Colin’s Story: “I just went with it”
How It All Began
I was diagnosed with Marginal Zone Lymphoma (MZL) after a routine blood test flagged anaemia. It was during my annual check-up, and my doctor referred me to a haematologist. That’s when I found out. I had no obvious symptoms at the time, so it came as quite a surprise.
For the next four years, I was on “watch and wait.” I knew I had lymphoma, but treatment wasn’t immediately necessary. When my levels eventually dropped to the point where something had to be done, I just went with whatever was prescribed.
The Treatment Journey
I had 12 rounds of treatment in total, two days in a row, every month, for six months. Thursdays were a combination of Bendamustine (chemo) and Rituximab (antibodies), and Fridays were straight Bendamustine. Thankfully, I didn’t experience severe side effects. The worst of it was fatigue after the first round and losing my taste buds for a couple of months before they gradually came back.
I remember going to a café about a week after my first treatments. It was really my own fault, I didn’t give due consideration to what my haematologist had told me about my immune system being compromised as soon as treatment started. I caught an infection that quickly turned into a fever, which resulted in a week in hospital with two additional fevers and heart palpitations. It was lucky that I had a medical alert card issued by my treating centre, which detailed my condition and helped me access emergency care quickly.
My treatment centre was close to home, so I didn’t have to travel far, which made things easier. However, the biggest adjustment was having to stop work immediately. I used to travel for work, but with my immune system compromised, that wasn’t an option. I also avoided large gatherings and family events for the six months of treatment, just to be safe.
Finding Support
My treatment team was incredibly supportive and suggested I connect with Lymphoma Australia. I took their advice and found it to be a fantastic resource. I used the nurse hotline, received the patient treatment pack, and attended three face-to-face events. The nurse hotline was invaluable, I honestly couldn’t speak more highly of the support I received.
I rang Lymphoma Australia within a month of starting treatment because my taste buds were reacting badly to hot foods like chilli, and I couldn’t use mint-flavoured toothpaste as it stung the roof of my mouth. The hotline nurse assured me these were common side effects and suggested a few toothpaste brands I could use without pain. That was really helpful.
I spoke to the hotline nurses about five times during my six-month treatment. I always enjoyed the experience, it was like talking to a family member. They spoke with empathy and reassurance, and they were truly “there for me.” They were always respectful and answered any question I had, no matter how basic it seemed.
I really enjoyed the face-to-face events too. I met new people going through similar journeys, though everyone’s experience was different in terms of treatment, results, and side effects. It was invaluable hearing other people’s stories, it helped reinforce my own feelings and expectations for the future. It also made me realise that people from all walks of life go through this, and each has their own perspective on accepting what you have and moving forward.
The Lymphoma Australia nurses at my first meeting suggested the Lymphoma Down Under Facebook group, which has been a great way to connect with other lymphoma patients.
The patient pack was fantastic and so gratefully received. The printed information was an invaluable source of knowledge about lymphoma and dietary considerations. The products were great, especially the sensitive skin lotion, which really helped with the dry skin caused by chemotherapy.
Advice for Others Facing a Lymphoma Diagnosis
When I was first diagnosed, I was a bit stunned, but I quickly accepted it and focused on following the treatment plan. For me, it was about keeping a positive mindset and not giving in to fear.
If I had any advice for someone newly diagnosed, it would be simple:
Just dig in and start the treatment as prescribed. It’s far better than the alternative.
Get in touch with Lymphoma Australia and join the Lymphoma Down Under Facebook site. Make the most of the help that’s out there. When I was diagnosed, and later when I started treatment, my mind was spinning. Even though I wasn’t truly alone, it sometimes felt that way. My haematologist urged me to register with Lymphoma Australia, and every time I spoke to the hotline nurses, I felt connected and supported. They were always so positive and helpful. Lymphoma Australia certainly made my journey easier.
Looking Ahead
Now that I’ve completed treatment, I feel incredibly fortunate. While the initial diagnosis was a shock, the support I received, from my medical team, my family, and Lymphoma Australia, made a huge difference.
For anyone going through this, you’re not alone. There are people and resources out there to help, and sometimes, just having someone to call when you have a question can make all the difference.
