Neil

Neil Brownlie has recently finished treatment for acute myeloid leukaemia (AML); but he has faced more hurdles at age 37 than most people encounter in a lifetime.

The first occurred ten years ago when he was diagnosed with Hodgkin’s lymphoma.

“I did some treatment, but I wasn’t staying in hospital or anything like that. I went every couple of weeks to get some chemo and radiation.”

Only five years later, cancer reared its ugly head once again.

“I got Burkitt’s lymphoma, an aggressive form of non-Hodgkin’s lymphoma, and I had to stay in hospital to treat that. I was only getting chemo at that time, but I was in hospital for around six months. It was a pretty long stay.”

After surviving two different cancers, Neil was facing issues with his employment.

“Before I got sick, I was working for myself. But now I’m not quite up to the physical rigours of what I had been doing.”

When speaking about LBC, Neil says that this was an area where he could lean on Deb, the Support Services Coordinator in Dunedin, and her team for advice and support.

“With just my partner working, it was difficult, especially when I was the higher income earner. The financial support LBC gave to my family, like food and fuel vouchers, really helped.”

In January of 2020 – Neil was back in Dunedin Hospital undergoing even more chemotherapy. This time, the diagnosis was different. Although he’d already overcome two forms of lymphoma, he was now being treated for AML.

“I went in and had treatment for about four months, and then I had to go and get a stem-cell transplant. For the stemcell transplant, I went up to Christchurch Hospital and stayed up there for just shy of four months as well.”

While receiving treatment for AML, Neil encountered a unique problem. Throughout his three rounds of cancer, he had already had the maximum amount of a number of chemotherapy drugs that one person is allowed to receive in their lifetime. Yes, this is something that can happen in New Zealand.

“They kind of just gave me what chemo they could but kept dropping them as I had reached their limit.”

On top of all that, Neil’s most recent treatment was happening during 2020 – the year COVID-19 spread around the globe.

“When the country went into lockdown for six weeks, I wasn’t allowed to leave my hospital room or have visitors, which included my wife and kids. Before that, I would walk around the hospital ward and go for a wander outside occasionally, but I wasn’t allowed to leave my room for those six weeks. So, that was an extra challenge.”

It was while the nation was facing the global pandemic that Neil underwent his stem-cell transplant.

“They got rid of the cancer before I even went to Christchurch for the transplant. The problem was, because they couldn’t give me all of the chemo drugs; there was no way it was going to stay away.”

Amazingly though, he has come out on the other side and is now only on the necessary post-transplant medication.

“I have had no sign of cancer coming back.”

Neil’s story is one of hope and focussing on the positive, but also thinking outside the box. During all of this journey, Neil had to re-evaluate what his next move could be workwise, as he could not work as a qualified electrician due to the physical nature of the job. This didn’t stop Neil. What he did was head back to school to upskill his knowledge and qualify to do something new.

“Id looked into studying, not sure what I was going to do. I didn’t want to throw all of my electrical experience out the door. However, it just so happened that since there is such a shortage of electrical engineers in the country, the Government made it so that the course is free for the next two years. It saved me about 10,000 dollars a year in fees. So basically, when I saw that, I was like, this is my opportunity.”

Armed with a new lease on life, Neil says there is another major factor in tackling challenges as they arise.

“I believe that attitude has a large chunk to do with success. The worst-case scenario is always there, but if you dwell on it, it creates a lot of anxiety, whereas if you let things play out, it usually ends up not being as bad as you thought it was. You’ve got to try to stay positive.”

Keil

Today, Keil Guthrie is a happy and ambitious 11-year-old boy, who has dreams of becoming a pilot. When looking at his bright smile, you would never guess that he has already faced the challenge of a lifetime – a diagnosis of acute lymphoblastic leukaemia (ALL).

His father, Kriston, says that the story of his son’s cancer journey started with a football trip that his brother was on in July 2019, during which Keil’s neck began to swell.

“Quite a few people had the flu on this trip, and we thought he might have a bit of the flu or something similar.”

