- Diagnosed with acute myeloid leukaemia

Caroline's story

In early 2016, Caroline Mountford found herself frequently visiting her doctor for multiple new health issues.

For over seven months her doctors could not work out what was wrong with her. After a multitude of tests they finally diagnosed her with acute myeloid leukaemia.

Caroline was usually in very good health but she started to suffer from severe pain in the bones in her forearms, continual swelling of her glands, problems with her fingers and stomach swelling. When her blood tests continued to come back showing nothing, Caroline would continue on with life  as best she could until problems arose again.

When she was nearly in tears at work with severe arm pain, Caroline ended up in the emergency room and was then finally diagnosed with AML.

“I was admitted to hospital right away and two days later it all started happening and I was having chemotherapy”

Caroline discovered that her blood tests never showed anything unusual because she had a genetic cell that prevented detection of a blood cancer.

“I was also diagnosed with budd-chiari syndrome – a very rare condition which was causing the ongoing stomach swelling due to a liver enlargement,” says Caroline.

With the added complication of the buddchiari syndrome diagnosis and her unique genetic cell makeup, Caroline knew her treatment and recovery might not be the same as others.

“I never wanted to read too much into all the information I was given as I knew it might be different for me. I just told my haematologist to do what was needed to be done,” says Caroline.

Caroline went through three rounds of chemotherapy and spent a month in hospital each time where her partner, Nigel and mother-in-law Maree, kept her company.

“I’m so lucky to have Maree. She came to the hospital every day to see me with a coffee and a muffin and would drive me to and from the hospital and appointments,” says Caroline.

Caroline and Nigel moved to New Zealand from Australia three years before her diagnosis and she says the visits from her parents and sister helped keep her positive and strong.

Caroline’s body reacted well to the chemotherapy and she was lucky to not experience any sickness or harsh side effects. When the time came for Caroline to undergo a stem cell transplant she had to make an advanced care plan which she says was the hardest part of the journey so far.

“With only a 40% chance of survival I knew I had to do the plan but that was the thing that really got to me,” says Caroline.

Despite the many side effects and complications she was told she might encounter after the transplant, Caroline’s body once again responded well and she was at home recovering within three weeks. It was three months after the transplant when she was meant to be getting better where Caroline began to deal with complications.

“I started to feel really sick and tired all the time and I had never felt like that before. I wondered if it was my body rejecting the donor cells from the transplant,” says Caroline.

Caroline’s doctor diagnosed the sudden sickness as a leg condition called polyradiculoneuropathy – an autoimmune neurological impairment. Caroline became so sick very quickly and was admitted to the neurology ward at Christchurch Hospital and suddenly lost all feeling in her legs, leaving her in a wheelchair.

“Going through chemotherapy and the transplant process wasn’t too difficult for me but being bound to a wheelchair and losing all my independence was definitely the lowest part of my journey,” says Caroline.

Caroline spent two months in the wheelchair while working with a physiotherapist to get the movement back in her legs. She then slowly moved to using a walker for another few months then to crutches before being able to walk properly again seven months later.

“I still have a bit of trouble with balance and I don’t have the full capabilities of walking but I don’t need any equipment to help me anymore and I got my independence back,” says Caroline.

When she started thinking about getting back to her job in insurance, Caroline says Ady Drummond, the Leukaemia & Blood Cancer New Zealand Christchurch Support Services Coordinator, was a huge support.

“Ady went with me to meet my boss and discuss what I had been through and helped us make a plan to ease me back into work. She was a fantastic support person,” says Caroline.

Despite facing challenges she never expected, Caroline says the journey has simply been another life experience and she has always believed that everything happens for a reason.

“I’ve always been quite a spiritual person and I sent a lot of positive thoughts out to the universe but I also made sure I had a cry when I needed,” says Caroline.

“Whatever comes along I know I will get through it. I can’t say when, but I know I will!”