May 2008/January 2009
I went on pretty much as normal over these intervening months but with progressive weakening of my hands and muscle wastage of the arms. Both hands were very weak with the right-hand fractionally stronger than the left.
I could no longer manage buttons or zips or any action that required the use of my forefinger and thumb together. For example, I could not manage to lift a heavy file with either hand. I sometimes had to ask a shop assistant to help me remove my wallet in order to pay for a purchase. On one occasion I asked a policeman if he would be kind enough to tie my shoe lace which had come undone in the London Underground. All of this was extremely frustrating as it was not only a weakness of the hands but also an overall body weakness which did not auger well for the future.
Having said that I did manage to go to China in October to deliver my annual lectures to CUPL and enjoy a week, on the way home, in Hua Hin, Thailand, in the company of my doctor friend, Michael Long. In the week before the lectures I went on a mountain trek in southeast China and on one occasion found myself stuck at the top of a mountain faced with a 7.5 K walk down, while suffering from extreme pain with what was ultimately diagnosed as a hernia under the pipe work of my artificial urinary sphincter. This was successfully operated on in November prior to a fortnight with my good friends the Brinton’s in Dubai.
In December I played my last game of golf at Royal Worlington as my hands could no longer sustain the weight of the golf club. I resigned as a playing member after 32 years – a very sad day.
Over the intervening months I have been very fortunate in establishing a good relationship with the mechanical engineering division at Addenbrookes Hospital where we have worked on a number of gadgets to assist me to lead a near normal life. I designed a remote-controlled electronic device located on a thigh strap to operate the control pump, of the artificial urinary sphincter (AUS) in my scrotum. In working with the engineers, on developing this device, I managed, through clumsy handling, to knock out the control pump of the device (AUS) altogether. In other words, I found that it was permanently open. This was very alarming as I then expected to find myself incontinent and faced with the prospect of having to resort to leg bags again. The day on which I discovered this I went to bed, having put a rubber sheet on the bed, wearing a nappy overnight. I was pleasantly surprised in the morning to find that I had not leaked, as I thought I would. The following day I wore normal underclothes with no protection and again, no significant leakage.
It seems that a minor miracle had occurred. The medical explanation was that the artificial urinary sphincter was acting, in conjunction with my own pelvic muscles, and retaining the urine. As I write this state of affairs has now prevailed a couple of months and I pray will continue. The point being that my hands are so weak now that there is no way that I could grasp my scrotum in my left hand, locate the control pump and operate it by squeezing it with my right hand.
Without this miracle I simply would not be able to venture far from home, as I would require assistance to go to the lavatory. There are clearly limits on what you can asked even your best friends to do for you. I can see the headlines now, Professor arrested after a accosting stranger in public lavatory.
What of the future? I’d now deeply into finding gadgets to enable me to lead as normal a life as possible. The MND support unit has said that I may lose control of my hands altogether within two or three months, followed by my arms.
Heaven knows how I will manage when I reach that stage. I am already looking at gadgets to help me continue to use my laptop as well as ways of continuing to feed myself, although even this may ultimately prove impossible. Will this mean I can no longer attend meetings of the Arbitration Club, in London, for example, or will I get my colleagues to feed me?
One problem I have solved is how to deal with wiping my bottom when I no longer have the use of my hands. I have found a foot operated unit, that can be fitted on top of my own lavatory pan, which will initially wash my bottom, after I had done my business and then gently dry it with warm air. At least I will be spared the indignity of reverting to babyhood in that area.
9 February 2009
Off to Australia, to stay with the same friends as last year and then onto Thailand, with Dr Long for a week, on the way home. Apart from requiring some assistance with dressing, provided my hands do not significantly weakened further during these intervening weeks, I should manage. After that I can only take it week by week. There are a lot of people out there willing to help, – occupational therapists, computer experts the MND Association, etc. but at the end of the day, much of it will be down to me personally.
