Tuesday, 22 May 2012

Why Do You Have To Be A Heartbreaker

They've canceled me! I cannot bloody believe it, I was so shocked to get the call that I burst into tears at work, something I rarely do. I know there are people out there who don't understand the fear I have of this procedure and think I'm an idiot and a 'drama queen' to get so upset but they don't know how much it takes to even agree to it. The bottom line is one bad experience can ruin things forever. If it wasn't for something so important as my transplant chances I'd have refused point blank. As it is I've spent the last few weeks lying awake at night trying to psych myself up and reassure myself that it won't be as bad as I think. As a result the disappointment was crushing. I went and sat in my car until I could control my tears the went back and finished my shift even though my concentration was all to pot. I told my supervisor what had happened and requested that I take today as leave and return to work Wednesday. I explained I just needed some time and she was very understanding and agreed the leave immediately.

By the time I got home I'd become more or less resigned and managed to tell Andrew and Peter what had happened without bursting into tears again. As luck would have it both were going out that evening one to work and one to a meeting so by seven I had the house to myself. After doing my drug regime, I gathered up the cats and a box of tissues and sobbed my heart out for a couple of hours. I cried so hard I gave myself palpitations. When I finally calmed down I felt so much better. I hadn't realised how much stress I'd been under and it all came flooding out. By the time the boys came home I'd treated myself to a pizza and was sitting on the settee with a cuppa quiet calm.

Today the anger has appeared and I'm bloody furious that this has happened again! I know there are people who are much more in need than I am and I know they would not cancel without good reason but why is it always me? I know it sounds selfish but I'm also in need, I've already been told that I need a transplant as quickly as possible and yet it is one delay after another. Throughout my entire PH journey I've never had a procedure I've been booked in for on the day. I've always, always been bumped and I don't think it's fair. All PH patients are told to avoid stress but at the moment my biggest source of stress is the hospital itself. I'm seriously beginning to regret agreeing to transplant, I can't help thinking going on the list, with no guarantee of success, is worth all the aggravation. I knew it wouldn't be an easy road but I didn't expect it to be this difficult, for me or my family.

I was very sad to wake up the the news yesterday that Robin Gibb had finally succumbed to his cancer. The BeeGees are another part of the soundtrack of my youth that have now gone forever. I loved Saturday Night Fever and especially the song Staying Alive which I'd bounce around to as though I were on springs. Even hearing it today I have to move to it, I end up breathless and blue but what the heck. Sixty two is far too young to die and who knows what great music we've lost. Robin was also well know for his charitable works so not only was he a great entertainer but he cared for people, I believe but I maybe wrong, that one of his charities involved wounded service men. I suspect he will be missed by many more than just those in the music business.

Just had a call from Carl at the Brompton. He has heard of the cancellation and was extremely sympathetic, of all the medical staff I deal with he knows me best and understands. He will have words with the doc's at the Brompton and see if there is an early slot he can fit me into so I can have the procedure there. Harefield doesn't have anything free until July and Carl doesn't think it is fair for me to wait that long. However he also had good news, I can have my catheter fixed this afternoon as long as I can get there by one. So at least I'll get one thing sorted. Peter has suggested lunch out and then a trip to a gallery or museum afterwards, sounds perfect.

I have just discovered the full convoy list for the Olympic torch.

Accompanying the flame are...
2 motorcycle outriders
2 police cars
1 pilot vehicle
1 minibus
1 chaperone car
3 sponsors vehicles
buses (unspecified number)
1 bomb disposal team
local police, security,traffic and outriders (unspecified number)
ambulance and fire brigade (unspecified number)
Shuttle buses for media (unspecified number)
sponsors back up vehicles ( unspecified number)

What a waste of money! How on earth are we affording this when we can't afford to give our retired a decent pension or fund life saving cancer drugs? I'd have a rant but I am genuinely lost for words.