I’m recording this here mainly in self-defence, because my legs have taken a turn for the worse and the nurses refuse to accept that this is as bad as I believe it is. For me it’s not a belief issue – I can plainly see that all is not well.
On the left ankle, the shiny area is raw flesh, where the skin has eroded under compression bandages with which, for now, at least, I have refused to continue. On Sunday, that area was the size of a 10p coin – that it is now so much larger, 11cm x 9cm, approx, indicates that something has gone badly wrong.
On the right leg, just below the knee, you can see another eroded red patch, 9cm x 7cm. That has been there for some time but was less severe and more diffuse. Now it has become much more severe since Sunday. More severe, but smaller; in nurse world that apparently equates to better. In the real world it’s a bloody sight worse.
When I saw how bad things had become, added to the severe burning pain and the interminable itching which has got steadily worse since the compression was first applied a week ago yesterday, I decided that, until these areas heal, I would discontinue compression.
The auxiliary nurse had been delegated to remove the old bandages and apply the base layers of bandages and padding before the staff nurse arrived to apply the compression layers.
I said, politely, that I was having no more compression until I’d healed, which wasn’t well received, and the aux nurse went off to consult with the staff nurse who was with one of my neighbours upstairs. She came back with instructions to carry on as she’d been instructed!
I asked – still polite but fading fast – what part of “No compression” we were having problems with, as it wasn’t going to happen.
Off she went again to talk to the staff nurse, bemoaning the fact that she had to go upstairs. I suggested that since the staff nurse was coming to see me anyway, there was nothing to be gained by trekking off upstairs again, but off she went.
Staff nurse arrived.
Now she was here on Sunday, and was unnecessarily hostile for some reason, so I’d already decided I wasn’t taking any crap from her. And she gets ready to apply the fucking compression!
I said No!
“Are you refusing treatment?”
“No, I’m refusing compression until these lesions heal. We can revert to the standard treatment and come back to compression later.”
“There’s nothing wrong with your legs – all the nurses say they’re getting better!
“They were – they certainly aren’t now – I’m going backwards, not improving!”
“But nothing – look at my damn legs – those lesions were tiny just2 days ago.”
Turns to aux nurse “Was there anything on the dressings?”
Explosion of disbelief and exasperation from your scribe!
Luckily, I still have the dressings – the photo is the part from my left foot/ankle. Apparently bloodstains equate to nothing in District Nurse Land! Where there’s a natural crease in front of the ankle, the skin has split and it’s penetrated into the flesh, hence the blood. Staff nurse sees this as not a problem!
And the dressings from my right leg were wet – this is also not “nothing”.
The shiny, wet, red erosions are caused by lymphatic fluid, which is corrosive , and the compression bandages hold it tight against the skin, which is seriously bad news as it can dissolve the skin and eat into the flesh, which hurts like a bastard – another reason for suspending compression. and also for not having the ultrasound scan.
After further exchanges of pleasantries, I pointed out that compression had only ever been experimental. The consultant asked me how I felt about it, I said I was willing to suck it and see. He said, “Good man, that’s what I like to hear!” patted me on the shoulder and wandered off. That was the last I saw of him, which was unfortunate as there was a lot I needed to say to him.
The important thing, though, is that the compression was just on a trial basis – that’s what suck it and see means – and that was quite clear to the consultant. That he apparently didn’t tell the nurses – does he repeat every conversation with patients verbatim? I seriously doubt it – was cause for griping. Sod that – the fact that I’m telling them should be good enough.
I also made it clear that I felt that burying lesions deep under compression bandages for days, which made it impossible to see if they were getting better or worse, or even if they were infected, was a long way from being a good idea. Not well received, but as my legs have been infected for most of the past 6 months, not a risk I’m willing to take. As my GP so charmlessly pointed out, an infection could kill me.
There’s something else that worries me too. On several occasions, the nurses, when describing my problems to a third party – as it might be, the tissue viability nurse – have clearly been describing ,well, not me!
It’s understandable, as they see dozens of patients in a week, and it’s quite impossible to remember everyone in detail. I, on the other hand, have to remember only what I feel and what I see – so who’s likely to have the clearest memory? Yep, me. And it’s the same for any patient who actually pays attention (though based on what I saw in hospital, that’s damn few!).
The problem is that the nurses’ recollections are treated as gospel, and mine generally ignored. Hell, I’m just the patient, what do I know! And that can get dangerous as well as infuriating.
So, in future, photographs, previously only taken occasionally, will become routine, then I will have visual evidence and who remembers what won’t matter as much.
The other thing is that it appears no-one ever disagrees with the nurses, and that they are so used to getting their own way that they simply don’t have what I’d consider a normal response when someone – like me – opposes them. I found this in hospital too, when I introduced a limit on how many holes they were allowed to poke in me without finding blood (two, and then only briefly, not spend five minutes – as has been done – futilely poking about in the same hole).
But I digress. When balked, the reaction was anger. That’s wrong on so many levels.
I understand the frustration, but surely if a patient, like me, who has so far gone along with everything they’ve thrown at me, no matter how painful or inconvenient, suddenly balks and refuses to budge, it’s their duty is to find out why (starting with the assumption that there’s probably a good reason isn’t a bad idea), and address the problem, not sulk like a spoiled brat and take it as a personal affront! My legs – my choice. Patients’ rights trump petulance every time.
One final comment about leaks and compression. I’ve asked on several occasions what would happen to the leaks, and the stock answer is “Oh, they’ll be pushed back into the body!” To which I say “Surely they’ll simply take the line of least resistance, which isn’t to be forced back against gravity and against the outward flow, but to use the channels already created?”
Blank looks all round.
And it should always be born in mind that every patient is different, and what works for most patients almost certainly will not work for all. There will always be exceptions, and the system has to be flexible enough to accommodate them (us).