This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post). It’s my description of today. Because today can get fucked. It’s been a giant, festering turd of a day.
It started at 0645 with MW wanting to go to the toilet. So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet. Cue alarm from the vac machine saying there’s a leak in the vacuum - meaning the dressing has lifted. Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other. The alarm eventually stopped. I got her cleaned up, got *me* cleaned up, and took her back to bed. I managed to get a bit more sleep till the carer arrived.
The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily. They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working. There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.
These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.
The day went sideways about 1230. The GP rang. MW had bloods taken yesterday and this was the follow-up call now the results are in. MW is anaemic. Seriously anaemic. Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets. He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back. It wasn’t a lot of information but enough to start alarm bells ringing. MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on. Surely lightning couldn’t strike twice, could it?
When the GP rang again, his first questions were about MW’s MS, How long had she had it? Is she wheelchair bound? Etc. He was particularly interested in her bowel movements. He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today. Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer. “Is there any blood in her stool? Are you happy for her to have the tests done?” I’m not kidding, I nearly shit myself. Although I deal with affairs on MW’s behalf, I don’t make decisions for her. Especially decisions pertaining to her medical care. I told the GP that MW can, should, and does make those decisions herself. The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests. He’d leave it with me and a nurse would call for the blood.
After the call, I was left not knowing what the hell was going on. This GP had rung twice and left a couple of grenades behind. I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done. After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation. As if we’d not had enough to deal with and overcome. I was scared. I won’t gloss over it. I was very, very scared. What would the spectre of cancer mean for MW? How would she cope if it were confirmed? It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there. Joining all the other neon-lit elephants in the room.
I lost it. I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach. I didn’t know who to turn to for reassurance. I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes. I tried the MS specialist nurse - she’s on annual leave. I rang the MS Society helpline. A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today. She advised me to get back in touch with the GP. First, for reassurance. Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack. It was the final straw that broke my system.
The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea. She could see I was struggling and stayed with MW to keep her occupied. MW was relatively calm, although she’d later admit to being confused by the whole affair. I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again. He agreed to see me later in the afternoon. In the meantime, I tried to calm down enough to help the carer to shower MW. I spent over an hour shaking and crying.
The GP had more information at the appointment. He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel. This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently. The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore. They’ve agreed that MW will go into hospital and have a CT scan to start with. They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests. To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated. GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.
So, the spectre of cancer looms a little less large now. I understand that GPs are duty-bound to be honest in their dealings with patients. I know that our GPs have a large workload and might handle things differently if their workload was less. I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia. The potential of cancer investigations in top of that was something I couldn’t deal with. I’m loathe to criticise medical staff without good cause, just to take frustration out on them. That’s not fair. This blog post is too long now for me to go into specifics but I think this could’ve been handled better. For MW. For me.
I try, as far as I can, to hold it together for MW. I not only have to deal with the logistics of medical service provision - sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time - but I also have to explain to MW what’s going on. I need to comfort her too because she gets scared, gets confused. I can’t do any of that if I’m in pieces. I’m not in the same state as I was this afternoon, nor do I want to be. Because today’s been bad enough. Fuck it.