This evening, my Lent Talk for BBC Radio 4 has been broadcast. The script I read from was as follows:
I’m just posting a picture onto my Instagram feed, and as I have done several times over the past year or so, tagged it with #waitingroomfeet. As you might guess, this is a picture of my feet, in a waiting room – typically a hospital waiting room. In most of the waiting rooms that I’m in, I know that the majority of other people in this room have been affected by cancer, as I have, and I don’t want to breach their privacy in unwittingly capturing them on camera. I don’t know their individual stories or their prognoses, although I suspect they share many of my hopes and fears as we wait to see the surgeon, the oncologist, the radiologist, or any of the other myriad (of) specialists attempting to control the cancer that is seeking to take over our bodies.
Diagnosed with breast cancer in August 2017, and again with metastatic spinal cancer in January 2019, I am at once bored by the tedium of constant appointments, and a myriad of side-effects from the treatment – few of which really warrant complaints on their own. I am exhausted from the constant uncertainty of being involved in ‘the cancer journey’ – although I’d describe it more as a treadmill, and you’re not sure when the speed is going to ramp itself up! Another metaphor that occurs frequently, is that I feel as if I’ve been caught in the surf, as the waves pull backwards and forwards, and just as I thought I might be able to get onto the beach, along comes more bad news, and drags me back into the treatment maelstrom.
My mission on earth may not be as significant as Jesus’, but I see parallels with the Garden of Gethsemane in this cancer ‘journey’, especially as news of each diagnosis sinks in, and I want to rage against the cancer and all that it seems to threaten to take from me. As the gospel of Luke puts it, Jesus prayed to God: “Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine.” Some wonder if Jesus, as God, knew what was to come for him and therefore it ‘was easy’. Fully human, however, in his incarnation, he surely knew that he was to face not only physical torture, but spiritual and emotional challenges as he was separated from God.
I remember back to waiting for the first appointment at the hospital, when I nervously sat down, unsure what was happening, but thinking that I was too young, and with the reassurances from the GP that 90% of the time it’s “just a cyst, but we should check anyway”. I now know that in 2016, nearly 5000 women under 45, as I am, were diagnosed with breast cancer, and the Younger Breast Cancer Network I’m in on Facebook has over 3,000 members, with around 350 of us in the ‘inoperable/secondaries’ subgroup. I left the hospital several hours later, having undergone a physical examination, mammogram, and an ultrasound, with the words “suspicious looking cells” ringing in my ears. Confirmed the following week, I had my first experience of the significance of ‘the chairs’ (it doesn’t take three people to sit down to give you good news), and started to become familiar with what cancer patients know as “scanxiety”: the uncertainty that comes with waiting for scan results, and what that might mean for your life. As Gillian Straine writes in Cancer: A Pilgrim Companion, we have entered the ‘wilderness of cancer’ and ‘there is no security in home, or work, or routine, because cancer threatens it all’.
In an endorsement for Gillian’s book, Jenny Baker (author of Run For Your Life: How One Woman Ran Circles Around Breast Cancer) describes the sense of being thrown into a new world, with unknown rules, and no map to find your way through. As cancer patients, however, we have to get up to speed quickly, because treatment happens fast. At many stages throughout my cancer ‘experience’ I have felt unsettled, exhausted, and restless as the exact nature of the tumour is tested, examined and diagnosed, to determine the right treatment. Younger women typically have more aggressive cancers, so everything gets thrown at it: I was in surgery for a mastectomy three weeks after diagnosis, to be followed by 18 weeks of chemotherapy (with accompanying nausea), and 3 weeks of radiotherapy (with accompanying fatigue).
With the most recent diagnosis, I took comfort from Jesus’ experience. I took time to grieve and struggle with what was happening in my body, but eventually my mind surfaces, prepared to face the difficulties ahead. Both diagnoses have, in some ways, come as a form of relief, because at least ‘we have a plan’. Clearly I would much rather not have cancer, nor have to deal with the uncertainty of what may be coming with each new treatment. Even the oncologists can’t predict exactly how each individual will respond to the treatments. As I sign consent forms, with the first potential side effect often listed as death, I am actually often following a well-trodden path. The standard phrase I heard before I started my treatment for primary cancer, was something along the lines of ‘the treatment is rubbish, but it’s doable’, involving the physical trauma of the knife, toxic chemotherapy drugs, and potential radiation burns… and will my veins allow a cannula to be inserted? Choosing to have a mastectomy felt very easy, choosing whether to try and preserve my hair with the cold cap felt like a ridiculously big emotional decision, affecting a visible marker of my identity!
