this a little less clinical.

They are all very friendly and it makes the world of difference. Tomorrow more chemo but I hope that it won't take such a long time as today. Ray's course is going well and he seemed pleased that I didn't have the adverse reactions I suffered from yesterday's drugs which were actually quite different from today's chemo - so much variety and so much fun!

Thursday, 25 February 2010

Stronger and longer chemo

From today the chemotherapy will be stronger as new drugs are introduced and the whole process will take up more hours in the day. In about ten days' time I shall start to lose my hair.

In the meantime, apart from constant medical observations, time is really only broken up by meals. I was fortunate yesterday in that Raymond came to see me. He had company on the journey from home to London as someone from the village was also travelling at the same time. On his return he met Anna at Southampton Central as she had been teaching an evening class. I was glad to hear that as the station is soulless at night and there is always a long wait for the train to our village since there is only one per hour. She then cooked him a meal so I was specially glad about that.

I'm not sure how well he is coping with meals at the moment but as he is running a course over the next three days, he will be going out to lunch which will help. I have been planning with Anna the shopping I can order online so that she can make some meals for him.

Jonathan should be coming this evening so I am hoping I shall not be in too bad a way by the time he arrives. The problem is that I get so tired early in the evening and he can't get to me until about 8.30 but he is such a joy.

Wednesday, 24 February 2010


We are now into day -7. This is calculated as a countdown of days before the transplant. It makes it sound exciting but the days are really not like that at all. In fact, when I wrote to my mother today I said that I thought my days were about as exciting as hers.

Fortunately, I am less anaemic so that I haven't had to have any more blood transfusions today. In addition, although I reacted quite badly to the chemo on Monday, yesterday went far more smoothly. However, I am incredibly tired. A physiotherapist came to talk to me yesterday about exercise. I think my exercise for the day was reading through the exercises.

Jonathan came to see me yesterday and it was so lovely to see him. He fixed up the dvd player for me and showed me how to download some programmes. We went for a little walk around the wards. Today Ray has been able to come. He brought up all the extras that I need and although it took some time via 3 trains and a bus he seemed quite pleased about how the journey was managed.

I am finding it very difficult to concentrate at the moment whether it is TV or reading. I normally go through all the crosswords, codewords and su doku in the paper reasonably quickly but it is all rather slow at the moment. However, the programme is moving ahead. At times I want to escape as this is really serious stuff but I know I can't; there is no backing out now and so many people have wished me well. I just have to summon up the courage to cope as best I can.

Tuesday, 23 February 2010

Being in the bubble

Once again our journey to the Marsden saw sleet and flakes of snow. We were all nervous but trying not to show it. Once here, I had a choice of rooms and was pleased to see t.v. dvd and internet access. Yesterday was very tiring though. I had chemotherapy in the evening and one of the drugs made me feel very weird. I couldn't tell whether I was hot or cold. I became very agitated and couldn't concentrate on anything. All I wanted to do was whip out the line and walk around.

Ray and Anna left once Jonathan and Josie came. I felt awful as I knew they had travelled by public transport but they were so sweet and realised I wasn't well. Apparently my blood count has been low - hence the tiredness so I have had two blood transfusions each lasting three hours.

Jonathan has been filming children doing the junior version of the race for life i.e. a promotional video for the charity as the actual race takes place in July. He made me laugh as he hasn't done any filming or interviewing children before and he apparently asked some difficult questions which Josie had to translate.

I've had some really lovely messages from people wishing me well. I know I am in the best place as they are all very friendly and competent but I also know this regime is the most difficult I have ever encountered.

Monday, 22 February 2010

In the bubble




Sunday, 21 February 2010

I want this to go ahead now

Yesterday and today have been rather overwhelming. There were mountains of clothes, wraps etc in two rooms some of which I shall take tomorrow and much I will leave here. Everything has to be scrupulously clean but, of course, until I get there I shall not know whether I shall need nightwear or modified daywear. I felt it better to have somewhere where Ray could look through when I ring up and ask for a particular item. As I shall lose my hair it was necessary to unearth all the caps and scarves I used before when I had chemotherapy.

