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.

.................................fuck!

I have never been a believer (actually you could probably leave that statement right there but I was going to go on to talk about analysing dreams) that dreams mean much, but...
The other week I had a dream about living in a house with a pet tiger. Our hosts (definitely not home although Clare was there and children and grandchildren put in appearences) repeatedly assured us that the tiger was friendly, in many ways an ideal pet.
And it was a strange tiger. One minute is was large and realistic growling over us, the next it was Disnefied, Tigger on a high windowsill.
It is tempting to see similarities between my dream tiger and the tumour lurking in my lungs (Metastasia?) along with its babies.

Only if we are to pursue the analogy the results of my last scan suggest that Metastasia is no Tigger but a big hungry brute with huge teeth and big scary claws.

The bad news, and to be honest last weeks meeting with my new oncologist, Dr Adamson, brought little but bad news is that...
The days of Afatinib are past. The tumours have developed immunity to Afatinib and are actively growing again and presumably breeding too. Words can be slippery things.  We now realise that when we spoke and wrote about WONDER drug we underestimated the seriousness of my condition. The wonder is that it has given me 14 months of rude good health
Thursday's meeting brought only the offer of a two drug chemotherapy regime which often shrinks the tumour. The treatment would be more invasive than I have been used to and the results in the short term, less certain.
Somewhere ahead there are serious decisions to be made regarding the balance between length of survival and quality of life.

That meeting was on Thursday. The weekend was spent in our favourite refuge; with Nikki and Elt and the kids. A good place to lick our wounds and restore our sense of perspective. It isn't completely certain that this was helped by a Friday night with added rum, nor by Scotland's eyewateringly physical defeat in Paris (and if the sport isn't immediately clear you haven't been reading carefully enough, keep up)
On the plus side Ben and Carly joined us, there was a wee chat with IJ about Gramps' lumps and of course a Sunday morning with the kids at Lego Batman.

Monday brought renewed optimism.
It was announced by the Scottish Government that the next generation drug for treating my sort of non small cell lung cancer had been approved.
By 9.30 I had been contacted by Ninewells to confirm that if the mutation on my tumours has the appropriate mutation I will be approved for Osimertinib treatment.
Before that I need another tumour biopsy. There is a little more than a 50:50  chance that it is suitable.
So, at 1.45 on Monday I will be sitting or lying in a room in Ninewells stoned (I think the official term is sedated but I know how I felt last time) waiting for a whiteclad doctor to stick a stainless steel tune into my lung to sample Metastasia.
I suspect that I will be hoping that my retch reflex will be more controlled and my doctor more sympathetic than last time.

More news when I have it.

In the meantime BLESS YOU NHS. Remember the NHS is not failing it is seriously underfunded by our present government.

On deadlines

Aye, it has been a while.
I have posted all these blogs on facebook and now facebook comes up with each posting as a memory, I was much more productive at the end of 2015 than I have been this autumn.
Part of the answer, of course, is deadlines.
I have had two spells as a student. Way back in the seventies as a science undergraduate (well, really an Agric but they eventually gave me a BSc) then again across the millennium as a humanities student (after many years of reasonably successful study I retired without  a degree). In both of these spells of study I was unable, or unwilling to write anything until the last possible moment before the deadline, or after if I thought I could get away with it.
And so it is with my blog.
Last winter I was confronted with the ultimate deadline, as looming death stood in front of me (there I go with the inept metaphors again. )
Not only did I have a deadline but I had something to say. Something that may have helped others but certainly helped me to absorb the reality of my situation.
And there was an audience. As a student the average, perhaps the maximum audience for anything I wrote was one. Two if you count myself, although I have never been very committed to rereading and revision.
Suddenly I was writing to an audience of several hundred, over a thousand according to google, but many of those, I suspect are readers coming back looking for the next instalment and rereading the old ones in the hope that they may have changed. Not only reading but providing positive feedback (although who would find fault with a tumour bearer's output. It may not be done well but we are surprised it is done at all, as one of the larger British brains of the last three centuries nearly said).