 Kriston said that when his son’s neck started to swell on the other side, they decided they needed to go back to the doctor. The doctor ran tests to try and determine what
was going on with Keil. As the family waited for his results, Kriston remembers Keil had back-to-back rugby games one weekend that left him exhausted.

“We took him back into the doctors, and they sent us up to the hospital for tests, and then we went home. They then told us to come back in – I think it was a Thursday. There was a paediatrician over from Christchurch, and she took one look at him, and she goes, ‘I’m sorry to say, but there’s a 99% chance that he could have leukaemia.’”

The Guthrie family was understandably devastated at this news. Even though Keil was only ten years old at the time of his diagnosis, the gravity of the situation was not lost on him. Kriston says that his son’s reaction to the news was gut-wrenching.

“Keil was sitting there listening, and he goes ‘Dad, I don’t want to die.’”

As hard as those words must have been to hear, the Guthries bound together and fought against the situation in the same way – as a family. While their son was undergoing treatment at Christchurch Hospital, Kriston and his wife, Melia, had to balance work and supporting their other two children, Payton and Keton. Keil’s two siblings lived in Greymouth with their grandparents during this challenging time, as Melia spent ten months with Keil, in hospital.

The hospital said “after those ten months, because he had gone through most of the cycles, that we could go home for brief periods. So, he was coming home for, say, five days, and then he would spend two weeks over there, at the hospital. He got onto the maintenance programme after twelve months.”

When asked about LBC, Kriston said that Christchurch-based Support Services Coordinator, Matt Eby was in touch right after Keil’s diagnosis and provided invaluable
assistance.

“He offered us the support we wanted, and he would always check up on us and invite us around to have a yarn and that. He did a wonderful job. I don’t know if you realise it makes such a big difference, just having different people to talk to. Especially when they have a good understanding of what you are going through.”

Peter

In 2018 Peter was working as the curator at Black’s Point Museum in Reefton and looking forward to retirement. He hadn’t been to his GP for a while so decided to go for a routine check-up and blood test.

The GP noticed a  problem with Peter’s blood and referred the results to a haematologist in Christchurch. He got a report back and called Peter in to talk about it, as Peter explains: “The GP told me I had chronic lymphocytic leukaemia (CLL) – it was a shock. He explained it might be years before I would need treatment, I remember feeling annoyed at the time because I wanted it to be fixed but put it to the back of my mind and carried on with life.”

Peter had regular blood tests to keep track of the progress of his CLL. At the beginning of last year, just 12 months after his initial diagnosis, his blood markers started to increase: “The haematologist told me that things were
progressing more quickly than expected and I would need to start chemotherapy right away.”

Peter had six months of chemotherapy – traveling to Greymouth regularly from his home on the family farm: “I started chemo in May and finished in October – the first few rounds were OK but it got harder as it went along. When I came out of the last chemo I felt like an old man –but I got through it and I’m starting to get my strength back now.”

When Peter was in Greymouth for his treatment he met up with LBC’s Matt Eby as he explains: “It was great meeting Matt, I could sit comfortably with a cuppa and talk to him about anything – it was a nice little sanctuary to go to!”

Matt let Peter know about support that was available but one of the best pieces of advice he received was from a friend who suggested he write down some of the things that had happened in his life: “I am a typical Kiwi bloke and didn’t always deal with my emotions well, but I found if I wrote things down it helped me come to terms with things.”

Peter continues to have three monthly blood tests and so far everything is heading in the right direction, as he explains: “I do realise I have leukaemia and it will come back one day but I have accepted
it, I could go another 20 years so there is no point worrying about it. I have goals and enjoy the important things in life like friendships and family and working on my land.”

David

When David started to experience chest pains, blood cancer was the last thing on his mind.

David’s GP was able to reassure him that his pain wasn’t heart-related and did some blood tests which showed that David’s neutrophils were low – he recommended a re-test in a month’s time. David’s neutrophils were still low and the GP again recommended a re-check which showed a similar result. Eventually, David was referred to a specialist. Once David saw the specialist he was given the news that he had acute myeloid leukaemia (AML). As he explains: “When I got the initial blood results I had done some research online and thought I had chronic leukaemia – so  when the specialist told me it was AML it wasn’t a total surprise. My wife Elaine was with me and it hit her harder than me. I asked the doctor how long I would have if I decided not to have treatment and he said “about three months” – that really shocked the family.”

