The mystery and difficulty of cancer recovery
The mystery and difficulty of cancer recovery
Terror and detachment; walking back to myself; acceptance and patience
March 2021; after seven months (years, lifetimes?) of treatment, a version of myself walked out of hospital with an appointment for a follow-up scan in six months’ time. I didn't ring the ‘end of treatment’ bell that cancer patients usually ding and dong. Was the bell silenced due to the pandemic? Was everyone just too busy? How would I feel now if I had grabbed the rope, that rang the bell, that the nurses cheered at, that the loved ones clapped to… in the house that cancer built?
Three and a half years later, I start to write and feel a sickening panic. A sticky, dark weight gathers in my core. My magic eye for joy and delight in the world has swollen shut. The dark, overbearing shadow of cancer hunches within me ready to pounce and my cheery self has dashed away. I am quiet, alone in the house. I try and biopsy the pain. It has been gathering for a few days; tears dropping easily. A thundery unease, a rumbling and bang, it’s released in an almighty roar. I wail and sob and let it rage out of me. Terror. I am terrified. I am fifty-seven years old. I am seven years old. I stamp and shake. I don’t attempt to regulate or crush the crash. Sarah appears and my suddenly skeleton-less body collapses on her. I am three inches taller and wearing trainers. Sarah stands up on her tip-toes to hold the flesh and mess of me up. We will laugh about this tomorrow.
In the orchestra of my body, all is discord. Organs go rogue and refuse to follow the score. The cymbals are having a field day. The violins screech. The wind section lets out long, dolorous notes. It’s an unholy racket and I don’t attempt to suppress it. I wonder what might be revealed. Surely this wild rumpus showed up for a reason.
And I recognise an uncomfortable, frightening truth. I am not recovered. A part of me remains in the hospital. Pieces of me are in the cancer ward, some Mel cells remain in the scanning machines, others in the surgery where I had a lobectomy. I cannot connect to the self that endured the torment of treatment and yet she exists. I am fractured.
Previously, on hearing that people had finished cancer treatment, I imagined relief and celebration. Oh, the naivety. In 2021, I reacted mysteriously. I wanted so badly to escape the hospital. And yet I also felt contained there. Not having had a loved one to witness my experience rendered it more surreal, more horror-film noir. My cancer self lived in the hospital, adapted to her environment. Like a form of Stockholm syndrome, I was safe in my incanceration. It was what I knew. How to take the Mel shell out of there, away from the systems and treatments?
To survive, my soul had detached but my poor cells and nervous system had to endure. They became institutionalised, abandoned by their companions, my heart and mind. I picture a SWAT team on a vital mission to bring my cancer hostage home. I am clearly traumatised.
On finishing cancer treatment in Germany, people are offered time in a recuperation centre. Time to process and heal, to receive physiotherapy or counselling. Maybe people return to the workplace and contribute to the economy more quickly and with more robustness? In Victorian England, tuberculosis patients were sent to sanatoriums to breathe good air and to rest once they were well enough to leave hospital. I long for a modern-day Downton Abbey for us cancery folk run with kindness and efficiency; with impeccable white sheets, fresh food, constitutional walks and sunshine. Softness, peace. A convalescence sabbatical might allow us to begin to accept and adapt. Space to explore the dark underside, the fear, the confusion, the what-ifs; to begin to grieve for what we have had snatched from our control, from our bodies. An in-between place to move from then to now.
There is little follow-on care provided by our health service after treatment, although there are remarkable charities that provide as much as they can, to as many as they can. There are inequities; those most in need of support are the least likely to reach out.
The end of treatment marks a beginning. It isn’t over. For many of us, the true, personalised work of recovery starts now. Time is needed to regain mental and physical strength; to accept shock and suffering; to discover and understand our story; to begin to absorb the experience into our identities.
On my worst chemotherapy days, I could barely hobble to the bedroom door. In the spring of 2021, I am desperate to be outdoors and to walk. I start by walking round the block and admiring pandemic front gardens. I walk around the local cemetery and read quietly to myself the names of the dead and imagine what they maybe endured. I walk through public golf courses and royal parks. My favourite is Regents Park and its rose garden. I progress to following paths in the Chilterns, Kent, Norfolk either solo or with Sarah. Each step is a gentle nudge to normality.
On one level, I live in a state of quiet delight. Look at the yellow of that daffodil! On another, I now realise, I was not in my body. My damaged cells and nerves had managed without connecting to my soul and were now, like a hurt lover, carrying on without me. They had their own recovery to handle, thank you very much.
I asked my therapist, who I’ll call Mary because that isn’t her name, how I was in 2021. Because I can’t find myself from then. She feels perhaps I intellectualised the experience. I could speak pragmatically, operationally. And yes, I remember retelling some of the medical tales. The terror of treatment over, I could not turn to face, feel or accept what my body had endured.
I trusted that in time, my cells, nerves and self would fizz and fuse. My body waited for my heart. My soul waited for my body. Together, still, we meet in moments and re-ravel.
After last week’s terror fest, I message eight friends to tell them I am having a rare, dreadful day and please can they send love as I feel so alone. One beautiful spirit lives in Bali, sends me a photo of that morning’s sunrise and wishes me a happy International Peace Day, (I suspect she is the only friend who knows this is a thing). And I go for a walk, a different route today towards the marshes. I cross a busy A road. Traffic, a factory, smiling people having lunch in the pub on the canal. And magically, a waft of incense and an almost inaudible beat and tinkling bells. And I see a gate and through the gate, a neat, well cared for garden and a string of flags. And in the garden, a Buddhist temple. And in the temple, music and chanting and praying and a golden Buddha. Bright yellow lanterns, oranges as offerings, tall magenta orchids. I stand by the door. I don’t wish to be disrespectful. And I am smiling and I am weeping quiet, soft tears and I am connected to my frister in Bali, to the friends who love me.
Some doors lead to gentle. Some sounds calm the heart. And whilst I don’t step over the temple threshold, I can sit outside, listen, breathe in and accept this gift. There is beauty in these bricks and I am, for now, back in my bones.
Lung cancer facts
Increasing numbers of women and non-smokers are being diagnosed with lung cancer. Some as young as 19-years-old.
It is the biggest cause of cancer death globally for men and women.
Symptoms include: a persistent cough; breathlessness; chest infections; chest, back or shoulder pain; losing weight; unexplained tiredness.
Not everyone who goes on to be diagnosed has a cough. Including me.
Find out more about lung cancer:
Hello lovely daughter. I wish we had the words to be able to say how much we admire your ability to say exactly how you are feeling. Never forget how much you are loved and so proud we are of our darling girl. We are always here for love and support whenever you need us. Love and biggest hugs now and always. Mama and papa xxx
Oh Mel. I wish I had your words. I have nothing: I’d like to say how strong you are, how brave. But is one brave and strong if you don’t feel it? If you have no other option. You are extraordinary and brilliant. And all I can do is offer love and support and my weak shoulders and pathetic words…and my sunrises/sunsets are always yours. Always.