15. June 2012

For some reason I would have to classify this as a’ low day’. No particular reason, that I can think of, I just did not have my usual spark.

Perhaps it was because it was another sunny morning, and it, the chilly side, I admit, but one that I could possibly have gone out into the garden yet some fresh air. Apart from the one visit to the golf club in March it happened the particularly warm I had not been outside, apart from has to ambulance, this year. Perhaps I was feeling a bit off-colour as during the six o’clock carer call I actually felt sick and although I had wretched a couple of times. I did not actually vomit. After that I felt a little better and survived the evening without any further alarms.

Earlier in the day. I have received a return call from Doctor Michael Davies, my consultant at Papworth hospital. I must say I have been very impressed with the care and attention devoted to patients at this hospital. I had e-mailed Michael a few days ago, saying I would like to discuss these episodes of surges of adrenaline. We spent some time talking about these rather alarming events. The first two were quite understandably they were frightening, particularly the first which arose as a result of the air pipe coming adrift from the respirator. I found myself with the nose and mouth sealed tight with no air coming in. Of course, I panicked and it took me fully 10 to 15 min, being held by ‘my lovely’, before I felt confident enough to put on the respirator and try again. The second occasion occurred when the respirator was taken off to quickly and my own breathing has not kicked in. As a result of these episodes of course I am slightly nervous when the respirator is removed so now we take the process slowly, step by step.

What can we do to avoid the use frightening episodes recurring? Nothing, other than what we are already doing and that is removing the respirator slowly     to enable my own lungs to kick in. Hopefully, with the passage of time, the frightening experience will fade and I will return to normality as regards the respirator.

Of course, it is perfectly normal to be nervous about the respirator. Particularly, in my case, where I wear it over an eye mask (by courtesy of the many overnight flights I have taken). For someone who has been frightened of the dark. Since a small child, you are leaving yourself extremely vulnerable without sight and in the hands of anyone who messes about with the air pipe. Of course there is no reason why anyone should want to do you harm but experiences in early childhood which are stamped indelibly on one’s memory, and no matter how much one tries to rationalise the fear, it is always there.

We had a scare at six o’clock, when I was being dressed for bed. The standing hoist failed to function correctly. Although it was only a momentary lapse, it was enough to reinforce our fears that if hoist ever did fail with me up in the air, we will probably have to get they paramedics or the fire brigade to get me down.

Whilst I was in my e-mail server, Outlook I noticed that I had three draft e-mails waiting to be sent. One of them, to Doctor Margaret Saunders of the Rank Hospice was an important follow-up on the question of pain relief. I had obviously in waiting for some piece of information, before sending this e-mail, and then once it was in my draft e-mail box, I had completely forgotten about it.

The point was that Margaret and introduced me to Doctor Marc Abrahams, the pain consultant at Addenbrookes, who had carried out the nerve block on my shoulder. As all of my joints were painful, to some extent or another, I had asked Doctor Abrahams , where Thomlinson we went from here with the question of pain control other than the shoulder on which he had already attempted a nerve block. Dr. Abrahams had made a number of general suggestions about not taking one particular pain killer for a day or two, or adjusting the dosage, to see what a difference it made. In writing to Margaret Saunders, I suggested I would prefer some specific instructions which I would then follow and report back on.

What to divert the reader with today? Somebody sent me a batch of interesting photographs with no particular theme, but they are certainly worth looking at. Click here to see them