When I thought first about this wee blog the title that came up in my mind was Lucky Bastard. Sadly this is a bit of a vile calumny on my parents so as usual I delved back into my history and came up with a 1973 movie with a stellar cast led by Malcolm Mcdowell and directed by Lindsay Anderson.
As usual in the peddie blog world the title has precious little to do with the text, so don't worry. This will mostly be about why I feel lucky, and despite promises not to be political, I may be, although not angry.
First my health.
The radiotherapy given at Ninewells a couple of weeks ago seems to have been pretty successful(although the image I seems to have settled of to represent it is WW2 aerial photo of the aftermath of the firebombing of Dresden, neither a pretty sight, nor a fair representation of the expertise of our NHS ). Certainly my head is clearer, despite that last paragraph.
I have lost a bit of fitness, more about the steroids I am on rather than the illness, I think although I am thinking seriously about trying the mile and a half to bus in Kingsbarns again. Maybe.
So lets talk a bit about luck.
Some things are obvious. 19 months ago I was diagnosed with a stage 4 lung cancer metastasising into both brain and shoulder bone. There was a single effective treatment available, but only a 50 50 chance this would be effective against my tumour. The coin came up positive and for 14 months my tumours shrank, I walked 100000 steps a week and life was good and laughter was never far away.
Then there is the nature of my illness, and particularly the fact that it is entirely asymptomatic. At no time have I had any pain and even the Afatinib side effects never amounted to more than fart roulette.
I spoke yesterday to an ex customer who has a close family member with possibly a similar life expectancy, but whose tumours are in the bones and who has pretty much constant pain. I suspect this would have challenged my courage and humour.
So it has been a little more than 2 weeks since I wrote anything here. It is slightly disappointingly because it was quite a clever, and ever so slightly political bit that explained that the real reason I am lucky is that my family has just enough financial resources to cope. Clare can take the day off to drive me to Ninewells for whichever is the next appointment, not only that but Clare's employers have been extraordinarily understanding and generous about letting the good Dr Peddie work flexibly over the past weeks or months.
Since I last wrote here I have reevaluated what makes me lucky.
It is the cocoon of love that I have been woven into. Not just my family, who have to help me, help Clare and look forward to a future without me, something I don't need to worry too much about.
I remember thinking way back in 2015 when I was diagnosed that what makes my friends and relatives special has been the number who have stepped towards me and offered me support and a good manly or womanly hug. Some have found it more difficult than others and I could see or feel a deep breath being taken. Many of you have gone an extra mile, and may never know how grateful I am.
I realise it can't be easy being nice to someone who routinely dissolves in tears whenever someone is nice to me.
And where is my health, I hear you not quite daring to ask.
Still fuckt, I am afraid, there is going to be no miracle cure. I am now being looked after by Fife Palliative care. Their remit is to make my last few weeks as comfortable as possible. Thus far things are going as well as can be expected. The lungs are a bit of a problem. I get breathless quickly. Interestingly the treatment of choice for this is low doses of morphine. This is less fun than I might have hoped and comes with its own side effect. CONSTIPATION.
Now I have been regular as clockwork for 50 years, but for the last few days I have been planning and balancing opiods against laxatives with as much care, although perhaps not as much skill as Warren Gatland plotting a test series win against the All Blacks.
And, yes, I realise I may be watching just a little bit too much rugby.
That last line of course was displacememt description, which has saved you all from learning how successful my balancing act has been.
Tuesday 20 June 2017
Thursday 25 May 2017
Jackdaw 2
In 1991 Clare and I, with Nikki and James moved into our new house at Kilduncan. As we were running an egg business our address has mostly been Kilduncan Poultry Farm, but we chose to call our house Albacore House, this may sound a bit nouveau toff but the name was quite carefully chosen to reflect two aspects of our little holding's future and past.
Albacore is first of all a species of tuna. When we chose the name Clare was early in her career as a diver so calling our residence after a species of tuna seemed sensible.
But there was a second more historical factor in choosing the name Albacore.
Fifty years before we moved to Albacore House, as world war two gathered pace a naval air station was built on the farms of Kilduncan, Upper Kenly, and North Quarter of Kippo, I think it was originally an emergency landing strip for the much larger Naval Air Station just east of Crail, called HMS Jackdaw.
Keeping things simple 'our' little airfield was named Jackdaw 2 and when we did a bit of research into which planes might have used Jackdaw 2. There, among names like Fairey Swordfish, Supermarine Walrus and Fairey Barracuda, as well as the better known Westland Lysander and the slightly less expected North American Mustang we found the Fairey Albacore, and in a moment a house was named.
It isn't really my purpose here to describe the physical environment of Jackdaw 2 but my verbosity demands I do a quick description.
The actual airstrip was on the highest part of the site. It was a grass strip but there was a 3 mile concrete road running right round it. The control tower still exists up on Upper Kenly, and I believe it has, or at least had and interesting aerial.
When I was a toddler dad bought Kilduncan Farm from a battle of Britain Spitfire pilot who had tried, and failed to build his post-war future on pig farming on Kilduncan.
We sold the farm again in 1968 but dad had just started to use some of the redundant military buildings to keep hens in to produce eggs to sell locally, mostly alongside the bottles of milk we retailed from Coal Farm for many years, so he kept the 6 acres we now live on
A couple of family stories do linger. There is a field about 30 metres to my right which isn't much more than 10 acres, but dad claimed that he had cleared 23 WW2 Nissen huts from this field, to make what wasn't, and still isn't a fully arable field, but which has grown a lot of good grass in the past 50 years. No details of how he did it, or where the building materials ended up remain.
My respect for this achievement is enormous. In 1990 when we were building our house we had to remove one similar base and had the option to clear a couple more. The best the man with the big digger could offer was to drag the intact base 30m and bury it. The other 2 are still there, and likely to stay for a while.
The other, better, but possibly more likely to be apocryphal story comes from Grampa Peddie, who with gran lived in the original Kilduncan Farmhouse for the 11 years dad and he owned the whole 180 acres.
His story was that several packing cases containing Spitfire engines, presumably Rolls Royce Merlin were buried somewhere on site. No evidence has ever been produced to support this tale so I include it only as a piece of family folklore.
And eventually I come to the reason for this post.
In the years after we moved here we had a surprising number of visitors who had wartime connections with Jackdaw 2.
At first they were almost exclusively elderly couples or ladies who had met their husbands or wives while serving at Jackdaw 2. If I had been more aware I would have brought each of them into the house and got their stories down on paper. Sadly I was almost often busy so all I have left are inadequate fragments of 30 year old conversations.
My memory is that there were more ladies and couples than men. While they were obviously a self selecting sample they came seeking happy memories. Mostly these were of young lives and partnerships begun, but I do remember a couple of fragments of life on the camp.
One was of a Chief Petty Officer who was always happy to offer any of the WRENs stationed here a lift on his bike handlebars down to Kingsbarns, home of both the Cambo Arms, still surviving as our local pub, although now called the Inn @ Kingsbarns, and perhaps more importantly the bus to St Andrews.
There was also a story that in early 1944 there was a mysterious collection of tents discretely pitched on one of the quieter corners of the airfield and lived in by Royal Marines. The suggestion I picked up was that these men were involved either on D-Day or perhaps just before. Certainly European travel was involved.
There were two other later visitors who I remember rather better.
One day in the early 2000s I came home in a van and passed a camper van with a German number plate parked at the Wrennery, as we call the collection of buildings, now on North Quarter, and half way in our road. I drove past but fortunately the camper van shortly followed me in and we chatted.
The driver was a German in his 70s. In 1945, as a 16 or17 year old, he was conscripted into the German army and given the task of stopping the allied armies from crossing the Rhine. He was one of the lucky ones who were taken prisoner and he was removed from what must have been a hellish existence in Germany to what he clearly thought was a charmed live in Fife.
And what little I heard makes it hard to disagree.
The wrennery had found a new identity as a POW camp. But this was a camp without armed guards and where the prisoners were told to go out to local farms where they could work for food and keep. I assume Boghall would be high on the list of possibilities, but I have never asked the Turnbull family, owners then as now.
Certainly my German acquaintance looked back on a life saved and was grateful for a place of safety which allowed him to go back to a decent life in post war Germany.
The last visitor was perhaps the most interesting, and he came with a photograph.
The photo showed him standing on the steps, which still exist, and which are less than 30m from our back door, and lead up to a now decrepit building, but which must have been the last building on the farm to be occupied on WW2 business.
