Friday, 23 April 2010

Hairgate...... Part Two

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.

10 comments:

Sybil said...

It is so wondeful for us all to get your latest news and thoughts..I do hope the pain in the back etc will ease a bit even if it takes a wee while...with teh lovely summer days to come I am sure we will all feel so much better. I'm sorry if your hair decided it's had enough of your head..it sucks for sure...
Isn't it wonderful to have our happy memories to look back on and reminice, just this morning my sister was showing me a couple of cards she had just found one from Mum for her birthday in 1948 !! and one from Dad in 1952 !! why they would be seperate we have no idea..She had also found some black and white small pictures of me when I was about 3 that I can never remember seeing...
Keep smiling our wonderful warrior.
Love Sybil xx

pam said...

Hi Jane. I can Imagine a few people reading your entry and simply not knowing what to say. Me, being the "gobby" exception of course, always manages to find something! lol. Sorry to hear about ur hair. Us ladies are so funny about our hair. My nephew Is a mobile hairdresser and returned his answer to my txt earlier with a great big NO! I had asked to go Bright Red again! lol. Stay strong Jane and keep doing what u do best, being the female equivalent of "Rocky". Don't start boxing Martin tho! lol. Keeping you close to me as always. Tons of Love from me to you.x and Martin & The Family. Love Pam.xxxx

Deb said...

Your family, like ours Jane has been very blessed indeed to have the time to realize just what is truly important in life. Unfortunately for many, they do not get that opportunity until it's too late. We cherish "every" moment when all four of us are together, and despite the bad things that cancer brings, it also allows us to create special moments and memories that we probably never would have taken the time to do otherwise.
It's wonderful to read your posts again.....don't ever let that fighting spirit of yours waiver.
From across the very cold pond today........
Debbie

Jackie said...

Men probably don't understand why a loss of hair is so devastating to us girls,so many of them choose to be bald. My hair has thinned on sutent and I've tried different wigs, but not yet had the courage to wear them out! A new, but very dear friend lost her hair to cancer and it won't grow back she has accumulated so many wigs in differing styles and colours and she looks great in all of them. It's a matter of confidence I guess, but you are such a lovely person Jane with or without hair your spirit will shine through.Your still with us and that's all that matters at the end of the day. xx

LYN said...

WISH YOU COULD BE PAIN FREE ALL THE TIME...
I BET THE REMINISCING IS BITTER SWEET..
ALWAYS HAPPY TO READ A POST FROM MY WARRIOR!!

mortonlake said...

im sorry you are in pain,im sorry about the hair loss,im just glad you have your family.i know how hard it must be to keep focussed and fighting,but you do.and as always my dear friend you make me proud to know you.tc love mort xx

1208茹宣dinoreale said...
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ADB said...

I continue to admire your spirit, Jane, that you continue to see the positives amidst so many negatives. There are some improvements indeed, and I hope more will follow.

nick said...

Jane, how are you managing with stairs at the moment?

I don't know if you'd considered a stairlift? I don't particularly recommend the one I give a link to, it's just to give an idea of the sort of thing that's available if you're interested:

http://www2.acornstairlifts.co.uk/?utm_source=bing&utm_medium=cpc&utm_campaign=Location&utm_term=stairlifts%20in

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