Patient Story Type: Leukaemia

In 2010, when Stephen Bailey had still not recovered from a minor operation, his doctor was concerned to hear he was still in so much pain.

When Stephen had blood tests, he and his wife Trish were surprised to be called urgently by the after-hours team telling them Stephen had very low immunity.

“That was when I knew something wasn’t right,” says Stephen. After then having a bone marrow biopsy which Stephen says ‘was not a good experience’ and waiting over the weekend for results, Stephen’s haematologist delivered the news that he had acute myeloid leukaemia.

Stephen says that while he was waiting for the results it never entered his mind he might have cancer. He didn’t know what the diagnosis meant but quickly learnt the alternative to immediate treatment was very grim.

Stephen started treatment right away and although many of the expected side effects were explained to him, being a detail orientated person he wanted to know everything and anything that could happen to him.

“As a mechanic by trade I always want all the details. It took me a while to realise that everyone going through treatment will deal with different side effects and challenges. It’s a different journey for us all,” says Stephen.

Stephen was determined to give himself every chance of recovering but as he went through each round of treatment it became harder and harder.

“I wanted to get on with it and to survive for Trish, my kids and my two grandkids. I wanted to fight it but it sure was a hell of a fight!” says Stephen.

After his first round of treatment Stephen was technically in remission and went through three more rounds of chemotherapy and total body irradiation prior to having a stem cell transplant.

After ending up in ICU after the transplant with lung failure and being very close to giving up, Stephen says he found the strength from somewhere and after two weeks in ICU was finally on his long road to recovery.

Staying positive was important for Stephen however he says he knows the positivity all came from Trish.

“When I think about my journey as a survivor I think about the separate journey Trish had to go on as my carer. I can only imagine what it was like for her and I don’t know if I could have had the same strength she did if the roles were reversed,” says Stephen.

Trish says the original diagnosis was a ‘king-hit blow’ where she felt a sense of disassociation from the sudden diagnosis.

However, with such little time to process everything she immediately realised she needed to be Stephen’s advocate.

“I didn’t really have any time to get my head around the new language everyone was speaking and what the journey would look like. This was just suddenly our new ‘now’,” says Trish.

Despite doing a lot of research into side effects and what to expect, Stephen and Trish were still not ready for everything that came their way.

“I was not prepared for the loss of brain function, psychosis and paranoia from the strong treatment Steve was on, but it did add some humour to the daily grind,” says Trish.

Trish says humour was a way for her and Stephen to get through each day and she recalls some occasions where Stephen’s paranoia made for some funny situations.

“One morning Steve told me he had sorted all his medication only to find he had put ten kinds of medication in one big bowl!

Needless to say we had to take a trip to the pharmacy that morning!” says Trish.

The experience of caring for Stephen and being his advocate throughout treatment was at times very lonely for Trish who says although her family and friends were very supportive, realities of their new life took a huge toll on her.

“A year or so after Stephen came home from treatment, I realised I had buried a lot of my own feelings. They were all still there but I just hadn’t dealt with them yet. It was a crazy journey but it made it easier that we were such good mates to start with,” says Trish.

Stephen’s road to recovery was not without setbacks and he sought help for depression while also leaning on his religious beliefs and the support of his priest.

“It was a devastating diagnosis but I know I am a much better person for it. I see the world in a whole new way. I now really try to listen to others and help anyone else going through the same thing,” says Stephen.

“I am so grateful for Trish and the support she gave me and I’m just so excited for the future and what lies ahead for us.”

When Shelley Woodney was celebrating her birthday in early 2015, a sore mouth and gums meant she couldn’t enjoy her food and she headed to bed feeling unwell.

After two days in bed, Shelley ended up in hospital. Two specialists diagnosed her with tonsillitis but after having blood tests, she was told a haematologist was coming to speak to her.

“The haematologist came in and told me I had acute lymphoblastic leukaemia. I started treatment right away and didn’t leave the hospital for the next 10 days,” says Shelley.

Shelley spent 12 weeks having chemotherapy and blood transfusions which she says started out well although she did have to spend time in and out of the hospital.

“The hardest thing for me was knowing when I was too sick and should go to the hospital. I think  there were a few times where I shouldn’t have waited so long,” says Shelley.