Of course, at 10.30 a.m. tomorrow I could be told that there is no room available and so the agony will be prolonged. At least I have been to see my mother today to let her know that I should be going into the Marsden very soon. I was glad Anna was with me as that helped to keep the atmosphere a little lighter.

In addition, Ray is running a course this coming weekend so there were some preparations to make to ensure everything runs smoothly. I am sure that it will help take his mind off things. He needs the distractions at the moment so the fact that there is work to do on the boat is not such a bad thing as he can set his mind to that as well. I am hoping that if he goes to France for that purpose, he will go while I am in hospital because I shall be as safe there as it is possible to be in the circumstances.

My mind is like a butterfly at the moment. I keep of thinking of things I should have done and phone calls I could have made but in the end there is a limit and I have reached it. I am tired; I want this to go ahead now whatever the dangers and I hope there will be no more delays. I am so grateful for all the support I have received and all we can do now – and the best thing to do – is pray.

Friday, 19 February 2010

A busy day

I hate to think what would have happened if Ray and I had caved in and gone to the General Hospital. There is an outbreak of the winter sickness virus there which has already closed 5 wards and the neighbouring hospital is also affected. What does it say about their hygiene?

These days are going to be quite busy. As I’m feeling a little better, we did a report for Ray’s solicitor regarding one of his medical assessments. You really have to read through these with a fine toothcomb. It’s too important not to take the time to get things absolutely right because later on you can get bitter and twisted. It’s bad enough what happens when you enter any litigation procedure but if you haven’t taken a little of trouble yourself to check the professionals you have only yourself to blame.

The next thing was a visit from a Notary to witness my signature on an Affidavit which I was asked to do for a plaintiff bringing a case in British Columbia about ending the anonymity of donor parents. Whilst I was happy to help with the drafting, I was a little surprised that the Canadian solicitor expected me to find a notary and print off the Affidavit! I gently refused and they contacted one themselves, I sent the Affidavit as an attachment and the British solicitor printed it out. I have found that as I get older I get firmer.

The British solicitor’s reaction to me was that he was rather surprised at my appearance. I had insisted that anyone who came here had to be free from infection and explained about my admission to hospital next week. As Anna opened the door I think he thought she was the granddaughter, I was her mother and that a grandmother was lurking away somewhere very frail and ill. At least we could have a laugh about it but I’m not taking any risks at this stage. Anna is doing some shopping for me this afternoon as I am not meeting any more of the general public at this stage.

I am going through the practicalities of leaving everything in order and doing mountains of washing so that everything is in pristine condition to take to hospital. I’ve never been a hausfrau but who knows with a new DNA I might become one.

Thursday, 18 February 2010

Looking to the future

After three days of pathetic in-fighting a chastened district nurse came to see me and flushed my hickman line. Ray had to go to the surgery and insist either the nurses did it or they found a doctor who could. This flushed them out! The whole point of this was not only to get the line checked and cleaned but to ensure that this procedure could be carried out by someone at the local surgery when I come out of hospital.

The literature about central lines cheerfully says how some people like to do this themselves, well perhaps they do but it’s easy to make an error and in fact the nurse could only flush through two out of three lumens and the third line will have to be cleared by the Marsden when I go in on Monday. The hospital have sent me a reassuring email to let me know that they will do that. Part of the reason for having a nurse do the procedure is also to check for early signs of infection and to be able to discuss any other aspects of problems which could be cleared up if caught early. So after lots of apologies from the district nurse and my own GP a relationship has been set up and we hope this will be helpful.

Those three days caused me a lot of stress. I am treading a fine line between keeping calm and toppling over the edge. I don’t want these days before going into hospital to be a series of crises and emotional outpourings; it’s so unnecessary. I felt so much better physically and mentally once it had been sorted but once again it’s thanks to Ray’s persistence and refusal to allow me to be taken to the General Hospital where I might pick up an infection at this late stage which could prejudice the whole transplant.

