Patient Story Type: Lymphoma

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“I’m 68, going on 69. I’ve got three daughters and five grandchildren. My husband and I moved up to Cromwell from Dunedin close to 20 years ago for a lifestyle change. We had lots of plans for retirement, but life got in the way quite severely there for a bit…”

In 2019, Ann was working as an administrator and, as she describes it, “living an ordinary life”. She and her husband have always been heavily involved in the New Zealand Rock ‘n’ Roll dancing scene and both enjoyed getting outdoors. But life changed quickly when Ann began experiencing health problems.

“I had severe stomach pain and vomiting,” she says. “I would be three or four hours over the loo. It started off during the night and then came during the daytime as well. Doctors couldn’t find any rhyme or reason for it. I had none of the standard cancer markers.”

After seeing two separate GPs and a specialist who couldn’t tell her what was going on, Ann was at her wits’ end. “I was getting sicker and sicker, and losing more and more weight. I was absolutely miserable.”

When a new GP started at the practice, Ann went to her and told her something needed to be done. “I was still going to work, and I really don’t know how I did because I was dragging myself around half dead.”

This GP ran a battery of tests and figured out that Ann had coeliac disease. After changing to a strict gluten-free diet, things were better for about six weeks. “Then I woke up one night and I was vomiting and had these dreadful stomach pains again. That was a real low because, by that time, I’d lost about 20 kilos.”

Ann went back to the GP and told her she didn’t feel she could carry on much longer – that every night she was going to bed scared she wouldn’t wake up in the morning. After a scan at the local hospital, Ann was asked to come back that same afternoon.

“The doctor said they found a mass, and it was cancer. And I said, ‘Thank God. What are we gonna do about it?’ I frightened her, actually. She rang me a couple of times in the next couple of days, making sure I was alright, because she said she’d never had anyone take a cancer diagnosis so well.”

“I was so relieved because I knew once they found something, we could work with it.”

Ann and her husband headed down to Dunedin Hospital that evening. She was diagnosed with enteropathy-associated T-cell lymphoma (EATL), a type of lymphoma that occurs in people with coeliac disease. Five days later, she was in surgery to have the mass removed, and two weeks after that was started on R-CHOP chemotherapy.

While in Dunedin Hospital, Ann was visited by LBC Support Services Coordinator Deb. Deb told her about LBC’s support groups, and Ann remembers thinking she didn’t need a support group. “But one of my daughters said to me, ‘I’ll be really cross with you if you don’t go. You just don’t know how helpful they’ll be ‘til you take part.’”

So, she decided to follow her daughter’s advice and give it a go. “I thought, OK, I’ll go along and see what it’s like. And it’s a great group. Really, really good people. We really support each other, and if someone’s having a down time or has any questions, we all tell them about our experiences.”

Ann’s family was another huge source of support. “Throughout the whole thing, my husband has been an absolute rock. He’s been with me the whole time.” Ann was also blown away by how her daughters showed up for her – one paid for somebody to clean her house for a whole year, another kept her freezer filled with nutritious meals, and the third gave her a very special gift before she went up to Christchurch for her stem cell transplant. She gave Ann her laptop and told her there was a PowerPoint presentation saved on it. “She said, ‘You’re allowed to open one page a day.’”

“So, of course, the first day in there, I opened it up. My daughter had contacted people I’d worked with years ago, contacted my friends, the family, the in-laws, and she’d asked them to send me a message, preferably with a picture of something I’d be interested in. And it was lovely. People I hadn’t even thought about in years, she’d found them and asked them to send me a message.”

The knitting patterns, silly jokes and holiday photos were a welcome distraction through the transplant process. “It was really, really, really hard,” Ann says. “But it gave me my life back again. It was a journey and a half, but it was well worth doing.”

When she returned home, she had to build her strength back up from nothing, starting with walks to the letterbox. Once she could walk to the end of the block and back, she started going further afield on her e-bike. “I really credit that for my recovery – from then on, it was all upwards and I just got better.”

