24 Apr 2023

Leukaemia is a lonely illness

Lisa Thompson, who lives in Somerset, has a busy job as a primary school head teacher. Like many teachers, she had put her symptoms down to being tired from work and needing her summer break. But in July 2022, just a few months after celebrating her 50th birthday, she ended up feeling so unwell she asked her husband to take her to A&E.

Overwhelming tiredness

“My symptoms included a bloodshot eye, sores and scabs all over my scalp that wouldn’t clear up, pain in my right arm and shoulder, blood in my urine and a strange infection in the my left middle finger that made it swell and seemed to be spreading down into my hand,” said Lisa. “I had such overwhelming tiredness sometimes if I kneeled or squatted I couldn’t get up.

“I made an appointment with my GP initially for my scalp but by the time that appointment came round I also had severe arm pain which I tried to ask about but couldn’t as I’d made the appointment for something else! The GP said they would take some bloods from me, but the appointment they offered was more than three weeks later. I felt worse and worse and eventually I called in sick to work on the Friday as I didn’t feel safe to drive. I tried to get to sleep Friday night but shortly after midnight I gave up and went into A&E.”

“Incredibly gruelling”

Lisa was kept in overnight and seen by a doctor on Saturday morning. Blood tests were taken which showed very low levels. Lisa was admitted to hospital and given a blood transfusion. On Monday morning she was told by a doctor that it was likely she had leukaemia and was transferred to Musgrove Park Hospital in Taunton to the specialist haematology ward. Lisa was diagnosed with acute myeloid leukaemia (AML) on Monday 11th July 2022.

“Initial treatment started that day to try and get the various infections in my body under control so that they could begin chemotherapy and I had blood transfusions and platelets,” said Lisa. “I also had a bone marrow check that day to help with full diagnosis – everyone should know how painful they are and additional pain relief, gas and air etc should be offered as standard, because those checks are agony! My chemo began within a week. Over the course of seven months I received four courses of chemotherapy which were effective but incredibly gruelling. I went into remission after the second course.

“Initially leukaemia is mind blowing. It’s cancer, you know it can kill you and the sheer awfulness of the treatment is enormous. You don’t expect to have to spend so much time in hospital – I was initially in for eight weeks – and you don’t realise how draining that is for you and your family. Even then, you only get a week or so at home before you’re admitted again for the next round of chemo. It starts off very intensely –  seven full days of chemo for 24 hours each day. However I very quickly realised that work would (and did) replace me instantly, whereas you’re the only wife, mum, daughter etc that your family has – so it makes you re-evaluate your priorities and work/life balance.”

Happily in remission

Lisa, who has a son Jack who is studying physics at university, says her family was an important anchor during the long lonely hours of treatment. Her parents spent time with her so her husband could continue working – he would make the 40 minute drive every day after work with clean clothes, food supplies and the crossword!

“We called it bloody leukaemia – me more than most!” said Lisa.  “I regularly listened to a beautiful song called ‘It’s going to be okay’ – it made me cry every time, but gave me hope. Even with a wonderful loving family leukaemia is a very lonely illness. You’re on your own for hours, you have to be in an isolated room for the majority of time as you are so susceptible to illness and it goes on for ever – until one day it doesn’t and your treatment is complete and you are discharged to become an outpatient!”

Happily, Lisa remains in remission. Her hair is re-growing and she has regular bone marrow checks and blood tests. She is returning to work on a phased return soon and is planning a family holiday.

“I’ve learnt that the initial symptoms of leukaemia are a blooming nightmare to try and actually pin down,” said Lisa. “Apart from perhaps the tiredness there is no set of symptoms that are indicative of leukaemia. I support Leukaemia UK and Leukaemia Care’s #SpotLeukaemia campaign to help people know the jigsaw of symptoms, and push for a blood test.”

“GPs should also be much more proactive in checking bloods as it seems to me to be a very simple way of identifying whether something much more serious than the symptoms presented is going on. Maybe A&E or GP surgeries should have a walk in facility whereby bloods can be taken, as the sooner leukaemia is diagnosed the better – especially for AML.”

Read more personal stories from people affected by leukaemia.