Walking to fitness

In the past few days I’ve received some lovely emails from friends and relatives, some of whom are a long way away. They not only lift my spirits but because of my relative confinement, bring the larger world to me. I love hearing their news and what is going on in their lives and those of their families.

Yesterday and today are rather colder and miserable but we managed to get out in the afternoon to visit a couple of garden centres. We need to buy some deer-proof plants for the back garden. The trouble is the deer change their habits and can suddenly decide they like to eat something which they’ve never tried before such as tulips.

Today we found a flat piece of land in the Royal Victoria Country Park for me to walk around. It includes the cricket field so absolutely no hills to defeat me. We’re going to try this walk first and gradually build up my strength so that we can go back to walking in West Wood but there the terrain is more challenging. I feel quite abnormally proud of my circuit and that we have really started a new campaign. Once we have built up my fitness it can become more challenging so that it is good for Raymond too, like it was before. However, I still believe that all the walking we did in the months prior to the transplant really helped to build up my overall strength so it is worth doing.

Afternoon tea

It was really lovely having my mother come over to us yesterday. She’d obviously been looking forward to it but needed a lot of reassurance that I was making progress even though there was a long haul ahead of us. I explained that initially I was doing well but graft versus host disease might emerge after six months, that my immunity should return after twelve months but we wouldn’t really know if it had been effective against the lymphoma for about two years. It’s a long time but there is no alternative.

It was good to reunite her with her jewellery, most of which Anna had taken for safekeeping while she was in hospital. She was delighted with her new cross and a new wrap which I had given her to replace the articles which went missing in hospital. We are hoping that if she goes in again, she will leave her jewellery behind.

We enjoyed having afternoon tea with her and I sat immediately opposite her. Although she is completely deaf she followed my conversation completely and I was scarcely raising my voice. She is used to my voice and can lip read me very well. She was fascinated by Anna’s recent exploits in the crime scene world and wanted to know all about how Anna went about her tasks. It was good to see them together as they get on so well.

This afternoon we have to take Anna together with some skeletons to a local Sixth Form College. Anna is teaching an evening class there today and couldn't take them on the train!

A new interest

I’m seeing my mother today. They have been so many false dawns what with her cold and chest infections at the home. I haven’t seen her for weeks so we are all looking forward to it.

Ray’s course went well over the weekend and we are now preparing for May. We have two people flying in from Slovakia so I hope the volcano will be behaving itself. We have a full course so will have to search for accommodation a little harder than usual.

Yesterday brought a trip to the Marsden Hospital. It all went well and the results of blood tests are still encouraging. This means I can begin to decrease the dosage of some of the very many medicines I take. It also means that soon I may not have to go to the hospital every week. Up till now it has been a safety net as when you leave the cocoon of hospital after several weeks, it does provide the protection you need. However, soon I must begin to stand on my own two feet a little more if my recovery is to progress.

In the meantime, I must find something to do. I have finished my family recipe book which is now at the binders but I still can’t read so there is no way I can resume my PhD studies for some time, even privately with my own reading. This is providing me with something of a dilemma. At the moment gardening is out because of the fungal infection risk and my walking ability is still limited. A new interest is definitely needed.

Not feeling good

I’m not feeling so good today. After quite a significant improvement, a setback is a bit of a blow.

I learnt on the internet that a number of donor conceived adults were meeting this weekend in London. I would have liked to have attended but at the moment it is impossible. I would so much have liked to meet other people like myself and to learn how they have reacted to the situation.

I read recently about another such meeting where out of the 19 people present, 17 had experienced the divorce of the parents. I am not surprised. Regardless of whether the whole thing is kept secret from the child or society at large, there is a real imbalance in the family. I wonder often how my parents would have coped had my father lived longer. I don’t doubt the strength of their marriage but I do doubt whether the fiction would have been maintained into adulthood that my father was genetically related to me.

Since I have an older brother who was adopted at the age of six just after I was born, the family situation was fraught with problems to say the least. I haven’t had much to do with him over the last few years but I must say that I feel much more sympathy with his situation now. I have no idea how much he was told about his own situation. My parents were very keen to have a ready-made family but I don’t think they thought it through from our point of view.

I’m only glad I didn’t have that problem myself.

Getting everything ready

Ray’s course is back on track. We have found a potential groom and another model so the weekend should go ahead well. One course participant is still in Egypt and will have to transfer to May but otherwise everyone else’s travel arrangements seem to be OK.

Today is usually spent in getting everything ready, the studio and checking all the arrangements are in place, so no trip out today unfortunately. I had hoped to go to the bookbinder’s as I have completed Volume II of the Davenport Family Recipes. I have found it something I could do when I couldn’t concentrate on anything else. I made the first book for the family members three years ago and they seemed to like it and urged me to do another one, so I have done this in the last three weeks since coming out of hospital.

