More than just a bag lady

I got a new Hickman line last Friday.  I started to write a blog post on what happened but I just can’t. I’ve tried and tried but every time I try I manage to write a few sentences and then I have to leave it. The whole experience was extremely traumatic and I’ve accepted that for now it’s too difficult for me to write  about in any great detail.  In a nutshell I went down to have a new line put in last Wednesday. Because of issues with my veins after about 20 minutes of trying the procedure had to be abandoned. During those 20 minutes despite lots of local anaesthetic and sedation I was in a lot of pain and found the experience really awful. As a result it was agreed that it would be best if the insertion was done under a general anaesthetic. It should have happened on the Thursday but they had some emergencies in theatre and I got bumped off the list. Any how it happened on Friday afternoon.  I know they must have had some issues putting the line in as before they put me to sleep th

So this just popped up on my Facebook memories… It was 9 years ago today I went down to theatre and had my first J-pouch surgery at St Marks. I was so hopeful that the operation would solve all the problems I had been having with my stoma and give me back some quality of life. Little did I know that it wouldn’t be the end of my journey but rather just the start of another awful chapter.  Knowing what I know now would I still have had the surgery? Honestly, I don’t know. The last 9 years have at times been pretty horrendous. The surgery left me incontinent, in pain, with bowels that don’t work and needing artificial nutrition through a Hickman line. I’ve had multiple bouts of sepsis and more hospital admissions than I could possibly count. But there’s no way any of that could have been predicted by the doctors and surgeons all those years ago. And I was having a pretty tough time trying to get by with a stoma that didn’t want to work which was why I was willing to give the surgery a go.

So Covid and sepsis didn’t kill me but this bloody heatwave might… I have spent lots of time in hospital during the summer months but given that is likely to be the hottest day ever on record then it follows that this is the highest temperature I have ever experienced as an inpatient.  So let me tell you a little bit about where I’m staying. Firstly, let me begin by telling you with absolute certainty that there is NO AIR CONDITIONING here on the wards at QMC in Nottingham. The ward I’m on is on the top floor of the hospital and as we all know, heat rises. The room I’m in is South West facing meaning that it gets the sun shining directly into it from about 11.30am until it goes down, making it  very hot. It’s like trying to sleep in a greenhouse! I’ve been keeping the curtains closed and that helps a little bit but it’s still as hot as the Devil’s armpit.  The windows on the ward have restricted openings, presumably to stop us from throwing ourselves out of them on bad days, but it a

I feel like I’m jinxed. Every time I start feeling a bit better and dare to make plans then the Universe decides it has other ideas and it all goes wrong. It really does feel like my body is trying it’s hardest to kill me, or at the very least kill the last shreds of my sanity that I’m desperately trying to cling to.  During this week it was Big Fella’s birthday. The team on the ward had worked really hard to make it possible for me to have day release from the hospital, juggling the times of my antibiotics to give me the maximum time possible at home and arranging for me to have doses of ketamine (a controlled drug) to take with me.  I had emailed Big Fella’s school to tell them he would be having the day off so that we could have some quality family time together, which has obviously been in short supply over the last 9 weeks of me being in hospital. I had the day all planned out: my IV meds and antibiotics would be finished by lunchtime, Hubby and Big Fella were coming to pick me up