I’m Lizzie, and I have worked in the NHS as a Therapeutic Radiographer since 2011. In May 2022, I was diagnosed with Hodgkin Lymphoma. I was 29. Despite spending all my adult life working in an Oncology setting, I didn’t recognise the symptoms of blood cancer in myself.
My symptoms included weight loss, fatigue like no other, intense itching, unexplained bruising, chest pain, breathlessness, non-healing sores, insomnia, night sweats, a cough, and paresthesia. I also had a small palpable lymph node behind my collarbone. When I list my symptoms like this, I can’t believe I didn’t realise that something was wrong sooner! The thing is, it’s so easy to attribute these individual symptoms to something else. I have always suffered from eczema, and I attributed my itching to a flare up of this. I was also working full time, studying for an MSc part time, and exercising regularly – so I thought I was tired from all this. I didn’t see my symptoms as being connected until after I was diagnosed. Then it seemed obvious.
It was my other half who convinced me to make yet another GP appointment in April 2022 after being unable to compete at the British Swimming Championships or go to work. I had already been mis-diagnosed by GPs over the phone with COVID-19 vaccination reaction and pericarditis in the months prior. The GP I spoke to on this day asked me to come down to the surgery straight away to have further tests, including bloods, as she knew that something wasn’t right. I credit her with saving my life and I cannot thank her enough! So many young people are overlooked by their GP as we are seen as too young to have cancer, with sometimes devastating consequences. This needs to change nationwide.
After my blood tests came back deranged a day later, it was a whirlwind. I was sent to A&E at the local hospital (where I work) for further tests. Over the coming weeks I had further bloods tests, a chest x-ray, and a CT scan.
I was informally diagnosed with a Thymic Carcinoma – for which there is no recommended treatment pathway. I was on my own that day, and the doctor couldn’t answer any of my questions as I wasn’t yet under any speciality or department. I was in limbo, an anomaly to the system. The hardest thing was telling my family and closest friends. Even though I knew it wasn’t anyone’s fault, I felt as though I was letting them down by ruining their day too.
After an MDT I was admitted for a core needle biopsy of the mass in my chest. There was concern that as it was such a vascular structure, I would bleed heavily. I was also sent for a PET scan in a neighbouring county. This confirmed Stage 2BX Hodgkin Lymphoma and I was referred to the Haematology department. It’s strange to be relieved by a cancer diagnosis, but given my professional background, I knew what I had was likely to be treatable. My tumour was affecting my cardiovascular function so much that I started chemotherapy treatment within a week of meeting my Haematology consultant and having a central line fitted. As a result, there was no opportunity for fertility treatment.
I underwent 2 cycles of ABVD chemotherapy. I found this really hard-going and I was admitted to the hospital where I work with severe mucositis after my first dose. Following a further PET scan which showed only a disappointing partial response, I switched to escalated-BEACOPP chemotherapy. I had 4 rounds of this treatment and was twice admitted with neutropenic sepsis. However, in October 2022 I received the news that I had achieved remission and that I didn’t need any radiotherapy treatment. During these first months of remission, the thing I am struggling to come to terms with the most is my loss of fertility – because the choice has been stripped from me. I use Lymphoma Action’s Young Adults Support Group to meet others and discuss our experiences of treatment and remission. It’s good to be truly understood. What has struck me the most through this journey is how much of a ‘postcode’ lottery fertility treatment seems to be. It isn’t fair, but it should be.
Being treated by the Oncology department that I work in was a unique experience that has allowed me to gain a different perspective. Now I can continue in my career using my knowledge to help support others with cancer through their treatment and further improve the service I work within. I wouldn’t have got through my treatment without the kindness and support of my colleagues (as well as family & friends)!
In January 2023 I celebrated my 30th birthday, a huge milestone after a turbulent 2022. Later this year I am also looking forward to our postponed wedding as well as getting back into the pool. Going forward, I want to raise awareness of blood cancers in young people both through my work and my career.
