The perfect week to talk about hopes and expectation.
We are just over a week from the start of the Rugby 6 Nations Championship. For Scottish fans, at least this century, this has been the best of the tournament. We can look at players on form, developing coaching teams and opposition not quite as good as they used to be and we can really see our way to being really competitive in the tournament. Sadly since 1999 this success has proved elusive, one tournament collapsed as early as 20 minutes into the first match, against Wales as I recall.
This year of course will be different. Although Eddie Jones worries me. Failing to select several of his best players, even trying to instal Scotland as favourites in our match. I hope Scottish coaching staff are thumbing their way through Machiavelli and trying to figure out how to combat these unsporting tactics.
This of course is not the only area of my life where my mind is being exercised by hopes and expectations.
The NHS system, at least as far as I have experienced it is aimed to limit expectation while leaving room for hope.
They stress that even the wonderful Afatinib doesn't work on everybody and that even where it is effective the effect sometimes diminishes after a few months. Almost as an afterthought they mention that some patients are still alive after 3 years.
Tomorrow marks 5 weeks on the drug. As yet we have no way to gauge how well things are going so my hopes and fears are based on how I am feeling. How easily can I breathe? How big is the numb area on my bottom lip.
This is not really an effective system mostly because these looked for signs are very minimal and the variations I am looking for are so tiny as to be hardly detectable.
A large dose of reality will be thrust into this system over the next couple of weeks. 3rd February takes me back to Ninewells for a CT scan then a little under a week later we are back up in Dundee for the results show.
That is going to be a hard week with waves of hope and fear blowing over me like Atlantic weather systems.
A resounding Scottish victory at Murrayfield would really help to get me through that week, particularly as Ben is taking Clare and I to watch the game in person. (And if you are the person who made the tickets available to Ben, thank you very much)
All this hoping and expecting doesn't really take up much of my time (although the rugby is seldom out of my mind). Practical arrangements are much more time consuming.
After 42 years of leaping into cars or vans and going where I like I have been guided into the world of non-drivers, apparently even as few as 2 tumours in a brain makes the DVLA a bit apprehensive about how fit I am to drive (sneaky wee pun there).
My travel is now largely in the hands of Stagecoach buses. The 30 minute walk to and from the bus stop is a bit of a hurdle, although not as big a hurdle as the rain which regularly pisses down ( in fact I am looking nervously out the window to find that not only has this mornings rain stopped but the sun appears to have shown itself (12.43 on Wednesday 27th January 2016).
For the record today's outing will see my defunct laptop delivered for repair in Anstruther. The trip home will include a stop in Crail to buy ingredients for our tea.
There may be time for coffee or even a sneaky half pint while I wait for the next bus.
Weekends are pretty busy here but mid week things are pretty quiet. If you have been thinking of a visit you will be very welcome. Text or call first just in case I am out investigating the 95 bus.
Wednesday, 27 January 2016
Tuesday, 12 January 2016
On drugs and tripping
What to write?
I still have little idea what this blog is about. My life? My history? My disease? My politics?
Probably a bit of all of the above.
My problem is that as far as my disease goes not much is happening. Actually that is untrue. I fervently hope that a lot is happening. Each morning at 6.30 I take a single tablet of Afatinib. I take it with a full glass of water on an empty stomach and I don't eat or drink anything else for an hour afterwards. My fervent hope rests on the ability of this drug to stop my fine collection of tumours from growing and with any luck to start to shrink them.
In Mid February I will be reintroduced to the scanning department at Ninewells. Pictures will be taken. Clever people will examine these pictures. And my future will become clearer
As well as the Main Ingredient I take a variety of other pills, mostly to combat the limited side effects of Afatinib. I had prepared a wee riff on my side effects. Even coined the term 'fart roulette' to describe my relationship with the intermittent diahorrhea that is my main preoccupation at present.
I won't do this. Boasting about my low level of side effects seems disrespectful to the thousands of other people also fighting this crap group of diseases but who are being subjected to much more toxic treatments and who are fighting much harder than I to keep their lives on an even keel in the face of both disease and treatment.
Life is good. Most people who read this will come through my Facebook profile and will have heard plenty about our latest trip. Clare and I have just had a lovely weekend in Paris. A first for us both. We ate and drank well. We sight saw (past tense of sightsee? Perhaps not). We walked miles, or more accurately kilometres, laughed a lot and hugged as much. A holiday as much from non-small cell lung carcinoma as from anything else. Certainly a weekend to treasure.
On a day when junior doctors are striking in England, I can't really avoid some political comment. As one whose entire future is dependent on the NHS, I really fear for the future of our health service. I will try to avoid my all-too-common tumour tourettes ( although is is worth noting that the health secretary in Westminster is formed entirely from rhyming slang).