Much of the thinking for this piece was done on World Cancer Day (4 February each year). Under two years ago I knew very little about cancer, and didn’t realise how many people are ‘living with and beyond’ cancer. At present some estimate that 1 in every 2 will get cancer at some point in their life, although as Susan Sontag wrote in Illness as Metaphor, in the 19th century, tuberculosis held the same fear that cancer now does, until it became totally curable. New treatments are constantly being developed: one of mine was only made available four months ago. A recent ‘You, Me and the Big C’ podcast focused on ‘hope’, and the new treatments being developed, and I thank God for those medical staff with skill, expertise persistence, and vision. Whilst medical staff are wary about us spending too much time with ‘Dr Google’, or becoming panicked by statistics, media representations do not always help. Headlines may be improving, but are often accompanied by images of bald and frail people looking close to death in a hospital bed. Those representations are part of what I have sought to challenge by sharing my cancer experience via blogs and social media, which also enables me to keep friends and family informed, and to ask for practical help – and that reminds me, that like the grace I believe we experience from Jesus – I have accepted time, gifts, and support from others at a level that I can never help to repay, though I hope to be able to pay (some of) it forward. Through my work, I have always encouraged people to share the realities of their life, mixing vulnerability with wisdom, employing hashtags such as #InstaImperfect. For public online conversations, I can now hashtag my shares with #BusyLivingWithMets or #WhatCancerLooksLike.
Cancer treatment requires a huge amount of flexibility, the body can react in unexpected ways, and the machinery can break down. As Gillian Straine writes, cancer is a journey defined by ‘loss, uncertainty, and fear’: our life shrinks to focus upon healing the body, handing it over to the experts. Despite following Tanya Marlow and her work on God and suffering, we don’t fully understand the difficulties until we undergo them. On social media, I’m able to join private conversations with others, some of whom are ahead and able to give advice; others who are alongside with whom I can share experiences, and others coming behind whom I can help. Within these groups I know that I’ve found a tribe of people who understand, and this helps manage worries about what is concerning, and what is seen as ‘normal’. Whilst such camaraderie is powerful and encouraging, the obvious drawback of being in such groups is encapsulated in the fact that on the day of my first chemo, it was the funeral of one of my new friends. The uncertainty of whether the cancer might return or progress, can make it challenging to watch others experiencing this! There is space, however, for the very black sense of humour that many cancer patients develop!
As we see, cancer impacts our identity, both individually and communally. When I was first diagnosed with cancer, I felt that I was a strong, independent woman. I was right in the middle of planning for a new term of teaching at Manchester Metropolitan University, I had public speaking engagements in planning, and all of this had to go on the shelf. Suddenly I was no longer ‘Bex’, with the name ‘Rebecca Lewis’ called out in waiting rooms. For me, the knowledge that Jesus is alongside us, offering hope in the darkest of places, can at times feel very academic, at other times gives hope. Last year, reading Day by Day with God, the author Rev Dr Sara Batts suggested reading the Psalms of lament, including Psalm 22, where ‘My God, my God, why have you forsaken me?’ echoes the abandonment that Jesus felt. I am very aware of the prayers of others, as it can be difficult at times to pray on my own behalf. When Jesus went to pray in the Garden of Gethsemane, he felt alone, abandoned and vulnerable. His disciples, and our friends, don’t always know what to do for the best! Cancer can feel very lonely, especially when your immune system is compromised, and friends who have contracted viruses are unable to make their promised visits.
Psychologist Peter Harvey, in ‘After the Treatment Finishes’ talks about learning to live when the treatment has made you feel worse than the cancer itself. As my counsellor said, ‘you couldn’t plan for cancer, yet here you are’. Cancer has affected my fertility (I was put through the menopause in eight weeks), my finances (although I’ve kept my main job, I waver between making the most of living, and preparing in case my health deteriorates), and my friendships (some positively, some negatively – noting I would rather people said the wrong thing to me, than nothing at all). For my faith, some days it feels stronger, holding on in the face of uncertainty and doubt, other times I struggle with very human fears and frustrations: I’m learning to work within the limitations of my body, and a restless lack of control over life has evidenced itself in ‘nesting’: decluttering and decorating my house.
Seeing a sign on Manchester Town Hall saying that it reopens in 2024, I wonder if I’ll still be here to see it. At an event last year at the Christie, I chose ‘Unsettling’ as the one word to summarise my experience with cancer, with spinal scans underway. Secondary cancer is often underfunded, so metastatic cancer offers fears of a foreshortened life. Within our culture we’re not very good at engaging with death. Andrew Graystone, who’s also been through cancer, said at Greenbelt Festival, ‘I am going to die as many times as the rest of you: once’. Kathryn Mannix’s recent book With the end in mind, encourages us to think about death as the end of uncertainty: if we know what we want our legacy to be, then we can get on with the business of living with a purpose.
I have long described myself on social media as a ‘life explorer’, and I have in many ways been given another chance at life, to think about what I value, and how I want to make a difference in the world. I am re-learning to find ‘joy in the ordinary’, taking it one day, and one appointment at a time, recognising that although I am forever changed by my cancer, I am not defined by it.
Parapharasing a line from the Gospel of Matthew: ‘Tomorrow is never promised. Do not worry’.
Listen here up to 29 days after broadcast:
Or listen here where I captured it with Audacity the day after (not quite such good quality):
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.