Since I last wrote my journey has been considerable. Starting with VCD chemotherapy in January through to June, which brought my paraproteins down from 26 to 8. Then came the big decision, do I go for a autologous stem cell transplant (SCT), that being described to me, by my consultant, as the gold standard.
So off to Addenbrookes, (60 miles from home) I spent a long time with another consultant as she went through the treatment, pros and cons, after which I signed up for the procedure, not without some fear and trepidation for both myself and my wife.
Then followed more days at Addenbrookes undergoing kidney, lung, heart tests etc. to see if I was strong enough to undergo the SCT. It was agreed that I was, so followed eight days of tummy injections, administered by nurse wife, prior to stem cell harvest.
Rather a large hiccup occurred towards the end of the tummy injections as my body reacted, as if I was being given very painful electric shocks and a subsequent temperature of 38.6 at 10 o’clock at night.
A phone call to Addenbrookes resulted in a 60 mile blue light ambulance dash. On arrival at Addenbrookes staff were waiting and and things were quickly resolved and the pain eased and I found myself hospitalised for a couple of days whilst being monitored. However, I was fit enough for the stem cell harvest to take place whilst there and enough stem cells were harvested for two transplants if needed. After which I was allowed home.
An appointment for a Hickman line to be inserted, followed by admission for the transplant. The Hickman line was fitted, but no room in the inn so I was sent home to await a free bed.
On the 11th August a bed was eventually freed for me so back to Addenbrookes ready for the transplant.
On 12th August I was given more chemo, Melphalan, prior to transplant on 13th August. So far so good no side effects, but as promised by the ward sister they would happen and around day five they did! Suffice to say, it was not very nice and the thought of food just made things worse. In the end, the dietician told me to just eat rubbish and things would improve when I get home.
It took quite a few days for my neutrophils to come back but things were sufficiently returning for me to return home on 1st September. I was very weak on my return home but gradually I regained some strength and was able to start short walks around the village and have very short spells in the garden.
Following the transplant there were quite a few follow up visits to Addenbrookes until December when my care was transferred back to the QE hospital at Kings Lynn, so much nearer to home.
Did the transplant work? well partially it would seem. Everyone keeps telling me how well I look, including my GP and my paraprotein level is now 13, but my bloods all seem to be OK, so I am on three month checks with my consultant.
There have been a few more hiccups this last week in that I have developed a DVT in my right leg, initially it was thought I would have to have Clexane injections for the rest of my life, but thankfully I am now able to take a blood thinning tablet daily instead. I have also contracted shingles which requires massive does of Aciclovir for a week but hopefully these are working.
The bottom line is whilst SCT is not a pleasant procedure, it is achievable, especially with the fantastic support of the nurses at Addenbrookes and the love and care from my wife. The hardest bit for my wife was being 60 miles away in Norfolk and only being able to visit me occasionally with the help of friends and family.
