13 Apr 2023

Diagnosed with leukaemia during the Covid pandemic: Mary’s story

Mary’s leukaemia diagnosis and treatment unfolded during the Covid pandemic, making an already difficult journey doubly gruelling.

Mary, 65, from Newbury, was working full-time as an office manager in September 2020, when she started to feel extremely fatigued.

“I became breathless after only a short walk and at night I could hear my pulse beating loudly in my ears,” said Mary. “I thought I might have Covid but tested negative. So I rang my doctor who prescribed blood tests. Because of the pandemic it took me almost 3 weeks to get a test and the nurse who did it told me it would likely be a couple of days before I heard back, as the lab was very backed up.

“I went to bed that night and was awakened at midnight by an ‘Unknown Number’ calling my phone. I didn’t answer and it went to voicemail, but I thought I should see who was calling me so late at night. The message was a doctor from the Royal Berkshire Hospital in Reading, half an hour from my home, asking me to come in to the A&E for further tests. As I listened to the message he called back, so I answered the call and asked him what was going on. He just said I was very anaemic and needed further blood tests. “Can’t that wait till the morning?” I asked – no he said, they are expecting you at A&E now, so I pulled on some sweats and drove myself to the hospital, after calling my two daughters. They both live in the USA and knew I had not been feeling well and had had the blood test.

“I arrived at the hospital at around 1am and checked into A&E and was almost immediately called in to an exam room, where a doctor came in shortly and told me that my blood test indicated that I had leukaemia. A total shock. While I was with the doctor, my daughter texted me “Any news?”, so I asked the doctor if I could FaceTime both my daughters and if she could give them the details. She was brilliant, and spoke to them for around 10/15 minutes, answering their questions and explaining the next steps. They both got on planes the next day and were in the UK within 24 hours.”

Mary was moved from A&E to the Acute Medical Unit where she had more tests including a first bone marrow biopsy. She was told she would need three rounds of chemo, and would be staying in for around six weeks for each round. She was then moved to the Haematology ward where she was told she had AML but caused by the mutant gene NPM1 which was very receptive to the chemotherapy, so they had every reason to believe that she would overcome the leukaemia and return to health.

She added: “In retrospect there were some red flags, but ones that were easily explained away. I had had a recurring tooth infection since late 2019, requiring multiple doses of antibiotics. I had fallen over in my bedroom in May 2020 and my knee had swollen up the size of a football and my whole leg had bruised purple and blue. The breathlessness and fatigue had only set in shortly before, but with Covid around, it could have been that. All these are symptoms of leukaemia.

“Chemo was rough, but even worse were the infections I got after the courses, the night sweats and the endless rounds of antibiotics, which wiped me out, gave me a terrible upset stomach, took away my appetite and left me wanting to sleep all day. Almost as bad was the fact that I couldn’t leave my room. When I felt able I started walking in semi-circular loops around my bed to get a little exercise, and towards the end of my stay I was given a stationary bike in my room. I am generally fit and work out regularly, but lost two stone over the six months I was undergoing treatment. I also lost a lot of muscle so after I got home and had had my vaccinations I took regular walks every day, building up from 10 minutes to an hour over several months, and started very gently from scratch at the gym.”

“I have a very thick head of hair, but after the first round of chemo it started falling out in handfuls, and I would wake up every morning and my pillow would be covered in hair, so although it didn’t look too bad the hair felt dead, so I asked the nurse to bring in her clippers and we just shaved it all off – such a relief. I had coloured it for the previous 15 years, and although I had wanted to stop, I hated the thought of being a badger for months, so had kept the colouring up. It started to grow back quite quickly after the second round and thankfully the third round didn’t include the drug that causes hair to fall out, so by the time I finished treatment, I had a good covering and thought I looked like Barack Obama! Since then, I have kept it au natural and short and love my new look.

“The fact that I didn’t catch Covid during 2020 when I was obviously immunocompromised is a miracle – and I still haven’t had it – touch wood! Once I knew that my chances of survival were good, I just took the attitude that I had to get through the chemo rounds and whatever it brought, but that there was life to look forward to on the other side. Both my daughters got engaged to their long-time partners while I was in hospital, so that really gave me the impetus to endure the treatment and so much to look forward to – two weddings in the summer of 2022!”

Mary ended up staying in hospital for six months. Her daughter moved into her house and worked remotely from there for two months and would come to the hospital twice a week to collect laundry from the ward door and return it clean.

“The first bone marrow biopsy after the first round of chemo showed very good results, and I have had bone marrow biopsies every quarter since my discharge in March 2021,” said Mary. “And now at two years since my discharge am blessed to be completely cancer-free so far. My consultant says that the support I had and my positive attitude contributed greatly to my recovery, but I live every day with enormous gratitude for the care I received at the Royal Berkshire Hospital in Reading and the huge support from friends and family.

“I am back at work full time. My company were amazing at covering my salary while I was away, as I had been with them for ten years, and I was able to go back to the office on a gradual re-entry from July 2021, after three months at home regaining my strength and building up my immunity. I have had both vaccines and four boosters since my discharge and take whatever is offered, as I reckon it’s better to be safe than sorry. Life is precious and I am very lucky to have more to look forward to.”

Discover more personal stories from people affected by leukaemia.