This man was not a serviceman but an employee of the naval dockyard at Rosyth.
We have to imagine a situation that on VE day British shipyards were building and equipping Naval and other ships as quickly as was humanly possible.
When Germany surrendered suddenly these ships were surplus to requirements. I have no idea what happened to the ships, but by 1948 my last visitor and his colleagues were busy putting some of the equipment into storage in the maintenance hangers which still exist on Kilduncan.
Albacore is first of all a species of tuna. When we chose the name Clare was early in her career as a diver so calling our residence after a species of tuna seemed sensible.
But there was a second more historical factor in choosing the name Albacore.
Fifty years before we moved to Albacore House, as world war two gathered pace a naval air station was built on the farms of Kilduncan, Upper Kenly, and North Quarter of Kippo, I think it was originally an emergency landing strip for the much larger Naval Air Station just east of Crail, called HMS Jackdaw.
Keeping things simple 'our' little airfield was named Jackdaw 2 and when we did a bit of research into which planes might have used Jackdaw 2. There, among names like Fairey Swordfish, Supermarine Walrus and Fairey Barracuda, as well as the better known Westland Lysander and the slightly less expected North American Mustang we found the Fairey Albacore, and in a moment a house was named.
It isn't really my purpose here to describe the physical environment of Jackdaw 2 but my verbosity demands I do a quick description.
The actual airstrip was on the highest part of the site. It was a grass strip but there was a 3 mile concrete road running right round it. The control tower still exists up on Upper Kenly, and I believe it has, or at least had and interesting aerial.
When I was a toddler dad bought Kilduncan Farm from a battle of Britain Spitfire pilot who had tried, and failed to build his post-war future on pig farming on Kilduncan.
We sold the farm again in 1968 but dad had just started to use some of the redundant military buildings to keep hens in to produce eggs to sell locally, mostly alongside the bottles of milk we retailed from Coal Farm for many years, so he kept the 6 acres we now live on
A couple of family stories do linger. There is a field about 30 metres to my right which isn't much more than 10 acres, but dad claimed that he had cleared 23 WW2 Nissen huts from this field, to make what wasn't, and still isn't a fully arable field, but which has grown a lot of good grass in the past 50 years. No details of how he did it, or where the building materials ended up remain.
My respect for this achievement is enormous. In 1990 when we were building our house we had to remove one similar base and had the option to clear a couple more. The best the man with the big digger could offer was to drag the intact base 30m and bury it. The other 2 are still there, and likely to stay for a while.
The other, better, but possibly more likely to be apocryphal story comes from Grampa Peddie, who with gran lived in the original Kilduncan Farmhouse for the 11 years dad and he owned the whole 180 acres.
His story was that several packing cases containing Spitfire engines, presumably Rolls Royce Merlin were buried somewhere on site. No evidence has ever been produced to support this tale so I include it only as a piece of family folklore.
And eventually I come to the reason for this post.
In the years after we moved here we had a surprising number of visitors who had wartime connections with Jackdaw 2.
At first they were almost exclusively elderly couples or ladies who had met their husbands or wives while serving at Jackdaw 2. If I had been more aware I would have brought each of them into the house and got their stories down on paper. Sadly I was almost often busy so all I have left are inadequate fragments of 30 year old conversations.
My memory is that there were more ladies and couples than men. While they were obviously a self selecting sample they came seeking happy memories. Mostly these were of young lives and partnerships begun, but I do remember a couple of fragments of life on the camp.
One was of a Chief Petty Officer who was always happy to offer any of the WRENs stationed here a lift on his bike handlebars down to Kingsbarns, home of both the Cambo Arms, still surviving as our local pub, although now called the Inn @ Kingsbarns, and perhaps more importantly the bus to St Andrews.
There was also a story that in early 1944 there was a mysterious collection of tents discretely pitched on one of the quieter corners of the airfield and lived in by Royal Marines. The suggestion I picked up was that these men were involved either on D-Day or perhaps just before. Certainly European travel was involved.
There were two other later visitors who I remember rather better.
One day in the early 2000s I came home in a van and passed a camper van with a German number plate parked at the Wrennery, as we call the collection of buildings, now on North Quarter, and half way in our road. I drove past but fortunately the camper van shortly followed me in and we chatted.
The driver was a German in his 70s. In 1945, as a 16 or17 year old, he was conscripted into the German army and given the task of stopping the allied armies from crossing the Rhine. He was one of the lucky ones who were taken prisoner and he was removed from what must have been a hellish existence in Germany to what he clearly thought was a charmed live in Fife.
And what little I heard makes it hard to disagree.
The wrennery had found a new identity as a POW camp. But this was a camp without armed guards and where the prisoners were told to go out to local farms where they could work for food and keep. I assume Boghall would be high on the list of possibilities, but I have never asked the Turnbull family, owners then as now.
Certainly my German acquaintance looked back on a life saved and was grateful for a place of safety which allowed him to go back to a decent life in post war Germany.
The last visitor was perhaps the most interesting, and he came with a photograph.
The photo showed him standing on the steps, which still exist, and which are less than 30m from our back door, and lead up to a now decrepit building, but which must have been the last building on the farm to be occupied on WW2 business.
This man was not a serviceman but an employee of the naval dockyard at Rosyth.
We have to imagine a situation that on VE day British shipyards were building and equipping Naval and other ships as quickly as was humanly possible.
When Germany surrendered suddenly these ships were surplus to requirements. I have no idea what happened to the ships, but by 1948 my last visitor and his colleagues were busy putting some of the equipment into storage in the maintenance hangers which still exist on Kilduncan.
Sunday 14 May 2017
5 days of treatment
Possibly the easiest thing I have ever done.
My role in the procedure was to lie on my back for about 5 minutes, wearing a neon yellow face mask, while a linear accelerator did something clever with xrays aimed at the more tumour rich parts of my brain. Those of you who know me will acknowledge that this is well within my skillset.
Easy though lying there was the treatment was not quite side effect free. I suspect x-rays are not terribly good for brain cells, so now it is Sunday and I am feeling quite a lot better than I have for a couple of days.
Of course on Thursday I felt great. Got up early (well, before 8, dad would have called it a long lie) and buzzing. Had treatment then came home to pass on my knowledge of cutting the grass and operating our slightly dilapidated John Deere lawnmower to Dr Peddie. She of course was an ideal pupil, a hot hatch prodean perhaps.
The grass in the paddock was a little long and there was a minor choking incident, this did involve my spending quite and extended period lying under the mower as I pulled handfuls of compressed grass from under the cutters.
This may help to explain why I felt shit on Friday morning. However a wee rest and some outstanding Scottish 7s rugby on TV has brought me round. After 18 months of astonishingly robust health, I have to accept that there will be more bad days, the trick, I suspect, is to grab the good days with both hands, even at risk of tiring myself out.
So, who believes in karma?
Probably not me to be honest, although I have a wee Rebus story which might wobble my rationalism.
I dad's last couple of weeks fighting his prostate he was struggling to read even a paperback book. I had just been given an ebook, primitive in the early 2000s, but we tried.
It didn't work too well, but eventually it dawned on me that the Ian Rankin novel I had chosen for Dad to read, probably as his last book was Exit Music. Hardly apt.
So cut to this week and the latest book to step up on my trusty kindle is another Rebus Rankin novel.
This one is called Rather be the Devil.
It features a retired John Rebus, who interestingly has a large shadow on his lung. Lung cancer? He certainly has spent quite a bit of time coughing his guts up.
I am only 62% of my way through the book so i won't be able to plot spoil completely.
Good book though, you should read it.
Karma? Nah.
My role in the procedure was to lie on my back for about 5 minutes, wearing a neon yellow face mask, while a linear accelerator did something clever with xrays aimed at the more tumour rich parts of my brain. Those of you who know me will acknowledge that this is well within my skillset.
Easy though lying there was the treatment was not quite side effect free. I suspect x-rays are not terribly good for brain cells, so now it is Sunday and I am feeling quite a lot better than I have for a couple of days.
Of course on Thursday I felt great. Got up early (well, before 8, dad would have called it a long lie) and buzzing. Had treatment then came home to pass on my knowledge of cutting the grass and operating our slightly dilapidated John Deere lawnmower to Dr Peddie. She of course was an ideal pupil, a hot hatch prodean perhaps.