In the meantime I have been busy designing gadgets which will not only help me but also other people with weak hands – arthritis sufferers, stroke victims, people with Parkinson, etc. My latest idea is for a feeding frame which can be very inexpensively mass-produced and, which I believe, will be of great interest to hospitals, care homes etc. or to anyone having care of infirm geriatrics.
While I was in Australia I had a videoconference with my team leader of XXWorks and she appeared to be very enthusiastic and encouraging. It is an exciting project.
2 August 2009
After hearing from Michael, I was able to confirm the flights with the travel agent today for the trip to China and Thailand in October. I just hope I don’t deteriorate too much in the meantime as, at my age, it is almost impossible to get travel insurance at anything other than a ludicrously high premium and therefore I am at risk for the not insubstantial airfare, if, for any reason, I am unable to travel.
I very recently finished a fascinating look about China, given to me last Christmas by son Miles – it was a heavy book in both senses of the word, Jonathan Fenby’s History of Modern China –The Fall and Rise of a Great Power 1850 – 2008, published by Penguin. It took me a long time to read the 800 odd pages but it was well worth the effort and has given me an even better understanding of the functioning of modern China than I had even after my 10th visit.
I particularly liked Fenby’s description, towards the end of the book, of China’s system of government as one ‘of bureaucratic capitalism, underpinned by force and marked by exploitation, with little time for fostering human happiness in anything other than material terms, as the last major Leninist state, only with Chinese characteristics; as a nation whose impact is changing the world but which remains deeply unfathomable as it’s own rulers grapple with the problems of unprecedented size.’
China’s role, and that of India, on the world stage, in the 21st century, has exercised my imagination for some time. Consider this comparison of these two emerging giants:
| China | India | |
|---|---|---|
| Population | 1.6B | 1.2B |
| Life Expectancy | 71 | 68 |
| Adult Reading | 93% | 60% |
| Infrastructure (per head off population?) | $7 | $1 |
| Manufacturing Jobs | 150M | 10M |
Under five-year-olds are twice as likely to die in India than in China.
“To get rich, first build a road” Chinese Proverb.
This information may not be entirely up-to-date but it does give a fascinating insight into these two emerging economies. The socialist market economy of China and the largest democracy in the world.
Unfortunately, for the life of me I cannot remember where I got this information from. Perhaps someone can identify it for me and I will attribute it in a subsequent version of this blog.
5 August 2009
The die is cast. I took the plunge today and booked the flights for me and my good friend, Dr. Long to go to China and then onto Hua Hin, towards the end of October. This, despite my trepidation at the rate that my hands and arms are giving up. Two and a half months is a very long time with such an aggressive disease. However, the good doctor has made it quite clear that he is only too happy to be with me 24/7 on this trip and do whatever is necessary. Sobeit. I had been led to believe that it was virtually impossible for someone of my age and infirmity to get travel insurance at anything other than a ridiculously high premium. However I am pleased to report that I did find a company today to cover my forthcoming visit to China and Thailand for what I consider a very reasonable premium of £122 which also includes cover for anything arising from my MND or prostate cancer, which I had 10 years ago.
I spent most of the day preparing my talk for the memorial address in Dublin on the 18th September. The trouble is it cannot be entirely light-hearted and has to have some academic interest which means the preparation of a number of PowerPoint slides. Easy enough in the old days but now with weak hands, a laborious process.
17 October 2009
My good friend Dr. Michael Long arrived today from Australia to act as my ‘carer’ and companion for the trip to China and Thailand. We celebrated as usual with our evening bottle of champagne.
3 November 2009
This was our penultimate day and the first which was not wall-to-wall sunshine. There had been a terrific storm last night and there was vegetation debris everywhere. We had been so lucky last evening with the Loy Festival dinner which had been held outside and would have been completely ruined had there been a storm. Speaking of weather we were amazed to learn that the temperature in Beijing was now -8° and snowing, for the first time in living memory, whereas when we were there the temperature was 23° with clear blue skies and, unusually, no pollution. What an amazing change and how lucky we were to have such lovely weather in Beijing.
