19 July 2012
Russell’ the lounge chair engineer’ came this morning and quickly identified the problem, it was confined to the hand control unit. This was replaced and chair, once again, worked perfectly well. There was a little problem, in lowering me, with the new sling, in an upright position, it is absolutely useless if I am slumping slightly as there is no way I can shift about moving my weight. Therefore, having deposited me in a chair we had to elicit the assistance of Peter’ the gardener’ in conjunction with Russell’ the chair engineer’ to the lift me back into the lounger in the right position.
Advana, was in attendance, when all this was going on and she told me that she was trying to get a more versatile chair to replace the lounger. In the meantime I begged her to provide some sort of control unit that would not require me to press a small button as I was finding this increasingly difficult with my weakened fingers.
Speaking of Peter’ the gardener’, I must say I always get pleasure seeing the garden through the windows of the house as I am wheeled about hither and thither. Peter really does keep it beautifully and many pedestrian stop to admire it, or a car will slow down when they see what a pretty picture it makes to see such a lovely thatched house set in an English traditional garden setting.
Continuing what I started yesterday, reproducing editorial from the 1948 Times, reporting on the Olympic Games, today’s contribution comes from Rosemary Bennett, Social Affairs Correspondent. She says:
‘They were known as the Austerity Games the material put together on a shoestring in a matter of weeks using whichever facilities could be made suitable for Olympic sports.
Britain was picking itself up after the Second World War: London lay half ruined with families crammed into those homes that had escaped bombing: food was heavily rationed and money was short.
Not everyone could afford the 10 shillings (50 p, or £15 50 in today’s money) to see the main events. Ticket sales for the opening ceremony was so poor that nurses and soldiers were let in for free to make sure Wembley Stadium was full. On the day, in sweltering heat, 85,000 people watched a simple show, the highlight of which was the release of 2500 homing pigeons. Few in the crowd had a proper sunhat so newspapers were folded and handkerchiefs knotted to shade heads and faces. Dress was very modest….. Frocks, even for special occasions, were hand-me-downs or patched relics from the war years or before.
The photographs showed how thin people were in 1948. The average man was 10st 2lb (64 kg), which compares with 13st 2lb (83kg). today. Women were on average 8st 7lb (54kg) compared with 11st 1lb (70kg). today. No one was overweight. Even by 1960, after a decade of plenty, less than 1% of the population was obese-compared with one person in four today.
Few spectators could afford the cafes in Wembley Stadium. These required precious ration coupons, so people brought packed lunches …… Crowds at the post wargames were a sea of white faces… Although the first wave of immigration had started weeks earlier with the arrival of 493 W. Indians… And there was not a union jack in sight.
The Games were viewed as an adult spectacle, and children were a rare sight in the crowds.
So did the Olympics lift the spirits of a war weary nation? Most accounts suggest that they did.’
To be continued.
18 July 2012
Nine days to go for the opening ceremony of the Olympic Games before I get onto that I should deal with a much more mundane drama on the home front.
Around 6.30 last evening the NHS lounger chair decided to give up the ghost and stop working. Fortunately, it was up bright-in fact do the right to die was virtually being jilted out of it, we rang the emergency number from which we are told there is a 24 of the seven callout service and indeed it a computer message telling us that the number has changed but it did not give us the number which he has been changed in effect no we must stuck to tomorrow
Back to the 1948 Olympics, which were put on for a song and a prayer service in answer to the end of the Great World War One The inevitable scandal over black-market tickets for events thousands of people balloted for unsuccessfully now we hear suspicions that some of the additional Olympic representatives were allocated large blocks of tickets and were trying to sell them on the black market. However that is much more to do with the present Olympics than those of 1948.
The following is a direct quotation from the report by Ben McIntyre in this special edition of The Times , July 17, 1948.
The photographs evoked, an earlier simpler sporting world: unglamorous, and unsophisticated, threadbare and yet, in its positive, chin up and make do spirit, profoundly moving. The athletes had knobbly knees and bad teeth. They ran in home-made shorts on a converted dog racing track lined with cinders collected from the domestic hearths of Leicester. They bought their own towels, ate cheese sandwiches and slept in huts; they competed ferociously to win medals, and to celebrate peace. The London Olympics of 1948, staged just three years after the end of the Second World War was and avowedly political event.
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This was the DIY Olympics, scraped together from whatever could be found, adapted or borrowed. At Richmond Park, 2000 athletes slept on iron bedsteads in wooden army huts. Many competitors sewed their own kit. Basketballs and boxing gloves were sold off afterwards to recoup some of the cost. Milk, egg and cheese were still rationed, although the Olympians were permitted twice the normal calorific ration.