Whilst we have not received the support we could have expected from medical personnel, we have had so much from other people: cards, messages and just kind words from people we encounter. I suppose normal people can see how they or their families are affected by serious illness and the empathy is there. I am glad that Ray is also getting the support he needs because at the moment he is carrying me.

Today my GP took samples of my DNA which I shall store as after the bone marrow transplant my DNA will change. I explained that maybe sometime in the future, it may be possible to find some half-siblings or perhaps even further in the future, scientific advances may mean that females will be able to trace their paternal ethnicity. Even if it is too late for me this could benefit my children. I have to hope that perhaps at some point the law will be changed so that no other people are born who have been deliberately separated from their genetic heritage with all the problems that this brings.

Here’s looking to the future!

Wednesday, 17 February 2010

DIY Medicine

The Practice and District Nurses are playing hard to get. They really don’t want to be involved in flushing this central line and I really don’t want to go to the General Hospital with its multiplicity of infections before I am admitted. Ray is at the surgery as I write this trying to get some sense out of them. We hear all about the wonders of the NHS and Macmillan Nurses but no one is ever available when you need them. Their dispute has been going on for three days. First a district nurse may do it, then it’s a doctor, now we’re back to the district nurse provided of course we can get the heparin from the pharmacy. Do it yourself medicine.

However, the word from the Marsden – and they’ve tried contacting the GP surgery too – is that Monday is definite for admission. It is going to be a busy time before then. Ray has a course at the end of next week so I must get out all the props he is going to need. In addition, I am finalising the amendments to the Affidavit which the Canadian lawyers are organizing regarding the case another donor offspring is bringing in British Columbia regarding the denial of access to our genetic records.

I hope they are going to be successful but they are up against a massive wall of secrecy and some very powerful and influential groups. When I think of my efforts and how they have been blocked at every turn. I am convinced that even though many of the paper records may well have been destroyed, some remain on microfiche etc. or may be buried in medical/university libraries. I understand that some of this data has been used in doctoral research so it must exist but this is anecdotal evidence however accurate.

The Canadian lawyers are now working against the clock because I will be hooked up to the chemo drips from next week and my ability to think and concentrate could be affected. If there is some success in other areas of the world, inevitably it will reach these shores and the authorities will be shamed into acknowledging the right of all people not to have their genetic heritage deliberately taken from them.

Although I am getting a dongle today or tomorrow and hope to get connected to the internet as soon as possible, inevitably there will be some delay. There will be a break in transmission but when I am allowed to get out of bed I hope to continue with my blog.

Monday, 15 February 2010

The pain is manageable

Today, for the first time since Thursday, the pain is less overwhelming and I was able to sleep. The pain is manageable now and I will feel more able to do things other than just sit in a chair. Passivity has never been my ideal occupation.

We have had so many really supportive messages from friends and relatives and it does make an enormous difference. Anna says I look as if the whole world is on my shoulders at the moment as I’m still trying to anticipate all that must be done before next week. She and Jonathan say I should speak more about the pain but that gets very boring and you just have to try to think of other things to take your mind off it.

The main difficulty now has been in trying to organize a nurse to flush through the Hickman Line on Thursday or Friday. The Practice Nurses at the GP surgery don’t seem to know how to do it but there is apparently one district nurse who is familiar with the procedure and she is back from leave tomorrow. I really didn’t think it appropriate to have to journey to London just to have that done. I also have another motive. Once I am out of hospital I certainly don’t want to be landed with having to do it myself, or worse still, to have to go to the Southampton General Hospital to get it cleaned. Keeping free from infection is going to be a priority.

I have decided that tomorrow and Wednesday should be the last days I really venture out as I don’t want to catch any infections before my hospital admission. I am feeling very tired at the moment so it is going to take two days to do what really should be done in one. Pathetic!