Here in Hua Hin it was cloudy all day and started to rain continuously, in fact, it was a little chilly, so much so that I even wore a small sleeveless pullover for breakfast. This change of weather mattered not to me as I had had a surfeit of sun over the previous week and we spent our time catching up with e-mails, reading and doing things that we should have done, such as having a formal tea in the newly refurbished restaurant, adjacent to the reception.
Later that evening we went into town as usual and splashed our way through the puddles to the supermarket when Mick bought a new suitcase full all on his new acquisitions including a very thick down filled jacket with a fur trimmed hood (for Sweden) which looked slightly incongruous in the heat of Thailand. Then onto the tailor to pick up my trousers and shirts for my son-in-law. Unfortunately the trousers were not quite right as I have instructed the tailor to make the front opening right down to the underside of the crotch, with a Velcro fastening, instead of a zip, in order for me to gain easy and quick access. The trousers were not as instructed and therefore were returned to the outside tailor who promised to deliver them to the hotel shortly before we left the following day.
We then went to the Onn Onn Corner Restaurant, which, for the record and for the benefit of any of my readers who should find themselves in Hua Hin, is located in Poolsak St – which runs parallel to the main Petchkase Road – near the Hua Hin Buddhist temple. We have decided that the Onn Onn is currently the best restaurant we have eaten in, in Hua Hin, taking over from the Bam Bam, a little further along the same street, which for some inexplicable reason seems to have suddenly gone downhill and for the first time ever, in the 10 years or so that I have been visiting, was almost empty. Clearly the word must have got out amongst the locals.
This evening Mick had scallops in green Thai curry and a large plate of steamed rice. I had a plate of steamed scallops, squid and tiger prawns with mixed peppers in a sort of oysters sauce and we shared a plate of special Onn Onn seafood fried rice and a bottle of Singha beer, the cost 460 baht (£8.60). Then back to the hotel where we watched The Good, the Bad and the Ugly, a quite amusing Western.
4 November 2009
Our last day. Fortunately the sun came out and I was able to have a final morning on the sun bed listening to exquisite music. I packed up and returned to my room around 1 p.m, for my fruit lunch and, with considerable help from Mick, completed my packing before spending a last hour au naterelle spread eagle on my balcony couch.
Our car had been booked for 4 p.m. but turned up 20 minute late. However, we had a good driver who got us to the airport in under three hours. We then had time for a glass or two of champagne (or in Mick’s case whiskey) and a light supper before boarding the aircraft around 9.30. It turned out to be one of the new 380 Airbuses. The seats went flat and were quite comfortable and therefore able to sleep for a good part of the 6 ½. hour flight to Dubai.
We arrived at around 3 a.m. local time and had a couple of hours to spare. I stocked up with Villiger cigars and Johnny Walker Black Label Whiskey.
The Villigers amazingly cost only 42 Dhs, for 25, approx £6.50 – at the current rate of exchange, which is not particularly favourable – yet this compares with a cost in the U.K for the same quantity of £42.50. Somebody somewhere must be making a huge profit as well as the government raking off a substantial amount of tax.
Into what must be the largest business airport lounge in the world, the Emirates business lounge in Dubai, we re-fuelled with more champagne and some delicious eats before boarding a Boeing 777, which again was fitted with very comfortable seats in which, after watching a very disappointing Pink Panther 2 film, I was able to sleep for most of the 7 hour journey to London. As business class passengers we were very fortunate in having a chauffeur driven limousine waiting to deliver us back to Clavering, which he did by 10.30 local time, in time for a welcome cup of coffee with ’my lovely’. All in all it had been a great trip.
