Signs of life on planet cancer

From travelling solo to finding a constellation of twinkling fellow cancernauts

In memory of Robyn and Linda, two beautiful young women who passed away this month from lung cancer. Released from pain, held in our hearts.

August 2020: one afternoon Sarah and I sit on my side of the bed in a square of sunshine. Through the open window we hear children chortling, families doing the things people do on a normal summer’s day. My phone interrupts the gentleness. A consultant I haven’t met begins to speak. The results of my scan are back, he tells me matter-of-factly. You have a malignant tumour. My mind frantically tries to clarify the difference between malign and benign. The cancer has set up home in my left lung and in the next week or so I will have a lobectomy. I have no idea what this is. I am to go to hospital and have half my lung removed. My lovely lung that drew in air and screamed into life 53 years ago in a tiny flat, to a 21-year-old mother. The lung that is surely a vital part of me. Major surgery.

Neither my lungs nor spirit can compute - we both let out a two-lunged wail while we still can. Sunny outside yes but unimaginable anguish in our pale-yellow bedroom.

Half of all the people we know and love, half of all the people we don’t, will be diagnosed with cancer. And yet, we rarely speak of it. It is whispered perhaps, a shameful secret or referred to euphemistically. When the cancer meteor crashes, I am alone and abandoned in a new land. Catapulted to planet cancer. A dark, terrifyingly unfamiliar place: a landscape I have never walked through, a language I don’t speak. I am a cancernaut tethered to my hospital, the mothership - floating in fear like an astronaut in space. Except I have had no training. I have no colleagues, no safety systems. As I take my first steps, it’s a solo expedition.

Treatment during Cancer in the Time of Covid is an isolating otherworld. The mask and hospital gown become my astronaut suit. I move in solo slow motion, a moon walk. Hospital corridors are the footpaths on the new planet; the metal equipment, wires, tubes, needles are the survival tools; the strange new words and exchanges with the medical team, my introduction to life on this land. When finally I finish treatment, I take the first shuttle back to earth. It is bewildering having time-and-space-travelled home. But I want nothing more to do with my unasked-for solo space exploration. I want no souvenirs. I am incapable of speaking of it.

Slowly my mind and body begin to speak to one another again and I reach out to lung cancer organisations. I peek in, I read people’s stories, I watch from the sidelines. I see myself in the tales, understand the language, recognise the rocky landscape. And I start to understand that I am not alone. Treatment was monstrously isolating but in recovery I can find a tribe. The cancer planet is peppered with people. I come out of hiding, ready to rebuild. Many, like me, stayed invisible in order to cope, couldn’t look up or reach out. Now we find one another. We nod and smile. I see you. No words are needed but I hear you.

As it becomes clear that my cancer is making a comeback, I am ready to meet my fellow travellers in the real world. I can’t do this alone. I am ready to share, to find and offer solace and kindness and safety. To give and receive with grace. To open to this place I am in and be part of this brave new world. To begin to accept that I am living, with cancer.

I go to lunch with two other good souls who have the same mutated lung cancer. We meet one too-hot summer’s day at the Victoria and Albert museum - full of beautiful artefacts, space, calm. I listen, mostly I listen, to their tales, experience, knowledge. I am worried that speaking to inhabitants of the ‘other’ planet will bring unwelcome memories. That it will be too much. In fact, I feel relief and astonishment. Women I have never met are speaking easily about the hidden place. We speak about diagnoses, drug treatments, side-effects; about family and holidays. I can rest here in the known.

Slowly, I meet more people from the lung cancer tribe, online and in real, earthly life. I realise that with my non-cancery friends, I am mostly bright and breezy and easy. I laugh and go on walks. We hug each other tightly. I love them dearly. They help me land back on earth, they connect to the person I was before. But, even if I chose to, and mostly I don’t, we can’t share the agony of what happened. Of what might still happen. I am my authentic pre-cancer self, altered. Cancery Mel is absent. Only through my writing quietly here do they meet her. Thank goodness for the written word, for the creative impulse released by my illness.

When my recurrence is confirmed and the shock has settled, I embrace the new mission and report for duty. I climb back into my spacesuit and navigate my way around my new hospital. I learn the terminology. Maybe I can help onboard startled new recruits. To provide perhaps a manual, translation services, counsel, comfort and above all… hope.