The first chill of Cold War was in the air, but the focus was firmly on the healing the wounds of the last war. On entering Wembley, spectators were greeted with the words:” The essential thing in life is not conquering cycling but fighting well will end of products. The message was clear: had the Allies not fought well, there would have been no Olympics. SThe long distance runner Emil Zatopek caught the emotive significance of these cheap, cheerful history-changing Games. “After all those dark days-the bombing, the killing, the starvation-the revival of the Olympics was as if the sun had, come out
“The very frugality of the. “Austerity Olympics.” was a repudiation of the Hitler’s Olympic propaganda extravaganza him 1936. Britain had put together an Olympics with what was left after Hitler had done his worst. Assembled from shred and patches in a spirit of optimism and friendly intentional rivalry, the 1948’s Olympics mended soul of sport.
There are some wonderful contemporary photographs in this special edition. As they say ‘a picture is worth 1000 words’. The fascinating thing is that ‘my lovely’s’ uncle, (who was to become General’ Johnny’ Sheffield actually completed in these games and got to the final of the 400 metres Hurdles, in the presence of that monster, Adolf Hitler’s. Sadly, Johnny caught tuberculosis after these games and was ordre de combat, for a few years my leaves for this team and disease over which his time and despite walking with an extremely weak left leg still rose through the ranks until he became a general. The single-mindedness of fighting on, instead of adopting the alternative of hiding himself away, was a perfect demonstration of the Olympic message, not conquering but fighting well
It is a sporting day -.the 4th.ODI cricket against South Africa and the first day of the British Open international golf.
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As the outcome of competing in the Olympics; and playing cricket and golf, is to win and in winning the player feel momentarily as if he was in heaven. This thought prompted me to include the following little tale. Click here to see how you would answer the question, which part of you would you like to enter heaven. first?.
17 July 2012
Drama at bedtime. The carer arrived at usual to prepare me for bed, last evening, and then took one look at the hoist and confessed that she was not familiar with the sling. Did the green loop go through the yellow loop before the blue loop etc , although she believed she had been shown how it worked, some time ago. After 15 min or so struggling with the sling I insisted that she went and found another carer who was more familiar with it. I certainly did not want another incident of dangling in the air upside-down. We are very fortunate in that we live no more than 100 yards from the Ross Nursing office, so the carer was able to rush over the to find someone who knew what they were doing.
This we did and all was well except that, no doubt, there would be an internal inquest of this incident to ensure it does not happen again
If you read the 14 and 15 July entries you might have wondered if there was something missing.
They concerned our reader, Penny de Quincey’s husband Stuart, last days. I had printed the original contribution as a comment to the entry which had prompted it. I subsequently agreed with Penny that I would publish a special Memorial Contribution, to Stuart, as the way Penny describes Stuart’s care and his last few days, should be an inspiration to us all who find ourselves in a similar position. I have now recaptured the original comment and placed it where it makes sense in combination with the other two smaller contributions that Penny made, the whole now being Stuart’s Memorial Contribution. I urge readers to go back and read 14th and 15th of July entries again, which I trust will now make sense.
Coincidently I received the following comment on my blog from one of my regular readers in the USA, and have forwarded it to Doctor Margaret Saunders of the Arthur Rank Hospice in Cambridge. Coming right after Penny’s contribution for husband Stuart, it is useful exercise for us to compare what sort of end we can expect.
Comment:
This is valuable info. I volunteer here in the U.S. with an outstanding organization (Hospice of Lancaster County, PA). The training was an afternoon each week for 12 weeks. When a patient is accepted (home care, Nursing home or hospital) it is a team approach to care for them and augment their existing resources. This includes nursing, social worker AND palliative care by specially trained nurse/physician pairings
A case status meeting by the team takes place weekly and grief counselling and other support extends to the patients family, even after the death of the patient. When a patient needs it there is a hospice center there for them and their family to stay, cook meals, etc 24/7. Sometime a patient spends a week or two at the Hospice Center and returns to their home. This is according to need of both the patient AND the caregiver.
Well, Stuart’s Memorial Contribution seems to have started some sort of discussion and I will be delighted if this is picked up by readers in other countries to share with us what they can expect from their Hospice organisation, that is, if such a thing exists in the country.
I finish today with a bit of triviality. This concerns three Irish drinking in a bar observing men, across the street, going in out of a well-known brothel. Click here to see the reason why it took the IRA 40 (?) years before we could get a tenuous peace agreement.
16 July 2012
Another good night. I really think Doctor West has got the combination of medication right to ensure a good evening’ s sleep.
My other stockbroker, and friend, Mark Jenkins, kindly came down at lunchtime today in order to go through my portfolio with me but this time with Alice in attendance so she has an idea what we are trying to achieve in our investments. We would have gone to The Cricketers but the weather was uncertain and we would not have been able to lunch outside, so we took the simpler option of having lunch in my study after we had completed our business.
