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Like Jonathan Richman, I’m in love with the modern world. I may not be driving around Massachusetts these days, but I’ve got my radio on. Only it’s radiotherapy. I started last Monday. Every day for two weeks they clamp my head into my own personal mask and put my brain in a microwave. Or the equivalent of, let’s not quibble over frequencies. Maybe I can smell burning. It’s actually not at all painful but it leaves me a bit more dizzy than usual, and these days I am Normal Dizzy the great jazz musician at the best of times.

So, slow me down. Let me build a garden which is a haven of peace and quiet beauty. And live in it a life full of respair where despair is repaired by hope, or at least calm acceptance.

But please don’t confuse me for some apolitical moron on a path to personal discovery and heightened spirituality. I still spit with indignation at mindless repeats of old history, where right-wing bigots use the misfortunes of “destitute foreigners” to advance their own interests. I snort with incredulity that anyone can believe that the Tory agenda for the NHS does not involve causing it irreparable harm. I laugh at ex-Army types who talk about “terrorist sympathizers” but clearly have never had a serious conversation with someone jailed for planting a bomb.

Maybe I’m just more aware of the passage of time. The average human lifespan in the UK is 972 months and we sleep for 324 of those. My current personal target is to have stayed alive for 720 months. Maybe I’m aware that a high probability of early mortality was once common with World War 1, Spanish flu, etc. Maybe I see the things around me with sharper acuity.

My English teacher at the Irish seminarian school was straight out of Chaucer – a short, billiard ball of a man rigged out as a priest in his black robes. He was an 8 ball. Round glasses in a moon face on a round head attached to his round body. ‘Cream buns’ was his nickname. If we only had a bit more culture in us we could have called him ‘Skoleboller’ (‘school buns’), which are Norwegian cream buns.

He tried as teachers will do to instill some love of literature in the unwashed sons of farmers and small town solicitors. “Boys, shur ye’ll like this one, he was only a youngfella like yersels”. He was talking about Francis Ledwidge (1887–1917). The centenary of his death will be on 31 July. Ledwidge was a war poet. He survived the battle of Arras (where the English poet Edward Thomas was killed), only to die at the next one in Ypres.

The poem that the portly priest was praising prolifically is called June. It begins:

Broom out the floor now, lay the fender by,
And plant this bee-sucked bough of woodbine there,
And let the window down.

I didn’t have much time for the pastoral in those days, but it was so easy to visualise that country cottage that I was a little bit impressed. A woodbine is the folk term for honeysuckle, in case you didn’t know. The Victorians didn’t like young girls bringing honeysuckle into the house because the smell of the flowers was believed to cause erotic dreams.

You could maybe pair it with a little bit of Seamus Heaney:

Were we not made for summer, shade and coolness
And gazing through an open door at sunlight?
For paradise lost? Is that what I was taught?

Even a shower of rain is good in June. Petrichor is the name for the earthy smell made when rain falls on dry soil. Sara Teasdale (1884-1933) wrote about it:

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

I try to see and hear things better now. Swifts that scythe the summer sky, madly and constantly screaming as they fly. The chuckle-cackle cry of a passing jackdaw. The mutually-reassuring chirps of long-tailed tits to the rest of their family group. A good day is spotting a Silver-washed Fritillary butterfly in the garden (and listening to Boris Johnson make a twit of himself on live radio).

Small pleasures.

My MRI scan happened on Monday at 07:30. It was no problem making the early slot as I tend to wake these days not later than 4am. Probably some drug side effects. In this, the heart of summer, it isn’t any burden to shake free the tangle of night roots and just enjoy the calm. As the surrealist painter and author Leonora Carrington says: “Dawn is the time when nothing breathes, the hour of silence. Everything is transfixed, only the light moves.

Later the same day I had the results via another appointment with my OncDoc. There are two clearly-visible tumours at the back of the brain, one on either side. I’d guess the one on the left is around 3-4cm, and the other is around 2-3cm. That would put them on the larger side of the usual scale.

Two lesions far apart rules out a resection (surgery) and is less suitable for the ‘pinpoint’ or high-dose stereotactic radiotherapy method. It does leave the way clear for what is called whole-brain radiotherapy (WBRT). That will be the one for me. It has the extra advantage that it will treat the bits that are not yet visible, as well as the two above.

By the way, there’s a very high probability I will lose all my hair because of this. But as we both remarked in the car on the way home, the decision is a no-brainer. Sorry, I’ll stop it at that.

I have to get a personalised head mould made for me so I can stay perfectly still. That happens this week so I could be starting treatment as early as next week. The sessions are typical radiotherapy – daily for two weeks. Each session probably consisting of 5-10 minutes of zapping, 45 minutes of preparation and setup.

This gives me an excellent opportunity to play my CancerBingo game, in which I get the chance to include stock quotes that just belong in a Cancer blog. Today seems right for the ‘famous’ Anton Chekhov quote: “Any idiot can face a crisis, it’s the day to day living that wears you out.” Actually, it’s not his quote at all. It comes from a Bing Crosby 1954 film called “The Country Girl”, which in turn was based on a play written by Clifford Odets.

The title of this blog I borrowed from my current favourite Aldous Harding, a New Zealand folk singer with more than a little of the Gothic about her. One of her other songs mentions “Baudelaire in the afternoon.” I like me a bit of Les Fleurs du Mal. He did say: “You have to be always drunk. That’s all there is to it—it’s the only way. So as not to feel the horrible burden of time that breaks your back and bends you to the earth, you have to be continually drunk. But on what? Wine, poetry or virtue, as you wish. But be drunk.

