Two for Joy

Although I have the utmost respect for scientists and all things scientific, my life choices are almost always decided in the heart, not the head, and this has generally served me well so far. But what if the choice relates to health and well being? What about when it comes down to life and death?

A little over a fortnight ago, after an entire weekend of talking through the options, Mags concluded that maybe six cycles of chemotherapy was enough. The constant fatigue, the increased regularity of low platelet counts, the pins and needles in her fingertips and a frightening episode of atrial fibrillation. All this at the halfway point. What shape would she be in after twelve cycles?

At the outset, the oncologist made clear that the regimen would be particularly ‘intense’, and if Mags could complete all twelve cycles, that would be great, but he’d be happy if she only managed six. On decision day, what we were looking for was a proven scientific reason to carry on. Complete the twelve and increase your chances of a good outcome by a certain percentage figure. That kind of thing. But the coldest fact of all was that Mags was in what one registrar called “an evidence-free zone”. Figures may be extrapolated from trials done with bowel cancer patients, but no such trial had been conducted for pancreatic cancer patients. All they could offer was an acknowledgement that bowel cancer patients receiving the same chemo cocktail did as well on six cycles as those who had twelve.

So the upshot is no more chemo for the foreseeable. But a few weeks to allow the body to recover and regain strength before a scan in mid-January.

As Mags sat with her back to our lounge window on the morning of that oh so important consultation, two magpies flew straight towards us, only swooping up to perch on the gutter (we’re on the first floor) at the very last second. In the absence of science, a line from an 18th century superstitious rhyme may be regarded by some as no credible substitute. But sometimes the heart says, “That’ll do. Hold on to that.” And we obey, gladly.

Affairs of the Heart

Once upon a time I took a keen interest in politics. But it’s amazing how a vision of building a better world for all can shrink so dramatically, it barely figures in your life anymore. I mean it’s still there to a point, like a tolerable stone in your shoe. One that occasionally causes you to break your stride and wiggle your toes, but never actually makes stop and shake out your footwear. These days our bigger picture is so crammed full of detail, the irrelevant stuff has been pushed out to the edges where it sets solid to form a frame of sorts.

Mags is halfway through her chemo, and has been tolerating the toxicity of the treatment reasonably well. But just over a week ago she collapsed twice. A GP arranged an appointment at the surgery for an ECG. I know the qualities of her heart better than anyone, but the medics are only concerned with pulses and physical functionality. To each his own.

We were all set for a quick check up, then home for a cuppa, but it was not to be. “There’s something a bit funny going on here,” said the doctor, holding a print of beats and rhythms out in front of him. “We have to get you straight to A&E. I’ve called an ambulance.”

So, a bumpy ride to hospital, with blue lights and sirens, and a six hour stay in the resuscitation room until things had settled down, courtesy of doctors, consultants and two magic pills.

The latest cycle of chemo was held off due to a low platelet count, so everything is up in the air at the moment, as it is with so much that’s going on in the wider world. Local and global uncertainty. At least Mags now has firm appointments with people who specialise in fixing things. An A&E doctor told us that cardiologists, rather like oncologists, are renowned for having a singular focus.

It’s a comfort to know that Mags is in good hands, even though the nation’s heart is palpitating and various ideological malignancies continue to spread with alarming aggression.

Wasps and Dragonflies

The title of this post may well have become the working title of a longer and more detailed account of our lives since Mags’ diagnosis. Wasps, because of their frantic efforts at our window this summer, trying to get to the other side of something they could feel but couldn’t see. Dragonflies because often when Mags has been sleeping I’ve watched them in numbers, sprinting and glinting with apparent purpose, before drifting and floating on seemingly random trajectories. Looks like I’ve discovered my inner insect, an undeniable fragility  that manifests in the shadow of that which has the potential to squash me.

It’s doubtful that the account will ever get written, not least because I would always be conscious of the story titling towards me, how I’ve been affected. And that’s not the way it is, by a long way. It’s about us, two ordinary people like countless others who have had their entire existence turned upside down by cancer. It’s about vulnerability. That which is shared and that which is experienced individually. There’s a wonderful piece I read just recently by David Whyte. Well worth a look.

