
Three young cancer survivors reflect on how their professional expertise helped them to navigate through and beyond treatment.
When Claire Shepherd was diagnosed with blood cancer at the age of 28, she had a surprisingly good understanding of what this meant at the molecular level. Ever since a work placement she had undertaken during her degree in medical biochemistry, sheâd been fascinated by surface plasmon resonance (SPR); a technique used in oncology (amongst other things) to select drugs capable of targeting cancer cells while minimizing damage to healthy ones. Claire had gone on to do a PhD in drug development, before becoming an application specialist, training scientists in how to use SPR machines. Short of being a qualified medical doctor, she could barely have been better placed to understand the finer details of her own condition, acute myeloid leukemia (AML), and the principles of how it would be treated.
Immediately after diagnosis Claire was glad to have this prior knowledge. âIt was helpful to know what AML was, and what was going on in my bone marrow,â she says, âbecause at the time, I was incredibly ill, and I was struggling to process information.â
Throughout her treatment, Claire had conversations with her doctors that sometimes left her family behind as they lacked the expertise she shared with her medical team. On the hematology ward, she chatted with nurses about new treatments they were being trained in, and felt excited to be invited onto a research trial for a drug that related directly to her own work. Biochemistry and medical research were everyday conversations for Claire, and made her feel âless a patient, more an equal.â Following a bone marrow biopsy, she was able to look at the slides with her own blood samples on them, and understood from her work how they would be analyzed in the lab. âI leaned on my professional skills,â she says âin the way I was communicating with my medical team.â
Communication was important, too, for Amy Morris, an ER nurse, who underwent treatment for breast cancer in her mid-30s. The experience brought home to her the importance of being able to advocate for yourself as a patient. âKnowing allows you control,â she tells me, âwhen you understand the system and youâre not getting the treatment you know you could have, you can say âno, this isnât OK.'â
Amyâs nursing background gave her the confidence to challenge the suggestion that two drugs would give equal pain relief, when she knew that the one sheâd been offered was simpler to administer, without a counter signature. On another occasion, she successfully pushed to be discharged from hospital, and felt her doctors trusted her to keep herself safe because of her being a nurse. And when she turned up at her own department in an emergency, she felt âenvelopedâ and safe in the hands of colleagues she had to entrust with her own care.
For others, a cancer diagnosis at a young age can be so far removed from everyday life that itâs much harder, initially, the find solace in their professional interests. Toby Peach was in the middle of a degree in community theatre when he was diagnosed with Hodgkinâs lymphoma at age 19. Asked about whether he found creativity to be therapeutic, he says âI closed off. I wasnât interested. I went three or four years not talking about my cancer experience.â It was only later that Toby started to connect the dots, making a solo theatre show âThe Eulogy of Toby Peachâ about his illness, which has since toured internationally. Toby has gone on to set up Beyond Arts, a community interest company which works with young people, using the arts to break down taboos around cancer. âArts gave me the tools to explore my experience and find the language to share it with others,â he says of the starting point for this work.
Claire, Amy and Toby all agree that finding (or creating) strong links between their work and their personal cancer diagnosis is a two-sided coin, with risks as well as rewards. Toby says that his solo show didnât always feel safe. âWhen you make something and share it, people share things back. I was suddenly propelled into a world where people were telling me things I wasnât mentally ready for and that led to some health anxiety. Now when we do projects, we always have a healthcare coach or a wellbeing practitioner available so that if anything comes up for the young people who are sharing their stories, they have someone to talk to.â
Amy describes a dilemma she faced during treatment, saying âI would try not to open a conversation with âHi, Iâm a nurse,â because that can put people on edge; itâs not fair on them. But itâs natural to talk about your life when youâre in hospital for hours having chemo.â Sometimes the people caring for her would make assumptions about her own understanding of the treatment process for her estrogen positive grade 3 invasive ductal carcinoma: âI got comments like âwell youâre a nurse so youâll know thisâ, when actually Iâm not trained in specific cancers. I only knew the basics from my training and about complications like neutropenia and sepsis which we see within the Emergency Department.â
Claire explains that while it was helpful to understand her disease at the molecular level, working as a biochemist can make it hard to escape, despite having finished treatment some time ago. âThere are some days when I just donât want to think about cancer,â she says, âbut often a presentation I need to watch will open with survival statistics, which can bring up unwanted emotions.â
She also found that studying scientific literature around her own disease too keenly after treatment fueled fears of a relapse. âI was quite worried that if there was any residual leukemia, it would start to come back. [Reading research papers] was good in some ways, but really I was looking for one that showed me that, with the really specific genetics of my leukemia, there would be a low chance of it coming back. Those werenât the statistics that I read. There is so much conflicting information out there and itâs easy to cherry pick information that paints the worst (or best) picture depending on your mood and level of anxiety.â
