News Type: Patient stories

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.”

In 2007, Paul Left visited his GP about a small lump under his chin. Paul didn’t see or feel any other signs that he was unwell, so when a needle biopsy came back showing large diffuse B cell lymphoma, he was shocked.

“After a CT scan and bone marrow biopsy, I was diagnosed with stage four lymphoma. It was aggressive and widespread, and I needed treatment. From there, everything happened fairly quickly,” says Paul.

Paul went through six courses of a chemotherapy treatment called R-CHOP which went well, although there were delays because his white cell count was too low at times. He spent a few days in hospital with an infection during the treatment. A follow-up CT scan showed a good response to the chemotherapy, and he was optimistic.

Three years later, Paul’s doctor found another lump in his chest cavity. After a series of biopsies and a chest operation, he was diagnosed with indolent follicular lymphoma.
“The bad news this time around was that I was told indolent lymphoma is a chronic disease. It was slow growing, but incurable,” says Paul.

After a month-long series of daily radiotherapy sessions, a CT scan showed the tumour had responded well. Paul went back to regular check-ups with his doctor to monitor his condition.

Five years later in 2015, Paul’s doctor ordered follow-up scans and biopsies, which showed the tumour had grown again, and the lymphoma had spread to his lymph nodes.

“I went back into treatment, and this time I underwent six courses of a different chemotherapy treatment called R-CVP,” says Paul.

Towards the end of treatment, Paul’s medical team recommended he then have an autologous stem cell transplant.

“To be honest, it was a very hard decision. I was told the transplant wouldn’t cure the lymphoma, but could give me a greater time in remission. I also knew there were risks involved, and I felt physically exhausted after six months of chemotherapy.”

A friend put him in touch with someone who had gone through a stem cell transplant, which helped him weigh up all his options.

“She was fantastic because she didn’t gloss over the bad bits and was positive, but realistic about what to expect. This was very helpful!”

Deciding to go through with the process, he spent three weeks in Auckland City Hospital in April 2016 having the transplant.

“I thought I’d managed my previous treatments quite well, but I found the transplant really gruelling. I was impatient to feel well again, and I felt like the recovery progress was frustratingly slow,” says Paul.

“Exercise was difficult at first, but gradually my strength and fitness returned.”

“My partner Caroline took five weeks off work to care for me while I was in hospital and afterwards. It was a difficult time for both of us, but she was very supportive through it all,” says Paul. “And the staff at the Haematology Unit were very professional throughout the process.

“I’m also really grateful to LBC – I’ve found their visiting speakers really interesting, and Support Services Coordinator Tim has been a great support at times when I needed to make treatment decisions.”

Eighteen months on, Paul is able to see the huge amount of progress he has made and is happy to be feeling well again.

“I’m enjoying time with my friends and family, and I’m even able to run around after my two grandsons when they come to stay. My work has now taken a back seat, and I’m more interested in pursuing my interests: playing guitar and bass in several musical groups, bush walks and reading.

“I’m looking forward to more travel too now that I’m feeling up to it. I’m very grateful to have this extra time at this stage of my life!”

In 2009, Sonja White found herself dealing with enlarged lymph nodes all over her body. For 18 months, she went back and forth to her doctor who thought her lymph nodes were enlarged due to the constant infections she seemed to be having.

While seeing another doctor for an unrelated issue, Sonja pushed to find out more information about the lumps continually popping up.

After visiting a specialist and undergoing a bone marrow biopsy, Sonja was finally diagnosed with Non Hodgkin follicular lymphoma.

“Looking back, I realised I had been losing energy and the lumps were starting to get uncomfortable, but other than that I wouldn’t have known anything was wrong,” says Sonja.

Sonja was told she did not need treatment straight away, so she was placed on active monitoring. She underwent tests every three months.

“I didn’t actually tell anyone when I got the first diagnosis because there really didn’t seem any point when I wasn’t in treatment yet, and I was still working as normal,” says Sonja.

After monitoring her condition for 18 months, Sonja started treatment at Palmerston North Hospital. Every few weeks Sonja had treatment and says it was a sobering experience seeing others at different stages and watching the lovely nurses running around looking after everyone.

Sonja took leave from her job as a teacher to have her treatment and would sit in bed doing school reports and files trying to keep up with everything, but eventually she knew she couldn’t manage it.

“I didn’t want to leave work, but I just ended up with no energy so my lovely class had a relief teacher for the last two school terms of the year,” says Sonja.

Treatment went well and Sonja was eventually in remission, but she knew there was a chance she could relapse. Twenty months down the track, Sonja became unwell again. She was told her cancer was back, and tumours were growing in her abdomen. After nine weeks of one treatment, Sonja’s body didn’t respond well so she was given a different treatment.

