Honey I'm home

Laying in my bed at home, I'm reflecting on my hospital experience. I have to say it was extremely hard mentally. I've been in and out so much that I now cannot cope in a hospital environment.

I have 3 days of antibiotics, then my Hickman line got taken out. I didn't see a consultant until briefly yesterday. He is very rude. I was going on a few hours out yesterday anyway but the day before I met him in the corridor and ask if he could see me before I left. His reply was ' I'll see the sick people first'. Charming

When I saw him yesterday he asked there was something wrong with my aseptic technique as I didn't get infections when I had the nurses.

So after a week of not knowing what is going on I felt incredibly alone. From day one I asked to see a counsellor as I wasn't coping in there but she/he never came.

I saw the dietician just before coming home yesterday and she was lovely. Said a lot of people with my condition have frequent infections for some reason. It's just one of those things.

I have made the tough decision not to have another Hickman line placed. I wanted to discuss my options with a consultant but there was no one so I was on my own with the decision. My reasons are that I can't keep living my life in limbo waiting for the next infection. I haven't been tube free in about 2 and half years so it's a new thing for my body. Mentally I can't cope at the moment with the procedure.

Coming to terms with being on tpn is hard. It's a lot different to tube feeds as it's life or death if you get a bug in your line. There is no emotional support. This is why I've said no more. I want some time to be me and get my head sorted out. I see a private counsellor soon which I'm looking forward to.

It's not going to be easy but I will have weekly blood tests to keep on top of things. The hospital said I can ring anytime. It might not work and I may have to go back on it but at least I can say I've tried.