In the space of five months, I have been reduced from being a lively 65-year-old wife, mother, grandmother and small business owner to being bed bound, immobile, needing full-time care and struggling for every breath. While my day-to-day symptoms have eased, I now live with a treatable (for the time being at least) but incurable cancer. How did I get here?  And how do I live with this?

I first noticed a persistent cough in February and as I’d been treated for lung cancer over six years ago, I was hyper-alert to even the subtlest changes in my body.  My GP agreed that given my history, we should be aggressive in pursuit of a diagnosis. But no-one could tell me what was wrong despite four consultations with my GP, two visits to A&E, chest X-rays, a blood test that suggested the possibility of a heart problem, and a home visit from the respiratory team who needed to see the impact of a short walk on my breathing since my oxygen saturation levels suggested all was well.

Breathlessness

My GP had organised an echocardiogram believing my breathlessness might be related to heart failure, but I would have to wait for weeks for an appointment. In desperation, I broke a long-held principle that I would never jump an NHS queue, and I paid for a private consultation with a heart specialist. He ruled out the possibility of heart failure and promised to mention my symptoms to his NHS colleague, coincidentally, a surgeon whose care I had been under for my first cancer.  But for this connection, I doubt whether I would have received a diagnosis in time to save my life. He also suggested another trip to A&E, this time to request an ear, nose and throat examination. I noticed that A&E had become a default route for people needing to circumvent record waiting lists.  After another seven-hour wait for emergency care, the ear, nose and throat examination proved inconclusive. Before I left, I asked the doctor what I was meant to do about my breathlessness. “You’ll need to make an appointment with your GP.”  I knew this would mean another two-week wait. I was discharged without treatment – and increasingly, without hope.

I began to think I wasn’t believed. One A&E doctor had remarked, “You look so well,” and her meaning was clear: ‘Whatever you’ve got, it’s not serious’.  Foolishly, I took comfort from this. I have learned since that my persistently pinkish complexion and professional status could mask serious illness. In a crowded A&E waiting room of sick and injured souls, I appeared to bloom with good health. Even now, I grimace ungratefully if someone tells me how, despite the loss of hair and weight, ‘you look so well.’ How my appearance misleads, putting medics off the scent and reassuring loved ones that things aren’t so bad.

As my symptoms worsened, I had to close my thriving counselling business, ending many long-term therapeutic relationships. I cancelled a much-anticipated anniversary holiday to Spain. Worst of all, I no longer had the energy to care for my grandkids or enjoy the lovely rough and tumble of family life.

Vulnerable 

By the time I saw the heart and lung surgeon in June, I had to be pushed to the appointment in a wheelchair by my husband who had become my full-time carer. I had become bed bound, immobile, unable to wash or dress myself. Helpless, vulnerable.  And when I could summon enough energy, furious.Pointing to a screen shot of the X-ray that had been taken in the hospital months before, the doctor identified the problem that had eluded so many of his colleagues: a blocked trachea. Shocked at my deterioration (he last saw me in January to discharge me after I’d been cancer free for six years), he demanded to know why I had done nothing about my catastrophic symptoms. Not for the first time, I felt shamed for my failing health.

Such is our culture’s faith in the medical model, I suspect that even the most compassionate medics ultimately transfer their failure to cure to their patients who then introject that failure as personal shame.

By the time I was admitted for emergency surgery, my trachea was 70 per cent blocked and a stent had to be inserted to open my airways. As I came round, I could breathe without difficulty for the first time in months.

But my relief was short-lived. I learned by chance that the cause of the blockage was a cancer. Unexpectedly, I had been invited for a PET (positron emission tomography) scan and when I telephoned to ask why this was necessary a sheepish doctor admitted that cancer had been found but, likely it was curable and that treatment combining radiotherapy and possibly chemotherapy would start soon.

Treatment

When I met the oncologist two weeks later, it was clear that my treatment options were more limited than I had been led to hope. And as to whether my cancer was treatable – that was a moot point. The oncologist searched my face to check I was comprehending what he was saying. I have learned that medicine is an art as much as a science and that in communicating probabilities, outcomes and prognosis, doctors are reluctant to be pinned down. Their conclusions are cautious, their language nuanced and ambiguous. And much as I would like it to, my gut cannot discern the subtlety of statistical probabilities. Its visceral response to uncertainty is tension, a ‘holding on’ in anticipation of the relief of knowing, for good or ill.