It’s now been more than four years since her transplant, and “life’s good,” Ann says. “I was discharged back in May. I’m fully cured, which is amazing, because we didn’t expect that. They told me that would probably never come, because with a blood cancer they can’t be entirely sure. But she said no, I’ve been absolutely fine for four and a half years.”

Going through lymphoma has completely changed Ann’s outlook on life. “Life is to be enjoyed. I make a real point of enjoying everything. It’s given me such a positive perspective. There are so many really good things to do and enjoy – that’s why I’ve taken up golf, because I always said I’d do it one day. But you don’t know if one day’s actually gonna happen – so get out there and do it!”

It’s in my blood

“I’m a half-Fijian indigenous woman – my mum’s Fijian and my dad is Kiwi German,” Daphne tells me. She’s at the Wellington dance studio she runs with her partner, Pat. Music is playing in the background, and she moves to a quiet space so we can talk.

Aside from God and her family – including Pat and their two children – Daphne’s biggest love is dance. “I’ve been teaching dance for about the last five years, but I’ve been dancing for over 15 years.”

She and Pat run their studio part-time alongside other jobs. At Daphne’s “day job”, she’s a healthcare assistant at the Wellington Blood and Cancer Centre – something she still finds pretty surreal, considering she was once a patient there.

“I’m really passionate about it – truly – I’m so grateful to go to work every day. I’ve only been there a year and have already had so many life-changing moments and get to work with the most incredible people.”

Daphne knew for a long time that she wanted to make a difference for cancer patients (especially young people going through cancer), but after going through her own journey with blood cancer, it took time to process what had happened and clarify what exactly this might look like.

Now in her thirties, Daphne was just 25 when her journey with lymphoma began. “I was really, really busy with dance at the time. I think the first red flag I noticed was when I was doing performances – I remember these two gigs where I was almost crawling off stage, just from those two-minute performances. I knew something was wrong.”

She visited her GP and was diagnosed with a sinus infection. But over the next six months, more unusual symptoms began to crop up. “I was way more tired than usual. And I had these crazy night sweats – I remember one night when I woke up and had to change the whole bed. I was losing a lot of weight and dropped down to 52 kilograms.”

Although she hadn’t been well, she managed to attend a friend’s wedding in November. “It was an amazing night. But I got home quite late and then started to feel a very severe pain in my side from the early hours of the morning.”

Daphne still made it to dance rehearsal that evening. “All the dancers looked at me, like, ‘Oh my God, what is wrong with you?’” Her friends drove her straight to the nearest afterhours clinic. She had some blood tests done and was sent home with painkillers.

“I got home, and literally an hour later, I got a phone call from the Wellington Hospital Emergency Department. They said, ‘We’ve just got your blood results and we need you to come straight here. We’re waiting for you.’”

Daphne was shocked. She headed straight to the hospital and was met with a barrage of tests. “It was just this blur – I got admitted, and for the next four days, all I remember was that they were ruling out one thing after the other, trying to get to the bottom of what it was.”

An ultrasound and CT scan revealed three large masses, and after a biopsy was taken, Daphne was sent home to await the results. “I still didn’t know at that point that it could be cancerous.”

In January, Daphne was back at Wellington Hospital for an appointment with a haematologist. “She said, ‘You probably don’t know why you’re here. We got the results back and we have a diagnosis for you, and it’s cancer.’ But she explained about the type of lymphoma it was – nodular sclerosing Hodgkin lymphoma – and that it’s one of the more treatable ones.”

After a couple of weeks of more tests, Daphne was started on six months of ABVD chemotherapy. Knowing she would probably lose her hair, Daphne took control and ran a fundraising event where she and her loved ones all shaved their heads. “So, I did that before my hair could fall out. But I did get really bad nausea, and I had bad skin problems with folliculitis.”

