Hospital Holiday : Zero Stars, Definitely Not Recommended
I just wanted to drop a very quick message here. I might delete it in future as it’s not a “proper” post. I’m sorry for going MIA for a little while – I ended up having to get a taxi back to A&E last week and spend a few days in hospital with a twisted small bowel and non-working stoma again. Seriously, my insides just love to dance so much they won’t listen to me when I tell them to stop!
I had a pretty awful experience in there, which is the same hospital I went to back in December, when I swore I’d never return. But my local A&E is still shut and I was very desperate as I’d put up with excruciating pain for 10 hours before I knew I had to go in. It’s like being knifed rapidly from the inside out over and over again, or at least what I imagine that would feel like if you had a tiny Borrower inside you hacking away with a kitchen knife.
The experience in hospital seemed to break me. The more upset I got, the more I couldn’t advocate for myself. I felt I wasn’t getting the promised proper pain relief or any adequate help for the twisting. But it was the treatment from staff that just seemed to tip me over. Misanthropic nurses who seem to dislike people. Nurses that never come back. Nurses that do things even though you ask them not to, like when they’re shoving an NG tube down your nose and you can’t breathe.
When the NG tube was removed, a gush of blood came out of my nose, then I started coughing up blood. I soaked three tissues in blood, then spotted a fourth with the remainder. The nurse had gone out to get a doctor, but never returned. That happened a lot. Thankfully the bleeding stopped. Another told me that “it wasn’t a prison so I should probably just leave” because I “certainly wasn’t an emergency or a priority”, though I never suggested I was. I’m pretty sure I didn’t say anything to that nurse because I was so busy being sick and crying in between.
I’d just hit breaking point after a few days and couldn’t take it anymore. I requested to self-discharge and then a doctor came to see me (perhaps the same one I was promised would see me 10 hours prior to that). He spoke to me like a child, having me repeat all the awful things he told me could happen if I leave; bowel rupture requiring a huge operation, three months in hospital, very poorly, kidney failure, death. I get the picture. But I would rather have died than stayed any longer in that hospital, and that’s not an over-exaggeration, that’s how I genuinely felt. I of course wouldn’t recommend self-discharge against medical advice. I just couldn’t take any more.
I did learn something interesting, however. Patients were being swabbed twice; once for covid, once for Covid antibodies. Upon getting the results, a nurse moved me out of one place and into the middle of another ward. Apparently I had antibodies (hurrah!) after the two vaccinations, so those with antibodies go to the parts of the wards deemed more high risk, like the middle between other patients.
Patient Care : It’s Not All Rainbows
We hear so much about ‘angel nurses’ and it feels almost traitorous to dare say anything to the contrary. There must be some incredible NHS staff, as well as staff in other hospitals and other countries. I’ve certainly had some lovely technicians for scans and such, but honestly? I’ve found a vast majority of hospital staff have been rather less than angelic. I’d already spent years being fobbed off by doctors and specialists so now all I’d want as a patient is the minimum in a nurse or doctor; an efficient job, somewhat polite, no more. That would be absolutely fine. But what I seem to experience a lot of the time, and what I’ve seen others experience in beds around me, has been pretty awful.
The problem is, even the simplest or smallest of slights can be significant to a patient; patients are very poorly, they’re alone, they’re vulnerable and they just need to be looked after or feel like someone cares. That’s all. Just a touch of compassion.
Rainbows and banners have been going up in praise of NHS nurses as the pandemic heroes, alongside increased pressure for a higher increase for nurse wages on top of what they’ve been offered. Some agree with this, some disagree. But it’s really not all rainbows; I sometimes feel I’m experiencing another world to what I see in the media.
These issues, for instance where you get some (or many) nightmare nurses, have far preceded the pandemic. Most patients understand stress, having a bad day, being busy, how challenging the job must be. This goes far beyond any of that.
When I was in the hospital bed, I remember looking at the window and thinking about how high up the building was; I was too scared to consider jumping out in case the fall didn’t kill me and they brought me back in. I’ve felt unnaturally desperate in hospital before because of how I’d been treated, like in 2019 when I eventually needed emergency surgery. Again, no over-exaggeration, just honesty in those raw moments. It all builds up, you’re too exhausted, and something breaks.
