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.”