Jana
Nothing is different and everything is different after a diagnosis of diffuse large B-cell lymphoma.
The word ‘stubborn’ or ‘obstinate’ are often associated with negative connotations, suggesting perhaps pettiness of mind, ignorance and presumption. I believe that in the face of adversity, they can also mean resistance and defiance.
In April 2023, and at the age of 44, I started feeling an abdominal pain. It was a dull, persistent kind of pain that kept steadily growing. I went to see a consultant gastroenterologist who diagnosed the pain as a case of mild gastritis.
A few weeks passed and I was getting worse. By the middle of May, the pain was stopping me from sleeping and I was reduced to eating mostly nuts and miso soup. I am an avid hiker but found I could now walk only a few steps at a time with the support of a trekking pole. I struggled to even stand straight and sat hunched forward. A rash showed around my legs and arms but otherwise there were no other symptoms.
At one point, I was in so much pain that I called an ambulance, but after checking my vitals, they said I should be fine with some paracetamol. By now the consultant gastroenterologist, ambulance, and several medical specialists had told me that it will pass with time. I knew that something was very wrong and I felt desperate because nobody seemed to take me seriously.
A few days later I was feeling so unwell that I ended up in A&E and was admitted to a hospital. It was there that a number of tests were carried out, including a biopsy. A few weeks later, in mid-June 2023, I was diagnosed with diffuse large B-cell lymphoma, stage 4. The lymphoma was around my liver, spleen and pancreas. My symptoms were not typical and for that reason I kept getting misdiagnosed.
In a sense, the diagnosis was not a shock. I had been so unwell for weeks that I instinctively knew that this was something serious. Now I felt almost relieved because I knew what was wrong and finally could deal with it.
Just two days later, I started on six rounds of treatment with R-CHOP chemotherapy. I was also to be given two rounds of high-dose methotrexate because of the extent of the cancer and the risk of it getting into my central nervous system and to my brain.
Although I felt really unwell going into it, as soon as the treatment started, I felt better. The pain started subsiding quickly and gradually I recovered my ability to sleep through the night and to eat normally.
The first two rounds went well, especially because of the change in how I felt. But some days were better than others and some rounds of chemotherapy were better than others. At times, the fatigue was awful, but I felt so fortunate to have a supportive partner as well as my mum to look after me. She had come over from the Czech Republic for four months while I was going through treatment.
I wanted to look after myself, as I thought this would help minimise any side effects. I started doing exercise, beginning very gently, but gradually pushing myself more, albeit at my own pace and only as much as I could manage. Exercise helped me both physically and mentally and really kept me going. Having a small garden was also a great motivator to stay active.
I finished treatment in November 2023 and got the all clear. Now I felt lost. I had done it, but I think I was left with post-traumatic stress (PTSD). I saw a therapist and had a few sessions, as I felt anxious the lymphoma would return. Talking through my concerns really helped me to come to terms with all that happened, and I began to move on.
I decided to focus on getting healthy and building up on the exercise. In my mind, I figured that if the cancer does come back, I want to be in the best shape and condition to fight it. I latched on to this idea and I joined my local gym. I started swimming and doing tai chi as well as making sure I ate well and slept well.
I am a lawyer and had stopped working during my treatment but was now thinking of going back to work. I also decided this was an opportunity to do the travel I had always hoped to but never had the time to. My partner is from Australia, so we decided to visit his family. It was a long trip but exchanging the British winter for Australian sunshine gave me a new lease on life. During my treatment I had dreamed – and planned – this trip. It had kept me going while the bags of chemotherapy dripped into my veins, and I listened to the endless beeping of the IV. I was fortunate that I had an existing travel insurance through work, and I studied the small print closely to make sure it covered me completely. I also discussed it with my medical team prior to making any reservations.
The trip was fantastic for both me and my partner who had gone through this with me. It was a time when I got more active and grew in physical energy and self-confidence. I managed to enjoy life again.
I am now back at work in the same job I had before, working with the same people. In some ways nothing is different and yet everything is different. I am adjusting to the new reality. But I now also appreciate the smaller things like little gestures made by people, a blooming garden and a sunny morning. I guess I’m just happy to be alive.
Looking back, if it wasn’t for stubbornness, my story could have had a different ending. For me it was a fuel that got me through some dark days and pushed me to overcome frustration and discouragement. Life is very precious. Sometimes it takes that bit of stubbornness to fortify us on our journey.