After Normal Life

We’re out walking again. A daily stroll in the early morning sunshine. The lane has become a leafy tunnel in our absence, and the birdsong echoes and reverberates along its length as we step. It reminds me of the excited, musical whooping and whistling of children, each outcrying the other. Infant’s voices in the hollow of a cavern or the parabola of a stone arch.

Sensing the breeze on my face feels new, along with all it brings. The scents and sounds of a spring day bursting to get my attention. Out of the shade I shoulder the familiarity of the sun and carry it lightly. Warmth is never a burden.

It’s just an hour a day, but it fits neatly into our new world of distractions. Close the door on confinement and catch up with all that feels lost. Then, all too soon, we are banged up again. We have become our own wardens, and will remain so until certified fit for parole.

We pass our time easily and the boredom factor doesn’t get a look in. We’re still baking despite the fact that flour and yeast would seem to have taken on roughly the street value of premium drugs. It seems entirely plausible that, soon, procurement will only be possible via dealers who have stopped peddling toilet tissue in favour of raising agents.

I’ve read ‘Normal People’, by Sally Rooney. Getting hooked on the TV adaptation was inevitable. It’s so good, it’s only possible to sip at it, one short episode at a time. Likewise, ‘After Life’. I’m not generally a fan of Ricky Gervais, but the man deserves a heap of credit for both series.

Oh, and the soundtrack to ‘Normal People’ is superb, too. Perfect music for abnormal times.

Soap Opera

Is it me or are the first cracks beginning to appear in the lockdown? At the beginning of all this our Close was jammed with parked vehicles all day long. Every available space taken. Overspill lined along the grass verges as though the occupants had turned up late for a local event.

That’s not happening now. Cars come and go. You can’t help but notice that some people disappear for the entire day, sometimes overnight, with their kids. If you’re observing the government advice, your life has become so static and predictable, you develop a kind of hypersensitivity toward the slightest movement outside. The cult of curtain twitching has a strong pull. What was once simple curiosity, becomes stealthy surveillance. If someone is moving out there, what is the threat level? Are they wearing a mask and/or gloves? If not, why not?

Our postie doesn’t wear any protection at all, yet he visits almost every address every day, including the block where there has been at least one confirmed case of Covid-19.

Two men were sent by our housing association to clear some carelessly discarded household items. They were wearing the standard industrial gloves issued to workers who need hand protection. But after heaving several black plastic bags and their unknown contents into the back of his truck, one of the guys proceeded to scratch an itch on his face without removing his glove. Similarly, we watched with alarm when a refuse collector, wearing disposable latex gloves, manhandled the communal bins to the rear of the lorry before taking a water bottle from his pocket, unscrewing the top with his germ laden latex gloves, and enjoying a long swig.

Are we, in our efforts to dodge the virus, succumbing to pandemic paranoia? Short answer is no. The urge to survive is basic, isn’t it? Basic hygiene isn’t rocket science. Before touching anything that’s destined for your mouth, make sure your hands are clean. The casual observation that everyone has to eat a peck of dirt before they die will no longer wash. We, on the other hand, must.

Staying put

Just a year ago we were enjoying a family holiday in a cottage overlooking the Camel Valley vineyards. Wow! How the world changes.

Following Mags’ diagnosis in May we promised ourselves to be forward looking and try, as hard as it might be, to remain positive about the future. During post-op recovery life became a series of small steps, figuratively and literally. By August we were taking our usual two mile walk across country to the village shop and back. With the sun on our backs we promised ourselves that 2020 would be a year to make the most of. We’d get out and about more, take advantage of the long summer days and drink up the goodness those times would offer.

The chemo began a few days after Mags’ birthday. The ensuing three months passed in the form of a solemn synchronicity; the warmth of our days fading as the weight of treatment took its toll. By November, when the PICC line was removed and the chemo ended, we had the festive season to look forward to, although we were prevented from taking a daily stroll on cold days as exposure to a sudden drop in temperature could cause breathing difficulties. Even residual amounts of Oxaliplatin in the system might prompt a throat spasm, making it difficult to swallow and/or breathe. So we accepted the advice, and only ventured out on milder days. Which meant that we were, most of the time, cooped up in the flat.

Still, spring was around the corner. Soon the flowers would be blooming, the hedgerows turning green, the trees, fully dressed and ready to look summer in the eye with leafy confidence.

As per the promise we made ourselves, we started getting out and about more, increasing our walking distance daily, passing the time of day with familiar faces once again and taking the time to stand and stare, as we always used to.

Now, just as our own dose of uncertainty came out of the blue last year, the entire world finds itself in the realms of the unknown, hanging on the words of scientists and medics, hoping each day for an improved prognosis.

It’s going to be a long haul, and I fear that the promise of a summer that helped to get us this far will have to be appreciated from the wrong side of our windows. There are suggestions by people who know better than me that ‘shielding’ may be in place for many months. But we already miss the outdoors, and we’ve made an agreement that if this goes on for longer than we can bear, we’ll mask up and sneak in a walk before the sun or anyone else is up. We miss our family. It’s one thing seeing them and talking to them on FaceTime, but there’s no substitute for a hug.

Yet for all the unpleasant ramifications of the lockdown, Mags and I are, without a shadow of doubt, living a precious year together that we might once have written off as being a lost year.

Who are we?

One of my favourite writers, Joan Didion, once stated, “I have already lost touch with a couple of people I used to be…”. I’ve often felt this about myself. But these past seven or eight months have flipped that quote. I’ve actually discovered a couple of people I didn’t know I was.

When you live with someone for a very long time many of your conversations take place in the abstract, usually prompted by a simple, sometimes random, question. What sort of person might our daughter grow to be? How would we spend a substantial windfall? Can we ever truly prepare for old age? What’s the point of a career? Is enough really as good as a feast? How would each of us cope without the other?

We, like many others, have speculated and tested our imaginations. Then we have sighed and got on with our daily business while the unknowns and inconclusions pooled around us only to quickly evaporate, until next time.

Recently there has been a been a lot of form filling for us, and questions that demand concrete answers. A recurring one has been, “Martin, are you Mags’ primary carer?”

My response, on first hearing, was “Hold on, what? Primary Carer?”

“Well, for the record we need to know,” comes the reply, or “To complete the process, all fields on our form must be filled. No questions left unanswered.”

So, according to officials I’m a primary carer. But the reality is I just care, the way we have for one another these past 46 years.

The other person I’ve discovered is the one who had to learn quickly about signs and symptoms, chemical concoctions, and the pitfalls of prognostication. Medics are, on many levels, miracle workers, but they cannot, by their own admission, foretell the future of a cancer patient with any certainty. Neither should they be expected to.

Mags has a CT scan on 23rd of this month, and a follow up with her oncologist a few days later. Whatever the outcome, it’ll be faced by the people we now are, and maybe some of the people we were, once.

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!