You look so well! - the stage 4 cancer body

The choice to smile; the beast of fatigue; what lies beneath

At a lung cancer conference in Belfast last week, I spot my oncological superhero, Dr Martin Forster, amongst the clinical and academic rock stars. I feel like I’ve bumped into Kate Winslet in a coffee shop. I bustle up to him, beaming. ‘Hello Martin! Youwontremembermebut… Sarah and I came to see you’. As soon as he sees Sarah at my side, he smiles. People tend to remember a chatty same-sex couple from the cancer clinic. ‘Hello, you look really well’ says Martin. I beam more and ramble on about who-knows-what. I have a gold star from a person who knows what cancer looks like. A person who sees a lot of sick people. Doc Forster thinks I look well. I am delighted and receive the diagnosis with gratitude.

Most of my stage 4 cancer kin look smiley, vibrant, unsick. We are the treated stage 4 folk, delighted to be walking the land. Yet, the phrase ‘you look well’ can be a complex one. A friend I haven’t seen for a few months pops in for a cup of tea. I open the door and we embrace, jump up and down and squeal like teenagers. ‘Mel, you look so well!’. Well-intentioned, from a place of love. But for me there is a subtext. So well… for someone with stage 4 cancer? I’m glad you look so well because then we don’t need to talk about cancer? Mel looks well so maybe she doesn't want to talk about her cancer? Is my friend relieved to eliminate from her mind the terrifying images we see of dying cancer patients in films or dramas? It is undoubtedly confusing for us both.

I am glad I look well. I wish I felt it too.

Do I unveil the list of symptoms, niggles, aches, pains, anxieties, terrors that I have? Or do I simply say, thank you? Do I say, ‘you too’? Me saying ‘you look well’ is not equal to a friend saying I look well. Does it sound loaded? Like I have purposefully batted away the subtle unspoken reference to my wellness? Do I want to chat cancer or remain in the precious realm of the ordinary?

I choose to step into the world with a smile, with joy in my heart, with a longing to be normal. Yet, five minutes before my friend arrived, I was booking my next MRI scan to see if I have a brain metastasis. To find out whether this beast of a disease has tricked my body, resisted the drug and mounted a campaign to conquer more space in my body.

There is another version of ‘you look so well’. It’s preceded with ‘but’.

In December, I am at the Macmillan centre buying charity Christmas cards. A precious, beautiful person I met at a yoga retreat was treated for blood cancer here. Her name was Emma. Heartbreakingly, she died aged 40. I feel maybe she is still at the retreat in France and I will see her there. It felt meaningful to honour her. Another tiny sliver of keeping her grace and strength part of this world. I chat to the good folk selling the cards and tell them about Emma and that I have lung cancer. ‘But, you look so well!’ Thank you? But nonetheless I do in fact have stage 4 lung cancer? What should I look like? I wonder if I am too smiley? Too chatty? Too normal?

Every day, I engage with many people in my community. I love to natter. I love exchanging chitter-chatter with cab drivers, in coffee shops, with nurses. It lifts me. I smile and laugh and ping-pong around spreading, I hope, kindness and connection. Because the kindness and connection I receive in return is so precious. I don’t know what else there is. Humanity. Sometimes we talk about cancer. Mostly not.

Cancernauts smile because today is a good day. Do we look good or any better than others of our age or do we look good ‘considering’? The truth is we are never truly well. The river of a chronic, life-threatening illness flows deep within us. Tomorrow could be the day we discover our options are limited.

It takes an almighty effort to quieten the cancer troll as it rumbles through our minds and bodies and say no, today is not a cancer day. When we’re peaky, leaky or crippled with terror, you don’t see us. We stay in our nests and burrow further down.

So I hereby present… the body scan. The status of my body four and a half years after surgery, chemotherapy and radiotherapy. Not as a hypochondriacal rant. There are many people sicker than me. One day I will be sicker than me. In the name of windowing into the real physiological state of my stage 4 body, I share today’s bodily shipping forecast.

Today, Sarah took a photo of my back. I look at the four little scars hidden within a field of moles and freckles. Two centimetres long, out of my field of vision, neatly ploughed. Half of my left lung was removed through these undramatic healed wounds. I feel no pain or discomfort now; this is simply the landscape of my body. But my ribcage and torso ache from east to west every afternoon. My team have no answers. Long covid, cancer treatment, after-effects of surgery, menopause, chronic fatigue, active cancer? Boring and tiring in equal measure.

