Nicola talks about learning to adapt to a diagnosis of follicular lymphoma. 

Nicola - hero image

I had recently had a baby daughter; a sister for our 7-year-old son Archie. I work as a social worker for adults with physical disabilities and was returning to work after maternity leave. I had only been back in the office for half a day, when we were all sent home because of the pandemic. 

In May 2020 I noticed I was having difficulty swallowing. I was having a drink of water in bed and thought it was going down the wrong way. This happened several times over the coming days. I also had a sore throat and a cough, but tests for COVID-19 came back negative.

It was progressively getting worse and when I was driving I noticed that if I turned my head to the right it really affected my breathing, almost like something was blocking my windpipe. In August I  called my doctor. 

My doctor organised a two-week referral to a thyroid specialist who arranged an ultrasound of my neck. A lump attached to my thyroid and another lump in front of it were visible in the scan. At first it was suggested that these were likely to be goitres, but a fine needle biopsy was organised and in November 2020 I had an ultrasound guided fine needle biopsy.

The process involved them removing a sample from the one of my parotid glands (salivary glands that sit just in front of the ears on each side of the face).

The biopsy results came back as benign (non-cancerous) and they suggested a follow up appointment in six months’ time. Although it was benign, it was still causing problems for me. By the end of January I was struggling to talk and my voice had completely changed. In addition, where they had taken the biopsy, a painful lump had appeared.

I went back to my GP who thought it could be a blocked salivary gland and started me on a course of antibiotics, which did not improve things. I ended up in A&E where an ENT consultant also thought it looked like a blocked salivary gland. He tried to squeeze the lump to clear it and I almost hit the ceiling with pain. A core biopsy of the parotid gland was arranged and a week later I had an appointment to meet with a consultant. 

I was told that the biopsy had shown that I had follicular lymphoma and that I would be referred to haematology.

Despite only being 33, it wasn’t a shock in the end as it was obvious to me that something was very wrong. Over the last few months, I had been doing a lot of my own research, so I knew a little bit about lymphoma.

My children were an absolute blessing as they took my mind off what was happening. 

The next week was difficult. My children were an absolute blessing as they took my mind off what was happening. But when they were asleep I spent a lot of time doing lots of reading. I had been given the Lymphoma Action Low-grade non-Hodgkin lymphoma book by my medical team. The book gave me specific information about my condition, and having searched the Lymphoma Action website as well, I felt more reassured. 

I had a full body CT scan and I had further biopsies in my neck. This confirmed that the lumps in my neck were lymphoma, and the scan found a tumour in my right pelvic socket, my abdomen (belly) and the mesentery (a fold of membrane that attaches the intestine to the abdominal wall). 

The lump in my neck had pushed my gullet (where food passes from the mouth to the stomach) over to the right of my neck and so they needed to start treatments straightaway. I was to be treated with chemotherapy and immunotherapy; six courses of bendamustine and obinituzumab. 

I told the children that I was likely to be ill and that I might lose my hair. What I hadn’t appreciated was that with this regime I wouldn’t actually lose my hair.

Certainly to start with, it was the steroids that had the most noticeable effect. I was absolutely ‘wired’ and then crashed. I also found I couldn’t sleep, so quickly became exhausted. But in truth I found that I was coping really well with the treatment, to the point that I asked the nurse whether it was normal to feel this OK. 

For me the treatment had a cumulative effect.

However, for me the treatment had a cumulative effect. The side effects started with a bit of nausea, but that developed into severe sickness, as well as constipation and diarrhoea. I also had quite a bit of pain in the tops of my legs and my knees which has improved but I can still feel. I also had days when I felt so exhausted, I just didn’t want to move. 

My mid-point scan after the third round of treatment showed that I had an excellent response to treatment with the lymphoma having significantly shrunk. The lump on the side of my face was no longer visible, which was reassuring, although the CT noticed a small lump still on my thyroid.

I finished treatment in September 2021 and have started maintenance therapy, having an infusion of an immunotherapy treatment called obinutuzumab every 8 weeks, which I am due to have for two years. 

During treatment I was overwhelmed by the number of calls and texts asking how I was doing. I was happy that people cared, but was struggling to keep up with the conversations and started to worry that I wasn’t replying to everybody. I therefore decided to set up an Instagram page so that I could post updates on there. A bit of a community built up around Instagram, and one of the main topics of discussion was around ‘remission’.

I know that follicular lymphoma is incurable and know it will come back again. However, I became fixated on reaching remission. I asked my consultant whether he would say I was in remission. His response was that because of the nature of my lymphoma, he wouldn’t use the term ‘remission’.

That set me back a bit, but I slowly came to terms with the fact that I am facing a condition that is manageable but not curable. It has taken me some time to adjust to this being my new life; my new normal. A life that includes regular hospital checks, blood tests and treatment. At first this felt overwhelming, but I am learning to accept it. I’m not quite there yet, but hopefully this is something I will come to terms with, and learn not to think about it much of the time. 

I did have six sessions with a counsellor via BUPA following the end of treatment. I had been worried about the ‘stigma’ surrounding mental health and the fact that I felt I needed some counselling, but these sessions helped me massively. I would recommend counselling to anyone going through cancer treatment and people shouldn’t hesitate to ask for help if they need it. I wish I had done that sooner. 

One of the main things that affected me was that I am a social worker, whose job it is to help others, but who then became the person on the receiving end of such assessments and support. I’d just never imagined I would be that person on the receiving end, and especially not at 33 years old. 

I returned to work in February, which for me was an important part of my recovery. I had a meeting with occupational health who said that I would need to work from home for the next two years as I was on maintenance therap. At first I was disappointed with this, being a social worker who cannot see people, but I understand that they are doing it to protect me. In fact, I am finding it works much better than I would have thought and am enjoying being back at the workplace.