I have had an interesting email from a legal firm based in Canada. A client is bringing a case about ending the secrecy of donor conception. They saw my story in The Daily Telegraph and want me to make an affidavit. The reason for my going public about my situation was to highlight the terrible problems that are created for the donor offspring whilst the sufferings of the infertile parents are alleviated. So although it is not very convenient, probably my story could carry a lot of weight. I can’t really refuse when I think about what my donor is about to do for me in Germany. Let’s hope that out of all this, there are some changes in the law. If it changes in British Columbia, who knows this may spread in time across the world and no one else will deliberately be deprived of their genetic and cultural heritage.

Sunday, 14 February 2010

All I can do is thank her

Today I have an important letter to write – the most important I have ever written.

But my name and address won’t appear anywhere

Neither will the name of the person to whom I am writing.

I have written many important letters in the past so I should know how to do it

The earliest I remember were to aunts and uncles with thanks for presents

Later there were job applications, letters to lawyers and bank managers

All important in their own way and each preparing me for the letter I write today.

Today I have an important letter to write – the most important I have ever written.

I must write in English then ask someone to translate it into German for my reader.

I must hope that each nuance, each expression is properly reflected

Because my reader must understand exactly how I feel.

But exactly how do I really feel about an unknown person who is giving me the chance of life?

Today I have an important letter to write – the most important I have ever written

In a few word I must explain my gratitude no matter what may happen in the future.

I know I may not live (against infection I will have no chance for many, many months

It may not completely work and lymphoma may return

I may have graft versus host disease) but

What she has given to us for the past nine months is – hope

Today I have an important letter to write – the most important I have ever written

Since knowing of her existence and potential gift my spirits have been lifted

We have had a chance to love and laugh with hopes for the future.

Over the next two weeks we shall both be preparing for day zero

The day when the cells are taken from her and given to me

Today I have an important letter to write – to someone I do not know

Who is going to suffer discomfort and give something of her basic self

To give me a chance of life. She owes me nothing and will receive no recompense

There will be no public recognition for her gift. She gives it freely

She cannot begin to know what she is doing for me – for us

All I can do is thank her.

Saturday, 13 February 2010

Pre-transplant procedures

We came back last evening from the Royal Marsden where many of the important pre-transplant procedures were carried out. On Wednesday I had a PET scan after which about 9 vials of blood were taken for testing. I had an ECG and chest X-ray to confirm I was fit enough for the central line insertion after before going to talk to a doctor. By this time I was starving – nil by mouth because of the scan – but staff brought sandwiches and hot drinks to the doctor’s office for Ray and me. I was totally exhausted with all the procedures plus lack of food and drink but fortunately we did not have to drive back home. Staying at Jonathan’s meant only a short journey and everything was done for us and they were both so welcoming.

The following day, Thursday, we had to reach the Marsden by 8.30 a.m. Again nil by mouth but this time I had to prepare for the central line insertion and the bone marrow aspiration. One of the theatres was not in use so we had a long wait and I was getting so thirsty. At first I wasn’t sure whether I would have to have another general anaesthetic but it was decided I should have a couple of locals and sedation. I was very relieved as it takes me so long to get over a general anaesthetic and I can’t afford to be too unwell in the days leading up to hospital admission.

As I wasn’t taken to theatre until after 2.00 p.m. Ray had my lunch but once I was out of theatre I had the usual problem with my low blood pressure so I didn’t get back to my room for a while. Fortunately, they had an on-call meals service and my really nice meals officer, Darius, promised me he could do me an omelette in 8 minutes. I don’t know how much reviving tea I drank but I needed every drop. To be honest this procedure of the central line insertion was the one I had been dreading most. Then I was taken by wheelchair to have an X-ray to ensure the line was in the correct place. The corridors were so clean and shining; it was amazing.

The other amazing aspect which I had also noticed the day before, was that the X-ray waiting room was empty and contained only 6 chairs. I went straight in, no waiting. Can you ever imagine that happening in Southampton? Soon it was time for dinner and I had ordered this earlier, not really thinking I would still be there. I was able to leave at about 7.30 having received reassurance that the line was inserted correctly and we were back at Jonathan’s by 8.00 p.m.

