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“First-time mum tiredness” led to early CML find

Published Date: 10 September 2013 Categories: Patients, Carers, Leukaemia

When Michael Loveday took part in the Kokoda Track 70th Anniversary Challenge for the Leukaemia Foundation, it was for a personal that could not be any dearer to his heart - his wife Alex was diagnosed with chronic myeloid leukaemia (CML) in 2009, two days after her 35th birthday.

At the time, the couple’s miracle daughter, Charlotte – their first child – was just 14 months-old and Michael’s biggest fear was that he might be left with a young baby, without a wife.

Like others who have faced a blood cancer diagnosis, Michael and Alex were left feeling “shell shocked”. Initially, they had thought that Alex’s severe tiredness was the result of the sleep deprivation and physical fatigue that comes with caring for a baby.

“I was a first-time Mum and I was struggling with the challenges of that – the tiredness of it all,” said Alex. “But I couldn’t work out why I was struggling so much more than my friends. No-one else seemed to be finding it as tough as I was.

“Luckily, my doctor decided to pursue my concerns with a blood test and I had an early diagnosis. Mine was the earliest CML diagnosis that my haematologist had seen detected and it meant that I could get started with treatment straight away.

“I had thought something was wrong, but I never expected for it to be that (leukaemia). I hadn’t even considered anything as serious as leukaemia. It justified the way I had been feeling though.”

After her diagnosis Alex immediately began treatment with Glivec® (400mg), which she has been taking every day ever since.

The most debilitating side-effect of the medication was nausea, which Alex said was worst during her first year of treatment.

“Now, it’s only if I haven’t eaten enough that I find I will react and have nausea and vomiting,” she said. “I steer clear of spicy food and make sure I eat as well and as regularly as I can.”

Aside from having to process the blood cancer diagnosis, Alex said the other devastating news was being told that she and Michael would not likely be able to have any more children whilst on the medication that saved her life.

Alex, who received the news that she was in remission in July 2010, feels blessed that CML now has a more positive outlook for people than it has in the past.

She describes her condition now as “manageable”. She has not had a break from Glivec® in three years and has “never missed a tablet”. She now sees her haematologist every six months and has quarterly blood tests.

In February, 2010, Alex felt well enough to return to work at Macquarie University three days a week as a Higher Degree Research Coordinator supporting PhD candidates in Early Childhood and Education.

While she still tires easily, she enjoys her job and says it is exciting to learn about the early childhood and education research that may one day benefit young children such as Charlotte.

Having Charlotte in her life has been a significant motivator in Alex’s determination to live well with her disease.

“Charlotte was the reason I kept going – she was my motivation to make sure that I beat it,” said Alex. “I didn’t want to not be around for her – it’s so exciting to see her grow and change. She was the reason I had to get up in the morning.”

Whether it is enjoying family walks through Ku-ring-gai National Park, pottering in the garden, or attending St James’ playgroup if Alex’s energy levels are up, or blowing bubbles or quietly reading a book if she feels too fatigued, the dedicated mum always aims to ensure that Charlotte “doesn’t miss out” because of her own health challenges.

“Sometimes I need to find activities where I don’t have to exert a lot of physical effort,” said Alex. “As soon as I do too much I pay for it – I have to balance it all or it’s no fun for anyone. I have had to learn to manage things because I don’t want Charlotte to miss out.

“There are times when raising a small child is trying, but I try not to let how I’m feeling show when I’m with my daughter. One day when she’s a bit older she will know why.”

From day one, Michael’s steadfast support has also been necessary for Alex to visualise a future beyond CML.

“Michael never wavered in his support and encouragement,” she said. “He made me see that it was possible to get through it. On the days when I felt sad and discouraged, he was there encouraging me and helping me to realise that we would get through it.”

Michael, a service manager at the Sydney operations of a UK telco company, concedes he has found it difficult at times to know how to support Alex.

“Supporting a loved one with this disease can be difficult,” he said. “For me, I’ve struggled to know how to, other than through the practical means of helping day to day. I tend to approach things in a practical way, which is not always helpful when facing something as life changing and emotionally draining as this.”

A strong Christian faith has also been essential for the couple in coming to terms with Alex’s CML journey – a journey they say has significantly altered their outlook on this life, for the better.

“It’s just put things in perspective,” said Alex. “Before I had it (CML) I was a very anxious person. Now I look at the small things and say ‘it’s not important’. It’s also made me realise how important it is to spend time with friends and family – to let them know you’re thinking of them and that you’re there for them.”

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