Better women and men than I, with similar diseases, raise large sums of money for cancer treatment or for research. I don't think I can do that. But if I could persuade 10 people who voted for the present government not to do so again.
I have no way of knowing whether Hunt and Cameron are deliberately damaging the NHS to make it easier to bring in private companies and thus send out millions of pounds in profits to those companies, or if they are simply too stupid to see the inevitable downward trajectory of what they do.
But please, help to stop them, for me, for you or for anyone who might need top quality health care and can't afford to pay full market value for that care.
Inevitably on the day after his death I am listening to David Bowie. I've never been a big fan but Blackstar must always have been a moving listen, but on the day after his death it is almost unbearably so.
And at last I have something in common with Bowie, although I suspect lung cancer is not a connection that either of us would have sought.
Wednesday, 30 December 2015
Angry and ungrateful
It's been a while.
And not because nothing has been happening.
We have had the biennial Endean Christmas extravaganza. Clare's brothers and sisters, their partners and children. This year we all found space to sleep in the house. Just a typical family Christmas. 17 sleeping in the house. Adults who stay up till 3am playing cards and children who like to be up by 7 to start the new day. Sugar rush v alcohol poisoning.
It all came to an end on Monday morning after a Sunday evening of curry, Stabco, wine, more beer, singing, cocktails and much more singing.
Christmas Day was also my introduction to Afatinib. Wonder drug?
Time will tell.
When I came home from Ninewells I had a modest box with the main feature but then half a dozen boxes to cover side effects. 5 days in now and the first side effect has slipped in, or out rather. Imodium seems to be doing the trick.
Still waiting for skin rashes etc.
None of this explains the title of today's epistle.
The responses to what I have written so far have given me a strange odour of sanctity. Inspirational, brave, sensitive. Lovely complements but not really me.
I am still exactly the same grumpy, cantankerous, dull middle aged man who drinks too much and tries to remember not to write controversial emails after a bottle of red late in the evening.
What my diagnosis has robbed the whole family of is normality and me of independence and perhaps a little time.
It is hard at my age to admit that your teenage children were right all along. Kilduncan is a tricky place to live when you can't drive.
On of my listening joys for many years has been Kermode and Mayo's film review. I am a fully paid up member of the church of Wittertainment. I strongly recommend this to anyone with even the most limited interest in movies. What could be more interesting than spending 2 and a half hours each week listening to 2 middle aged men squabbling about films?
Their relevance to this piece is that there is a standing joke which started when Mark Kermode asked how to set up Snapchat. The answer was that you just set up Snapchat.
So clearly the answer to the question how do the Peddie/Foister/Squires family bring back normality to their lives is... They bring back normality to their lives.
I admit that this works better as a smart remark than as plan, a bit of a recurring theme in my life.
The key is the future. We need to embrace it, plan for it, enjoy it. There are children and grandchildren to enjoy and admire. There is a business to run and to plan for, perhaps new opportunities and challenges. There is fun to be had and memories to be made.
But first there is a trip to Paris.
And not because nothing has been happening.
We have had the biennial Endean Christmas extravaganza. Clare's brothers and sisters, their partners and children. This year we all found space to sleep in the house. Just a typical family Christmas. 17 sleeping in the house. Adults who stay up till 3am playing cards and children who like to be up by 7 to start the new day. Sugar rush v alcohol poisoning.
It all came to an end on Monday morning after a Sunday evening of curry, Stabco, wine, more beer, singing, cocktails and much more singing.
Christmas Day was also my introduction to Afatinib. Wonder drug?
Time will tell.
When I came home from Ninewells I had a modest box with the main feature but then half a dozen boxes to cover side effects. 5 days in now and the first side effect has slipped in, or out rather. Imodium seems to be doing the trick.
Still waiting for skin rashes etc.
None of this explains the title of today's epistle.
The responses to what I have written so far have given me a strange odour of sanctity. Inspirational, brave, sensitive. Lovely complements but not really me.
I am still exactly the same grumpy, cantankerous, dull middle aged man who drinks too much and tries to remember not to write controversial emails after a bottle of red late in the evening.
What my diagnosis has robbed the whole family of is normality and me of independence and perhaps a little time.
It is hard at my age to admit that your teenage children were right all along. Kilduncan is a tricky place to live when you can't drive.
On of my listening joys for many years has been Kermode and Mayo's film review. I am a fully paid up member of the church of Wittertainment. I strongly recommend this to anyone with even the most limited interest in movies. What could be more interesting than spending 2 and a half hours each week listening to 2 middle aged men squabbling about films?
Their relevance to this piece is that there is a standing joke which started when Mark Kermode asked how to set up Snapchat. The answer was that you just set up Snapchat.
