After a lovely weekend of kayaking, dinners with friends, dinner with family, enjoying the garden, today has been spent on the sofa sleeping more than I believed I could. The analogy I used a number of times, about climbing a mountain with the AHSCT being the summit, then a long journey down the mountain with many small hills to climb, still rings true.
The chemotherapy involved in the treatment is very real, and the effort over a long period of time for my body to re-establish it’s immune system should not be under-estimated. Because I feel so well generally, I’ve found it very easy to ever-exert myself. So far, all that has been required is one sofa day then I am fine to resume reasonable activity. However, each time the happens is a reminder to keep the pace of life very gentle. ‘Reasonable’ now is not ‘reasonable’ from a few years ago, although my limits are gradually moving towards the energy levels I used to possess.
The image is also somewhat misleading, as the aim of the treatment is to stop progression, and this image shows an upward path. More accurate for many people would be to show halting of a downward path.
Stolen from https://www.mssociety.org.uk, a very good resource for all types of MS information. The Canadian and the Australian websites are very informative, as well as this one.
HSCT is an aggressive treatment, so recovery can take some time. Typically, people need between 3 and 6 months to recover from HSCT. But for some people, it can take more than a year to fully recover.
A few photographs from the weekend … a beautiful calm, sunny autumn morning turning to grey, with showers late in the day. It’s definitely autumn here now.
And one of the reasons for the stress this last week ! Who knew a fur ball could cause so much chaos ? He’s fine now, and I am so thankful for pet insurance as this was an expensive little exercise. An operation, ICU for small animals, post op care etc.
My Longest Journey 