I was diagnosed with lymphoma on 29 January 2024, a day I remember so clearly. I was 26 and keen to read about other people like me with nodular lymphocyte predominant Hodgkin lymphoma (NLPHL). I found no one else of a similar age to me with NLPHL so hope by sharing my story it may be helpful.
When I was a child I had a lump in my neck surgically removed. The lump was tested but did not come back with anything concerning. Over the years, I noticed small lumps in my neck and my mum and dad took me to the GP to get them checked. The doctors weren’t concerned and just said it was swollen lymph nodes; I was someone who seemed to get a lot of colds. We weren’t overly worried about them as I didn’t have any symptoms or pain with them so I just got on with things without giving it any thought.
In December 2023 my partner Kyle suggested I get my neck looked at again. We were planning to get married and I hoped to have the lumps removed beforehand as by now they were quite big and noticeable. I’m so glad he made me get them checked out.
After examining my neck, a GP I hadn’t seen before suggested I go to the hospital ENT department. The ENT doctor decided it was best to take a biopsy which didn’t cause me any concern at all as I thought anything concerning would have been picked up years ago.
Two weeks later I had a call from the ENT doctor saying that the biopsy had shown that I had a blood cancer and an appointment would be made for me to discuss the next steps.
I was diagnosed with nodular lymphocyte predominant Hodgkin lymphoma, stage 4. A CT and PET scan had shown that the lymphoma was in my neck, chest, stomach, spleen and in my bone marrow.
Have I had lymphoma the whole time and just didn’t know? I was absolutely shocked and in disbelief and couldn’t take it all in.
For the next few weeks it all felt really overwhelming and I felt stressed all the time. It took time to come to terms with what was actually going on. I just couldn’t get my head around the fact that I’d had these lumps in my neck for so long.
I was asked if I’d like to consider fertility treatment, and was fortunate there was the time to have IVF as I didn’t need chemotherapy straightaway. Both Kyle and I were sure we wanted to go for it, although we were quite nervous. But the nurses were amazing and made us feel relaxed and calm and the fertility treatment resulted in some embryos being collected and stored for us.
I am currently on active monitoring (or watch and wait) and feel really confident in my oncologist. Initially I attended the clinic every three months to have my bloods taken, weight checked and talk about how I’m feeling. This has now been moved to every four or five months.
I have my own hair salon and used to work around six days a week. Since my diagnosis I have taken a step back from work slightly, which has been great but strange. I am now able to have a work-life balance that allows me to see my family and friends more. Saying that, my job is really sociable which stops me thinking too much about the lymphoma. I am busy, focussed and distracted when working.
I see a therapist once every couple of weeks. He is a massive part of my journey. He makes me feel positive on every visit and really listens to how I am feeling. It can be difficult talking to family and friends as I don’t want to make them concerned, so it’s good talking to someone who isn’t emotionally attached.
I take one day at a time and try to enjoy life to the fullest. As I am on active monitoring, we try to do a lot of positive things as this diagnosis has been a reminder of how short life is. We have booked our wedding for next year, so really have got a lot to look forward to.
My partner, family and close friends have been amazing, and I really feel like I’m not tackling things on my own. This has really helped me to keep strong.