Daphne was supported through this difficult time by her local LBC Support Service Coordinators. As well as visiting her in the hospital and inviting her along to her local LBC support group, they also helped to connect Daphne with some other young blood cancer patients, including a young man with leukaemia called Kurt. The two became good friends, but Kurt tragically passed away in 2010 after relapsing. “He actually made a documentary about his blood cancer before he passed – it’s called ‘In My Blood’. It’s very powerful.”

And although treatment was tough, Daphne attributes a big part of her recovery to her partner, mum and friends – as well as her love of dance, and the fact she continued with it throughout her journey. “I remember I asked my haematologist, ‘Am I still gonna be able to dance?’ And she said, ‘You do what is going to make you happy. As long as you feel up to it and you have time to recuperate after chemo days, then absolutely.’”

“Dance saved me – it’s in my blood, just like Kurt said.”

Now more than a decade on, Daphne is healthier than ever and is grateful for the opportunity to support others going through cancer. She’s particularly passionate about supporting young people and has been helping out at one of LBC’s support groups for young adults. She’s also eager to increase awareness of blood cancers, particularly in Pasifika communities. “I honestly believe that’s why I went through my journey – I got a second chance to live because I was meant to serve people, and to help in the places I love and care about the most.”

Living for today

“Before I even got diagnosed, 2023 was always going to be my year of gratitude.” Helen is sitting on the couch in her Auckland home where she lives with her husband and son, reflecting on the past couple of years. “Life was awesome. I’d just scored a job in population health at the University of Auckland, and we’d done some travelling as a family to Australia and the South Island.”

It was at her new job that Helen first noticed something wasn’t quite right. “I was typing at work and my left hand started not working properly,” she says. “I realised I was just typing with one hand and texting with one hand, and I thought, this could be a stroke or something… I went to A&E and they said, ‘Look, we think it’s just a pinched nerve.’ But I knew in my gut that something wasn’t right.”

Helen called her GP and managed to get an appointment the next day. Her doctor was concerned enough to send her to the hospital, where she was rushed through to be assessed. After both a CT scan and an MRI scan, she was taken to a ward to wait for the results.

“Eventually, a doctor came in and said, ‘You haven’t been told, have you?’ and I said, ‘What?’ She said, ‘You’ve got a brain tumour.’ My husband burst into tears. I just lost it.”

Helen was booked in for brain surgery the very next week. It was explained to her that there were two possibilities for the type of cancer she had, but that this would only be confirmed after surgery and further testing: “It could either be a glioblastoma cancer which would need to be removed, and it would be terminal because of the size of it. Or it could be lymphoma, which would be the better of the two because there were options to potentially cure it.”

When Helen woke up from her operation, she was told that the surgeon had decided not to remove the tumour because it was quite deep down in an important part of her brain. But they’d taken some samples and sent them off for testing. “He said to me, ‘I think this is lymphoma. I can’t tell you for sure. We’re going to have to wait three and a half weeks.’”

After an incredibly anxious few weeks, the results came back and Helen received an official diagnosis – she had non-Hodgkin large B-cell central nervous system (CNS) lymphoma.

“We found out that they wanted to treat to cure, and I can’t tell you how happy we were. The second part was, ‘However, it will be a gruelling year.’ And I was like, ‘Whatever. Hey, there’s a chance I can live and see my son grow up.’”

Helen was started on MATRix chemotherapy at Middlemore Hospital. “I did one week in hospital, two weeks at home, and that rotated five times without stopping.”

Helen stayed at her mum’s place between rounds of chemo so she could be looked after while her husband worked and took care of their son. She had a stem cell retrieval after the first round, and when her chemotherapy was finally finished, Helen had a month’s break from treatment before her stem cell transplant. Then it was off to Auckland Hospital.

Helen found the stem cell transplant extremely gruelling. “Your bloods go down, down, down. Your emotions go down, down, down. A lot of the time I just thought, ‘Who am I? What have I become? I had an awesome job, a faith I felt connected to, and now I just feel like I have nothing.’ It was really hard.”