So clearly the answer to the question how do the Peddie/Foister/Squires family bring back normality to their lives is... They bring back normality to their lives.
I admit that this works better as a smart remark than as plan, a bit of a recurring theme in my life.
The key is the future. We need to embrace it, plan for it, enjoy it. There are children and grandchildren to enjoy and admire. There is a business to run and to plan for, perhaps new opportunities and challenges. There is fun to be had and memories to be made.
But first there is a trip to Paris.
Friday, 18 December 2015
The Force Awakens
Do you see what I did there? Straight on the bandwagon! However in my case space travel and light sabres seem unlikely. There is probably plenty of the dark side lurking in my head and chest to require quite an impressive force.
The force I will put my faith in is our NHS. Science, commitment, hard work and limitless goodwill are powerful allies and I have seen all of these things in abundance since I started this process.
Before I go on. There was a story in yesterday's news that more and more NHS trusts are falling into deficit. What is actually happening is that they are underfunded. Our nation, one of the wealthiest on the planet, is choosing to put possibly the greatest health service in the world at risk in the name of some dubious 'austerity' budgeting.
Look around. We are spending money in huge quantity. Bomb Syrian civilians, no problem here is a blank cheque (and look, armaments shares have risen, result!)
£167 billion to put nuclear weapons in submarines. No problem, national prestige demands it.
No, it won't actually help fight terrorism and no, if Trump becomes US president and we can no longer look for friends in the west neither can we point the things west. Or probably anywhere without US permission.
Enough of a rant, but if someone tries to tell you that what the NHS needs to improve is less money please don't believe them. The task of government is to calculate how much money their public services need and to find that money. If efficiency savings can be made, brilliant but you can't find efficiency savings by imposing blanket 3% per annum cuts. And if your policy relies on driving the incomes of medical and other staff to poverty levels. Think again.
Some slightly better news this week. We had an appointment with an oncologist, Dr Lord at Ninewells hospital. This came with the result of a final test.
In lung cancer patients who have never smoked there is an increased chance that the cancer is caused by a specific genetic change. This was the final test whose results we got on Tuesday. My cancer is in this category.
What this means in practical terms is that the outcome may be a little better but that the drug I need to take, Afatinib, strictly speaking a biological control rather than chemotherapy, is taken as a daily tablet rather than intravenously. The side effects while still present are less severe. Scoots and plooks basically. Not necessarily much longer life but hopefully more of that in decent health.
Next appointment is on Christmas Eve when we will get the drugs. Then the process begins...
Pip and Great Expectations came back into my life this morning. Not in this case the much read and much loved classic. PIP in this case is a Personal Independence Payment and my expectations are limited to £82 per week. But all in all not a bad first step into our nations Benefit system.
After my last post I have done a bit of thinking about bravery. I think true bravery needs a choice to be made to risk life or limb. Fire fighters going into burning buildings, police officers confronting armed criminals or military personnel putting themseloves in harms way all rely on training and bravery to carry out their duties.
I can give another example of courage from my own family.
When we were small mum and dad had a photograph of a little girl hanging on the wall of their bedroom. I don't remember being told but we knew that she was our big sister and that she had died as a young child.
Over the years we learned more detail but very little of it from mum and dad.
Alison was 3 when she was killed in a hay fire in a shed at Ratho Mains in Midlothian on Easter Sunday 1957. By one of the coincidences that happen so often the farm is now owned by close friends of mine. In 1957 it was owned by equally close friends of mum and dad. Alison was outside with a slightly older child. A fire started and she was killed.
So far so tragic. The bravery came later.
I think the death almost broke mum, dad dealt with the decision by throwing himself into work. I don't doubt his bravery but it is mum's I want to talk about.
She was left with a gaping hole in her life and an eleven month old son, Donald.
Her bravery lay in the decision she now made. She and dad had three more children. But they barely shared their sadness with us. We knew she hated us playing with fire but not why.
And she filled Coal Farm with love. Having lost her daughter she made it a special place for her nieces of about the same age. As we boys grew older she chose to give us childhoods completely unburdened with her tragedy.
For my 40th birthday she gave me a wee photo album among all the fading photos of a gawky boy growing up was one little black and white picture of a toddler, a wee girl, about the age Daisy is now. She is looking into a pram containing a baby. The caption reads "you and your sister, who loved you".
True unselfish courage over most of a life.
The force I will put my faith in is our NHS. Science, commitment, hard work and limitless goodwill are powerful allies and I have seen all of these things in abundance since I started this process.
Before I go on. There was a story in yesterday's news that more and more NHS trusts are falling into deficit. What is actually happening is that they are underfunded. Our nation, one of the wealthiest on the planet, is choosing to put possibly the greatest health service in the world at risk in the name of some dubious 'austerity' budgeting.
