Time to bring you up to date with 'wotz been happnin' over the past few weeks, since I received my biopsy results.Well, I had my 'final' consultation up at Hammersmith a couple of weeks ago. I say final, but I still ultimately remain under their supervision and will be back up there for my one year post transplant review in January. Until then all ongoing blood tests etc will be done under the care of my haematologist at Kingston hospital.
As for the consultation, we discussed the biopsy and PET scan results and the options available to me moving forward. There were only really two, either to start with a 'maintenance' therapy or to follow a more passive watch and wait policy. Given my current blood results and the fact that I have a good quality of life (even though I haven't won the lottery yet) Len, myself and the consultant all agreed that a more passive stance would better suit my current situation.
Maintenance therapy has its own side effects, which would definitely have a negative impact, whether large or small, on my lifestyle. It would mean taking a low dosage of either Thalidomide or Revlimid, the only two remaining drugs (I've already had a course of Velcade) currently approved in the UK for the treatment of multiple myeloma. Using them as a maintenance drug would potentially mean they could not be used when (yes, when) I relapse....unfortunately your body eventually becomes somewhat immune to the effects of each of these drugs. Another consideration is that there is currently no scientific evidence to confirm whether taking a maintenance drug prelongs remission.
Anyway, decision made, I'm taking the monitor route for the time being. I'll continue to have monthly blood tests for a period of time until I eventually move to needles every three months, a necessity to ensure my blood counts remain stable and most importantly, to keep a close eye on my paraprotein levels, the indicator of how active my disease is.
So, what else is new? Well, yesterday was my first day back at work since the end of November. Weird....like your first day back at school after summer holidays....not that I've done that for a while!! It was strange to meet up with colleagues that I'd only had contact with via Skype for such a long time....even walking into the building felt a tad surreal. Tiring as well. I was only in for half a day, but still needed to rest in bed for a couple of hours when I got back home.....maybe that's just an age thing!! Anyway, as my consultant has said, I need to take things easy to begin with....he doesn't want to see me back in hospital with shingles again. It's funny, my head is telling me I'm fine, but it's going to take a good year before my body catches up with the idea.
Anyway, just to finish with, I have been thinking a lot recently about the amount of love and positive vibes I've received from all my close friends, relatives and family since my diagnosis this time last year. I'm amazed by the support you've all shown and the patience and understanding my wife and son have given me. Even now as I write this I'm starting to cry and I really can't put into words just how much you've all meant to me and helped me through this difficult time....even though you never clubbed together to buy me that one million pound Koenigsegg...you're forgiven!!