The following day the line was flushed and checked and we were able to come back home. Everyone was very friendly, busy and efficient so I have much more confidence now. My platelet count and blood pressure are still low and I won’t be able to do half of the things I should before I go in but perhaps I am not going to be able to wrap up my life nicely and tidily – perhaps my life will go on as untidily as everyone else’s.

Tuesday, 9 February 2010

Grit your teeth

The ghastly stitches have now gone and so have the nose plugs. When the consultant said, “Grit your teeth,” I knew it was not going to be easy. Then he proceeded to hoover my nose which is an unusual and fairly unpleasant experience. Ray had been invited into the consulting room and although I was behind a screen, I think it all made him feel very queasy.

However, one of the things I learned was that the operation had taken two and a half hours which explains why I felt so ill after the anaesthetic. They took pictures of each of the sinuses as they were opened up, not something you want to put on your wall but at least I could then see the necessity for the procedure.

I do have to follow up the operation with lots of daily saline sinus washes which is a bore but I cannot afford to waste all the good done by the operation by not following it all up properly to keep infection at bay. That is going to be so important over the next few months.

What I have felt is that when seeing this consultant, not only are we treated properly and seen on time, but he has all along looked at the bigger picture of what I am going on to, i.e. the bone marrow transplant. Everything has been done in terms of action and timing with that in mind. It has given me more confidence especially after some less than perfect treatment before.

Starsky, too, is picking up and seems to be getting over his anaesthetic. He is eating more now and Anna will be home soon to look after him which is a relief. I am now planning for the days ahead and have received a schedule of procedures from the Royal Marsden. I am not looking forward to the insertion of the central line or the removal of a bone marrow core on Thursday. I feel I have had enough pain for this week.

However, at least now I do have a schedule to look at. The Journey into the Bubble has been long with many hurdles along the way but we could be getting there.

Monday, 8 February 2010

Staying in and going out

The stitches inside my nose come out later today along with the two trailing stitch tails across my nose. When I look a little more human again maybe I shall feel a little more upbeat. I still feel very sick but I am making myself eat as I need to keep up my energy. Last week I didn’t feel like tackling anything whereas today there is a lot more I feel I can do although I don’t intend going out until tomorrow!

Tomorrow also will take us out walking again. These times in the countryside, just the two of us, away from telephones and business are wonderful. Anna advised us to make a pact not to talk about business or my health or anything of that nature, but just to concentrate on positive things. That gives us a part of the day which nothing and nobody can destroy. These times together are very valuable as we are not looking forward to the weeks we are going to spend apart.

Whatever happens I am always finding something in this situation to worry about; I just wish I could be calm. Now I worry about the sickness; is it because of the radiotherapy on my intestines (I know sickness can last for some time after completion) or hasn’t the radiotherapy worked? In which case, has the lymphoma returned which might prevent my transplant going ahead? It would be wonderful to be objective and rational about all this but there are too many variables.

All this self-analysis I would have laughed at a few years ago, but now I know that my health depends not just on good medical treatment from the professionals, but from keeping a close watch on everything that happens myself. However, self-analysis can easily tip over into self obsession so I have to be aware of all the concerns of other members of my family. Today Anna sees someone about some possible work in the future and Jonathan is now entering his second week on his new programme. Similarly, there are other people who need my thoughts at the moment because of bereavement and severe illness so I must turn outward once again.

Once the stitches come out today, I can stop being confined to home and go out again. Once I can go out and mix with other people I shall start to feel more involved in their lives again and about time too!

Sunday, 7 February 2010

Lifting myself up

Ray has gone fishing today. He is sometimes a little worried about leaving me on my own, particularly if Anna isn’t here. However, I am all right, just very lethargic and I do so much want him to have some time away from home in the countryside doing something he loves.

