Chemotherapy: not my cup of tea

Cancer treatment during lockdown; a host of annihilating side-effects; self-preservation

In my family, tea is the goddess we worship. In the 1970s, aged six, I drank my first milky, sugary tea from a plastic beaker. Warm, comforting, one of the adults’ rituals. To this day, when my mum returns home, whether from a tricky medical appointment or from ‘popping to the shops’, she declares, ‘let’s get the kettle on’. And we promptly do. Our blood contains red and white blood cells, platelets and tea. It’s our rocket fuel, our emergency go-to, our salve. At my sickest during treatment, I can drink not a drop. I cannot connect to the comfort, the reminder of family, of love.

I start my chemo(not-my-idea-of)therapy in November 2020. Four cycles of four weeks, drugs on day one and day eight. Ding, dong; round one. I arrive at the unit and weep. I am alone. My body and heart are pure fear. Nothing else. It takes eight hours to fill me with the ugly sister drugs cisplatin and vinorelbine, endless fluids, steroids. I leave, exhausted and initiated, not yet aware of the enormity of the day.

At home that night, my body is wracked, wrecked. In my half-asleep, hallucinatory state, I do not wake Sarah. I do not feel my emotions. I observe the unstoppable progress of the chemicals through my body. I feel the movement of it. I am neither scared nor anxious. Neither awake nor asleep. My muscles throb and twitch, my nervous system is on fire, in pain. I notice the noxious, relentless march of the cocktail through my actual nerves. Down the left arm, around my heart, to my right leg. The next morning, I am violently sick and return immediately to the oncology unit at the hospital. I visit many times in the months ahead with my health hullabaloo. Usually solo, dear god. I receive fluids and anti-sickness medication intravenously and am advised to eat tiny, individual trifles from Marks and Spencer. A few hours later, I walk down to meet Sarah, feel a never-before-experienced filling of nausea and proceed to vomit all over the disabled loo, the sink, my pink suede brogues, my clothes. Weeping and apologising, I ask for help. I ask for Sarah. Magically she appears. Her calm, smiling self was waiting outside due to covid restrictions. She wheelchairs me back to the ward. I sense this is no trifling matter. My body is revolting. The shoes, ruined.

I share here my individual response to drugs designed to save my life. I recently met a wonderful woman who received the same chemotherapy regime and was symptom-free until round three. Some people literally jog through treatment. My body, however, is hyper-sensitive. I am jingled and jangled, hard-edged like a Picasso portrait. I am now at the dark, sticky bottom of the cancer crater in our garden, alone and trapped. Sarah looks down, desperate to reach me.

Extreme, debilitating, all-consuming nausea continues. The signals from the mouth and nose that enable us to eat are immediately disabled chez Mel. Sarah makes dolly-sized food, teeny ice lollies, teaspoons of smoothie, none of which I can eat on my worst days. She leans over the edge of the crater and lowers down these morsels on a ribbon of hope and encouragement. In the chaos of 2am, we rush for the anti-sickness tablets to avoid more of the annihilating reaction but it’s impossible to halt the march. A shutdown of my digestive system leads to ten days of agonising, severe constipation; I end up in our local accident and emergency department in excruciating pain.

I detach, disassociate, check out of the horror. My reaction to the fear is to feel no fear. I am curious as to where I went. Where is the self during this experience? Where did I go? From the reconnected present, I suspect my emotional self shut down for urgent biological survival. A remarkable act of self-preservation.

On the eighth day of round one, we drive to receive the second dose. Tearfully, quietly I tell Sarah I don’t think I can tolerate it. I truly think it might kill me. And yet it might help me live. My body is barely coping, is truly at its limit of endurance. The drugs are insufferable. As we arrive, the nurse nonchalantly tells me I won’t be having an infusion of drugs today as my liver readings are too high. It is astonishing how my body forewarned me. It is bravely doing its best. But it has decided… no more.

One day Sarah remarks, ‘babe, it’s so good to hear your voice’. Apparently, I have barely spoken. I have not been ‘in’. Another time, I smile and I see in her face that this too is a first for a while. From time to time, tiny elements of myself float up like sparks from a bonfire. They are fleeting and in the midst of this ugliness, they are beautiful.

From rounds two to four, it is decided I will have a reduced dosage; 75% of the drugs. As my consultant cheerfully tells me, ‘it’s not supposed to kill you’. Round two: tachycardia (crazily racing heart caused by the drugs, the terror, the anxiety?) means yet again, I cannot have the second dose due to concerns about my heart. One of my veins is damaged by the chemotherapy line and I spend a terrifying morning waiting to find out if the drug has leaked into my tissue. If it has, I will need to go to another hospital for minor surgery. Round three: my white blood cell count is dangerously low and Sarah injects me every other day to avoid sepsis. To us both, this is torture; the opposite of love from my loving partner. It is too much, too much.

During this debacle, I can at times walk to the loo but no further. I am immobile yet I am deeply agitated, unrested. In the daytime, I snatch minutes of peace. Maybe listen to half a podcast and feel calmer. Mostly I lie in bed or on the sofa, trying to get through each minute of each hour and breathe in and out and wait for the next crash, bang of sickness, weakness. I sleep rarely, day or night. Is it possible for a body to survive this experience, for a person to remain intact?

On one visit to the hospital on a church-like quiet Sunday after Christmas with another distressing emergency, I weep and weep with the deepest sorrow and tell the duty doctor I am undone. I am no longer in constant detachment and have moments of deep anguish. I feel terminally, unshakeably unhappy. I realise that nobody here has asked how I feel, other than physically. There is little time for kindness during the pandemic, yet he is kind. Many staff have been seconded to the covid wards. Much like me, I suspect the frontline health workers are in survival mode. I am not smiling. Neither, it turns out, are they. His few words of kindness, his hand on my arm, his offer of anti-depressants and sleeping pills, his gentleness, his eyes looking actually at mine, are a vital gift. I need someone to say, ‘I see your pain, it is normal and terrible and I am sorry’.

And then, one cold day in February, I have my last infusion of drugs. I leave the hospital that I will return to next week to start radiotherapy. I sit in our crappy car and I wail, I rant and rage. I actually roar. I release sounds I have never heard before and I allow them to come. I feel the car fill with my vibrating sonic self. I am raw. I am another kind of human. I release four months of terror and pain and shut-down and undone-ness. I do not know what is next. I do not know yet about recovery, convalescence, rest, connection. All I know is this; it is over. And I am never doing this again. In the days and weeks ahead, I will fill and switch on my kettle, pour water into my favourite, mint green teapot. Add milk and drink from a china teacup. I will find a way back to a version of normal Mel. She is shouting and she is ready to come out.

About lung cancer in the United Kingdom

Lung cancer can affect any of us. Even those who have never smoked.

In 2022, 36,886 people were diagnosed with lung cancer.

Around 7000 are diagnosed with EGFR+ lung cancer each year.

Oncogene-driven lung cancers - like ALK, EGFR, RET, ROS1, KRAS and others are often diagnosed in younger people who may have no detectable risk factors. Some are as young as seventeen.

Find out more about lung cancer:

EGFR Positive UK

Oncogene Cancer Research

Roy Castle Lung Cancer Foundation