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

Just another Thursday: An interval. With tumbleweed

Just another Thursday: An interval. With tumbleweed: It is surprisingly easy to forget you are ill. Well at least it is easy if you have as few symptoms as I have. The good news is that for ...

An interval. With tumbleweed

It is surprisingly easy to forget you are ill. Well at least it is easy if you have as few symptoms as I have.

The good news is that for the last couple of weeks my side effects have receded. My visits to the lavvy are much less eventful; in fact I worry as much about visiting too rarely as I worry about earth shittering events. Even the rash is healing under the tender ministrations of Clare and the Diprobase cream she rubs into my spotty bits every evening. The bottles are not an elegant addition to our dressing table, but then again neither is the array of pills which festoon the bookshelves next to my bed. Adapt and survive so they say.

Anyway the pills are balanced by one of my most treasured possessions. Treasured both because of what it contains and for who it came from. 

It is an as yet unopened bottle of Port Ellen malt. There is a bit of controversy in the family whether this sort of whisky should be sipped or kept as an investment. I come down on the sipping side, and I know who I hope to sip it with.

So, I was talking about the progress of my medication. All good, as I said, but there is a vein of pessimism that runs though me, the thought that every silver lining must have a cloud; the light that I see at the end of this dark tunnel I find myself in is probably the 11.15 to Edinburgh Waverley. Thus the thought lurks at the back of my mind that the lack of side effects probably means that dear, dear Afatinib has stopped working altogether.

I hasten to add that nothing but my innate pessimism supports these thoughts. Anyway my latest CT scan is arranged for 29th April and within a couple of weeks of that date I will have another meeting with my Oncologist and a fuller idea of what the next few months have in store for the tumour rich Peddie corpus.

There is of course a party coming up. Obviously the coincidence that Ben would be 21 a couple of weeks after I turned 60 was planned for from the very beginning (NOT). Ben has been thinking about and planning for his party for round about 2 years. We had a shed at Kilduncan chosen and had even started to clear it out for the celebration when THURSDAY happened. 

This is the time for a confession. Ben had planned a slightly larger party but as soon as we heard about my diagnosis he instantly agreed to the joint party, but sacrificed almost half of the friends he had hoped to invite. (perhaps a poor choice of word, clearly the sacrifice didn't include ritual slaughter on a graven altar, merely a reduction of the number of names on a list). If you are one of those friends please accept my gratitude. I will drink to you at the party, quite possibly more than once.

There is another thorny issue concerning the party.

Presents. 

When I think about what I want for my birthday I immediately slip back to early November when my hopes and expectations so suddenly changed. It seemed all too possible that I wouldn't make it to 60. To be able to celebrate in my brothers shed on the farm my father bought and a few yards from the house where my grandparents lived is the greatest gift I have ever had.

And I owe it to all of you. Without the NHS my fears might have been realised and everyone who has ever paid tax in this country or who has ever taken a job where you didn't earn enough to pay tax has contributed to my treatment. The chance to spend a happy evening with my closest friends and to meet Ben's friends is more than enough for me.

Ben's case is slightly different. If you ask him what he wants he may well gibber something about giving money to a cause which I will come up with.  On this occasion (and only this occasion) please ignore him.

He is about to be 21 and one of the pleasures of that milestone is opening the presents that your friends have chosen. Don't deprive him of this. Please give him exactly what you would have done, no more and no less.

(Oh, and if I make it to 70 I will expect handsome gifts.)

Sensible warm motion

Somewhere in the large amount I have read over the last half century I recall that someone (and it may well have been George Eliot in Middlemarch; her writings are essentially distilled wisdom) wrote that if you correspond every day then there is always plenty to say but if you leave your writing for a couple of months then there is too little to say.
Well I have left this for a little over 3 weeks so lets hope my muse hasn't buggered off to the pub without me.