Look around. We are spending money in huge quantity. Bomb Syrian civilians, no problem here is a blank cheque (and look, armaments shares have risen, result!)
£167 billion to put nuclear weapons in submarines. No problem, national prestige demands it.
No, it won't actually help fight terrorism and no, if Trump becomes US president and we can no longer look for friends in the west neither can we point the things west. Or probably anywhere without US permission.
Enough of a rant, but if someone tries to tell you that what the NHS needs to improve is less money please don't believe them. The task of government is to calculate how much money their public services need and to find that money. If efficiency savings can be made, brilliant but you can't find efficiency savings by imposing blanket 3% per annum cuts. And if your policy relies on driving the incomes of medical and other staff to poverty levels. Think again.
Some slightly better news this week. We had an appointment with an oncologist, Dr Lord at Ninewells hospital. This came with the result of a final test.
In lung cancer patients who have never smoked there is an increased chance that the cancer is caused by a specific genetic change. This was the final test whose results we got on Tuesday. My cancer is in this category.
What this means in practical terms is that the outcome may be a little better but that the drug I need to take, Afatinib, strictly speaking a biological control rather than chemotherapy, is taken as a daily tablet rather than intravenously. The side effects while still present are less severe. Scoots and plooks basically. Not necessarily much longer life but hopefully more of that in decent health.
Next appointment is on Christmas Eve when we will get the drugs. Then the process begins...
Pip and Great Expectations came back into my life this morning. Not in this case the much read and much loved classic. PIP in this case is a Personal Independence Payment and my expectations are limited to £82 per week. But all in all not a bad first step into our nations Benefit system.
After my last post I have done a bit of thinking about bravery. I think true bravery needs a choice to be made to risk life or limb. Fire fighters going into burning buildings, police officers confronting armed criminals or military personnel putting themseloves in harms way all rely on training and bravery to carry out their duties.
I can give another example of courage from my own family.
When we were small mum and dad had a photograph of a little girl hanging on the wall of their bedroom. I don't remember being told but we knew that she was our big sister and that she had died as a young child.
Over the years we learned more detail but very little of it from mum and dad.
Alison was 3 when she was killed in a hay fire in a shed at Ratho Mains in Midlothian on Easter Sunday 1957. By one of the coincidences that happen so often the farm is now owned by close friends of mine. In 1957 it was owned by equally close friends of mum and dad. Alison was outside with a slightly older child. A fire started and she was killed.
So far so tragic. The bravery came later.
I think the death almost broke mum, dad dealt with the decision by throwing himself into work. I don't doubt his bravery but it is mum's I want to talk about.
She was left with a gaping hole in her life and an eleven month old son, Donald.
Her bravery lay in the decision she now made. She and dad had three more children. But they barely shared their sadness with us. We knew she hated us playing with fire but not why.
And she filled Coal Farm with love. Having lost her daughter she made it a special place for her nieces of about the same age. As we boys grew older she chose to give us childhoods completely unburdened with her tragedy.
For my 40th birthday she gave me a wee photo album among all the fading photos of a gawky boy growing up was one little black and white picture of a toddler, a wee girl, about the age Daisy is now. She is looking into a pram containing a baby. The caption reads "you and your sister, who loved you".
True unselfish courage over most of a life.
Monday, 14 December 2015
TheThane of Cawdor lives...
An enigmatic title, and you may have to do a little research to find the precise quote I am thinking of. I could offer you my copy of The Norton Shakespeare, about half a hundred weight of literary genius, and a souvenir of my years of Open University study. In the end I didn't come out with a degree, mostly because I discovered that child rearing was rather more rewarding and much more immediate than studying the humanities.
Every course I studied gave me a new work of which I was previously ignorant but which has enriched my life since. In the case of Bill the Bard I got the poetry. The 1996 movie based on a Royal Shakespeare Company production did it for A Midsummer Nights Dream. Richard II was the other play that blew me away. I saw it twice at The Globe in London in 2003 with Mark Rylance as Richard. Theatre, actor, rest of cast, production. All wonderful (I realise I use that word too much, sorry if I am sounding like Pollyanna or perhaps since I am being arty farty, Candide).
A better title might have been 'Why blog'.
When episode one came out I thought I was doing it so that friends could read about my condition and when we met or spoke we wouldn't have to waste time on the illness and could immediately chat about the things that had made us friends in the first place, although in many cases we have been friends for so long that the beginning is lost in history.
Things have moved on and I have discovered many other, possibly more selfish reasons.
And yes VANITY is right up there. I confess that I do study the numbers. To find that well over a thousand people looked at the last episode gave me a huge kick (mathematically it might have been a hundred people looking 10 times each but that might actually be better).
