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Sarah’s story – B-cell Follicular Lymphoma

I didn’t want lymphoma, but it’s taught me a lot about myself

As a former research scientist and now science writer, I’ve long thought of myself as someone who knew a lot about cancer. Since being diagnosed with lymphoma in July 2019 however, now I realise there was a lot I didn’t “get”.

Sure, I understood the biology. That made sense to me.

But the emotional and psychological implications of this condition are difficult to understand without personal experience. Now, 2.5 years later and in remission, I’m still processing a lot. I suspect these aspects will be with me as life-long challenges.

Before diagnosis, I don’t think I experienced many obvious signs of lymphoma. Perhaps a bit of weight loss – but I rationalised this as due to increasing my running schedule. I was pretty fit at the time. Maybe the odd night sweat, possible increased frequency in bowel habits. These I blamed on early signs of menopause (I was 47) and a diet high in fibre.

But nothing could explain the lump I felt in my abdomen, up quite high. I gave it a few weeks to see if it resolved. Nope, still there.

A trip to the GP turned quickly into scans and specialist doctors and a biopsy and the news that I was carrying around a B cell follicular lymphoma. It was in one, maybe two lymph nodes next to my aorta.

I convinced myself this wasn’t too bad. No evidence of it in my bone marrow, no signs in my blood. At least it wasn’t ovarian cancer, right? I knew how bad that could be.

But the truth is it was awful, shocking, confronting. I can see now these feelings were there, but I pushed them down.

For me, one of the hardest things about being diagnosed with lymphoma was telling people. Informing loved ones was awful. I felt guilty creating sorrow and concern in them. Of course it wasn’t my fault. But I still regretted it so much.

I tried to keep a lid on the information as a way on controlling the situation. I didn’t lose my hair, and so I was able to keep my lymphoma relatively secret. In the early days, I didn’t want extra attention, and I didn’t want my kids being bombarded with comments either. Of course, I let their school teachers know, and then left it up to the children to choose who they told. That seemed to work well. Although I’m very active on Facebook, twitter and Instagram, I didn’t make any mention of it on social media until just recently (once I knew I was in remission).

I launched into treatment in August 2019, starting chemotherapy and immunotherapy in an initial regimen that would continue over six months. My drugs were bendamustine and obinutuzumab.

Sarah K and family
Sarah and her family visiting Whyalla

Thanks to some good advice from a friend (whose own daughter had been through cancer treatment as a child), the initial focus for my husband and myself was to try to maintain as much of normal family life as we could. He continued going to work, and we kept the schedules of school and extra-curricular activities of our three children. It was busy but doable thanks to a lot of help from family and friends. We are so lucky to have had incredible support, and still do.

My chemo made me feel poorly 3-4 days each cycle, but I was luckily still able to walk the dog, make lunchboxes, drive to drop off and collect children, and do other simple tasks. I even did a bit of work from home. These activities were so important for my mental health – I was still useful, competent, active.

A scan midway through this period showed the treatment was having good effect, and after six months I was classified as in remission. I started two years of obinutuzumab maintenance therapy to push out reoccurrence into the distant future (hopefully).

Two years is a long time, and it’s weird state to be in. I wasn’t quite in the all-clear, but I wasn’t ill either. Just in a kind of holding pattern. Treading water. You can’t forget you’re a patient, as just when you manage to stop thinking about your worries, up pops the two-monthly wake-up call. Off you go again; back to the clinic and hooked up to the IV line.

I’m having a whinge here, but I’m so grateful to have had access to excellent clinical care.

Initially I was due for my final treatment in December 2021, but the impending opening of South Australia’s borders made me nervous about the risk of catching COVID. I wanted to give my body the chance to make some healthy B cells so my third vaccination could create some useful immunity. I talked with my haematologist, and we did a scan in November to see what was going on. The pictures showed I was still in remission, so we stopped the maintenance therapy after 10 doses (instead of 12), and I had my booster in early December. Now COVID cases are climbing fast in this state, and it’s a decision I’m glad I was able to take.

I finally started to think more seriously about my mental health towards the end of my maintenance therapy period too. While I’d kept myself on a reasonably even keel during treatment, I often felt anxious and I knew there was some fear deep down that I needed to confront. Thanks to advice from another friend (who had recently been treated for breast cancer), I found a specialist cancer distress psychologist who had herself been through breast cancer. She has made a huge difference to my overall health, and is encouraging me to face my fears and make life what I really want it to be.

In January 2022 I’m turning 50 years old. We will celebrate by renting a beach house, and having meals with a few small groups of friends and family. The year could be another difficult one – thanks COVID – but I’m looking forward to it nonetheless.

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