November 2008

I have had the spinal catheter (intrathecal as the doctor's call it) for a few months now. A 250ml cassette containing 200mg of morphine and 0.25% solution of a local anaesthetic called bipuvacaine is attached to a small(ish) electric pump that sends the solution directly into my spinal fluid. I can control both the hourly rate at which it flows, and give myself a sudden "boost" of juice if I need to.
In addition, I am taking some oral medication: oxycodone, in both liquid (fast relief) and tablet (modified release) form, amitryptaline, paracetamol and ibuprofen.
All of this together means that my pain is relatively well controlled. I can sleep most of the night without interruption (only getting up to go to the toilet as opposed to getting up to dance around the room in various states of agony), and during the day I can function almost normally.
I say almost, because one of the side effects of the spinal catheter is that I lose sensation in both legs. For some reason (and the palliative care doctor, Anne thinks it may be due to both the location of the larger tumour mass and the location in my spine of the catheter), the loss of sensation is greater in my left leg than in my right. After a single boost, my left leg not only goes completely numb, but it also can no longer support my weight, requiring that I walk around with the aid of a stick. It is forecast that my pain will increase, and the dosages of drugs in the cassette will increase accordingly, resulting in me eventually being unable to walk around at all - initially for part of the time, and ultimately permanently. In order to stave this off for as long as possible, I am probably putting up with more pain than I need to, but the compromise between the pain management and my independent mobility is one I am at the moment happy to make.
The "sores" on my backside continue to grow, and it must be said are looking uglier and more threatening with each passing day! My once pristine arse is now positively lunar in its appearance as the tumours break through the skin and make for daylight.
Sarah is dressing the wounds at least once every day, and in recent days they have begun to bleed a little more, adding to her anxieties about what is actually happening inside me. In my right groin, there is another lump, which occasionally bleeds and is pressing against my swollen scrotum causing some chafing and soreness. The one on the left of the groin is at the moment still small enough to not create any problems.
I have what is called lympodoema, where my legs have swollen due to the poor flow of lymph drainage, and this has to be massaged every day to alleviate the swelling - a pleasant enough experience for me, but just more hard work for Sarah. She also applies some emollient cream to my legs as the skin there is degrading, getting extremely dry and flakey, and easy to puncture. This apparently heightens the risk of infection to me generally, which with a weakened immune system from the lymphatic cancer, poses another threat to life. Funny how the doctors seem to worry about this kind of thing, when in truth I am to their minds only the "walking dead" anyway.
In the past week or so, two new pains have arisen: one on the left side of my pelvis, just above the groin, and the other on my right. If I feel the area immediately around the pain sites, it is rock hard, which is either due to mere tumour presence, or a side effect of the lymphodoema. Whatever it is, it bloody hurts at times, and needs a quick push of the booster button so that the drugs can work their magic.
So all of that is the physical update.
Now for the emotional!
Sarah is feeling tired and, naturally, sometimes extremely upset about the whole thing. We had both been saying we were on a plateau recently, thinking not much was going on, but the truth is that the tumours on my backside have been constantly growing, and the pain has been steadily increasing. At times, she can burst into tears when confronting the probable outcome of all this, and the nearer the possibility of my needing a wheelchair becomes, the more real my eventual death becomes for her. She is still going to work, because we both feel that, currently, to be sat at home staring into each other's eyes is going to be of no use to either of us. Our weekend in the dales was both pleasurable and confronting for her, as it has always been a part of Yorkshire we love, and has been the location of many of our favourite walks in the hills. For us to be there with me unable to walk more than a few hundred yards, very slowly, hammered home the contrast between me a few years ago, and me now. For her to have to face the prospect of being alone, and the prospect of watching me fade in front of her, can drain her of all energy and hope in an instant. It's one of the reasons I keep telling people: cancer is much harder for the person watching a loved one suffer, than it is for the actual cancer patient.
Emma is, being younger, able to separate her life from her father's cancer most of the time. It's amazing to me how resilient and how positively cheerful she can be - and she is actually choosing to do that! She told me not long ago that while the circumstances were, in her words, shite, she was still trying to be happy. That having been said, she frequently wants to be held and cuddled these days; it is one small reassurance during the sad saga for her.
And me: well, Sarah told me off yesterday for saying on the phone that I was fine, and doing OK, when at the time I had just been bent over the kitchen worktops in agony waiting for the booster to take effect. But that is how it is with me: I think that if I tell people over the phone that I am in agony, that is nothing more than moaning and whinging, and there is enough of that about these days! I am still convinced: if I die from this, I was meant to and I am merely being given a job promotion as my services are required elsewhere. If I don't die from this, it will be due more to the whimsy of fate than anything I have done that is outstanding, as although I meditate and visualise daily, and although I believe in the power of the mind to influence healing in the body, I am not yet arrogant enough to think that such a miracle could be conjured up by me alone.
What gets me through each day is the fact of being present: I am more here these days than before, and I can see the thousands of little miracles that make up my life and my world far more clearly than I could before I became ill. And I have a life that is so ridiculously full of love, from my wife and daughter, from my friends and family, that to complain about it seems to me to be a bit churlish.
So that's all for this post: I am going to be getting a new cassette in a few days time, and have a doctor's appointment with the Palliative Care Team in three weeks or so, and I'll keep you all posted on how that all goes.
Feel free to send any messages or comments!