Connection, courage and cancer: A diagnosis of lymphoma in the time of COVID
Funding information: Olivia Newton-John Cancer Wellness and Research Centre: Supportive Care Research PhD scholarship
‘Don't worry, I'm not contagious, it's the cancer!’ a young man, diagnosed with Hodgkin lymphoma 4 days prior, reassures me after shielding the aerosol spray from his cough (induced by a 6 cm mediastinal mass) with his sweater. We share a small, enclosed clinic room where I am collecting baseline study assessments for a longitudinal study exploring cancer-related cognitive impairment in patients with newly diagnosed aggressive lymphoma.
The irony is striking. Susan Sontag (2009) described cancer as a secret invader, one of the most feared of all diseases, and yet, in this interaction, a cancer-related cough was offered as an explanation to reassure and dispel risk and concern. Such has been the impact of COVID-19. Coupled with his potentially life-limiting diagnosis, the young man was aware that his lymphoma put him at an increased risk of contracting COVID-19 and of experiencing severe complications or death should he contract the virus. He recognised the critical importance of minimising his exposure to COVID-19.
This letter shares observations about how the pandemic compounded the emotional burden of a diagnosis of aggressive lymphoma among a cohort of patients participating in a longitudinal study of cognitive impairment.
One woman, anxious about acquiring COVID while at the hospital, attended her study assessment meeting wearing a mask and gloves and applied hand sanitiser regularly during our time together. ‘I have been crying this morning’, she said. ‘I heard on the radio that 150,000 Australians will die, and I may be one of them’, portraying she is more fearful of her fate from contracting COVID than her recent life-threatening diagnosis of aggressive lymphoma.
In 2020, the COVID-19 pandemic forced Melbourne Australia into two periods of hard lockdown, the second lasting 112 days, when daily cases peaked at 723. To reduce risk of exposure for vulnerable, immunocompromised patients, our state-based Department of Health imposed a ban on visitors to hospitals. Patients suddenly found themselves having to attend for appointments and treatments on their own, and although a reasonable decision, its impact was far reaching. A newly diagnosed 60-year-old woman attending imaging appointments stressed ‘you can't take anyone with you. You are alone. I'm always alone’. The impact of being or feeling alone in the context of serious illness was palpable ‘no one can visit me and I'm so alone. I cry a lot about that. I'm going through this all alone, it's so big, the cancer and the whole isolation’. At a time when connectivity with others was paramount, people were, albeit unavoidably, deprived of a fundamental human need for love and support at critical events such as the first day of treatment, a follow up scan or when bad news had to be given. For decades, evidence has shown how important it is that patients bring support people with them to appointments and treatment whenever possible. But as COVID cases grew in Melbourne, this was not possible. For one young patient used to being with her mum for 12 h a day, she was suddenly alone: ‘I'm going through this alone, text and phone calls are not the same. There's no touch, no form of nurturing’.
Hospital processes were thrown into a state of flux, responding to new government announcements and restrictions as the pandemic escalated. Participants in the study suddenly found themselves being sent to a dedicated suspected COVID (SCOVID) ward if they presented with disease or treatment-related fevers until a negative swab result was returned. This was a considerable and frightening change from being admitted to a familiar haematology ward where patients felt safe and known. ‘Due to COVID, I spent 12 hours in Emergency, and 24 hours in a SCOVID ward awaiting my swab result, it was totally exhausting and isolating!’
COVID imposed a number of physical and emotional barriers creating a loss of connectivity and isolation. Participants were required to wear masks to reduce their risk, placing a physical barrier between them and other masked individuals. Facing cancer and treatment among their heightened vulnerability placed them is a state of isolation and loneliness as described by a middle-aged woman mid-treatment, ‘you've heard of chemotherapy-buddies, not for me … I was all alone!’
In addition to the deep-seated fear of contracting COVID, its potential to disrupt their ability to attend for life-saving cancer treatment added considerable distress and anxiety at a time when people were already trying to adjust to a life-threatening diagnosis. Some were fearful that they would be stopped from entering the cancer centre by staff carrying out COVID screening at the entrance to the hospital if they had a temperature, ‘they may not let me in!’
Since March 2020, Melbourne has been under six hard lockdowns and has spent more time under lockdown than any city in the world—totalling 262 days. With 88% of Australians now fully vaccinated against COVID, Australia is one of the most highly vaccinated countries in the world. In Victoria, our vaccination status and ongoing adherence to wearing masks has created a sense of confidence with some level of normality retuning to day-to-day life. But with the emergence of the omicron variant, fear, anxiety and a sense of uncertainty has returned. This is palpable among people most at risk of becoming severely unwell as a consequence of contracting the virus, and for people diagnosed and living with aggressive lymphoma, this fear and uncertainty is compounded by an uncertainty about the effectiveness of vaccinations for them. For people living with aggressive lymphoma, 2022 looks to be another challenging year.
For those already impacted by a diagnosis that situates them in the ‘night-side of life’ (Sontag, 2009), COVID-19 has and continues to demand of people diagnosed with aggressive lymphoma a courage and fortitude to respond not only to the demands of their cancer, but to do so distanced from the connectivity so essential to the human spirit.
ACKNOWLEDGEMENT
This was funded by Olivia Newton-John Cancer Wellness and Research Centre: Supportive Care Research PhD scholarship.
CONFLICT OF INTEREST
The author declares no competing interests.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.