27 August 2012
Another Tuesday when I could have gone to the golf club but unfortunately Smiler was on his way home from Wale, so was not available to take me. The good Dr Michael will be with us this time next week, so, depending upon the weather, I might get there then.
When we changed over hoists, some weeks ago, and morning routine was also changed. We found that we had 10 to 15 min to spare, after we had done our bits and pieces, before the Ross nursing team came in to shower and dress me. ‘My lovely’ decided to put this time to good use and to read to me from such things as the parish magazine, the local paper etc.
This week we decided to be more adventurous and try to work our way through a book written by her cousin Bruce Kirkby, entitled Sand Dance. The book described the journey taken by Bruce and three of his friends across the Empty Quarter, in Arabia, following the route taken by the world famous explorer, Wilfred Thesiger
Both Alice and I were lovers of the desert, having lived on the edge of the Empty Quarter, in Aden, Southern Arabia. Thesiger journeyed across the is Empty Quarter which is described by Bruce as follows: the Empty Quarter is the world’s largest sand desert, a forbidding and foreboding territory. Surrounded by the parched wastelands of southern Arabia, It is a desert within a desert. Covering nearly 1,000,000 km² (386, 270 sq. miles), it occupies an area larger than France. Within its borders lie 20,000 km³ (4800 mi.³) of sand, more sand than in any other place on the planet – more than even the Sahara, which although six times the size has large tracts of rock and gravel. Ancient winds blowing for millennia have sculpted the Empty Quarter’s sand into mountainous dunes, many more than 300 metres (985 ft) in height. These dunes lie in chains that extend from the horizon to horizon, unbroken obstacles spanning hundreds of kilometres. Woven between the colossal sand peaks are vast sabkha (salt) covering the valley floors. The sabkha, a mixture of salt and sand baked to concrete by the desert’s heat, they mercilessly reflect the sun’s glare during the hot season, which runs from May to October, Temperatures in the Empty Quarter regularly saw past 50°C. The blazing sand services can reach 80 (175°F), searing anything that moves. Few living creatures can survive the summer months. No men live there year-around. It is a dead and empty land.
The only excitement today was the recently widowed, Alison Lambi, wife of Ian, my squash partner from those Aden days when we lived on the edge of this Empty Quarter, dropped in for coffee and a chat.
26 August 2012
Following on from yesterday’s entry about dying, there have been subtle changes in the attitude of people around me which point to the fact that they too accept that my time might be nigh. Whereas six months ago ‘my lovely’, bravely taking the stance that I might well have a year or two before me now faces the truth of the situation and asks me for such things as my preference for cremation or burial, this after a meeting with my stockbroker explaining our tactics for providing the right sort of income for her, after I have gone.
There was the reconsideration of the Advance Directive for the medics informing them of the circumstances when I would not wish to be resuscitated.
Then there was a perfectly correct question from my son, as to the contact details of my Webmaster and what provision has been made for the last entry. I told him that I had written it many months ago and I may or may not revise it but now, in any event he now it knows where to locate it.
All of my desired arrangements for a small family service followed by a Memorial service in London, some weeks or months later, are entrusted to son Miles, but with final say on the Order of Service and the choice of hymns to ‘my lovely’ other than one or two little personal requests of my own.
Whereas a few months ago there may have been some embarrassment had I raised these issues but now they seem to be sensible precautions with all my close family and intimate friends now seemingly prepared to accept that I might not be around this time next year or next month!
My will has long since been carefully prepared. One thing I learned from my good friend Dr James Snowdon Barnett was the concept of a Running Schedule for minor bequests. This, if you like, take the place of codicils. Each time you come across some small item, generally of little value, you can add that bequest to your Running Schedule.
To come full circle to the issue raised in the last entry, that of my attitude towards death and and has my attitude towards it changed recently? I think I can honestly say that it has not. If I were to block out all other distractions and think deeply on the subject I might find that deep down in my subconscious, I was more concerned than I like to admit but unless I carry out this exercise I shall never know. Frankly, I’d prefer to follow the whole thrust of this blog and live for the day (Carpe Diem).