So the situation is I can write (a little) but not read. Such is concentration. When I wake in the night it is a blow not being able to read to send myself off to sleep but perhaps it will come eventually. I didn’t think I’d lose all the fluid around my face, waist and ankles but that has melted away, thank goodness.

I keep thinking about my bone marrow donor. I must write another letter as she cannot possibly know how grateful I am to her. It will be two years before we can lift anonymity and I hope that one day I shall meet her and thank her in person. In the meantime, I must concentrate on getting better.

Impatience

Yesterday I went to the hospital. I have joined the Monday post transplant clinic run by Dr. Mike Potter, the head honcho for transplants at the Marsden. It was very busy but I saw my usual doctor who seemed pleased with my progress to date. Just as we were leaving I heard my name being called and it was Dr Mike Potter. He seemed delighted with the way things were going. I was amazed that a) he remembered my name, b) he recognized me from the back, c) he knew all about my recent medical tests and d) he was so thrilled and wanted to talk to me.

It now makes it all the poorer that I constantly moan about not sleeping and being very tired. I feel like a fraud. I know that I am doing better than expected bearing in mind it was an unrelated donor where there is more risk and more complications. However, I am impatient and can see no reason why my progress cannot be quicker. I want to look well, I want my hair to grow and I want to have some energy. There, I’ve said it!

Having refurbished the AMG, Ray is now turning his attention to the house and garden. We have ordered our chairs but they will take about five weeks as they are hand dyed. To celebrate we bought a new rug and a couple of new wall lights. We managed to get some really good light bulbs so we can see what we are reading. So many of the energy saving ones are so dim.

Raymond has a course this weekend and so far everything is in hand but one of the participants is flying in so perhaps he won’t make it. We have another snag, no groom for Saturday. If anyone knows of a young man with a suit who will be photographed on Saturday afternoon ……….

Refurbishment

I’m still incredibly tired as if my shoes were filled with lead. However, life goes on. I managed to find a replacement cross for my mother. I’m not sure if she knows when or how it disappeared in hospital but it was a present for her ninetieth birthday so I’m sure she is missing it. And it is exactly the same as the original.

The roadworks which have been plaguing us for weeks have now moved further down the road. Not only is it quiet but we don’t have to negotiate a lorry every time we want to get out of our gateway. For two weeks our bins weren’t collected because of the machinery so we had to organize a special collection.

With no planes in the skies, everywhere is that much quieter than usual, although my heart goes out to people who were planning special trips and either can’t go or are having difficulties getting back home.

As I haven’t seen my mother for some weeks, I am trying to organize a visit for Sunday. I have to ensure first of all that she is well enough and secondly that there is no infection at St Elizabeth’s which would be dangerous for me. We plan to have a tea and then ensure she has the safe return of all her jewellery.

This afternoon Raymond is planning a trip – nothing that involves extensive walking for me but a visit to buy some much-needed new chairs. Our old leather Georgian chairs are really showing signs of wear. We plan to get them refurbished for other parts of the house as we are not great at throwing things away. Reminds me of myself, refurbished with a new DNA. I just wish I knew where the old one came from.

Low in energy

Today meant a journey to the Royal Marsden. We can do the trip quite quickly now but there is usually a wait for the pharmacy and today as I had been so tired there was even a scare I might need a blood transfusion but all was well. The doctor seems very pleased that the remaining tests on the bone marrow have come through and show a clear sign that the donor cells are present in blood and bone marrow with no shadow (chimera) of my old cells.

Apparently now I can stop going to the Thursday clinic and now join the Monday more general clinic. This promises to be even busier so I’m hoping there won’t be too much waiting around. This starts this Monday. I also enquired about the tablets I am on. It looks as if the anti-rejection ones will continue for another three weeks then gradually I shall be weaned off these. Most of the others will remain until six months after the transplant.

I should be feeling quite pleased at the results but I felt incredibly weak and tired today. I just woke up like that, completely lacking in energy. Hopefully tomorrow will be a better day.

Good experience

Avid readers of the Welwyn Hatfield Times will have been following a murder story with keen interest. They will already know that forensic archaeologists have been searching a garden for a body and that someone has been charged with murder. Perhaps they will have seen a small slight figure wielding a mattock on the first day. On the second when the senior forensic archaeologist left for a conference in America, they will have seen the younger forensic archaeologist in charge with two burly policemen now helping with the digging. They will have seen pictures of the forensic archaeologists in their fetching white suits and wellingtons.

Those of you who have not had the luck to read this august publication will be wondering who the younger forensic archaeologist was. Those of you who picked up the hint the other day will know it was Anna. She hasn’t been on a crime scene for some months so this was good experience. Whilst we cannot begin to understand how she can cope with all this, she takes it in her stride and, of course, it all adds verisimilitude to her teaching.

