The Moon on a Stick

UnknownThe problem is not the radiotherapy. Or even the chemotherapy. It’s the Tour de France.

I’m a keen cyclist. Obviously. And I’m also a big fan of watching cycling. Particularly the Tour de France. But as big a fan as I am, I suspect the organisers of that wonderful 26 day sporting spectacular won’t be too keen to shift the Grand Départ a few days backwards so it fits more conveniently with my cancer treatment.

Defeated? Not a bit of it.

Let’s start with two very important bits of business. First, we jump to last summer and to before my brain tumour became malignant.

Back then, the future seems to stretch into the far off distance. It was like rounding a corner expecting to pull up to car part at the weather station at the top of Mt Ventoux, only to see there are miles and miles of twists and turns of climbing left to go. And I liked it that way.

So my brother, my Dad and I came up with a plan. It’s Dad’s 70th birthday this year and my brother has bought his first road bike, hoping to build up some better fitness so we can ride bigger distances when we get together.

What better way to mark the year, we thought, than to head off on a Burrows-on-Tour trip to watch the first stages of the Tour de France, as it passes around Normandy this July?

Dad will drive the battle bus – a full on mobile home, with a springy chair and cup holder and everything – and in between he’ll eat French cheese, drink good coffee and watch the cycling fans go by as they wait around for the Tour to pass through. My brother and I, on the other hand, will put in some time on the bike, uniting with the Big Man for when the peloton goes through, or to watch the end of a stage.

Bliss.

From the moment the idea occurred, I desperately, desperately wanted to do it. Not just for the Tour. Not just for the cycling. But because it will be something special. Perhaps, given my own and my Dad’s health, it may be something something we may not have a chance to do again.

So, we booked the motorhome. I bought the road maps. Dad had T-shirts made.

OK. Significant point of business number two. Just under a year year on and we have now discovered that my brain tumour has most likely turned malignant. As per my writing last week, my new neurosurgeon wants to operate to remove the malignancy in my brain.

He referred my MRI images to my former London team, who came back with an unequivocal opinion – the same opinion they have offered me for the last four years, since diagnosis – my tumour is in such a position that it would be too dangerous for surgery.

After discussing carefully with my wife, friends and family, last week we finally made a decision. I am not going to have the operation.

Not for a second do I doubt the neurosurgeon’s abilities. His professionalism, his experience and expertise is all one could wish for. If my London surgeons had backed his advice, then there would have been not doubt.

But while surgical opinion rested in the balance, it was up to me to weigh the risks of surgery: permanent or temporary damage to my speech and language, to my motor skills, perhaps even death; against my health at my specific stage of life right now: a new baby, two more young children to care for, not to mention work, money and more.

It is not a risk I was willing to take. And it is one the neurosurgeon respected and understood. I suspect it was one he already knew was coming.

Within 15 minutes, I had been passed from him to an oncologist to begin planning my treatment. It will be the radiotherapy and chemotherapy I would have needed to have, even if I had opted for surgery.

Six weeks of radical radiotherapy, every day except weekends. Then a four to six week recovery break. Then around 36 weeks of chemotherapy, depending on how my body responds.

My oncologist wants to get me started as soon as possible. Like, within the month.

Again, I um, and ah and doubt and filibuster. Does it have to begin now? Could we delay until after the summer? Could we not have another MRI in a month or two’s time, and see how it looks?

(Can’t we just wait until after the Burrows-on-Tour trip at the start of July?)

But the oncologist is clear.

She is my doctor and she is strongly advising me to start treatment soon as possible. The tumour has shown its hand. The malignancy has grown significantly since my MRI in November. And if it carries on growing at that rate, putting pressure on the brain and infiltrating healthy cells, then any damage it does will be irreversible.

And at that, she has me.

Less than half-an-hour before, I’d turned down brain surgery because of any damage it might leave. I couldn’t now flip that argument on its head and say: “well, it might not”.

The Tour is off. I need to have my radiotherapy mask made as soon as possible (more on that in a later blog). In a matter of a few more weeks, I’ll be ready to start week-one of radiotherapy treatment. We’ll be on our way.

But as serious as the oncologist is about treating now and the possible side effects radiotherapy and chemotherapy are likely to bring, she’s extremely positive about the potential impact the treatment will offer.

We all know that my tumour can’t be cured, but there’s a very good chance that the treatment will kick it into the very long grass. It could then sit there for years and years, doing not much at all.

And when it does start misbehaving again, we could do more chemo. And every year I survive, there will be new developments, new cancer research, new drugs, new techniques, new machines.

My wife and I leave the hospital feeling good about the decisions we’ve made, and we head for our usual coffee for a debrief. But there’s something niggling at the back of my mind. And then I get what it is.

I pull out my phone and scroll to the calendar. I grab a pen and a serviette. I scribble down the dates of the weeks and months to come, trying to work out when treatment is likely to be.

It’s tight. But it could be possible. Couldn’t it? If I have my first radiotherapy session within four weeks of today, the sums just about add up.

Six weeks of radiotherapy, then a recovery break, the oncologist had said. A recovery break during which, albeit scaled down in terms of ambition and quantity of cycling, we could still go on our Tour.

I call my oncology nurse and ask about the possibility. If I came in tomorrow to have my radiotherapy mask made, could we make the timescale work?

She thinks it might and she promises to do what she can. We made an appointment for the mask fitting, and it is from the waiting room for the process that I now write the draft of this blog.

I know: I want the moon on a stick.

I want to be offered surgery. I want to ask for a second opinion. I want to turn it down. Then I want to be offered oncology. But I want it after the summer, so I can go on a trip. And then, when that’s not possible, I want it right now.

I am the Veruca Salt of Brain Tumours.

A few hours later, I have come to my senses. I speak to my brother about the trip, and he’s incredulous that the Tour was the first thing on my mind when I’d just been told I’ll be starting cancer treatment within weeks.

I realise the listing of the dates, the frantic phone call to the oncology nurse, the idea that I can shift around the timetables hard-working, super-busy NHS staff so I can make a cycling trip, is not only impolite and selfish. It’s disrespectful. As a Northern Irish friend correctly scolded me later: I should wise up and catch myself on.

I guess my reaction was a copying mechanism. It was me displacing my own emotions about what I’d been told that day towards constructing a future – any future – that I could be in control of.

I’m calmer now. I’m comfortable. And bit by bit my wife and I, our family and friends, are absorbing the implications of year to come. It won’t be nice, but the general outlook for afterwards is good. It’s something to hold on to.

Sure, getting the timing right for the Tour would have been a huge bonus. But it’s far from the most important thing on the horizon just now.