Lizzie
Lizzie talks about her diagnosis of Hodgkin lymphoma and being treated by the team where she works as a Therapeutic Radiographer.
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 paraesthesia (pins and needles type sensation). When I list my symptoms like this, I can't believe I didn't realise that something was wrong sooner! It's so easy to attribute these individual symptoms to something else. I didn’t see my symptoms as being connected until after I was diagnosed. Then it seemed obvious.
As a lifelong competitive swimmer, I was due to compete at the British Swimming Championships in April 2022. In the weeks before this I began to feel unwell. The GP I spoke to over the phone asked me to come down to the surgery to have further tests. I credit her with saving my life!
After my blood tests came back abnormal a day later, it was a whirlwind. I was sent to the Ambulatory Emergency Care unit at the local hospital (where I also 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 currently 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.
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.
After an MDT I was admitted for a core needle biopsy of a 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. These tests 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, including once via blue lights! However, in October 2022 I received the news that I had achieved remission and that I didn’t need any radiotherapy treatment.
I used the Lymphoma Action Young Adults Support Group to meet others and discuss experiences.
Throughout my treatment I used 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. I would really encourage people to ask questions about fertility before treatment starts.
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 and I am loving being back in the pool again. Going forward, I want to raise awareness of blood cancers in young people as well as helping other people affected by lymphoma to understand and feel at ease about needing radiotherapy as part of their treatment plan.