Despite the immense challenges she faced, Helen can’t speak highly enough of the support she’s received throughout her journey – from her mum, her family and friends, her healthcare team, and LBC. She says that everyone who helped her along the way is part of her whānau. “Without those people around you, you can feel like you’re going to lose the battle. But I had these people telling me I could do it. I gained strength from people who cared, and it was so far-reaching.”

Natasha from LBC’s Support Services team gave Helen’s mum petrol vouchers to help cover the costs of driving her to appointments, and provided food vouchers for Helen and her family. “Money was so tight – it was really helpful.” Helen also felt relieved to have LBC at the other end of the phone whenever she or her mum needed help. “Just talking to LBC on the phone was really supportive – they were another part of the whānau.”

Helen is thrilled to now be in remission. “I’ve had four MRIs, and they’ve all been clear… Every single time that happens, I celebrate. It’s not just the physical healing, but the regaining of hope and faith, too.”

At this stage, Helen is taking time away from work to fully recover. But her experience of going through blood cancer has influenced her plans for the future. “I want to do something that’s really going to benefit people with disability.”

Although she’s looking forward to finishing her Public Health studies and getting back into work, she’s not in a rush. “I’m taking the time I need to heal, to understand the “why”, and to explore what might be. But also to just live and be grateful for today.”

Fast Facts: CNS lymphoma

• CNS lymphoma affects the central nervous system (the brain, spinal cord and eyes).
• It is an extremely rare and aggressive type of non-Hodgkin lymphoma.
• It is slightly more common in men and in those over the age of 50 years.

 

Taking back control

In 2022, Steve was working as a prison guard when he began noticing symptoms. He was losing weight, and he didn’t know why. Then the pain started.

“I had severe pains in my legs, between my knee and hip… I called an ambulance and got to the hospital. They gave me fentanyl or morphine or something, then sent me home.”

“The third time it happened, I said to the doctor, ‘I can tolerate pain. But I can’t tolerate this.’ Two days later, I was diagnosed with cancer. It was the 25th of July, 2022.”

The day Steve was diagnosed with Stage 4 Burkitt lymphoma is etched in his memory. “The first thing I asked was, ‘Is it treatable?’ and they said that Burkitt lymphoma is aggressive, but it is treatable. I cried, because my wife had passed away from myeloma, and it brought back all those memories.”

This was the beginning of Steve’s six-month hospital stay, where he received four days of chemotherapy each month, alongside other treatments.

“I don’t remember the first month well, because I was hallucinating with all the drugs. At one stage, I had a caregiver sitting on my bed 24/7 just to stop me doing anything stupid. I didn’t know what country I was in.”

Steve also struggled with severe weight loss. “I used to be 86 kilos, and at the peak of the cancer, I got down to 52 kilos. I was too scared to take my shirt off because I could count every rib.”

As he neared the end of his first month in hospital, Steve decided he needed to take some control back. “I kept in the back of my head, ‘The hospital’s doing the medical stuff – I’ve got to do the physical.’”

“Because I was in bed the whole time, I was wasting away. So I staggered out of bed and made my way to the patient lounge. There was an exercycle down there. I used to do it once or twice a day, just slowly, for five minutes.”

Steve found it difficult to accept support while he was in hospital. But one person he did allow to help him was Nicki, a Support Services Coordinator from LBC. “She used to come through the hospital every week or two, and she’d come and have a chat. That was probably more beneficial than the drugs, just having a chat to someone who talks to you with empathy.”

Steve was also grateful for the financial support he received from LBC while he was in hospital. “LBC made sure I didn’t have to pay for my hired TV, which was marvellous.”

Steve now lives on his house bus, and after more than 50 years of employment, his diagnosis has forced him to give up work for good. “It’s an awesome job, retirement, but the pay sucks!”

Despite some remaining side effects of treatment, Steve is enjoying life and making the most of the time he gets to spend with his family. “Every morning, I wake up and say to myself, ‘You’re alive.’ I’ve got a picture of my wife in the bus, and I look at her and say, ‘I’m alive.’”

