My symptoms started in 2020 with fatigue, nosebleeds, hair loss, bald patches, loss of eyelashes, and weight loss. I was also diagnosed with anaemia and was given iron tablets by my GP. My symptoms worsened in 2021.
In March 2021, my GP arranged for blood tests, which resulted in a phone call informing me that my blood tests were abnormal. She checked further and discovered that I had an enlarged spleen. She then referred me to a haematologist at the hospital in Manchester.
The symptoms I experienced included bruises, night sweats, itchiness, nosebleeds that stopped after 15-20 minutes, episodes of collapsing and fainting, hair loss, dizziness, headaches/migraines, fevers and chills, a sore throat, easy bleeding, and widespread bone tenderness.
In April 2021, my haematologist arranged an ultrasound scan, bone marrow biopsy, and CT scan to rule out cancer. I was diagnosed with Waldenstrom’s macroglobulinaemia at the age of 31. Lymphoma was significantly found in my bone marrow, and multiple large lymph nodes were detected in my abdominal area, along with an enlarged spleen (31 cm). They suspected I was transforming into a high-grade.
Before starting chemotherapy, a PET-CT scan was conducted at another hospital in May 2021.
I received 6 cycles of R-CHOP chemotherapy at the hospital in Manchester from May to September 2021.
To be honest, I never imagined in a million years that I would be diagnosed with Waldenstrom’s macroglobulinaemia. It took me months to accept the diagnosis.
I was traumatised by the chemotherapy, as it was intense and targeted my high-grade Waldenstrom’s macroglobulinaemia. It was difficult at first, and I wanted to give up, but with the support of my family, I overcame my fears and completed the chemotherapy.
After completing chemotherapy, I moved to another hospital in Manchester, where they conducted a PET-CT scan. The results showed that the chemotherapy had given a mixed response. I was placed on active monitoring with regular check-ups. In 2022, I was told that I was in good partial remission, meaning my cancer was stable and not progressing.
In 2023, I sought further advice through a telephone appointment with Dr. Shirley D’Sa for a second opinion from London. She was a huge relief to me and discussed the possibility of needing a stem cell transplant sometime in the future. She advised me to have another PET-CT scan and bone marrow biopsy (which I opted out of). The results from the PET-CT scan in July 2023 showed that I still had lymphoma in my chest, but it had reduced, and my spleen was now in the normal range. I also attended my first European WM Patient Forum in Birmingham, where I met Dr. Shirley D’Sa in person and connected with other medical professionals from hospitals like The Royal Marsden
I moved my care to Clatterbridge Cancer Centre in Liverpool in March 2024. In October 2024, my haematologist mentioned during a telephone appointment that I am in remission, meaning my cancer is stable and not progressing. I am living with the side effects of chemotherapy.
I found the WMUK support group in my region, North West, very helpful in learning to look after myself both physically and mentally.
I share my cancer journey on online platforms because I want to help others by sharing my story. I hope that by telling my experience, others may find it easier to cope and feel less alone.
