Before my lymphoma diagnosis, I was working full-time as a Personal Assistant and loved going to the theatre and cinema and eating out. My husband and I enjoyed walking a lot and I also did YouTube exercise classes three times a week – I had middle-age spread I was desperate to shift!
Back in Christmas 2023, I was lying in bed and it felt like a cherry had landed in the middle of the crown of my head and popped (it’s the best analogy I could find then and I still haven’t bettered it). Whist it was strange, I calmed myself and went to sleep, but a couple of days later I found a sizeable dip in my skull which hadn’t been there before. I called the GP, who said it wasn’t urgent, but I should arrange a regular face-to-face appointment. At that appointment, the GP said it would be useful to have an MRI scan, but I wasn't referred to the correct specialist at the hospital (I was referred to plastic surgery rather than neurology). When I was seen by plastic surgery, the skull had filled back to normal again so the consultant advised my GP to refer me to neurology if there were any further symptoms.
A few months later in August 2024, I was doing an exercise video after work one night and felt like the right side of my jaw dropped and locked. I went to the other room to see what my husband could see. By the time I got to the doorway I was having a full seizure – my head was rapidly turning to the left and back, my right arm was flipping up to my left shoulder rapidly and I couldn’t form any words. My husband rang for an ambulance, thinking I was having a stroke (as was I by this point, but I couldn't vocalise it). The ambulance staff did their checks and agreed it probably was a stroke and said they would take me to the neurological centre at our local hospital.
At the hospital, the checks were repeated and a scan was carried out. The doctor said it actually wasn’t a stroke but they were not sure what it was. They said there were a couple of things that might have caused the seizure, one of them being cancer. That was really scary to hear.
I spent two and a half weeks in hospital, having another CT scan and an MRI scan. My medical team agreed that I could go home for a few days, on the understanding that I would return a week later for a cranial biopsy as there were lumps in my skull that were taking space and putting pressure on my brain, but they didn’t know what these lumps were. Two weeks after the biopsy operation, in October 2024, I received a call from the hospital which confirmed I had diffuse large B-cell lymphoma, a type of high-grade non-Hodgkin lymphoma with central nervous system involvement as the primary origin was in the skull.
I was distraught. My dad had been diagnosed with a blood cancer at 49, and we lost him to it a couple of years later. Although I’d had the incident with the head at Christmas 2023, the seizure felt out of the blue and unexpected. I’d had none of the ‘regular’ symptoms of lymphoma and kept thinking it must be wrong. But then what else would have explained the seizure? After diagnosis, I went into a sort of autopilot – I was given dates of when chemotherapy would be administered and I physically turned up when I was told to. I just couldn’t take it all in, so disconnected emotionally otherwise I would have crumbled.
I went on to have a bone marrow biopsy and further blood tests before having a PICC line fitted in readiness for chemotherapy which started a week later. I was told that my chemotherapy regimen would consist of six rounds of R-CHOP and four rounds of high dose methotrexate.
The side effects from R-CHOP were not too bad. I would have a metallic taste in my mouth a couple of days after each dose, and only hot drinks would satisfy a thirst. That would last for about a week, then start to fade. I would also have an upset stomach at around day six, where I wouldn’t have much of an appetite and felt quite sore.
My methotrexate rounds would take place eight days after each R-CHOP round, and the side effects from that regimen were awful. That also affected my stomach and I was in a really bad way. I either had diarrhoea or was sick after trying to eat. By the time I came to my last dose, I was experiencing both and didn’t eat for about a week.
I also experienced hair loss after my first round of methotrexate. I was distraught. I was already so physically poorly, and mentally not doing very well - and now this! At the start of the chemo I’d said that when my hair started to come out I would just shave my head, but when it started to I wasn’t ready for it at all, and it made my mental health even worse. So I let it come out naturally. Although I knew I would lose my head of hair, I hadn’t appreciated that I would also lose my eye lashes and nose hair. My eyes would be full of grit in a morning, and my nose would run without any warning at all. I hated seeing myself in a mirror – I felt like I looked like the worst possible version of me, each glance in a mirror would upset me so much.
As I write this in June 2025, I am in remission and attend reviews with my consultant on a three- month basis. Physically I’m OK. My stomach still has ‘off’ days, and I’ve lost a lot of weight. At one point, I was monitoring my weight loss daily but thankfully the weight has stabilised now, and although I’m eating regularly because I know I should to keep my strength up, I could never say I feel hungry. I have, however, started to have hair regrowth and my head looks a lot better for it. I can’t wait to have a more full head of hair, but the little I have got does for now. I’ve saved a fortune on hairdresser appointments!
Mentally I’m not so good as I feel like I am now left to process what has happened over the last few months. How do you return to ‘normal’ when you are in remission? Being vigilant for symptoms and living life to its fullest isn’t something I’ve got my head around yet.
Work have mentioned a phased return, and until spring next year (at least) I will be working from home and not the office.
My experience of lymphoma has affected some friendships. I’m now closer to some people than I was before this and I really value the support they provided during my treatment. Equally, some friendships have suffered as I wasn’t able to go to parties or nights out due to hospital stays and infection risks.
Until my diagnosis, although I’d heard the term lymphoma, I wasn’t aware of what it was. I didn’t know anyone who’d had it and I felt very much alone as I couldn’t immediately bounce this off someone and talk about what it all meant. I want people to know what might happen after diagnosis, and that they aren’t alone. If my story can help just one person understand the journey they might go on, it’s worth telling.
I was given a Lymphoma Action booklet by my CNS when I was diagnosed and from that day on, I’ve had so much support and information from the Charity. I read about my condition on Lymphoma Action’s website and joined the Facebook Support Group almost as soon as I was diagnosed. That helped me to feel more informed about my diagnosis, as initially I felt so clueless about this condition. I also wanted to connect with others who were in a similar position and could possibly hold my hand through it – even if that was on a virtual basis. I went on to join an Online Support Meeting so that I could speak to others and see their faces. That social connection felt really important, and both the Facebook Support Group and the online support meetings have helped with my wellbeing as I could ask questions and connect to people who knew what I was going through. Some were lucky enough to be years down the line from me and that was nice to see people who had come through it and were living life again.
Now that I’m post-treatment, I am listening to the Lymphoma Voices podcast series, particularly those that talk about life ‘after treatment’ and I have signed up to the Live your Life mini course. I am so grateful to Lymphoma Action for their support at every stage in my experience with lymphoma. I genuinely don’t know what I would have done without them.