Debbie: Living Every Moment with Follicular Lymphoma

I didn’t even know it was a type of blood cancer

“It was twelve years ago now, and initially all I noticed was that I was extremely tired and I’d started to lose a bit of weight. I’d just started a teaching degree and was also approaching the menopause, so I just put it down to that. Then I found a tiny lump on the right-hand side of my neck and thought I’d better get that checked out but thought nothing of it really.”

Follicular lymphoma can cause a range of different symptoms, but not everyone will get all or even any of these symptoms. Each person is different and will have a different experience. The most common symptom of follicular lymphoma is swollen glands (lumps) in your neck, armpit or groin but other symptoms may include fatigue, unexplained weight loss and drenching night sweats.

It’s a cliché to say it’s a roller coaster but it really is

“After two weeks of tests I was told I had follicular lymphoma and that I needed to start chemotherapy treatment immediately. I’d never heard of follicular lymphoma, I didn’t even know it was a type of blood cancer. It just came completely out of the blue. Being diagnosed was hugely scary, a kind of out of this world experience really. It was an immediate moment of being very, very scared and thinking that I was going to die.”

After two years of intensive treatment, Debbie is now in remission.

“Fatigue is 100% the most burdensome symptom that I am still living with as a result of the condition. Some days are better than others, but you have no idea how you’re going to feel at any given moment, and it can make it difficult to make plans.”

I’m always waiting for it to come back

Follicular lymphoma is not curable, but it can be treated, allowing people to often live for many years with the disease. However, it’s likely that the lymphoma will return at some point, and then further treatment will be necessary.

“I’ve been in remission for nearly ten years now but you’re always waiting for the relapse, always waiting to feel ill or for lumps and bumps to appear. The pressure grows the further on you go without having relapsed. It hangs over you constantly.”

Help others to help yourself

“I’m very passionate about raising awareness of this disease so that other people can look out for the signs and symptoms as well as understanding the long-term effects of living with the condition. I’d encourage anyone recently diagnosed to find someone to talk to and not to compare your journey to anyone else’s – we’re all very different.”

Follicular lymphoma facts

• Follicular lymphoma is a form of non-Hodgkin lymphoma characterized by uncontrolled growth of B lymphocytes; a type of immune cells.
• It can affect both adults and children at any age but is more common in people over the age of 60.
• There are often no obvious initial symptoms of follicular lymphoma but some can develop gradually over time:
  • Swollen glands (lumps) in the armpit, neck or groin
  • Night sweats
  • Unexplained weight loss
  • Fever
  • Fatigue

Approval: DRSC-ALL-001574 September 2023