While the thought had crossed my mind, I’d never thought lymphoma would be what I was eventually diagnosed with.
Diagnosis
About 8 days after my first COVID vaccine in September 2021, I had some lymph nodes come up in my neck, which my regular GP assumed were just reactive as a result of a vaccination. They never went down before I received my second vaccine which we’d assumed would also cause reactive nodes anyway.
As the weeks went on, the nodes never went down and I started to develop a cough. My regular GP was on leave but, in November, I saw another GP who I’d seen before. He told me I had bronchitis so gave me a course of antibiotics. My chest felt a little better, but the cough didn’t completely resolve – unsurprising since it can linger months after bronchitis. After about a month, when I got up most mornings I had intense itching usually on my legs and head; with no rash this was assumed to be an allergy. I was starting to lose energy as well, the cough was getting deeper, and a couple of new nodes had come up in my neck.
I spoke to another GP in January 2022, who told me it was most likely just a prolonged response to having had bronchitis and I didn’t need to present to anyone before my scheduled appointment with my regular GP in February. As soon as that appointment came and we sat down, my GP took one look at my neck and heard the cough, and straight away sent me down the corridor to radiology to get a chest x-ray. He came out from looking at my chest x-ray with tears in his eyes. Straight away I thought “f*ck, I’ve got lymphoma”.
Once we checked my recent blood results and both had a bit of a cry, he gave me a referral to an oncologist he knew very well, and not even 2 hours after the referral was faxed, I got a call from the hospital saying that oncologist wanted to see me in 7 days’ time.
When I first met my oncologist, he told me straight up he was pretty sure I had lymphoma. 5 days later I had a heart ultrasound (for chemo planning), biopsy, PET scan and CT scan. 2 days later, on a Thursday, I had a video call with him to get the PET scan results. He didn’t yet know what kind of lymphoma but whatever it was, it was stage 4.
A few days later on 1st March, he called to tell me he had the biopsy results and a full diagnosis: stage 4 classical nodular sclerosing Hodgkin’s lymphoma. While advanced, the prognosis was good, but we really needed to act fast: without treatment, I’d make it to Easter but he wouldn’t like to bet on the end of May.
Read more about Nodular sclerosis classical Hodgkin lymphoma (NScHL)
Treatment
I had two choices: 6 cycles (12 doses) of ABVD, or 4 cycles of eBEACOPP. As a biologist with experience in histology and pathology, I had a pretty good knowledge of my type of cancer and the mechanism of action for the chemo drugs in each regimen. I can’t imagine going through the ordeal without that knowledge, but in some ways knowing that much about potential late effects was a double-edged sword. We settled on ABVD as there were a few more knowns in terms of side effects and late effects, and I started chemo in mid-March.
As a biologist I knew what to expect objectively, but actually experiencing it was a whole different kettle of fish.
My nurse for the first chemo session was lovely and, as we discovered, had previously treated a good friend of mine years before at another hospital. The anti-nausea tablets an hour before chemo quickly killed my appetite for the rest of the day. Then the chemo itself started…the doxorubicin left an awful taste in my mouth. The dacarbazine caused an intense stinging burning sensation along the vein, which meant the infusion had to be slowed and run with concurrent saline as well as my nurse laying heat packs along the path of that vein in my arm. I remember feeling tired but not too bad after the first session. When I woke up the next morning, I felt terrible but touched my neck and the tumours I’d felt for months were half the size or even smaller than they’d been the previous day. It was a massive relief, but then it hits home just how toxic those chemo drugs are!
