After the painfest that was the debriding cloth** last week, I made an executive decision and, last Friday, decided not to change my ulcer dressing.
**I was amazed to discover that some people actually like the things!
There were several reasons for this, not least the fact that I felt so shitty I couldn’t face it (I was due to do it myself). As an unexpected bonus, though, the dressing hadn’t leaked and the pain had largely abated. I was still getting savage breakthrough pain, but the constant, soul-eroding, pain that hasn’t let up for a moment in two years was mostly gone. Well, OK, not truly gone, but subsided to the point where my morphine could deal with it. So I thought, sod it, and left it alone.
Today, it was showdown time – would my leg be green and stinking? Would the ulcer have grown, as it tends to do? And would the dressing, as it was starting to feel, have stuck firmly?
Well, the dressing was a veritable rainbow – including green! But my ulcer was – normal! No smell, it wasn’t stuck and – miracle piled on miracle – it’s shrunk by half a centimetre in length!
As ever, though, the ulcer felt much hotter than the surrounding leg – usually a sign of infection. But then, realisation dawned – the ulcer feels hotter because I’m feeling the raw flesh – the skin is entirely gone from it so it’s bound to feel hotter than the surrounding leg. Anyway, we re-swabbed it to be sure, but the nurse agreed with my skin theory.
And then it was decision time. The ulcer was re-dressed**see footnote and then we had to decide if leaving it for another week was a viable option. We decided it was, so as long as nothing untoward happens, like a leak, it’ll stay in place until Friday.
I’ve given it a good scrub with Octenisan (a bactericidal wound wash), and washed it with hot water, so it’s as clean as it can be.
On a different note, I’m getting very worried about my psychological state – I seem resigned to the “fact” that I’m dying. And, despite putting fact in quotes, I do feel as if I’m right about that. I’m not, at the moment, depressed (when I’m depressed I get suicidal, and I’m not). I also find myself drifting off into hallucinations/daydreams – call them what you will – and this normally only happens when I’m very seriously ill, so much so that I tend to use it as an indicator of how sick I am. Right now it happens a lot. And I’m perpetually exhausted.
No matter how well I sleep – and I’m mostly sleeping very well at the moment – within half an hour of getting up in the morning, I’m fighting to stay awake.
When I go to bed, I go with the intention of reading for an hour or two. This matters a great deal to me – I’ve been doing it since I was a small child (I could read comics by the time I was three, books by 4, had my first library card at 5).
Now, though, I get into bed, fire up my Kindle, tuck into my pot of cottage cheese, and settle down to read. Fat chance – I’m slipping away into sleep in minutes, no matter how much I fight against it, I lose. I can’t tell you how much I resent that!
Put all those things together, though, and the feeling that my body is winding down towards its endgame is unavoidable.
Even if Denial Nurse is right – and she’s not! – if heart failure isn’t killing me then something else is. But nothing else fits the symptoms. If, as I keep on saying, it looks like a duck, walks like a duck, and quacks like a duck – it’s a fucking duck!
Anyway, screw it for now. I’m going to have a couple of pork pies for lunch then get into the kitchen and cobble up a new recipe.
I’ve got two packs of Toulouse-style sausages, which I’m going to make into meatballs, deep-fry them briefly, just to set them, and cook in a rich, meaty – spicy – herby – fruity sauce with mixed bitter and sweet cherries, shallots and root veg. Maybe some shredded spinach too – I like greens in a casserole.
Then while that’s cooking I’ll carry on putting together the “Why I Really Do Have Heart Failure” info pack for the cardio doc on Wednesday. I can’t trust my memory to say everything that needs to be said, so I’ll write it all down in advance.
There will also be an “It Doesn’t Matter Why I’m In This Wheelchair!” page because every time I turn up for an appointment on wheels, I’m asked “Why are you in that wheelchair?” – and we get sidetracked. It doesn’t bloody matter – ignore the wheels. If he saw me on the ward he wouldn’t ask “Why are you in that bed?”.
My wheels don’t matter – I, on the other hand, do!
I think the dressing details are worth mentioning as I’m sure any ulcer sufferers will agree with me that anything that shuts down the pain is worth trying. It remains to be seen whether or not the reduction in size continues.
My dressing, which I devised and the nurses were happy to adopt, is Aquacel Foam, 19.8cm x 14cm overall and the slightly figure-8 shaped foam pad is 14cm x 8.7cm. Sterile but unmedicated.
On top of that, cut to size, slightly larger than my ulcer, is an Aquacel Ag silver-impregnated dressing. I insisted on the bactericidal dressing as I am extremely prone to infection (well, my leg is, at least), and the Tissue Viability Nurse agreed. Last year I had repeated infections in my legs (bilateral lymphoedema), culminating in MRSA which took 10 days and almost 7 litres of i-v Vancomycin to eliminate – damn near killed me.
If there is any discharge from the wound, it will turn black. This is normal and is caused by the oxidation of the silver – it’s tarnished, in other words. This can be worrying and why it’s not mentioned in the PIL I have no idea, but it’s quite normal.
The adhesive border of the Foam doesn’t stick very well at first (the longer it’s on, the tighter it sticks), so I cover it – and my leg from knee to heel – with a double layer of yellow line. The gentle pressure of the yellow line also keeps the dressing in close contact with the wound. It also provides gentle compression for the leg, preventing swelling and reducing pain.
Prior to each dressing change, and using a fresh roll of kitchen towel each time, I swab my leg from knee to toes (avoiding the ulcer), with Octenisan (which has to be left on for 1 minute). While I’m waiting I gently scrub the ulcer with a fresh pad soaked in Octenisan for as long as I can stand the pain, then dunk my leg in a bucket (lined with a bin bag), of warm water, wash off the Octenisan and, using a plastic mug, thoroughly rinse the ulcer. Still hurts, but much less than wiping it off.
I then dry my leg thoroughly – more kitchen towel – making sure to dry the ulcer separately so as not to spread the crap onto sound tissue. The least painful way is to gently press a folded sheet onto the ulcer, hold it for a moment, then peel it off slowly. Then I pick off any obviously loose tissue.
It’s then ready to be redressed when the nurses arrive. Or, if it’s my turn, I’ll do it myself.