That so many of you took the time to like, share and comment was humbling. Many of you spoke about my bravery, not a word that has often been associated with me in the last 60 years, and not quite accurate in this case but I will come back to it. Perhaps not today, space is limited and I do need to get to TUMOUR TOURETTES.
I have also discovered that blogging is a highly therapeutic exercise. I have never slept all that long at night. This may shock people who have seen me sleep for Scotland in licensed premises after a tube or two of wine gums.
I don't class myself as an insomniac, I have radio and earphones set up to listen to and I assume that if I was tired I would be asleep. In the last month rather than think about the illness I have been able to think about what I would write about it. The difference doesn't sound much but actually it puts everything in the third person and clears a space round about me.
A final reason to blog is that it allows me to blot out the large heap of egg based paperwork I should be grafting over right now! Displacement activity!
Rage has a place in my predicament. Not against the condition. That is nobody's fault, I have no supernatural entity to blame or to beg to.
No, my rage expresses itself in what Clare has christened TUMOUR TOURETTES. It takes the form of an increasing level of intolerance aimed at what I see as intolerance. There are many expletives, the occasional stomping out of rooms, with or without door slamming.
What, you may well ask, ignites this extraordinary behaviour? A short list follows:
The British Government and its policies or at least any policy which involves wealth redistribution from the poor or the disabled or the merely feckless to the 24% of our population who had the bad taste to vote for them. You were wrong!
And did I mention their decision to move away from renewable energy to gas and nuclear (almost certainly pronounced nucular round the cabinet table).
Or the decision after watching the hideous waste of life at the Bataclan where France wisely didn't institute airstrikes in Paris to clinically take out the terrorists, to start these airstrikes on Syria where the dead civilians could be renamed collateral damage.
Or the bloody Daily Mail, and don't get me started on the US Republican Party presidential candidates. AND BLOODY DONALD TRUMP AND WHO THE HELL IS KATIE HOPKINS.
and breathe.
Every course I studied gave me a new work of which I was previously ignorant but which has enriched my life since. In the case of Bill the Bard I got the poetry. The 1996 movie based on a Royal Shakespeare Company production did it for A Midsummer Nights Dream. Richard II was the other play that blew me away. I saw it twice at The Globe in London in 2003 with Mark Rylance as Richard. Theatre, actor, rest of cast, production. All wonderful (I realise I use that word too much, sorry if I am sounding like Pollyanna or perhaps since I am being arty farty, Candide).
A better title might have been 'Why blog'.
When episode one came out I thought I was doing it so that friends could read about my condition and when we met or spoke we wouldn't have to waste time on the illness and could immediately chat about the things that had made us friends in the first place, although in many cases we have been friends for so long that the beginning is lost in history.
Things have moved on and I have discovered many other, possibly more selfish reasons.
And yes VANITY is right up there. I confess that I do study the numbers. To find that well over a thousand people looked at the last episode gave me a huge kick (mathematically it might have been a hundred people looking 10 times each but that might actually be better).
That so many of you took the time to like, share and comment was humbling. Many of you spoke about my bravery, not a word that has often been associated with me in the last 60 years, and not quite accurate in this case but I will come back to it. Perhaps not today, space is limited and I do need to get to TUMOUR TOURETTES.
I have also discovered that blogging is a highly therapeutic exercise. I have never slept all that long at night. This may shock people who have seen me sleep for Scotland in licensed premises after a tube or two of wine gums.
I don't class myself as an insomniac, I have radio and earphones set up to listen to and I assume that if I was tired I would be asleep. In the last month rather than think about the illness I have been able to think about what I would write about it. The difference doesn't sound much but actually it puts everything in the third person and clears a space round about me.
A final reason to blog is that it allows me to blot out the large heap of egg based paperwork I should be grafting over right now! Displacement activity!
Rage has a place in my predicament. Not against the condition. That is nobody's fault, I have no supernatural entity to blame or to beg to.
No, my rage expresses itself in what Clare has christened TUMOUR TOURETTES. It takes the form of an increasing level of intolerance aimed at what I see as intolerance. There are many expletives, the occasional stomping out of rooms, with or without door slamming.
What, you may well ask, ignites this extraordinary behaviour? A short list follows:
The British Government and its policies or at least any policy which involves wealth redistribution from the poor or the disabled or the merely feckless to the 24% of our population who had the bad taste to vote for them. You were wrong!
And did I mention their decision to move away from renewable energy to gas and nuclear (almost certainly pronounced nucular round the cabinet table).
Or the decision after watching the hideous waste of life at the Bataclan where France wisely didn't institute airstrikes in Paris to clinically take out the terrorists, to start these airstrikes on Syria where the dead civilians could be renamed collateral damage.
Or the bloody Daily Mail, and don't get me started on the US Republican Party presidential candidates. AND BLOODY DONALD TRUMP AND WHO THE HELL IS KATIE HOPKINS.
and breathe.
Friday, 11 December 2015
Squeaky bum time
I have been toying with 'mountain to climb' metaphor to explain the outcome of my meeting yesterday. Let's try is again to see how far it takes us.
There is indeed a mountain, a big one. We can't go under it, we can't go round it, we have to go over it (with apologies to Michael Rosen). The road which we will start on is narrow and steep and we can't see how far it goes. And there are more mountains beyond this big one. Lots.
That, I think is why metaphor and analogy should be left to skilled writers who can make their meanings quite clear.
Fortunately our meeting with Carol Connolly, a Macmillan Cancer Nurse Specialist at the Victoria Hospital in Kirkcaldy gave us a wonderful example of how to talk 2 frightened people through news they never wanted to hear and were barely prepared to listen to.
The facts then.
I have a sizeable tumour in my right lung. This has metastisised not only into the pleura (the membrane surrounding the lungs) but into my brain. Twice. These tumours in my brain caused my initial black out and the demise of Ben's Fiesta.
There are too many tumours for surgery or radiotherapy to be viable options. There are chemotherapy options.
We have a name for the condition. It is a non-small cell lung cancer and the cell type is adenocarcinoma. This is not as fast growing as the small cell type. But that is just about the limit of the good news.
There is no chance of a cure or of remission (although the latter word was never mentioned).
The chemotherapy treatments I am likely to be offered elicit 3 levels of response.
In one third of patients the tumours shrink significantly. In another third they stop growing. In the final third there is little effect on the growth of the tumour.
When I spoke about the irony of someone who has never smoked being afflicted with lung cancer Carol told us about a final test which has been done but for which no results are available yet. This cancer can be the result of a mutation (not a genetic defect you are born with) but only in 5-10% of sufferers. This would be treated with tablets rather than intravenously. The rate of success is slightly higher if this happens.
Our next step is to meet with an oncologist at Ninewells in Dundee. She is likely to offer 2 courses of chemo initially, this would cover around 6 weeks. After that it depends on how effective the treatment is proving and how well my health is standing up.
The meeting wasn't the hardest part of the day. Nicci, Elton, James and Ben had to be told.
I can honestly say I have never been prouder of our children or loved them more. There were tears but there was also laughter. If I have done nothing else worthwhile with my life I have helped Clare to raise a family who will cope with whatever the next year brings with courage and good humour.
It may be that I can offer some advice n how best to approach the tumour studded grumpy old git.
My views on people have become more extreme. If I liked you before then I will almost certainly like you even more now, but I am more likely to say so. I am likely to laugh and hug you. If you are particularly nice to me I may cry. This is not a problem but may result in extended hugging.
I think we need to talk about man hugs. Many of us find these awkward. This simply means we need more practise, it will get easier.
Now we have hugged and said hello what should we talk about?
Almost anything, is the short answer. I am happy to talk about my condition and I will do my utmost not to make anyone feel uncomfortable. Talking about other peoples cancers with successful or unsuccessful outcomes is tricky but I will cope. We may need another hug though.
Talking about the past is perfect. I am having a lovely life and will be happy to tell you the same 3 stories I have been telling you for the past 30 or 40 years and to hear yours.
Talking about the future is also perfect. My own future may be uncertain but I can still feel joy in hearing about your plans, your hopes for yourself or your children or the chances of Scotland winning the Six Nations any time soon (anyone with connections at Murrayfield might mention that this season would be good).
I can even handle religion. If someone I love and respect offers me prayers i am happy to accept them. The deal I ask is that you don't try to convert me. In exchange I won't try to convert you. We can even have that discussion. But in front of a roaring fire with a glass of malt in hand.
I do have to warn you about what the family have christened
There is indeed a mountain, a big one. We can't go under it, we can't go round it, we have to go over it (with apologies to Michael Rosen). The road which we will start on is narrow and steep and we can't see how far it goes. And there are more mountains beyond this big one. Lots.
That, I think is why metaphor and analogy should be left to skilled writers who can make their meanings quite clear.
Fortunately our meeting with Carol Connolly, a Macmillan Cancer Nurse Specialist at the Victoria Hospital in Kirkcaldy gave us a wonderful example of how to talk 2 frightened people through news they never wanted to hear and were barely prepared to listen to.
The facts then.
I have a sizeable tumour in my right lung. This has metastisised not only into the pleura (the membrane surrounding the lungs) but into my brain. Twice. These tumours in my brain caused my initial black out and the demise of Ben's Fiesta.
There are too many tumours for surgery or radiotherapy to be viable options. There are chemotherapy options.
We have a name for the condition. It is a non-small cell lung cancer and the cell type is adenocarcinoma. This is not as fast growing as the small cell type. But that is just about the limit of the good news.
There is no chance of a cure or of remission (although the latter word was never mentioned).
The chemotherapy treatments I am likely to be offered elicit 3 levels of response.
In one third of patients the tumours shrink significantly. In another third they stop growing. In the final third there is little effect on the growth of the tumour.
When I spoke about the irony of someone who has never smoked being afflicted with lung cancer Carol told us about a final test which has been done but for which no results are available yet. This cancer can be the result of a mutation (not a genetic defect you are born with) but only in 5-10% of sufferers. This would be treated with tablets rather than intravenously. The rate of success is slightly higher if this happens.
Our next step is to meet with an oncologist at Ninewells in Dundee. She is likely to offer 2 courses of chemo initially, this would cover around 6 weeks. After that it depends on how effective the treatment is proving and how well my health is standing up.
The meeting wasn't the hardest part of the day. Nicci, Elton, James and Ben had to be told.
I can honestly say I have never been prouder of our children or loved them more. There were tears but there was also laughter. If I have done nothing else worthwhile with my life I have helped Clare to raise a family who will cope with whatever the next year brings with courage and good humour.
It may be that I can offer some advice n how best to approach the tumour studded grumpy old git.
My views on people have become more extreme. If I liked you before then I will almost certainly like you even more now, but I am more likely to say so. I am likely to laugh and hug you. If you are particularly nice to me I may cry. This is not a problem but may result in extended hugging.
I think we need to talk about man hugs. Many of us find these awkward. This simply means we need more practise, it will get easier.
Now we have hugged and said hello what should we talk about?
Almost anything, is the short answer. I am happy to talk about my condition and I will do my utmost not to make anyone feel uncomfortable. Talking about other peoples cancers with successful or unsuccessful outcomes is tricky but I will cope. We may need another hug though.
Talking about the past is perfect. I am having a lovely life and will be happy to tell you the same 3 stories I have been telling you for the past 30 or 40 years and to hear yours.
Talking about the future is also perfect. My own future may be uncertain but I can still feel joy in hearing about your plans, your hopes for yourself or your children or the chances of Scotland winning the Six Nations any time soon (anyone with connections at Murrayfield might mention that this season would be good).
I can even handle religion. If someone I love and respect offers me prayers i am happy to accept them. The deal I ask is that you don't try to convert me. In exchange I won't try to convert you. We can even have that discussion. But in front of a roaring fire with a glass of malt in hand.
I do have to warn you about what the family have christened
Wednesday, 9 December 2015
Home and thoughtful
It has been a strange five weeks. But by no means the worst.
At present of course I have no idea what the future holds. I know there is cancer, and metastasising. But they are just words which don't really have any reality.
I was asked this week whether I liked to talk about the word cancer.
I think it is important. I feel pretty much like Harry Potter talking about Voldemort. Reality is scary enough without wrapping it in fear and ignorance. By the end of this week we will have a better name. Tom Riddle may be a clever little bastard but a human foe. If the diagnosis we get is lung cancer, which seems possible, the irony is huge for someone whose ability to inhale tobacco smoke was so limited that when he bought a joint in a coffee shop in Amsterdam his wife had to smoke it for him. Riddikulus.
How do I feel then?
It is now Wednesday lunch time. Tomorrow morning in Kirkcaldy will tell me a lot about my immediate future. I am unusually optimistic but I have to keep alive the knowledge that the news may not be what we hope for. The shock otherwise would be too much.
So I feel good. Not working very hard but I almost have the business ready to sail on without me till I am fit enough to climb back into my white van. I am eating like a pig and drinking a little more beer than is strictly necessary to wash it down. There may come a time when I feel like neither and I might be glad of the half a stone I have put on.
I have always admired the epitaph Paul Edington, most famous for Yes Minister, chose "He did very little harm" may seem unambitious but few of us can achieve it. Of course I have never been rich in personal ambition.
There is a guilt in the knowledge that my illness is hurting those around me. Not the fierce guilt that I have done something wrong and can change anything but the constant knowledge that by behaving well I can make it easier for them. They of course make it easy to behave well. I have managed somehow to surround myself with a marvellous group of family and friends.
You have probably realised that I am fond of rugby. This is largely because of the teams that it builds. Groups of young people who work very hard together and who learn to look after each other in physical danger and in the almost equally dangerous social life that surrounds it. It builds friendships which last lifetimes.
My rugby credentials are largely fraudulent. In 1972 I became one of the skinniest and least skilled players ever to play second row for the Strathallan School 6th XV. That I played the match despite a severe back sprain, and contributed even less than my limited skill set would have allowed, suggests that I had entirely missed the whole teamwork ethic.