The grass in the paddock was a little long and there was a minor choking incident, this did involve my spending quite and extended period lying under the mower as I pulled handfuls of compressed grass from under the cutters.
This may help to explain why I felt shit on Friday morning. However a wee rest and some outstanding Scottish 7s rugby on TV has brought me round. After 18 months of astonishingly robust health, I have to accept that there will be more bad days, the trick, I suspect, is to grab the good days with both hands, even at risk of tiring myself out.
So, who believes in karma?
Probably not me to be honest, although I have a wee Rebus story which might wobble my rationalism.
I dad's last couple of weeks fighting his prostate he was struggling to read even a paperback book. I had just been given an ebook, primitive in the early 2000s, but we tried.
It didn't work too well, but eventually it dawned on me that the Ian Rankin novel I had chosen for Dad to read, probably as his last book was Exit Music. Hardly apt.
So cut to this week and the latest book to step up on my trusty kindle is another Rebus Rankin novel.
This one is called Rather be the Devil.
It features a retired John Rebus, who interestingly has a large shadow on his lung. Lung cancer? He certainly has spent quite a bit of time coughing his guts up.
I am only 62% of my way through the book so i won't be able to plot spoil completely.
Good book though, you should read it.
Karma? Nah.
Wednesday 3 May 2017
A man with a plan
Well, strictly speaking the plan comes from our NHS.
Yesterday Clare and I made another, and entirely trauma free visit to Ninewells. This time we were preparing for a plan which starts next week.
I was first fitted with a warm moulded face mask. It was lime green with perforations. Its function is to keep my head still next week.
Not, you understand, for the whole of next week but for the 10 to 15 minutes each day next week when Ninewells finest radiographers will be using their CT scanning machine to send X-rays into the Peddie brain area.
With a fair wind this will stop or even shrink tumour growth up there.
Final effects are not certain so I won't tempt fate by listing the possibilities.
I will almost certainly lose my hair, and be much more tired than I have been.
But neither hair loss nor tiredness seem like to much of a price to pay.
There is another matter.
One of Elton John's better songs is Sorry Seems to be the Hardest Word. Good song, but sadly at present in my situation not quite accurate.
Turns out goodbye is the hardest word.
Now I have a long and proud history of weeping uncontrollably when saying goodbye.
The first time I remember performing this trick was nearly 50 years ago when dad and I took a 90 year old Ontario retired farmer to Prestwick airport at the end of his stay of two or three weeks.
When it came to saying goodbye I welled up pretty much uncontrollably.
Not just goodbye of course. Although I call Sunshine on Leith my happy place this doesn't mean that I don't regularly watch it with tears running down my face. Also, as I type this, slowly, The West Wing is unfolding in front of me. Odds are I will shed a tear or two before it is finished.
It is niceness and decency that hits me here, I think.
Now in my present situation most people I meet are decent and nice and are keen to say goodbye. I love you all but I warn you tears may result. Preserving the illusion that I will be here for years may be the best way ahead. Hugging is always acceptable.
There is another small issue.
This is shit. I think so. I am pretty sure we pretty much all concur. For simplicity I will end with a facebook message from a surprisingly eloquent butcher. A friend, a decent man and a pretty damn good butcher.
'Awww egg man. That's just a complete bastard,
The somewhat less than eloquent fat butcher'
More all less says it all. Nuffsaid.
Yesterday Clare and I made another, and entirely trauma free visit to Ninewells. This time we were preparing for a plan which starts next week.
I was first fitted with a warm moulded face mask. It was lime green with perforations. Its function is to keep my head still next week.
Not, you understand, for the whole of next week but for the 10 to 15 minutes each day next week when Ninewells finest radiographers will be using their CT scanning machine to send X-rays into the Peddie brain area.
With a fair wind this will stop or even shrink tumour growth up there.
Final effects are not certain so I won't tempt fate by listing the possibilities.
I will almost certainly lose my hair, and be much more tired than I have been.
There is another matter.
One of Elton John's better songs is Sorry Seems to be the Hardest Word. Good song, but sadly at present in my situation not quite accurate.
Turns out goodbye is the hardest word.
Now I have a long and proud history of weeping uncontrollably when saying goodbye.
The first time I remember performing this trick was nearly 50 years ago when dad and I took a 90 year old Ontario retired farmer to Prestwick airport at the end of his stay of two or three weeks.
When it came to saying goodbye I welled up pretty much uncontrollably.
Not just goodbye of course. Although I call Sunshine on Leith my happy place this doesn't mean that I don't regularly watch it with tears running down my face. Also, as I type this, slowly, The West Wing is unfolding in front of me. Odds are I will shed a tear or two before it is finished.
It is niceness and decency that hits me here, I think.
Now in my present situation most people I meet are decent and nice and are keen to say goodbye. I love you all but I warn you tears may result. Preserving the illusion that I will be here for years may be the best way ahead. Hugging is always acceptable.
There is another small issue.
This is shit. I think so. I am pretty sure we pretty much all concur. For simplicity I will end with a facebook message from a surprisingly eloquent butcher. A friend, a decent man and a pretty damn good butcher.
'Awww egg man. That's just a complete bastard,
The somewhat less than eloquent fat butcher'
More all less says it all. Nuffsaid.
Thursday 27 April 2017
Stiff upper lip time
Two posts in two days. Something is up, I hear you say.
Sadly you are right, and this one may not be any easier to read than it will be to write. My customary jocular tone may even dip a little. But it has to be done.
This morning Clare and I made another trip to Ninewells to get the results of my last scan from Dr Adamson.
They are not good. In technical language I am fuckt.
The tumours have grown and multiplied both in my lungs and in my brain.
We discussed 3 possible ways ahead.
First was do nothing.
Second is a course of traditional chemotherapy. This might have some beneficial effects on my lung tumours, but the brain is very efficient at keeping out molecules of this size and this would have little effect on the brain tumours. Essentially I am less scared of dying than I am of being altered by whatever is happening or might be about to happen in my brain.
So we are opting for number three.
This is a course of full brain radiotherapy. This seems to offer me the best chance of extending the marvellous window of health I have enjoyed, and be in no doubt I have enjoyed every minute of the last, bonus 18 months.
The side effects seem a reasonable risk, tiredness is almost certain and this might threaten my walking. Nausea is possible, but drugs will help. I may lose my hair. I feel guilty every time I laugh about this possibility, it is nothing to me but it is very important to many people.
So here we are. I don't know how long I have, not years certainly and little idea how many months, but I am still remarkably fit. I will continue to laugh inappropriately, to hate the tory party, to welcome friends, to drink beer (other beverages will be consumed). I will accept invitations and will do my best to make it on the day
The word brave reared its head again this morning but I can assure yout that bravery is not my secret, love is.
Since my diagnosis I have been cocooned in love. By friends who have stepped closer when they could have walked on by.
By two extraordinarily loving families, the Peddies and the Endeans.
And above all by Nikki, Elton, James, Ben and the extraordinary Clare. They have enough courage to share with me to make me look good.
Sadly you are right, and this one may not be any easier to read than it will be to write. My customary jocular tone may even dip a little. But it has to be done.
This morning Clare and I made another trip to Ninewells to get the results of my last scan from Dr Adamson.
They are not good. In technical language I am fuckt.
The tumours have grown and multiplied both in my lungs and in my brain.
We discussed 3 possible ways ahead.
First was do nothing.
Second is a course of traditional chemotherapy. This might have some beneficial effects on my lung tumours, but the brain is very efficient at keeping out molecules of this size and this would have little effect on the brain tumours. Essentially I am less scared of dying than I am of being altered by whatever is happening or might be about to happen in my brain.
So we are opting for number three.
This is a course of full brain radiotherapy. This seems to offer me the best chance of extending the marvellous window of health I have enjoyed, and be in no doubt I have enjoyed every minute of the last, bonus 18 months.
The side effects seem a reasonable risk, tiredness is almost certain and this might threaten my walking. Nausea is possible, but drugs will help. I may lose my hair. I feel guilty every time I laugh about this possibility, it is nothing to me but it is very important to many people.
So here we are. I don't know how long I have, not years certainly and little idea how many months, but I am still remarkably fit. I will continue to laugh inappropriately, to hate the tory party, to welcome friends, to drink beer (other beverages will be consumed). I will accept invitations and will do my best to make it on the day
The word brave reared its head again this morning but I can assure yout that bravery is not my secret, love is.
