I’ve not blogged for quite a while because I have been waist deep in boxes making it hard to find the time to update the blog with my transplant developments. When I was admitted to hospital in March 15, hour upon hour in the bed gave me a great deal of time to think, feel and reflect. I found that I missed some elements of my pre-AML life more than other elements and often these realisations surprised me. For example I missed horse riding so much so I was envious every time I spied a horse in one of the many box sets I watched, I craved open space and the sound of birdsong. In contrast I didn’t miss the wining and dining in London to the extent I thought I would. As my treatment progressed and my first transplant failed I spent many hours in my home recuperating consequently home turned into a prison, combined with the fact that the leukaemia painlessly grew inside of my bone marrow whilst I slept in my house I started to feel the home turn into a house I no longer wished to live in. Home for me is supposed to be your own personal sanctuary and instead it became a place I felt negatively towards. In many respects this is a great shame as my house was and still is a beautiful property but for me it was soured and full of memories I wished to leave behind. I made the decision post my second transplant to put my property on the market, at the time I had no plan as to where I would go. Normally I plan my life in minute detail, cancer has taught me to go with the flow a little more so I resolved to do that. After one week on the market I had received six offers on my house giving me confidence that the house would sell gently nudging me to I come up with a plan for my future. The hours of reflection whilst in Barts gave me food for thought and I decided to follow a dream I have had for many years, I settled on the Cotswolds as my new home.
The last few weeks have been hectic as I have sorted through my belongings, packed box, after box and hurtled up to the Cotswolds to find a rental property for me and my furkids whilst returning to work and dealing with my medical woes. I’m pleased to report that I found the most idyllic place which I hope will bring a more irenic lifestyle along the lines of what I craved when I was in hospital. I may have physically healed but as you may have learnt from my previous blogs chemotherapy has had an effect on my long term wellbeing / lifestyle, I have also had a harsh education with regards life and death over the last sixteen months I now feel ready to work on the healing the emotional scar AML has left. The main way I aim to do this is by indulging in the things I love, living life to the maximum and by paying forward the kindness shown to me. I doubt anyone has passed through an experience such as cancer without maturing and developing in ways which they hadn’t anticipated. Now, I would very much like to take ownership of my life back whilst acknowledging all that I have learnt and confining my SCT to being a part of my life rather than the all-consuming thing AML and the SCT have been for what feels like a long time. For me the move has been a very positive adventure to focus on whilst recuperating, I suspect picking up the pieces of life pre-AML and attempting to live that life would feel incredibly odd, as I am no longer that person. My new home promises new adventures, I relish the idea of neighbours who don’t see me as a cancer patient remarking on how well I look but instead take me for who I am now. All that said, there is much I loved about my life prior to being unwell so I have approached this as an opportunity to improve the life I had whilst retaining the best bits.
Whilst I’ve been busy reconstructing my life I have had to deal with a touch of GvHD. Graft v Host Disease is a normal complication which can occur after a stem cell transplant. As I have been weaning off the immunosuppressant (ciclosporine) the newly transplanted donor cells have been in a position to attack my body. This all sounds bad but in fact it’s a great sign that the transplant has worked, the idea is that the donor cells will attack any AML should it dare to return. GvHD comes in a variety of formats for me it started with a mild rash on my neck which started to spread, at the same time my mouth felt awful. I can only describe the mouth symptoms as being similar to how your mouth feels post a HEAVY drinking session, dry and crumbly. (Please note I am imagining how a heavy drinking session feels because I’m an angel!!) Once again I struggle to fault Barts, as soon as I notified them of the rash and mouth, I had an appointment within the hour with my consultant. They confirmed my suspicions and a skin biopsy was taken to be one hundred percent certain, I was then prescribed a truck load of drugs. I have been prescribed steroids to control the rash and a number of washes / rinses to ease the dryness in my mouth. At the same time my ciclosporine level was upped to suppress my donor from attacking me. My symptoms are now under control / managed with the drugs and washes. The plan is to wean off the steroids and then start the wean back of the cyclosporine again. Apparently there is a fifty percent success rate with this approach and the idea is we just keep at it until the donor finally accepts me. Whilst it’s not great being on steroids which keep me wide awake and the mouth washes are not very nice, in reality it’s not all that bad. I just keep reminding myself that having GvHD is a blessing, combined with more than twelve months in remission the chances of a relapse are reduced by having GvHD which helps me mange my fears of a relapse.