I want to avoid telling tales of what the oncologist describes as “bumps in the road”. They are already well documented in countless personal stories. The various online forums are littered with them, unsurprisingly. People posting in the hope of reassurance and, in turn, readers reassured by accounts that make them feel healthy by comparison. I’ve left all forums now because I found them, overall, to be depressing. Always the threat of something weighty that might flatten me in an instant, activating my inner insect once more.

So, before I buzz off, here are some positives. Mags doesn’t need to see the dietician any longer, her surgeon is happy with his handiwork and doesn’t want to see her until June 2020, and we don’t need to monitor blood sugar levels anymore. Mags has a lovely counsellor via a local cancer support charity, and we had a very long meeting with our wonderfully bubbly GP this week, that ended with something rarely prescribed: a big hug!

Please Note

When I was much younger, there was fire in my belly and words in my head, and I had half an idea I could write for a living. The recurring advice from established authors and journalists was, “keep a diary”. In a letter I still have, from Jilly Cooper, the emphasis is very much placed on making notes. Sadly, I’m not a natural diarist or note-maker. Throughout eight years of various academic studies, I barely wrote a single word more than was necessary to get me a pass mark. As for remembering events from the past, I rely solely on my memory, although despite best efforts, my powers of recall can sometimes result in the original monochrome being remade in glorious Technicolor. On the flip side, traumatic episodes may be softened, even obscured.

I’ve had to sharpen up my record keeping act of late, though. Some things must be logged with pinpoint accuracy. You really can’t keep a cancer diary for someone in a half-hearted manner. Every symptom and side effect must be recorded ahead of the nurse-led review that comes two days before each new cycle of chemo. I have to practice words like Metoclopramide and Dexamethasone so that I can quote them with confidence. Missing an entry or omitting a detail is not an option. There’s too much at stake. This is heavy duty treatment, and the rapidly filling ‘sharps’ bucket in our utility room proves it. Amongst its contents are symbols of modern medical science and brutal reminders of less enlightened times – spent Baxter’s bottles, tubes, syringes and other prescribed paraphernalia.

In this neck of the woods we get by on a daily dose of pure, distilled, wishful thinking, and as strange as life is right now, thankfully, the view we have of the outside world is largely seen through the lens of our own bubble. Distortion is the new clarity.

There are moments of magic though. A neighbour phoned to let us know when the window cleaner is coming next. She went on to tell of a mother and two baby hedgehogs she’s been feeding each evening. Apparently, as darkness falls, the patch of grass where the spiky visitors take their food, is subtly lit by a solar powered light … in the form of a cow. Something worth noting down, I thought, because it made us smile.

Suddenly

That thin line that we all walk. You know, the one that requires balance and concentrated effort. The one that you lose your footing on from time to time, causing you to gasp and reach out for something that’ll save you from falling. The shifting, invisible division between good fortune and bad, happy and sad, genius and madness. The difference, all too often, between life and death.

I’ve neglected this blog all too often, for the lack of something interesting to say. But in recent weeks, I’ve had so much I wanted to say, but have been, until now, unable to type the words. My wife, Mags, was officially diagnosed with a life threatening condition on the 1st June. She underwent major surgery nine days later. A seven hour operation that only 15 in a 100 pancreatic cancer patients are offered. Only 9/100 actually undergo the full procedure. Despite the wonders of modern medical technology, CT scans don’t always show everything that’s lurking. A point put to us only minutes before Mags went to theatre. They have to be honest. Proof, if proof was needed, that the truth can and does hurt.

The operation was a success, and Mags is now in week eight of recovery. She’s eating well, and her energy levels are returning. We walked almost 2km yesterday. She will need to take pancreatic enzyme supplements before every meal, for life. No big deal in the scheme of things. She isn’t diabetic, but still checks her blood sugar levels once a week.

Soon she will begin six months of chemotherapy. She is petrified. Who wouldn’t be? 12 cycles via a PICC line. The last of three concoctions are delivered from a pump which is worn at home, and removed by a visiting nurse after 46 hours. Then 12 days rest before the whole process begins again. This is what her oncologist calls ‘insurance’. It’s brutal, but it offers the best chance for the best outcome.

