In late December 2020, I applied to become a living donor for kidney transplantation, as a neighbour needed a kidney. The first hospital appointment involved taking many blood samples. That night, there was a phone call from a doctor at Aberdeen Royal Infirmary, UK, asking if I felt well. “Yes”, I responded, privately thinking that my samples must have been mixed up with someone else’s. After all, I felt fine and hadn’t noticed anything amiss.

I was asked to return to the hospital for further tests without delay. Hints were being dropped here and there by the myriad of medical staff whom I saw the following day. Everyone was being very kind. Almost too kind. Between the evening phone call and the moment of diagnosis, I had my suspicions. I’d never heard of a doctor phoning a patient like this. Something very serious, such as cancer, could be the reason. Being a patient involves being very patient. There’s lots of waiting time. This gave me the opportunity to do an online search. I had enough information for me to work out, that leukemia was the most probable disease.

I was alone in the room when the consultant, accompanied by a specialist trainee doctor, entered. He told me the initial tests were not a mistake. I was diagnosed as having acute myeloid leukemia (AML). He covered, step by step, all the things that as patients, we are advised to ask. While it’s a dizzy moment—a shock, I felt neither scared nor angry. I felt matter of fact. People get cancer. I am one of those people. I was curious about what this entailed.

At the time, I was director of my own consultancy firm. I spent the 2 days before Christmas frantically cancelling all my work, issuing invoices for work completed, in addition to telling my family. I had work booked for 15 months in advance. I didn’t have time to think about the diagnosis. Fortunately, I had enough capital in my business to manage the financial hit and not to worry about this aspect of my life.

I set up a CaringBridge webpage, which literally takes a few minutes. In hindsight, it was the best thing for communicating. My parents, husband, and many other relatives don’t “do” social media, so I directed all discussions via that webpage. Also, by knowing everyone who wanted to help, I deliberately asked for advice about good books, films, and music. My family was astonished by the kindness and volume of responses to the posts. It also meant that every well-wish and enquiries were in the “one place”. I wasn’t overwhelmed with enquiries in other ways; you can see my CaringBridge webpage here.

The first round of chemotherapy began on the New Year’s Day of 2021. The second lockdown had begun in earnest. I was allowed no visitors and confined to my room for 24 hours a day. The only times I could leave were for procedures such as scans or X-rays. All the staff wore face masks. I have never seen the full face of any person that has treated me. I have never been able to shake their hand or hug them. I find this tremendously sad.

My AML genetic mutation is rare—IDH2R¹⁷². Even though I am young enough for a stem cell transplant, there is no full tissue match on the worldwide donor register. My son and sisters can be haploid donors. After four rounds of chemotherapy, I was measurable residual disease (MRD)-negative and chose to “watch and wait” over a stem cell transplant. It was brilliant to be back at home. One thing I started doing was taking video clips of “normal” things, as well as photos. This included my local river walk, visits to the sea, a multi-day solo hike in Cumbria, UK, and much more. This meant that if I ended up back in hospital, I had living memories of being outside, in nature and in places I love. I returned to working part-time.

In January 2021, I relapsed. The FLAG-IDA (fludarabine, cytarabine, granulocyte colony-stimulating factor, and idarubicin) chemotherapy treatment was not effective. I remained MRD-positive, and without a full human leukocyte antigen (HLA) tissue match. Furthermore, post-chemo complications left me with bowel incontinence. After much soul-searching and careful thought, I decided, again, not to have a stem cell transplant. Instead, I’m on experimental treatment that involves azacitidine and venetoclax cycles.

I made myself redundant, sold my business, and have taken early retirement. I’m indebted to my financial advisor who over the years ensured I had the right insurance that included critical illness cover, and good ethical pension policies. I love being retired, even if it is through ill-health; AML has enabled me to slow down, enjoy life, spend time with husband, family, and friends.

I am grateful for every day I live. I am especially grateful for excellent health (aside from the AML), which enables me to have a high quality of life.

What did you think of this patient story? Let us know at ses_knowaml@scientificeducationsupport.com