Sunday 21 February 2016

Blue period, black comedy.......

It's official. Mike will be going back onto treatment in April. The plan is to have a course of chemotherapy followed by a second stem cell transplant. The path however is not so easy. 

Before we start they have to first check whether Mike still has enough stem cells stored, who remembers the angst back in 2010? If you need a reminder you can read about  day 1day 2 and the final total . I hope they did keep half back, if not, then they might be able to get a few more out. 

The next hurdle is finding a drug to treat Mike with. Unlike our cousins in America, Scotland and Wales, NHS England has "rules" in place. You can't have Velcade a second time, even if it worked brilliantly when given in part previously. Between NICE, NHS England and Mike's kidneys being useless we have very few options. No trials will have him, the likes of Revlimid could cause a clot that would destroy his dialysis fistula, the old saying "stuck between the devil and the deep blue sea" comes to mind.

Mike is very laid back, Dr B. will work something out.......

Lorna is feeling like a caged animal whose life is in the hands of everyone else, with no control over any of it. 

I realise this time around that all my angst last time was caused by the feeling of not being in control of anything. I know because it is exactly the same this time. Who knew,  I am a control freak!!!



Saturday 6 February 2016

What to do?

I am only a couple of weeks into my fund raising but it has become clear that there are people out there who have decided they won't sponsor me as they don't actually want me to shave my head. That leaves me in a bit of a quandary. Do I let down the few who have generously donated already and not shave my head? Do I come up with another idea? Do I do it despite not reaching my target? 
It has left me feeling a bit useless. What with Mike's dialysis five times a week,  looking after the essential household tasks and trying to run a small business I don't have the time to spend training for an athletic task. So dear readers I really need your help with coming up with a plan.