Pink Elephants

Yesterday was the day to change the cassette and increase the clonadine by 2mg in the hope this small change would increase the effectiveness of the pain relief as it did a few weeks ago. With my appointment at 3.15, Sarah and I left early in the hope of getting a coffee and avoiding the madness and mayhem of the hospital car park at "visiting time". So eager are the relatives and friends of York's aged and infirm to see their loved one(s), they will, it seems, stop at nothing to ensure they get to a parking space first. All consideration and polite niceties go out of the window, first in the queue to get into the car park (those turning right from the main road have no alternative but to attempt to squeeze their way into a gap left by the person suffering a momentary lapse of concentration causing them to leave a gap of more than 10cm between their front bumper and the rear of the car in front of them!), and then in the car park itself, where the arrows on the floor indicating the required direction of traffic flow are seen as little more than an intimation of general preference as people in people carriers and four by fours attempt to get into car park spaces designed when the hospital was built and the average customer had a Ford Anglia or a Moggy Minor. The resulting lack of space means that many a car is going to get its fender scraped, its wings clipped and, one day I am sure as the tide of frustration breaks in a fit of car park rage, will simply be squashed by the person who has decided to beat the system and come by Chieftain Tank.

Slightly delayed, we sacrificed coffee, and although when I intially arrived at the Day unit I was told there'd be a wait, Dr Hall saw me very quickly (I suspect bumping me up the list due to the fact my procedure is so quick). Although it is impossible, the change had immediate effect, and my left leg went totally numb. This is impossible because there is still about 2ml of solution left in the tube from where it leaves the pump to when it enters my spine - which should obviously take about an hour and a bit to go through, dragging the new solution behind it. But my leg was so numb, Sarah and I had to go for a coffee before I could attempt getting into the car for the return trip home. If we hadn't had the foresight to load the wheelchair, I would have been stranded or, worse, having to use a hospital wheelchair which has the comfort of a bed of nails.

The result of all this is, on 18 hours or so evidence, the pain has been reduced by the increase of clonadine, and my mobility seems not to have suffered.

In addition to the hospital visit, there was another development yesterday. On Monday night, I got out of bed to go to the toilet and my moving about disturbed Sarah, and she got up too. As I take so long to pee these days (I have been known to hit an actual 6 minutes of weeing time) Sarah went first. I then began to suffer from shortness of breath, and my breathing became shallow, laboured and was turning into the experience I'd had when I visited the recycling centre. With my walking stick, I somehow hobbled-ran to the bedroom where the large oxygen cylinder was waiting and, sitting down on the bed, my shaking hands found the canula (hospital word for "tube") to insert into my nose and I turned the tap on to six, three times my usual dose. Very quickly, my breath came back. I gave Sarah several reasons for the sudden onset of my shallow breathing - like the coldness of getting out of bed late at night hitting my body taking some breath away, and the fact there is some liquid still on the lung which will be moving about and perhaps is causing problems when I stand up. She accepted the reasons, and we both returned to bed and slept - me with the oxygen close to hand and the nasal canula hanging on the bedstead.

Sarah woke at her usual time to go to work (6.15 or so) and, as usual, I slept on. I got out of bed at 7.30, and when I walked towards the bathroom, I had a return of the shortness of breath once again. This was something I had never had before - waking up to a warm room (Sarah will have turned the heating on when she got up), and yet still getting such an attack. When I returned to the bedroom, it began to stop even before I had put the canula into my nose. I called Sarah once my breath had returned and asked her to bring up the small portable oxygen cylinder so that I could go to the bathroom once again. When I told her what had happened, she obviously wanted to stay home with me, and was not happy until I reassured her I had everything I needed.

And sure enough, when I got downstairs and had some breakfast (7 tablets and a bowl of porridge) I was absolutely fine. I placed the small portable oxygen tank on a chair in the dining room, and went about all my usual activites without a hitch or even a hint of any shallowness of breathing. At 11.30, I decided to do my usual trip to the shop to buy myself a newspaper. I left the house having put on a coat to ensure I didn't feel any ill effects from the cool air outside, shut the front door to the house and walked slowly up the street. By the time I'd gone 50 metres or so, I began to feel my breath getting short again. I told myself "this is stupid! You've been fine all morning, you're going to be fine now. This is not going to make you short of breath!" You see, even a person such as me, well trained in hypnotherapy and the art of suggestion, at such a time forgot one of the most basic facts of the human mind - you cannot think a "not". If you say to someone "don't think of a pink elephant" you can guarantee they think of a pink elephant! If you tell a child, "Don't run into the street!" they start thinking about running into the sreet! So saying I am not going to get short of breath makes me think of getting short of breath! Before long, I am at the top of our street having a full blown attack of the kind first experienced before Christmas when the fluid on my lungs had yet to be drained. I stood still, and although my breath was laboured, I told myself "Relax", and then I began the simple Buddhist meditation called twenty one breaths, where you count 21 breaths in and 21 breaths out - it doesn't sound like much, but it's very easy for people to lose count, and when you do, you have to start again. Fortunately, this time, it had the effect of taking my mind off the shortage of breath, and back onto the breath itself, and within a few minutes I was breathing normally again. I decided, however, to come home rather than go to the shop as had been my intention. Once home, again there were no more issues with breathing at all. So now I realised I was having a panic attack about not breathing which brought on an attack of not breathing. The clearest example of this was when Sarah came home to take me to the hospital, she loaded the wheelchair into the car, and then took the portable oxygen to put into the car too. The moment the portable cyclinder was out of my reach, and only the cylinders upstairs remained, I began to fear needing oxygen, and became short of breath once more. When Sarah brought the oxygen back, I recovered without needing to use it. I was, in effect, conditioned to be near oxygen for fear of not being able to breathe without it.

Thankfully, Sarah is an extraordinary person and she immediately recognised the problem for what it was, and told me "Don't be so hard on yourself all the time! This is the first time anything like this has happened to you and you have been through and coped with so much. Go easy on yourself." On the way to the hospital, she continued talking to me, and gradually, she was able to get me to laugh about it and not be so serious and, as she had rightly said, so hard on myself. "So what if you go to the paper shop with a can of oxygen on your back. I should think most people with oxygen don't try to go walking anywhere anyway! If you are worried about leaving oxygen behind, then what's wrong with taking it with you!"

And that, in a simple nutshell, gave me a choice again. Once again it was my power to choose to have the cylinder with me or not, and when I had the choice, it seemed to me I could do without the oxygen or not, and it didn't really matter one way or another. The fact I panicked about not being able to breathe was something I could easily forgive myself for: after all, I had been scared I would die when the first one had happened, and that is bound to have some effect!I have yet to go to the shop today to buy a paper, so I don't yet know if I'll choose to take the cylinder or not. The thing is though, it is now my choice. By allowing me to laugh at myself and to not be serious herself, Sarah gave me back freedom to choose. She truly is a remarkable person, and gets more remarkable in the face of this horrendous situation as each day and new challenge arrives.