Fast facts: Burkitt lymphoma

• Burkitt lymphoma is a rare type of non-Hodgkin lymphoma affecting around 15 New Zealanders each year.
• It is an extremely aggressive form of lymphoma requiring immediate treatment.
• It can affect people of any age, but it typically develops in children and young adults.

The wake-up call

“I’m a classic man – I didn’t really listen to my body,” Nic laughs. He’s at his parents’ house in Geraldine, telling the story of how he came to be diagnosed with blood cancer at only 23 years old.

Nic was living in Napier at the time, getting back into work as a white water rafting guide after shoulder surgery. He’d been feeling short of breath and had a persistent cough, but put it down to a recent bout of COVID-19. When his symptoms continued, Nic went to the GP and was diagnosed with asthma.

“Then I started waking up with night sweats,” Nic says. But he assumed he was just wearing too many layers in bed.

He’d also lost his appetite and his weight had plummeted to under 50kg. “I was having one bite of anything and that was filling me up.”

The wake-up call came when Nic’s boss started asking him if he was okay. Nic insisted he was just tired, but his boss could tell something was wrong. After taking a couple of days off work, Nic decided it was time to find out what was really going on.

He drove to a 24/7 clinic in Napier and was seen by a doctor who agreed his cough sounded like asthma. “But he said, ‘We’ll do an X-ray – just on the off-chance it’s something else.’” As soon as the X-ray was done, Nic was pulled into the doctor’s office and told to sit down.

“I said, ‘Ohh jeez, I’m getting told off.’ And he said, ‘No, you’ve got cancer.’”

The doctor couldn’t tell whether it was lung cancer or lymphoma, and Nic was sent to Hastings Hospital for more scans.

The next few hours brought more bad news. After finding out he had Hodgkin lymphoma, Nic was told he had fluid around his heart and a large growth in his chest. “I had a 16 to 18-centimetre mass sitting on top of my heart and lungs, and around the main vein going to my heart. So everything was getting squashed – I had 15% function in my left lung.”

He was moved to the intensive care unit immediately and told he might not make it through the night.

“Mum and Dad were travelling from Geraldine up to Hastings to, at that stage, say goodbye – because that’s what we got told.”

It’s clearly hard for Nic to tell this part of his story.

“In the morning, they put a drain in, and by 11 o’clock they’d drained a litre of fluid out of me.”

That same day, Nic was airlifted down to Christchurch Hospital. After being stabilised and starting chemotherapy, Nic was able to go home. He stayed with his parents in Geraldine and continued fortnightly chemo at Timaru Hospital. At first, the treatment was effective.

“But then I relapsed in January. The cancer mass started growing again.”

Following Nic’s relapse, he was started on a different kind of chemotherapy, which he responded to well. To give Nic the best possible chance, this was followed by a stem cell transplant. “After that, I got sent home, and they said, ‘See you in three months for a scan and a check-up.’ And I’ve been in remission ever since.”

Nic is grateful for the part LBC played in his journey. Kate, a Support Services Coordinator, was a huge source of support for Nic during his treatment. “She was my best buddy. We’d message or phone each other when treatment was happening. She’d often come to the ward and say hello. We’d just have a catch-up and she’d see how I was doing.”

As well as providing one-to-one support, LBC invited Nic to participate in support groups in his area. And he was given petrol vouchers to help with the costs of travelling back and forth from the hospital.

“The support LBC gives to people is incredible… It helps people who are going through the journey to not feel so alone.”

Nic is also grateful for the research made possible by LBC funding. “Cancer is in everyone’s lives now – it’s such a common thing. Donating to LBC helps put research towards finding better treatments for people and a better chance of survival.”

Now that he’s eight months on from the end of his treatment, things are getting back to normal for Nic. He still struggles with fatigue but is back at work on a casual, part-time basis.