Twice a day now we are having to give the rabbit his antibiotic but he is just a little livelier although not really steady on his feet. Perhaps he is playing for sympathy. Normally he scampers around the conservatory but now he spends most of his time in his hutch. I know the feeling. I haven’t really wanted to go out much with the tail ends of the stitches stretched up my nose. It is not a good look but going out does offer some stimulus

Tomorrow evening the stitches are being removed and hopefully the rash from the plasters will have calmed down. I am desperately hoping that this will re-energise me as there is so much to be done. This week brings some events at the Marsden which are crucial to the bone marrow transplant and I know I have got to become fitter physically and regain some of my usual emotional energy. Having energy on a personal level is something I have always taken for granted and that is worse than all the physical symptoms. Hopefully when I stop feeling sick all the time this will help.

The next few days are really important and I must lift myself up by my bootlaces. One of my inspirations is my mother who at 96 gets up every day and dresses carefully, maintaining her colour co-ordination. This is not vanity, but she knows quite well what self-respect and normality do for one’s morale. Others have their own problems too. So many people I know are going through difficult times at the moment with the recession. We have several friends who have businesses of long standing who are now having to take on other jobs to survive. These are not people who have been reckless but nevertheless they have been caught out because people are just not spending money. Ray and I remember the recession in the 1990s; it’s different this time but still just as difficult. We came through that and, as a result, are stronger so we must summon all our strength now for a different battle – a battle for life itself.

Saturday, 6 February 2010

Keeping spirits up

There’s a difficult week ahead and I’m feeling quite fragile with the side effects of the drugs post surgery. Both the rabbit and I are needing a little TLC after the general anaesthetic.

However, no matter how I feel there are good wishes coming through every day. Ray meets people in the village who ask after me and I received some beautiful flowers from a lovely lady who was on one of Ray’s courses. She and her husband had wanted to take us out to dinner but as her little daughter had been ill, I had to refuse. I have to keep to a very tight schedule now and can’t afford to be ill. Fortunately, she understood as I really don’t want to offend anyone.

Ray and I take pleasure in the fact that we can still run the business and we meet such great people. We even have a really good bank manager who seems to understand what Ray has been through with the accident and now caring for me. Mostly I have not only been able to take care of myself but play an active role in the business. However, now other people are having to step in. Actually since an important part of the course is the business element as well as the photography, Ray’s students can see that we can cope and can pass on some good advice since all people who run small businesses have to cope with difficulties in their private lives at some point.

What I am missing is singing. I sing, always have, and it’s given me such pleasure. I started out as a child in the church choir, took part as a soloist in operas at school, then later on as an adult in concerts, shows and operas. I gained my Licentiate in Music but decided not to pursue singing as a career partly because I think you have to be very single-minded and also more talented. However, I have never lost the thrill of floating a soprano sound over an orchestra even though now I am once more back to the church choir.

During both bouts of chemo in 2008 and 2009 my voice was affected and my larynx has been affected once again by my sinus problems. But the voice does come back. At first it takes a lot of work to produce the sound across the whole register and breath control is difficult. Then comes a day when the voice just floats out again. My son has a good baritone voice so perhaps my father, whoever he was, could sing. I am told he was musical and singing depends on one’s physiology which can be inherited as well as musicality. But to sing well requires spirit and joy to be alive. That spirit is difficult to suppress even during a drug regime so hopefully I shall sing again.

Friday, 5 February 2010

The best odds

When my daughter was at Exeter University she bought a little rabbit and when she moved to Cranfield University he went too. When she came back home to have a flat in our house in order to do her PhD, Starsky came to live here as well. He has a hutch in the utility room but the hutch is never locked so he has full run of the space and in finer weather moves outside during the day in his outside run. Sometimes he likes to come into the rest of the house and make himself comfortable; he has always had comfort as a strong priority.