I first saw Mark has a small 13 year old sitting on his bed at Haileybury, having recently arrived from Singapore, where his father had business. Miles and Mark were starting public school on the same day and in the same house. They have been friends ever since. I always liked Mark find myself in the strange position of trusting in him with my investments. Is this really the same little lad that I saw clutching his teddy bear, all those years ago?
The Olympics start in 10 days time the interest, nationally, seems to have waned as fast as it was worked up with the procession of the torch. Heaven knows, whether torture is today. But somewhere floating around London the first oops, and a potentially serious one is that the security firm who won the contract for the games find themselves 3500 personnel short. How long have they had to recruit the security guards; years now illusions of the Army is going to have to step in and fill the gap as there is no way they could recruit this number of applicants and fully and properly put them through all the tests in so short a time. Not a very auspicious start to these games,.
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Still no sign of the new commode or the larger sling despite chasing them each day for the last week or so.
BA launched a new Olympic themed advert which is quite clever; put in your home postcode and thanks to CGI and Google Maps, BA will send a Boeing 777 past your road while taxing to the Olympic stadium! http://taxi.ba.com/(well, this did not work very well for me stop there is just a flash green trees and country which was certainly not my house. Maybe you have more success.
15 July 2012
Following on from yesterday continuing the sharing of Penny de Quincy’s experience as a carer for her dear husband, who died from MND, earlier this year, I have reproduced her information, verbatim, below.
I’ve just read your latest blog and wanted to tell you that Stuart also became anxious (completely out of character) and I started giving him Lorezapam at night, at first just half a tablet and later a whole one, and they did seem to calm him but not sedate him too much. You can just take them as and when required, I believe.
Also we had a JUST IN CASE kit, provided by MNDA but stocked by the GP. It is in two parts. The carer’s side contained Midazolam in a form which you squirt into the mouth and which has an almost immediate effect of calming the patient, especially useful in breathing difficulties, perhaps while waiting for help to arrive. The other section is for a qualified practitioner to administer, and contains Midazolam injection and diamorphine. I found it very reassuring to have this by me, although we never in fact had to use it.
Can I put in a word for Hospice at Home? Without them Stuart would have had to go to hospital or at least the hospice. They are on call 24/7 and your carer can ring at any time and get a response immediately. The nurses are highly qualified and come out and administer drugs when needed and give advice over the phone, contact district nurse if she is closer and more able to respond. If you have a hospice in your area it might be a good idea to contact them and get an assessment now so that when you need them this is all set up. Most people aren’t aware of what they do. It is a marvellous organisation and they mastermind the drugs and everything necessary for the patient to remain comfortable until the end. They are absolute experts in palliative care, and have also supported me since Stuart’s death.
Please do let me know if I can be of further help.
All best wishes,
Penny
I have reproduced her account of Stuarts Last Day’s, verbatim, below.
STUART’S LAST DAYS……..
I am writing this in the hope that it will help other people suffering from MND to realise that even though they are terminally ill, they can still exercise a lot of control over the manner of their passing.
I should say that Stuart and I have, for 30 years or more, supported the work of “Dignity in Dying” as we always believed that people should be able to choose the time and manner of their passing within a legal framework. Although this is not (yet) legal in the UK, we can now make a lot of choices through an Advance Directive, which is LEGALLY BINDING.
Stuart was a quiet man, with a great deal of courage, and it was this courage which enabled him to die as he did. Careful planning is required, and that means facing up to things sooner than perhaps you or your loved ones would like, and putting in place the mechanisms to make your death as easy as possible. I know that MND sufferers are terrified of choking, suffocating, or what really amounts to drowning in your own secretions, and I want to tell you that it need not be that way, and that Stuart died at home, peacefully.
Stuart had signed an Advance Directive (a legal document which has to be respected) some months before, refusing ALL intervention (PEG feeding, artificial breathing apparatus, tracheotomy, antibiotics, resuscitation) and saying that he would only accept treatment to make him comfortable and relieve distressing symptoms. He spoke to our GP about it, and lodged a copy with him. His specialist had a copy, and we kept a copy at home in a yellow folder (this is a scheme we have in our area, and it also contained a DO NOT RESUSCITATE form in case paramedics were called for cardiac arrest or pulmonary failure). He discussed his wishes with everyone at Hospice at Home (more of this later), the dietician, speech therapist, and anyone else in his care team.
He then put it to the back of his mind, and concentrated on enjoying the last few months of his life as much as his illness would allow. We had holidays with friends and celebrated our 25th wedding anniversary. And all that…….
