The surgery to amputate my right leg, which I’d hoped would have happened by now, clearly isn’t going to, not least because my surgeon has chickened out (while absurdly trying to blame me for “changing my mind”). That is simply not true.
This afternoon I stood up from my wheelchair to go into the kitchen (making soup – see the following post tomorrow) – and promptly greyed out and keeled over backwards.
Apart from the injuries to my back and pelvis from the fall (mostly bruising as far as I can tell, though a similar fall some years ago resulted in a hairline crack in a pelvic cartilage which, while not hugely painful, creaked horribly whenever I moved – at least there is no sense of a break this time).
On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.
I didn’t get one – I got a phone call instead.
In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.
NB: Ulcer photos – don’t click through if squeamish.
I’ve enhanced the colour to make it a bit clearer. The ulcer is mottled yellow, the leg below and the foot above, pink. Between the two, on the left, there’s a semicircle of deeper pink tissue at which the arrows are pointing – that’s blood. Some days it’s more obvious than others.
Warning: Ulcer photos immediately below the line – don’t click through if squeamish.
My GP refuses to give me the drugs I need to control the potentially fatal attacks of Pulmonary Oedema. At least I assume he refuses – it’s hard to tell as he can’t be arsed talking to me about it.
And now I can’t get the correct dressings for my leg ulcer and, without them things could get very nasty very quickly.
Then, a week ago, I started to run out of dressings. I haven’t posted any photos for a while as my ulcer is so gross it sickens even me. And there’s the problem that I need two shots to cover it all, and even then I can’t get the extremities in as it curves around my leg – it’s 20cm end to end, and 10cm top to bottom. it’s only its irregular shape that stops it being 200 square centimetres of raw, suppurating flesh. And this – apologies to those who find them distressing – is what I have to live with. Plus the pain. I cleaned it up a couple of days ago, so it’s not as horrible as it’s been. Still not fun though.
Warning – contains ulcer photos some of you will find gross.
Yesterday – the first for several years – was a day in which pain featured only peripherally, due in no small part to the increase in medication enforced by the vascular surgeon.
That increase – which took an unforgiveable three weeks to get to me via my GP – was immediately followed by an attempt by him to stop my supply of Oramorph. I got it reinstated after dishing out a bollocking that surprised even me, during which he complained that I don’t keep him informed enough – a charge that’s only partly true.
This letter is going to my GP overnight. The title of this post is not hyperbole – if he won’t change his mind I can see no way forward.
Dear Dr. Xxxx,
I have just had a phone call to tell me you have refused to issue a prescription for morphine sulphate solution (Oramorph), as I am over-using it.
I am not.
At the rate of 40ml per day (10ml every 6 hours), a 300ml bottle lasts 7.5 days. The current bottle was started at 18.00 on November 27 – that’s 7 days ago today. I have enough left for tonight and possibly tomorrow. That is not over-use, that is using it as prescribed. And absolutely as needed.
Trigger warning – suicide mentioned.
Next Tuesday morning an event that has taken two years of incessant pleading and nagging will finally happen – I get to meet a vascular surgeon who has expressed a willingness, no doubt hedged about by caveats, to possibly amputate my right leg below the knee.
Actually, that crisis was brought about by an unwillingness on the part of my GP to prescribe effective analgesia. In the end I had to go over his head to the senior partner in the practice. By then it had taken a year.
My GP was – probably still is – convinced that a effective dose of morphine would shut down my breathing reflex. True, it might, but might is a universe away from will, yet he treated me as if possibility equalled certainty, and it does not.
I keep having the same, utterly futile, conversations with my nurses.
Conversation No. 1 – Staff Nurse: “You must agree to compression or your ulcer won’t heal.”
My reply: Assuming I accept that as a given,” (I don’t believe it is – no-one even thinks beyond compression**), “what can you do about the pain, and the fact that it doesn’t work for me?”
**They don’t think outside the box because they don’t even know they’re in a box.
Consider the inconvenient facts:-
New rules sort of apply here – The View from Bed Three. No photos.
Surgery is looking more attractive by the day. Nurses arrived an hour late this morning, no explanation, no apology and – even worse – no supplies. AGAIN!
So I had to raid my hidden, only to be used in the direst emergency stash, meagre though it is. Or was – it’s now gone. And I had to construct a usable dressing by combining 3 separate items. It works, but it shouldn’t have to happen!
And, I’m sorry to say, there was a lot of anger – mine. When they say, at 11.00 “We’ll be there in half an hour” and still haven’t shown up by 12.30 a phone call at some point isn’t an unreasonable expectation, not least because when leg ulcers are exposed to the air they become even more painful than normal. And trust me, normal is something you do not want to experience. As it was I was sat here wetting it down with Prontosan wound wash to keep it moist.