I woke up Friday morning seeing a lot of blood in the fistula bag. On further examination, a deep hole has reopened. As usual I’m devastated. We saw the consultant and he said it was ok, at least he didn’t say ‘it’s fine’. I again expressed my absolute disappointment at what is happening and still cant get my head around it all. He told me I’m thinking too far ahead and in three months everything could look different. He wants me to go home if I want to but I’m just not sure I’m well enough. But again most people leave hospital when they are still unwell as it’s a known fact you recover better at home. But I still have this poison in me, it’s like a cancer burrowing away at me, so I cant see how I will recover as it’s just going to get worse until it’s completely settled. I’m not sure I can stand it here much longer though as it’s soul destroying.
I had a visit yesterday from Rachel, the chaplain. She came out on Friday and spoke to Stephen and I and said she would come back which she did. She’s quirky looking with long pigtails and a sunny smile, probably in her 60s. We had a long chat about everything and nothing, she has such a soft voice I could barely hear her. I told her I felt lost and broken by the events of the last 2 years and she understood having ‘been hit in the face by a plank ‘ a few times herself. She said this will pass and I must look after me now, with rest, meditation, good nutrition and gentle exercise. I did that before though and nothing changed, I never healed. She held my hand and reminded me how loved I am and how I will learn to accept and cope. It’s like a grief she said, because I have lost my health and I have to come to terms with that and this may not be forever. Some people she sees have no hope but I do and I have to cling onto that for my lovely family and friends. I know all of this but still feel overwhelmed by sadness and regret.
I also had a visit from one of the Outreach team – that’s the team that saved me on 9/3 when my lungs failed. I told him I wasn’t sure what had happened and so he explained. The weekend of surgery had left me very very low, my bowel had stopped working and I developed something called ileus so everything was on stop. My liver however continued to produce copious uampunits of bile and they had been aspirating that off my stomach all week via a horrible nasal tube. On the day in question though they didn’t take much off ( I was so ill I cant remember why) and it seems my stomach filled and coupled with my gut on stop, everything pushed up essentially crushing my lungs. The aspirated 2 litres off in intensive care. I felt worse in a way after he told me that as it sounds as if it could have been somehow avoided. I can’t even go there and I really must not tell Stephen, he would be so angry.
Today is Sunday and events have progressed. I developed a fever in the night and the doctor was called – he’s put a Cannula in my hand ready for antibiotics but are awaiting on blood tests. If I need antibiotics I won’t be going home as they last at least 5 days. I’m feeling OK this morning but it’s there in he background. My consultant has said he’ll see me every week in clinic if I want as I think he wants me out of this environment. I want to come home to sleep better and walk a bit, eat better and feel happier. I want to take othe pressure off Stephen who has to drive and continue to run the ship. I want to see my loved ones, it’s the twins birthday onWednesday, they will be so disappointed if I don’t make it, I’ve always been there for them. Plus Cerys who came into our lives at the darkest of times and made the sun shine again ☀️Plus Lyns of course and Chris and Sam who are all waiting. Plus special friends who are encouraging me not to give up and fight on.
So another waiting game – let’s see what today brings. I’m trying not to worry and stress over it all – I’ve just spoken to Lyndsey and she understands I may not be home – she said she’s not a child anymore – to a mum though, they are always children and she’s never off my radar ❤️