Up The Farway Tree

Ever Hopeful

So in Newcastle just now waiting on pharmacy to dispense 2nd month of drug/placebo.  I am 99% sure I'm on the active drug because am experiencing significant side effects.  Mostly nausea, headaches and fatigue.  The headaches and fatigue could just be part of life at moment but the nausea seems more surely a drug effect.  I've tried a couple of different anti sickness meds alongside the tablets.  This is taking the worst of the effects away but in all honesty I've not really felt great at all over the last month.  I also keep falling asleep which is not ideal!

Lung function today was down about 50ml to 40%.  This is less than last drop but wee bit more than month before.  It's very hard to know if it's slowing the decline as I've had similar drops in past, then followed by larger drops. Only time will tell! However let's just decide to take it as a good sign..

I was given option of reducing dose of medicine but am determined to keep going at full dose if I can... Even if just to establish whether it might be helping. It's a difficult one as I don't want to feel miserable all the time but I also don't really have options! I'm hoping with time the side effects might lessen or at least I can work around them if I know what to expect and when.

I'm feeling a bit fed up with the uncertainty and just not feeling myself of late. I'm not fit for work which makes me feel a bit lost, but I also know that work would not help the fear of the future and make me more tired. I have a lot to learn about patience!

I shall keep going and see what comes from the next month of treatment and be thankful for the fact it seems I'm on the active drug.... At least I'm getting a chance!

I'm back for review in a month and in the meantime we will celebrate Andrews 40th birthday and try to make the most of the good times!!  Onwards we go!!!