When asked if there’s anything he’d like to add, Nic says he wants to stress the importance of watching for unusual symptoms and getting regular check-ups.

His message is clear: “Listen to your body.”

My worst-case scenario

“Before I was diagnosed, I had no clue what lymphoma was. There’s no history of cancer in my family, and I didn’t really have any medical issues before that.”

Li’e and her husband moved from their Auckland home to Sydney in July of 2022. They had been there for less than six months when a close family friend passed away, just before the New Year, and so Li’e flew back to Auckland in January. While in Auckland, Li’e went to the doctor to get a second opinion about a lump on her neck. She had already had it examined in Sydney, but as a Kiwi abroad, visiting the doctor was expensive. “The doctor was pretty concerned with the lump, and they said that I shouldn’t leave the country. They referred me to a radiologist, who then did an ultrasound on it. They told me it didn’t look good – but I had to wait for the doctor to find out more.”

Li’e called her husband, who immediately booked tickets to Auckland to join her on the journey she was about to go on. Li’e was then referred to yet another specialist in Manukau, who did two biopsies, and confirmed it for her: she had Hodgkin lymphoma, stage 2. “I was with my family when I got the results. It was life-changing. It definitely didn’t sit well… but I think it affected my family more than me. I was more prepared for it. I had already had this lump on my neck, plus itchy legs and night sweats.”

Li’e had tried to protect her family from worrying about her while she went through the process of being diagnosed, until she knew for sure what was going on. “I knew it wasn’t looking good, and that was my worst-case scenario – finding out that it was cancer.”

“We had a fair idea of what it could be… we were just hoping it wasn’t.”

Because she was only 25, Li’e was offered two options for chemotherapy. “I could either have the treatment catered to kids, where we’d do chemo for three or four months with the hope of avoiding radiation. Or, the other option – the adult option – as I call it, was to go full steam ahead with both chemo and radiation.” Li’e was lost. Not only had she not heard of lymphoma before, but she wasn’t familiar with chemotherapy either; what it looked like or how it worked. “I asked my haematologist what to do, and he thought the best option was the kids one, to avoid radiation. And in the end, that was definitely the best option for me.”

Li’e went through four months of chemotherapy and dealt with some difficult reactions to it. “These included neuropathy, achy joints, constipation and low white blood cells. I also had to have blood transfusions, and I ended up being hospitalised after each round of chemotherapy. Managing things at home during my treatment was hard – especially coming off steroids.”

Li’e is grateful for the support of her husband, family and close friends. “They’ve supported me unconditionally during one of the hardest trials I have faced.” Tim from LBC played a key role in helping Li’e manage, too. “I got in contact with him. He was super helpful. He supported me and visited me in hospital, gave me petrol vouchers. Even after treatment, he was able to connect me with another girl who had Hodgkin lymphoma.”

“That was cool because she was around my age, she was about 23 or 24 and we could talk about our experiences. Like, losing our hair – for me, that was really hard to go through and to accept that that was part of chemo. It was nice to talk to someone who understood what that was like.”

Li’e still has regular check-ups with her haematologist, and she’s happy to report that, as of recently, she’s almost all-clear from blood cancer. After moving overseas, then being forced back home due to such a serious illness – the news that she is OK is bittersweet. “This whole past year has been about looking after myself and just surviving through treatment. That’s all I knew. So re-learning how to go back to normal life has been interesting. Eventually, my husband and I want to return to Sydney, go back to our jobs and back to our lives.”

“My body got so drained and overwhelmed during treatment, and now that I have my energy back, I want to get back out there and bring awareness to what people like me go through with blood cancer.”

Fast Facts: Hodgkin lymphoma

• Hodgkin lymphoma makes up roughly 10% of all lymphomas with about 135 diagnosed in NZ each year
• The majority of those diagnosed are aged between 15 and 35
• Hodgkin lymphoma is the name given to lymphomas that have a special kind of cancer cell, called a Reed-Sternberg cell.

Can we start this afternoon?

