Real Pain After Fifteen Years

The last three weeks we've had a fairly torrid time adjusting to some real pain from my cancer. It came on quite suddenly just after having my 'flu jab. (Really? Well, that's when it came...) For a time we thought I might have strained my back but the pain quickly went to my pelvis, thigh and down my left leg. And it was continuous. Not to be compared with tetany spasms (my personal definition of the worst pain ever) but definitely very uncomfortable for sitting or lying around.

I already have an appointment for radiotherapy which may reduce the pain. So, in the interim, we embarked on a DIY programme of pain management. Not very successful, actually. I'd taken Paracetamol plenty of times before but hadn't really paid attention to exactly the conditions under which it should be taken. Voltaren also required more sophisticated administration than I allowed. And a little adventure with Metformin, to reduce the blood sugar levels that had been elevated by Abiraterone was an outstanding gastric blowout of a totally unexpected nature. Goodness knows what other interactions are going on with my other three or four meds...

We are now reading the fine print a little more carefully and trying to get all these things into a routine which doesn't allow one med to fight with the other.  With varying success, I may say. So we are looking forward to a meeting with our Radio Oncologist this week to discuss radiotherapy and then a session with my GP to get any subsequent pain into a properly managed programme.

Battle with Cancer?

As my cancer is beginning to make itself known I am interested to look back fourteen or so years to something that I wrote after surgery. I think it was for my recently-expired website. The theme seems all the more relevant now that I am actually feeling pain.

A year after surgery, when it became apparent that my prostate operation had not been completely successful I was shown an article by Christopher Newell of Tasmania and Christine Newman of Rotorua. In it she insisted that she wasn’t “having a battle with cancer”, she was simply a “person who has cancer”. It was, she said, part of herself and she celebrated herself. 

Christine wrote - 

To embrace my cancer

is to take life moment by moment and to see it in all its glory.

To embrace my cancer

is to see life from a bigger perspective rather than my own little world.

To embrace my cancer is to know
            That my days are numbered,

That I had better get on with things in life that matter,

That I should view life as a treasure not to be wasted

and through all these things, to no longer fear if a tumour appears.

Embracing my cancer

for me brings freedom and acceptance, not fear and rejection.

Embracing my cancer

sees not Satan at work but a God who is in control, no matter what...

I am not quite sure about the "God in control" bit, but I still find her views extremely  helpful.

A Challenge to Hospice

 Three or so years ago our local hospice ran an appeal based on the claim that some of their patients were dying in pain because there was not enough money to buy effective medication. The appeal letter could not be found when I asked for a copy a few months later. And, of course, it was not entirely factual. A year or so later the then Prime Minister asserted that “We don’t need Voluntary Euthanasia; we have hospice”. 

That, too, was a bit naive. We know now—as I personally found out after surgery a few years ago— that not all pain can be controlled. Indeed the World Health Organisation suggests that up to 25% of pain may be untreatable. So the palliative care movement cannot be expected to deal with all pain. And the dilemma for the hospice movement is what can they do with patients who unhappily fall into that category?

My answer would be that hospice should think about embracing the medical aid in dying movement for such patients as wish to avail themselves of it. I know all the traditional Hospice arguments against such a course. It would involve a sea change of thinking. But studying the values and aims of the hospice movement I can now point to a lot of hospice principles that could be honoured by taking palliative care to its logical conclusion in every case, instead of only in five out of six patients.

Respect, dignity and compassion are values that apply as well to a good programme of medical aid in dying as they do to palliative care. And, perhaps, at the end, for some people for whom pain is uncontrolled and who choose for another option, they apply more to the former than the latter.

Where could we find a more appropriate organisation to offer the qualities of nursing and pastoral care, support and judgment that will be required when Parliament has passed an appropriate law?