Anyway to my health. From day to day I feel very fit. I cough a bit, hardly surprising with several lumps of me/notme lurking in my lungs. Side effects are negligible at present; to the extent that I ponder whether the lack of symptoms mean that the benefial effects are also waning.
I have of course had a further scan and a meeting with Dr Lord. The scans showed that almost everything in lungs and brain was stable except that some of the smaller nodules (apparently the medical term for something not quite big enough to be called a tumour) in my lungs have grown a little; from around 3mm to almost 4mm.
In my fevered mind this is almost certainly caused by my uncharacteristic air of optimism in my last posting. To compensate I have adopted a more pessimistic attitude this trimester. My next scan  is at the end of January with an oncology meeting in early February. I will wait with my usual mixture of hope and fear.

Purely by coincidence my latest appointment with Dr Lord took place exactly a year after my accident which altered our lives almost as much as it altered Ben's wee Fiesta. Since then anniversaries have rushed by of scans and biopsies, of trips to Kirkcaldy and Dundee and on Christmas Eve  of my introduction to Afatinib.

It has been hard to choose which of these echoes of the tsunami of emotion which threatened to overwhelm our lives last winter should I commemorate with a blog?
In the end of course I have chosen 'none of the above'. It is the second of January. For the last 2 weeks the house has been a true family home. The hall has echoed with laughter and tears from grandchildren and nieces and nephews while adults enjoy the delicious meals that have flowed from the kitchen thanks to the efforts of Clare and her helpers. Alcohol has flowed in complete defiance of government recommendations.
But today I am alone in the house with time to reflect on  my predicament.

I find myself completely accepting that the little beggars I carry will kill me; maybe not today, maybe not tomorrow but soon and... (but there my attempt to shoehorn Casablanca into my oeuvre grinds to a halt). At the same time I am in something very like denial. Like a Schrodingers grandfather I occupy two contradictory states of being at the same time.
Of course New Year is a time to look to the future not really to reflect on the past. So unless or until my rebellious non-small cells force a change I will continue to live life as I always have.  I will enjoy the achievements of my children and grandchildren. I will carry on my missionary work on behalf of locally produced free range eggs. It is entirely possible that there will be times when I shall drink to much and laugh almost enough.

 I have tried to avoid politics but I can't entirely. It seems highly likely that I will die while in Britain and America the nastiest right wing governments that I have known are in power. Both give strength to xenophobic and racist views and seem to be based on greed and hatred of the other.

Positivity and pessimism

In my earlier middle age I did a few arts courses at the Open University. This led to a degree of familiarity (no degree, alas, but that is a completely different story) with the dark arts of close textual analysis. I hesitate to try to define this technique for fear that some may read this who actually know what I am talking about, but I take it to mean the microscopic examination of words and combinations of words to try to divine the author's meaning or to prove a pet theory of the student or some combination of the above. 

This technique slipped unbidden into my mind after a nurse practitioner at Ninewells used the word "stable".

Now this wasn't as you might imagine a conversation about horses and their housing. 

A lovely, sympathetic nurse practitioner in the chemo day unit had noticed that the gap between my last CT scan and it's interpretation with my oncologist was much longer than usual (6 weeks). She took pity on my state of doubt and ran through a rough summary of the results. 

Her summary was positive as she was able to confirm that all the lung tumours were still shrinking and that the larger brain tumour was stable.

This was the moment when my memory of close textual analysis twitched into action.

Certainly stable is not overtly threatening but a large tumour which has been shrinking but is now stable has stopped shrinking and might still be a problem.

Before I spread alarm and despondency I should jump a couple of weeks to that long awaited meeting with Dr Lord, the consultant oncologist.

As usual we looked at 2 sets of scans.

The lung, which at the end of last year resembled the Indonesian archipelago now resembles (and here my quest for geographical analogy stumbles. A group of much smaller and fewer islands?).

And as for that worrisome brain tumour? 

It turns out that "stable" in this instance means so small as to be hard to locate precisely. More calcified remnant than active tumour.

The side effects too are minimal at the moment, and I came away from that oncology meeting with the interesting news that longer eyelashes might also be a side effect of the glorious Afatinib. I don't know the practical implications of this yet. 

So the news really couldn't be much better, so good in fact that, while out delivering eggs last week, I twice (I hope only twice) announced myself as "back from the dead". Tasteless I know and rather premature but a symptom of how I am feeling at the moment.

Throughout this novel experience I have balanced my natural pessimism (which means only that I prefer nice surprises to unpleasant ones) with a consistent positivity and determination that I will keep my sense of humour as long as humanly possible.

As someone quite famous once said: this is not the end, nor even the beginning of the end, but it may be the end of the beginning. Hope has fledged although expectation is some way off.

