Well it was just monumentally shit. I am between disbelief, anger, feeling utterly patronised, disappointed and generally just entirely let down and as if I’ve just been sent home to die after their incompetence over the last 7 weeks.
I’ve had a pretty awful day anyway, my sweats are getting so bad and constant and the pain level this morning was beyond anything I’ve had to far, I was literally on all fours wailing like a wounded animal for an hour. That’s besides the point though, it did pass eventually and I just want to talk about this meeting.
So first we met a new clinical nurse specialise who works in Belfast, she smiled at me in that pitying, patronising way that you just know bad news is coming. I had to go on a wheelchair as there was absolutely no way my legs were carrying me from the car park to the office on the other side of the hospital. I doubt that gave a great impression of my vigour and vitality.
20 mins late, Mr Vass saw us. He also had that pitying bad news look and soothing voiced lack of action demeanour that suggested things were even worse than I thought. And they were. The CT scan taken on Thursday before I left the hospital shows the tumour is now basically taking over my entire liver with resultant extreme pain and jaundice, my liver is really not working at all now. I put it to him that the stay in Antrim with IV antibiotics was completely useless and he entirely agreed. So that was 6 days of total waste, being filled with poison that didn’t help me at all and actively weakened my condition, all the while they could have been stenting me in Belfast. Just unbelievable. Also spoke about the 7 week delay and how much worse I am now than then, and I’m YET to meet a freaking oncologist (Vass is a surgeon). It almost seems unreal. Surely I have cause for complaint? But what is actually the point?
He said they would attempt a stent on Monday 10th (so another 6 days), sounds like good news, right? Well, he was was not at all positive about the situation and said that there were absolutely no guarantees it would work given the state of my liver, and even if it did it might not work for long. Sounded like a last ditch attempt to do something.
He also said that I’m clearly currently not fit enough for chemotherapy at this point and looked like he doubted I ever would be. To be honest, I’m not at the moment. I know I’m not. I can barely walk to the bathroom. But I’m 45 years old, you’d think they would fight for me, not just write me off.
We left with no positive plan apart from stent and see on Monday, no direction and no hope. It was truly a miserable and negative affair.
Kerr has sent off the latest CT scan report to Dr Bridgwater and we need to think about what we are doing. On one hand maybe London might give me some hope, but I feel so weak and frankly totally and utterly shit after today that the thought of leaving my home is just so upsetting that I don’t want to. I just want to curl up in a corner.
They also spoke about hospice and pain management and that should be in action by tomorrow. Apparently they come to me. I would like that to happen as I cannot continue to endure like this, the last couple of days have been truly a test of my mettle, and I’ve been found very wanting at times.
I just feel so shocked and defeated, I’m sorry, I feel like they have given up on me. The new CT scan was so awful that I feel like giving up too. I hate saying that as you’re all so supportive and positive, but this has been a truly bleak day. I guess at least maybe the stent, I don’t know, I don’t think I know anything anymore. I don’t really feel I can write anymore just now as I’m crying here and I feel like this has been the most painful of things to write, but maybe it’s better to be real than to be fake positive.