Life after Stem Cell Transplant -the continuing story
Thoughts after stem cell transplant and the new "normal"
Thoughts after stem cell transplant and the new "normal"
Well it's almost exactly 12 months since my stem cell transplant and generally things have gone pretty well. The lack of stamina and fatigue in the early weeks was the most noticeable thing but gradually things improved in those areas. The hair returned fairly quickly and was quite passable by September. The hospital visits went from every two weeks to monthly as all the blood counts rapidly returned to normal. In July the hospital agreed that as progress had gone as expected I could fully resume normal activities which included DIY. That knowledge was rapidly assimilated by my daughter and her husband and I was soon commissioned to build 26 feet of raised flower boxes for their back garden!
In mid September we arranged to go on holiday touring around the UK for three weeks. It went very well as was demonstrated by the fact that neither of us wanted the trip to end. The only slight downside was a clinic appointment that I had at the beginning of the break. I agreed to continue the trial and was selected to receive a maintenance dose of a drug called Revlomid which I had tolerated well in a higher dose as part the initial treatment. However days after starting the drug again I experienced a range of side effects, none very significant on their own but in combination were starting to affect my quality of life and after discussion with the hospital I stopped taking the drug and things quickly returned to normal.
I want to digress here because the word normal has different connotations but what does it mean in my new circumstances. I have a cancer which is incurable (based on current medical knowledge) but I have responded well to what has been described to me as the gold plated treatment which included the stem cell transplant and I am now in what is technically described as a "very good partial remission" . I never realized that there were 4 distinct definitions of remission - the best which most people would aspire to is "complete remission" but I am in the next category because the most sensitive test they use to test for the paraproteins that are symptomatic of Myeloma is not showing absolutely clear at the bi monthly tests. So the new normal has me an my family living with cancer. But at the start of treatment what did the consultant say the aim was? The word cure was never mentioned but neither was the promise to restore me to normal what ever that was! Instead the undertaking was to give me as long and as good a quality of life as possible. So the new normal is about quality of life not about life before cancer. But I can do everything that I used to and everything I want to do but just not at the same level of efficiency as before- and yes I still get tired quite quickly. It's much more about pacing myself and trying to do things more intelligently although I am not sure that the recent week which saw me shift 4 tons of gravel qualifies on either count!
Earlier in my blog I have highlighted some of the lighter sides in my experiences but cancer does have a darker side and unfortunately when you have cancer you become more aware of cancer around you and during 2016 I lost 3 close friends to this awful disease:-
I met Matt in August 2015 in Ward 7y in Hotel Royal as he always called it. We had both been diagnosed with Multiple Myeloma. When I first saw him he was coping with crutches but these didn't stay long and he was soon managing with just a walking stick. It was, as I quickly found out, an illustration of his fantastic inner strength and determination. We spent a lot of time talking and we bunked off the ward together for trips to Costa and civilisation. I was in awe of the way that he had coped with everything that had been thrown at him. We kept in touch via Facebook messenger and exchanged frequent audio messages after we had left the Royal and we kept running into each other on 7y day Ward and always stopped for a chat. He was so positive and forward looking. In March Matt went in for his donor stem cell transplant and in early April I went into 7z for my own stem cell transplant. We kept in contact and Matt always sent me messages via the staff who moved between the wards. I went home on April 25th but I was absolutely devastated when I opened my Facebook the next morning and saw a message that Matt hadn't made it. He was only 42.
We had been friends with Sue for nearly 19 years, she was the registrar who married us and she officiated at our daughter's wedding in 2010. She had suffered with cancer for a number of years but just over two years ago she was given a terminal prognosis but she kept going and was able to participate in the lives of her first grandchildren, two sets of twins. However in May it all caught up with her.
Ian I had known for 20 years. He was a little younger than me. We shared some good times together and they joined us on holiday several times. He was diagnosed with throat cancer at the same time as I was diagnosed with myeloma and we kept in close touch as we progressed with our respective treatments. His appeared to be successful and we thought he was recovering. We had dinner with them in September on the way back from holiday and had no indication that his condition had deteriorated to the extent that he died just before Christmas.
Cancer is terrible and there are risks with the treatments you receive to try and deal with the position. The staff treating you are not immune to the emotional fallout that can result whether it is being as elated as the patient when a set of results show unambiguously positive or, as we found, when a senior registrar broke down in tears in front of us because some patients had not been able to survive the stem cell transplant process.
So here we are living with the "new" normal still forward looking but a bit more circumspect about things. People you meet invariably say "you look well" but perhaps what they mean is that "you look normal" but they don't really understand what that means especially as many people still equate remission with cure. Luckily with no treatment underway and with the intervals between hospital visits now measured in months rather than days it is rather easier to plan and get on with life. A gentle concern always arises as you wait for the bi-monthly blood results but you have the comfort of knowing that the same team of professionals that oversaw your treatment are continuing to monitor you for signs of the disease becoming resurgent and remain poised to take action if required. At the moment the results are looking very good. A minor op in February for carpal tunnel release provided an opportunity to test the cartilage for para proteins and as expected they came back clear. In early March I agreed to undergo another bone marrow biopsy (not sure why because it is my least favorite procedure. As this was number 4 the novelty had well and truly worn off) but the results came back saying "no disease detected". So we seem to have a good base to go forward. The next bloods are due in May and it would be nice to see this trend maintained.