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!