The Waiting

I've mentioned before that tomorrow is a cassette change day; they tend to be every two weeks on a Monday simply because that is how long the 250ml cassette contents lasts given the rate currrently per hour is 0.5 ml, with the booster set at 0.6ml every time I use it. The fact tomorrow is also going to see an increase in the concentration of the local anaesthetic (bipuvacaine) adds a certain frisson to the whole event. Sarah nearly always accompanies me to the hospital for a cassette change, but when there is an increase to either the morphine or the bipuvacaine, she definitely ensures she has the time off to take me and wait for the change to be complete because we simply don't know what effect it will have. The increase tomorrow is small, but there is a still a concern as to whether it will result in me having to use the walking stick permanently or not, or, even worse, I have to move on to the next step which will be using a walking frame. Although I am confident the small change will have little effect, there is still a doubt, and that makes the waiting all the harder. Even asking the doctors wouldn't help to clarify matters, as the only answer they can give is the one we have heard so many times before: everyone has their own individual responses, and to predict one person's is impossible, even though a history has been built up of the reactions to the changes thus far.

Now, in this documenting of my "journey" (I wish now I hadn't used that word, as it seems every celebrity on either "Strictly", or in the jungle, or contestant in "X Factor" seems to have been on a flipping "journey"!) I have promised honesty, although it may not result in things everyone wants to hear. The fact the increase is due tomorrow is, in spite of the slight fear of increased disability, something I welcome for the simple reason the pain I am experiencing at the current concentrations is in itself debilitating. A fortnight ago, when the then new pains in my groin were only a week or so old, they were relatively easy to put up with, but now their intensity has increased to such a point that I require to give myself a boost almost the moment they begin, and even then there is fifteen to twenty minutes of severe discomfort before the drugs successfully kick in. In addition, the intensity of what I call the "internal pain" (which is located about 5 cms above where my anus used to be) has reached a level where I can be temporarily stopped in my tracks. I let out a groan as it hits, and have to stop whatever it is I am doing as this pain takes over my whole being for a second or two, and then subsides to the point where I can think. This has meant I have, in the last week or so, slept less well as I have to wait until I am almost falling asleep on my feet to attempt getting into bed and going to sleep, and am trying to ensure I have had two boosts one on top of the other (they are separated by a 45 minute gap for safety reasons) so the pain will not prevent me nodding off. Once asleep, I stay that way for two to three hours, then wake up and go to the loo and ensure I give myself another boost before I get back into bed. I'll then wake up another 1.5 to 2 hours later to do the same thing, and this will go on until about 6 or 7 o'clock, when I have to get up because the strength of the pain requires me to take the oral medication.

As a result of all this nocturnal activity, I have become gradually more tired as the week progressed, and now, on Sunday afternoon, have had to try to go to sleep for an hour merely to feel something close to human. I haven't mentioned previously that sleeping during the day is always difficult for me. That's because in the evening I take some amitriptyline tablets, an extremely effective nerve drug I have been prescribed to deaden the nerve pains I experience whenever I lie down. The reasons for this pain were very clearly described to me for the first time by Dr Hall, the guy who now changes the cassette for me every fortnight. He told me, "The nerves at the base of your spine spread out from either side of the vertebrae like a girdle or an incomplete rib cage. Normally, these would almost entirely encircle the rectum, but in your case where that is now missing, the very next thing they touch is the prostate, and again, in your case, this is covered by tumour, and whichever position you lie down in, the tumour is always going to make contact with these nerves and cause you intense pain. That is the reason you need to take the amitriptyline." The upshot of that is I have to be very tired to be able to nod off to sleep quickly if I try to get a kip any time other than an hour or two after taking that particular drug. Fortunately, this afternoon, I was tired enough, and grabbed a half hour "power nap" (only the Americans could have come up with THAT one!) and now feel almost human again.

Another consequence of the increased pain has been Sarah and I getting ever more present to the seemingly inevitable time when the bed will be brought into the house and I'll be in it 24 - 7, which in itself leads to the thoughts about my dying. Even though I am able to retain a belief in a miracle, the size of that miracle gets bigger with each passing day, and the proximity of my entirely plausible death moves that little bit closer. This afternoon, before I had to sleep, Sarah and I took a short stroll down to the Millenium Bridge, and the talk turned all too naturally to what the future holds. As the bridge was crowded with students watching a rowing competition (I felt so sorry for them all in their vests and shorts as even with their energy expenditure to warm them, the temperature must have only be 1 - 3 degrees above freezing, and on the river the winds are completely unsheltered!), we talked in lowered tones about when the wheelchair would be needed and what the ultimate future holds. For me, the future stops at the point at which it becomes hardest for Sarah: my death is going to be her worst of all possible times - worse even than watching me suffer with the pain now - and we both know there is absolutely nothing we can do about it, other than cry.

In this way, a relatively simple and completely painless procedure and hospital visit results in a period of waiting charged with the highest emotions and possibly darkest fears brought into the open. I know I may sound unreal saying I can believe in the miracle, and perhaps I do so only to prevent the machinations of my mind arriving at a point some time in the future when Sarah and Emma are attending my funeral, or, even worse, reaching some time in the future when the memories of both my illness and death have begun to fade for other people - as they surely will, simply by virtue of the fact that everyone has their own life to live and own problems to face daily, leaving the two of them almost completely alone. I try to shut out any such visualisation, fearing my merely thinking about it can make it more plausible, but, paradoxically I also have to face it, because how else can I understand what Sarah is experiencing and fearing?

This may make this Sunday sound like a bloody horrible day! But, because we do talk about it and we both face what the other has to face, we eventually reach a point where the tears stop, and the present moment returns, and we can once again experience and enjoy the precious time we have together now. Time that is not as carefree as we have experienced in the past, or as unburdened as we have experienced in the past, but it is time together nonetheless.