Since my diagnosis I have been cocooned in love. By friends who have stepped closer when they could have walked on by.
By two extraordinarily loving families, the Peddies and the Endeans.
And above all by Nikki, Elton, James, Ben and the extraordinary Clare. They have enough courage to share with me to make me look good.
Wednesday 26 April 2017
Circles you find in the windmills of your mind
Then suddenly a very intense and very good day relieves the uncertainty.
Telling it properly will take a bit of rambling into history.
I have written before about our family tragedy which took the life of my big sister in a horrible way.
In the last few months this very old story has added a second chapter. And to bring you up to date I have to introduce Joe and Maggie, and just a little coincidence.
Ratho Mains, where the fire that killed Alison took place, was sold shortly afterwards, it was bought by a dairy farmer (and so much more) called Peter Barry. His family included a son called Joe.
When I arrived at Edinburgh University in 1973 to study agriculture (any review of my academic career would reveal that I use the term study rather loosely) one of my class mates was this very same Joe Barry. We have now been friends for well over 40 years, all the more so as he married Maggie who was a 3rd year flatmate of mine.
Over the years Joe has become more interested in Alison's story and I have had occasional envelopes arrive at Kilduncan with press cuttings about the fire.
So now we are in 2015 and the shed where Alison died still exists, in fact it is built of whinstone, a mineral so hard that it may stand for
many hundreds of years.
Joe's business has changed; the cows have gone, a large new shed supplies the 21st century needs of the farm and the old stone buildings have found new uses.
One of these sheds has been taken by a charity called Kids Love Clothes. By just another tweak of coincidence it is the shed where Alison died.
Kids Love Clothes collect donated clothes in the Edinburgh area and wash, iron and sort them into age and gender packages. So if a social worker calls and mentions a 6 year old girl who has no decent clothing they will make up a package with clothing, underwear, shoes, maybe even a wee toy or two to fit this little girl and to help make her life a little more decent
Now you and I may rage that in one of the richest countries in the world a British government has engineered a situation where clothing banks and food banks are necessary to give so many people the bare necessities.
At the same time we have to be so grateful that there are heroic groups like Kids Love Clothes who work so hard to cover the gap (with no government or council funding).
Now it turns out that Joe has told Alison's story to the charity and they have found enough inspiration to name the room where they will be sorting clothes Alison's Room.
On Saturday they had an open day. Mostly this allowed potential helpers, suppliers and beneficiaries to see exactly what they do. They also invited the Peddie family through to unveil a lovely plaque in Alison's memory.
Joe and I made speeches, although there were tears. Joe lost it first, but I was always going to go as I tried to say how much this gesture means to me and my brothers, and how much more it would have meant to mum and dad to see their sadness associated with so much hope for the future.
Maggie made us lunch and old friends arrived unexpectedly to join us in eating it. Already a really good day. And it got better.
Ben and I had a birthday party nearly a year ago, and one present we have been treasuring in anticipation was the dining voucher for the Cellar.
Now the Peddie family and the Cellar have as much history as we have with the Barry family.
My first visit was in 1985 when dad took the whole family to try to put the taste of a disastrous harvest out of our minds. On that evening Clare was our waitress and although we didn't meet that night we did a little more than a year later and have been together ever since. And until she went back to University of St Andrews and set herself on an academic career, she carried on working there.
As you can imagine this wonderful restaurant as well as being owned and run by dear friends has been the focus of Peddie celebrations for 30 years.
There has been tragedy here too and the restaurant faced a very uncertain future after Peter's untimely death. But cometh the hour cometh the man.
In this case the man is Billy Boyter. And once again, as a man I am ignoring the contribution of Patricia who saw the possibilities in the Cellar and came back from Edinburgh to look after front of house. The style of cooking is utterly different but the quest for perfection is unchanged and gained Cellar a michelin star in his first year of operation.
So to say our mouths were watering in anticipation when Ben and Carly and Clare and I arrived in a taxi at 6.25 on Saturday evening would be an understatement. Now don't worry. I am not going to describe the meal in detail. The level of drooling this would induce in me might well damage my tablet.
Suffice it to say we had the full tasting menu with wine pairings (perhaps the best matched wines I have ever drunk on a tasting menu).
We may have spent slightly more than the voucher amount (or blown it out of the water) but we laughed and chatted and had as good an evening in a restaurant as I can remember. Thank you so much Billy and Patricia
And so to health matters. Tomorrow, Thursday we are back to Ninewells for the results of the last scan. Pictures will show tumour progress and Dr Adamson will discuss chemo and perhaps radiotherapy.
Telling it properly will take a bit of rambling into history.
I have written before about our family tragedy which took the life of my big sister in a horrible way.
In the last few months this very old story has added a second chapter. And to bring you up to date I have to introduce Joe and Maggie, and just a little coincidence.
Ratho Mains, where the fire that killed Alison took place, was sold shortly afterwards, it was bought by a dairy farmer (and so much more) called Peter Barry. His family included a son called Joe.
When I arrived at Edinburgh University in 1973 to study agriculture (any review of my academic career would reveal that I use the term study rather loosely) one of my class mates was this very same Joe Barry. We have now been friends for well over 40 years, all the more so as he married Maggie who was a 3rd year flatmate of mine.
Over the years Joe has become more interested in Alison's story and I have had occasional envelopes arrive at Kilduncan with press cuttings about the fire.
So now we are in 2015 and the shed where Alison died still exists, in fact it is built of whinstone, a mineral so hard that it may stand for
Joe's business has changed; the cows have gone, a large new shed supplies the 21st century needs of the farm and the old stone buildings have found new uses.
One of these sheds has been taken by a charity called Kids Love Clothes. By just another tweak of coincidence it is the shed where Alison died.
Kids Love Clothes collect donated clothes in the Edinburgh area and wash, iron and sort them into age and gender packages. So if a social worker calls and mentions a 6 year old girl who has no decent clothing they will make up a package with clothing, underwear, shoes, maybe even a wee toy or two to fit this little girl and to help make her life a little more decent
Now you and I may rage that in one of the richest countries in the world a British government has engineered a situation where clothing banks and food banks are necessary to give so many people the bare necessities.
At the same time we have to be so grateful that there are heroic groups like Kids Love Clothes who work so hard to cover the gap (with no government or council funding).
Now it turns out that Joe has told Alison's story to the charity and they have found enough inspiration to name the room where they will be sorting clothes Alison's Room.
On Saturday they had an open day. Mostly this allowed potential helpers, suppliers and beneficiaries to see exactly what they do. They also invited the Peddie family through to unveil a lovely plaque in Alison's memory.
Joe and I made speeches, although there were tears. Joe lost it first, but I was always going to go as I tried to say how much this gesture means to me and my brothers, and how much more it would have meant to mum and dad to see their sadness associated with so much hope for the future.
Maggie made us lunch and old friends arrived unexpectedly to join us in eating it. Already a really good day. And it got better.
Ben and I had a birthday party nearly a year ago, and one present we have been treasuring in anticipation was the dining voucher for the Cellar.
Now the Peddie family and the Cellar have as much history as we have with the Barry family.
My first visit was in 1985 when dad took the whole family to try to put the taste of a disastrous harvest out of our minds. On that evening Clare was our waitress and although we didn't meet that night we did a little more than a year later and have been together ever since. And until she went back to University of St Andrews and set herself on an academic career, she carried on working there.
As you can imagine this wonderful restaurant as well as being owned and run by dear friends has been the focus of Peddie celebrations for 30 years.
There has been tragedy here too and the restaurant faced a very uncertain future after Peter's untimely death. But cometh the hour cometh the man.
In this case the man is Billy Boyter. And once again, as a man I am ignoring the contribution of Patricia who saw the possibilities in the Cellar and came back from Edinburgh to look after front of house. The style of cooking is utterly different but the quest for perfection is unchanged and gained Cellar a michelin star in his first year of operation.
So to say our mouths were watering in anticipation when Ben and Carly and Clare and I arrived in a taxi at 6.25 on Saturday evening would be an understatement. Now don't worry. I am not going to describe the meal in detail. The level of drooling this would induce in me might well damage my tablet.
Suffice it to say we had the full tasting menu with wine pairings (perhaps the best matched wines I have ever drunk on a tasting menu).
