I was diagnosed with stage 4 Hodgkin’s Lymphoma last year at the ripe old age of 26.
After 5 years of unexplained weight loss, going back and forth to the GP, each time being reassured that I would be “more unwell if it was anything serious” or that my bloods would be “more deranged if it was cancer.” I had ECGs that did not show the extra half a litre of fluid around my heart and its function was compromised.
I took comfort from all the reassurances and continued with my normal life, working 12 hour shifts for the NHS, spending my days off too tired to do much.
By August 2019 I was on my knees, unable to continue working, unable to function, unable to eat or sleep. At this point I was visiting the GP most days, each time being sent for blood tests, each time the results were deranged. When one doctor decided to send me for a chest x-ray, to rule out clots in my lungs causing my CRP to go up and down like a seesaw.
The next day I was called, asking if I would attend the hospital that afternoon, for further tests and to see the respiratory consultant. I was advised on the phone to bring someone with me. At this point I knew that something had been found; it wasn’t all in my head.
Off I went to my local hospital, bricking it slightly but realised that I was finally going to be listened to and hopefully get some answers. I was sent to a CT of my chest, before being seen by a lovely respiratory consultant.
That’s when I was given that sympathetic, head to the side look and handed the shit sandwich that is cancer. Nothing can prepare you for a cancer diagnosis. I was told that I had Lymphoma nodes in my neck, chest, and shoulders as well as a tumour on my chest. I also had fluid around my heart. I left the hospital in a daze and existed in my own little bubble for the next week: full of phone calls, appointments, and further tests.
My next appointment was an echocardiogram to determine exactly how much fluid was around my heart. As I walked into the hospital I reassured my mum that, “this would be a nice easy one.” How quickly that mindfulness changed, laying in a darkened room alone, chest exposed. There was more fluid around my heart than they originally had thought, so I was admitted to CCU. I spent my first night in the bay right outside of the nurses station, with all the other patients staring at me and commenting that I was “too young” to be there.
Eventually the staff took pity on me and moved me into a side room, where I remained for the next month while the cardiologist and hematologist urged and argued about what they were going to do with me. I wasn’t well enough to start chemotherapy, in the end the decision was made to transfer me to a specialist hospital to have my heart drained under guidance of PET CT, in the hope that I would then be medically stable enough to complete fertility treatment.
I had my heart drained on a Sunday morning and was discharged home the following Monday. I attended a private clinic for fertility treatment and was given a course of injections to make me produce more eggs, before they could be removed and kept safe for a later date.
But before this could happen, I was blue lighted back to CCU: the fluid had re-accumulated around my heart after just 5 days, and I was not medically stable enough to attend the private clinic to complete the fertility treatment.
At the time I had seen the treatment as a formality, something for my future self. It wasn’t until the choice was taken away from me, that I realised the magnitude, the huge crushing loss. I am still working on coming to terms with it.
I was given six rounds of chemotherapy over 7 months, mostly as an inpatient. Due to recurrent infections and complications from my heart drain, I worked my way around the wards in the hospital, having stays in ITU, surgical wards, CCU, medical wards, and acute assessment units.
I was eventually strong enough to have my last two treatments as an outpatient and what a difference that made! I was able to be myself for a little while in-between, to catch up with friends, spend time with my dogs and family, and wander around the shops.
I lost my hair twice during treatment, and it wasn’t any easier the second time round. I had never appreciated how having hair had empowered me as a young woman until I lost it. My friend would visit me everyday, she would wash and brush my hair, hiding clumps in her bra so I would not see. In-between hospital admission, I made the decision to take back what little control that I could, by having my head shaved. Somehow this did make it slightly more bearable.
I struggled with hair loss. I hid my head from the world and myself. I would get very anxious about being discharged home where I would have to face myself in the mirror, only I didn’t see myself. I saw a defeated cancer patient. I wasn’t able to embrace my bold head. It is only now that it has started to grow back that I am able to not cover my head at home.
My body also went through a lot of changes; due to long hospital admissions and high doses of steroids my weight yo-yoed throughout. I am learning to be kind to myself and accept that my previous tiny size 4 frame wasn’t healthy or normal.
By the end of treatment I was exhausted, both physically and mentally. I have been lucky enough to have been assigned a Macmillan councillor, who has been a huge factor to my recovery.
During my last hospital admission, at the start of COVID-19, I was told that I am in remission. It wasn’t how I expected to get the news…I thought I would be surrounded by family and friends, not shut in a blue tinted room, being told by someone in a mask and gown. I felt frustrated that I didn’t feel happy, when I thought I should be. The fact is, 3 months on I am still processing the news and everything that happened in the last year. But each day I process a little bit more.
COVID has definitely impacted my recovery; it was a lot slower due to the limitations in activity level and not being able to get out and get on.
I am still waiting to celebrate finishing treatment, being in remission, Christmas, New Year’s and my birthday, what a party that is going to be!
I knew so little before being diagnosed about Lymphoma and the implications of cancer. I have found a lot of comfort in reading others’ stories and sharing my own. Even if it means one person stops and thinks, books that doctors appointment they have been meaning to, or if it just helps someone to not feel so alone. Cancer can be a lonely place and the best way to beat it is together.
By Bethan Goodey