After the second treatment, Sonja underwent a stem cell transplant which she says was a fascinating process, although it was not a great experience to go through.

“A friend of mine had a stem cell transplant so I had some knowledge going in to it which helped, but I still think the treatment is worse than the disease itself.” says Sonja.

“I lost 14 kilograms, all my hair and was a pale imitation of myself,” says Sonja.

Initially the stem cells refused to take hold and grow but after four months, and just in time for her daughter’s wedding, things progressed and Sonja felt herself getting stronger with the support of her husband David and her family and friends.

“David is a stoic, practical man and he ran around and did everything while I was recovering, while he was working full time,” says Sonja.

“I think it must be very hard for partners who go through this journey. I’m sure he was worried, but being practical was his way of handling things,” says Sonja.

After attending general cancer support groups, Sonja found it hard to find others who were also diagnosed with a blood cancer until she got in touch with Leukaemia & Blood Cancer New Zealand (LBC).

“When I attended my first LBC support group in Palmerston North, I walked in and the whole room was just buzzing! Then I was so pleased to find two other woman with the same blood cancer as me, and it was so great to know I could talk to them.”

Sonja decided not to go back to work full time and instead she spends her time volunteering at a local school, tutoring at a local adult literacy programme and cuddling her new granddaughter.

Throughout her treatment and recovery, Sonja met many different people on their own journeys and says there were others without family or transport or support like hers.

“I can’t complain because there are so many others going through tough life situations too,” says Sonja.

“Life still goes on no matter what you are dealing with, and you just have to go with the flow.”

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

Devyn was admitted to hospital where after receiving a bone marrow biopsy, it was discovered she had acute lymphoblastic leukaemia (ALL).

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

Devyn has recently completed her treatment for ALL. Her diagnosis has had a huge impact on the entire family over the last two years. Bianca needed to leave her job in order to care for Devyn, and her 5-year-old sister Luca became anxious that she would contract leukaemia like her sister.

The family were supported by Leukaemia & Blood Cancer New Zealand who were there to offer support and practical assistance. Luca attended LBC’s support group for siblings or children of blood cancer patients to meet other youngsters who were experiencing similar issues.

Like the Tregurtha’s, 6 New Zealanders receive the news every day that they have a blood cancer.

To help raise awareness of these diseases – leukaemia, lymphoma and myeloma, Leukaemia & Blood Cancer New Zealand are running a campaign over Blood Cancer Awareness Week (6 – 12 November) called ‘Hiding in Plain Sight’.

The digital campaign features the ‘Blood Cancer Creatures’ who represent the signs and symptoms of blood cancer – swollen lymph nodes, persistent infections, easy bruising and constant fatigue.

It encourages as many Kiwis as possible to learn and recognise the symptoms of blood cancers, as in some cases early detection can lead to more effective treatment of these diseases.

This year, LBC have enlisted the help of well-known Kiwis and social influencers including Breakfast host Hilary Barry and Auckland MP Nikki Kaye to help. They will be posting photos throughout the week featuring cameo appearances by the creatures.

LBC are also encouraging people to share the message with their friends by:

• Using the official campaign hashtag #bcawnz on social media during Blood Cancer Awareness Week 6-12 November 2017
• Sharing the link to the campaign website www.bloodcancercreatures.co.nz
• Downloading the information poster from our website for their workplace, school or organisation

Since beating lymphoma first at the age of 19, Wellington man Phil Kerslake has been diagnosed with both Hodgkin lymphoma and non-Hodgkin lymphoma seven times.

Having lived with cancer for nearly forty years, if anyone knows how to cope with a cancer diagnosis, it’s Phil. Phil is said to be the most prolific cancer survivor in New Zealand after overcoming a staggering eight cancer diagnoses in the past 38 years. He most recently fought a battle and had extensive treatment for lymphoma and skin cancer in 2016.

Phil’s first cancer diagnosis came in 1979 when he was diagnosed with non-Hodgkin lymphoma and was given 10 years to live.

“It’s so important to have a determined and resilient attitude. I could have given up so many times throughout the years but I take on each challenge with an optimistic attitude knowing I will not let it beat me,” he says.

Phil’s positive attitude and incredible story have motivated him to inspire others living with cancer and he is the author of “Life, happiness & cancer” – the leading support book for those affected by cancer.

Phil is also putting his foot forward to raise awareness of lymphoma, the sixth most common cancer in New Zealand, in conjunction with Leukaemia & Blood Cancer New Zealand (LBC) for World Lymphoma Awareness Day (WLAD) this Friday on September 15.

Phil will feature in an international campaign called ‘The Small Things Make the Biggest Difference’ being led by the Lymphoma Coalition, a network comprised of 70 blood cancer organisations across the word, of which LBC is an active member.