Although his MND had started slowly with only his right arm affected (he was at first diagnosed as having had a stroke) and proceeded in a fairly leisurely manner for about a year, his decline then became more rapid, until he could barely walk and it was becoming difficult to perform most everyday tasks.
When his swallowing became difficult, the dietician explained that this could go quite suddenly, and that at that stage, or indeed before, he would again be offered a feeding tube (PEG) which he had always refused, and that if he deteriorated to the extent that he couldn’t swallow liquids, then palliative care would be the only thing; he would be fitted with a syringe driver containing various drugs and could only survive a short time without taking in liquid.
He never faltered in his resolve, although we all checked from time to time to make sure that he didn’t want to reconsider either PEG feeding or breathing apparatus. When his swallowing finally went, and it DID go very quickly, the district nurse and the doctor explained again what would happen and asked if he was prepared for the fact that if he continued to refuse all treatment his life was drawing to a close. He said he was ready for that, and had been ready for some weeks. I think I knew this, as life was getting increasingly difficult, though he never once complained.
So this is what happened. He was made comfortable with diamorphine, and drugs to dry up secretions and to suppress anxiety.
He was alert enough to see and know his family and friends for the first day or so, then gradually slipped into a deeper sleep, and died peacefully three days later.
We could not have done this without the help of Hospice at Home, our wonderful District Nurses, and some sleepovers by Marie Curie Nurses. All this was masterminded by Hospice at Home, who liaised with the rest of the team over dosages etc to keep Stuart comfortable.
It wasn’t easy, but it was what Stuart wanted, and his courage gave me the courage to share it with him. He was at home until the end, and there were only a few brief moments when he was not quite as comfortable as I would have liked him to be. Which I think is pretty good, given what it might have been like and given the difficult nature of this horrid disease.
I know we are very lucky to live in Suffolk, where palliative care is so good and the Hospice so well organised, and I acknowledge that this standard of care may not be readily available everywhere. But I want to spread the word that this IS available, and that you can make it happen if you are brave enough to prepare for it.
Stuart donated brain tissue to the Brain Bank at Addenbrookes for research into MND. This also needs careful planning in advance, and the consent and support of loved ones/next of kin. Tissue must reach the Brain Bank within 48 hours, so it is crucial that preparation is done and that everyone on the medical team knows about it.
I am very proud of my darling Stuart. He was exceptionally brave and steadfast in his refusal to accept any treatment to prolong his life. And all that in spite of (or because of) the fact that he loved life with such a passion. The quality of his life was what mattered to him, not how long it lasted. And broken-hearted though I am not to have him with me any longer, I know that at the end he got the death he wanted, and that I was with him all the way, and that will be a source of great strength to me.
14 July 2012
Here we are almost halfway through July and there is no sign of the renowned English summer. Where are those dreamy days where it was really too hot to do anything other than to keep in the shade, or perhaps indulging the short periods of sun-tanning and then retire to the shade, I remember so well those hot August days when the shimmering heat on the tarmac hips was reminiscent of the mirage we won’t see on some film or other on location in the desert. To date we have had no such days. I know better than most people as it is only on such days that I am permitted to be put into my wheelchair either after breakfast, or lunch time, to spend a little time in the garden. The problem in putting me in the wheelchair before lunch is that I will have to stay there until 6.00 a.m..
I have received comments from time to time from a carer called Penny de Quincey. (There is no breach of confidence here as her contribution through the comment section of this blog) . Penny has very kindly agreed to share information about the life of her dear husband Stuart, who is, sadly, no longer with us. Penny seems the perfect model of a family member acting as carer.
Although everything that Penny had to do, including selling their house and moving into more suitable one, that could be adapted, had to be down in a very short time scale, the way she dealt with it and dedicated her life to making that of her husband as comfortable and peaceful as possible, her relationship with her husband Stuart, has to be applauded and is very similar to that which I am lucky enough to enjoy with’ my lovely’.
What follows today is an introduction from Penny, leading tomorrow to pretty much the situation in which I find myself today, way down the same path as Stuart, but with some suggestions of which we have not been made aware, which, if we can get them too, may well improve, the quality of my life, for the time I have left, We will draw these differences to the attention of our GDP or hospice contact and see if there would be any benefit to be gained should she decide to adapt them for me. Apart from anything else, this is a wonderful illustration of the effectiveness of this blog in sharing our experiences with others, who may well find themselves in the same boat, but without such excellent support.
Now to Penny’s introduction
I was a little apprehensive about sharing this, but on the other hand I am well aware that it took very careful planning, and very straight talking, to achieve this end for my dear man. The fact that it was possible, and that he died peacefully and unafraid at home is a great comfort to me.
