Steve’s story

My name is Steve and I live in Australia. I recently retired after 40 years in the IT industry (and by recently I mean it sort of all was decided upon last Monday) I am divorced with three adult children. I have been single throughout the whole Follicular lymphoma journey. I was diagnosed in April 2016, initially as stage 2 grade 1 or 2 as I recall. I had a bone marrow biopsy later in September 2016 which showed high volume lymphoma involvement in my bone marrow so I was reclassified as stage 4 and commenced bendamustine and rituximab a week later.

I had my tonsils out March 16 2016 and was supposed to go back to my ENT for a follow-up on April 5. The ENT’s office called on March the 31st asking me to come to his office early on the following morning (it didn’t initially dawn on me that this was so he could deliver bad news) Anyway, when I arrived in his office and no one else was there except for him I was pretty sure I wasn’t going to have a good morning. Anyway, as expected he shared the bad news that my biopsied tonsils showed I have lymphoma. He may well have said Non-Hodgkin lymphoma, or perhaps ever Follicular lymphoma, but I have no recollection. In retrospect I should have taken someone with me to that appointment. During that appointment he had already found me a haematologist and had organised for his staff to book me a tentative appointment for the following Thursday, if I was happy to see that specialist. Of course, I was as I knew nothing about haematologists. He also gave me a referral for a CT scan which incredibly I was able to have about 2 hours later at the radiologist clinic in the same building as his rooms. I didn’t actually find out what the type of lymphoma I had until the Thursday appointment.

The biggest challenge for me was arriving in the deep end and not having a clue. Lots of uncertainty and I guess concerns about mortality. I was on watch and wait for a few months prior to the bone marrow biopsy and I was in a state of limbo up until the realisation that treatment was required immediately.

I “enjoyed” 5 rounds of bendamustine and rituximab from early October 2016 finishing on January 31 2017. My lymphoma symptoms were all related to my tonsils originally. They were very large and impacted my breathing and sleeping, which is why the decision to remove the tonsils was taken. Side effects from the chemo weren’t too bad. Nausea of course but that was almost manageable with various anti-nausea tablets, ginger tea and lemon barley cordial (of all things). In general treatment happened on the Monday, I was off for that week, then back at work the following Monday for 3 weeks up until the next round of chemo. About a year after my treatment, I got shingles.

My three children have been fantastic and escorted me to treatment and all subsequent appointments during treatment. My eldest son had studied pharmacology and neuroscience at uni and was able to interpret all sorts information I was receiving. My second son was studying to be a nurse at that time and was also able to provide amazing support and information. My daughter had moved in with me the year before and was fantastic in supporting me at home in terms of taking my temperature every hour after treatment to make sure I hadn’t exceeded the dreaded 38 degrees as well as assisting with anti-nausea tablets as required.