Back in 2022, I was busy working as a Claims Handling Administrator, seeing friends and generally living life like any other 21-year-old. Looking back, I didn’t feel right for most of that year but I couldn’t work out why, so I just ignored it and hoped things would get better. I felt lethargic, weak and had no energy. I was young and had no major symptoms that were red flags, so I thought perhaps it was normal to feel this way.
In September of that year, I found a lump on my collarbone. While I didn’t see this as a concern at the time and thought nothing of it as it was small and moveable, I was prompted to go to the doctor by my mum who used to say all lumps should be checked no matter where they are. Being young and naïve, I resented booking an appointment at my GP surgery, but I went to have my lump looked at by a specialist nurse. As I was not experiencing any major symptoms that were a cause for concern at this point, it was suggested it could be a lipoma (a non-cancerous fatty lump of tissue). I carried on with life and just kept an eye on the lump in case it got bigger.
As time went on, I started to develop further symptoms which were picked up by the people around me. For example, they noticed I became out of breath walking up the stairs, even though I was keeping fit and active by going to the gym. I was also extremely fatigued - falling asleep at 8pm on a Friday and Saturday night and then napping all day Sunday and even after all that sleep I was still so tired. Again, I thought this was normal and just me needing to catch up with sleep from the working week. I started to get a cough whenever I was lying down, especially in the morning when I would wake up, but I thought this was the start of a cold or some type of minor illness.
When I found another lump two months later on the side of my neck, I went back to my doctor. After numerous blood tests, an ultrasound on my neck, a lymph node biopsy and a PET scan I received my diagnosis of stage 3 Hodgkin lymphoma in January 2023 and by this time I was experiencing most of the classic symptoms of lymphoma, including night sweats, weight loss and unexplained fevers.
After an initial diagnosis of Stage 3 Hodgkin lymphoma in February 2023, I started 6 months of ABVD chemotherapy treatment, following a round of fertility preservation. The treatment was really challenging but felt manageable at the time as within five days my symptoms started to slowly fade before the next round quickly come back around.
Just as my life resumed to normal again, in October 2023 I felt a pea-sized lump on my neck. I went back to the consultant who thought it was nothing to worry about and as I was due to have another scan anyway, we kind of just left things at that and the initial panic subsided.
After two MRI scans within 6 months of each other, which was to originally check on my Thymus gland, they confirmed the scans showed mediastinal lymphadenopathy, and they were almost certain the lymphoma had returned. I needed to have a biopsy so that they could confirm the type, which came back as Hodgkin lymphoma again, but this time luckily it was stage 2.
I felt so angry, frustrated and devastated to be doing it all again.
In all honestly, I wasn’t completely surprised by this as I had been having chest pains for a while but put it down to after affects of chemo, but that didn’t make hearing the second diagnosis any easier. I was so angry, frustrated and devastated to be doing it all again. I had been told that the chances of the lymphoma coming back were low, which left me questioning why this was happening to me again.
My medical team started talking about a different chemotherapy regimen and an autologous stem cell transplant, using my own stem cells. I didn’t know anything about stem cell transplants and struggled to get my head around it.
Having had ABVD the first time, this time I was to be treated with GDP chemotherapy (gemcitabine, dexamethasone and cisplatin). This would then be followed by an autologous stem cell transplant. GDP ended up being much worse than ABVD for me. I experienced more side effects this time round including tinnitus, sickness and PICC line thrombosis.
I was dreading the transplant having been told the conditioning therapy prior was high intensity and came with an even longer list of potential side effects. Fortunately, the transplant went well and I managed to avoid any infections, meaning I could leave the hospital on day +10.
No one prepares you for how hard it is mentally.
No-one prepares you for how hard it is mentally. Being in the hospital and having to be in isolation was more difficult than I ever imagined or prepared for. I was so focused on what my physical wellbeing would be like it didn’t ever leave time to think about my mental wellbeing. I was in a room alone with nothing to focus on other than the hard time I was facing and how much I missed my normal everyday routine.
Once I returned home, I quickly realised how weak I was after the treatment. I didn’t have the energy to climb the stairs, unpack my case or even shower at times. I didn’t spend time around anyone other than my family and anything like going to the shops or going out were unthinkable in the early days.
I read the Lymphoma Action Facebook Support Group everyday whilst I was in hospital, desperately trying to relate to others who had been through this process and trying to find out on what days I would feel better, how people coped with their side effects and what tips I could take. I clung on to the fact that people reiterated how it was tough but it does get better.
My life wasn't over - it was only on hold.
My medical team had suggested it would take around six months to improve and slowly get back to feeling like myself again. At 6 months post transplant, I can say it really does get better and you will be able to get through this.
I wish I could go back to both days of diagnosis when my world fell apart and show myself that the journey is hard and challenging but I can do it and I will get through it with the help of everyone around me. My life wasn’t over – it was only on hold.
I had never heard of Lymphoma before being diagnosed let alone know it was type of blood cancer. I strongly believe there needs to be more awareness about lymphoma and what symptoms to look out for. This is why a charity like Lymphoma Action is so important.
It’s a scary journey with ups and downs but I hope in sharing my story I can help other young people relate if they are going through something similar and help others recognise symptoms and encourage them to get checked and trust their gut when something doesn’t feel right.