What I do not want is for my readers to think that where, all this time, I have been determined to take an optimistic on my situation that I have suddenly changed and become pessimistic. That conclusion would be entirely wrong. I am only being pragmatic in considering the sort of issues that I have listed about and the fact that I can do this emotionally is, itself, proof that I am maintaining my positive approach to dying.
In all this is very important to consider the feelings of your family and loved ones who might well have a different view to you and to the prospect of your death. All you can do is to try to convince them that you are not afraid even without the comfort of believing in God.
Just to satisfy those readers who are still doubtful about a change in my attitude towards dying and proof and I’ve not lost my sense of humour Click here
25 August 2012
With all this talk of anxiety and the need to medicate me against it, I wondered why, after living it with the consequences of MND, for five years or so, I should now find myself anxious, or worrying about it whenever the question arose.
I suppose it was because when I was diagnosed I read various descriptions of the disease and the effect it was likely to have on me. I believe it was the emphasis on the fact that every patient was different and therefore the timescale of events vary from patient to patient and, that being so, I took the optimistic approach and assumed that the various stages of the disease would occur later rather than earlier. That, indeed, is what has happened. The deterioration in my case has developed fairly evenly over the last five years. Bearing in mind that all of the articles one reads, about the effect of MND, say, as a rough guide, show that 50% of MND patients died within 14 months of diagnosis and the rest within five years. To show how random a guide this is, I know personally of one young man who contracted the disease and died within nine months. I also know another gentleman where the disease stopped at his waist, in other words only affected his legs, and that was 20 years ago. With such a wide range of dates I always optimistically opted for the longest. Well, I have now reached the end of the generally accepted period, where all MND patients should have died i.e. five years. After that it’s anyone’s guess for the random few who beat the odds.
I suppose thinking about it made me realise that I was far closer now, to dying, than I was say five years ago. I have always said, when the subject was raised, that I had no fear of death. That, indeed, was the case. The truth of the matter was I’ve never given it very much serious thought. The majority of time when the issue was raised, was when I got into a discussion about God- that is if he existed or not. I always took the view that although I’m not a serious Christian, as I could claim to have ‘played by the rules’, that is, observed the 10 Commandments, I might be forgiven for not having been to church every Sunday. In any event there is nothing in the Bible, to the best of my knowledge, about churches or having to attend one once a week. So far as I recall all the Bible says about congregation of people who have gathered to worship God was, when two or three are gathered together …
So, where does that leave an unbeliever? Well, clearly if there is a God and you present yourself at the Pearly Gates, the likelihood is you might be rejected. On the other hand, if there is no God, which is what I believe, then I will be no worse off having not believed. These deep and serious questions, which in the past have tended to become the subject of discussion at the end of a good dinner party now assume a different mantle as, like it or not, I am going to find out, sooner rather than later. When I say sooner, it has been made clear to me that I could go (die, depart, expire or simply,’ drop off the perch’) at any time, then the question becomes more serious than a topic one gets stuck into after a good meal. I say all this now as justification for an increase in my anxiety level. Having said that it must be a subconscious anxiety as I have never consciously given the subject much thought, that is, until now. It is more than possible and the increase in anxiety is that for no apparent reason I find myself, most evenings, what one might describe as edgy. Unable to settle down comfortably. Nervous about bed time; the hoist ; choking on my food or pills. In other words nothing to do with dying at all.
Smiler and Kimberly came to lunch and before they left I was able to use them to help me to sort out the muddle, I got into posting various blogs entries. It was the sort of job you needed to have three hands for and as, I do not have one, I was at a serious disadvantage!
24 August 2012
A personal problem many elderly people have to deal with is incontinence. If one is a prisoner in a wheelchair with little or no use of his hands then there are entirely reliant on others to assist. them. I’m glad to say that I have a excellent control over my bladder since my radical prostatectomy in 2000. Although immediately after this operation I had no control at all and was fitted with a catheter and leg bags etc. The regular reader will recall that I was subsequently fitted with an artificial urinary sphincter. This in conjunction with the pelvic floor exercises which I started following the operation in 2000, proved adequate enough for me to control my bladder to apoint when I could stop urinating in full flow.
