Letter to my vascular consultant.

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.

Yours sincerely,

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8 thoughts on “Letter to my vascular consultant.

  1. Oh Ron, I’m so sorry that you are having to suffer this pain hour in, hour out 😦 What an awful way to live, and I really do empathise with you on this.

    I so hope that your consultant reads your letter properly and understands what you are telling him. I also hope that he will be able to arrange for pain relief and any other methods of comfort that he can think of. In this day and age no-one should be in constant pain, it’s totally wrong!

    The only way my pain was relieved was through the amputation. No, it hasn’t taken all the pain away as there are other issues with an amputation, however, some people aren’t judged fit enough or strong enough to have a prosthetic and I don’t know what their pain would be like. I *think* that the pain in not being able to use a prosthetic would be less than using one but whichever way it was, that constant pain and infection, and the waiting for yet another infection to happen would all be gone with an amputation.

    I am still on Oramorph now as well as MST Continus, nearly 10 months down the road after my amputation as pain is still unbearable at times. I’m also still on 900mg of Gabapentin 3 times a day and that will probably continue for life. I still suffer severe phantom pain and so bad at times that I just wish that I too could just die. If I was asked now if I thought the amputation would improve my life and take away so many of my worries as well as pain, I would still say “YES” as that part of me was already dead and was causing so many problems that I just couldn’t cope with anymore.

    I’m fingers crossed that you get a consultant who will read into your words and listen and who will invite you to not only see the lymphoma clinics but will also do his best to help you. I pray that your pain will be lifted somehow and that finally you will get the help that you desperately need!

    Be careful.

    Jay x

    • Hi Jay,

      I was very reluctant to mention my GP, but I just couldn’t make it work without including his part in the mess (which I minimised anyway!). His cutting off my Oramorph was a major factor that couldn’t otherwise be explained.

      I don’t understand, though, why Oramorph takes hours to kick in, or sometimes doesn’t kick in at all. (Much of the time all the morphine is pretty useless, but is it the drug or the severity of my pain? Dunno.). I do know that it’s impossible for us to accurately judge our own pain – what’s an inconvenience for one person can be crippling for another, and vice-versa, and each is equally valid.

      Ron.

  2. I’m stuck between rage & weeping to read this Ron, your pragmatism in the midst of this is amazing; I’m, with Jaypot all the way in hoping your consultant reads this and thoroughly and takes immediate and appropriate action.

    I can only add please consider CCing your letter to the complaints section of the relevant trust – it worked for me recently when trying to have my sleep apnoea managed correctly.

    Keeping everything Crossed

    all best as always xx

  3. How could anyone read your letter and not be compelled to respond? Particularly if you are someone with power and expertise to do something ? I echo Jayne and Jaypot’s one hope – that the consultant is shown it personally by his secretary saying ‘I think you should read this’

  4. Peace Ron, can’t think of anything sensible to say, but hope you get help and peace…very best wishes Ron..:-) Elle

  5. I hope the blog hiatus means that you are finally getting effective (and decent) treatment for those demon legs Ron. Sending best wishes

    Lucy

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