Once she finished her treatment, Shelley was given the choice to have a stem cell transplant.

“I cried non-stop for days when I was deciding whether to have the transplant. I just didn’t want to do it but I also knew it was my best chance of survival so I decided to go for it,” says Shelley.

Shelley was meant to have six weeks at home to rest and prepare for her transplant but a bout of pneumonia struck her down after only five days at home. This meant she went into her stem cell transplant not as strong as she would have liked.

Donor cells from Germany arrived for Shelley’s transplant and although it was a little later than planned, her transplant went smoothly.

Just eight days after her transplant, Shelley was so unwell in the Intensive Care Unit (ICU) that the doctor advised her to bring her children in to see her.

“It was the middle of the night and I said we wouldn’t call them until the morning because I just wasn’t going die and that was that!” says Shelley.

Although she knew the odds of coming out of the ICU were slim, Shelley was determined to recover.

Shelley recovered slowly from her stem cell transplant and was given the news that she was in remission. She says it was when she got home and into a new routine that she felt the most alone.

“When you’re sick in hospital you have so many people surrounding you. Then I got home and all of a sudden it was just me again,” says Shelley.

The road to recovery was not easy for Shelley who developed a severe case of graft versus host disease which affected multiple parts of her body and left her skin in a painful rash.

Shelley now takes steroids daily to manage her graft versus host disease and deal with the pain of constant ulcers and blisters in her mouth.

“I know that long term steroid use isn’t great for the body but I would rather a better quality of life day to day,” says Shelley.

The psychological effects of her diagnosis was one of the hardest things for Shelley to deal with but making friends with other patients made a huge difference.

“When I talk to any of them and they ask how I am, I know that they genuinely want to know. They’re the ones who actually understand what I’m going through and I think it’s so important to have those kind of people to talk to,” says Shelley.

As well as sharing her experiences with other patients, Shelley started a blog to keep her family and friends updated on her progress.

Shelley had already started journaling and decided to put her thoughts online after so many people seemed interested in her journey.

“I wanted to show the in-depth side of treatment to hopefully teach others about the process and possibly help someone else prepare who might be going through something similar” says Shelley.

It took Shelley a while to settle back into her work part time but says she just had to ‘find her groove’ and it now feels like she never left.

“People say you need to find a ‘new normal’ when you get back into your old life but I think it’s a whole new me because my life will never really be ‘normal’ again,” says Shelley.

Shelley’s journey hasn’t been an easy one but she says if she was given the chance to take it all back, she wouldn’t if it meant giving up the relationships she has formed and the experience she has gained.

“On my bad days I ask myself if it was worth it but then on my good days I’m so proud of myself for making it through,” says Shelley.

“Before I was diagnosed I was just doing life, now I feel like I am really living life!”

When Carol Clarke was diagnosed with chronic myeloid leukaemia in 2000, she had no idea what her journey would be but she never thought her diagnosis would put her in the media spotlight.

When Carol became unwell at the age of 52, her doctor and a few friends thought it was the start of menopause. She started on hormone replacement therapy but when her symptoms continued, she went back to the doctor.

After two rounds of tests, Carol’s doctor told her he was 99 per cent sure she had leukaemia and a bone marrow biopsy then confirmed it.

I had never had anything majorly wrong with me so it was a big surprise.

As soon as she was diagnosed Carol says things moved quickly and she travelled from her hometown of Rotorua to meet her haematologist in Hamilton. Carol’s haematologist explained that a very exciting clinical trial had just started and that she was possibly eligible to take part.

I didn’t know what all the fuss was about with this particular trial but the excitement of all the haematologists involved made me think I should do it so I said yes straight away.

Carol had to undergo a lot of assessments to ensure she was ft for the trial and was then randomly selected to be one of the first New Zealanders to try the drug Glivec.

Although she had to wait a little longer for treatment to start she wasn’t worried and kept herself busy by continuing to work as much as she could.

Something just told me to wait and do the trial. I guess I didn’t know what I was missing out on so in a way ignorance was bliss!

After six months of taking Glivec, Carol was told she was in remission. It didn’t take long for the media and health community to hear about this new super drug for CML patients and Carol found herself as the ‘face of Glivec’ in New Zealand.