I am more than happy for you to use this as you wish. If it helps even one person to an easier end, and is in any way reassuring, I will feel it has been worth writing.
Our medical team were VERY happy that Stuart had made his wishes known well in advance. It meant that they knew exactly how to manage things for him, and were all aware that he didn’t want to be kept alive when the quality of his life deteriorated to an intolerable (to him) extent.
Everyone was very respectful to his wishes, as of course they must be now that the Advance Directive is legally binding. In passing I should say that if you would like to have a copy of Stuart’s Advance Directive I would be very happy for you to have one. the wording was advised by MDA and it sets out in no uncertain terms what his wishes were.
I am happy for you to use my name of course. I kept my maiden name when we married in 1986. Stuart would be happy if he thought that his experience might help someone, and I like the idea of it being a Memorial contribution.
Stuart’s name was HAGUE. He was born in 1935, and had a very healthy life, looking much younger than his years. In August 2010 he had a couple of unexplained falls, though we were not worried about it as he seemed to be very fit. In October of that year he noticed that his right hand was losing power and dexterity, and his right arm was also weak. Our doctor referred him immediately to Ipswich Hospital where he had a scan and they diagnosed a minor stroke (although there was no evidence on the CT scan). After a couple of months of physiotherapy his arm was getting worse and there was a slight drag in his right leg.
Well, he gradually got worse and was sent for more tests, but it was not until June 2011 that he was finally diagnosed (though I think we suspected before that).
He was put on Riluzole, but stopped taking it as it made him terribly sleepy all the time. The progress of his illness rapidly accelerated at the end of 2011, and by Christmas he was using a wheelchair most of the time, even at home. He could still use his left hand and arm a bit, though increasingly needed help to eat. Early in 2012 his swallowing started to become badly affected, and his speech very quiet. His breathing was getting a little worse, but not noticeably so. He died on 12th March 2012. You can look at photos on his Tribute Fund page at St Elizabeth Hospice, but I will attach one to this email so that it seems more personal
We should all feel very grateful to Penny for sharing this very personal experience. Tomorrow I will complete the information shown sent to us, when she deals with the JUST IN CASE kit and says a few words about the Hospice at Home, all of which MND patients and their carers should be made aware.
13 July 2012
As I promised yesterday I did search & find the anecdote concerning golf which is and can now be found at the end of the anecdote index under the title of My Introduction to Golf. This is well worth a read if you want to have a good laugh at my expense.
Our first visitor today was Diana Zurlinden (Di) who bought me a beautiful pineapple. Pineapples were rare and expensive in the 18th and 19th century and many a stately home has a carved or moulded pineapple on each of the columns supporting the main gate as a sign of welcome and hospitality. Somewhere in this blog I recounted how I had eaten my first pineapple, after the war, in Singapore, on the way to Australia in 1955. I had never tasted pineapple before and greedily consumed a whole one, sitting around the pool at the British Club.
It must be remembered that rationing in the UK was not lifted until 1952. I have no doubt that after that. Pineapples were available for some exorbitant price. Certainly they were something I would not be have contemplated buying on my limited income. You can imagine therefore the excitement I felt as a 21-year-old, flying out to the New World-which took two days with a compulsory stopover somewhere, in this case Singapore -during the stopover we were allowed to go into town and that’s how I found myself sitting on the pool in the British Club and observing a whole fresh pineapple being delivered to another couple sitting close by on their sunbeds. I boldly ordered one for myself without having any idea what it was going to cost me. We can all laugh today over such a trivial matter, but exotic fruit was terribly expensive at this time. The only evidence I have of this is the six strawberries I bought at Fortnum and Mason’s in early 1963 as a gift the matriarch of the family, Alice’s grandmother, on my tour of introduction to the family. I can remember to this day that they cost 11 shillings (55 p) which was quite a lot of money by today’s standards. This all might sound ridiculous in these times of plenty, but in 1955. this was entirely another matter. I forget now how much this pineapple cost me. In didn’t break the bank but I seem to remember that it was equivalent to the best part of weeks wages.
My favourite way now of eating a pineapple, is to cut it up into chunks and eat it with a ripe brie -cheese and pineapple make a wonderful contrast of taste.
Our second visitor today was’ Paul the computer ‘for a babysitting’ stint whilst Alice went out on some of her day-to-day missions – the bank;; the post office; Waitrose’s etc. during the three hours that Paul spent with me. Today we managed to create an index of all of the Anecdotes, Instead of having to scroll through page after page of anecdotes to find the one you wish to wish to read, you now merely double-click on the anecdote in the index and it will take you straight to it. This is something I’ve wanted to do a very long time and I’m delighted that that is just another refinement on my blog which makes it easier for the reader. Having made the process of pulling up specific Anecdotes, I thoroughly recommend these to the reader, which will give them a greater insight of what sort of person I am than perhaps the daily diary of what is going on 40 to 50 years later.