David and Elaine weighed up the pros and cons of treatment and decided it was a better option to proceed, he explains: “We looked at the percentage success rate and it was clearly a better option for me to go with treatment.  The specialist said that the first two years after treatment were touch and go as lots of things could go wrong but if I got past that the chances of a longer life extended all the time.”

David’s treatment began a few days later in Wellington Hospital with his first round of chemotherapy. He spent most of the next three months in hospital with just a few days’ break between each round of treatment. As he explains: “I’d never been in hospital before so I didn’t know what to expect but I tried to keep a normal routine – I got up and dressed so I wasn’t in my pyjamas all day and got some exercise by walking up the stairs a few times each day.”

It wasn’t all plain sailing as David experienced adverse reactions to drugs, infection and, just after his first round of chemo, his wife Elaine became unwell with a brain lesion that doctors initially thought might be cancer: “Elaine was on Level 7 of the  hospital and I was on Level 5 – thankfully Elaine is on the road to recovery now – but it was a really difficult time for the family.”

David has a strong, positive spirituality which helped him during his cancer, he explains: “My faith is important to me and the idea of my own death wasn’t so frightening because for me, death is not the end of life but more the end of a chapter, and a new chapter begins.”

David needed a stem cell transplant – thankfully his brother in the UK was a match and travelled over to New Zealand to be his donor. Things progressed well, and David’s transplant was a success – his cancer was put into remission. David has just started his third year in remission and reflects on his cancer journey: “It’s amazing to consider what has happened to my body and how the  doctors have carefully navigated my cancer with all its possible pitfalls. I’m very grateful to be in my third year of remission with the possibility of more as my body continues to gradually regain strength. The things that were  key in my journey were having a strong positive spirituality and the joy of having family close. Also the ability to eat good food, especially curries from the local restaurants near the hospital!…..and the thought of another family Christmas, this next one will be my third.”

Tae

In 2015, Whakataerangi (Tae) Mason thought she was a little run down, but the cows on her dairy farm knew something was very wrong with her.

Born and raised in Rotorua, Tae had spent the last 17 years working as a dairy farmer with her husband. No stranger to hard physical work, Tae didn’t let a severe toothache and fatigue slow her down. She had got antibiotics from the dentist, but refused to see a doctor even though her toothache persisted and her husband was insistent.

Then one morning in the milking shed, she found herself without the strength to walk. Her husband took her to their doctor and, at his recommendation, onto Taupo Hospital Emergency Department.

When the emergency doctor saw the dark bruises all over her body, he asked her husband to leave the room before asking her what happened.

“I explained to him that over the past two to three weeks, the pregnant cows were kicking me every opportunity they got,” says Tae.

“After examining me, he said, ‘Tae, I believe you’. He ordered a full set of tests and asked my husband to come back; telling him, ‘you either have very evil or very intuitive cows.’”

By the evening of the same day, Tae was in Waikato Hospital receiving her first round of chemotherapy for acute myeloid leukaemia (AML).

Three rounds of chemotherapy in as many months slowed down the AML, but only a stem cell transplant could offer a cure. Referred to a consultant at Auckland Hospital, Tae needed to find a suitable donor. Her youngest brother was the closest match, but not perfect and there was a chance of complications. As a family, they decided it was worth the risk.

On Waitangi Weekend, Tae was admitted to Auckland Hospital and woke the next morning with a serious infection. To everyone’s surprise, investigations revealed that Tae had been born with only one kidney.

This placed her transplant in jeopardy because of the strain it would place on her sole kidney. Her consultant in Auckland wanted to know more about Tae to help make the decision. It was her husband that offered his insights on Tae.

“My husband told her that I had been a dairy farmer for many years and never had a work day off. He said, ‘every year she calves a thousand cows, and picks up 500 calves during calving season, feeds and raises 500 calves every year, and she’s built like a brick house’.

