My first symptoms started in 2020 and followed in 2021 with itching, night sweats every day, unexplainable bruises on my legs, nosebleeds stopping after 20 minutes, bone tenderness, fatigue, body-collapsing episodes, fainting episodes, headaches/migraines, tingling in the hands, and shortness of breath while walking for 2 minutes as I had mild anaemia. I lost 6 kg. I was having frequent colds, fevers, bald patches, and losing eyelashes. My stomach became enlarged, and I felt as though something was growing inside me. In 2020, my GP told me that the symptoms would come and go, without examining me, and because it was during the COVID period, all GP appointments were over the phone. I was having regular blood tests every month.
I was diagnosed with Waldenström’s Macroglobulinemia on 28 April 2021 in a hospital in Manchester. That date I’ll never forget. Lymphoma was found significantly in my bone, with multiple large abdominal nodes. My spleen was enlarged by 31 cm. It was very overwhelming — my friends and family were all shocked.
My mutation was negative, and my PET-scan staging was 4BX. I was given an option for pre-surgery, which was freezing eggs to preserve my fertility. I was told that my treatment would be delayed if I opted in for the pre-surgery, so I had to opt out. It was a difficult decision to make, but I believe in saving my life first.I was treated with R-CHOP chemotherapy. R-CHOP is a combination drug that includes three chemotherapy drugs, a targeted therapy, and a steroid. This treatment involved 6 treatment cycles that happened every 3 weeks. It was difficult at first. I had to complete my first cycle on two different dates, starting in May and then in June 2021. I had a strange reaction to Rituximab where my heart palpitations were fast. I had to stop my first cycle and continue on another date.
I had severe side effects — not being able to walk properly, was in a wheelchair, mouth ulcers, and sickness despite taking anti-sickness tablets. I was also given another medication. The next day, I took about 14 tablets in total. It was hard to manage the side effects: continual sickness, nausea, metallic taste, fatigue, not being able to eat well, and being on steroids to help with inflammation. During the day I would suddenly pass out, as the R-CHOP chemotherapy wiped out some healthy blood cells, not just cancer cells.I wanted to give up on treatment because I couldn’t take it anymore due to the side effects from chemotherapy. I explained this to my cancer nurse specialist. She told me that there wasn’t any option other than to complete my 6 cycles of R-CHOP chemotherapy for a remission. I managed my side effects well from the second cycle of R-CHOP chemotherapy as my body became familiar with the treatment. However, the third cycle of chemotherapy made a huge difference, as I was able to walk for an hour without feeling breathless — such an improvement in my symptoms. However, I did lose my hair from chemotherapy and I didn’t shave it. It was really difficult to see my hair falling. I felt as if this chemotherapy gave me a second chance. From the fourth to the sixth cycle, the side effects were extreme fatigue and similar side effects from the treatment. On the sixth cycle, I was told by my consultant that I wouldn’t be able to go into remission. It was heart-breaking news. I even wanted to buy a bell for the completion of chemotherapy, as they didn’t have one in their hospital.
I moved to another hospital in Manchester. Following chemotherapy, the PET-CT scan showed a 50% response rate to treatment. My spleen was reduced. I continued to go for check-ups every 3–4 months, and my PET-CT scan in 2023 showed that my spleen was a normal size and my lymph nodes were reduced — indicating that my cancer was stable.
Since then, I haven’t required any additional cancer treatment and am now under active monitoring at the Clatterbridge Cancer Centre Liverpool. I have also been undergoing hormone replacement therapy (HRT) due to post-chemotherapy side effects. My cancer is now chronic, as it has been stable with regular 6-month check-ups from the Clatterbridge Cancer Centre Liverpool.
I am struggling with being on active monitoring. I don’t know what’s going to happen, and in my mind, I don’t want to think of my cancer as having relapsed. I have a disability, which is osteoporosis, and I am having dental treatments.
I really believe people should be advocates for their own health. If you feel something isn’t right, speak to your doctor as soon as possible — you know your body best. This cancer journey made me learn to love myself, and I shared my journey online so that no one else feels alone with this.