When news of my successful trial hit the Herald I had so many calls from everyone I knew. It felt very overwhelming.

Carol didn’t realise how serious the successful trial really was until her haematologist Peter Browett, who lead the trial in New Zealand explained it was the biggest breakthrough for CML in 25 years.

I think although it wasn’t great I got diagnosed, I was extremely lucky with the timing of it all.

When Carol was diagnosed she was told if her blood cancer was left untreated she would only live for another three to five years. Carol has now been in remission for over fifteen years.

After the success of Carol’s trial and many others, Glivec became a funded CML treatment and is now known as the wonder drug of the 21st century.

Glivec has resulted in dramatic improvements in outcomes and quality of life for CML patients. Patients who are diagnosed with CML can now live long lives living with CML as a chronic illness rather than an unfavourable type of cancer provided they take their regular medicine.

For Carol, taking medication daily has simply become a part of her everyday life.

Even though I have got on with my life, my condition is a huge part of me and it always will be.

Although she has been in remission for many years, Carol is an active member of LBC support groups and says she enjoys sharing her knowledge with other patients.

Carol is often known around her hometown as the go-to woman if anyone needs someone to talk to about a cancer diagnosis.

I’ll never walk away from that part of my life now because it has become a part of who I am.

Thirty-five years ago Blair Wingfield was making a decent living selling life insurance. What he didn’t realise was that he was ineligible for his own policies.

“I was selling stuff I couldn’t buy. I didn’t qualify.”

The 39-year-old had undiagnosed acute myeloid leukaemia (AML) – at the time a serious and uninsurable blood cancer that was causing a rapid deterioration in his health.

“I didn’t feel 100% and I had no energy. I also had a huge bruise on my leg. I kept wondering if I had banged myself on the table.”

Encouraged by his wife, the father of two young boys decided to get a blood test. The next day his doctor called him in to his surgery and told him he had leukaemia.

“I thought ‘oh, not only is that a nasty word, it’s pretty deadly’. I couldn’t believe it. I’d always been as fit as a buck rat and then, all of a sudden, kaput.”

Blair later learnt that his condition had been so bad, his doctor didn’t expect him to live through the night.

Blair needed an immediate injection of white blood cells. Fortunately, a doctor in the cardiac unit next-door had compatible cells.

“They took them off her and injected them between my toes – the only place they could find a good vein.”

“If she hadn’t given me those cells, I wouldn’t have made it through the night. It was that touch and go. I was literally bleeding to death.”

Blair’s next stroke of luck was being treated with amsacrine. At the time the drug was thought to be revolutionary, but compared to modern, targeted treatments for AML, the side-effects were severe.

“It’s rotten, yellow, stinking stuff that saved me.”

Since Blair’s diagnosis thirty five years ago, AML treatment has developed substantially and the side effects have significantly decreased.

“It was like, up against the wall, get a shotgun, blow you apart and then sweep all the bits together and say ‘oh you’re strong enough to have some more chemo now’.“

“They did that for 18 months, in 5 week cycles. Every cycle I’d go home and vomit for 3 days.”

He also lost all his hair, developed multiple blood clots and permanently lost feeling in some of his fingers.

But he survived. His last treatment was in February 1983.

“As far as I know I’m the only one who’s still around. People say you’re cured but I wouldn’t be that presumptuous. That’s just how I handle it.”

“Right from the beginning I knew what I had to do to stay alive – trust the doctor, have faith in myself and family and surround myself with positive people.”

Blair’s incredible survival has earned him the nickname ‘Miracle Man’.

“I can’t run away from it. I met a woman in her 70s recently and she said ‘oh you’re the ‘Miracle Man’. I always get embarrassed when people say that.”

What he’s not embarrassed about is the role he’s played in helping people stay positive in the face of their own blood cancer diagnoses.

“Just the other day I had a guy text me saying my example had helped him survive 15 years with the disease. There’ve been lots of examples like that.”

He’s also proud of his role in helping shape Leukaemia & Blood Cancer New Zealand into the organisation it is today.