We may have spent slightly more than the voucher amount (or blown it out of the water) but we laughed and chatted and had as good an evening in a restaurant as I can remember. Thank you so much Billy and Patricia
And so to health matters. Tomorrow, Thursday we are back to Ninewells for the results of the last scan. Pictures will show tumour progress and Dr Adamson will discuss chemo and perhaps radiotherapy.
Wednesday 12 April 2017
On homonyms, and a cliffhanger
Fit is one of these words in the English language where the same short word can have a variety of meanings.
During my 60 odd years the word has seldom been applied to my physique (seldom isn't exactly the right word there either, but never seemed so negative.) I am actually probably as fit now as I have ever been, both thanks to a brief spell of jogging, where I proved to myself that I can actually run 5000m all in a oner without too much resembling a tortoise. And of course the DVLA's decision to remove my driving licence helps a lot.
It is a mile and a half to our nearest bus stop (and back) and since November 2015 I have done the round trip pretty much every day.
For those who share my growing obsession with Fitbit stats I have averaged between 90 and 100,000 steps per week and just under 10km per day during those nearly 18 months.
Also for the record the upper body is perhaps not so taut.
But that is not the meaning that has been most on my mind in the last couple of weeks.
Neither has the more modern sense of fit as meaning sexually attractive. Even during those heady days as 1986 slipped into 1987 and Clare and I got to know each other I don't recall that particular use of the word being used. Perhaps that sense of the word hadn't come into use. Or perhaps my attractions then, as now were more cerebral.
No, the sense of the word I have been most preoccupied with raised its ugly little head around 6.30pm a week past Monday.
I had been sitting at the kitchen table finishing some business paperwork. I got up to get myself a glass of water and on the way to the tap stopped to help myself to a wee handful of tortilla chips, as you do.
I was slightly surprised when they proved a little difficult to swallow and even more surprised when I realised that not only was my tongue rigid and shaking, but my jaws were banging together hard and uncontrollably. This was probably the moment when the next sense of the word 'fit' came into my head. It seemed that I might be having one, and that it was probably a good idea to seek help.
Fortunately my trusty mobile was there and I only had to decide whether 999 or 111 was the more appropriate number to call. But, sorry there was a but and it was my lack of fine motor skills in my arms and hands. It proved surprisingly tricky to get rid of the message screen and to dial the 3 digits (by this time 999 had been chosen).
Fortunately I came up with plan B. Our much abused and little used landline had a handset attached with bigger buttons. I made my way into the hall, legs still sound luckily, and was able to knock three times on the phone in front of me.
Of course I had reckoned without my shoogly arms. While trying to talk into the phone I contrived to pull the receiver lead out of the phone, leaving the emergency operator with a silent call.
I was also in a bit of a predicament. Those of you who know Kilduncan will know that there is a nice comfortable armchair by the hall phone. Had I carefully sat in that, the next 10 minutes would have been easier.
But no, there was another chair. A childs chair, bought for Isaac and Daisy and pretty much the right size for either of them. As luck would have it this was the one encountered by my arse as it performed its gravitational duty, and as luck would have it my acceleration due to gravity was enough to get me firmly wedged in this wee seat.
Now clouds are known for their silver linings and in this case my glint of precious metal was finding my recently dropped mobile and finding that my shoogling was easing and that I was able to make a second attempt at 999. This one was successful and I was eventually able to ask for an ambulance which came promptly.
By the time it got here of course the excitement was pretty much over. I had even managed to extract myself from the kiddy seat.
I can hear you ask 'what about the first 999 call'?
This too was answered, by the police. They responded to a holiday house next door. Not their fault, I think, dad back in the days when I decided to build a house here set on tge name West Kilduncan for what I have alwayd called the Poultry Farm. That is now also the name of the holiday cottage.
They came upon a dark house and hauled a key holder out to open the door to look for a body, and were also prepared to break the door down.
Sincere thanks to both Fife Police and Messrs Logan for their help.
By this time my fit had passed. My body was back under control and my speech was getting back to normal. I am now back on the steroids and epilepsy medication that seems to control this symptom.
And today we have a cliff hanger. After a few weeks of waiting as the medical profession try to get tumour cells from my lungs (the difficulty is slightly ironic in the circumstances) we now have a blood test result from Birmingham and both blood and tissue sample results from Ninewells.
Tomorrow morning at 9am we have an appointment with Dr Adamson where we will hear whether my tumour cells have the T790M mutation that will make the new wonderdrug appropriate.
You may have noticed my fondness for quoting, especially from Shakespeare. In this case I will omit the Macbeth quote which begins 'hear it not Duncan, for it is a knell, which summons thee...'
I will however screw my courage to the sticking point.
More news soon
During my 60 odd years the word has seldom been applied to my physique (seldom isn't exactly the right word there either, but never seemed so negative.) I am actually probably as fit now as I have ever been, both thanks to a brief spell of jogging, where I proved to myself that I can actually run 5000m all in a oner without too much resembling a tortoise. And of course the DVLA's decision to remove my driving licence helps a lot.
It is a mile and a half to our nearest bus stop (and back) and since November 2015 I have done the round trip pretty much every day.
For those who share my growing obsession with Fitbit stats I have averaged between 90 and 100,000 steps per week and just under 10km per day during those nearly 18 months.
Also for the record the upper body is perhaps not so taut.
But that is not the meaning that has been most on my mind in the last couple of weeks.
Neither has the more modern sense of fit as meaning sexually attractive. Even during those heady days as 1986 slipped into 1987 and Clare and I got to know each other I don't recall that particular use of the word being used. Perhaps that sense of the word hadn't come into use. Or perhaps my attractions then, as now were more cerebral.
No, the sense of the word I have been most preoccupied with raised its ugly little head around 6.30pm a week past Monday.
I had been sitting at the kitchen table finishing some business paperwork. I got up to get myself a glass of water and on the way to the tap stopped to help myself to a wee handful of tortilla chips, as you do.
I was slightly surprised when they proved a little difficult to swallow and even more surprised when I realised that not only was my tongue rigid and shaking, but my jaws were banging together hard and uncontrollably. This was probably the moment when the next sense of the word 'fit' came into my head. It seemed that I might be having one, and that it was probably a good idea to seek help.
Fortunately my trusty mobile was there and I only had to decide whether 999 or 111 was the more appropriate number to call. But, sorry there was a but and it was my lack of fine motor skills in my arms and hands. It proved surprisingly tricky to get rid of the message screen and to dial the 3 digits (by this time 999 had been chosen).
Fortunately I came up with plan B. Our much abused and little used landline had a handset attached with bigger buttons. I made my way into the hall, legs still sound luckily, and was able to knock three times on the phone in front of me.
Of course I had reckoned without my shoogly arms. While trying to talk into the phone I contrived to pull the receiver lead out of the phone, leaving the emergency operator with a silent call.
I was also in a bit of a predicament. Those of you who know Kilduncan will know that there is a nice comfortable armchair by the hall phone. Had I carefully sat in that, the next 10 minutes would have been easier.
But no, there was another chair. A childs chair, bought for Isaac and Daisy and pretty much the right size for either of them. As luck would have it this was the one encountered by my arse as it performed its gravitational duty, and as luck would have it my acceleration due to gravity was enough to get me firmly wedged in this wee seat.
Now clouds are known for their silver linings and in this case my glint of precious metal was finding my recently dropped mobile and finding that my shoogling was easing and that I was able to make a second attempt at 999. This one was successful and I was eventually able to ask for an ambulance which came promptly.
By the time it got here of course the excitement was pretty much over. I had even managed to extract myself from the kiddy seat.
I can hear you ask 'what about the first 999 call'?
This too was answered, by the police. They responded to a holiday house next door. Not their fault, I think, dad back in the days when I decided to build a house here set on tge name West Kilduncan for what I have alwayd called the Poultry Farm. That is now also the name of the holiday cottage.
They came upon a dark house and hauled a key holder out to open the door to look for a body, and were also prepared to break the door down.
Sincere thanks to both Fife Police and Messrs Logan for their help.
By this time my fit had passed. My body was back under control and my speech was getting back to normal. I am now back on the steroids and epilepsy medication that seems to control this symptom.
And today we have a cliff hanger. After a few weeks of waiting as the medical profession try to get tumour cells from my lungs (the difficulty is slightly ironic in the circumstances) we now have a blood test result from Birmingham and both blood and tissue sample results from Ninewells.
Tomorrow morning at 9am we have an appointment with Dr Adamson where we will hear whether my tumour cells have the T790M mutation that will make the new wonderdrug appropriate.