As the artificial urinary sphincter has jammed, half opened half shut, (see entry) this happy accident in conjunction with my pelvic floor exercises has enabled me to the pee quite normally. I had noticed however that when I was working on my laptop, and had to lean forwards and sideways, I would occasionally feel a greater urgency for a pee than before bending. This, presumably, is because the action of bending forwards and sideways actually squashes the bladder giving you the sensation of urgency.
One of my greatest fears is that now I have not control over my limbs, I would also lose control over my bladder and they become 100% incontinent with all that entails (although when I broached the subject with Dr Chris Allen, who headed up by Assessment Team at Addenbrookes, he assured me that MND did not normally affect bladder or bowels..
When the artificial urinary sphincter device was first fitted at London Bridge Hospital in 2002, the Surgeon thought that the life of the device was around 10 years, although there were too few people who had had operation carried out to give a reliable prediction. I am now at that ten-year point which adds me another factor of anxiety.
As my early-morning carers were fitting the sling to the hoist this morning, pushing me this way and thither, I suddenly realised that I was peeing, I had momentarily lost control of my bladder. The good news was that I was able to stop peeing in full flow. I make this confession in order to help other patients who might have a propensity to incontinence to encourage them to do the pelvic floor exercises every day – they only take a few minutes and can be done lying down bed – so as to avoid the inconvenience and discomfort which can come from incontinence at a later age.
As a matter of record I cannot honestly say that the additional lorazepam made any noticeable difference to my feeling of agitation during the evening although it may have been the cause of sleeping far more soundly and perhaps why I felt more weary during the daytime.
Now, to quite the opposite of weary. Do you remember those big dippers which would be found in most amusement parks?. You were terrified to ride it, but egged on by your friends you succumbed and admitting to being terrified at the time but found the whole process exciting. I invite you to click here for the ultimate ride of your life . I can honestly say that there is no way you would get me anywhere near this. It seems that some people also had a problem with their bladders. Apparently hanging as a same effect on the victim!.
23 August 2012
According to the night carer I had the best nights sleep yet. In effect I was heavily sedated so the outcome was not surprising. From about lunchtime on yesterday, for no apparent reason, I felt agitated. I could not get comfortable; I could not scratch an itch; I could not get myself in the right angle to use the telephone; etc. In effect I felt that the whole business of using the laptop was just becoming too much. This is ridiculous after all the years I have used it. Of course, this was nothing to do with the laptop so much as my state of mind. ‘ My lovely’ recognising that I was not myself decided to increase my intake of lorazepam, or, what we and have come to call,’ my anxiety pill’.
There is no apparent reason why my anxiety, or agitation, should have increased so significantly that I needed something to’ calm me down’. In any event, ‘my lovely’ noting that I could take four of these anxiety pills each day and today I had only taken two, decided to increase it to three until such time as she could speak to one of my consultants. Accordingly I took the increased dosage but without any obvious beneficial effect-the decision having been taken late in the day – and the degree of agitation lasted until bedtime. We will start the new regime of pills midday tomorrow.
What do you part of the problem can be put down to a deterioration in my breathing. I can only liken it to a fish out of water. My mouth opens and shuts every second or so taking in fresh air I just hope that when we consult Papworth again, the doctors there will not say that I need full-time daily air intervention, or put another way I will need to wear my respirator all of the time.
I have been having a frightful time with my laptop, or more specifically with Dragon in conjunction with Word. Half of the time it does not recognise my oral commands and the rest of the time it is serendipity what files in opens. Frequently in attempts to send e-mails some unsuspecting recipient Hall, it will open up a game of solitaire and so on. All very frustrating as it seems to have reverted to the original travel that we spent six months or so trying to sort out with the Dragon team, clearly, without success. Luckily for me, Paul’ the computer’ came this afternoon and sorted it out for me.
