Rebecca's story
Rebecca reflects on her experience of being diagnosed with follicular lymphoma, and how nothing prepares you for treatment.
Back at the beginning of 2024 I was on maternity leave with our baby boy. I was attending baby groups, enjoying my family, and spending time with my friends and their children. I was also able to go on holidays during term time (which as a primary school teacher, I never usually get to do)!
My father-in-law took a picture of me, my husband and my son asleep on the plane during one of our trips away and looking at it, we noticed how the glands in my neck looked very swollen. I didn’t have any symptoms other than swollen glands and feeling very tired, but it was only seven months since I’d had my baby and I was still feeding him throughout the night. I thought that exhaustion was just part of being a new mum.
I went to the GP about the swollen glands and was told to wait for three weeks in case they were reacting to a virus. I called back three weeks later and was advised to leave it a little longer. My GP called me back two weeks after that and asked how I was feeling. I told him that my glands were still swollen, and I was feeling more swellings now in my neck and face. I explained that I wasn’t getting much sleep as a new mum, but I couldn’t differentiate between ‘new mum exhaustion’ and ‘poorly exhaustion’. The GP ran some blood tests and they came back positive for glandular fever, so I was then told to just wait until it improved over time.
A few weeks later I felt a swollen gland in my armpit. I went back to the GP who urgently referred me to the breast clinic. I demanded a scan on the glands in my neck and the hospital scanned me and took biopsies the following week.
Three weeks later, I had a call from my GP who explained that I had been diagnosed with lymphoma. She said that the type I had was slow growing and treatable, but was an incurable type of lymphoma. We were all completely shocked but understood what a lymphoma diagnosis meant as my maternal grandad was treated for non-Hodgkin lymphoma 17 years ago.
“ I was terrified when I was diagnosed over the phone and none of our questions could be answered. I remember hugging my seven-month-old and saying out loud ‘mummy isn’t leaving yet!
It was an agonising two day wait for a phone call from the lymphoma specialist who confirmed my full diagnosis – stage three follicular lymphoma. By this time, it was June 2024 and as my lymphoma was bulky and fairly widespread, we decided to start treatment as soon as possible after my son’s first birthday.
When I saw my PET/CT scan and the spread of the lymphoma in my body, it felt like there was something foreign inside of me that I needed to get rid of as soon as possible.
I am a very organised person, who likes to be in control, so from then on I just wanted to start treatment as soon as possible.
I had my first round of chemotherapy on 14 August 2024. I hoped that the treatment would be successful just like my grandad’s was all those years ago. Being diagnosed with follicular lymphoma at the age of 36 with a one-year-old child is terrifying for many reasons but the scariest thing is that it is incurable, and I would have to fight this for the rest of my life. It worries me that throughout his life he’s going to see his mum go through different types of treatment.
I went on to have six rounds of R-CHOP chemotherapy. I had a small allergic reaction to the rituximab on my first round which meant that every round of chemo after that took six to seven hours each time. The nurses were incredible and were so supportive and friendly. They put me at ease throughout what was such a daunting experience. I was very lucky that I never experienced nausea throughout my chemo treatment, but I can still taste the chemo in my mouth every now and again when I think about it and it makes me feel sick.
I had long thick hair before my treatment started and by day 14 after my first round of chemo, it was coming out in clumps. I told my husband that I couldn’t stand brushing it anymore and seeing it fall out. It was at this point that my fear of losing my hair seemed to go away: all I wanted to do was shave it so that I didn’t have to prolong the heartache.
My husband agreed to shave my hair. For a week after I tried wearing a wig or head scarfs, but the treatment was making me have hot sweats and I couldn’t stand anything on my head. I decided at this point that I wanted to be more comfortable and would just walk around with my bald head uncovered.
After my second round of chemo, I spent five nights in hospital with neutropenic sepsis. My neutrophils had dropped to a scary level and I was now at a severe risk of catching an infection and getting very poorly. This was a really scary time as I had never stayed in hospital by myself before, other than when I had my son.
“ This is when my health anxiety really kicked in and for the four remaining chemo treatments my anxiety went through the roof.
I was forever taking my temperature and telling myself that I was going to get poorly with sepsis again and I would have to spend more time away from my son in hospital. From August to December we barely went anywhere where I would be at risk of catching an infection or a virus. My son never started nursery and I took care of him every day whilst going through treatment. The only people we saw during this time were family members.
All the way through my treatment, and for the last nine months since treatment has finished, my biggest side-effects have been hot sweats and unstable hormones. Chemo put me into menopause for a while but once treatment ended my periods came back with a vengeance. I have since found out that I am in perimenopause and experiencing some horrible side-effects due to that.
Following a PET scan in January 2025, I received the fantastic news that I was in remission and there was no evidence of disease. However, during the scan they found that I also had thyroid capillary carcinoma cancer and would need to have a hemithyroidectomy in the March. My health anxiety was at an all-time high and I was struggling to leave the house. My husband, the person that knows me the best, said that he didn’t recognise me and I was struggling to cope with heightened emotions, anxiety and fear.
I knew I wanted to start living life again and I felt so much guilt that my son hadn’t been to many public places or socialised in the last six months, so I set myself small challenges every week. Along with my parents and my husband’s support, I was able to start attending a toddler group, a small swimming class and I started to go into shops without wearing a face mask. My two biggest challenges were to feel comfortable sending my son to nursery and returning back to my teaching job. My son started nursery in May and I am now back teaching part time. These were huge milestones that I’m very proud of.
I am sharing my experience so that if another young person receives a diagnosis of follicular lymphoma, they can read my story and try to take some peace from it.
“ For me, knowledge is power and during my diagnosis and treatment I was always looking for stories or scientific evidence to reassure me that I was going to be OK.
This year we have tried to have a ‘yes’ year where we have spent more money on holidays and enjoying ourselves than we would have prior to my diagnosis. Experiences and memory making are now at the top of my priorities. I will always remember the friends that supported me along the way and were my biggest cheerleaders.
I try to forget my diagnosis on a day-to-day basis as living with an incurable cancer at a young age can really lay heavily on you. However, there are days when you wake up and feel achy or your brain tricks you into thinking that you can feel a swelling.
These days can be really difficult, but I remember a therapist telling me how he copes with his health anxiety. He said that when something came up that could be classed as a symptom to ‘give it a week’. Most things will go away in a week and if they don’t, then you can seek help. I try to live by this every time I start to feel poorly or think that I can feel any swollen lymph nodes again.
I take joy out of the little things in life like an autumnal walk in the woods with my husband, son and dog, a weekend away to the beach, dinner out at a new restaurant, seeing my son grow and develop day by day.
I will forever be scarred by the last year and how I had to battle two cancer diagnoses, but I will also never be prouder of my body for the way it has coped and come out the other side.
Did you know?
Follicular lymphoma is the most common type of low-grade non-Hodgkin lymphoma and in most cases there is no known cause. About 2,300 people are diagnosed with follicular lymphoma every year in the UK. It can develop at any age, but it is more common in people over 60. It’s usually slow-growing and there is rarely an urgent need for treatment; some people might not need treatment for many years. Your medical team will consider carefully whether you need treatment straightaway and what treatment is best for you.