You may have noticed my fondness for quoting, especially from Shakespeare. In this case I will omit the Macbeth quote which begins 'hear it not Duncan, for it is a knell, which summons thee...'
I will however screw my courage to the sticking point.
More news soon
Wednesday 29 March 2017
Spurious human rights
Way back in 2001 I was called by LBC and asked to talk live on the radio to a London audience on a Fife council decision to invoke European Human Rights legislation to refuse planning permission to the owners of the Cambo Arms Hotel, Kingsbarns' last pub, to close it and develop the site as housing.
Now, I have serious doubts where this rather spurious involvement of human rights played much part in the final planning decision. It had more to do with a very well run campaign by regulars in the pub (he says immodestly) and the decision of the council to count each signature on a petition as a separate objection.
In short, human rights was used as the excuse to do the right thing. The pub is still there and doing rather better than OK.
My taste of media stardom came to nothing. After hanging on for half an hour my interview was dropped in favour of an item on irritable bowel syndrome.
For 16 years I have had to bear the cross of being found less interesting than irritable bowel syndrome.
But now I feel the need to invoke a spurious human right of my own.
Regular readers will know that I bear the dodgiest of diagnoses. One that will, in the absence of miracles, severely limit my lifespan. And the human right I want to suggest is that this should be the worst thing in my life right now.
And it simply isn't.
The thing any dying parent wants to know is that their family will be OK when they are gone.
If I go I will leave a wonderful, strong and clever wife and children as well qualified and talented as I could ever have hoped for. If any are equipped to succeed in the 21st century it is them.
And yet this morning a prime minister nobody elected and who campaigned for us to remain in Europe has decided that her party unity needs us to look for a future outside the EU, worse she has decided that any who oppose this are traitors. And both the conservative party and the supine, leaderless labour party are allowing their policy on Europe to be guided by the disintegrating UKIP. A party who have never had an MP elected to our parliament.
Last June we had an advisory referendum, which was won by a campaign characterised by outright lies from the Leave campaign. Not least of these lies was the attempt to smear the remain campaign as being as dishonest as the leavers.
The greatest of these lies, of course was the promise to give £350m per week to our NHS. This was never any more than an outright lie and even the Leave campaign admit that they would have lost without it.
For nearly 60 years I have been proud to be British but the institutions I have loved and honoured are disintegrating.
The BBC, through the 20th century a beacon of truth, has become enmired in the desperate attempt to maintain a decent level of license fee. As part of this they have adopted a policy of extreme balance.
If climate change is agreed by 99% of scientists this erzatz balance ensures that one scientist has to debate one denier, probably not a scientist as denying scientists are thin on the ground. The verdict is reached, not on evidence, but on the debating ability of these 2 people. And as often as not another nail is knocked into mankinds future as people are allowed to believe there is a debate on anthropogenic climate change where there is none. It is happening and if unchecked may destroy us (well you really)
The BBC insistence on 'balance' bears a high proportion of the blame for the Brexit farce.
Their insistence on giving equal weight to UKIP and Farage during debates, including BBCQT, gave a completely false sense of where the debate was going.
What of the NHS.
I take this rather personally at the moment and my pride in what my fellow citizens who work there are achieving is equalled only at my anger at the London government who are stripping funding from our health service.
Funding for social care has been hammered, certainly in England, perhaps less so north of the border. This means that the NHS also has to fund those patients who could be moved to outside care but who still need beds but whose presence means that critically sick people may spend many hours on trolleys or in corridors waiting for the elusive bed.
Jeremy Cunt, of course, regularly promises new money. Sadly he promises the same new money many times so it is hard to be sure how little of it the NHS will ever see.
Probably not a lot, especially as the last £2 billion promised is to be divided between our NHS and private companies supplying specialist services.
I have had some experience of these external contractors, several of my recent CT scans were privately done. Unlike NHS services they are able to charge cost plus profit. So at best 20% of our taxes go right into private hands (some may come back in tax, but probably not a lot). And even if the guys working the machinery (my experience is limited but all those operating the equipment have been men, maybe equality has to take a back seat in the brave new world of the private NHS) are not paid much more than NHS staff, they have to be paid to drive up from the south, and put up in decent hotels.
And above all this are 2 fictions.
Austerity is the excuse the government uses to take money from the poor and disabled (I, Daniel Blake is not an exaggerated fiction as many of our ruling cabal would like to portray it, but a hideous depiction of what greed and austerity is doing to the weakest in our society).
The second fiction, much voiced by the incoming tory government, is WE ARE ALL IN THIS TOGETHER.
Bollocks.
As Daniel Blake is dehumanised the wealthiest in Britain are steadily getting richer. Austerity doesn't mean that our tax system is fair.
Billions in taxes are avoided, perhaps even evaded, and the money the government spends trying to get back these missing taxes is dwarfed by that spent on reclaiming overpaid benefits, where the government is happy to make a loss on occasion just as long as no scrounger makes a couple of hundred pounds more than the meanest calculation. God forbid any child should have a new pair of shoes they don't deserve.
I am running out of space and time. I don't have time to explain my shame and humiliation as the tory government use European expats living in this country, paying tax, raising children and enriching our society, as bargaining chips in their brexit suicide pact.
Those married to British spouses for 30 years, with British children, being told to prepare for expulsion!
As Scots we have a choice.
I don't know what the outcome of the referendum will be. I am not even absolutely certain how (in the unlikely event I am still here) I would vote.
I do know that I see more of the British values I cherish in the Scottish parliament than I have seen in Westminster these many years. There is still a hope for fairness and honesty so long missing in London.
Independence would be bloody hard work, and we might not be as well off as some of us have been. But perhaps our tolerance of difference, our value for education and the value we could put on public service might allow Scotland to become a nation we can be proud of.
Now, I have serious doubts where this rather spurious involvement of human rights played much part in the final planning decision. It had more to do with a very well run campaign by regulars in the pub (he says immodestly) and the decision of the council to count each signature on a petition as a separate objection.
In short, human rights was used as the excuse to do the right thing. The pub is still there and doing rather better than OK.
My taste of media stardom came to nothing. After hanging on for half an hour my interview was dropped in favour of an item on irritable bowel syndrome.
For 16 years I have had to bear the cross of being found less interesting than irritable bowel syndrome.
But now I feel the need to invoke a spurious human right of my own.
Regular readers will know that I bear the dodgiest of diagnoses. One that will, in the absence of miracles, severely limit my lifespan. And the human right I want to suggest is that this should be the worst thing in my life right now.
And it simply isn't.
The thing any dying parent wants to know is that their family will be OK when they are gone.
If I go I will leave a wonderful, strong and clever wife and children as well qualified and talented as I could ever have hoped for. If any are equipped to succeed in the 21st century it is them.
And yet this morning a prime minister nobody elected and who campaigned for us to remain in Europe has decided that her party unity needs us to look for a future outside the EU, worse she has decided that any who oppose this are traitors. And both the conservative party and the supine, leaderless labour party are allowing their policy on Europe to be guided by the disintegrating UKIP. A party who have never had an MP elected to our parliament.
Last June we had an advisory referendum, which was won by a campaign characterised by outright lies from the Leave campaign. Not least of these lies was the attempt to smear the remain campaign as being as dishonest as the leavers.
The greatest of these lies, of course was the promise to give £350m per week to our NHS. This was never any more than an outright lie and even the Leave campaign admit that they would have lost without it.
For nearly 60 years I have been proud to be British but the institutions I have loved and honoured are disintegrating.
The BBC, through the 20th century a beacon of truth, has become enmired in the desperate attempt to maintain a decent level of license fee. As part of this they have adopted a policy of extreme balance.
If climate change is agreed by 99% of scientists this erzatz balance ensures that one scientist has to debate one denier, probably not a scientist as denying scientists are thin on the ground. The verdict is reached, not on evidence, but on the debating ability of these 2 people. And as often as not another nail is knocked into mankinds future as people are allowed to believe there is a debate on anthropogenic climate change where there is none. It is happening and if unchecked may destroy us (well you really)
The BBC insistence on 'balance' bears a high proportion of the blame for the Brexit farce.
Their insistence on giving equal weight to UKIP and Farage during debates, including BBCQT, gave a completely false sense of where the debate was going.
What of the NHS.
I take this rather personally at the moment and my pride in what my fellow citizens who work there are achieving is equalled only at my anger at the London government who are stripping funding from our health service.