You will be as relieved as I am to hear that my afatinib has been restored to me. After the dramatic effect it had in its first 2 months of service i would hate to contemplate life without it. Although I should warn you that this is no recreational drug. Well at least not unless anyone particularly enjoys the feeling of arse on porcelain and the sensation of the world falling out of your bottom, fast.
I watched a documentary on Brewdog last night. Part of their mission statement is 'we blow stuff up'. That is the essence of my visits to the smallest room at present. Not entirely fun, but a long long way from miserable.
My other symptom (apart from shrinking tumours, as I keep reminding myself) is dry and intermittently itchy skin. This has its compensations. Each evening as we retire Clare rubs cream into the itchiest parts of my anatomy. Back, chest and head; before any smutty thoughts take root.

 Quite a large proportion of my thought are in Chamberlain St, St Andrews tonight.
Ben has decided to stand for the sabbatical post of Athletic Union President. For the past week he has been campaigning hard and as I type the on-line  voting process is under way. Unfortunately for Ben what should have been one of the greatest weeks of his life has been spoilt by a persistent earache. By this time tomorrow he will know how many have voted for him. Hopefully the earache will subside in time for him to really make his mark as he spends his first year in elected office.
I should mention that he is the only candidate. But a large vote will give his presidency added legitimacy.
I am rather in awe of his self assuredness and focus. Pride doesn't really do justice to my feelings, although he didn't have to get elected to make me feel that way, and neither do Nikki and James. My pride is in their essence not in their achievements.

As you may notice it has been a few days since I have visited my blog. In the few days since I wrote the beginning of this Ben has been so ill with tonsilitis that he came home and slept in his old bed for a couple of nights. And Scotland won a resounding victory over France at Murrayfield. 

That put me to thinking about the future.
Pleasant though it is to contemplate past campaigns (and if you are reading this on 17th March which, from where am sitting, is tomorrow; it will be 26 years precisely since Scotland last won a 5 nations Grand Slam) it is next Saturday's match against Ireland where all the interest lies.

This short contemplation of the past and future in rugby allows me to slip in a sweeping generalisation (sorry).
The past is essentially just stories. Some of them make us wince, others give a warm glow. We can choose to learn from them, or not.
The future is life. All our plans and expectations are there. Enjoy. I intend to. (I confess that as I type this I am watching last Sundays rugby against France. Consistency never my strong point)

Life is a roller coaster

Nothing like starting to write with a hoary old cliche. Except that in this case the cliche fits pretty well.
Clare and I came home last Thursday with great news. We had a little fizz to celebrate. Then on Friday the arrival of our grandkids and their parents led to more celebration, quite a lot more in fact.

What exactly we were celebrating is open to question. My good news; possibly, but we do tend to celebrate quite effectively every time they come down from their northern neuk. Let's call it the drunkenness of things being various. (No, you are right not my phrase but one long loved and stolen from a great writer, look it up, the poem is worth reading)
After a slight lull on Saturday with the best behaved grandchildren imaginable the parents returned and there was a wee celebrate on Sunday night. Then somehow on Monday night a bottle of wine evaporated while in the care of Clare and I.
Not exceptional by our standards but in retrospect not the ideal preparation for my blood test on Tuesday morning.

Anyway, to Ninewells this afternoon clutching some dubious liver function numbers from the aforementioned blood test. I knew when I arrived that the figures were not good, an impression confirmed when another blood sample was taken and we were sent away while it was tested.
The results of the second sample were better than the first, but not good enough for the doctor in charge to allow me to carry on with my magic pills.

So I am home with no Afatinib and the prospect of no alcohol till my liver feels a little better.
Another appointment and blood test on Friday next week will hopefully see my Afatinib restored. Alcohol, genuinely in moderation will be resumed sometime after that.

Strangely it is easier to give up the bevvy when the choice boils down to drinking or living!

Short one tonight. Today's news has left me grumpy, but not down hearted. I still follow a strict policy of avoiding euphoria when I get good news and despondency after bad. The tumours are still a lot smaller than they were 2 months ago. And only a week off.

And still time for Scotland to finish the 6 nations with 3 wins!