“When we started we had a budget of $135,000 and two part-time staff. We’ve now got a work-force of 20 full-time staff, have sponsored a room in the new Motatapu Ward at Auckland City Hospital and have been instrumental in establishing the Leukaemia & Blood Cancer Research Unit at the University of Auckland.”

“It gives me goose bumps when I see what we’ve achieved.”

Blair’s hard work on behalf of LBC was recognised in 2015 when he was appointed as an officer of the New Zealand Order of Merit for his contribution to health and sport.

Now 74, Blair has no plans to hang up his boots. He’s still on the LBC board, still giving motivational talks and is still determined to keep his humour and to live life to the fullest.

“I’m better than I ever imagined I could be. I’ve now got grandchildren who are older than my kids were when I was diagnosed.”

“But I can’t run away from the responsibility. It’s a prick of a disease. And it’s hard to spell.”

When 24-year-old farmer Damian Bardoul went on a pig hunting trip for the weekend, his friends said “there must be something wrong if you can’t carry your pig out of the bush.” Only a few days later he was struggling to run up and down the field at rugby practice.

“I went to the doctors for tests that week. The doctor then called and said I needed to get to Waikato Hospital right away,” says Damian.

The next day Damian was told he had acute lymphoblastic leukaemia.

I had been tired for a while but I just dismissed it as nothing. One of the guys at rugby said I must have low iron so I thought I was fine.

Damian’s parents rushed to the hospital unaware of his diagnosis.

“When my parents came in I just lost it,” says Damian. “My dad just went completely pale.”

Damian’s family and friends struggled to come to terms with the diagnosis as the 22-year-old was fit and healthy. After initial bone marrow tests, everything happened quickly.

“My brother told the doctor I ate porridge for breakfast every day and was the fittest guy he knew so he must have got the wrong patient,” says Damian.

“I was hunting on the Monday and by Thursday morning I was starting chemotherapy, says Damian.”

After a full cycle of chemotherapy, Damian was sent home to rest. His doctor seemed confident the chemotherapy was going to work. A week later Damian headed to the doctors hoping for good news.

My doctor seemed shocked when he read the results. He simply just said, “Damian, the chemo hasn’t worked”.

The results showed 60% of Damian’s cells were still leukaemic and they were meant to be under 3%.

“That was when mum and my girlfriend Lauren really broke down. I tried to keep it together and asked what the next step was.”

Immediately, Damian was tested to determine whether he would receive a very high dose treatment of chemotherapy called Ara-c. He was given the all clear and started the treatment right away.

“Waiting for the results from that round of treatment was really nerve wracking. We didn’t know what would happen if it didn’t work,” says Damian.

My doctor rang me at 8pm the night of my tests and said “I’ve got some bloody good news for you Damian”, and I knew it had worked.

The following months were spent undergoing further rounds of chemotherapy, radiation and a bone marrow transplant in Auckland Hospital. Damian’s older sister was the only match out of seven siblings who could donate cells.

“My sister had just had a baby and giving cells meant she had to stop breast feeding, but she still did it and was just happy that she could help.”

Although Damian’s family and friends were from Waikato, it seemed like there was a never ending stream of people coming to support him even while he was in Auckland City Hospital. Both of Damian’s rugby clubs held nights in honour of him. The entire community came and over 35 of Damian’s family and team mates shaved their heads to show solidarity with him.

“Those nights were just mind blowing, it was so emotional for everyone involved,” says Damian.

“Three of my sisters shaved – one did so from Ireland and my best mate shaved his dreads. It was overwhelming how much support I really had.”

Although he says it could have been easy to be negative, Damian chose to focus on positive things.

“When I was in hospital the amount of people that came to visit was amazing. My rugby coaches, old school teachers, rugby team mates all came in, it was incredible.”

Damian’s girlfriend Lauren was working as a nurse in Waikato Hospital and was there every chance she could.

“Lauren was unreal throughout everything. She would stay in the hospital with me then get up and go to work in that same building. You really knew when she wasn’t there.”

When Damian was well enough the couple took a trip to Australia at the start of 2014 where Damian proposed to Lauren who said yes. At only 24 Damian’s take on life has now completely changed. Although some things are harder to do than before such as tasks on the farm, he never takes anything for granted.

“You just don’t know what is around the next corner.”