The other the shocking item in the news today, was at the conclusion of the trial of people involved in the tragic death of a young man.. The central figure in this tragedy was a 26-year-old young man who had a problem with his kidneys which required a constant topping up with water. He I found himself in hospital needing a drink of water. I am not aware of all of the facts but, as I understand it, he was getting no response his alarm to the nurses station and became desperate, telephoned the police and ask them to chase up the nurses to bring him some water. Sadly, it transpired that there were too late. Although got his water. He died two or three days. later. A terrible and totally avoidable tragedy.
It is for this reason typically that I live in fear and dread of being taken to hospital as I do not believe I would get the same instant response from the nurses that I get from my night carers. Every now and then, at night, I wake up with a pain which if left for 5 min. will have grown more and more intolerable.
At present I am fortunate enough to just press the alarm and within seconds, the carer is there to firstly, turn me on my back and then a few minutes later on the opposite side to that which I was lying on previously. The outcome, from my point of view, is that I have almost perfect nights and am certainly sleeping a lot longer than I have many years. If for some reason I was carted off to hospital. I can imagine the nurses responding to the first and second call for turnover that then making me wait If my alarm call was to close to the earlier one, during which time the pain may have come become unbearable. I know that the nurses would get away with any claim on the grounds that I wasn’t the only the patient they had to attend to in an a hectic period other activity and I had to be more reasonable in my demands..’ My lovely’ has promised that she will not allow me to get into this position and would come with me in the first instance. if it became absolutely imperative that I went into hospital. She would make sure that I was getting the treatment and the attention, that I needed. I trust her but it does not make me feel less anxious.
All of my regular readers will know that this anxiety is fairly new. Perhaps emanating from that first disaster when the air pipe became unattached from the pump and I found the respirator planted on my face cutting off any external air supply and I felt as though I was going to black out. I’m pretty sure that my anxiety stems from that incident.Before that I was more relaxed about the whole business. Apparently, in the emergency ‘just in case’, kit provided by the hospital, there are some pills which are specifically designed to calm d down an anxious patient , or, as it says on the box ‘for agitation’. These are Lorzepam 1m.g and it is recommended that has taken three times a day. Whilst I refuse to be sedated like a zombie. I have agreed to try out these pills and see what difference they make. I had the first this morning and will report back on the effect in a day or two.
For your diversion today I reproduce an e-mail I had entitled Sleeping with Mick which is meant to illustrate the wisdom of old age. Click here and see for yourself
12 July 2012
We heard today from Addenbrookes Hospital that there is no need for me to attend anymore quarterly assessments. Alice was told that when a MND patient gets to this stage, in the disease, they usually carry out this assessment by telephone and then, if necessary, send out a palliative care nurse to attend anything which comes out of the telephone conversation, which requires following up. Whilst in many ways it is a relief not to have spent almost a full day on this assessment, a few hours of which may well be waiting for an ambulance to return to home, I cannot help feeling that it is now a stage, in the MND where there is little more they can do for you. Another nail in my coffin!
Aother sign that the end maybe nigh is ‘my lovely’ has begun to urge me to have a glass of champagne at six o’clock instead of my usual whisky. When I questioned this she said that I had 24 bottles left, but left unspoken, what was clearly on her mind, that I might just as well get stuck into them while I can!
Yesterday I was writing about readers, particularly new ones, making sure that they were aware of, and read, the Anecdote section of the blog as many of the personal stories recounted I believe shown an insight into my life which might not be so clearly presented from the daily blog entries themselves. I promised you that I would list all the anecdotes for you, so here goes.
Rugger Days – This is significant as it explains why, as a teenager, I was exempted all physical exercise due to being frail and how, after having my tonsils and adenoids removed, which had apparently been poisoning my system for years, I felt strong enough to participate in some sports or other. I was attracted to the idea of playing rugby, despite never having touched a rugby ball in my life before, with the Scottish father, I was drawn towards the London Scottish rugby club, which was at its zenith at the time. Read then how, after reading a book, How to Play Rugby Football, I presented myself to London Scottish and was immediately chosen to play in one of the senior teams with disastrous results. Read more…
Jamie Oliver -Eat Your Heart out – Regular readers will know that Jamie Oliver was born, or certainly lived, at the pub, at our gate, so I knew him for many years before he became internationally famous. This little story is a very amusing tale of my attempting to bottle 30 Kilner jars of plums, to be a surprise for ‘my lovely’ who was away at the time.