Mick and I spent a normal day catching up with e-mails etc., had our usual bottle of champagne in the evening and after falling asleep in front of the television turned in for an early night.
China and Thailand – Carer’s Comments
Now the carer’s point of version of the same trip
CATO Mark The life of his Carer in China and Thailand. October 20- November 5 2009
Hi all,
I have now taken full control of his bottom. I cannot go through another episode like the one at Dubai airport. His bowels are now regular. In China I dreaded the time during lectures he would have to go. The university provides only squat type loos. I had this vision of me swinging around with the crouching professor with first, his trousers going down the huge hole or perhaps me his carer, or possibly all of us!
Aircraft toilets are a breeze. I stand guard at the unlocked door and flip in and out as necessary and finally zip him up as required with me standing in the passage with my charge trying to shout instructions from within. “Careful of my willie” (Evidently it was caught once in a zip by Alice) or “too tight – too loose-or my shirt’s not straight†and so forth.. Always I am getting complaints “I am too hot” but the bugger insists on wearing a vest, shirt, tie and blazer with a (wilting) rose in the button hole and all this when we are struggling along in Economy, Air China with a bunch of indifferently dressed ‘peasants’.
Anyway in Thailand following a bowel action I thrust him in the shower and take to him and his bottom with everything I have. He protests but he now knows I do not tolerate smart English clothes and ‘dirty’ bottoms. Yesterday he escaped and had a bowel action in the toilet near our lagoon. Serves him right for not telling me for because of his useless hands he locked himself in. Fortunately this tropical toilet was open to the jungle on the other side and you can imagine our professor escaping through the jungle with his underpants around his ankles.
He is a sun worshipper, nude, in the afternoons, when in the complete privacy of his balcony. It takes me around 30 minutes to set him up.. First I keep a constant look out to ensure no one is watching this pantomime. Next is the 6 blocker – all over- “rub it well in- now the 50 sun block on my cheeks nose and forehead”.
I shoot this container, it is a bit like a gun. One minute I am dousing a plant or the next not the professor but his hat or glasses. I am getting better. Next, is an oil for his skin which he wants all over and for me then to “rub it well in”. That for his private parts I drop from a height and there is no rubbing business, hoping, with the last movement left in his hands, he can deal with that himself!.
Just now, prior to sunbathing, he wanted to be shaved off some body hair, explaining that “Roman gladiators had this done to them-by plucking while they were taking a Turkish bath”. His eyesight was tremendous as he surveyed my work. “you’ve missed that grey hair by my nipple” and so forth. It took a good 20 minutes and I had a distinct feeling of being a shearer.
The first day here in Thailand, yesterday, I was utterly stuffed as we had arrived at 03.00 a.m. from Beijing. I got the master into bed and unpacked his bag and was not into bed myself until well after 04.00. Up again at 07.00, as I have learnt to do all my things first as there is no time once I begin with him. I got him going by 08.00 but then had to feed him, at breakfast, as well as collecting fruit in a plastic box and orange juice for his lunch. Apparently he has done this for the past 10 years or so, so the staff are quite used to it.
It was 11.00 before I was able to leave him sun baking while I returned to my own devices. At 13.00 a yell across the lagoon, ( I leave my door open so as to keep an eye on him) indicated he was ready to return.
I rush down to fetch his things but again he had quickly escaped to have an outdoor shower. Unfortunately, in the process he splashed a group of nearby indignant German tourists leaving yet another group for me to placate. Last night he insulted a Dutch couple sitting next to us at the ‘Bam Bam’ street restaurant by telling them that their “language is simply disgusting”. Normally we have a drink at 16.00 but I note that the time is getting earlier each day. Whether it is gin, champagne, beer, fruit juice or even coffee I put it in a plastic cup with a top and straw. The straw is long and I have been quick to learn to keep it out of his way as he continually knocks the straw and stuff goes everywhere. I didn’t drink then, as with my fatigue, I would have been unconscious but he was able to put a few gins away without any effect.