Time for a gin and tonic.

 

It looks like I got what I wanted.

Nearly six months of chemo has taken the tumour down from 3.9 cm to 2.2 cm. That was the original size when it was just an ‘object of interest’ before it started to grow. On Friday I have an appointment for radiotherapy staging (they scan, they locate, they tattoo the target). They told me it would take around two weeks to arrange the radio so in the meantime would I care for another round of chemo & cetux the day after (my normal day). How could I refuse? So here I am with chemo cycle 9 and cetux cycle 7 swilling around in me.

I think they wanted to carry on with chemo but I expressed the preference for radio. It won’t be radiofrequency ablation because the tumour is too large. It will be ‘traditional’ blasts of x-rays at the tumour. If I heard right, twelve consecutive days (more or less) with a quick-ish zap each day. These smaller doses are called fractions. The fraction either destroys the DNA directly in the affected cells or it creates charged particles called free radicals that damage the DNA. I like to think of these free radicals as my liberation army. Come on, you Sandinistas 🙂

They still won’t tick the Curative box. It’s still Palliative for them. Prolong my life, etc.

But if I stop the chemo now, in the same number of months this tumour will return to its original size. I do not under-estimate the aggressive and severe nature of this metastasis, and I need to fight back with a stronger weapon. Which is where the radio comes in.

Radio doesn’t hurt when it is administered. But afterwards, the burnt or destroyed tissue can hurt plenty. There is also the risk of collateral damage to healthy tissue nearby, and the location is a node on the tube/pipe that leads into the lung mass. It’s a thin and complicated structure with lots of  pulmonary veins and arteries.

If you’re interested, it’s #10 on this map diagram: http://www.radiologyassistant.nl/en/p4646f1278c26f/mediastinum-lymph-node-map.html

But I feel the risk is calculated and correct. As Sean O’Faolain once said about Daniel O’Connell: “He imagined the future and the road appeared”.

So profound. Fuck it, let’s have another song:

 

Final review meeting with Mr Wilson today. He told me it had all gone as well as could be and that I was now at Base Camp. He didn’t mention the forthcoming assault on the mountain but we all knew that.

The radiotherapy machines have been erratically failing and on Friday I got 2 out of my 3 zaps in Lab 7 before it ground to a halt. Then a wait, before I got zap #3 in Lab 8. A bead of sweat dropped in case zaps #4 and #5 were about to come, but they didn’t. I give you Underworld’s “Beautiful Burnout” in grateful acknowledgement of this fact.

There is one more radiotherapy session on Monday and I finish the chemo treatments around the same time. Then we wait…

To be honest, there isn’t all that much wrong with me as I finish the treatments. I had a bit of nausea (eat ginger and/or fruit pastilles) and some tiredness. I got the symptoms of prostrate cancer as a free bonus and my arse feels like a good looking rent boy’s after a sailors’ homecoming weekend but wtf, eh?

My big issue was whether they’d do this combined bowel/liver operation (it’s called a “simultaneous resection” – easy to rap with that one). I did some google’ing to make sure that I actually wanted this, and the conclusion is that there are fewer overall complication rates and faster recovery. There is the known risk that delayed liver surgery may allow new metastases to develop. To be brutally frank the #1 benefit is that, in say a year’s time or so, I will be ready again for a second liver resection after that miniscule dot develops into something. There’s no hiding from this.

I was scared they wouldn’t raise my case at their team meetings so I had a letter written and ready to handover, which I did. I think it may sway it in favour of the simultaneous resection. If it happens, it means that the operation circa August 27th or 28th will be a 7-10 hour marathon, with a handover mid-way through to the hepatic team. They’ll cut a new incision and I’ll have two lovely big scars, one on my belly and one on my chest. I’ll have a couple of happy days on the best drugs the NHS can offer, then they’ll make me walk to the corner of the ward to get my fix (or something) a couple of times every day.

I passed some time waiting for radio looking at the hospital admission form I have to bring with me. It has a question about religion – Atheist I guess – and another one asking if I want the Chaplin to visit while I am in hospital? Wonder what sort of session we’d have if I write “atheist” and ticked yes to a visit? Then get out an egg timer and challenge ’em to a convert-the-heathen knockdown? It’s good to see that the prospect of meeting the sky pilot doesn’t make me drop to my knees and/or call in the god botherers. It’s all a big lie, people.

Tell it like it is, Bonnie ‘Prince’ Billy:

Some say I’ve got devil
Some say I got angel
But I’m just this girl in trouble
I don’t think I’m in danger
No I’m not in danger
No, I know I’m not in danger

– (Some Say) I Got Devil

But you never do know though, do you though, do you? Hope Nick Cave is right.

First radiotherapy session of the 2nd week at 8.30am on a Monday morning. Still extremely lucky not to have any nasty side effects from either it or chemo. Maybe a little tired, more irritable perhaps. Like when you rent a small car and pump the accelerator looking for a power surge that is just not there.

It looks like I have the energy to carry on working as normal, at least for now. I got a date for the surgery – August 26 is when I am admitted. That will be far more disruptive obviously. Now that the pre-surgery treatments are not the issue I’d been warned about, my focus is moving more to worrying about the Op and the aftermath.

Based on what I can tell, the drugs I’m on are for Stage C which means there is some lymph node affects. Not a big surprise when I consider where the image was on the CT scan.