Saturday, 4 May 2013

TOF playing up today.

I didn't get to sleep until 4:30am this morning, I had a lot of things running around my head. I feel so scared at the moment, afraid of leaving my family and really not ready to.... should I say it ...... Die  : (
I want this miserable black cloud to shift.
It has been on my mind about what was written in my notes in 2010. I hope I can shift it. It said that I have disease in my oesophagus, this was written by the stent Dr. He was not happy about me taking the stent out and may be it was scare tactics to keep it in or jusify keeping it in. I was always told there was no disease there to hold the stent in place, I had 2 and both has slipped causing me a lot of pain which is why I wanted it removed.
No where in my reports has it said that there was disease and Dr TOF in Taunton told me there were no blockages as he had done an endoscopy.

I am trying to get my head around it still. I know I have to move away from it.

I had cereal for breakfast, I managed that alright, I had a banana, yogurt, Actimel drink and a Complan drink for lunch which I managed. Tea time I had a sweet potato curry which Siobhan had made. She had put lentils in it which irritated my TOF and caused aspiration. It took me a few minutes to get myself together. So it will be soft diet completely until I have a dilatation and once that is done I hope it helps with the breathing, it is so much better than it was. This has been the most frightening experience so far.
I hope I hear something from the hospital very soon as I cannot afford to lose anymore weight.

Well done Kieran, he has an article in the paper with his dad all about the relay for life for cancer research. I am not sure what the journalist was thinking as he seems to have mentioned me 3 times??

Kieran doing his Xbox marathon, He raised over £200 for cancer research.

Good luck to Alex with his snooker marathon and to the Misfits team.

No comments: