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.

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.

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.

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.

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

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.

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.