My hair is falling out again - in handfuls. I first noticed it when it completely blocked the sink last time I washed it. And now it covers the kitchen floor and needs sweeping up every day. I'm not sure this is a recognised side effect of Afinitor - as it was for Sutent. It's only been a couple of weeks but my hair is noticeably thinner - am I going bald this time? Does it bother me? Damn right it does !!
My hair is the one thing that has stayed fairly healthy, apart from the colour change on Sutent which didn't bother me, and I don't want it to lose it now.
At least it is pain free though - about the only thing that is right now. It's either my legs, or my right arm or round my middle and back - or all 3 at once. Sometimes just niggling and mild, sometimes really severe. But it's always there. Pain killers work but only for so long and then I'm watching the clock until I can take some more. Distraction probably works best - and keeping moving. It would be so easy - and nice - to stay in bed all day but I need to keep these legs moving. They stiffen up so quickly so I have to keep pottering around the house.
My right arm is slowly improving - very slowly. It still hurts and I'm still typing left handed (and getting quite good at it !) but it definitely isn't as painful as it was. My 'third boob', just underneath the right one, has grown noticeably and I'm sure this is the source of the pain I get around my middle and my back.
But in myself, the bit that really matters, I feel better. Still strong. Not ready to give in yet. Still optimistic that I will improve physically. Even just a bit.
The Occupational Therapy Dept have supplied me with a lot of equipment to help me around the house, including a wheelchair to use when I go out, which I accept with a "Just while I need it" - sure I will be handing it back soon. I don't think anyone else is that confident from the looks on their faces.
Emotionally I struggle at times, we all do here. With me being able to do so little in the way of getting out we, the family, have taken to reminiscing a lot about our holidays and happier times. What starts off with "Do you remember when we..." ends up with us all in tears - but they are happy tears if you know what I mean. And we all do have so many happy times to remember - we have all been so very lucky.
James comes home for the weekend fairly regularly and it's so lovely to see him - for us all to be together again. You don't realise just how close you are until one leaves. And that worries me dreadfully - because I know that when I 'leave' it will be for good. No popping back at weekends for me. And that"s what makes the reminiscing, and looking at photo's and just being together so important now.