Personal Experience
Komal's Story
33 year old Komal talks about her diagnosis of Waldenström’s macroglobulinaemia, treatment, and the mental challenge of being on active monitoring.
In 2020, and while the world was in lockdown, I was in Manchester looking for a job. My family moved to Manchester from London, although I am originally from Denmark. I set up a small business, Khennaartist (since 2015) doing henna. I won an award for Best Henna Artist at Oracle Awards 2022.
Despite only being 31 at that time, I wasn’t well. I felt tired a lot of the time, had really heavy periods and regular nose bleeds that weren’t stopping. I was also struggling with pins and needles, migraines, feeling light-headed or dizzy a lot of the time. I was also losing some of my hair and losing weight without trying to, as well as itching a lot and night sweats. In short, I felt my body was collapsing. I had been told I had mild anaemia.
Things were now so bad that I knew something wasn’t right and my sister said I needed to go to be checked.
I had some blood tests done and received a call shortly afterwards saying they looked abnormal. They explained something about my red blood cells, white cells and platelets being low and that they were consulting with a haematologist about the results.
At this point, I had no idea what they were saying to me, but I asked my sister to come along with me to an appointment with haematology that had been arranged. On examination they said my spleen was enlarged which explained why I had struggled to sleep on one side. I was surprised when they said I needed a bone marrow biopsy as well as other tests including an ultrasound and PET/CT scan.
I am an anxious person anyway but found all this information overwhelming. I said I couldn’t have a bone marrow biopsy without being under general anaesthetic. In the end I had to put this request in writing as it isn’t something they would normally recommend.
While waiting to have a bone marrow biopsy, I met a nice lady who spoke about her cancer. This was the first time cancer was mentioned and it shocked me. I thought I had a blood disorder.
Waiting for the test results was difficult and it was explained that I was producing large amounts of an abnormal antibody called IgM. I also had multiple tumours in my stomach and my spleen which was enlarged to 31cm. It was explained to me that I may have lymphoma which is a type of blood cancer.
I was diagnosed with Waldenström’s macroglobulinaemia in 2021. Whilst it usually behaves like a low-grade or slow-growing non-Hodgkin lymphoma, mine was transforming to a high-grade.
I was overwhelmed by everything that was being said to me. Because of my age they talked about fertility and details about what would happen next. It wasn’t sinking in, but I felt so sad as it felt like all my dreams were broken.
I was given six cycles of R-CHOP chemotherapy every three weeks. I was given a lot of pre-medication to prepare for the chemotherapy.
The first cycle of R-CHOP didn’t go well. Rituximab made me feel like I was having palpitations and I was in pain. I was sick, despite the anti-sickness tablets I had. I felt like the treatment was killing me and spent most of the time crying as I didn’t want my body to suffer any more. At that point I felt like giving up and that I couldn’t do it any more.
My sister told me I could do this and said to count down the chemotherapy cycles. Surprisingly, the second cycle was much more manageable, although I distinctly recall a metallic taste. By now my hair was falling out and it was very difficult to watch. As I wear a hijab, no-one could see it but there were other signs, like when my eyelashes and my eyebrows just dropped out.
The diagnosis and treatment hit me hard; I was traumatised by what had happened to me and it’s taking me time to understand and accept what has happened.
I had to stop my henna business during treatment, but once it had finished, I started it up again. It calms me down and helps me enormously to have something else on my mind.
During this time my family have been so supportive, although I really wanted to maintain my independence even at such a difficult time. But I recognised that I needed my family from time to time. I also found it a time to learn who your friends are and was surprised that my closest friends stayed with me through everything.
“Although my cancer has taught me to love myself, I’m struggling to come to terms with living on active monitoring.
Looking to the future, I know my Waldenström’s macroglobulinaemia cannot be cured and I won’t be told I am in remission which is really difficult to come to terms with. I have been stable for two years and have regular check-ups, but I am struggling with being on active monitoring plus living with side effects from chemotherapy. I don’t know what is going to happen and in my mind I almost want to be receiving treatment. I have asked if there are any clinical trials I could be on, but for now they are happy for me to be on active monitoring.
I have had a PET/CT scan recently which shows that I still have lymphoma in my chest, but it is reduced, and my spleen is now in the normal range. My medical team have talked about the possibility of me needing a stem cell transplant some time in the future.
I worry that my diagnosis has an impact, not just on me, but on my family. I have family and friends in Pakistan and Denmark, and travel outside the UK may be more complicated now, especially with travel insurance.
However, this experience has made me learn to love myself and I have shared my experience with others on my YouTube channel komalvlogs so that no one else feels alone with this. I have found the Lymphoma Action support group really helpful and am learning to look after myself physically and mentally.
Did you know?
Waldenström’s macroglobulinaemia (WM) is a rare type of lymphoma.
Fewer than 400 people are diagnosed with WM in the UK each year. A WM registry was developed in 2021 to collect real world information about people affected by WM in the UK.
