World Cancer Day is February 4th. This piece is dedicated to the carers and tribe of family and friends who help us cancernauts feel safe. Thank you for helping us live a good life.
If I close my eyes and rewind to the cancery waiting room life in the summer of 2020, it is Sarah whose face I see. Not my own. I can’t see me. Her blue eyes filled with tears, compassion or fear. Her always warm skin as she holds always-freezing me when I shake and wail or am numb and wordless. Her golden, curly hair. The same hair she had before the meteor smashed into our lives. The solace of knowing she is unchanged, that her body is not quivered by mutating cells.
She is the iron lung, the steadying external breath when my breathing deregulates, when my body fails me that surreal summer. She anchors me to the moment and the moment is all I can endure. She holds me as tightly as a person can be held in her heart. In her love for me, I am safe.
I am detached from my own eyes, hair, body, lungs, blood vessels. Sarah’s body becomes an acceptable version of what a body is, of my body. I am desperate, I am tethered, I am absent and yet wholly dependent on her right now, right here.
She mirrors the land of a body we trust and know. A body that is not about to have part of itself removed.
Sarah cares for me. About me. She loves me as I love and care for her. Yet here we are in a new dynamic where the word care is more than heart. She becomes the person who retells the doctor’s words because I am annihilated with shock. The person who moves the minutes of the day along as if all is safe, controllable. Who packs the car with unnecessary amounts of yoga mats and blocks, green juice powder, supplements, books, towels to wrap me in normality by the sea whilst we wait for my results.
It would be easy and amusing to call her Sarah the Carer. But in those early days, her spirit and presence and love are the oxygen and blood that maintain a semblance of normal to me. It is far from funny.
September 2020. Two weeks after diagnosis. My 53rd birthday. One day before my surgery. My precious parents, who I have not seen since March, come to our home to create some version of a birthday party with two of my children. The windows wide open despite the autumn breeze. My dad in the armchair, my mum on a stool. Everyone two metres from everyone else. All quietly worried that either my dad who was waiting for heart surgery or me would get covid. Masks, cardigans to keep us warm. A party banner. Birthday cake. Covid tests. Thoughtful gifts that might soothe and be of comfort in hospital. With each unveiling of extra specially wrapped presents, more weeping. Tears. No hugs. Walking through the rehearsal for a birthday with all the props and players in unnatural positions. But still, love fills the space when the terror threatens to edge in. I even dance. There’s a photo of me dancing.
The next day, I am in a room of my own at one of London’s top hospitals. I don’t know why I am alone and not in a ward. I am crying. I am utterly regressed, terrified. I need Sarah there to reflect back familiarity, safety and love. I walk down, I think I walk, to the operating room, to the underworld. Shiny metal, harshest of lighting. I am weeping with the horror of it. I have no choice but to be here. I want to escape. I want to survive. The anaesthetist looks me in the eyes. I feel she too might cry. I feel her heart under the metal and she holds me and speaks kind words whilst I sit on the operating table and shake.
Sarah and I didn’t fly together during my treatment. Now and again, out of the absolute blue, a memory lands, ta-da, often in a technicolour reel. Curiously, maybe a memory of Sarah I didn't witness. As if my soul is trying to colour in the black and white, metallic monstrosity of the experience. To connect us together in the trauma, to each other.
Sarah waits all day in the beautiful, fountained square in the middle of the hospital grounds while half my lung is removed. She chants quietly to herself. I imagine her looking up and up at the walls and windows and beaming energy at me. She breathes as calmly as she can, she breathes as if I am in her arms and she is holding me together and alive. I see her as clearly as if I was with her. Maybe via magic or the telepathic energy of love, I was with her in the square? Maybe my spirit saw and felt her pacing and chanting and praying for me?
Hours and hours later, Sarah leaves the hospital grounds. I begin to open my eyes, to know where I am, to sense the tangle of wires and tubes, to manage to ask a nurse to pass my phone. I know Sarah and my tribe will be desperate for words. And maybe nine hours after Sarah left my sobbing self at the entrance, I send one yellow heart. Sarah weeps and weeps and sobs and sobs and sends one yellow heart back to me. We are connected back together again. Although we don’t see each other for four days.
She spends days waiting for me outside the hospital that winter. And my warm-bodied Sarah is sometimes freezing. My heart aches even now to feel her cold and waiting. To not be allowed in the castle walls is so cruel.
November 2020: I am on the fourth floor having the toxic sister drugs, or steroids, or fluids or antibiotics dripped into my blood. Too often, I am in the cancer emergency ward with acute happenings in my heart, liver, blood, colon. Waiting to find out if I will need another scan. Waiting for the doctor to give their opinion. Waiting for the latest drug to help my body recover from the effects of the last drug. Waiting in confusion, in fear. I need her face, her body, her presence to interpret and absorb the reality around me and present it back as endurable.
In cancerland, co-pilots can reflect back a sense that all is well. Particularly when it patently is not.
From 2022, Sarah and I go hand in hand to appointments. We are upright, healthy. I am jolly with staff; please like me, please look after me. I am a person with cancer, not a patient. Sarah and I are inappropriately happy at times. Once, to pass the time, we stand up and act out different animals to one other with no sound effects allowed. We find this hilarious. Other times, I am wracked with a dread in the middle of my bones. Sometimes I weep at good news. I am aware that not everyone is so lucky.
By the end of most afternoons, I am exhausted and aching. Sarah, loving Sarah, looks after me with endless kindness. Tea made with love is my favourite kind of tea. If it is not quite to madam’s liking, Sarah brings up a dash more milk. We joke that I am Lady Melanie. Would madam like the pink or yellow mug this morning? Maybe we both know life can change in an instant? Maybe we are making up for all the shocking days I managed without her? When she managed without caring for me.
Sarah and I are not joined at the hip. Hospital is not all we do. But when I am wild with panic or grief, we are joined at the lung, at the heart. When planet cancer turns us upside down, we help each other turn the downside up.
This much I know. When the filthy water of fear sloshes around my ankles, when I feel I might drown in the murk, when I am full of grief, of sorrow for the loss of fellow cancernauts, when I am halted by fatigue, she takes me to higher ground. To safety. We wait for the floodwater to settle.
She knows the depth of the trauma, the width of the anxiety.
We are in this cancer universe as a two. We face the unimaginable together with our Greek chorus cheering us on. There may, or may not, be grave peril ahead. For now, we keep on with our ordinary, extraordinary lives.
Today there are 3.5 million people living with cancer in the United Kingdom.
I hope there are 3.5 million co-pilots helping them navigate their way.
Carrying their hearts.
i carry your heart with me by ee cummings
i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart (i carry it in my heart)
More writing about cancer on Substack:
Victoria writes Carer Mentor and offers inspiration and empathy for caregivers
Emma Vivian writes Am I Cured Yet? about her experience of breast cancer
Kristina Adams Waldorf, MD writes After He Said Cancer about her husband’s breast cancer diagnosis
Jeannie Moloo writes A Full Plate about the gaps in cancer care and her late husband’s experience
Jennifer Garam writes Rebuilding about her recovery from ovarian cancer
Janine Cutting writes New Found Life about her recovery from colo-rectal cancer
Another beautiful, touching piece from the pen of the master. Your deep love and affection for one another brings me tears today.
Mel and Sarah you are loved.
Made me cry Mel. I don’t think I ever told you but when you were in Barts I went to the entrance one night and stood outside too. There were other people there, looking up at the windows starting through the glass doors. Probably all there for someone. Covid was an absolute fucker, four days only with strangers at that time, I can’t imagine it. I love your substack. Love to you and to Sarah x