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...

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...

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 ...

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 p...

Let’s talk about Candida. Although it sounds like the name of sex worker who might leave her calling card in a London phone booth it is in fact one of 4 bugs that have grown in my Hickman line and by far the most serious. Candida  is a fungal infection that is yeast based and it’s nasty little spores can migrate round your bloodstream and settle in various places in the body, potentially causing havoc. In my head I imagine them to be a bit like when you pick a dandelion and blow and the little fluffy bits catch the wind and off they go. The places they like to set up home are the heart, brain, eyes and bones so this week I’ve been having various tests to check whether this has happened or not.  On Tuesday I had an Echocardiogram to check that there was no infection in my heart. Except nobody told me it was happening so imagine my surprise when a random bloke wheels in this machine to my room and tells me to strip off from the waist up!  The only reason I happily complied ...

God, this weekend has been hard. Not so much physically but emotionally and mentally. It started with Hubby sending me this photo on Friday… Somehow over the last couple of years he’s managed to dodge it but the dreaded Covid had finally caught up with him for the first time. And although Covid isn’t really a ‘thing’ in the real world any more, in hospital it still very much is, so of course, this meant that he wasn’t able to come and visit on Sunday with the kids like he always does.  I found out on Thursday that my Hickman line was going to need to come out but I was hoping that it would all be done and I would have a shiny new one in time for Big Fella’s birthday at the end of the month. But I was talking with one of the nurses about it on Saturday and when I said that she told me that there would be no way I would be discharged within the next 2 weeks. Apparently waiting lists for line insertions and excisions are the longest they’ve ever been and she said that although she fel...

I’ve not managed to write my blog post about the Jubilee bank holiday weekend. The short story is that I was due to be discharged on the bank holiday Thursday but took really poorly. I thought I would miss going to London for the Platinum Party at the Palace on the Saturday night but the doctors and nurses were determined I should go and somehow got me well enough. I then spent days in bed recovering but my goodness was it worth it! There’s obviously a longer story and I’m working on it but if you read on you’ll find out why I’ve not managed to write it yet!  A week after the bank holiday Thursday I developed a very high temperature of nearly 40 degrees, had rigours, vomiting and pains all over my body. As usual this was lousy timing as I had been starting to feel better and was supposed to be discharged the next day.  The doctors assumed it was the second dose of Adalimumab that I had received the day before that had caused me to have these symptoms but to be on the safe side...