Phil and other New Zealand patients will be sharing what the little thing is that made the biggest difference to them via a social media campaign.

When facing each cancer diagnosis, Phil says the small thing for him was communicating with his medical team that made all the difference.

“You’ve got to communicate openly and equally with your doctors so you can get absolutely everything out of your treatment and do all you can to fight it,” says Phil.

Pru Etcheverry, CEO of Leukaemia & Blood Cancer New Zealand and also Chair of the Lymphoma Coalition stresses the need for New Zealanders to become more aware of diseases like lymphoma.

“So many people notice small changes in their health but put it down to being busy, over tired or run down when many of these symptoms can be early signs of lymphoma.”

“Lymphoma can be difficult to both diagnose and understand so it’s important that New Zealanders know as much about the disease as possible and how it can affect you.”

“We urge New Zealanders to pay attention to the small things which really can make a huge difference to their health,” says Ms Etcheverry.

#EverythingChanges when we pay attention to the small things.

Paula Park had just returned to work part-time when everyone in her family came down with the flu. When three-year-old Charlotte took a while to recover, Paula and her husband Tristan knew something wasn’t right.

“We all got better and Charlotte was still struggling,” says Paula. “She was so tired and was having trouble speaking and walking properly.”

Tristan took Charlotte to their GP who sent her straight to the hospital. Within an hour they were told that Charlotte had acute lymphoblastic leukaemia.

“When we got told Charlotte’s diagnosis I immediately just said ‘no she doesn’t’, I was in total denial for the next hour or so until it sunk in.”

It all became real when the family went to the Child Cancer Unit in Christchurch Hospital.

“I stopped at the doors and didn’t want to walk in. The nurse told me once you walk through those doors it will all start getting better,” says Paula.

Charlotte started chemotherapy within a week and the family were at the hospital for about six weeks before returning home.

“Once we got home that’s when it became scary because I was the one caring for her. I basically became a full time nurse,” says Paula.

Paula learnt how to manage all of Charlotte’s medications as well as managing the side effects that came with them.

“I had to know when to give her certain medications at certain times to stop side effects like nausea. I also had to learn how to use syringes to administer other medicines,” says Paula.

Paula and Charlotte were in and out of hospital for six months while Charlotte underwent chemotherapy. Paula found it hard trying to comfort Charlotte.

“It was hard for me to tell her things were going to be ok when I didn’t even know myself,” says Paula.

Paula said it was also difficult managing a three-year-old undergoing intensive treatment.

“With a child as young as Charlotte you really do need to be there the whole time. They can forget they have I.V. lines in their arms when they want to jump around when they have the energy,” says Paula.

The Park family have grown closer since Charlotte’s diagnosis with everyone taking on a caring role.

“Charlotte’s sister Grace is only a year older than her and they have a really close bond. Grace tends to Charlotte when she isn’t well and likes to be her nurse,” says Paula.

Although they have been brought closer together Paula says devoting her time to caring for one daughter has sometimes affected her other daughter.

“It was hard for Grace to understand why I was always away with Charlotte as she needed her mum too,” says Paula.

“However when I wasn’t there it meant she got to have a lot of ‘daddy-daughter’ time.”

Charlotte started school in 2015 which Paula says has made her feel like any other normal five-year-old.

“Charlotte hates missing school and always tries to attend daily. She even tries to go the day after she has had chemotherapy although she often only makes it through half the day,” says Paula.

Since starting school Charlotte has had a ‘Monkey in My Chair’ provided by Leukaemia & Blood Cancer which helps her classmates communicate with her when she is not at school. Charlotte takes her smaller monkey with her everywhere she goes.

The Monkey in My Chair programme is designed to keep young leukaemia and blood cancer patients connected to their classmates while they undergo treatment. As a mother with an unwell child, Paula says that the best advice she can pass on to other mums is to take all the support you are offered and to help others in a similar position.

“Don’t be shy around other families and parents on the ward because you are all in the same boat and those are the people who can relate to what you are going through.”

When Gary Fredericksen went to a respiratory specialist with a chest complaint, he didn’t think it was a big deal. However he became concerned when the specialist found lumps on his body and referred him for a biopsy. After a nervous long wait, Gary was told he had stage four lymphoma.

Gary tried to keep things to himself to start with, but his wife Maree knew something wasn’t right. After a lot of questioning, Gary handed her the letter with the results on it.

“When I read that letter I just fell to bits,” says Maree.

Gary and Maree had never heard of lymphoma and didn’t understand what the diagnosis meant. In the busy period right before Christmas they were able to see a doctor and have some questions answered.