Following a 1940 wartime cookbook and not being able to get Kilner jar rings of the right size, this whole enterprise also ended up as a farce. This is one of the funniest stories I have ever recounted and I commend it to you. Read more…
New Year’s Eve – This covers how I celebrated New Year’s Eve as a student at the Chelsea Arts Ball to the other extreme at the Union Khormakser Club in Aden, the southern Republic of Yemen. Read more…
The Cricket Match – This is an absolute must for all those who follow cricket. Remember what I said in Rugger Days above, about not playing a sport because I will not physically strong. This story then recounts how I played my first game of cricket at the age of 70 in Kelara, an Indian state situated on the south west coast of Malabar. This is an absolutely hilarious record of this astounding match. It was all part of a wedding celebration for a couple of my good friends, the Brintons. Read more…
World Monopoly Champion. -Yes, I really was joint world Monopoly Champion in 1977. Read how to be one up on a one -up man (shades of Stephen Potter). Read how, over something like 12 months and eight rounds we found ourselves under the glare of television and radio at the Savoy, London battling our way through to a triumphal win. Read more…
Treading the Boards at Sadler’s Wells – for those opera lovers amongst you, you will scarcely believe how I played a part with this internationally known opera and ballet company with little knowledge of the operas in which I appeared, relying on my co-performer, Big John, to tell me what to do, standing in the wings each time we were due to appear. This is scarcely credible it is absolutely true. Read more…
China and Thailand – this is an account of one of my many visit to China, incorporating my lectures in Beijing. On this occasion the good Doctor Michael from Australia, accompanied me. From India we went to my favourite hotel in Thailand, the Anantara, in Hua Hin. Read more…
Mark Cato- the life of his carer in China and Thailand, October 20-November 5, 2009. – Unbeknownst to me, the good Doctor Michael was e-mailing, to his family, details of our lives together in Thailand. It was the other side of the coin. Where I seriously believed that I was being unselfish and considerate about disturbing Michael for something I could not manage to do myself, Michael saw a grumpy selfish old man who was a pain in the butt from time to time but still managed to enjoy a fabulous holiday. If you have the time to read this account following the earlier one-China and Thailand -it is an object lesson in the life of a carer compared with the genuine account seen through the eyes of the patient. Read more…
The Top 10 of Everything – a fascinating list illustrated this the biggest, fastest, the smallest, the heaviest etc an impressive list of currently useless facts, no doubt, useful in a pub quiz but, nevertheless, still worth a glance. Read more…
Bananas – I had absolutely no idea how incredibly good for you are bananas. In particular the vitamins and minerals they contain.
We have all seen the champions at Wimbledon, when the pace is getting hot, snatching a big bite of a banana, which must convert to energy in a very short space of time. I guarantee after reading this you will make sure that bananas form part of your regular daily diet. Read more…
Old Farmer’s Advice – this is a bit like old wives tales, many of which you cannot help believing there is some truth in them. For example, Red skies at night, shepherds delight.Red sky in the morning, shepherds warning. In other words, the red sky at night is an indication that the following day will be fine, as opposed to a red sky in the morning, which forecasts rain. A number of the more common ‘.old wives tales, I explained in the Old Farmer’s Advice. Read more…
Astronomers Select Top 10 most amazing pictures taken by Hubble space telescope in the last 16 years.- This is precisely as described in the title The pictures are truly amazing and can be instrumental in making you wonder about creation, the Big Bang, and the existence of God. Read more…
Dubai Fountain – This has to be the most spectacular Fountain ever designed and I very much doubt whether it will ever be surpassed in terms of size and spectacular patterns it is not just a single jet of water, but hundreds of them, in five circles, each of the jets as high as 500 feet, choreographered, with changing light colours, from over 600 spotlights, in a lake of 20 acres. It has become a tourist attraction in Dubai being played every night at a certain hour. It is played with a musical accompaniment from, amongst others, Andrea Bocelli Con te partiro (Time to say goodbye). If I had to list the 10 wonders of the world, today, I almost certainly have to include this incredible spectacle.
Somewhere, in his hundreds of pages of blog, I describe my very first game of golf when I had to ‘play myself in ‘with the captain and another committee member of the Kingston Heath Golf Club in Melbourne. The only problem was I had never really played the game certainly not to the standard expected by this rather grand club . I had only put my name down at the behest of one of my friends, who was a member, told me that the waiting list was at least seven years long, by which time I may well have taken up the game. Read more…
11 July 2012
I’m pleased to be able to report that I got through last evening without pain or a nausea attack. This may well be down to a slight change in my medication recommended by Doctor West. Instead of just taking one Ranitidine Hydrochloride 150 mg tablet per day, the Doctor suggested taking another one first thing in the morning. On top of the lack of nausea my night carer reported that I slept more soundly that I had done for some time. So it looks as though it might be going in the right direction
One of my good friends from the golf club, Robert (Bob). Lederman saw the following report in The Daily Mail newspaper. Knowing about our Welsh connections, and Dolgellau being close by to where we have our holiday cottage, he could not let this
pass by without drawing it to my attention and expressing his bewilderment about the rubber gloves!