From what I could glean from his cautious analysis, the oncologist believed that the cancer was certainly spreading, it was aggressive and there was no telling where it might appear next. The insertion of a stent meant that I couldn’t have radiotherapy. Instead, in June I started four cycles of chemotherapy and immunotherapy treatment (‘we’re throwing everything at you’, said my oncologist) knowing that my cancer would not be cured though it might be kept at bay.  By October tests showed that the cancer seemed to be retreating, and I could continue with immunotherapy.

So what now?

The life I knew and loved has gone. On hearing for the first time that my cancer would not be cured, my first emotion was rage or, as I prefer to characterise it, old anger that has been brewing awhile. Over the years I’ve developed a genial relationship with my anger, an emotion I have reprised from a childhood that kept it firmly in check (‘good girls don’t lose their temper’). These days I welcome the whoosh of energy I immediately sense when I experience an injustice or a breaching of my boundaries.

Nothing motivates quite like anger. But then, that energy is so indiscriminate in its application: how can I guide this motivating force in a way that achieves results not destruction? Where to pin the hurt beneath my rage?

It’s taken me months, but I’m settling on a way ‘to be’ with my cancer – and all the conflicting thoughts and feelings it elicits.

I am trying to turn my wayward rage into purposeful action. That’s why I sent my local MP an account of my NHS experience in the hope that it contains ‘lessons’ for whoever cares to learn. I have spent many hours agonising about the systemic failures that neglected to diagnose my cancer at a point when, as a tiny dot on a PET scan, it might have been cured. The treatment I have received from every doctor and nurse has been unfailingly skilled and compassionate. But it has also been delivered by people who were clearly reeling under intolerable pressure, their attention stretched by the sheer volume of humanity in need of their care.

Sit in the waiting room of the oncology outpatients at the Royal Wolverhampton NHS Trust on a weekday to experience at first hand the shocking ubiquity of cancer: all those bobbing cancer caps.

Anger 

My anger seems to demand recompense for a hurt, but then, who has ‘done me wrong’ and what form could restitution take?  It was my misfortune for this cancer to take hold during the time of an under-funded post-pandemic health service that experienced record waiting lists, chronic staff shortages and a collapsing social care service.

Politics helps me to pin the responsibility for my hurt and anchors my anger in argument, debate and campaigning. I am the grumpy old woman on Nextdoor, Facebook and LinkedIn, shamelessly promoting my experience as the consequence of short-sighted and mean-spirited policies.

But this ‘being with cancer’ is a messy business, full of terror, confusion and despair – but also, and God knows I didn’t expect this, intense joy.

Soon after I was diagnosed, I plunged into an old text to give me a context for my protesting and sometimes impotent anger. The Consolation of Philosophy by Boethius, a sixth century statesman and philosopher who wrote while imprisoned on charges of sedition for which he was tortured and eventually executed, helped me to reflect deeply on the fickleness of fortune. I have always figured that a philosophy borne of such extreme misfortune must surely stand the test of application.

So much of my despair at the ‘misfortune’ of my incurable cancer is rooted in my longing for my former good fortune – my indefatigable energy and the good health I enjoyed for many years even after the diagnosis of my first cancer. Boethius suggests that it is the working of my imagination on the loss of my former good fortune that has ‘so corrupted your mind.’  “I know the many disguises of that monster, Fortune, and the extent to which she seduces with friendship the very people she is striving to cheat, until she overwhelms them with unbearable grief at the suddenness of her desertion.”

Possibilities

Knowing that the ‘greatest misery’ of my current condition is the grieving of my once happy and healthy state has made me wonder how I might be more wholly present and alive to my cancer in the here and now.  What new possibilities might present themselves when I see, as Boethius suggests, that ill fortune is instructive? It is through this blog that I will attempt to dive as fearlessly as I can into this experience to see what happens when I meet a condition that I can’t change with acceptance, even contentment.

If, like me, you have an incurable condition – or are caring for someone who has – I hope there is something here for you too, something you recognise or with which you can connect. I long to make this experience less lonely and isolated – so please join me if you can.