For an amazing story from a flight attendant on Delta Flight 15 on 9 /11 click here.
22 August 2012
Sleeping well. Whether this is the result of adding the second anxiety pill or not I cannot tell except that I certainly feel very wearily most of the time and I can only put this down to be slightly sedated by my medication. Also, I seem to dream more than I did previously. Last night, for instance, I had a very scary nightmare.
I’m still receiving the odd kind e-mail wishing me all the best etc for my birthday. I must admit readers from all parts of the work and reading extremely kind in sending me birthday greetings.
Having had an abundance of pleasure from watching the Olympic Games, but nevertheless being slightly relieved when they were all over-an instance of having too much of a good thing-we now had to go through the whole process again with the para-Olympics. I am ashamed to say that I cannot get very excited about this. You would think of all people I would be strongly of disabled people having their own Games. I and to the extent that I admire all these individuals who have fought back from some horrendous disability in order to participate in an international context. I am, in general, but have a great deal of difficulty swallowing the system of perhaps a disabled person with a fine physical body but has perhaps limited sight, swimming against another disabled person who may have lost a limb or one who is to all extent and purposes normal but suffers from a learning disability. However, do you handicap one against the other. I noticed that in the last Paralympics one or two competitors seem to garner a great number of medals between them, perhaps giving life to my suspicion that handicapping these brave competitors is almost an impossibility.
The torch procession has been reduced to a much more manageable level in that it is only visiting half a dozen major city locations in the UK. Maybe this is indicative of the sensible scale down of the whole process.
I do hope that my readers accept my approach over the past few days in reproducing comments from my grandchildren’s birthday greetings, or from other readers. I have included these in order to maintain the common touch, in reproducing what each and every reader might also feel. In other words, there is nothing special about me that any of my readers could not match in a response from any of the friends and colleagues..
I’m pleased to report that today and tomorrow are both quiet days. This probably sounds very ungrateful for those friends make the effort to come and see me but, the honest truth is that I find talking for any length of time, to be totally exhausting and one could hardly invite people here and then say nothing. As we have a number of visitors-mainly medically connect-, a quiet day, with no visitor, is a blessing Not only for me but also for’ my lovely’ who can go for several without having any arrest in the afternoon. These quiet days give her an opportunity to catch up. From my selfish point of view. It also gives me an hour or two of companionship which I would miss if she was out going about her business.
21 August 2012
Enough of birthdays. To conclude with some prose ( or is it a poem?) from that good Dr. Michael, celebrating our long friendship.
Mark,
Thanks again for last Saturday, your birthday, and so much more.
Perhaps you did not see, my entry that day, in your visitor’s book.
“To celebrate life and a life”.
Well that is what we were doing that day.
One more adventure – of the many we have shared together.
It is difficult to believe that the magic of our friendship began through the chance meeting of our mothers, in a London hairdresser’s more than 58 years ago.
No doubt you are aware, how Saturday brought together, many of your friends, new and old, all beneficiaries of your generous spirit.
I sensed we were all part of a team held together by a rich bond – you!
The way Lords entered into the spirit of you being with them, was extraordinary.
How Steve and his team looked after you and the others – and friends – was an example of just how that can and should be done.
I passed through Sweden and Löa last night.
Your many friends there, send their greetings and love.
Now I am in Germany with the Schneiders who pass similar warmth and sentiments. Nils, a special and young admirer sends his love. He is always asking about you.
So, our rich lives go on.
” ..The woods are lovely, dark, and deep,
but I have promises to keep,
and miles to go before I sleep,
and miles to go before I sleep
Robert Frost’s lines apply to us.
Now for the next 58 and more years.
We – you and I, have been fortunate for so many things, but nothing more than our friends and friendship.
Love,
Mick XXX
20 August 2012
Yesterday, I asked the question, what do you give a man who has everything? To give you an idea. I mentioned one or two of the clever idea is that my family and friends came up with. From’ my lovely’ was the baby aquarium and as I sit here I can see Goldie and Wander happily swimming amongst the weeds.