Funding for social care has been hammered, certainly in England, perhaps less so north of the border. This means that the NHS also has to fund those patients who could be moved to outside care but who still need beds but whose presence means that critically sick people may spend many hours on trolleys or in corridors waiting for the elusive bed.
Jeremy Cunt, of course, regularly promises new money. Sadly he promises the same new money many times so it is hard to be sure how little of it the NHS will ever see.
Probably not a lot, especially as the last £2 billion promised is to be divided between our NHS and private companies supplying specialist services.
I have had some experience of these external contractors, several of my recent CT scans were privately done. Unlike NHS services they are able to charge cost plus profit. So at best 20% of our taxes go right into private hands (some may come back in tax, but probably not a lot). And even if the guys working the machinery (my experience is limited but all those operating the equipment have been men, maybe equality has to take a back seat in the brave new world of the private NHS) are not paid much more than NHS staff, they have to be paid to drive up from the south, and put up in decent hotels.
And above all this are 2 fictions.
Austerity is the excuse the government uses to take money from the poor and disabled (I, Daniel Blake is not an exaggerated fiction as many of our ruling cabal would like to portray it, but a hideous depiction of what greed and austerity is doing to the weakest in our society).
The second fiction, much voiced by the incoming tory government, is WE ARE ALL IN THIS TOGETHER.
Bollocks.
As Daniel Blake is dehumanised the wealthiest in Britain are steadily getting richer. Austerity doesn't mean that our tax system is fair.
Billions in taxes are avoided, perhaps even evaded, and the money the government spends trying to get back these missing taxes is dwarfed by that spent on reclaiming overpaid benefits, where the government is happy to make a loss on occasion just as long as no scrounger makes a couple of hundred pounds more than the meanest calculation. God forbid any child should have a new pair of shoes they don't deserve.
I am running out of space and time. I don't have time to explain my shame and humiliation as the tory government use European expats living in this country, paying tax, raising children and enriching our society, as bargaining chips in their brexit suicide pact.
Those married to British spouses for 30 years, with British children, being told to prepare for expulsion!
As Scots we have a choice.
I don't know what the outcome of the referendum will be. I am not even absolutely certain how (in the unlikely event I am still here) I would vote.
I do know that I see more of the British values I cherish in the Scottish parliament than I have seen in Westminster these many years. There is still a hope for fairness and honesty so long missing in London.
Independence would be bloody hard work, and we might not be as well off as some of us have been. But perhaps our tolerance of difference, our value for education and the value we could put on public service might allow Scotland to become a nation we can be proud of.
Monday 13 March 2017
Ex limbo
Not, you will be glad to hear an end to my inglorious career in dancing under low bars. Not that I am unfamiliar to low bars, but generally they offer a little more support than the dancing sort.
Nor yet the religious limbo, which I confess I don't understand at all, but strongly suspect that after a lifetime of atheism I am ineligbible.
I guess that means that my limbo is more slangy than either of these and means only a state of uncertainty which could go either of two ways.
My particular limbo has followed the end of the effectiveness of my wonderdrug Afatinib.
There is another drug, known to its admirers as Osmertinib. To be prescribed this my tumour had to be biopsied and there was (perhaps still is) a little more than a 50% chance that Osmertinib would be active against the mutated cells currently frolicking unfettered in my lungs and elsewhere.
Well the biopsy has failed to produce any cancerous cells. I don't want to go in to this in any more detail; any comments would certainly be libellous, would probably be inaccurate, and in any case unhelpful. We are where we are. Anyway I don't want to dent my adoration of our NHS
We now await a meeting with Dr Adamson, oncologist of note
There is still a chance that we can ask for a second biopsy and perhaps still gain access to WD2.
There is a secondary treatment, a mixed chemotherapy, which I have done too little to learn about. It seems to have more side effects and less chance of positive result. Thinking about it will make me think seriously about quality and quantity of life. I am happy to crawl through barbed wire to spend a year or three in the health I have enjoyed since my first diagnosis, but I am much less keen to accept a few more months as an invalid. (Although I have to say that I have no knowledge of the clinical value of crawling through barbed wire as a treatment. Metaphor alert again)
So here we are, not really out of limbo and for a few hours at least less positive, less humerous than usual.
Love you all.
Friday 17 February 2017
.................................fuck!
I have never been a believer (actually you could probably leave that statement right there but I was going to go on to talk about analysing dreams) that dreams mean much, but...
The other week I had a dream about living in a house with a pet tiger. Our hosts (definitely not home although Clare was there and children and grandchildren put in appearences) repeatedly assured us that the tiger was friendly, in many ways an ideal pet.
And it was a strange tiger. One minute is was large and realistic growling over us, the next it was Disnefied, Tigger on a high windowsill.
It is tempting to see similarities between my dream tiger and the tumour lurking in my lungs (Metastasia?) along with its babies.
Only if we are to pursue the analogy the results of my last scan suggest that Metastasia is no Tigger but a big hungry brute with huge teeth and big scary claws.
The bad news, and to be honest last weeks meeting with my new oncologist, Dr Adamson, brought little but bad news is that...
The days of Afatinib are past. The tumours have developed immunity to Afatinib and are actively growing again and presumably breeding too. Words can be slippery things. We now realise that when we spoke and wrote about WONDER drug we underestimated the seriousness of my condition. The wonder is that it has given me 14 months of rude good health
Thursday's meeting brought only the offer of a two drug chemotherapy regime which often shrinks the tumour. The treatment would be more invasive than I have been used to and the results in the short term, less certain.
Somewhere ahead there are serious decisions to be made regarding the balance between length of survival and quality of life.
That meeting was on Thursday. The weekend was spent in our favourite refuge; with Nikki and Elt and the kids. A good place to lick our wounds and restore our sense of perspective. It isn't completely certain that this was helped by a Friday night with added rum, nor by Scotland's eyewateringly physical defeat in Paris (and if the sport isn't immediately clear you haven't been reading carefully enough, keep up)
On the plus side Ben and Carly joined us, there was a wee chat with IJ about Gramps' lumps and of course a Sunday morning with the kids at Lego Batman.
Monday brought renewed optimism.
It was announced by the Scottish Government that the next generation drug for treating my sort of non small cell lung cancer had been approved.
By 9.30 I had been contacted by Ninewells to confirm that if the mutation on my tumours has the appropriate mutation I will be approved for Osimertinib treatment.
Before that I need another tumour biopsy. There is a little more than a 50:50 chance that it is suitable.
So, at 1.45 on Monday I will be sitting or lying in a room in Ninewells stoned (I think the official term is sedated but I know how I felt last time) waiting for a whiteclad doctor to stick a stainless steel tune into my lung to sample Metastasia.
I suspect that I will be hoping that my retch reflex will be more controlled and my doctor more sympathetic than last time.
More news when I have it.
In the meantime BLESS YOU NHS. Remember the NHS is not failing it is seriously underfunded by our present government.
The other week I had a dream about living in a house with a pet tiger. Our hosts (definitely not home although Clare was there and children and grandchildren put in appearences) repeatedly assured us that the tiger was friendly, in many ways an ideal pet.
And it was a strange tiger. One minute is was large and realistic growling over us, the next it was Disnefied, Tigger on a high windowsill.
It is tempting to see similarities between my dream tiger and the tumour lurking in my lungs (Metastasia?) along with its babies.
Only if we are to pursue the analogy the results of my last scan suggest that Metastasia is no Tigger but a big hungry brute with huge teeth and big scary claws.
The bad news, and to be honest last weeks meeting with my new oncologist, Dr Adamson, brought little but bad news is that...
The days of Afatinib are past. The tumours have developed immunity to Afatinib and are actively growing again and presumably breeding too. Words can be slippery things. We now realise that when we spoke and wrote about WONDER drug we underestimated the seriousness of my condition. The wonder is that it has given me 14 months of rude good health
Thursday's meeting brought only the offer of a two drug chemotherapy regime which often shrinks the tumour. The treatment would be more invasive than I have been used to and the results in the short term, less certain.
Somewhere ahead there are serious decisions to be made regarding the balance between length of survival and quality of life.
That meeting was on Thursday. The weekend was spent in our favourite refuge; with Nikki and Elt and the kids. A good place to lick our wounds and restore our sense of perspective. It isn't completely certain that this was helped by a Friday night with added rum, nor by Scotland's eyewateringly physical defeat in Paris (and if the sport isn't immediately clear you haven't been reading carefully enough, keep up)
On the plus side Ben and Carly joined us, there was a wee chat with IJ about Gramps' lumps and of course a Sunday morning with the kids at Lego Batman.