I spread my right hand and place it under my left breast. This whole patch of land is hypersensitive, tingly due to nerves damaged during surgery. If Sarah touches me here, my body stiffens, rejects touch. I am immediately catapulted to a place of terror. I treat this handspan place with gentleness, my dormant space, protected by me alone.

Between my two breasts sits a tiny reminder of radiotherapy. A dark blue permanent dot. An exotic flower amongst the clover field of my dark brown moles. Blue, the colour of bruise. Of veins. Of tattoos. I have another on my back. Tiddly tattoos etched by the radiotherapist to give her a target for my treatment. Please zap here.

I am breathless every day. My breath is not fluid in response to movement. Despite yoga, breath work, qi gong, 10,000 steps or more each day. It is raggedy, staggery. I am short of breath if I go up the stairs, if I carry my granddaughter, if I attempt to walk and talk. Sitting here now, my breath is not silent. My automatic bodily systems were interrupted by illness and treatment. They have not reset. The waves, the tides of my body, my fluids, veins, bones, my muscles are out of harmony. A little nudge and my breathing, like a caterpillar poked by a child with a stick, curls up.

Coughing is part of the punctuation of my chatter. Sometimes it’s dry, sometimes it’s phlegmy. I cough mid-sentence, often if I laugh. Now and again, I cough when eating or drinking. My family go quiet. Am I coughing or choking? ‘Mum, do you need water?’

My thinness often leads people to say I look well. I am 57. We offspring of the sixties are the product of our age. The daughters of Twiggy, Kate Moss, of heroin chic. For many still, thinness is not just next to godliness. It is the definition of godessness. When people mention it, my heart sinks with sorrow, shame. Many have committed their lives to achieve this non-weightiness. But imagine I get sicker. Or get a virus and can’t eat. Or need a treatment that reduces my appetite. I have few reserves. It is not a welcome thinness. It is for many cancernauts a sign of our physical vulnerability. When will we disappear? What if we become invisible?

The miracle drug I take every day presents a side-dish to the main course above. My skin is dry, drinks up creams and oils then begs for more. My nails are crumbling and ridged. They split often. The top layer peels away like old paint. They must be kept short and cannot be used to pick, peel, open or scrape. Nails that no longer perform the role of nails. The skin at the edge becomes inflamed, sore, red. Tiny splits that look like paper cuts emerge. I tape my fingers when this happens.

More lovely neuropathy developed four years after my chemotherapy; my fingertips fizz with pins and needles. I am adjusting to this constant, odd sensation. Fingers and thumbs differentiate us from other mammals. Mine are a disaster zone. I am morphing into a skinny, coughing animal.

Six weeks ago my feet began to feel wet, damp, odd. Then burning, or maybe freezing? A bizarre sensation. Gosh, maybe I am shifting further down the evolutionary scale and developing fins? An MRI scan is booked to determine if any concerning activity in my brain is at the root of this oddness.

The beast that lies beneath. Fatigue. The ruler, dictator of all activity. Linked to breathing, breathlessness, coughs and aches. Fatigue reigns. The other symptoms are the rivers and streams that feed into its dark lake. Fatigue sneers at a plan to attend a party, put on a wash, go to physiotherapy and make dinner. Fatigue says ‘you get one, maximum two of those… take your pick’. Debilitating, annihilating, exhausting. The brain pulses with tiredness and panic. Fatigue is non-responsive to rest, a nap, a sleep. There are days when my animal self would choose to hibernate, burrow down, hide.

I have been watching The Americas, a wildlife documentary, with two-year-old little Maya in the last few days. I connect to the animal instinct to survive; to feed oneself and offspring; to hide from terror; to play. To prioritise always the herd, the pod, the litter. The magnificence of being alive in our bodies. The beauty of our bones.

I choose to do the things I can, not focus on what I cannot. Having stage 4 cancer doesn't define the limits of what’s possible, says Sir Chris Hoy, the Olympic cyclist. With this ringing in my ears, Sarah and I stared my fatigue down and registered for his Tour de 4 cycling fundraiser. It’s on September 7th in Glasgow which happens to be my 58th birthday. 37.5 miles, ooh la la! We aim to raise £10,000 for a lung cancer charity.

Crazy, thrilling, daunting. I am determined to complete.

Disability is not always visible. Nor is mental health struggle. Nor is cancer or countless other diseases. We never know what the person in front of us is carrying today beneath their cloak of normal. Kindness counts. Care for your loved ones. Care for yourself. And yes, please keep telling me I look well. And sometimes ask how I feel. Who knows, maybe after the cycle I’ll feel as good as I look!

Support, awareness and research for lung cancer: Roy Castle Lung Cancer Foundation

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