Miles and Kimberly produced a bottle of English pudding wine and two bottles of English liqueurs, one made from black predators and other from what you know not except it has some ginger in it, in order to jazz up the spicy nature of the drink.
Chloe, came up with the idea that she would sit down with me and Amazons catalogue and choose some films or books together.
My dear nephew Tom brought me a beautiful picture of Arthur Mark –their youngest, whom I am proud to say carries my name – in a nice leather frame.
My other family and friends, whose present I have not mentioned, I apologise, but it does not mean that it was a new this appreciated by me. However, I should just mention Ollie and Davis present, as I mentioned earlier, it was a Syrian flaky pastry pieces soaked in honey, so similar to that which I brought back from Cyprus.
As I said earlier I do not intend to give a blow by blow description of what turned out to be one of the best Test matches yet. When it came to the fifth day when England needing 351 to win, the task looked impossible. However, as the day wore on the English team realised that a win was within the grasp and so started hitting out and narrowing the the deficit.,
This very fine test match finished abruptly with the sudden loss of England’s last three wickets when they only needed 51 to win. With a good number of overs in hand there doubt they could have won this match, smashing all the previous run chase wins , the highest being when England beat Australia in 1928 with England needed 315.The star on England’s side was Prior, with a magnificent knock keeping England’s hopes alive before he was bowled out for 70. The South African star was undoubtedly Philander’s five wickets for 30.
By virtue of this win South Africa displaced England as number one in the world rankings . For the record England lost this series 2-0.
A wonderful celebration for my 78th birthday, beautiful whethe weather,if a little too hot, wonderful cricket and best of all, surrounded by loving family and friends.
19 August 2012
Yesterday, being my special birthday trip to Lord’s, in effect, Jane farewell to 30 or 40 my very old friends it up since I first became a member almost 40 years ago four months. The actual cricket became secondary and for this reason I did not memorialise the details the promise to do so today.
This Test Match is the third in this year’s series against South Africa. To date we have won one all so the outcome of this present match will determine who has won the series. But even more seriously for England is bad loss against South Africa will mean being dislodged from the number one spot in the world.
My birthday yesterday marked a critical stage in this third and last test.
Winning the toss South Africa had decided to bat first and after a shaky start reached 309 all out. England’s reply was on similar lines do the South African innings when both teams, coincidently were 54 to the loss of four wickets. England battled away and managed to pass, the South Africans score by six runs. So at this stage it was all square. South Africa and then went in for its second innings and were all out for 351 about 15 min before normal close of play. However, due to time lost to rain the South Africans exercised their prerogative and decided to bat on an extra hour. This decision paid off handsomely as South Africa’s took two wickets quite cheaply-Strauss for one, and Cook for three. It then became a question whether England could survive the fifth day -there being very little chance of winning and the most likely outcome being a draw.
Historically, the outcome was against England. The highest any team had achieved a run chase of more than 315 note back to England the Australia in 1928. I shall obviously watched the conclusion of this nail in .biting finish where there is so much more at stake than just winning or losing. A loss by England would be sufficient for them to lose their number one world ranking.
I must not forget my birthday greetings, some of which came from Australia and America. As for presents. I can only say that old cliche’ what do you give a man whose got everything’?. ”My lovely’ solved the problem by buying me a large kiddies aquarium with two beautiful fish, Golden and Wonder. A fun present and one that I can see could be very therapeutic. As they glide, back and forth amongst the weeds, in itself has a very calming effect.
I’m not going to detail all of the other presents I received other than to say how touched I was to receive a present from Ollie and Debbie, of Ollies Friendly Wheelchair Service, it was by way of being a box of original Syrian sweetmeats not unlike the Italian version of flaky pastry soaked in honey.
To finish this entry I’m going to record what each of my three grandchildren wrote in their birthday card. As I am only too aware that children of this age tend to bluntly tell the truth, you cannot force them to love you. There must be a bond of true affection and love between you and them. For this reason the sentiments, expressed in their own fashion, in the cards, mean a great deal to me.
From Frederick, the oldest, at 13.