Monday brought renewed optimism.
It was announced by the Scottish Government that the next generation drug for treating my sort of non small cell lung cancer had been approved.
By 9.30 I had been contacted by Ninewells to confirm that if the mutation on my tumours has the appropriate mutation I will be approved for Osimertinib treatment.
Before that I need another tumour biopsy. There is a little more than a 50:50 chance that it is suitable.
So, at 1.45 on Monday I will be sitting or lying in a room in Ninewells stoned (I think the official term is sedated but I know how I felt last time) waiting for a whiteclad doctor to stick a stainless steel tune into my lung to sample Metastasia.
I suspect that I will be hoping that my retch reflex will be more controlled and my doctor more sympathetic than last time.
More news when I have it.
In the meantime BLESS YOU NHS. Remember the NHS is not failing it is seriously underfunded by our present government.
Monday 2 January 2017
On deadlines
Aye, it has been a while.
I have posted all these blogs on facebook and now facebook comes up with each posting as a memory, I was much more productive at the end of 2015 than I have been this autumn.
Part of the answer, of course, is deadlines.
I have had two spells as a student. Way back in the seventies as a science undergraduate (well, really an Agric but they eventually gave me a BSc) then again across the millennium as a humanities student (after many years of reasonably successful study I retired without a degree). In both of these spells of study I was unable, or unwilling to write anything until the last possible moment before the deadline, or after if I thought I could get away with it.
And so it is with my blog.
Last winter I was confronted with the ultimate deadline, as looming death stood in front of me (there I go with the inept metaphors again. )
Not only did I have a deadline but I had something to say. Something that may have helped others but certainly helped me to absorb the reality of my situation.
And there was an audience. As a student the average, perhaps the maximum audience for anything I wrote was one. Two if you count myself, although I have never been very committed to rereading and revision.
Suddenly I was writing to an audience of several hundred, over a thousand according to google, but many of those, I suspect are readers coming back looking for the next instalment and rereading the old ones in the hope that they may have changed. Not only reading but providing positive feedback (although who would find fault with a tumour bearer's output. It may not be done well but we are surprised it is done at all, as one of the larger British brains of the last three centuries nearly said).
Anyway to my health. From day to day I feel very fit. I cough a bit, hardly surprising with several lumps of me/notme lurking in my lungs. Side effects are negligible at present; to the extent that I ponder whether the lack of symptoms mean that the benefial effects are also waning.
I have of course had a further scan and a meeting with Dr Lord. The scans showed that almost everything in lungs and brain was stable except that some of the smaller nodules (apparently the medical term for something not quite big enough to be called a tumour) in my lungs have grown a little; from around 3mm to almost 4mm.
In my fevered mind this is almost certainly caused by my uncharacteristic air of optimism in my last posting. To compensate I have adopted a more pessimistic attitude this trimester. My next scan is at the end of January with an oncology meeting in early February. I will wait with my usual mixture of hope and fear.
Purely by coincidence my latest appointment with Dr Lord took place exactly a year after my accident which altered our lives almost as much as it altered Ben's wee Fiesta. Since then anniversaries have rushed by of scans and biopsies, of trips to Kirkcaldy and Dundee and on Christmas Eve of my introduction to Afatinib.
It has been hard to choose which of these echoes of the tsunami of emotion which threatened to overwhelm our lives last winter should I commemorate with a blog?
In the end of course I have chosen 'none of the above'. It is the second of January. For the last 2 weeks the house has been a true family home. The hall has echoed with laughter and tears from grandchildren and nieces and nephews while adults enjoy the delicious meals that have flowed from the kitchen thanks to the efforts of Clare and her helpers. Alcohol has flowed in complete defiance of government recommendations.
But today I am alone in the house with time to reflect on my predicament.
I find myself completely accepting that the little beggars I carry will kill me; maybe not today, maybe not tomorrow but soon and... (but there my attempt to shoehorn Casablanca into my oeuvre grinds to a halt). At the same time I am in something very like denial. Like a Schrodingers grandfather I occupy two contradictory states of being at the same time.
Of course New Year is a time to look to the future not really to reflect on the past. So unless or until my rebellious non-small cells force a change I will continue to live life as I always have. I will enjoy the achievements of my children and grandchildren. I will carry on my missionary work on behalf of locally produced free range eggs. It is entirely possible that there will be times when I shall drink to much and laugh almost enough.
I have tried to avoid politics but I can't entirely. It seems highly likely that I will die while in Britain and America the nastiest right wing governments that I have known are in power. Both give strength to xenophobic and racist views and seem to be based on greed and hatred of the other.
I have posted all these blogs on facebook and now facebook comes up with each posting as a memory, I was much more productive at the end of 2015 than I have been this autumn.
Part of the answer, of course, is deadlines.
I have had two spells as a student. Way back in the seventies as a science undergraduate (well, really an Agric but they eventually gave me a BSc) then again across the millennium as a humanities student (after many years of reasonably successful study I retired without a degree). In both of these spells of study I was unable, or unwilling to write anything until the last possible moment before the deadline, or after if I thought I could get away with it.
And so it is with my blog.
Last winter I was confronted with the ultimate deadline, as looming death stood in front of me (there I go with the inept metaphors again. )
Not only did I have a deadline but I had something to say. Something that may have helped others but certainly helped me to absorb the reality of my situation.
And there was an audience. As a student the average, perhaps the maximum audience for anything I wrote was one. Two if you count myself, although I have never been very committed to rereading and revision.
Suddenly I was writing to an audience of several hundred, over a thousand according to google, but many of those, I suspect are readers coming back looking for the next instalment and rereading the old ones in the hope that they may have changed. Not only reading but providing positive feedback (although who would find fault with a tumour bearer's output. It may not be done well but we are surprised it is done at all, as one of the larger British brains of the last three centuries nearly said).
Anyway to my health. From day to day I feel very fit. I cough a bit, hardly surprising with several lumps of me/notme lurking in my lungs. Side effects are negligible at present; to the extent that I ponder whether the lack of symptoms mean that the benefial effects are also waning.
I have of course had a further scan and a meeting with Dr Lord. The scans showed that almost everything in lungs and brain was stable except that some of the smaller nodules (apparently the medical term for something not quite big enough to be called a tumour) in my lungs have grown a little; from around 3mm to almost 4mm.
In my fevered mind this is almost certainly caused by my uncharacteristic air of optimism in my last posting. To compensate I have adopted a more pessimistic attitude this trimester. My next scan is at the end of January with an oncology meeting in early February. I will wait with my usual mixture of hope and fear.
Purely by coincidence my latest appointment with Dr Lord took place exactly a year after my accident which altered our lives almost as much as it altered Ben's wee Fiesta. Since then anniversaries have rushed by of scans and biopsies, of trips to Kirkcaldy and Dundee and on Christmas Eve of my introduction to Afatinib.
It has been hard to choose which of these echoes of the tsunami of emotion which threatened to overwhelm our lives last winter should I commemorate with a blog?
In the end of course I have chosen 'none of the above'. It is the second of January. For the last 2 weeks the house has been a true family home. The hall has echoed with laughter and tears from grandchildren and nieces and nephews while adults enjoy the delicious meals that have flowed from the kitchen thanks to the efforts of Clare and her helpers. Alcohol has flowed in complete defiance of government recommendations.
But today I am alone in the house with time to reflect on my predicament.
I find myself completely accepting that the little beggars I carry will kill me; maybe not today, maybe not tomorrow but soon and... (but there my attempt to shoehorn Casablanca into my oeuvre grinds to a halt). At the same time I am in something very like denial. Like a Schrodingers grandfather I occupy two contradictory states of being at the same time.
Of course New Year is a time to look to the future not really to reflect on the past. So unless or until my rebellious non-small cells force a change I will continue to live life as I always have. I will enjoy the achievements of my children and grandchildren. I will carry on my missionary work on behalf of locally produced free range eggs. It is entirely possible that there will be times when I shall drink to much and laugh almost enough.
I have tried to avoid politics but I can't entirely. It seems highly likely that I will die while in Britain and America the nastiest right wing governments that I have known are in power. Both give strength to xenophobic and racist views and seem to be based on greed and hatred of the other.
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