What cancer were you diagnosed with?

Stage 4 Hodgkin's lymphoma

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What age were you diagnosed?

26

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What has helped you to thrive?

When first diagnosed I felt very alone with it all, the first two months I was in the hospital, I felt completely shut off from the world. But I have an amazing family and incredible friends, who were with me every step of the way. The hospital where I received treatment is a rural one, with an elderly population, so I didn't meet anyone my age who I could relate to. One day whilst sitting in a hospital bed feeling like my world was falling apart, another patient who had come in for a check-up, came to see me. He reached out to me when I needed it most and told me about the online cancer community. Since then these inspirational people and incredible charities have helped me in so many ways, they inspired me to thrive, and realise that with the power of the internet, I too can help others and reach out to them.

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Bethan's Story

In 2019 at the age of 26, I was diagnosed with Stage 4 Hodgkin’s lymphoma. I had affected lymph nodes in my chest, neck and shoulders as well as fluid around my heart and a 10cm tumour in my chest. I had shrunk to an exhausted size 4, going back and forth to the doctors for five years trying to get answers. By the point of diagnosis, I was on my knees. Unable to continue working my job on the front line for the NHS, frustrated at not being listened to but knowing something wasn’t right, constantly being told that I would be “more unwell” if it was anything serious. So after five years of going back and forth to the GP, my diagnosis came as somewhat of a relief. 

I was seen by a respiratory consultant following a chest x-ray when she gave me that look and handed me the shit sandwich that is cancer. I went home in a daze, where I existed in my own little bubble for a few days before being sent for further tests. I had a biopsy taken from a lymph node in my neck and was sent for an ECHO to see exactly how much fluid was around my heart. This is the moment when everything changed, laying in a darkened room, alone with my chest exposed while the person completing the ECHO went to get the on-call reg. I knew at this point something was very wrong.

I was admitted to CCU that day, where I remained strapped to a heart monitor, while other patients told me I was “too young” to be there (brought the average age down by a good 40 years). Waiting with anticipation while a haematologist and cardiologist worked out what to do with me!

My heart function was compromised by the fluid and I wasn’t stable enough to be discharged or strong enough to tolerate any chemotherapy. I had also been referred to a private fertility clinic to have my eggs preserved, so needed this completed before I started any chemo. Eventually, I was transferred to another hospital to have the fluid drained from around my heart under the guidance of CT. 500ml was drained from around my heart and I was discharged so I could complete my fertility treatment.

After being told I had “very juicy ovaries” I started to inject myself every day, to make my body produce more eggs. Catastrophically I was woken in the middle of the night with acute chest pain and was taken back to CCU. The heart drain had failed and the fluid had returned in just five days. I spent another month strapped to a heart monitor, with overwhelming anxiety that I would experience the chest pain again. My team eventually decided to treat me with chemo, in the hope that if my lymphatic system was working the fluid would drain on its own, this worked a treat but it meant I could not finish the fertility treatment before having chemo.

To begin with, I saw preserving my fertility as a formality, something I could do for my future self. It wasn’t until this choice was taken from me that I realised the magnitude of it, the grief I felt and still do is immense. This is something that I am still learning to cope with.

I was given six rounds of chemo, varying from accelerated BEACOPP-dac and ABVD. I had most of my treatment as an inpatient, due to infections, sepsis, problems caused by my heart drain, fluid overload and my bowel paralysing 3 times as a side effect of the chemo, resulting in a spell in ITU, lung drains, a lumbar puncture and blood transfusions. Missing family events, Christmas, New Year and my birthday. Living with my head in a sick bowl, with a sore mouth and just being generally exhausted and overwhelmed. I was well enough to have my last round of chemo as an outpatient and what a difference that made! I was able to spend time with my dogs, my friends and family, able to have a walk around the shops and just be me for a little while! This made it harder to go back and have more treatment knowing that this would make me feel rubbish again.

I lost my hair twice during chemo, it wasn’t any easier the second time around. I struggled to look in mirrors and hid my head from the world and myself. When it initially started to fall out my best friend would come and see me on CCU, she would wash and brush my hair while hiding clumps in her bra so I wouldn’t see. I made the decision to have my head shaved during one of my discharges. This somehow made it easier, I felt a little bit more in control of the situation. I was taking charge and I decided when I lost my hair, not cancer.

After 7 gruelling months, I was told that I was in remission during one of my hospital stays. This was at the start of COVID 19, I wasn’t allowed visitors so I received this news sitting on my own in a blue-tinted room by someone wearing full PPE. It felt so impersonal and not how I had imagined it at all. I thought I would have my family and friends with me, then be going out for a nice meal and popping a few corks. Instead, I was alone trying to process this news, frustrated that I didn’t feel happy about it. I felt cancer has taken so much from me and I was walking away with so much less than I had started with. My relationship had broken down, I had no hair, no eyebrows, no eyelashes, I was so deconditioned I could hardly walk and was left with lasting nerve damage from the heart drain, meaning I was unable to use my left arm. I felt a sense of abandonment from my medical team. 

Fast forward to the present day, recovery hasn’t been all sunshine and rainbows, I don’t particularly “feel better” like I had been told I would. But I can walk again, I slowly started to build up my strength. I had nerve blocks which meant I could use my left arm, I could dress myself again, get out of the bath all on my own and even make myself something to eat or a cup of tea, whenever I wanted one.

Being in lockdown has meant that my world has become very small and my support network has shrunk somewhat. Lockdown has however given me time, time for my hair, eyebrows and eyelashes to start growing back, time to start to process everything that has happened to me, with the support of my MacMillan councillor, time to build my strength and stamina, time to decide that I want to use my negative experiences to help others and be motivated by the kindness and consideration I was shown by people I met during my treatment. To help raise awareness of young people with cancer, blood cancers and lymphoma.