Today I have a Broviac fitted, that’s a deeper line that sits in your chest – a bit of a backward step as it confirms I’m going to be on TPN for a while. That terrifies me, the thought of not being able to eat and drink is just awful especially as my family are all foodies and enjoy socialising together. I picture myself as a sad woman who lives in her bedroom hooked up to a drip. But that is negative me. Positive me says it’s likely to be temporary and even if I do have to go home with it, I may still be able to eat and drink small amounts. The thing is at this stage no one really knows. These freaky fistula are all very different, some heal completely, some don’t, some are manageable, some aren’t – everyone is different. My lovely lady consultant came round today ( who I am becoming very fond of) as my main consultant is on annual leave. She holds my hand – her hands are always cold, she is very slim with a lovely smile. She is pleased with how I’m doing generally and says my physiology Is sound. We will get you through this, she says – that means a lot. It gives me the boost I need to get off the bed and go for a walk around the ward. Stephen visits and a friend who loves locally and I can chat quite normally without gasping for breath. A week ago I was on oxygen, and couldn’t talk and walk at the same time. Having never had so much as a chest infection I had no idea about shortness of breath and it’s pretty terrifying.
I also had a CT today which again is frightening. I ask the chatty radiographer about radiation and she said yes there was more than an xray but it’s all relative. She said it was equivalent to a couple of long haul flights. There was a risk of radiation induced cancer 20/30 years down the line. I’d be quite happy to live 20 years after thIs ordeal. She tells me the routine and says I will feel as if I’m peeing myself, but she assures me I’m not. Great. The scan doesn’t take long and I’m back on the ward. I’m apprehensive about the results as judging by the amount of output, I don’t think it will be good news. I had some feedback but was again told it’s more of a base line than anything else, not to expect answers. Disappointed as everyone is already expecting some kind of news.
I chat to friends on line, I’ve become friendly with a neighbour who has been very supportive – most people are very kind and I find comfort in talking sometimes. But in reality no one really understands. Even I and my penchant for Dr Google ( aka Dr Death) had never really heard of a fistula until this nightmare so they don’t really appreciate the complexity of it all.
Tonight I feel exhausted – my eyes ache and I feel so weak so time for bed.
Nasty Nora is now Nice Nora, too late I’m afraid. She upset us at our lowest and that hurt. She kicked Stephen out of the side room because visiting was over as it hadn’t been documented he could stay. Knowing I was very ill and knowing we lived 80 miles away. ‘Those are the rules’ she said. Newly qualified too I’ve since discovered, she won’t make a good nurse. That’s my view anyway.
Make every day count