Stubborness and Fame

The cassette change with Dr Hall went without a hitch yesterday, and much as I suspected, I will have another change next week (on the Tuesday) when the clonadine will be increased in an attempt to combat the increased pain levels. With the cassette only having to last a week, it means I can give myself higher doses now without fear of running out of the drugs - an eventuality, as I mentioned before, I am unable to contemplate, because without this spinal infusion I would, I suspect, be more wailing banshee than my usual chirpy cockney chap self! The higher volumes also mean the pain is more easily controlled.

One snippet of new information was gained, however, which indicated what my considered life expectancy had been back in July, when the spinal catheter was first introduced. Dr. Hall had enquired after the condition of the entry site, where the tube went under the skin, because, as he said "The longer it stays in, the higher the possibility of an infection like meningitis." He then mentioned the fact that if the catheter is expected to be in longer than three months, they use the subcutaneous version - a smaller pump implanted under the skin, with only a 30 ml capacity requiring frequent refills. This obviously implied to me that back in July, when the catheter was inserted, I wasn't supposed to go much past September/ October! It made me feel as though I have achieved one small to middling victory in the battle for life! It now turns out, I am the longest wearer of this contraption York Hospital has known: a thumbs up for stubborness and independence!

Then this afternoon was the visit to the Palliative Care team at an appointment laid on especially for me by the registrar Claire Ruddock, a doctor who has bedside manner cracked with just the right mix of concern, joviality and genuine care. We'd also suggested bringing in the Tissue Viability Nurse to advise on dressings and to check out the state of my visible tumour sites as well as the degrading of the skin on my legs. This means I was thoroughly examined, and Claire was fully apprised of the latest symptoms and developments: as she said, there has been significant change between the situation now and that of only two to three weeks ago when I was in hospital for the drainage of my right lung. The only real development from this meeting was that the increase in oral medication I had already determined to give myself was a good idea, and that I should keep at that level for the moment until we can determine what changes, if any, the increased clonadine will bring about next week.

And so for now, we are in a reasonably stable condition, and really just waiting the results of next week's amendments.

On the non medical front, I have to report having achieved a certain small local notoriety. In the York Press an article appeared just before Christmas telling people of the blog and the fund raising campaign, and that was followed up yesterday with another story lifting quotes from the blog about our Christmas. The upshot of this so far has not been the main desired one of increased contributions to the MacMillan fund, but the equally fun side effect of people locally now recognising me and stopping me in the street to ask me how I am (and sometimes sharing their ailments with me!) It can now take me an hour to make the return trip to the local convenience store to buy a newspaper as I meet people willing to have a chat. What's great about it is the number of offers of help there have been - there is such a high percentage of transient student population in our area the feeling of community has been difficult to find, and yet there it is, under the surface waiting to manifest itself at the first opportunity. People to whom I have said a brief hello in passing on the pavement have now become people with names who are willing to be of assistance in whatever way they can in my situation. With the state of the papers and news reports at the moment, it's been a pleasant reminder people can actually be humane and helpful with each other. There's also been the occasional time when I know someone has recognised my face from the photo in the paper, but not been too sure what the accompanying story was about, leaving them uncertain as to whether they come up and speak to me, or run away for fear of me being some dangerous criminal from the more serious news stories covered in the Press. Ah, the pressures of fame ... I'm afraid I'll have to go now to sign a few autographs.