As I look around me at my books and files, I cannot help wondering about my own teaching. It seems such a slow, tortuous route back to health, should I just get rid of all my text books on the basis that I will never teach again? Of course, I never planned to return to a school, but I might teach privately. It is such a final step to take and I’m not sure I can write it all off yet.

We are constantly amazed at our offspring, what they have achieved and are likely to achieve. It is difficult to look into the future and whatever it holds; it is better to keep an open mind.

Starting exercise

The internet is playing up. We had a new router which was supposed to boost the signal and occasionally it works. So you have to keep going to the computer just to catch the odd five minutes when all is well. It looks like Ray will have to go back to BT and see if he can get a better deal than with TalkTalk.

I’m exhausted, but in a good way. I’ve walked, climbed a stile and seen parts of the River Itchen I haven’t seen for years. Raymond joined a fishing association for servicemen and it entitles him to fish on some of the most beautiful parts of the river. I’ve taken a few photographs today but we only saw a couple of beats this afternoon. Hopefully we shall visit some more during the coming days.

I think it will take me about a year to build up my immunity and at the moment I have a very congested nose which is really bothering me. I have to report every rash, spot, ache and runny nose or cough on Thursday so they can nip it all in the bud before it develops into something more sinister so it makes one very introspective.

I am convinced that just as the walking built up my strength before the transplant, so some exercise will be good now. I just feel like I’ve gone backwards so far in my fitness because of the time in hospital. It’s going to take weeks, if not months to build up some strength again.

I’m going to take advantage of the internet working momentarily in order to post this before it dies on me.

Well into spring

Good news! My mother is out of hospital. She has a little problem with shortness of breath and needs someone with her as she walks around but I am sure that now she is back home these problems will disappear quite quickly.

I am hoping that as soon as my health becomes a little more reliable, we can have her over here for tea. Unfortunately, I still vary from day to day. I had a good day yesterday which coincided with Jonathan’s visit. He cooked several dishes for us so we have a freezer full of meals which will help Raymond considerably when he is tired or busy.

They have both joined a fishing association open to members or retired members of the Services which gives them access to the chalk rivers of the Itchen and Meon, whose stretches are otherwise prohibited to the general public. They went on a tour of the beats today and were significantly impressed. It is cheaper although there is less chance of catching fish than on a private lake but the locations are wonderful.

Anna telephoned early today to say that she had been called to a crime scene in Hatfield. She didn’t have all her equipment as she was away from home but seems excited. She has to get a certain number of crime scenes under her belt so that she can act in her own right rather than as an assistant to Karl. The Crime Scene Officer was actually on the same course as Anna at Cranfield so that should stand her in good stead.

The weather has been really sunny and quite warm. We really are well into spring now so I hope my health will gradually become more reliable.

Carried on someone's shoulders

A few years ago one Christmas I produced a book of family recipes just for members of our family. All my mother’s family can and do cook. No family gathering was complete without a discussion of the food and various recipes. The men were just as good as the women; it was a family passion.

Although Anna does not yet do as much cooking as the rest of us, when she does she is very good. Raymond joined in early on and although many men of his generation do not cook, he took to it very well and consequently enjoys and appreciates good cooking far more than he used to. He is also more critical of poor meals when we go out than years ago.

Jonathan has a real skill and verve and he is compiling a book of recipes of his own and those of his friends. He was showing me this weekend and this provoked my memory of the cookery book I made as he says how much he uses it and how his friends envy him. You see it isn’t just recipes but anecdotes about why and when these meals were made so it is a family history and I took pleasure in producing it and having it bound.

This weekend Jonathan is cooking for us. Raymond is having to do everything here at the moment since I am rather helpless. Sometimes it takes all the energy I can muster just to get up, bath and get dressed. As a consequence Jonathan thought it would be helpful if he cooked some meals and froze them for us. So sometimes it is good to be carried a little on someone else’s shoulders.

A successful day

Our day at the Royal Marsden was very successful. We seem to have found a really good direct route now. Although nominally our appointment was for 3.30 p.m. we explained that we needed to avoid the rush hour so we were actually seen just after 1.00 p.m. for the blood testing. Many of the tests were already done by the time we saw the doctor. The blood counts were up which is good but we also got the results of the bone marrow aspiration from last time.

There is no trace of lymphoma in the bone marrow which is excellent. Of course there could be nano particles of mantle cell somewhere but the second part of the results is that the graft is really settling in. This means it can fight any residual mantle cell lymphoma. So I am in remission.

I asked how I was doing and I was told “better than most”. We came back from the hospital lighter than air. They are very efficient and I feel much more confident in their hands.

