In May 2022 life was really good. I was 32, married with a 2-year-old daughter and, having qualified as an English teacher, was working as a Special Educational Needs Co-ordinator (SENCO).
While having a shower I noticed a lump which felt about the size of a golf ball. I had no symptoms whatsoever and at first wondered if I was imagining things. I did a search on Google which indicated that it could be as a result of an infection. I also read that if a lump doesn’t go down within two weeks, seek medical advice.
The lump didn’t go and a visit to my GP resulted in being referred to hospital for various tests, including blood tests and an ultrasound scan. This was followed up with a laryngoscopy and then a biopsy of the lump. While waiting for the results of these tests, I did a lot of research, trying to avoid catastrophising what it could be. I didn’t think about cancer.
I was at work when a call came through with the results. The doctor explained that the results had revealed lymphoma. He explained that someone from the haematology team would call me, but it meant that I spent over a week wondering what type of lymphoma I had. It was a really worrying time. I was diagnosed with stage 3 Hodgkin lymphoma.
All I could think about was my husband and daughter. What could I say to them? My husband was understandably quite shocked and upset and we talked about how we were going to approach things. We agreed to try and keep things as normal as possible for our daughter and decided we would only tell family and close friends. At work, I only told the leadership team.
I had previously had an infected wisdom teeth, which I had informed my team about. The consultant told me it was important for me to have my teeth looked at before treatment to avoid complications and the risk of infection. I ended up having all four wisdom teeth removed under local anaesthetic just five days before chemotherapy started.
I had large masses on my chest. I had two intensive cycles of chemotherapy (escalated BEACOPP). After these I had a PET/CT that revealed I was in remission. My treatment was then de-escalated to AVD and a scan at the end of treatment showed no evidence of lymphoma. I felt a mix of feeling ecstatic, surprised and confused as I had only just got my head around things.
During this time I continued my role as a SENCO, and I was able to continue working at home whilst having treatment for the most part. I found working a welcome distraction from everything that was going on. The leadership team at work were incredibly helpful during this time, particularly my head teacher, who was really supportive throughout my illness.
I had been made aware I would be more susceptible to infections due to having a low immunity. In November, I felt really unwell, feeling even more fatigued than usual and really struggling to do anything. I had no appetite and had a high temperature. In my mind, I thought this was just because of the chemotherapy, so decided to give it a couple of days to see if I would feel better. On the morning I ended up in hospital I was home alone with my daughter and had already blacked out twice. I could only crawl and felt incredibly dizzy and it dawned on me that this feeling was not OK. I ended up laying on the kitchen floor in septic shock, with my daughter beside me.
My husband came home and rushed me to hospital, where they told me I had neutropenic sepsis. I was rushed into resus and ended up in hospital for 8 days with sepsis for the first time. I was discharged on the day of my daughter's 3rd birthday party, so I could attend. This gave me a well needed boost.
I was shocked by just how quickly I had become seriously ill and by then it was difficult to do anything about it. Once I had recovered from neutropenic sepsis I was able to have the last four cycles of AVD chemotherapy, which finished in the middle of March 2023.
I was really pleased treatment had finished, but it felt like my safety blanket had gone. I am seeing the team at follow-up appointments and know I can contact them with any concerns, which I did when I felt something in my neck again. It is a worry that the cancer could come back or even that I could get a different type of cancer, but I cannot dwell on this, and I try to remain as positive as I can about my life. This has been one of the motivations to me writing a book about my experiences.
One of the things I have found has really helped me throughout my experience has been keeping a journal. My mother-in-law gave me a wellbeing diary when I had my diagnosis and I have used it as a journal to put down all my thoughts and feelings; particularly things that have frustrated me. I suppose as an English teacher writing thoughts and poems is a natural thing for me.
I am a reflective person and as treatment finished I found that I have thought a lot about how I am feeling. I reflect on what I have gone through, getting better and being well is a priority. I do want to get back to doing all the things I did before and take the time needed to recover. I am pleased to be able to do more things with my daughter now and glad to be back to work as normal.
It’s still early days and I am starting to feel like my body is coming back to me. Although my hair is starting to come back, looking in the mirror and seeing my hair is still a daily reminder of what I have gone through. I know it’s quite a superficial thing, but my hair was such a large part of me and losing it made me feel like a sick person.
At the moment I feel old. I get stiff very quickly and I feel aches and pains even if I’m just sitting on my sofa or at my laptop. Mentally, I know my brain doesn’t feel the same. My short-term memory is not great at the moment, so I write everything down and I feel I have to be told things several times before the information really sinks in. But things are improving slowly and my energy levels are getting better and being more active is helping with my recovery.
I have put a lot of pressure on myself to get back to how I was before my diagnosis of Hodgkin lymphoma, but I am slowly realising that I am at the beginning of recovery and that it’s going to take time. For now, I just need to stop putting so much pressure on myself, take the time needed to recover fully, whilst getting back to normality and living life to the full.
Using the poems I wrote about my experiences, I have written a book that has been published. I wanted to share my experiences in order to help others and raise awareness of lymphoma and sepsis. I feel this is a big part of my story as it has turned something that was devastating into something positive.
To read Naomi's poetry, search Amazon for 'The C Word: Poetry Collection' by Naomi Flaherty.