‘Petty thief Thomas Cato, 23, pictured, was caught pilfering a meat pie and a pair of rubber gloves – while on a suspended custodial sentence for burglary. A court heard Cato was responsible for 50 per cent of all recorded crime in his hometown of Dolgellau, North Wales,
with a population of 3,000 people’.
I was glad to put Bob’s mind at rest and assure him that the young Thomas was not one of my progeny. I was unable to put his mind rest about the rubber gloves.
Poor David Cameron, our Prime Minister, is having had a rough ride over his election pledge to reform the House Of Lords. There seem to be a variety of options from a fully elected house; one with 80% elected down to 20% elected. Peers will be elected for one 15 year term only. At least 100 Conservative MPs failed to follow the coalition government’s line so the Prime Minister has says he will have one more go at persuading the majority in parliament to support his proposal and if it is unsuccessful, on this occasion, he will draw a line under this issue, for the time being, as there are more important matters for Parliament to deal with.
This failure of the government whips to persuade at least 100 Conservative members to follow the party line, together with the liberal parties own agenda, questions the future of the coalition. Sooner or later the Liberals are going to have to flex their muscles as this five-year term approaches an end and a General Election is insight. The knives will be out with the Liberals campaigning on their own agenda, in some instances against issues which they have supported under the coalition flag. It is quite possible that the electorate will take the view that if they vote Liberal they might just as well vote Conservative in the first place, a conclusion which, no doubt, they Liberal party will vehemently deny.
There is a fallacy, predominantly amongst the male population, that men can do anything. Well, even when you are Prime Minister, we have seen this does not seem to be the case. Click here for some more mundane examples of the inability of men to do anything
10 July 2012
I’m sorry to have do record yet another emergency which occurred when the 6.30 carer came in last evening to get me ready for bed. When I was hoisted up I found my head was pointing down and my feet were right up in the air. As a result I could not breathe and panicked. Fortunately stop stop listening ‘my lovely’ was in attendance to respond to just such an emergency. Within seconds she had clamped the respirator onto my face and shortly after had the respirator strapping in place so I could relax giving the carer time to remedy the fault. Despite my reminding the carer that the voice straps were to be ‘long legs, short arms’ I think she must have got them the wrong way around. This, in itself, is unforgivable, if only all the carers knew what a panic it throws me into when I cannot breathe.
Yesterday wasn’t a good evening as I had a repetition of nausea, starting around 4.3 p.m., I think the worst yet. Certainly at one stage I felt the same surge of burning (or adrenaline) throughout my lower body and I was convinced I would vomit. But in the event didn’t and after a couple of hours the nausea had subsided sufficiently for me to eat a very light supper. I do hope that, Doctor West and colleagues can get to grips with this symptom, ASAP, as it is very debilitating.
‘ Bill and Ben’, our handymen, came round today to give my office a thorough cleaning. As it is no longer used on a daily basis, there is a possibility of mildew and moths, in the snooker table, which doubles as a boardroom table, which a good cleaning should eliminate.
Alice was on the war path today over the provision of a new sling for the hoist – one we’ve got is for a smaller person and cuts into my thighs – and a proper male commode. Both of which were left in Harriet’s capable hands about 10 days ago but so far there is no sign of either of them.
Bukhara stars as England make it. 4-0. Thus ran the headline in the report by David Hopps on the Cricinfo page. The fourth ODI, between England and Australia was seriously interrupted by rain and in the end, although Australia had scored 145 for the loss of seven wickets in 32 overs, the target for England, using the Duckworth/Lewis formula, was reduced to 138 in 29 overs when heavy rain interrupted play once more. Thanks to Ravi Bopara’s fine innings England won the match by seven wickets. with 11 balls to spare. Just one more in this series. to go with the win to England will mean a clean sweep.
Quoting from David Hopps once more, he says that Michael Clarke, Australia’s captain saw no excuses. “It was a wake-up call for the team.” He said. “England were class. A lot of our team have not faced an attack like that in one-day cricket.”
Today’s diversion is for the music lovers amongst my readers. It is a sacrilegious rendering of Carl Orff’s mediaeval poem Carmina Burana. The music is fine but the lyrics are translated to amuse. I must confess that measures I love this piece. I laughed out loud at some of the so-called translations. Click here if you know this music or would like to be introduced to it.