The EGFR+ UK Community: Advice, Support & the Business of Living

Mel Erwin, living with Stage IV EGFR+ lung cancer

As a member of our beautiful, ever-growing online community, I am curious as to how we share information and support each other and our loved ones; how we build precious, caring interactions. How, in fact, we help one another live well. So, with a pencil, a scientific tally system and an app that calculates percentages (because… maths), I categorised the last 300 posts on our fabulous Facebook group and found…

Percentage of posts from members:

o Individual members’ status update, positive and hopeful: 5%

o Individual members’ status update, leaning towards the worried or fearful: 9%

o Queries on side effects: 9%

o News, general information-sharing: 15%

o Questions about diagnosis, scans, treatment, procedures: 18%

o The fun, frivolous, joyful and downright silly: 22%.

Percentage of posts from charity trustees or administration:

o General information and signposting to events: 10%

o Welcome to new members: 12%.

All hail the frothy, sunny posts, a clear winner at almost a quarter. How we love a meme, a photo of a holiday, wedding or new grandchild or some jolly nonsense to distract us over our cornflakes. A window into each other’s normal lives. And normal is what we seek. For many, not a bucket list of global cities to tick off (although this too is divine) but a cup of tea with friends. A cuddle with a new puppy or baby; a picture of a church bathed in sunlight or a stunning flower; a forest that inspires awe and wonder. For that moment, we feel the universe around us, not just our immediate difficulty or discomfort.

Many posts and comments overlap in tone and support. Positive status updates include a reference to a troubling side effect. Worried updates often contain a shard of optimism within the darkness of fear. Our state is not binary. We are living between the grey and the rose pink; not the black and white.

The amount of lived experience is phenomenal. Between us, we have a wealth of first-hand, painfully gained knowledge. We are not doctors, consultants, or nurses, but we have insight into what it feels like to go through PET, CT and MRI scans, x-rays, surgical treatment, chemo- and radiotherapy, invasive procedures. We know about the potential side effects of targeted therapy drugs. We understand scanxiety and the other anguish-making choices we need to make. We know. And if we don’t, you can bet your bottom dollar someone will rock up online who does.

Crucially, we do not provide expert, medical advice to our fellows. This is the role of oncology teams who prescribe a cabinet of drugs for sickness, infection, aches, pains and soreness, who monitor our bloods, hearts, lungs and brains. We, however, offer a chorus to the events happening on the stage of each other’s medical lives. We witness and contribute our perspective. We suggest often non-pharmaceutical options to help with nasty side effects. Have you considered your diet? Does dairy seem to affect your gastro-intestinal difficulties? Sore eyes? Here’s the link to the drops I use. Cramps? I hear you, have you tried magnesium spray? Crumbling nails? Me too, I have tried every lotion under the sun and eventually went to the chiropodist. Sore mouth? Ouch, yes dreadful. I had this for six weeks and then it passed. Maybe we recommend a breathing technique or send information about a wonder wig. There is much talk of hydration. I for one need a daily reminder to drink water, herbal tea, anything frankly to help combat the dry skin, eyes, hair and nails we can suffer from.

Seven weeks ago, I was due to start taking osimertinib and turned to the community with my fears. Previously, I had read posts and comments quietly from the wings. Not yet ready to join the stage. The group offers this possibility. To sit and watch, to absorb the action and connection. Sometimes we are too worn down, too frightened or shocked to participate. My chemotherapy regime was annihilating. I imagined targeted therapy might elastic-band me back to that hell. I found wise souls. Kind, honest folk who reassured and gave me the confidence I needed to take the medication that so many of us are on. There is an overwhelming amount of compassion and love expressed and received in our virtual home.

The toll on our emotional and mental wellbeing can be of cosmic proportion. A side effect of the side effects, of the whole cancer fiasco. The recent EGFR+ UK patient survey found that one in three of us experience clinically significant anxiety. Most of us suffer from scanxiety. Sometimes, one of us is on our knees with terror and confusion and reaches out with shaky words. Desperate. Newly discovered metastases perhaps and the prospect of a terrifying intervention. A fairy godperson lands in the comments box with soothing, calm, gentle words. I too had this. It was nowhere near as frightening as I had imagined. I am so much better now. You will get through this. You will be okay. We are here for you. Fairy tale gold dust sprinkled on our pained selves. We check back in with one another; someone is often on night watch duty, ready to comfort.

Sometimes we lose people. A sombre, painful reminder of the enormous implications of our disease. We gather closer to each other and to the loved ones of the person. We are still. We are quiet. We wave a solemn, loving goodbye. Too soon, too soon.

How do I see our community? I imagine a virtual circle, a big one, of souls from all corners of the kingdom. An inclusive, diverse representation of humanity. We are in a pasture. The sun shines warmly on us just before dusk on a September eve. Bees buzz, a quiet hum. The scent of a British summer. We look to the neighbour on our left, the one on our right. We say not a word. We smile. We reach out and hold hands. We nod and smile again. We look up. Smile once more. And we say, ‘We’ve got this’. And we have.

We feel true gratitude to the EGFR+ UK team who offer their time voluntarily to keep the cast and crew of this show on the road. They stand in the middle of our circle of patients

and loved ones and must also have gloomy and difficult days. I imagine us showing our appreciation as we release an imaginary flock of white balloons that drift and bounce above us. Our connection soothes our souls.