“At that point the consultant looked at us both, smiled and said, ‘OK you two, we’re going to do this. Tae, you be ready for a rough ride.’”

Three months after her transplant in February 2016, Tae was up and running around, but then the complications hit.

“I caught every bug known to man. I was being given blood transfusions every week. I was a day stay patient every second day, using between one and two units of whole blood weekly.”

Two and a half years have passed and Tae now goes to see her specialist once a month.

“That will change to once every three months, then to six months and then once a year for reviews,” says Tae.

“I have no sign of AML. I have weaned off most of my medication, and I’m not far away from starting my immunisation programme, mumps, measles, rubella, and so on. Just like a baby.”

Her husband as her primary caregiver was in her corner all the way, says Tae.

“If you don’t have a caregiver who understands what is going on with you, you can become your own worst enemy. It’s important your caregiver perseveres and acts on your behalf when you can’t,” says Tae.

Tae is grateful for the support and information that LBC gave to her and her husband, helping with transport, food vouchers, information and counselling.

Their LBC support services coordinator is now regarded as one of the family.

“Matt was excellent in giving my husband the tools to explain to friends and family about my condition. He taught him all the one liners, such as ‘it’s like when production breaks down in a factory.’ Before you knew it, everyone was an AML doctor,” says Tae with a laugh.

“Matt was also someone to talk to, and he introduced us to people who had gone or were going on a similar journey to us. In short, his support has meant that I have met lots of people who have turned into dear friends.”

Moving forward, Tae wants only to be healthy, happy and give back wherever she can.

 

 

Fiona

True to her ‘Type A’ personality, when Fiona Beck was diagnosed with an aggressive form of leukaemia, she chose to deal with it as another job to do.

Growing up in different towns in the South Island before moving to Rotorua and going to university in Hamilton, Fiona is used to a life on the go. Her career has taken her even further afield. For the past 17 years, Fiona has regularly commuted between Bermuda and New Zealand.

It was early 2016 when Fiona got an itchy rash on her legs. Arriving home in Wellington from Bermuda, she visited her local GP for a cream to soothe the irritation. She ordered routine blood tests as part of a general health check. Two days later, Fiona was in hospital.

Fiona clearly recalls her consultant telling her that he was going to give her the best kind of worse news.

“He said I had leukaemia, but one that now has one of the highest ‘cure’ rates. One that previously was always fatal.”

Her treatment for acute promyelocytic leukaemia (APL) started immediately with a relatively new treatment protocol based on ATRA and daily intravenous rounds of Arsenic Trioxide.

“I handled the treatments well, overall. I had to contend with migraine headaches and then started to develop an irregular heart rhythm. And unbelievably dry skin – I was like a crocodile,” says Fiona.

Her partner of 33 years Dean helped break the news of her illness to family, friends and colleagues. By doing so, he allowed Fiona to focus on herself.

“Friends and family all care and want information. But it is hard for the patient to be the communicator-in-chief when you are trying to get through things in the early stages.”

Despite being 15,000 km away from Bermuda, Fiona continued her work for the America’s Cup. Being up at Wellington hospital for around six hours every day, she made good use of the Wi-Fi in the day clinic while receiving her treatment.

“I had a great team over there working with me, and I could remotely work, using video calls, emails and follow up in person when I went back to Bermuda, which I did in one of my three week breaks.

“The America’s Cup gave me something to focus on, a great goal and made me feel normal and connected,” she says.

After her treatment ended, Fiona returned to Bermuda to work closely on the 2017 America’s Cup event. The New Zealand America’s Cup team win was a personal highlight for her. She rates it as highly as the day she finished her treatment.

Fiona is grateful for the support she received from LBC’s Wellington Support Services Coordinator Sally Black.

“From providing information in the early stages to the support groups and sessions, like the Blood Cancer Patient Forum, it’s all been so helpful. Sharing your thoughts in meetings helps you cope and look out for one another.”

One of the most important lessons for Fiona was the knowledge that she was not alone.

“Cancer doesn’t care about age, status or wealth. It is the ultimate equaliser. But with great support and the right medical treatment people survive and go back to living their life, albeit changed by their experience.