After dining in the nearby town of Hua Hin, with him decked out in a large apron, a splint on his right wrist-and another on the left to hold a ‘pusher’- him smoking cigars quite regardless of others nearby – we return to our hotel.
More grog. I have to undress him and then put on his ridiculous night shirt with 20,000 buttons- put toothpaste on his toothbrush, “not the yellow centered toothbrush, that is for the sunshine in the morning” but the “green brush for night†and all this using his revolting electric brush (I plan to clean it soon). I set him up with a drink, and one for myself, and we sit on the bed and watch videos. Last night it was ‘The Young Queen’ about Victoria. Really enjoyed it as there was a lot about Albert who came from Coburg, a city in Germany with which I am familiar, through my friend Andy Schneider.
Great film, but my charge kept talking as each scene reminded his hyperactive and intelligent mind of something. Anyway Victoria had a ‘Mistress of the Robes’ and my master has since promoted me to ‘Master of the Robes’. This includes his laundry “It is too expensive to use the hotel laundry”. So I am into his smalls and everything, plus keep his room relatively tidy. His servant, me, of course, with no time, sends his stuff to the hotel laundry!
What an adventure. There is something compelling and good about this caring. He could barely exist now without help. His disease has progressed and he can barely feed himself. If we are rushing or he is having too much trouble I grab the food and thrust it into his mouth. I must remind him there is no need for him to put his tongue out quite so far as it looks grotesque and is unnecessary, reminding me of a baby magpie. You have to be quick too as he snaps down on his food and a finger could be crushed. Pills I am getting better at throwing them in.
Really though he is an incredible fellow and his lectures to 140 Chinese and international students in Beijing were inspirational. The Chinese students obviously love him and frequently touch him. He has tremendous respect for the young and these people sense it. They were incredibly moved by him coming in spite of his affliction and I could tell that, apart from the wonderful lectures, he has inspired them about living and making use of every second. As his carer it is fun to play some part in all this and even to have made his visit possible. He is now planning to return next year but I do wonder what his situation will be then?. We can consider this at the time. I can understand that Alice at home is enjoying the rest I can provide- a reminder perhaps that carers too require rest.
Bugger, he is calling again – it is 16.00 already. He wants ice and a drink. I must be off.
Hugs and love to you all,
Michael XXXXXXX
30 October 2009 Reply from Penny Long at present in Australia.
Dad – your travels together make for great, hilarious reading….. with loving under- currents…..Have just read it aloud for the second time to the family (Jack, Mary and Leo)..I..think all people, as, a vital life education, need to step into the carer’s-role!!! Imagine, that, instead of military service??? Just read ‘Tuesdays with Morrie’, a moving book but I must say, somewhat proudly, my life has somehow already been tuned to much of the meaning it conveys.
Much love to you and the Roman Gladiator,
Penny & Co!
P.S – Perhaps the Carer should put out a little snippet on his charge’s website….nothing too confronting and only with the Gladiator’s approval of course!!
Sunday 1 November 2009.
Well I have his bowels pretty much under control now though I need to cut back on his mango somewhat as he has me running a bit today. He calls when he is “ready” and, as a contribution, he has clumsily torn off a token mound of paper. He is keen for an initial flush of the toilet in order for me to avoid the gloomy mess in the bowl. However I retain a clinical interest in my work and steal a peak- feeling nearly as satisfied as his Lordship with a good result.
We finish with a clean with ‘baby wipes’ or if too bad he is thrust muttering back into the shower. I now run him as an extension of my own body and increasingly anticipate his requirements. In fact I retain that childish irritation when reminded of something I was about to do.
