A letter to my vascular surgeon…

>Trigger warning – suicide.<

 

Who, depending on his response, might soon become my former vascular surgeon. Doctors’ names have been redacted, no matter how justified I might be in publishing them – I still need them so would rather not piss them off just yet.

 

Dear Mr. Vascular Surgeon,

Re: Morphine Sulphate Oral Solution (Oramorph, for the sake of brevity),

and Zomorph.

In response to your request, my Zomorph was increased to 130mg b.d. after my last appointment. I am finding, however, that the expected reduction in pain and, thus, in my Oramorph consumption, is elusive.

I keep daily records of my consumption and while, overall, I have managed a reduction it is clearly not as great as Dr. GP appears to expect,** and my most recent bottle bears the an exhortation to take it “only now if ABSOLUTELY necessary as the Zomorph dose has been substantially increased,” which, I assume, is not the work of the pharmacist and in response to which all I can say is that is the ONLY REASON I EVER TAKE IT! And as I’ve said, Zomorph is taken 12-hourly, but is out of my system in 8 to 10 hours – the size of the dose has had no effect on that.

**Nor is it as great as I would like – but it is what it is – nothing is perfect and individual response can vary widely. Hell, my own response varies from day to day. There is a lot more wrong with me that this leg ulcer, and the other drugs I’m taking might well influence how effective morphine, or any other analgesic, is. I can research one to one drug interactions, but interactions en masse are impossible to quantify, though they must happen.

My problem is that initially, after the increase in Zomorph to 130mg, I did experience a reduction in pain, which was reflected in a reduction in my Oramorph use (for a few days I got down to two doses, morning and night, and on one landmark day, just one dose at bedtime). This did not last. The reason for that, at least in part (and probably a large part), is the ever-increasing growth of my leg ulcer – the bigger it gets, the worse the pain. Right now 10ml of Oramorph every 4 hours (as per the protocol – and I am aware of the risks with COPD), would be more appropriate.

I have to say – and please don’t mistake desperation for melodrama – that I simply cannot live with this level of pain, and it is inhuman to expect me to, yet I live with the constant fear that my supply of Oramorph might be cut off at any moment. It has been tried – the threat is always there.

My pain comes in three distinct stages. In the morning, once out of bed it is absolutely beyond the pale and I can barely walk to the living room (I’m in the process of making my bedroom wheelchair-accessible, which I hope will help, but due to the constraints of my multiple health problems it’s going very slowly).

I seem to have missed the old man’s curse of having to get up to urinate several times a night, but I occasionally have to do so at around 05.30. That sets off a monstrous bout of pain and nothing will stop it except a dose of Oramorph. Going back to bed doesn’t work, it just gets worse, and, occasionally, Oramorph doesn’t work either.

Pain between morning and evening is sometimes manageable but more often than not it still needs at least one dose of Oramorph around midday, and it begins to rise again around 20.00 and, by 22.00 is as bad as it is at the start of the day. Or worse. This is why it’s impossible to get below 3 doses a day consistently.

As I believe I said to you, the only way I can reduce my pain to a tolerable level (assuming current levels of Zomorph and Oramorph), is to stay off my feet and undertake no physical activity whatsoever which requires me to stand or walk. And that is quite impossible as I live alone. Anything that needs to be done has to be done by me. Even getting washed and shaved is impossible most days though this week my bathroom is being converted to a wheelchair-friendly wet room, which will get around that problem.

And then there’s the difficulty of dressing changes, which always ramp up my pain to intolerable levels (very common I’m told by the nurses). We (the nurses and I), have been able to show that daily changes are beneficial and appear to be promoting a degree of healing. The problem is that, because of the pain factor, daily changes are mostly impossible as I simply do not have sufficient Oramorph to treat the excessive increase in pain that this causes. Currently, after a dressing change it can take 36 hours for the pain to subside to a level that is barely tolerable even with Oramorph. As I see it the solution to this problem is simple – give me the Oramorph I need to deal with my pain and trust me to use it responsibly. My future, my very life, is at stake here.

I feel very strongly that given my current level of Zomorph and a freer hand with Oramorph, with the option, only if needed, to either increase the dose to 20ml/40mg (dispensed in APH without the slightest effect on my COPD), or the frequency to 10ml/20mg 4-hourly which is my preference (I’m not an idiot, I’m not going to accidentally kill myself with an overdose), I should be able to manage my pain much more efficiently.

It’s also worth emphasising that my ulcer is not, by any means, the only painful condition I have, though it is by a considerable margin the worst. I also have FMS, OA (both hips, left one since my early 30s), M.E., Shoulder damage from long-term crutch and wheelchair use, Long-term and widespread damage from being struck by lightning in 1983 and, of course, often overlooked/ignored, COPD. (See, inter alia, BMJ Open 2014;4:e005898 doi:10.1136/bmjopen-2014-005898)

Please be aware that if I am, despite everything I have said here, denied the means with which to control my pain I will not – I cannot – live with it, I will end my life.

This is not a bluff, or depression (I am depressed – who wouldn’t be in my position? – but depression is not speaking for me), or a crude attempt at blackmail. It is simply a statement of fact. I decided some time ago that if my existence became intolerable, and I became a burden to myself or others, then I would opt out. At the time that point was thought to be far in the future. That is no longer the case as it is being forced upon me.

Yours sincerely,

 

Ronald W. Graves.

PS: Important note: I suffer from M.E. This causes an often high degree of aphasia, among much else that blights my life, and makes verbal communication very difficult.

I am still at a loss as to why you think I changed my mind about amputation. I did say, after we’d discussed the possibility of a phantom limb leaving me still with my current pain after surgery, or my death from post-op pneumonia, that we should maybe explore other avenues. That’s not a change of mind, it’s casting the net wider as amputation is no longer the safe choice I thought it was. It’s still on my personal agenda though, even though, as I said, it scares the hell out of me.

I know you favour compression, but as even the cobweb-light dressings I currently use, and the very gentle degree of compression afforded by “Yellow Line” cause me dreadful pain, I see no way that compression can even be contemplated at this time.

I have an appointment with Mr. Other Vascular Surgeon at 08.30, August 31. I’ve written to APH to tell them that it is quite impossible for me to keep such an early appointment. At that hour I’m not even mobile.

N.B. – Lymphoedema is showing signs of a return.

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4 thoughts on “A letter to my vascular surgeon…

  1. Your openness and bravery astounds and humbles me Ron
    As always I send every good wish for even one improvement in the cycle of agony xx

  2. Sorry must havemissed your email. You know what your at I dont know anyone who is more clued up than you. I can’t see how anyone can or will ignore  this email Ron Michellex

    Sent from Samsung Mobile

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