Julia talks about her diagnosis of follicular lymphoma and how she is still trying to acknowledge the fact she has lymphoma.


'I had no idea that anything was wrong with me. I was a regular runner, fit and healthy, or so I thought. So to get a diagnosis last year completely floored me.

I was 47 and had worked in the prison service for 27 years, initially as a prison officer, but more recently in prison education. I am married and have two children; one daughter had recently trained to be a teacher and another was just about to go to university to study midwifery.

I felt this was a time of change and had applied for a new job. My husband and I love to travel and we had talked about going to live in Amsterdam. Sadly, that has had to go on the back burner as did the new job!

Indigestion had troubled me for 3 years on and off and I found that nothing helped. My GP suggested I have a scan to check that everything was OK.  

My husband and I were on our first holiday of the New Year in Lithuania and I was surprised to receive a call while I was away asking me to go in regarding the scan. 

The penny hadn’t dropped; I thought they were going to tell me the scans were fine.

I went to the appointment on my own, thinking that haematology was just for more blood tests. Instead I was told that the scan had revealed an 11cm x 8cm mass in my abdomen.

In May, after three biopsies, I was diagnosed with follicular lymphoma and six rounds of chemotherapy were planned to shrink the mass.

I was told that when my white cell count was down, I had to be careful to avoid catching anything. It's difficult to avoid germs in places like prison, so I had to take time off during treatment. Sadly all of our trips away had to be cancelled as this also meant I couldn’t fly.  

I found having chemotherapy wasn’t as difficult as I thought. Medications to alleviate symptoms were good and I received great care from my hospital team. My youngest daughter was in Australia while I was having my first treatment and was anxious to be kept updated daily on how I was getting on. Three weeks after starting treatment my hair started to come out in clumps.  

The scan at the end of the six treatments showed that the mass had shrunk by less than half, so a further two rounds of chemotherapy were given. I am currently on maintenance rituximab and am interested to see if this shrinks the tumour any more.

I actually feel worse now than when I was having the chemotherapy. Before this, I was never ill, but now I have aches and pains and every twinge I have has made me become paranoid about my health. When I thought about my recovery I didn’t necessarily think that I would bounce back into great shape and health straightaway, but I didn’t expect to get worse!

Every twinge I have had made me become paranoid about my health.

I feel like my body, and in part my mind, has been completely devastated by the treatment. I feel that in those weeks of chemo I aged 40 years or more! It’s like I went away and came back in the body of a different person I don’t recognise when I look in the mirror. And that’s not just about my hair, which is mostly grown back! But it's still early days!

While I was away from work, I didn’t have a routine so it was easy to relax and be looked after. I didn’t really struggle with the fatigue that I had read so much about. But now I have returned to work, I find I need to plan everything far more than I did before. I am the head of the prison education department and my daughter, who trained as a teacher, works with me. We deliver education to over 8,000 learners a year in a very busy department.

I have attended a couple of Lymphoma Action Support Group meetings local to me. I found them very helpful, with incredibly interesting speakers. I also liked the opportunity to ask questions about things that I either couldn’t remember or didn’t want to take the consultant’s time over. In fact, I have recently volunteered to run the group, as I think it is such a valuable resource.

So over a year on and eight rounds of chemotherapy later, I am still in shock that I have cancer but I am pleased to say we have just taken our first trip abroad and I intend to get back into exercising. I am back working full time and hopeful that I will get many more years before my lymphoma relapses.'

June 2019


Read Julia's volunteering story here