Back to Life

It's time to return to normality for everyone after the Christmas break, which means going back to work, breaking New Year Resolutions, and wondering if the Christmas excesses require a full detox diet or just a diet to get rid of the additional few pounds laid down during the festivities. For me, it means going back to the regularity of catheter pain cassette changes (tomorrow morning) and visits to the Palliative Care Team at the hospital to review the symptoms and amend the drug programme according to any new developments (Tuesday afternoon). And of course, it means going back to wondering about the things that cause concern to me and my family in this situation - should Sarah be going back to work or considering staying at home (although we want to spend time together, as Sarah says, no amount of time spent together will make up for the years we are not going to have), should I consider sending my lease car back as I am getting to the stage where driving is uncomfortable over even relatively short distances, and we could save a few quid in the process, or how will we pay the bills if I can't work any more, and so on. Living with cancer is, in effect, just like normal life, but with a few different concerns thrown in.

When I get the cassette changed tomorrow, I will be reporting to Dr Hall the fact the pain has increased, and quite dramatically in the past week alone. The tumours on my rear and groin have expanded and begun to join together, which means I have a new level of pain to manage as the tumour develops onto the scrotum area, and on the groin next to it as well as at the top of my left leg. These can cause intense discomfort when I am walking, but the pain can be easily managed by giving myself one of the boosts from the pump. However, at the current concentrations, I am having to use large amounts of the mixture in order to numb the pain - so much so that the amount of drug left tomorrow in the cassette I am handing back will be about 4 to 5ml - a level that is a little to close to running out for me to be comfortable doing it too often! The thought of what I would be experiencing if this pain relief were to suddenly run out is enough to give me nightmares if I dwell on it too much. I have also increased the oral medication in an attempt to keep the cassette boosts down to a minimum, but this new pain seems to ignore whatever levels I imbibe at the moment and makes little difference to the boosters at all.

All that means is, I shall need another change in a week's time, and it will have to increase in concentration. On the other hand, this increment in pain levels also indicates a possibility that the tumour is growing more quickly in my pelvis, and could be causing all sorts of unseen problems for me and the rather complex arrangement of nerves, muscles and general equipment in the area. But as I said in my last entry, such speculation is added meaning to what is actually happening, and any speculation is useless - I for one have yet to meet anyone who can accurately predict the future, even though there may be a lot of information about what appears to be next.

The fact Christmas break is now over does have another, much more specific, meaning for me. As I've said before, I really was uncertain back in September, I would be seeing Christmas '08 at all, and therefore to have done so and to still be around for the start of '09, means that I can genuinely hold every day as a bonus! I got to see my young nephew when my younger sister Amanda made the lengthy trip with him from Surrey in the car - that distance, with a post Christmas four year old in tow, could be regarded as a feat in itself, as the season of Christmas is one of intense hyper-activity for one so young as George. I loved the fact we could both play street cleaner together as he took an instant fancy to my mechanical picking up device and enrolled me in going into our street and picking up all the litter we could find. That, and the fact we were both able to cause havoc in our lounge with the remote control indoor helicopter (mine, not George's, until I gave it to him on his morning of departure) was one of my holiday high spots. We both liked the fact I landed the toy in a friend's cup of coffee, and neither of us were told off for such peurile high jinx.

This Saturday also saw a visit from my two nieces, accompanied by my elder sister Sue and my Mum along with the boyfriend of one of my nieces (Luke). We did little together, but just to see the two of them again, and for all of us to be talking and laughing together over the lunch table, was a real pleasure for me, because living 200 miles away from them I don't get to see any of them often enough. My sister-in-law Linda (from the Lewendon side) also paid a flying visit during the day and it was lovely to see her as well. It is these events, which once I could have said were simply opportunities to catch up and have a reasonably good time with family, I now regard as important chances to celebrate the joy of being alive. When I am really present to how wonderful it is just to be here, whether it be with friends or family, or simply with Sarah and Emma, the discomfort and the weighty issue of my potentially imminent death, really do fade well into the background - they don't go away, but they take up a good deal less "head-space".

The only other element to report is the visit to the hospice, made by Sarah and I to familiarise ourselves with the place and to know what to expect if and when I go there. As with the other hospices I have seen in the past, St Leonard's in York is tranquil inside, with very little going on when compared to the busy flustered hospital wards I have been on. Each of the single rooms looks out onto green fields, and has enough space to allow for one or two family members to sleep over, and also allows some personalisation of the space to make a patient feel more at home. The staff, again in common with other hospices I've seen, all appear to be especially softly spoken, and gentle in their manner - and from those I have spoken to in the past as well as those seen yesterday, regard working in a hospice environment as a gift and a privilege - sometimes harrowing, yes, but generally a place where they feel people are being served and allowed to die well in difficult circumstances.

So I will, once again, be keeping this blog up to date (having had my own Christmas break from writing) and hence will let you know how things go after the hospital appointments this week, and no doubt continue with my other musings of a non informational nature as well - I can't help it, my philosophy degree still exerts a hefty influence on me!