Yesterday he was out of synch with me. He pissed me off with his arrogance to others, insensitivity, intolerance and impatience. I can handle it, but I really get down when I see him doing it to others. So I had a downer and was abrupt with him and went through my chores in a mechanical fashion. Of course, knowing me as he does, he sensed something was wrong and continually asked had he said something to me that was wrong. I did not tell him, except to mention how in one group he said something about Muslims with others around, which perhaps even Muslims, might consider offensive. Also I have made him aware that not infrequently people close to us at dinner in street cafes move away when he attempts to dominate the situation.
Long swim ( I am back to doing many laps early each morning) and then back into my duties today. All is well and we are laughing and sharing as usual. It was an interesting experience though mainly from my reaction of gloom and where my chores were not the fun they had been or are again today.
The staff here like us and have asked us to join them for the special dinner tonight. We are chuffed by that.
The time slots when I have the master immobilised with sun baking are pure bliss for me. I am reading furiously and lie in the big couch overlooking the lagoon outside my room. In the shade of course, though with direct sun daily 10 minutes a side I am developing a healthy glow. The Asian food is really healthy and I am mad about the steamed rice, fish dishes and vegetarian food.
It is Sunday and we leave Wednesday,4th afternoon for the Bangkok airport, 2 ½. hours away by cheap taxi. Get to London about 07.00 a.m. Thursday 5th and I will go to Essex and “Lantern Thatch” with Mark and ‘hand him over’ to Alice. …..
I gain in strength with daily early swimming and the master I suspect is quietly envious as his body slips away. Up at 06.00 to walk alone on the beach then 30 laps in a tropical pool. I wake him at 07.20 give him green tea with a sealed feeder and straw, while he shaves and I return to wash, shower, dress him and before we depart for breakfast do his hair-his bloody hair. He always insists it is wetted, brushed and combed close and for formal situations I have to apply this terrible teenage type spray to hold it all in place. He constantly asks is it OK. I often confirm it is even though it might be sticking out from the sides giving him this mad professor look-which I think fits the situation anyway.
He can be incredibly impatient and intolerant though he says he is OK now and even Alice has remarked on his improvement. He was though clearly a bit hurt when I indicated he was now a B-, clearly a pass, but room for further improvement! He talked incessantly during that wonderful film “Crash” and at one stage was up and cleaning his teeth with the noisy electrical thing-next he has spilled all the pips from the regular mandarin I skin for him each night; insists I collect them all during the film-and they were everywhere.
Another night he dropped his cigar while smoking in bed. He was yelling blue murder for somehow it was under his back and my attention had been diverted by the usual and big blob of ash adorning the pure white bed cover. Anyway he missed all those wonderful nuances in Crash and then says he didn’t understand the film!
I have to be quick in town as he tires with the heat and I have little time to explore. He is bloody murder in negotiating for 120Baht (about $4.00) for the 10 km or so ride back to the hotel. He usually wins and those emotionally destroyed drivers who do get us back are resuscitated by me surreptitiously slipping them something near the correct fare. Money means much to him and like an automatic calculator he is always blurting out the Sterling equivalent of everything. He worries about the expense of every meal (most for both of us under $15 last night only $10.). He says he is not mean, and I agree, though at times you have to cross some sort of cattle grid to get to his clearly generous side. In all aspects of his life he is and has always been incredibly generous and in all those important aspects of life and not necessarily financial. I, along with others, continue to benefit with this generosity of ‘life’.
He is sun baking again with i-pod music which I set up for him. I then have to order ice for drinks for when he re surfaces at 16.00. Then it is all go until I tuck him into bed following the film at about 22.30,-switch out the lights then like a flash, next door to my room for a read.
Incredible fun and a unique experience-particularly with someone whose mind is so sharp and enquiring. I have an hour of bliss ahead. Must go.
Love from a carer (for there are many of them and the place would not function without).
XXXXX
Michael
Tuesday 3 November 2009
The hotel turned on a lavish feast to celebrate the Loy Krathong Festival. My master tore into the white wine from Chile and possibly overate, leaving him a hot sweaty mess. Not though, before we both were able to celebrate the lives of Jenny, my sister and Lars Aby, from Sweden both of whom had just died and who had been responsible for profound changes in my life. The hotel staff had produced a little float of flowers adorned by incense and a lighted candle which we launched and it floated away into the night.