True but since then I have had good teachers.
James and Ben have both gained from playing the game. This would be a good moment to mention that James captained Rob Dewey in the Madras College 3rd year XV. Ben's pride when he unearthed this little remembered fact in the school's online archive was heart warming.
The family and friends around me now give me the same sense of confident reassurance.
There is a second source of guilt.
Since I have learned about my problem many many people have told or reminded me that someone close to them has had similar health problems. Now that I realise how important it has been to me that those I care for react to my news by coming towards me and talking I feel bad that I have not been as good a friend as I could have been to others.
Don't worry about saying the wrong thing. I reserve the right to laugh or hug randomly but will be grateful.
Hmm, not to many laughs today so I will leave you with a vignette from a Belfast Saturday night, or more accurately Sunday morning.
Mr Peddie, after enjoying a very fine Indian meal washed down with good company and lashings of, well not ginger beer, but Cabernet Sauvignon. (Enid Blyton reference, sorry it's my age and upbringing.), insisted that the assembled company reassemble in the Errigle pub where a very fine Jaipur IPA was being served.
Around 1.30am even I had had enough and had retired to bed in that fully clothed flat out on back pose so beloved of wives and so certain to ensure maximum snoring. Significantly I also had my glasses on.
About an hour later I revived briefly. As always my first act on waking was to put my specs on. As you may recall I already had mine on, so the pair I found were Clare's. She was woken by a noisy man wearing 2 pairs of glasses complaining loudly that he couldn't see his phone properly to find out what time it was. (2.30 I am reliably informed)
Enough? I will be back with hard news in a day or two.
How do I feel then?
It is now Wednesday lunch time. Tomorrow morning in Kirkcaldy will tell me a lot about my immediate future. I am unusually optimistic but I have to keep alive the knowledge that the news may not be what we hope for. The shock otherwise would be too much.
So I feel good. Not working very hard but I almost have the business ready to sail on without me till I am fit enough to climb back into my white van. I am eating like a pig and drinking a little more beer than is strictly necessary to wash it down. There may come a time when I feel like neither and I might be glad of the half a stone I have put on.
I have always admired the epitaph Paul Edington, most famous for Yes Minister, chose "He did very little harm" may seem unambitious but few of us can achieve it. Of course I have never been rich in personal ambition.
There is a guilt in the knowledge that my illness is hurting those around me. Not the fierce guilt that I have done something wrong and can change anything but the constant knowledge that by behaving well I can make it easier for them. They of course make it easy to behave well. I have managed somehow to surround myself with a marvellous group of family and friends.
You have probably realised that I am fond of rugby. This is largely because of the teams that it builds. Groups of young people who work very hard together and who learn to look after each other in physical danger and in the almost equally dangerous social life that surrounds it. It builds friendships which last lifetimes.
My rugby credentials are largely fraudulent. In 1972 I became one of the skinniest and least skilled players ever to play second row for the Strathallan School 6th XV. That I played the match despite a severe back sprain, and contributed even less than my limited skill set would have allowed, suggests that I had entirely missed the whole teamwork ethic.
True but since then I have had good teachers.
James and Ben have both gained from playing the game. This would be a good moment to mention that James captained Rob Dewey in the Madras College 3rd year XV. Ben's pride when he unearthed this little remembered fact in the school's online archive was heart warming.
The family and friends around me now give me the same sense of confident reassurance.
There is a second source of guilt.
Since I have learned about my problem many many people have told or reminded me that someone close to them has had similar health problems. Now that I realise how important it has been to me that those I care for react to my news by coming towards me and talking I feel bad that I have not been as good a friend as I could have been to others.
Don't worry about saying the wrong thing. I reserve the right to laugh or hug randomly but will be grateful.
Hmm, not to many laughs today so I will leave you with a vignette from a Belfast Saturday night, or more accurately Sunday morning.
Mr Peddie, after enjoying a very fine Indian meal washed down with good company and lashings of, well not ginger beer, but Cabernet Sauvignon. (Enid Blyton reference, sorry it's my age and upbringing.), insisted that the assembled company reassemble in the Errigle pub where a very fine Jaipur IPA was being served.
Around 1.30am even I had had enough and had retired to bed in that fully clothed flat out on back pose so beloved of wives and so certain to ensure maximum snoring. Significantly I also had my glasses on.
About an hour later I revived briefly. As always my first act on waking was to put my specs on. As you may recall I already had mine on, so the pair I found were Clare's. She was woken by a noisy man wearing 2 pairs of glasses complaining loudly that he couldn't see his phone properly to find out what time it was. (2.30 I am reliably informed)
Enough? I will be back with hard news in a day or two.
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