Good time to say thank you

This episode has been written in 2 instalments. The first was written shortly after I was CT scanned for the second time. I have been on my present drug regime since christmas day. This second scan was to check whether Afatinib was having any effect on my consignment of tumours. It was a tense week, bowel problems may not have been just a side effect of the drug.
I will start bang up to date. With the news, the good news, in fact with the fucking magically good news.
On Tuesday evening Clare and I were back at Ninewells for another meeting with Dr Lord, my oncologist. It was late in the afternoon, perhaps her last appointment of the day. Just as last time she had the pictures on her computer screen. This time there were 2 sets of slides for comparison purposes; November and February.
My hopes, well apart from the vain hope that i had flung myself into the fireplace and been instantaneously transported via the flue network to Madame Pomfrey at Hogwarts. In this particular dream she taps me gently on head, chest (and although I haven't yet mentioned the hole in the bone in my upper arm) and shoulder. She mutters the ancient incantation carcinoma fucoffita; I confess the profanity surprised me too. In this tale all trace of non-small cell carcinoma has vanished.
Back to my real life hopes. All I really hoped for was that the tumours would have stopped growing, that Dr Lord would take this small effect, and my blooming good health as a good enough reason to carry on with the drug for another couple of months to give it more chance to take effect.

Well the truth is so much better than that. Not quite Hogwarts, but all the tumours have shrunk, many by 50% some by more, even my arm bone (yes, the one connected to my shoulder bone) now looks as if it is actively healing.

What does this mean, I hear you call?

Buggered if I know. This is a brand new drug. Had I developed this cancer 5 years ago I might have been well one my way to a spot of pushing up of daisies. 
In trials its effects have been variable. Occasionally it has failed to work, then on other patients it has started promisingly then the effect has petered out.

None of that matters. What is important is that the initial effects have been spectacular. I am feeling very fit, my side effects are negligible and my optimism undimmed. 

National Cancer day was on 4th February and is particularly important to me this year.

I was assaulted by a cancer that sneaked in without symptoms and was found by accident as my head was CT scanned looking for evidence of a mini stroke. This is unusual. Most cancers arrive with changes or symptoms. If you find those early chances of recovery or remission are much higher. There is a lot you can do.
Feel your bollocks, your breasts (it may be more fun examining each others but remember in this case you are looking for lumps or other changes).
There are several screening services. One in particular that I have been ignoring for several years are these little cards the NHS sends so we can smear them with shit which can be tested for bowel cancer. Don't do as I have done, SMEAR AND SEND BACK, this test could save our lives.

As well as our vigilance money is key to fighting cancer.

All of us can look for ways to help to fund cancer research bit by bit scientists are learning the secrets which will help to cure the many cancers which attack us.
MacMillan cancer support does wonderful work in helping those who are losing the fight against these horrible diseases. My mum and dad had their last months eased by the care and love given by Macmillan nurses. These wonderful people give up their time for far too little money to help those fighting cancer. Our money is always needed here and will never being wasted.

But if, like me, you find yourself sitting in an anonymous doctor's office on some random Thursday afternoon and the clocks stop as you hear a young doctor utter the woeful word 
'tumour' perhaps qualified with the strange adjective 'metastasising' then you don't need research, nor are you quite ready for palliative care.
What you need is the help of the cleverest, most dedicated doctors, nurses, porters and radiographers, all the skills that go to make up a modern health service.
The men and women who will comfort your confusion and grief at this horrifically abnormal diagnosis and in their skill and dedication try to find you a way through.
The other thing you don't want to be told is that there is an eyewateringly expensive drug which might just save your life but then having to go to your insurance company and ask them to fund it. Be assured they will go through their policy and your history looking for loopholes; for your pre-existing conditions, at the fine print in your policy anything that will allow them to step aside and send you to the least cost possibly palliative option.

If you need me to tell you how important the NHS is then you are probably in the wrong blog. 

So my thanks are due not only to those of you who have read this blog and offered personal support. I also thank the NHS staff, both those I have met and those who labour behind the scenes to keep our medical services going. Lastly and perhaps most of all I thank all who have helped to pay for my eyewateringly expensive drug. That includes pretty much everyone in the British tax system. Some better off than me, many more much worse off. My wish is that I live long enough so that my taxes contribute to your treatment.

Hopes and expectation

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.

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.