It was appropriate too, that the candle would flare and die away only to flare again and this went on repeatedly for the next half hour. We were both sad with lumps in our throat and Mark was strangely silent.
His legs are definitely weaker. Following the feast he was impatient and wanted to go ahead to the room. I gave him the card key and had some misgivings of leaving him alone. Minutes later as I approached his room I found him a whimpering mess, crumpled up, impacted in the corner facing the door. He was frightened. I hoisted him up from under his arms. Evidently he had dropped the door card key and was endeavoring to pick it up when he realised he couldn’t move and was impacted, facing the corner.
His arms are useless and his legs weak, creating a near impossible situation for him. This is evident too as he climbs into a ‘took took’ when frequently he folds onto the floor before he can be rescued and plonked on the seat by me, the startled driver or a passer by. He has trouble now covering himself in bed and tends to roll out onto his knees as he leaves bed to do things. Frequently now, I see him in a praying position, with a bare bottom and the ruddy night shirt somewhere around his chin. I have suggested that as he is in the praying position it is a pity to waste it and that he should offer a quick prayer or two as he passes!
Yesterday when I called in to get him up there was blood everywhere. He had fallen out of bed, and struck his head on the corner of the bedside table, while trying to get up during the night for a drink. A shallow laceration on his right cheek will surely cause Alice some concern and possibly a rebuke for me when I return him to her tomorrow.
In spite of these difficulties his life and mine continue with hope and a sense of fun. Undaunted he continues to record his day to day life for his blog (www.dmarkcato.com) and always there is this tremendous enthusiasm to instill in others the fun which remains in a disrupted life. Constantly he is inventing devices not only useful to him but for others who might be disabled.
For ‘The Carer’ (I have elevated myself now to capitals), it has been a profound experience to be with him over the past two weeks. Apart from the occasional periods when I want to ‘kill’ him (and like a ritual he does bury his head in a basin of cold water every morning-making such a task easy-and we laugh about that) I am amazed at how the effective Carer grows into the life of the one being cared for. Just like a surgeon and good surgery you develop a rhythm and move with a minimum of fuss to the task. Anticipation of the needs of others appears the key. In the end you become a team a bit like an effective marriage. Those being cared for are very much part of the team.
He has said repeatedly how Alice and I react similarly to many of his situations, even saying the same things! This morning he paid me the best complement ever as quietly and patiently I was going about my duties. “Thank you my lovely” he said absentmindedly confusing me with Alice. As usual we fell about with riotous laughter.
And so now at the airport in Bangkok our flight is due to depart for London via Dubai. I have kept the mango down and here’s hoping.
Lots of love and hugs to you all,
Michael XX
Penny 6 November 2009
Well Done Michael!! And Well Done Mark Too of course (shall I give him more or less or the same exclamation marks??…….more is only fair after all you leave his sickness today……!!!)!!!!!
It’s been a wonderful story to follow ’cause the compassion keeps coming through too……so what we get a glimpse of, is this ‘curly-leaf’, ornate personality bravely and somewhat(!) loudly claiming/igniting his corner of life determinedly with what ever resources are available to him………and we get a good glimpse of you too which is extra good!
…..
Hugs, Penny & Co
On 06/11/2009, at 3:50 AM, Michael Long wrote:
Mark,
Letter to Mark Cato from Paris 7 November 2009.
That was one of the most incredible few weeks ever. You are an inspiration in every aspect. Not only have you, (and continue to do so), greatly enriched my life you are doing that for countless others, including those wonderful Chinese students. I know this will continue right to the end-whenever that might be.
You were an only child but now you have a ‘brother’-me- for that is how we will continue. It seems appropriate after knowing one another for more than 54 years.
