19 Sep 2024

Celebrate what you can do: Fiona’s story

“In summer 2018 I started to feel very run down,” said Fiona, now 64, who lives in Smethwick in the West Midlands and works as an assistant head of sixth form at a high school. “It was beyond normal tiredness, it was extreme. I went to my GP and asked for a routine blood test. I couldn’t get an appointment to find out the results so the GP told me over the phone the blood tests showed I probably had chronic lymphocytic leukaemia (CLL) and would need to see a haematologist.” 

Fiona had an appointment at Queen Elizabeth Hospital in Birmingham in November, but this was changed to December. Further blood tests were taken. On 22nd December 2018 Fiona, who was 58 at the time, was officially diagnosed with CLL.

“Looking back now, I had developed an unusual rash on my body ten years before I was diagnosed. They mentioned at the time it could be leukaemia. However, my bloods did not show anything,     

Fiona continued with “life as usual” after her diagnosis

“When it was confirmed, I was still in shock. It didn’t really register. I didn’t know what it all meant. The strange thing was I looked very healthy – and still do. People don’t know how to react and often don’t believe I have cancer. I was put on a ‘watch and wait’ treatment plan which required regular blood tests. In a way I wanted to know more about it but also really didn’t want to. I was a bit in denial although I knew I had an increased risk of infections and that’s what I was most worried about.”

Fiona continued with life as usual, which included her demanding job in the school along with caring for her adult son, who is autistic, and her husband, who has health issues. Then in 2020 the Covid pandemic arrived.

“I went into isolation because I had a higher risk of infections. I continued working hard – making hundreds of wellbeing calls to students. At that point, I got a buddy from Macmillan Cancer Support and started to read a bit more about CLL. When I eventually went back to work at school, I wore a mask and worked in one room. My health was fine, and I only needed to have bloods taken and see my consultant once a year.  I was so pleased that my chronic illness was slow-moving.  Life carried on. I also became a buddy for Leukaemia Care as this organisation had supported me and I wanted to give back and befriend others with CLL.

“In February 2022 I had a bad chest infection which meant whole month off work. I was concerned as I was never off work. I recovered from this but, a year later in February, the same thing happened. I had another month off and returned to work, but I did feel like I didn’t have the same energy that I had before and found my job tiring. But I thought it was my age. Then again in December last year I had another chest infection. With the last one I took three loads of antibiotics and couldn’t shift it. I eventually went back to work in January 2024 but was incredibly tired, had a pain in my groin and struggled with cognitive problems. It’s a big school and I found walking around it incredibly difficult. Eventually I went off sick, went straight back to the doctor and asked for a blood test.”

Fiona’s white blood cell count had increased, and her haemoglobin was low. In April 2024 she got yet another chest infection. She was referred to Queen Elizabeth Hosptial, now under Professor Paul Moss OBE, who found a swollen lymph node in her arm pit and that her CLL had started to develop. 

“The fatigue was chronic, and I noticed I was bruising more. I knew I would be unable to return to work. I am so very grateful to be under Professor Moss. He’s amazing and truly an expert on CLL. He is supportive and understands my desire to retire from school. I have loved my job in supporting young people to become the best version of themselves, but I also acknowledge the chronic tiredness and infections are affecting me. I don’t have the stamina for the job anymore. I used to be so busy with my family, my house and volunteering as well. But I have had to really slow down now. My husband, who understands how the fatigue affects me, does the shopping and cooking. 

“My mental health is pretty good. I have a hotline to the hospital if I have any worries. I go to a Macmillan online support group and there are lots of other sources of help and support online too. I go to Leukaemia Care webinars too. I try and stay off Google.

“The future is uncertain. It’s hard because I still look so healthy, although I have huge bruises now. But unless people see them, they don’t believe I’m sick and don’t know what to say. 

“Living with something that can’t be cured is horrible, that’s the thing. It’s so hard to not be able to do so much round the house without getting so tired. I am trying to work out what the future holds. It’s not watch and wait, its watch and worry. 

“You can’t cut this out, it’s in your blood. You have no control over it. Of all the cancers it’s the sneaky one. But there is hope. Celebrate what you can do not focus on what you can’t do. I’m very proud of how I’ve coped.

“I know there is support out there, so you are never alone. My faith in God keeps me grounded and I have support from my family and my church, but I would encourage anyone facing this cancer to find an avenue, whether support group or family. To be honest, for me, I want to live the best life that I can despite having CLL and facing treatment if it’s needed.”

Fiona is proud of how she has coped and encourages others to live the best life they can