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.
Thursday 27 April 2017
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
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