“The doctor said “well this won’t be the thing that kills you”, which was actually really nice to hear at that time,” says Gary.

Maree knew a client through her work who had leukaemia who she went straight to for advice.

“The first thing she told me was to not look at anything on the internet and to go and speak to Leukaemia & Blood Cancer New Zealand (LBC),” says Maree.

Gary didn’t take the news of his diagnosis well and did not want to acknowledge it or speak about it. He now admits that he was in complete denial.

“was a fitness freak my whole life and to be honest I thought that I was bulletproof.”

“I didn’t want to talk to anyone about my diagnosis. I just wanted to get on with my life.”

Gary was told his lymphoma was chronic which meant it did not presently require treatment. He instead has been put on active monitoring until his condition becomes acute.

Maree contacted LBC as Gary was not comfortable doing so at that time.

“I went to LBC and met Rebecca who really reassured me things were going to be ok.”

“She gave me so many books to read and take home to Gary and it helped to know we had someone to talk to,” says Maree.

Gary says that while he tried to live in denial he lost a lot of his self-esteem. Eventually he decided to go with Maree to talk to LBC and everything turned around.

When I met Rebecca it was like a light switched on. She was so bright and positive and she really made all the difference to my head space, says Gary.

Soon after, the Fredericksen’s attended a mindfulness course which helped Gary to adopt a more positive attitude.

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,” says Damian. 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.”

25-year-old Mellisa Chesterman from Tokoroa was mid-way through her post-graduate diploma in teaching at Waikato University when she noticed she was having difficulty walking up stairs and felt an ever increasing pressure in her chest.

“My family thought I was run down from studying, while GPs thought I had some type of viral infection or glandular fever. It felt like there was an elephant sitting on my chest and I still couldn’t shake it after three months,” she says.

Mellisa saw a different doctor who had a feeling that things weren’t right and was concerned that she had been sick for such a long period of time.

Eventually she was admitted to hospital where her haematologist confirmed she had stage-four non-Hodgkin mediastinal large B-cell lymphoma.

“I didn’t know anything about my condition except that it was cancer. I immediately thought back to all the movies I had seen about cancer,” says Mellisa.

“When the doctor told me the diagnosis all I could think about was how devastated my family were going to be,” says Mellisa.

“There’s just my parents and my brother and I and we are all very close. That was the first time I remember being scared because I was scared for them.”

It was Mellisa’s then 16-year-old brother that inspired her.

“My brother Cody is my best friend and is a real typical Kiwi bloke who never cries. On the day of my diagnosis he broke down in tears. It was that moment that I knew I would fight this disease to be here for him.”

Mellisa was in Waikato hospital for the next few months undergoing six rounds of chemo. Although she says the staff were wonderful, it was still a tough time for everyone. Her first night in the ward was the hardest and she says that was when everything became real.

Mellisa describes her family as being “absolutely incredible” throughout her journey. Her grandma, who they call nanny, even sold her house and moved cities to be a support for Mellisa, while her mum was with her 24-hours a day and never left her side.

“Both my parents have great employers who let them work around me because they knew that our family is everything,” says Mellisa.

During the months that she stayed in Waikato Hospital, Mellisa did not spend one night alone and always had a member of her family staying with her.

As a result of her chemotherapy, Mellisa began losing her hair, something she initially found hard to face.

“My long hair has always been “my thing” and when I knew I would lose it I really freaked out,” says Mellisa.

Her family once again rallied to support her with her nanny vowing to shave her own hair when Mellisa’s fell out.

To ease the process, Mellisa cut her hair into a short pixie cut and she surprised herself by liking the results.

“It was very liberating to do something so drastic and I really didn’t expect to love it!”

Six months after her diagnosis, Mellisa was given the news that she was in remission.

“When it sunk in that I really was in remission I was just in a state of euphoria!” says Mellisa.

She immediately rang her brother who was at school to tell him the news.

“My brother was just so happy to hear I was going to be ok,” says Mellisa.

“He was so amazing throughout my treatment and didn’t treat me any differently, I was still just his big sister and I am so thankful for that,” she says.

Mellisa says she feels so blessed to be in remission, however, she has a strong respect and appreciation for those still battling cancer.

“Everyone in the M5 ward were so beautiful and I met some amazing people during my time there.”

Along with the support of her family, Mellisa says that the staff at Waikato Hospital were “world-class” and were so sensitive and respectful. Amanda Foster from LBC was also incredibly supportive every step of the way.

Mellisa and her family are now even closer and she says she is so unbelievably thankful for all their support and encouragement.

“When I was in treatment I often felt very alienated, but I knew I always had my family. It was a time where we really learnt to appreciate each other,” says Mellisa.

“I have faith that I now have the chance to live my life as happily as possible which I plan on doing!”