- Diagnosed with follicular lymphoma

Naomi's story

Naomi Stephenson was helping to care for her dying mum in June 2019, which would understandably be a stressful time in anyone’s life. However, the hits kept coming when a lump appeared under Naomi’s chin, and her journey with blood cancer began.

“It’s been a comfort to know that Mum never knew, as she would have been upset, but I ended up being diagnosed with follicular lymphoma. My mum died on June 26th, and I was diagnosed on August 2nd.”

Naomi then underwent CT scans to determine how advanced her case was.

“I was either stage three or four, but they weren’t sure. If it’s in the bone marrow, it’s stage four, but you need an invasive procedure to find that out.”

Naomi’s oncologist decided that because he would recommend the same treatment for stages three or four, the bone marrow biopsy was unnecessary. However, the CT scan could reveal the spread of the disease.

“It was above and below my diaphragm. The biggest one was tucked into my pelvic bone, and it was six centimetres in size.”

Because follicular lymphoma is a slow-growing form of lymphoma, you may be placed on ‘watch and wait’, also called ‘active monitoring’.

“That’s hard for people to understand because you tend to think with cancer, that you take care of it, and that’s it.”

Naomi was curious about when treatment might be required, so she had a chat with her oncologist shortly after her diagnosis. When pressed, he estimated she might need treatment in one to three years. Unfortunately, her cancer progressed quicker than that.

“Six months later, I had CT scans, and it had grown and spread quite a bit, so just into lockdown last year, he recommended treatment. The largest tumour was 8 cm.”

Naomi says that going through treatment in a COVID-19 world was a double-edged sword. On the one hand, it was scary as she was immunocompromised during a pandemic. However, it was also protective, as she was not out in the community while at risk.

Thankfully, Naomi is now in clinical remission.

When asked about the support that she received during her cancer journey, Naomi says that much-needed information managed to come at the right time, and she is very grateful for the support from LBC.

“I received a link to a new fact sheet that had come out through LBC, and it was titled ‘Chemo Brain’. It was just like reading a tick list.”

When someone is diagnosed with cancer, it is not uncommon for people to want to share their knowledge and thoughts in the hope they are helping. This was no different for Naomi, but she shared a great takeaway from her journey that is worth noting,

“Many years ago, the first midwife that we had, had given me some advice that’s been useful in lots of ways in life. She said, ‘taste everything but only swallow what’s good for you.’”