Monika’s Story: Follicular Lymphoma

It was the beginning of 2023 and I’d just starting studying Nursing. After a year of being unwell and not able to work I was delighted to be feeling better. So much so that I’d signed up for a Nursing course in addition to going back to work as an Exercise Physiologist.

The previous year I’d been plagued with a strange onset of neurological symptoms that left me unable to do very much at all. Part of the condition involved drenching night sweats which at the time, due to my age I thought could have been hormonally related. I’d only been back at work for two weeks and a few weeks into my course when I noticed a lymph node in my left groin. The lymph nodes in that area had always been prominent but this one was different, it was large, painless and fairly immobile. It seemed to appear almost overnight.

I’ve always been fairly anxious about my health but decided to give it a couple of weeks before seeing my GP. I thought it may resolve on its own. A few weeks later after an inconclusive ultrasound and a trial of antibiotics the lump wasn’t going anywhere so off I went for to see a plastic surgeon for further assessment.

The doctor was able to order a core needle biopsy and it was three days later on the 2nd of March I received the phone call, I’ll never forget the words, it looks like a lymphoma and I’ve made an appointment with a haematologist for you.

Fast forward to more tests and eventual lymph node removal I found out I had a rare form of Lymphoma called Diffuse Follicular Lymphoma.

This type of lymphoma usually presents with a large groin lymph node, which was exactly the case for me. I found out my lymphoma was low grade, and was stage one.

I felt very fortunate as the tests could not locate evidence of lymphoma anywhere else in my body. I had some complications post lymph node removal which wasn’t a common occurrence but did delay my treatment for a couple of months.

Since my lymphoma was low grade this delay fortunately wasn’t an issue, however mentally I did struggle as I felt like I should be in treatment straight away!

During this time I called the lymphoma nurses at Lymphoma Australia who ended up being not only a wealth of information, but also an amazing emotional support.

I learned that follicular lymphoma grows very slowly, often over years, hence the term indolent used to describe it. I also learned from my neurologist that my neurological symptoms were likely a result of my immune system detecting the lymphoma and trying to attack it, while in the process also affecting my nerves.

I’ve now completed radiation therapy and am about to start immune therapy. My neurological symptoms have gone and I wouldn’t even know I was sick. I’m back to my running and usual exercise regime. Part of me feels like I don’t need treatment however I know that lymphoma is now part of my body despite not having symptoms.

When reflecting upon this year it’s certainly been a roller-coaster of emotions. Initially I was in shock, and quite numb of any feelings, people told me I was handling the news exceptionally well! I then went through a very low phase where I didn’t see a future and cried a lot of the time. I have five children and wondered if I’d be there for their weddings, children etc. It was a very dark time.