It is a long time since my last blog entry, which was to a large extent intentional. I felt I needed time to recover from my stem cell transplant and gauge how my health was panning out before writing again. Health-wise I have to honestly admit that things could be much worse. The things I most like to do such as meeting family and friends, attending my singing group, camping and walking, I can do pretty well. My stamina has improved and though I am still bothered by back pain, a couple of swigs of Oromorph did get me up Long Mynd and 8 miles along the Mawddach Trail, for example. From time to time I need short rests, but then the pain quickly subsides and given a comfy chair, I remain pain free until the next bout of effort. I don’t get back pain at night and can avoid it quite a bit generally, however housework and energetic walking, and particularly standing around, can set it off. I also get some neck stiffness on waking but this quickly resolves in a few minutes with some stretches. My recent scan showed there are no new lesions in my spine but the doctors do say that the healing takes a long time and the pain may also be a problem for a lot longer, though they are confident it will eventually lessen.
My other main problem is my appetite which remains precious and precocious. My weight is now 9 stones, giving me a BMI of 21, which is fine, but I don’t want to dip much lower. I have decided to eat more white bread and toast to top me up a bit. The main difficulty is getting in a big enough portion of any main meal. Sometimes it is absolutely fine and other times impossible. Martin who has always generally done most of the cooking takes great care to cook food I would like, but sometimes I turn my nose up at even my most favourite food. I augment the day’s intake with little puddings and yoghurts. I try to have as much porridge for breakfast as possible loaded with fruit but today for example I couldn’t face preparing it so had strawberries and cream instead. A little unusual perhaps but I have decided that unusual is ok. The eating and the backache are my two main problems, which when I see the health issues even my own family are coping with, makes me see my own situation in perspective.
I am also less comfortable sleeping than I used to be. I sleep right on my side which probably because of my weight loss causes pressure on my hip and shoulder. I am experimenting with mattress toppers in memory foam so if anyone has any tips re mattresses and toppers, please share. So all in all, I am tons better than I was. My Myeloma proteins are well down which is good and I feel I am being well cared for by the QE and my GP. Myeloma won’t go away but it can be managed and for me there are many treatment options.
My mood though goes up and down like a roller coaster. On the one hand, I still enjoy so much about life and can do a lot. On the other hand, I grieve about the things I can no longer do. It is not so much a fear of the future or a fear of dying that bothers me because in honesty everyone experiences that even when they are well, if they dwell on death. It’s unavoidable, just a fact of life. At 18 we don’t really believe we will ever die but as we get older the realisation dawns on us. For me my current worries centre on what has changed and what I can no longer do, even if normal ageing precludes many things anyway, so the loss can’t be simply pinned on cancer.
Not being able to work in my garden to the extent I would like to bothers me. Strangely, the garden actually continues to look fairly ok, if a bit wild by now. The fact that I can’t raise the clippers and cut the hedge anymore or really dig out the weeds leaves me with a deep sense of loss if I dwell on it. The fact that the natural changes of time would anyway mean that I would eventually not be able to do these tasks even given perfect health is obvious to me, nevertheless I am sad about it. Martin does quite a lot and he is lining himself up for the annual hedge cut. My wonderful lady gardener, Garden Gal, has emigrated to Holland and apart from her gardening, I also miss the contact of her friendship. We will have to find someone else. I won’t say a replacement because I don’t think there is one. She is irreplaceable. However it may be possible to find someone to keep the garden tidy. I haven’t tried to find anyone yet, I think I need to mull it over for a while. Losing the ability to do something so taken for granted that we could do before like climbing a tree, skiing, running a mile or whatever it is happens to all of us eventually. Nevertheless the sense of loss isn’t always easy to accept.
On the other hand, there is still plenty I can do. At Easter we travelled in the van down to southern Germany, very close to the Austrian border. We spent a week with Martin’s family celebrating Ulrich’s 85th birthday.
It was a lovely week with excellent weather and lots of hill walking, lake circuits and other outings.
In June I travelled alone to Greece to stay with my Emma and her family. I had a very good time, the weather was very hot so I even went swimming in the sea.
On Friday we came back from a wonderful dual destination camping trip to Wales with Martin’s sister and her husband.
The weather was very kind to us, virtually no rain, and we explored headlands, walked coastal paths and spent a lot of time just staring out to sea. The holiday involved many miles of walking and the company was wonderful. We had lots of fun.
Yesterday was Sing & Tonic’s last gig of the season in Worcester, and we sang our hearts out. The weather was warm and mild and we thoroughly enjoyed ourselves.
Many more events are planned for the summer for me and Martin, including two more seaside trips, and we hope to spend some time with my daughter Katie and her children.
I have never been patient and am always restless. I realise that my illness has affected my life but I also know that I am so much fitter than last year. There is so much I want to do and I am still adding to the list. I have to recognise that it has been a hard year but I have come through it and am out the other side. I need to cut myself a little bit of slack, be kind to myself and concentrate now on getting stronger and fitter, but coming to terms with change is very hard.