The following letter will by faxed to my vascular consulant at Clatterbridge Hospital, Wirral, on Monday, November 4. If it fails to have the desired effect, I’m screwed:-
Dear Mr. Xxxxxxxx,
I had a telephone call from your secretary some time ago, to the effect that, as I’d cancelled the ultrasound scan at APH, you felt unable to proceed further unless I rearranged it. Let me explain why I can’t do that.
When I saw you, briefly, at Clatterbridge, you asked how I felt about compression – my exact words were that I was prepared to suck it and see. At that moment, I had no idea you planned to go with it immediately or I would have refused.
I’d have refused because – and the smell was a solid clue, as was the fact I was still undergoing antibiotic treatment – I still had an active infection, and compression and infections don’t mix.
However, assuming your nurses knew what they were doing, I let them go ahead. That was my mistake.
By the second week I was in so much pain that I refused to let the district nurses renew the compression, and we reverted to the absorbent dressings as my legs, which had been drying out prior to compression, had begun to leak copiously again and, indeed, still are.
The pain, the mess, and the stink were the reasons I cancelled the scan. Simply having emollient cream applied was too painful to endure; the scan, as described in the letter from APH, would have been unbearable. My life has been dominated by extreme pain since April – pushing me to the brink of suicide on one occasion due to a lack of effective analgesia, a brink from which I have never fully returned – the prospect of someone inflicting more pain on me was simply intolerable (ask your nurses how I reacted to the far less traumatic Doppler prior to compression – and that was on my left (good) leg).
I can barely walk as it is, hence the wheelchair, but I have to be able to at home as my flat is not wheelchair-friendly, and as I live alone I cannot afford to do – or, as in this instance, have done to me – anything that would impair my already borderline ability to look after myself. If I can’t do it, there is no-one else. I almost starved to death earlier this year because I’d become too ill to even feed myself – I am not interested in a repeat performance.
I explained my reasoning, vis-à-vis the pain, to APH – I wasn’t contradicted.
Since I spoke to your secretary, events have taken a turn for the worse. My legs are still infected, with all that this implies, but now the infection has been identified as MRSA. By any measure, this is not good news.
I am, morphine notwithstanding (60mg Zomorph b.d.), still in extreme pain, not helped by my GP’s recent refusal to prescribe further Oramorph (no idea why).
Pressed by the two senior District Nurses, he reinstated the Oramorph, albeit at a 50% lower dose – down to 5ml every 6 hours** – which does nothing (previous dose was 10ml every 4 to 6 hours, which was effective when taken 4-hourly when needed).
** I actually take 10ml at 05.00 to get myself out of bed by 07.00 (Oramorph, for me, takes much longer than normal to kick in), and a further10ml to get through my dressing change later in the day. Any breakthrough pain goes untreated – and there’s a lot – as I don’t know when, or even if, I’ll be getting any more, so I have to eke out what I have.
For most of the time, then, my pain levels are close to intolerable (I wake myself, screaming in agony, at some point more nights than not – god knows what my neighbours must think), and I was hoping you could refer me to a lymphoedema-specific pain clinic (or, at least, one where the severity of lymphoedema pain is thoroughly understood), but it appears that prospect is receding if everything really does hang on that ultrasound scan (which, frankly, given my situation as I’ve explained it, seems unfair).
If there is a pain-free alternative to the scan I would not have any objections at all, but as I hope I’ve adequately explained, and further hope that you can understand, if there is one thing I manifestly do not need in my life it is more pain. I’d rather die.
And no, that is not hyperbole. I’ve been teetering on the ragged edge for months – the first thought to cross my mind, every single day as I struggle to get out of bed, weeping with pain, even with Oramorph (Zomorph, taken at the same time, doesn’t make its presence felt until mid-morning, if I’m lucky), is that I simply want to die.
Even on the extremely rare good (not really, just by comparison), days, the possibility, however remote, that somehow I might have my right leg amputated is all that keeps me going. Trust me, when my only choices come down to amputation or suicide, this is a very bad place for me to be, and not one where I will submit to having even more pain inflicted upon me, with the concomitant risks of my condition being made much worse. The consequences would be terminal.