Home Again

I arrived at the hospital to be told I was definitely staying in over night and there was no "possibly" about it. I'd foolishly assumed when I'd been told by the appointment's secretary to bring an overnight bag "just in case", there was some doubt about it! It is the kind of poor communication that can create an expectation which, when its thwarted, leaves me feeling very frustrated. If I'd been told unequivocally I'd have to stay, I wouldn't have been quite so stubborn (well, maybe) about it when Dr. Hall asked me to stay the night at the hospital to be observed. In the end though, he won out by resorting to emotional blackmail, and saying "What if your wife can't wake you in the morning, because your blood pressure has gone so low you have gone into a deep faint?" That swung it, and I settled to my fate with a reluctant inevitability.



The procedure itself went without a hitch, as usual, and the addition of clonidine (2mg) in the solution, soon showed a marked improvement in the level of pain control. So much so, in fact, I was able to lower the hourly rate to 4.5 ml, and reduce the booster dose to 5 ml. It means, of course, there is a little more pain control in reserve now (the clonidine can be raised again, without an overnighter this time, as well as raising the other drugs), and that is very comforting to know as the pains do seem to increase every week to the point where, after a fortnight to four weeks, some additional action is necessary. It also means I can go back to a fortnightly change of cassette, as the volumes I am using mean it will last much longer now. So having to withstand the Turkish Sauna heat of the hospital ward at least bore some fruit.



In order to check the clonidine was having no adverse impacts, I was monitored hourly with my temperature, blood pressure and pulse rates being recorded, and they all stayed pretty much normal throughout the 20 or so hours I was in. The only slight cause of consternation for the nurses was when they took the stats at 6 in the morning, and it showed my pulse rate to be high (over 100 in the lying position) and the percentage of oxygen in my blood to be low (normal would be 96% and above and at 6.00 a.m. today it was 84%). This is the time when, for some reason, I get short of breath even lying down. It's strange, because most of the day I have to actually do something, like climb a flight of stairs, for me to get out of breath, but there is something about my having laid down for an extended period, or having had several night time boosts of the drugs, which results in my experiencing shortness of breath. The first time it happened (about a week ago) I have to admit to being a bit panicky, wondering what was going on and if I would die there and then. But now I know it passes, and if I stand up it goes almost immediately, I'm not as frightened by it. The nurses this morning, however, were. It was amusing to hear the nurse be reassuring with me, and then hear her in the room next door saying, "Mr. French's stats are TERRIBLE!" I'd also mentioned the fact I am due to have a change of (urinary) catheter in two weeks, and wondered if they could do it whilst I was in overnight, but this level of flexibility was beyond the NHS, a behemoth much like an oil tanker - unable to change it's course rapidly and having to go through a few hundred pieces of paper to even stand a remote chance of accommodating something as simple as a time saving idea from one of its patients.

Still, I know I will be contacting our GP later this week, and I'll arrange the catheter change then, and see what might be available to ease the shortness of breath in the morning.


There was one thing I noticed particularly, being in the hospital surrounded by ill people. I, strangely given my diagnosis, don't look ill! Yes, I have my little attachments, but only the thin catheter tube from the pump into my side is remotely visible; the bag containing the pump could be mistaken for a strange "manbag" fashion accessory, but everything else is hidden from view. I could see the other patients in the ward looking at me and thinking "What's wrong with him then?" as to external eyes, I am nought but a shirker, occasionally reaching for a walking stick in an attempt to try to appear really ill! The facts are a little different, a point brought home with great simplicity by Dr. Hall during the cassette change yesterday, just after he told me the addition of clonidine was a rare occurrence. "You have to realise," he said matter of factly, "very few people get to this point. You have already been wearing this pump for nearly six months now, and to tell you the truth David, you're almost setting the record for the time you've been able to wear this." I looked at him, and checked I'd got the full meaning of his message - i.e. most people using the pump system have died long before they reach this point - and he looked at me, raised one eyebrow, and as this was part of his influencing me to stay overnight, went straight for the jugular thereafter with his statement about Sarah being unable to wake me.



It reflects too what Dr. Anne Garry said a few months back now, once to Sarah and I and once to a definitely hungover medical student who was facing the prospect of viewing my cratered bum with nauseous trepidation. To Sarah and I she'd said, "You have to realise, we are at a stage with David's health where any number of things could happen in a very short space of time, and he would deteriorate terribly quickly." To the pale faced student she said, "If you saw Mr. French in the street, you'd think there was nothing wrong with him. It's only when he's undressed do you see the full extent of what is going on - colostomy, two catheters, swollen legs with extremely dry and disintegrating skin, tumours throughout the groin, and high levels of very strong medications being required on a regular basis."

It's that kind of pep talk from the doctors I could, in all honesty, do without.

Now with the new pain control in place, I can foresee Christmas being far easier than it would otherwise have been; I'll probably be able to get out in the wheelchair more easily, and we could the three of us perhaps fit in a couple of our own Christmas traditions, like Christmas Eve in Betty's, and a Boxing Day walk by the seaside somewhere on the East Coast. I might even be able to stand watching that Christmas M&S advertisement where Take That and a bunch of super models have a truly fabulous time in their little country mansion pied a terre, being all Christmassy and jokey together, playing charades and walking about in revealing M&S underwear. My Christmas may not hit such heady heights (and I hope not), but I think I can dare to hope for at least a time when we'll all be able to spend a trouble free few weeks together without work worries for Sarah, and with me being a lot more comfortable.