Marion and her husband were both high school teachers before they retired together at the end of 2020. “We didn’t want to become sit-on-the-couch type of people, so we bought ourselves e-bikes and planned to do lots of gardening. That’s why I felt so frustrated when I started to get a sore back, in late 2020… I thought I must have injured it when I was outside, so I didn’t do anything about it.”

The initial COVID-19 lockdowns had ended, and the couple were enjoying getting out and doing things. But back pain and fatigue started to get to Marion. “And I often felt faint – one day, I actually did faint at a friend’s house… that’s when they said to me, Marion, it’s time to do something about this.” By this point it had been six months of hoping things would improve and Marion agreed it was time to see her doctor.

Marion’s doctor immediately reassured her. “He said to me, ‘We’ll figure this out.’”

Marion had some tests done and was referred to haematology in Dunedin. She learned that she had Follicular lymphoma, a type of non-Hodgkin lymphoma, and would need to begin treatment soon. “I said to the haematologist, ‘OK, can we start this afternoon?’ and she smiled and said, ‘Er, no, not this afternoon but we won’t be slow about this.’ Sure enough, just a few days later I was back there getting treatment.”

It was there in hospital that Marion was visited by Deborah from LBC. Deborah explained some of the ways that she and the team at LBC could support her, such as providing information resources, support meetings and vouchers. Marion knew she couldn’t go through this without help. “I wasn’t the sharpest at that stage, and I relied on my husband a lot. I remember thinking, ‘This would be so much harder if I were alone, or if my children were small.’”

“I felt so encouraged by having my family around, and my friends… I had people who’d help clean my house, provide lovely meals, pray for me and drive me around…. I feel like one of the lucky ones.”

She’s also grateful to the doctors and nurses who treated her. “I was a real person to them, not just a ‘case’ in hospital.”

Now, thanks to them, Marion is back enjoying life. “The biggest tumour I had has shrunk a lot, and they’ve called it ‘partial remission’. It means I can live a pretty normal life. Regular infusions of rituximab are keeping the cancer under control. So I’m happy.”

Marion’s loved ones are thrilled for her too. “During our first big trip on our bike after chemo, we sent a photo to our family WhatsApp group. Everyone in the chat responded with smiles and hugs, because they understood what that meant.”

“I may not be as fit as I used to be, but I can do the things I want to do. I can make choices about how I spend my life again.”

Fast Facts: Follicular lymphoma

• Follicular lymphoma is a type of non-Hodgkin lymphoma affecting approximately 195 New Zealanders each year
• It gets its name from the circular arrangement of lymphocytes inside the lymph nodes
• Follicular lymphoma usually grows slowly over months or years.

OK, let’s go for it

On 28 October, 25-year-old Makayla was driving home from work when she noticed her neck was swollen. Once home, Makayla noticed a lump just above her collarbone.

Makayla also had a persistent cough, but she had already been sick for a month before that – so she assumed her swollen neck was related.

She went back to work the next day. “I showed a client, who used to be a nurse, the lump, and he said I needed to get it seen straight away.”

In a few days, Makayla saw her regular GP, had an ultrasound done, confirmed that she had an abnormal mass in her neck, and had a CT scan. She was glad to get a break then, as her family went on a holiday to the West Coast.

“I was pretty sick, but I really wanted to go. We don’t get to go on many holidays.”

When she got back home, she saw an Ear, Nose and Throat specialist who noticed her chest was swollen too. The specialist wanted to schedule a biopsy but Makayla needed to be in Auckland for a work conference.

“Later that day, he said he could do it tomorrow. Then, miraculously, he said he could do it now! I was like oh, jeez, OK! I didn’t even know what was happening, or what a biopsy was, but I said OK, let’s go for it.”

Makayla had the biopsy done in her neck. She was in Auckland at her work conference when she received the phone call.

“Hearing that I had Hodgkin lymphoma was emotional. I was glad that I was in Auckland and could distract myself.”

