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 they took blood cultures from my line and my cannula. Never in a million years did I expect them to come back and tell me I had got an infection in my Hickman line. Aside from feeling really unwell I just felt so deflated. It feels like every time I get close to going home something else happens and I’m right back at square one.
I had been feeling so good prior to developing the infection; it felt like I had finally turned a corner. I had the second dose of Adalimumab, this time 80mg in two syringes, and I was feeling hopeful that this drug might actually be having some effect on my bowel disease.
I had administered the adalimumab injections myself, ready to do it fortnightly at home. I was excited to be finally going home. But the universe obviously had other ideas.
After being told I had an infection in my Hickman line there began the usual discussions over which antibiotics would be used to treat it. I’m allergic to a lot of antibiotics and some of them cause anaphylaxis, a severe allergic reaction that can be life threatening. So the options are limited. The junior doctor on the ward had multiple conversations with microbiology and eventually they settled on Teicoplanin twice a day.
As a result of the line being infected it cannot be used which means I’m unable to have my TPN feeds. This is because the feeds have to go through a central line (like a Hickman, Picc or Jugular line) and can’t go through a normal cannula. So instead of being fed they’re giving me two litres of saline instead. Obviously this will keep me alive and hydrated but there are no calories or nutrition in it. So I’m hungry. And not just a bit hungry. Bloody starving, ravenous, famished… you get the idea.
I’m trying hard not to eat because if I do the pain will be unbearable so I’ve been sucking hard boiled sweets and sipping on herbal tea. But there have been times I’ve given in and I almost instantly regret it. If I’m going to eat I’ve tried to stick to ‘safe’ foods like a plain cheese sandwich, quavers or dairylea on crackers but even these have caused me problems. And I’m not having large portions- 2 crackers and 1 cheese triangle has been enough to have me crying 2 hours later.
As a result my pain levels have gone off the scale. So on Tuesdays ward round the ward Sister suggested that they got the pain team to come and visit me. We are all very mindful that this time last year I spent the best part of 2 months detoxing from the mega doses of fentanyl and other painkillers I had been on for years so the last thing we want is to head down that road again. But equally I can’t be left in so much pain I’m unable to walk.
And yes, I know that part of the answer is to not eat anything, which most days I’m doing, but I challenge you to try going days or weeks without eating or getting any form of nutrition. It’s a bit like when you go on a night out with your mates and work your way through the cocktail menu; it’s fun while you do it but at the back of your mind you know you’re going to pay for it the next day. But that doesn’t stop you from doing it does it? This is part of the problem with this illness- it’s a bit of a head fuck and unfortunately there’s very little support out there to help with that. So I just try to muddle through the best I can which means occasionally doing stuff that I know I will pay for down the line.
So the guy from the pain team came and after a long discussion I agreed to start on Ketamine. Yep, a nice bit of Special K! Sadly the doses are too low for me to be getting in the party spirit but they should help to control the pain. Ketamine works in a completely different way to opioids by working with different pain receptors so they’re hoping that it will help to get on top of the pain in the short term.
On Wednesday they repeated blood cultures to see if 7 days of Teicoplanin had done the job but on Thursday the consultant came to see me to tell me that the lab had grown not only 2 different strains of bacteria but also a Candida (yeast) infection. I couldn’t believe it as this is literally what happened this time last year, almost to the day! It’s like I’m stuck in some fucked up version of Groundhog Day. And exactly the same as last year I was told that although they would start a new antibiotic to treat the yeast infection it wouldn’t clear it up completely so my Hickman line would have to be removed.
My worst fear was realised.
Having the line out isn’t too bad, it’s the fact that then a new one has to go in!
The last 2 line insertions have been so traumatic that I feel sick at the thought of having to go through it again. I told the doctors that and asked if I would be able to have it inserted under a general anaesthetic but there are such limited slots available it could cause me to be stuck in hospital for weeks and weeks while I waited for one. It’s Big Fella’s birthday at the end of the month and last year we celebrated it in the hospital day room and I’m determined that he’s not going to have to do that again this year. So that means I’m going to have to grit my teeth and go through what I know will be a painful and distressing line insertion to give myself the best shot of getting home in time for his birthday. The things a Mum will do for their kids eh?
But I have no idea when the line will come out, let alone a new one go in. Lines going in and out is done in Interventional Radiology and they don’t work on weekends, unless it’s an emergency. So I’ve got to wait to get a slot to get the line out, then have blood cultures done again and these have to cone back negative for any infection before I can go on the waiting list to get a slot to get a line out in. I think it’s going to be tight but I’m clinging onto the hope that I will wake up in my own bed on the morning of my son’s birthday so I can see him open his cards and presents and blow his candles out.
In other news last Sunday the whole ward got new beds. Every single bed got stripped, wheeled out and replaced with a brand new shiny model. I really felt for the nurses as they were already short staffed and then had that to deal with too. We were excited to see what the new beds were like but to be honest they are pretty much identical to the old beds, except the control panel is slightly different so it was all a bit of a let down!
The only other thing to happen this week was that I had an outpatient appointment at the Treatment centre to see the gynaecologist and get my injection that keeps me in menopause. This is to treat the endometriosis until I finally get my surgery done and get my ovaries removed. It was a lovely sunny morning and even though I was in pain I thought I would be ok to walk over there as it’s literally next door to the main hospital. But a journey that would normally take less than 10 minutes took me nearly 25 as I had to keep stopping to catch my breath and the pain caused me to walk at the pace of an 80 year old that was waiting for a new hip!
Luckily there wasn’t a 90 minute wait like last time so I was seen quickly, got jabbed in the bum and was ready to head back. But the nurse who had seen me in clinic said there was no way she was letting me walk back on my own as I looked like I might collapse at any minute. Normally I would have dismissed her and said “I’m fine, I’m fine” but the truth was that I actually felt like my legs might give way on me so knew I needed her help.
So as I shuffled back across the tram stop and along the bridge to the hospital she walked with me and when we got inside she found a wheelchair and plonked me on it. I was so grateful for her kindness and was lucky that she was the kind of nurse not to turn a blind eye to make her life easier. Sometimes the best care someone can give you isn’t pain relief or anything medical, it’s their time, their kindness and their compassion.
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