So this where we are at folks. One day we were enjoying a family outing, all picnics, fresh air and sunshine. The next day, literally, symptoms presented themselves. The thin line had turned into a tripwire and sent us sprawling into a world of urgent blood tests, worried expressions, scans and consultations. Suddenly we were holding on to each other. Nothing else would do. Suddenly we couldn’t think of anything beyond living. Suddenly our world was distorted and unrecognisable. It was a place that invited us to sink, having discarded the crust of certainty that had proved so dependable throughout the years.

We have shed tears and shared fears and, even though we’ve been together for the better part of half a century, we now know the most startling truths about each other and ourselves.

Dear friends have urged us to stay strong, and for the most part I believe we are doing just that. And we are looking forward, feeling for that thin line one tentative step at a time.

 

A Day of Thoughts

Life has a hard edge, doesn’t it? Sometimes, no matter which way we turn, it’s impossible get comfortable. Even the simple escape of sleep is laced with fears and challenging obstacles. Who hasn’t woken in the wee hours with the troubles of the day playing in a loop, usually to some random tune? What someone once described to me as having the “washing machine head”.

The news should be avoided at all costs, but we’ve evolved into a species that has to know. We’ve long passed the point of accepting those things we can’t change. We get the facts, do our best to verify them (sometimes), stew in them for a bit and hand them on, usually through social media. Like some weird and twisted relay race, the baton of breaking news moves from hand to hand, at great speed, and there’s never a finishing line in sight.

About a week ago Mags and I went for one of regular walks. The air was ringing with birdsong, the sun was on our shoulders, and the air was fresh. In the hedgerow a tiny blue butterfly moved woozily against the green. We had no idea what it was called, but it was a thing of beauty, and that was enough. A brief moment of delicate blue. A life as large as any other. A dancing purpose. A cushion against that hard edge.

The Kids are Alright

There’s a very human moment in series three of Fargo, when Sy Feltz breaks down in his wife’s arms and sobs. The reason? Bewilderment, plain and simple. The chaos that has arisen all around him has pulled the last remaining threadbare remnants of certainty’s rug from under his feet. It’s still his world, but he no longer recognises it.

I know the surreal nature of Sy’s situation only too well. In my own dark days, more than 25 years ago, I didn’t have bodies, blackmail or life threatening criminals haunting my every waking hour. But I had enough emotional disturbance going on to stretch my anchor lines to the limit. My own nadir was marked by a particularly frightening episode of disorientation. Driving to work, along an all too familiar route, I found myself, inexplicably, in a cul-de-sac I didn’t recognise. I had no recollection of making the turns that brought me there. I just arrived, confronted with half a dozen unidentifiable bungalows, seemingly bent on wrapping themselves around me, and not in a friendly way.

That was a long time ago, and my life has long since been purged of that exceptionally toxic mix of circumstances. But in recent months something has gradually dawned on me. My world, beyond family and friends, is becoming harder to recognise. My own rug of certainty has frayed under the traffic of insidious mixed messages and mischief making. The scuffmarks of racism, intolerance, pollution, political skulduggery, and outright inhumanity are indelible. It’s all out of shape. Pulled this way and that, alternately, by hope and despair.

Here is the news: the grown ups have lost the plot, and only the kids can save us. I truly believe this. I applaud the youth striking for climate action. My heart feels lighter when I see Greta Thunberg say her piece, in the same way that it did when Emma Gonzalez stuck it to the NRA and Donald Trump and called BS in the wake of the Parkland shooting.

My own grandchildren are often aghast at the way some people in society are treated. The eldest, offers a well practiced and passionate ‘thumbs down’ to those in positions of power, who have abandoned their responsibilities. The twins (aged nine) simply dismiss what I would call unjust and callous, as mean and unkind. They already know, as do many of their peers, that the world we’ve shaped for them is unacceptable. But new patterns are way beyond the design stage, the means of production is being rallied. The kids are about to weave their own rug for the future, and they have already chosen the certainties with which they wish to bind it.