03 Aug 2023
How hot flushes, a chest infection and tiredness led to Leila’s CML diagnosis
Many women in their 40s and 50s initially mistake their leukaemia symptoms for the onset of menopause. Leila Richardson put her hot flushes down to changing hormones, and it wasn’t until her health started to plummet that she pushed for more tests. The 46-year-old mum of three, who’s been married to husband Dominic for 15 years, lives in Corby, Northamptonshire. She works as a Clerical Officer at Kettering General Hospital in the Medical Records Department.
“Looking back, I would say my symptoms started in 2020 although I didn’t know they were symptoms at the time. I started getting hot flushes in early summer but put it down to age and didn’t really pay it any more attention. I mean every woman goes through the menopause, right?! The hot flushes continued throughout 2020 and I had a chest infection later in the winter. By 2021 I was feeling tired but put that down to being a full-time working mum of three teenagers and just carried on as many of us do.
“Like a balloon inflated under my ribcage”
“But in July of 2021 I woke up one morning and it was hard to catch my breath. After many unsuccessful attempts to make a GP appointment, I ended up at our local Urgent Care walk in centre. It was found that I had pneumonia and I was given antibiotics that did the job and cleared the pneumonia up. But about a week later I had a feeling like a stitch on my left-hand side under my ribs. Again I carried on as normal. But the discomfort got worse and was making it difficult to sleep as I couldn’t get comfortable. It felt like I had a balloon inflated under my ribcage.
“Due to it being right in the middle of Covid and lockdown with every attempt to get a GP appointment it was always fully booked and I was told to try again tomorrow. I eventually managed to get an appointment THREE MONTHS after the discomfort had started. By this time, I was managing on one to two hours of sleep a night and most of that was in a chair downstairs, as I couldn’t lay comfortably in bed. I was upset all the time and I was so tired.
“At the appointment I was asked ‘What seems to be the problem?’. I explained, and then was asked ‘And what do you think is wrong?’. ‘I don’t know’, I replied, ‘that is why I am here’. I was then asked, ‘and what would you like us to do?’. ‘Fix me please’ was the only reply I had at the time, as I felt so awful. Honestly at this point I broke down in the doctor’s surgery. I hadn’t got the energy to come back at such unprofessional behaviour. They eventually agreed to a blood test, but said I would have to book it myself.
Feeling let down
“I went home feeling very let down. I had received no reassurance that the doctor would find out what was wrong or help me to feel better. I felt like an annoyance and an inconvenience – not how anyone should feel when attending any appointment. However, I booked the blood test – on 31st December 2021, which was three months ahead. But what choice did I have.
“The afternoon after I had taken the test I received a call from the doctor’s surgery telling me there was a problem with my blood. When I enquired what the problem was I was told ‘I don’t really know but can you get to A&E – they will explain when you arrive’.
“Obviously without any other information my brain went into overdrive, and I panicked. But after speaking to my supervisors and calming down they sent me across to A&E. It was very busy in the waiting area but eventually I was called to a triage room, and the doctor went away to find out my blood results and what was happening. Meanwhile they had put in a cannula and taken more blood and my temperature and my blood pressure.
“All of a sudden I was called and asked to go to a separate room off of the main waiting area and I was given a cup of coffee and a biscuit and was told the doctor would be with me very shortly. I felt panicky and very on my own.
“You’ve got this”
“Then a lovely doctor arrived. Although he looked concerned, and explained that my white blood cell count was astronomically high (259,000 when it should have been between 4,500 and 11000) and they thought I had chronic myeloid leukaemia. He said a haematologist was going to come and talk to me but first he was going to arrange a CT scan.
“Within 15 minutes I was in the CT scanner absolutely sobbing. I couldn’t help it the tears just came. Then the CT Nurse leaned over me and said ‘God only gives us what we can cope with, you’ve got this’ and it helped.
“I was taken back to my separate room. The haematologist was also lovely and kind and explained everything to me so I understood what was going on. The reason for my discomfort was that my spleen, which is normally around 10-11cm, had increased in size to 29-30cm. This was also the reason I had lost my appetite and felt full all the time.
“It was explained that due to Covid although they would normally admit someone in my situation, they were not going to as I was very vulnerable to infection. They started me on the chemotherapy drug Hydroxycarbamide immediately and I was sent home with anti-sickness tablets and other medication. I was to return on 4th January to discuss my treatment plan and arrange a bone marrow biopsy.
Tears and lots of questions
“I told my husband and daughter first and then told my sons. There were a few tears and lots of questions, but I have the most supportive family and I couldn’t have got through without them. I explained to my husband and kids if anyone had a question just ask me and if I can’t answer I would find out because it was new to all of us, and any question was a valid question. Throughout my treatment I had access to the loveliest nurses who never made me feel silly if I rang with a question and were always kind.
“New year was a bit flat as you can imagine, and then I returned to Kettering General Hospital on 4th January 2022. More bloods were taken, and the haematologist decided that he would also do the bone marrow biopsy at the same appointment. I absolutely wasn’t prepared to have it done and I think that was a good thing as I can safely say I am in no hurry to have another any time soon. The haematologist and the nurse were lovely though and promised not to tell anyone about my language during the procedure.
“It was decided that I would start on another chemotherapy drug Imatinib 400mg and I would take it at dinnertime with my main meal along with my anti sickness tablet.
Difficult side effects
“My first three months on Imatinib were very hard and I felt like I would never feel better. I had bone pain, nausea, extreme tiredness, headaches, weight gain, high anxiety, extreme breathlessness and also odd symptoms like painful fingertips and pain in the soles of my feet. Slowly though the side effects did settle down and I eventually went back to work on phased return and then full time work. I have a very understanding team of colleagues at work and my supervisors have been amazing with what has happened to me.
“I had regular blood tests every week for one month, then every month for two months then every three months. But although my blood results were good, and my numbers were coming down it, wasn’t happening fast enough. I had tolerated Imatinib well for 15 months. But at my April 2023 appointment it was decided that as I still had quite substantial pain in my legs and my anxiety was high and I had gained a lot of weight (20 kg) I would move to Dasatinib and see if this improved my bloods further and helped me with my side effects.
“I started Dasatinib in April 2023. My weight is more manageable, I still have leg pain and tiredness but in manageable quantities. Mentally I feel happier too. I am still extremely breathless and struggle to walk very far but I try to stay as active as possible and swim 40 lengths twice a week.
“Honestly, I can say life has been a rollercoaster for the last 18 months and I feel like I am just along for the ride. With CML you can only take a day at a time, rest when you need too, eat well and have a good sense of humour and support network. Am I the same person I was 18 months ago? NO, and I may never be the old me, but I am a new me and I am adapting to my new situation and trying to live the best life I can.
So, bring on the next 18 months, I’m ready.
“We all know our own bodies. Better than anyone else. If you feel something is not quite right – tiredness, bruises, pains you didn’t have before – please please push for a blood test. If I hadn’t, I would never have known I was seriously ill. It is so important that you make yourself heard and get it sorted as soon as possible.
“It’s a very hard illness that so many people don’t understand and it takes so much out of you. But together one bit at a time more people can be educated enough to know what to look for and understand what leukaemia patients need.”
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