I’m not prone to hysterics, I don’t get upset super easily, I don’t expect or want red carpet treatment. Of course this could be compared to other countries where there’s no adequate healthcare at all, but to compare would be to invalidate the experiences of those in similar situations, because I know I won’t be the only one to have had poor experiences. This is just what happens when you are poorly and feel like you’re not being supported even in the bare basics.
I feel I could be hung up and quartered for saying these things and that’s not a slight on the profession by any means nor on any one person. I am, and always will be, grateful for the amazing staff there are when you find them, and for the healthcare generally that we’re fortunate to have here and in this day and age.
It’s just my honest experience, and it’s worrying.
Hospital Holiday : The Return Leg
I got a taxi home and while grateful to be back, I couldn’t be too happy about it because I knew things weren’t right, I wanted help, and I was wondering whether I’d have to die quietly at home or get back into another taxi to a different A&E further away. If so, there was definitely no way I would get around to shaving my legs in the state I was in. Damn. Fortunately, I think my small bowel is starting to straighten out a little so I’m keeping my fingers crossed that’s it for now.
I’ve still got a urinary catheter in for a few more days yet because of my dodgy nerve damage so at least I can drink as much tea as I want without having to get up to pee. Silver linings, eh?
I realise I’ll have to consider surgery now, but it’s not something I can bring myself to seriously think about. I was waiting for major surgery in April of last year for something else until the pandemic came along, and I don’t know what’s happening with that now. To add another one now for this twisting – a big surgery to pull everything out and remove adhesions and push it all back in again before reforming the stoma – makes me feel sick just contemplating it.
We Can All Break
There are many, many people who have things far worse than I do. I know on here some people think I’m strong, but I’m being honest here to show that actually I can crack pretty easily when in so much pain and so unwell, when staff treat you like you’re a piece of crap or like they can’t be bothered to deal with you. I always talk about advocating for yourself, but I know how incredibly difficult that can be at the best of times, and harder still when times are so challenging. Without anyone with you in hospital it can feel all that much more isolating and harder without any back-up to get your opinion across or stand up for yourself.
I’m fortunate to know lots of wonderful people online, in the blogging realm and through a connection of other incredible ladies with some things in common in our medical journeys. I cherish every single one. I absolutely think that online friendships and support count for a lot, so if ever you feel you’re struggling, please do reach out to someone, somewhere.
Home Sweet Home
I’m now so, so glad to be home. Already the small niggles and stresses, along with the bigger ones, are creeping back in. I was ridiculously overwhelmed and stressed before I wet into hospital and when I was in there, much like every time it’s happened, I vow something has to give. But it’s a short-lived feeling before I get caught up again again in the guilt-busy-stress cycle that so many experience, with or without chronic illness and pain.
Of course, everything that can go wrong then does seem to go wrong. Replacement phone doesn’t work and has to go back; my car’s on it’s last legs and I’m finding it hard to find a replacement and I’m not well enough to drive far; problems with my blog with messages saying I’m offline or that it the server’s not responding and it’s driving me up the wall; I need to do grocery shopping for my folks but I’m struggling to walk and at risk of all these plastic bags on me getting stuck together in this warmer weather or of strangling myself with the cord of the catheter bag.
Unsurprisingly, my cat hasn’t noticed my absence. I haven’t been able to pick Virgil up yet because of my tummy but I’m looking forward to giving him a cuddle, even just so he can squirm away from me (a sure of love, no?). For now, him brushing across my legs and covering my trousers in enough hair to make a Dolly Parton wig will be his way of saying he loves me. Or that he wants more food, which I suppose is exactly the same thing.
There’s no need for comments so please don’t feel obliged in the slightest. I’m absolutely not looking for sympathy and I don’t want to bring anyone else down, either. I just wanted to update and let people know why I’ve not been around much as I always feel so bad not supporting other bloggers or replying to emails in a timely fashion. I have a review post to publish this week and I’ll aim to do more in the blogging world and on emails, but it may not be as much for a little while.
It was actually a little cathartic to get some of this out, albeit just in a rush. There’s a degree of frustration that builds knowing all of this is happening just because of the first surgery in 2015, which is hard not to think about sometimes. I’ve not checked thoroughly through this post so please excuse any errors. Again, I’m very sorry for delays or not commenting/sharing other posts the past few days.
Right, I’m off to find the cat for an awkward cuddle he clearly doesn’t want but it going to get regardless.
Sending lots of love to you all. Take good care of yourselves.