Friday 20 December 2013

How are you?

"How're you doing?" "You okay?

These are understandably the most common questions that I'm presented with. I'm not insensitive or callous enough to misunderstand the urge to ask these sort of questions but I do find it quite difficult to give anything but platitudinous, apparently dismissive answers.

This entry will serve as an update and to try and explain why I may appear withdrawn at times and why I'm sometimes reluctant to be social.

The physical effects of the primary tumour are that I feel as though I have a couple of pounds of lead sat in my pelvis. This sensation of mass is permanent (it is an exaggeration but that is the sensation), it makes sitting, walking, driving and standing a little uncomfortable. The only real relief from it is gained laying down.

Apart from the discomfort, the main effect is on my bladder, I'm back to square one. Actually it's worse than it was when I first presented with the symptoms. Now it ranges from uncomfortable to painful when passing water, occasionally very painful (usually every trip to the toilet in the night is in this category). The urge to pee can be immediate, little or no warning and with reduced ability to hold back. In the night it's what wakes me almost hourly now and because it's at the point where the urge finally penetrates my sleep, by the time I'm awake the need to pee is so great that it can be very painful indeed. The delay makes things worse both in terms of the discomfort and the duration (it's like wringing a damp cloth in terms of flow).

Quite regularly I feel a spasm that begins somewhere at the pit of my stomach, a bolt of sharp, stabbing discomfort that travels either along my urethra or to the perineum. It can make me twitch or jerk spasmodically and because it comes without warning it's difficult to suppress.

The secondary cancer in my hip and femur sometimes ache. This isn't that bad. It's a sort of dull background ache that is mostly masked by the pain control I'm using. At worst it can wake me at night (not often so far) or make it difficult to sit still.

It seems to be the case that the worst of it is first thing in the morning and then from mid-evening until I can get to sleep. I don't know why precisely. My theory is that by the morning my overnight pain control has worn off and it takes a while for the next dose to get to work. By the evening it's probably a cumulative effect of the day's activity and the weariness that builds as the day goes on.

I'm reluctant to share these periods with anyone because it's not easy to hide the effects. I'm aware that people are conscious of the condition, I'm oddly embarrassed by it but more importantly for me I dislike the obvious discomfort of others who wish to do or say something yet know there's nothing they can do. I find their frustration harder to deal with than my own discomfort.

Then there's the mental effects. To be honest these aren't too bad. I'm not given to self pity and I still don't feel hard done by. Depression isn't an issue. I suppose the knowledge that what future I have is truncated throws me back onto my stock of memories a little more often than I used to but it isn't with any sense of lost opportunities or (many) regrets.

In the New Year I have an appointment for the next hormone injection and to arrange the next blood sample for a PSA test before the February oncology appointment. I intend discussing what the next step in pain management is because I'm close to the limit (sometimes at the limit) of what is the safe dosage of my current pain killer.

I hope that this won't put anyone off from asking me to be sociable, that's not the intent. Rather, I just wanted to explain why I may at times be reluctant to spend as much time with you as I once may have done or would really prefer now.

Oh yes, happy solstice everyone. Wassail!