When I arrived to enter the Paris Metro last night my pockets were picked with a cleverly contrived maneuver. The man was “helping” me through the turnstiles and I even thanked him and went on myself to help someone else. Immediately the bank in Australia was onto me trying to confirm a recent purchase attempt and their card and all the others were cancelled. My drivers licence and Hertz and Avis cards have also gone but try as I have there seems no way to cancel them until their offices reopen on Monday! Anyway apart from wearing safer clothing it highlights for me that there can be a vast difference between “helpers” and “Carers”- they are not necessarily the same!
I am pleased about you getting rid of those old computers. No doubt you will plan your room at home and just how you will move about downstairs and the bed well before they might be required. You might need a wheelchair too which has to negotiate various threshold about the house and without. Planning does not mean you will need them and perhaps the reverse will apply. I leave all this to you but fully expect to see you in blazer, tie and wilted rose right to the end. Simply, some things can never be changed.
Anyway thanks for the magic and the sharing.
Love,
Mick XXX
PS Those letters written to my family are attached. Now that I have safely left the country it seems safe to send them!
Letter to Mark after speaking to son Tom, November 10 2009
Mark,
I have just been speaking to Tom. He was really moved by “the letters”. He is a real giver and I find him as a result thinking of doing some quiet charity work in Thailand or I suppose any other country. He just wants to do it quietly without fanfare or reward save that from the intense pleasure you find in caring for others. Anyway it is an example of what you are achieving by yourself and through your friends. Just thought you would like to know.
XXX
Mick
The ‘Cared For’s’ Ripost.
As the reader will have noted, many of the good doctor’s events, on which he commented, were a mirror image of mine, if from the other side of the fence, so to speak. He is entitled to use hyperbole and, indeed, has made ample use of it as, no doubt, as I do myself from time to time. I will neither defend nor comment on the isolated severe criticisms made of my character. If that’s away my friend sees me then sobeit. To his credit he has not allowed such defective characteristics to interfere with our friendship. What I found fascinating about the doctor’s account is that where I saw myself as containing my innate impatience and, most of the time trying unselfishly to consider my carer by delaying requests to what I thought was a more convenient moment, this clearly, is not the way the good doctor saw it.
In a nutshell, I don’t think either of us, particularly show up well from this exchange; me as dominating tyrannical control freak and the good doctor as a passively irritated carer who doesn’t seem to have appreciated how immensely grateful I was for his wonderful care. Densely will it affect our friendship, certainly not – not after 54 years – but has the good doctor a future as my carer, even for brief periods? – time will tell, but I hope so.
3 February 2010
The good doctor Long came yesterday from Paris, arriving mid-afternoon and left mid-morning today -a genuine flying visit. We are mulling over the possibility of the two of us having one final trip to my favourite hotel in Hua Hin, Thailand, towards the end of March. Much depends upon Michael’s workload commitments but I am making enquiries and hoping.
If we do decide to go, I just hope that I will be strong enough to make the trip without being too much of a nuisance. I had a bit of a fright yesterday when I took almost 15 minutes to get out of my study chair at lunch. My minder, Jane, was at the other end of the house so would have rescued me in the end but I did panic a little. However, since then I have  not noticed more  general deterioration in the strength of my legs, so hopefully that was a one-off.
23 February 2010
As regular readers will know, I am off to my favourite hotel, the Anantara, in Hua Hin, Thailand in three weeks time with my good Australian doctor friend Michael Long. When I was last there I promised the Hotel Director that I would try to include a small video, on this blog, to show the world what a beautiful place it was. Thanks to another good friend, Monty, who made the superb DVD of the Athenaeum Dinner, this video has now been made, for tips on film taken by me over the years, and will shortly be included under the Video section, The Beautiful Anantara, Hua Hin, Thailand. Do look at it yourself and you will realise that I was not exaggerating.
Mark Cato