Hello to Jason Isaacs

Well, it's been a while.

Before I start to talk about myself I need to reintroduce Elton. Elt to friends and family of whom I am proud to be one.
If I had started to draw up an identikit picture of a son in law it would have looked very like Elt. Loves craft beer, malt whisky and Nikki (although not in that order). He has a comprehensive toolkit and knows how to use it. He also has a comprehensive collection of the most appalling jokes and isn't afraid to use them.
I mention him not to say how much I admire him (although I do) or to make him blush (although he may) but to tell you about his fundraising efforts this year.
He has set himself the task of raising at least £1000 for Macmillan Cancer Support. To do this he is going to try to run 1000km in 2016. He is going to achieve this while holding down a full time job, fully enjoying his family life and helping his father in law to develope his beer and malt tasting skills.
I saw at first hand the wonderful work Macmillan do, and the great people that do the work, when dad was in his last illness.  They need all the support we can give.
I will share his link on Facebook when I post this there. I hope anyone else who shares the blog will also share the just giving link.

Anyway to me. An endlessly fascinating subject.
You may have noticed that I haven't added to this blog for weeks. This is partly because there is little news about my health and because my not terribly interesting normal life has taken up a huge amount of time this summer.
I had pictures taken at the end of July of my lungs and brain. I haven't had the full oncologist debriefing yet (Sept 15) but they show no tumour growth and shrinkage in most of them.

Apart from the tumours, which cause me very littlet trouble I have side effects from Afatinib. These are still there but well controlled by the small but well endowed collection of drugs and creams I take (mostly Imodium I confess).

For someone who can't work the egg business has taken up an indecent amount of my energy this summer. Finding holiday relief is always a little tricky but it is controllable. The rule that I try to stick to is one at a time. This doesn't allow for the possibility of a driver injuring himself while a colleague is on holiday. This of course is what happened. Graham gets his plaster off on Monday and we hope will be able to resume duties in a week or two.

And my holiday is nigh. A few days on Skye with a weather permitting  boat ride to St Kilda (the rocky outcrop in the North Atlantic, not the suburb of Melbourne, Australia.
St Kilda is just about Clare's favourite place on the planet but I have never been. Really looking forward to it.

Live long and prosper

There's still a light at the end of the tunnel.

Quite a bit has happened but nothing that threatens my hope.
There was a moment when we did honestly think that light was a bloody big train. But it turned out to be work related and faded long before it got to us revealing that glorious light still shining.

There has been another scan. I am not a connoisseur of CT scans but to me this one seemed unusual. I was led out of the hospital and into a well appointed artic trailer by a guy from the north of England. Not I hasten to add a Geordie, the mistake I made, but from Sunderland. I guess the former can easily be recognised by their lack of Premier league football next season.
Such is the demand for CT scanning at present that Ninewells is bringing in a Larry and radiographers at £3000 per day to keep up with the backlog.

Anyway, despite being privately supplied, both the scan and its pictures went well. The tumours are still shrinking if not quite so quickly.
I was sent away for another 3 months, feeling fine and with growing hope.

I met a friend at a bus stop in St Andrews a few days ago. He broke the news that his wife had been diagnosed with a different form of lung cancer, had had an operation to remove half a lung and was now having chemo (or radio) therapy. The comment he made that made me think was that they had had a similar initial appointment with an oncologist as Clare and I. They had been given quite a lot of information about likely survival including the statistic that their cancer had a likely  5 year survival rate of 30%.
We had nothing like this which made me curious. I have studiously avoided such statistics but this meeting led me to look up my non-small cell stage 4 illness on Google.
I rather regret doing it and I quite understand why we didn't get the numbers chat. The figure for my illness at 5 years was 1%
I hasten to add, before I am accused of spreading alarm and despondency throughout the realm, that these figures don't include the effect that Afatinib has had. I mention this only to remind myself that the tumour generator I am harbouring was a pure bastard and that I was very fortunate to present myself to the NHS after this brilliant new drug became available.
It also reminds me not to turn hope too quickly to expectation and how much I have to thank the NHS for.
In the meantime there is a party to look forward to. The 21/60 which will jointly celebrate my 60th and Ben's 21st (see what we did there?). Our closest friends and family will eat, drink and dance the night away. Moderation may be postponed for a few hours.
Slainte