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.

Annual dinner contd.....

Thank you Nick for replying so quickly on behalf of the JWF - although I was a little surprised to see it here on my blog !

I was delighted to hear that last year a number of patients were able to attend the annual dinner and your aim is certainly not to exclude patients. However, by pricing the tickets so high - 120 pounds IS high even by London prices - you are excluding many of us - albeit unintentionally. Surely there must be some way of reducing that cost and raising money on the night itself? The way it comes across at the moment is more of a corporate charity event with a table priced at 1100 pounds - tax deductible of course for companies but not for individuals.

Maybe some changes could be considered for next year?

Anyway, thank you again for your reply and hopefully we will meet again soon,

Jane

Dear Earl Lowe and JWF............

Dear Sir,

I am writing to thank you so much for the invitation for my husband and I to attend the Presidents Annual Dinner at the House of Lords in June. I was so excited as I ripped open the envelope with the crest on it and read the first few paragraphs. I don't get the opportunity to go out much nowadays, especially not to black tie dinners.

However, I'm afraid I shall have to decline this invitation. You see, not only am I a supporter of the James Whale Fund but I am also a patient and sufferer of this dreadful disease - renal cell carcinoma. I have been fighting advanced kidney cancer for three and a half years with operations, procedures, treatments and drugs I have had to fight tooth and nail to gain funding for. During this time I have, on behalf of the JWF, made a promotional film about RCC - 'Kidney Cancer, Jane's Journey' - taken part in several awareness events, written many media articles on the subject and have been heavily involved in the fight to secure funding from NICE for kidney cancer drugs.

Having cancer is in itself is an expensive business. I no longer am able to work. My husband has had to take a lot of time off work to both look after me and take me to my many and various hospital appointments - plus pay for the pleasure of parking there - and we still have 2 children living at home. So paying 120 pounds for a meal is totally out of the question, plus the cost of travel and over night accommodation we would need.

I am guessing I'm not the only patient to receive this invitation and whilst I can appreciate the need to raise funds for the JWF, sufferers of the disease are perhaps not the best place to start. Believe me if I were to win the lottery next week the JWF would be the first charity to benefit from it but until then I do all I can in my own way.

I wish you all the best for the dinner in June and hope you raise a lot of money - and thank you once again for the invitation,

Yours faithfully,

Jane Thompson



(I wonder if I will receive a reply?)

Back with a blast !!

I'm so sorry. Its been weeks since my last post - Im not sure why to be honest. The fact that I'm still typing with one hand, and still in pain, could have something to do with. My latest bout of radio therapy on my right arm was rough - very rough indeed. The pain was almost unbearable and I cried with relief when it was over. That was 2 weeks ago and although the pain has lessened its still there, nagging away, making me wince and jump regularly. I'm still optimistic it will improve further soon. Very soon hopefully as having only one fully functioning limb is a real handicap !

Ive had another stay at St Mary's - primarily respite so Martin could go to France for a few days with his mates to play golf. But it coincided with yet another infection in the wound in my right leg. This is tiny now - just a small hole - but it just seems to refuse to heal. So yet more anti biotics and daily visits from the district nurses to dress it. The slow healing is probably due to Afinitor - it is a known side effect. Ive been on Afinitor for over 8 months now and the side effects have been minimal - a sore mouth and change of taste (particularly annoying in the case of chocolate !) and anaemia which means regular transfusions. As my veins have virtually disappeared by now it takes a very skilled doctor to cannulate me - and several go's. In fact I was due to go into hospital to have a Hickman line fitted last week but cancelled, with Dr P's agreement. Ive just had enough of being messed about with lately and need to be left alone. At home. I do so much better at home. And so far my Hb is fine. I'm eating better at home and sleeping better and I just FEEL better.

This week something happened which has annoyed me intensely - in fact I'm really, REALLY angry about it. On Wednesday a lovely thick expensive envelope landed on my front door mat. I recognised the embossed crest as coming from the House of Lords. The same as I had received last year when invited to 'Afternoon tea' there. Excitedly I ripped it open and sure enough it was another invitation - to the President of the James Whale Fund, Earl Howe no less, annual dinner in June. It sounded fantastic, very posh with black tie and champagne etc.

Then I read the last paragraph. Martin and I were invited for sure, but would have to pay 120 each for the privilege. 120 pounds EACH. And that was just for the meal. No travel or hotel included.

Disappointed isn't the word. I was gutted.

Then I got angry. VERY angry. Here I am, a patient who has been very poorly for past 6 months and who has worked for the JWF a lot in the past what with the film and awareness campaign, being asked for 240 pounds so me and my husband can attend the annual dinner.

Are they mad? Don't they realise just HAVING cancer is an expensive business what with car parking fees every time you visit hospital and the amount of time Martin has had to take off work lately. I bet I'm not the only patient to receive such an invite either.

My first reaction was to rip the bloody thing up but then I thought 'No - I'm going to reply and let both Lord Howe and the JWF exactly how I feel' So I'm busy composing a letter right now. I'll let you know if I receive a reply !

My legs and arm are aching quite badly now - it's taken me 2 hours to type this left handed - so I'll finish in another post in the next few days.

Thank you everyone for your good wishes and prayers - I'm still here 3 years and 4 months after diagnosis so they certainly are working (plus the fantastic work Dr P has done)