After all, hope is our rocket fuel.

I start to write shortly after my stage 4 cancer is confirmed. The connection with people that love me and with new people brings joy. The sharing of my truth finds other people’s truths and we find consolation. Not always about cancer - maybe another illness, caring for a loved one, shocking, life-altering events or simply the beauty and agony of human existence. And we are less alone. I am moved by the engagement, exchange and acceptance. A kind of magic is conjured, a softness as the dark sky becomes populated by one star after another.

I feel proud and protective of planet cancer. I am no longer fearful of her. I am driven by an unstoppable cosmic force (was it something in the space dust?) to truly inhabit, to love my new planet and all who visit or, in the case of those of us who are stage 4, live there.

Through social media, I connect with lung cancernauts across the world. A woman who makes me laugh with every post, no matter her health status. Another woman who discovers her lung cancer through screening and is about to go on a wild expedition to Mongolia. A remarkable young person in the US receives a ground-breaking double lung transplant and will need love and financial support to manage her painstaking recovery. A woman in Paris writes a book about lung cancer life.

I feel gratitude for these connections. I belong.

I meet a delightful lung cancer group at a conference in Italy and we dance together. I am grateful too for a new friend - a fabulous woman who set up a cancer research charity and is truly tireless, energising, inspirational in her pursuit of treatment options for all. Someone in the army. Another in finance. Teachers, doctors, retired people, and dozens of young lung people. In their twenties and thirties, increasingly women, increasingly non-smokers. Different spaceships, mutations, different cancernaut costumes but all from the same cancer planet. We are fellow travellers, a fellowship, and we create a hallowed space, a sanctuary.

We are busy. We campaign, share our stories for lung cancer charities, create videos. We post content, contribute to awareness projects, speak to government task forces and at conferences globally. Some are still working, often in demanding full-time jobs. Others are mothers of young children or carers themselves. And whilst so many of us are inhabiting exhausted bodies and minds, we appear tireless in our quest for answers, solutions. For research funding, equity of care, access to trials. For the right drugs to be available to the right people at the right time. We are vulnerable and full of courage. We are exhausted and full of vigour. We are petrified and calm.

If we don’t advocate for ourselves, who will?

We cannot be forgotten, left floating in space. We have lives to live despite all that is unpredictable, unknowable.

I read Orbital by Samantha Harvey in early January this year. An elegant, beautiful book centred on six astronauts orbiting earth. An exquisite read. And since then, I am like a five-year-old about the night sky. Is that a star? A planet? Do planets twinkle? What, actually Venus up there just right of the moon? There they sit winking and guiding our spirits away from the trials of planet earth and up, up, up to the vastness. And I realise, I do not need to be tethered to the mothership. I am steadied, grounded by the display of foreverness above and the tribe here on earth.

Harvey writes about the feelings of the astronauts:

‘At first on their missions they each miss their families, sometimes so much that it seems to scrape out their insides; now, out of necessity, they’ve come to see that their family is this one here, these others who know the things they know and see the things they see, with whom they need no words of explanation’.

With whom they need no words of explanation. We rest knowing that our fellowship intuits our shared experience profoundly. We are perhaps ‘a floating family’.

Sometimes, and this week is one of those times, we witness a shooting star. The star shines brightly as it passes too fleetingly across our vision. It is astonishingly beautiful. We are glad we witnessed it. We gasp and tears spring from all four corners of earth as we realise that the star represents one of our cancernauts. That one of us has left this life. And although they may have lived on the other side of the planet, although we may never have met them or exchanged spoken words, smiles or hugs, we feel such sorrow. We are quiet and small and full of loss. It is so unjust. We scoop up their fading light and we add it to our collective star shine. We take them, these cancer travellers, with us as we continue to speak up and out, share our stories, hold one another up.

We see you, fellow traveller. We see you; we feel you and we will not forget. And there will be a day, we know there will, when we are not just offered months or years of extra life. But a cure. A cure for this inexplicable illness.

A star is extinguished. Yet hope shines on.

Cancer research

Please champion cancer research. One in two of us will be diagnosed in our lifetimes. Researchers create drugs and vaccines that give us longer, lovelier lives.

More about lung cancer research here:

Oncogene Cancer Research

More about lung cancer here:

Roy Castle Lung Cancer Foundation