Dear Grandpa
I wish you a very, very, very good birthday and that you get lots and lots of great presents!
We all love you so very much and can’t wait to see you soon!
You told me loads of interesting facts that I will keep stored away for when I need them.
I have never great day and that this is one of your best birthday yet.
Lots and lots of love.
Fred
XXXXOOO
From Sebastian age 11
Dear Grandpa
I hope you have a wonderful birthday and are surrounded by friends and family. I’m so sorry that we won’t be here to celebrate but I look forward to seeing you soon.
Happy birthday.
Lots and lots of love.
Seb
XXXXXOOOOO
From Lara, 7 years old.
Dear Grandpa.
I Hope You Have a Wonderful Birthday.
—————————————————–
HAPPY BIRTHDAY
————————————————–
I love you so, so much! You are the best ever grandpa in the whole of the universe.
I hope we have lots of lovely Birthday Presents and lots of birthday cake. I wish this is the best birthday yet.
I love you so, so, so, so, so, so, so, so, much.
Lots of love from Lara XXXOOO
What’s more could a 78-year-old wish for?
18 August 2012
Well, I made it or rather I should say we made it from carers and the good Dr, overseen by a day ‘my lovely’ and then Ollie taking us to Lord’s meant and I had reached my 78th. birthday and achieved my ambition of being there for the third of the test matches between England and South Africa.
Ollie picked us up at 8.30 and got us to the ground just after 10 o’clock. I went to our usual spot and most of the gang were already there, James Barnett; Paul Newman; Jeremy Brinton; Roger Goodwin; MC Patel. the very friendly and kind Steve Crocker – who supervises all of the wheelchair positions – who had, very kindly, as usual, made sure there over half a dozen seats set aside for me and my party. My special guests for the day were Tom Grand, one of my nephews, for whom I have the greatest affection and his brother FH (Francis Hector Grand) who apart from being my nephew is also my grandson to whom I equally enjoy great affection. The presence of these lovely people – and a number of others I have not mentioned- also came up during the morning to pay their respects, to give me a kiss or a hug, made this into a very special day, particularly as I know in my heart, as indeed some of the other people there realised, this was almost certainly my final appearance at Lord’s where I had been a member of 39 years and made a great number of friends.
It was certainly a sad moment when I trundled out in my electric chair, with dear Tom and FH, Paul and Roger hugging me as best they could in the wheelchair and administering the odd kiss to my cheek or shiny pate, as if to say goodbye. They knew, as well as I did, that the possibility of me making it next year, was most unlikely.
I always said I would try to make this match provided it was not too cold or wet. What I had not envisaged was that it would be the hottest day of the year with our little corner of the Warner Stand in direct sunlight, around 30°C. I managed a couple of hours in sun and then retreated to the shelter of the tunnel between the Pavilion and the Warner Stand, from whence I was able to see both two wickets, and able to cool down.
At lunch I trundled out to The Lawn, behind the Warner Stand, and enjoyed some of the hospitality on offer from my dear friends
Bob and Geoff Lederman.
I realise that so far I have not mentioned the cricket. I decided quite deliberately not to make the cricket the key part of this entry as, although it was excuse for going to Lords on my birthday, the whole experience turned out to be far more emotive than I had originally envisaged. Thus although I will pick up the state of the match in tomorrow’s entry I will say no more now than it was a fine game of cricket, voted by one commentator as the best this season.
Resuming then, after seeing the Ledermans, Michael and I returned to the shady tunnel to watch the match and then, at the tea interval, departed for home. For the journey the good Dr put the respirator on me and I slept all the way home not waking until the ambulance pulled into our drive. I was clearly pretty exhausted.
Michael telephoned Alice as we approached home and asked her to ring Ross Nursing who produced Craig in record time, which was just as well as I was getting desperate for the commode!
So, having looked forward for months to this outing on my birthday I can truly say that it turned out to be everything I had hoped for. The one aspect I had not envisaged was the feeling of farewell and I know that a number of my good friends who came to see me off were silently feeling the same way.