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.