In the end, she says, what helped most was when her consultant gave her some papers that she felt were the most valid and relevant to Claireâs concerns. But the whole landscape of leukemia research is changing rapidly. âAs a scientist I know that papers are often a few years old because the peer review process takes time. Outcomes are improving all the time but when you read the out of date statistics, you can quickly send yourself down in a spiral. Statistics also reflect collective outcomes for a group of patients, rather than individual patientâs risk of relapse.â
The intersection of Claireâs biochemistry career and her illness is a unique coincidence. For Toby, on the other hand, having cancer so young has steered the direction of his creative work. He runs workshops for the Teenage Cancer Trust, hosts a podcast about life after cancer and is nearing the end of a three year funded project working with an 11-year-old to make a show in her own words about her brain tumor. If he hadnât had cancer, he thinks he would still be making interactive and playful work, but not with the same people. âI did a community theatre course and I didnât really know who my community was, but this community is one I want to support.â
While Toby is aware that the people he works with have a huge range of differing cancer experiences, itâs clear from our conversation that his lived experience is an important part of what he brings to his projects. âThereâs something about going through trauma at a young age that gives something a little bit different in terms of how I can engage with different groups. A passion.â
Amy, too, feels a sense of authenticity in some areas of her nursing having âbeen thereâ as a patient. Although she does not routinely disclose her cancer to patients, she says that when talking about pain relief, for example, âI have more truth in what Iâm saying. Itâs tough to be the reality of the pain. I understand that better now.â But she doesnât feel that being cared for has transformed her approach to caring for others in a cliched or romanticized way. If anything, she tells me, âcancer takes the shine off life; it makes you more realistic and aware of the fragility of life once something has challenged your own.â
Amy evidently has a new-found awareness of how tough the world can be, which will surely improve her ability to help others navigate it through her nursing role. She feels that good nursing is holistic, saying, âI try to take time to look at my patients; itâs not just medical.â And sheâs determined to have a positive impact by instilling in colleagues and students with whom she works a sense of the responsibility that healthcare professionals have. âNurses donât always realize the power they have to make people feel safe,â she says. âStudies have shown that patients can see healthcare workers in a position of authority, not partners in their care, and we nurses need to push to change this. Having cancer has made me more interested in promoting the patient experience.â
Claire, too, says that going through treatment has made her more appreciative of how her work ultimately benefits patients, and sparked interests in aspects of biochemistry that werenât there before: âI missed out on a therapeutic drug because it wasnât available at the right time for me, which has made me a lot more interested in the drug manufacturing side of things.â Toby, meanwhile, is currently working out how to deliver safe creative interactions remotely, for young cancer patients who find themselves more isolated than ever during the coronavirus pandemic. His aim for the future, alongside colleagues at Beyond Arts, is to prove the efficacy of using the arts to support young people whoâve experienced the trauma of cancer, and to disseminate and share the model so it can be offered around the UK. He also wants to make more work that speaks to the public. âWeâre not very good at talking about cancer. I want to make that world accessible, and make the conversation around cancer easier.â
What advice would they give to young people from similar professional backgrounds who find themselves facing a cancer diagnosis? Claire, wisely, is keen to stress that everyoneâs experience is personal to them, but advises other scientists to âresist the urge to spend too much time on PubMed,â (a popular online medical library resource); âmaybe ask your consultant to share a couple of the papers they feel are most relevant or cutting-edge right now. And donât be so distracted by the science that you forget to ask the basic questions.â Amy says that nurses should trust their intuition in order to balance the dual role of being both patient and qualified healthcare professional; â Sometimes you do have to sit back, but you can be your own advocate too, and ask questions.â
Toby reminds those who are artists by profession that creativity can serve a purpose even if itâs never shared with an audience. âGive yourself permission to explore, without the pressure of it needing to be for someone else,â he says; âWrite for yourself, draw for yourself, thatâs enough.â He talks about the young cancer community as one where âweâre all working out what it means to be a part of this community. Itâs important to keep trying to find our own language.â That language, is seems, must be richly textured to reflect the diversity of young people affected by cancer, and the many different starting points â professional and otherwise â from which they experience it.
source https://www.programage.com/news/The_Art__and_Science__of_Coping_with_Cancer_1614601828354898.html
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