On Wednesday though, he seemed off his food and morose. He had spent most of the day underneath his hutch, not something he has done before. But our daughter was in Amsterdam so we had to take action. Yesterday Ray took him to the vet who thinks the problem may lie with his teeth. Today Starsky is going to have a general anaesthetic so the vet can examine him properly and, if necessary, file his teeth.

Animals are so vulnerable and ultimately dependent on us so it was difficult seeing him being taken off for his operation. Most of us like to be independent and it is difficult to put your trust into the hands of professionals however expert or well-meaning. Our instincts for self-preservation are very strong.

Having choices about whom to trust is therefore very important but ultimately we need our wits about us. The old days of just trusting the professionals blindly have long gone. Many years ago there was a BBC programme “Your Life in Their Hands” which was meant to boost patient confidence. I think nowadays this title would be seen as slightly ironical. There are still marvellous doctors and vets and patients must still be prepared to gamble a little in order to achieve the best result but we would all like the odds to be the best we can get.

Wednesday, 3 February 2010

Another step

Every day now brings something which adds to my journey. Today Ray and I had our swine flu vaccinations. I know at the moment swine flu hasn’t materialised into the epidemic that the professionals thought might happen, but I was advised by the Marsden that we should have it done.

Since my blood pressure is always low, I spent yesterday in bed after the anaesthetic as I felt quite dizzy. This is a very abnormal occurrence for me as I get up regardless of how I feel but falling over, especially downstairs, might not be a good thing at the moment. I am trying to keep as safe and germ-free as I can at the moment so that nothing is delayed.

Ray has been so good looking after me. When we were younger I could just never envisage being ill at this age. I knew I wasn’t as strong as my mother but I could never have imagined being overtaken with this. There isn’t much time now before I go into hospital so we know we must make the most of every day.

Whilst I was at the doctor’s surgery I made an appointment to see my GP in order to have my DNA taken. The receptionist looked totally bewildered and I tried to explain that my DNA was about to change because of the transplant and my doctor (knowing about my donor conception) was aware as to why I would want my original DNA recorded.

Maybe at some time in the future if I get through this, there may be an opportunity to see if I match a potential half-sibling or there may be advances which enable females to find out their paternal DNA. Whilst I think we all wonder at the marvels of modern science, there is a real gap in the teaching of ethics and responsibilities in the development of science and the effects of scientific progress on all human beings whether living now or in the future.

Tuesday, 2 February 2010

Picking up speed

In 2006 Ray and I decided to join the health insurance, BUPA. Thank goodness we did. Although some people have said to me that it has made no difference to people they knew, for me the converse is true. I have had some excellent NHS treatment, notably from my GP surgery, but I have also had some terrible experiences.

Initially being able to call on BUPA to authorise seeing a consultant led to my diagnosis of lymphoma earlier than otherwise. Secondly, I was able to have chemotherapy at home and I knew I would have access to drugs not always available on the NHS. Of course this isn’t fair; the drugs should be available to all. However, people have different priorities and we made a decision about making insurance subscriptions which meant doing without things in other areas of our lives but I am aware that some people have no choice at all.

The crunch came when I needed ENT treatment. This had been highlighted by the bone marrow team in Southampton but not acted upon and the delays meant that if I had gone down the NHS route I would only just have seen a consultant in the last few days. This would have meant postponement of my bone marrow transplant and the danger in this is that mantle cell lymphoma grows back so that the transplant could have been doomed from the outset.

As it is, BUPA authorised me to see the consultant, have an appropriate scan, pre-assessment tests and my sinus operation yesterday. This just fits into the schedule for the transplant and I am so grateful that everyone pulled together to enable this to be done. I knew already that the consultant was very experienced and capable but successful outcomes also depend very much upon the hospitals and their staff as I know to my cost, having had two previous bouts of MRSA. I was impressed by the pre-operative tests which were very thorough. In hospital I was very well looked after and staff asked all the right questions to prevent anything going wrong. They all seemed aware about the transplant ahead and I felt buoyed by their quiet encouragement.

So I’m home and another hurdle has been jumped. The journey is picking up speed at last which is positive but also daunting.