“I am not really sure I understood what it meant to live each day until I had to face up to a life-threatening illness.”

In September 2017, Fiona took on the Great Wall of China Challenge adventure and raised funds for LBC.

“It ticked all the boxes – the Chinese were the first to use one of the drugs I’d had to treat APL, I needed a fitness goal for 2017, and it was for the best cause – my favourite charity LBC.

“It was fun, hard work, great friendships were created, and lots of money was raised.”

Devyn

In 2015, two-year-old Devyn Tregurtha was a happy and healthy child so when she had an extremely high temperature for two weeks straight, her mum Bianca stared to worry.

Devyn went in and out of the emergency room and the doctors thought she possibly had a hip infection so she was admitted to hospital for a hip wash and then a bone marrow biopsy.

“The next day we got the results and a haematologist came in to talk to us. He told us Devyn’s hip was fine and she actually had acute lymphoblastic leukaemia”

Bianca works in the medical industry and says that she had heard a few things that made her think Devyn possibly had cancer but she didn’t voice her concerns to anyone.

“I remember the day she was diagnosed so clearly. I felt like I was dreaming,” says Bianca.

From the day of her diagnosis, Devyn spent a month in the hospital receiving treatment with Bianca by her side. Devyn picked up rotavirus when she first was admitted in the emergency room so she had to be isolated to her room the entire month.

Although she was only two at the time, Devyn had already started talking and Bianca says she was worried how Devyn would react to everything in the hospital and her treatments.

“She never complained once. She just went with everything and it really did make it so much easier on the family knowing she was ok with the new situation,” says Bianca.

When Devyn was able to go home after being in isolation she was technically in remission but the family knew she had a long road ahead of her with maintenance chemotherapy for another few years.

Bianca says they were lucky with the amount of overnight hospital stays they had to go through after the month in isolation and being at home with the rest of the family made a big difference.

Devyn’s older sister Luca was only five-years-old when Devyn was diagnosed and the change in family life and her routine was tough at first.

“When Devyn was in hospital for that first month, either my husband Ryan or I were with her which meant Luca never had us all together at home for a long time,” says Bianca.

Devyn’s diagnosis was a lot for Luca to understand and she became anxious that she would also get leukaemia like her sister. Bianca and Ryan did their best to explain to Luca that she couldn’t catch what her sister had and it was ok to be around her.

Bianca heard about Leukaemia & Blood Cancer New Zealand’s Kid’s Club for siblings and children of someone diagnosed with a blood cancer and says Luca went to her first group this year.

“Luca came home with an LBC diary to write or draw in. I was really surprised when I saw she had written a lot of questions to take to the group next time and they were things that I knew LBC could answer better than we could like ‘Why did Devyn get leukaemia?”

Both Ryan and Bianca had to take time off work when Devyn was diagnosed and although she tried to work one day a week, Bianca ended up leaving her job in order to be with Devyn daily through treatment.

“Ryan had to keep things rolling for the family as we still needed an income but his work were amazing and even threw fundraisers for us,” says Bianca

Two years later in mid-2017, Devyn has just finished her treatment and Bianca has been able to head back to work full time.

“I went back to work part time at first and at the same time Devyn started attending pre-school which she loves and I love being back at work so it’s been a great transition for us both!” says Bianca.

When she started at pre-school, Tim, the LBC Support Services Coordinator in Auckland, went and visited her class to explain why Devyn sometimes might not be there and what she had been through the past few years. Devyn also got given a ‘Monkey in my Chair’ to sit in her chair when she isn’t there.

Although Bianca says Devyn went through treatment ‘like a champ’, Devyn was very happy to hear she didn’t have to take medication daily anymore.

After an unexpected two years of supporting Devyn through her treatment, Bianca says she and Ryan now worry about normal things like any other young family which is a nice change.

“Now we instead of worrying about horrible things like cancer and treatment we worry about who will do the school pickups!” says Bianca.

“We just took it one day at a time and rolled with whatever came our way.”

Caroline

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!”

Stephen

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.”

Shelley

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!”