I was struggling with this one, my friends. I had several versions in mind: there was the one in which I did the update/introduction for newcomers to the site and explain the eccentricity of the blog (in which, Oscar style, I thanked you all, because I really couldn’t, and wouldn’t, have done it without you ... I tried to spare your blushes).
There was the one where I explain how I try to draw together whatever shreds of humour I can (but in which I don’t apologise at all for seeming to make light of the situation.)
But events, dear friends, events…
Do you mind a little outpouring today, a little more in the way of revealing hitherto hidden weaknesses? (Wise Old Cynic, if you are reading this, stop now and get back to work!)
It is fifteenth months to the day since Our Hero was issued the prognosis; that ‘If-you-are-lucky-we-can-make-it- to-double-figures’ prognosis.
And we have being doing well.
We have battled through snow, both this year and last, to various treatments, hundreds of miles apart.
Our Hero has suffered six cycles of chemotherapy. He has taken himself off to have photodynamic therapy. He injects himself with Mistletoe. He sips, with difficulty, but dogged determination, various tinctures that arrive in the mail from all corners of the planet.
I have juiced and blended and made enough soup (with vibes) to re-float the Titanic.
And you know how much meddling and cajoling I have been doing when it comes to the medical profession.
I am quite good at that sort of thing.
But here is the big confession: I am really not good at dealing with pain and suffering.
Let’s face it, someone who ends up rescuing orphaned mice and hand-rearing them on tahini, who tries very hard not to vacuum up spiders, who struggles not to weep when she encounters the daily road-kill on the way to work is not very well geared for dealing with the suffering of those she loves the most.
Empathy may be the driver of compassionate action, but empathy overdrive can turn you into a dysfunctional wreck, unless you are very strong indeed.
And I have had good reason to think over the last day or so that I am very close to being reduced to complete emotional rubble. The last fifteen months have been putting a strain on the inner resources.
It was the cluster headaches that brought all this into focus.
Cluster headaches are not like migraines where the sufferer retires, quietly, to a darkened room. No, the cluster headache sufferer paces, beats their head with their fist, or sometimes, literally, against walls.
The pain is, apparently, like no other pain. It is, sufferers say, like an ice-pick being hammered into the eye. Women sufferers (who are very rare) say it is worse than childbirth. Sometimes it gets so much that ‘clusterheads,’ as they call themselves, just put an end to it all – the pain is too much to endure. According to one rather odd statistic only 62 in 100,000 people have cluster headaches.
And, of course, it is very difficult to treat.
Our Hero, three or four days ago, was just entering into a cluster headache cycle and, for him, this bastard of all the bastard headaches can happen for up to eight times a day for about five weeks.
But he is not up to much pacing any more, or thrashing around, or hammering his head.
A concentrated rocking is all he can conjure – a careful rocking because of all the other pains.
Of course, witnessing this, I am in empathy overdrive - which is not a good thing at all. The other pains have been under reasonable control and are mostly hidden and so I can cope. But, quite frankly, this added pain is too, too much for both of us. And I really wonder if I am up to the task that may lie ahead.
However, there is one little nugget of hope in all this – we think Our Hero has a very good GP. Once he had ruled out metastases in the brain (something our poor Hero hadn’t even considered) it is not long before some oxygen cylinders arrive.
Pure oxygen can ‘abort’ cluster headache attacks in 78% of sufferers (don’t I like my statistics!) and O2 worked on one attack almost miraculously, although less well on the next. We will see what tomorrow brings.
However, I think we have a strong ally in the GP and, I have to say, I feel a great deal stronger knowing this.
Of course, Our Hero is an interesting case: to meet any patient with advanced oesophageal cancer with liver mets who is still standing fifteen months after the dread prognosis is unusual; to meet one who also has cluster headaches is only likely to happen once in a medical career.
Now here’s a thought: if medics were like twitchers and flocked to view rare medical cases, Cold Comfort Cottage would now be surrounded by the white coats demanding cups of tea and then the ancient plumbing would really be under strain …
Or I could always offer them oxygen instead of tea. That would be a blast.