Those first few days were a real adjustment. When I tried to go for a walk, I was lucky to make it around the block without my leg muscles fatiguing to the point I couldn’t go on – previously I’d have a 4-5km daily nature walk. I used to take 4 tablets a day before I started chemo, now I was taking 12 with breakfast alone. (And this was before any side effects had started) Some of the supportive medications caused unpleasant side effects of their own which had to be treated with more medication. When my hair started to fall out, it looked like someone had been shaving a gorilla in the shower each morning! (I now have more beanies than I ever imagined owning)
The side effects were dreadful, but the one saving grace was that with ABVD, you can kind of expect to follow the same pattern and timing of side effects with each 14-day cycle, but the side effects will get a bit worse each subsequent time. For me, my appetite was low for days 2-4 of each cycle, gastritis kicked in for days 2-10, mucositis days 3-8/9, constipation days 1-6 (but not at all if I got out ahead of it with enough medication), peripheral neuropathy in my fingers never completely disappeared but was worst days 3-10, and similarly the brain fog waxed and waned. The fatigue never stopped, some days I just lasted a bit longer before it took me out. My sleep pattern was disrupted at many points of the chemo cycle too. Most of the side effects were well controlled with medication, though it took quite the cocktail to balance out some of them. After the first couple of weeks of chemo, I was able to do a gentle 3-4km walk most days.
My boss was very supportive, and I was able to work part time at my own pace from home. Being an academic, I didn’t last long on days I did work as the concentration really drained my energy, so I learned to work mostly mornings and for only 2-4 hours with breaks. Luckily, I had some hobbies I was able to continue, which helped maintain some semblance of normality as well as keep me distracted: I managed to play my violin most days, which the cancer centre physiotherapist is sure helped with the peripheral neuropathy; and I took a camera with me on my daily walks and, at the end of the whole chemotherapy regime, I chose the best nature photos taken between starting chemo and having my post-chemo PET scan and compiled them into a self-published book. I also set some goals for myself post-chemo that aligned with my new outlook on life and my more-focused priorities.
Recovery
Two weeks after the end of my chemotherapy in September, I had a PET scan to check if the complete metabolic response observed after the second cycle had been maintained – thankfully, it had. 6 months of ABVD is a “really tough” slog, as my oncologist put it, with some spicy side effects so it was a massive relief to clear that hurdle and be able to start focusing on recovering.
After about a month, the last of the supportive medications I’d needed during chemotherapy had been withdrawn. The peripheral neuropathy was almost gone by then as well, but the brain fog and fatigue were still impacting my daily life. By late November, my partner and I made it on the short interstate trip we’d set our sights on as a post-treatment goal – I think she was more excited than I was! I had to pace myself and take lots of breaks each day, but it was great to unwind and have a change of scenery.
Just before Christmas, I made steps towards one of my goals – getting my private pilot licence for planes – and got back in the cockpit with an instructor (once I was medically fit, of course).
The recovery is frustratingly gradual, and it’s not until I compared myself to the me about 4 weeks prior that I could notice a difference.
Now in March 2023, it’s been just over 6 months since my last round of chemo and just over 12 months since my initial diagnosis. My hair is back (albeit a bit thinner and greyer), I have no peripheral neuropathy, I’m exercising daily to build towards my pre-cancer cycling performance, and most days I feel pretty good.
I still have to pace myself to avoid bottoming out due to fatigue, so am working part time and often from home. As well as the fatigue, I still have some mild deficits with word retrieval and short-term memory. They’re likely to be a permanent late effect of the chemo but, thankfully, don’t impair my daily functioning. I have PTSD from the whole experience as well, which is a potential outcome people often don’t think about, but we’re making good progress on it.
I know I’m a good way off the 5-year mark without recurrence before we can say my lymphoma is cured but, having had such a close brush with not being here, I’m not letting uncertainty stop me living life and planning for the future.
Legs Out For Lymphoma
From the week of my first chemo when a cancer nurse referred me to them, Lymphoma Australia have been there with me during my cancer journey: they provided information packs at the start to help my family and friends understand what was going on, and I had regular check-ins and advice from Lisa, one of the lymphoma care nurses, through the chemo and now into my ongoing recovery.
Lymphoma Australia can’t support patients without funding, which is why I was aiming to give back by participating in the 2023 Legs Out For Lymphoma if I was well enough. For each week of Legs Out, my challenge to myself is to cycle 80km each week: 1km for each of the ~80 subtypes of lymphoma. 80km in one bike ride didn’t take much out of me before cancer, but these days I’m finding 80km a week to be a pretty big effort!
Get involved – you can sign up and take part at www.legsout.org.au
