1,000 days in the long middle

It's a few days after my 52nd birthday. We had a great Bank Holiday weekend, celebrating with friends and family; even the weather held out until my annual birthday barbecue was winding down.

There have been four such barbecues since I was diagnosed. It dawned on me, as the third year of my cancer journey came to a close, that I have lived for over 1,000 days following the colonoscopy that revealed my 4cm primary tumour on Maundy Thursday 2023. One thousand days! It's something we, and the experts, hoped for but didn't necessarily expect.

While the tumour still stealthily clings to the wall of my colon, the cancer it's spored in various bodily nooks also appears stable. At least that's what we hope we'll find out when I get my quarterly CT scan results from my consultant next week.

I started the seventh monthly cycle of my current chemo regime this week. Recently, this has caused more quiet anxiety than any scan results. The last couple of cycles have featured full-on, debilitating, nausea. I finally got on top of this in April by pre-emptively downing anti-sickness pills before every dose of chemo tablets, rather than reactively when nausea flared. So far, this week, the sickness has stayed away meaning I can get out and about as long as I allow time for rest and don't go nuts. This might seem a small thing, but not being imprisoned by treatment makes it feel sustainable and cracks open windows of possibility.

The last time we saw my consultant, in January, she explained that my treatment (a combo of chemo tablets at home and targeted drug infusions in hospital) is designed to keep the body on its toes by not allowing full recovery between each cycle; like making an athlete repeatedly train in their threshold state. I guess this is to dissuade cancer cells from regenerating as they are hit by wave after wave of drugs.

This leads to a cumulative build up of fatigue. I've noticed it in the slower and slower runs during the recovery periods of my cycle. This doesn't stress me like it used to, thanks partly to an admonition from Lisa as I drove her to work along the lines of: "Stop talking about how slow you are; it's just amazing that you're still running." Running is a barometer of my body's partial rejuvenation each month, as my heart rate calms and my distances increase over the four or five jogs I manage in a recovery fortnight. Getting off the beaten track also offers heart-lifting bird song and rejuvenating views, shown in this recent photo from a local canal path.

The toll of my treatment means my neutrophils, white blood cells who fight off infection, are running out of puff. A while ago, to mitigate this, I started self-injecting with Filgrastrim, which helps the bone marrow produce neutrophils, each month. This proved inadequate in April as my neutrophils failed to rally mid-cycle, so my targeted drug infusion was delayed by three days. This led to an extra hospital afternoon which, along with the CT scan, blood tests at two other hospitals, a filling at the dentist and my latest Covid jab, meant my recovery fortnight felt like a tour of the area's medical establishments.

Still, day piles on top of day, and we are thankful for that. However bitty, frustrating and changing things can be, there is still much life to be had.

Another reminder of this was a letter telling me I needed to re-apply for disability benefit (PIP), awarded for three years at a time for those with terminal illness. This application involves a Special Rules (SR1) form from your medics to fast-track your claim. To qualify for an SR1, the experts have to say they "would not be surprised if they (the patient) were to live for less than 12 months." This awkward official phrasing is typical of the hilarious way we talk around death.

I was startled to find out I already had an SR1 with my name on it when the helpfully efficient Macmillan support team sorted my PIP in 2023. A few weeks ago, it felt like a minor triumph to request another SR1 after three years of failing to not surprise the doctors with my lack of life. I was told about a resilient individual who recently had their SR1 renewed for the seventh time. That this is the exception to the rule, though, was highlighted in a poignant conversation with the MacMillan woman talking to me this time, who also filled out my 2023 claim. I had forgotten her but she remembered me and wished me well, saying she is soon to retire so will not be there to deal with any future SR1s I might require.

My experience of living for over 1,000 days with cancer is encapsulated in an article I stumbled across last week following the death of Richard Harries, the former Bishop of Oxford. During a recent Radio Four Thought For The Day, Harries referenced the article by Janis Chen which unpacks the "long middle" in which people "maintaining" with incurable cancer dwell.

Chen, diagnosed with Stage 4 lung cancer aged 51 in 2022, describes this liminal state as a "rarely charted territory where the body remains fragile, treatment constant, and life does not so much move forward as stubbornly persist."

The long middle is thanks to advances in medical treatment which allow some terminally ill people to keep going for years, even decades. Chen, a psychologist, explains: "I view this not just as a medical victory but as a profound existential shift: we have replaced the suddenness of the cliff with the permanence of the high ridge...

"When you are cured, the world cheers; when you are dying, it mourns. But when you are simply maintaining, the world is at a loss. We navigate the “scanxiety” of the quarterly CT and the eerie, metallic hum of the MRI, planning for a future that medicine hands back to us one prescription at a time. We are playing in the “extra time” of a match where the whistle refuses to blow, except the scoreboard has long since stopped working.

"This absence of a final whistle necessitates a new, tempered kind of stamina. Here, strength is rarely about the “fight”. Military metaphors such as “battling” and “warrior” are a leaden weight for those of us who cannot “win” in the traditional sense."

There is much that resonates in Chen's analogies. Her picture of existing on a high ridge is a helpful counterpoint to the image in my last post of living in a crater. Both are permanently unsettling but can offer magnificent views: either the panorama from the mountain top or the micro-climate of growth in the cavern's rich soil. As a long-suffering West Ham fan (don't go there!), the sense of constantly playing in extra time, not sure when the final whistle will blow, is the closest to a perfect metaphor for living with incurable disease.

I've mentioned before that pressure to seize the day and not sweat the small stuff is unhelpful when living with the constant hum of cancer. Our car not starting, my laptop dying or trying to book holiday insurance (reluctantly declaring to the broker that my neutrophils are non-existent) can cause more stress than it used to. "Fatigue in the long middle is not mere tiredness; it is a heavy, systematic gravity that shortens patience and magnifies anxiety," says Chen.

But, as we have found over our 1,000 days, the stubborn persistence of keeping going does offer its own rewards, however murky things get. Lisa observed the other day that we had been "licking our wounds" for a long time and might be ready to shift season. This wasn't a criticism - animals lick their wounds as a natural healing reflex - but a suggestion for a subtle switch, to make sure we don't miss life and joy and hope when they inevitably bubble up or cross our path, which they do almost daily.

Chen expands on this: "If the long middle offers a silver lining, it is the brutal sharpening of one’s discernment. It leaves only the essential, revealing that meaning resides entirely in the quality of our attention. To walk through a park, to watch the sunlight catch a river or to register the laughter of children against the thrum of a passing bus is to realise these are no longer background noise; they are the destination....

"In a culture that fetishises the loud “bounce-back”, choosing to live gently, attentively and on one’s own terms is an act of quiet defiance. The long middle is not a waiting room, nor a preamble to a finish line; it is a demanding, vibrant and profoundly human place to be alive."

So, here's to the next ten, 100 or 1,000 days of summer barbecues where laughter lingers, of weekday mornings of rousing our youngest out of bed, of four-day cricket matches that end in draws and of family games nights where winning still matters. Life is a miracle and we are grateful to be in the middle of it, for however long that is.