I know there are lots of steps along this route and all sorts of hidden dangers but to get this far so well makes me feel very grateful and I am very ably supported by so many people; it is quite humbling.

I look back at the dark days a year ago. This was the time I was still hunting for a donor and everything seemed even more difficult because I had just discovered that I was donor conceived with no knowledge of my father or his nationality. I am still no further on in my quest unfortunately. The generosity of my bone marrow donor really lifted my spirits and has given me the chance of a new life, but there are still a few questions about my old life I would like answers to.

Keeping in touch

It’s difficult to put into words how much the support of family and friends has really meant over the past few months. When I was in hospital, knowing Jonathan and Josie were near at hand and seeing them after work was so reassuring how. Similarly, since I have been home, Anna has spent so much time with me as I can’t concentrate to read and visiting her grandma in hospital. She is going to Bath and Exeter for a few days from tomorrow and I shall miss her.

The bulk of the care has fallen on Raymond’s shoulders, getting our house up to near Marsden standards of hygiene, washing, cooking and lifting my spirits. He has also had to take a major role in visiting my mother in hospital which hasn’t been easy.

Emails from friends have kept me in touch with the outside world and have been so welcome. I find writing something of a chore at the moment so the keyboard is a lot easier. My poor hearing was already affected by tinnitus from previous operations but it has been affected once again by the drug overload I am undergoing so log telephone calls are out. I think I shall have to undertake a class in lipreading in the Autumn in case it is a permanent effect.

Hopefully now the holidays are over, we shall get some sensible information from the hospital about my mother as to proposed treatment and discharge dates. I don’t think she is acutely ill but it is so difficult getting information out of the hospital staff. It has all been so vague over the last few days. I’d just like to see her safely out of hospital.

Easter Monday

Still no further news about my mother coming out of hospital. I think everything hibernates over public holidays but I’d like her out as soon as is safe for her to do so. She is keeping up her spirits and Raymond and Anna are visiting her every day.

I am still quite exhausted and find all reading very difficult. For once I didn’t even attempt to buy a paper as I knew I wouldn’t read it. Anna and I have been watching t.v. quite a lot and Raymond took me for a drive out into the countryside He has had the AMG completely refurbished so it was very comfortable.

We went out to the Meon Valley and Portsdown Hill and it was so good seeing all the fresh colours and spring flowers and blossom everywhere. We weren’t out too long in case I felt sick but it was a wonderful break.

Easter Day

I’m now on the next stage of the transplant. It’s all less dramatic than being in the bubble, but the first hundred days of survival is very important. At about 100 days it is possible for the graft versus host disease to kick in but in the first 100 days it’s all about avoiding infection.

For this reason I’ve not been able to visit my mother. She is still in hospital and probably won’t be discharged until Tuesday or Wednesday. The contrast between where she is and the Marsden couldn’t be more apparent. I just can’t wait until she is out and not in danger of acquiring an infection.

I am incredibly tired. I suppose it’s the drugs but it is difficult to stay awake and as for concentrating on reading, forget it! Eating is a bit of a battlefield too as I rarely feel hungry. On the other hand I still have a lot of fluid puffing up my face so I look like a hamster.

It was interesting meeting a couple of people at the Marsden who had had bone marrow transplants in the past. It would seem they were having some out-patient treatment, a bit like car servicing. I don’t think that my treatment, unlike some people, will mean being able to walk away completely cured, but I have come round to the way of understanding how it may be in the future. It takes time to adjust to the fact.

It’s Easter Day. The time of rebirth and renewal and it really is so significant for me. Happy Easter to all of you - may it be the time of renewal for you all.

Wonderful to have come home

It has been wonderful to come home even though I am armed with a case full of medicines. Anna and Raymond worked hard to get the house invalid friendly. This would be easy in a newer house but ours has all sorts of nooks and crannies.

Yesterday I returned to the Marsden to have check-ups which were quite satisfactory and a bone marrow aspiration which was uncomfortable to say the least. It was an exhausting day but much better than having to be an in-patient.

We had expected my mother would have been out of hospital yesterday but it looks as if it will be Saturday at the earliest. She had some tests done but the results take so long to be achieved. This is in marked contrast to my blood tests which were taken at 1.30 p.m. yesterday and on the doctor’s screen by 2.15 p.m. She can’t wait to get home and when Ray and Anna had a chance to see the ward they couldn’t help contrast this unfavourably with the Marsden.

With all the drips I have accumulated a lot of fluid which is difficult to shift so each morning I wake up with very puffy eyes, face and ankles. I am trying lots of water but it is not always easy. However, who said this would be easy? I am very grateful to have been able to get out of hospital after 5 weeks; I had thought it would be longer. Seems like all those walks really paid off!