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)
I almost took pity when I read your post. It's a sad situation indee. You can't have anything to do but depend on yourself and your family as well. You are deeply frustrated of the fact that illness make us hopeless. We can't enjoy typing with two hands, cooking or even driving a
hybrid car. It's a sad thought after all.