A truly medical day after the long weekend and the dramas of the collapsing legs. Telephone calls to the district nurse re Continuing Care – we really need help for a few minutes in the evening to get me out of my chair and perhaps in the morning, for the loo. Then there was another call to Dr Margaret Saunders, the palliative care lady, about the two people who she was going to arrange to come here, one to teach me to breathe more effectively and the other one to show ‘my lovely’ how to rub my tummy to remove some of air. Then I called Dr Chris Allen – the head of my MND team at Addenbrooke’s Hospital – I’ve to try to persuade him to speak to Dr Ian Smith, at Papworth Hospital, about the possibility of fitting me with a diaphragm pacer. Then various calls to Lynne, our OT. to arrange for her to come tomorrow to physically demonstrate getting me out of one chair into a wheelchair. Then Holly’s, the wheelchair people, rang about putting some switches on to the left-hand armrest of the electric wheelchair so I could stop and start and control it from there as well as using my right hand to steer it. No sooner was the telephone put down than Mark, from Holly’s, appeared at the door like magic with the switches. He is also assessed me for a chin control for the day when my arms no longer work. While he was fixing the switches to the chair, Harriet, the boss of Ross Nursing-‘s whose offices are just round the corner, arrived with one of her nice young nurses, Louise, as a response to our request for Continuing Care.
They proved to be wonderfully accommodating and seemed to be prepared to work to our desired timetable rather than times to suit them. They will start tomorrow morning at 7:30 a.m.I’m so pleased that at last ‘my lovely’, who has struggled on so manfully and bravely for the past year, at last, will be relieved of much of her anxiety.
‘Jane the sheep’ came at lunchtime and, amongst other things, massaged my hands and stretched my arms, as she has done over several months,. Maybe I can get the continuing care nurses to doing this on the days when Jane doesn’t come in order to keep my joints mobile and the fluid in my hands to a minimum.
After all the medical staff I thought the reader deserves some diversion. This first video, (click on the URL below) although little long (about 16 min.) is so well worth watching from a human relationship point of view and recognising the old boy (Uncle Jack) as redolent of the many thousands of young heroes /heroines who served in both world wars and are today still fighting on our behalf in Afghanistan and Iraq.
For the real aircraft buffs amongst you I can recommend looking at the other videos which show up when you click on to this one. They have a special meaning to me as I was flying 50 years ago, in Australia, with the good Dr Michael and his crop spraying brother, David. My first lessons were in.a little Gypsy Moth-whose wings we used to fold to put it away into the garage at night-then onto a Tiger Moth and finally onto an Auster Autocar. We flew all over the place, including one intrepid trip from Melbourne right across the centre of Australia (the ‘Great Bugger All’ as it is affectionately known in Australia) beyond Alice Springs to Tenants Creek. No radio and a rather dicky fuel gauge which meant that we had to carry a calibrated bamboo stick to dip into the petrol tank as we flew along to see how close we were to empty. This was a little more complex than you might think as we had to carry out this performance in mid-air, so to speak. It meant opening the door and whichever one of us was flying at the time (usually Mick) would have to unscrew the petrol cap, dip the stick and then bring it back into the cabin and close the door. If we were then empty, or close to it, whoever was sitting on the backseat (usually me) would then have to siphon petrol from a 4 gallon you and you and drum again through the open door into the tank to keep us going until we could find the fuel dump the been there for us in the ‘Great Bugger All’ I recall, one occasion, with Mick leaning out to perform this task when he came back asking rather apprehensively whether or not he had his spectacles or at the time because they certainly were there when his head came back into the cabin!. I have a number of flying tales to tell but not now, let these true heroes speak for themselves first..