“I came home and saw the haematologist who told me how serious it was, and that she didn’t know how I was still going with having stage 4 Hodgkin lymphoma. I had to stop working – and that was a big shock! In the movies, people with cancer still work and do activities. But I had to isolate, and I couldn’t even go to church.”

Makayla also had to think about IVF, as the treatment could impact her ability to have children. She never thought this would be something she’d have to think about at 25.

Makayla found ways to cope with, and make treatment more bearable. At her chemo appointments, she asked her friends and family to vote on ‘colour polls’, and choose a colour she could theme her chemo visit around. So far, she’s worn clothes and painted her nails orange, purple, and green, to name a few. Some people have joined in with the colour themes too.

She also had help from LBC’s Deb. “Deb sent us petrol vouchers to help me get to my appointments, and food vouchers too. She visited me in hospital when I was having one of my chemo infusions and gave us information packs to read. She’s been really helpful.”

Makayla is still going through her treatment, but feels positive about where her journey is headed.

“My faith is the most important thing in my life. I’ve just given it all to God and said to myself, ‘I know that He will be my strength when I’m weak. I have a lot of peace about it, and I’m very grateful for everyone that is helping and supporting me through this journey.”

Fast Facts: Hodgkin lymphoma

• Approximately 130 New Zealanders are diagnosed each year
• It has 5 sub-types and has a special kind of cancer cell called a Reed-Sternberg cell
• It is most common in people aged 15-30.

S**t. Should that be there?

Ron and his wife Rachel are sitting together on the couch, while a storm rages on outside their West Auckland home. They’re wearing hoodies, with Rachel in pink and Ron wearing one that is half-zipped up. His head is snug inside a beanie.

They’re sitting on opposite edges of the couch, just close enough for their hands to touch – or, more likely, for someone’s leg to be slapped for making a cheeky joke. That happens a lot on Ron’s side of the couch.

For example, when Ron describes his hair loss due to chemotherapy:

“‘I lost every hair on my body – legs, under arms, my bum…”

Rachel turns to him, and with a funny look on her face, she says: ”Excuse me, you don’t need to go that far!” “What? We’ve all got bums!” Ron chuckles back.

The couple have adult children – a son and a daughter, both in their 40s, as well as a 16-year-old grandson and a 2-year-old granddaughter. “We’ve been together since we were 13 and 14. We’ve got a couple of kids who have left home.”

Between the two of them, they have worked all kinds of jobs throughout their life – from managing a fast food restaurant, to driving buses, to operating a health food company.

“I stopped working after the second cancer.”

It all started 10 years ago. Ron had been feeling slightly unwell – but he didn’t think anything of it until he noticed a small bump under his arms.

“I was in the shower, washing under my arms and I noticed a small bump. I thought, s**t. Should that be there? So I showed Rachel, and she thought I should go and see my GP.”

They went to a private hospital, and had all kinds of tests and a biopsy done. Rachel says, “They virtually told me to take him to Auckland hospital immediately.”

“It grew to become a 9kg mass under my arm. It split all of my skin open, and they couldn’t take it away – they just said I needed to have a lot of drugs.”

By now, Ron had been diagnosed with Burkitt’s lymphoma and he immediately started on a journey of six months of intense treatment, in and out of hospital. Ron says, “My kids were a massive support. My daughter did a lot of homemade cooking for me, because I couldn’t eat hospital food.”

Eventually, Ron improved, and after six months post-treatment, Ron showed no sign of any cancer left in his body.

Ron says, “At 5 years with no cancer, they say that you’re pretty much cured and don’t come back. But after 5 years… I got another dose of lymphoma and this time, it was Large B-cell lymphoma.”

Rachel chimes in, “It was almost five years to the day, in fact. He had been unwell for a while, and his neck was sore. The GP treated him for different infections… but his weight was dropping off quickly. We had a private MRI, and that picked up a mass in the back of his nose and throat. Then, we were immediately back in haematology.”

The haematologist told Ron that if he didn’t do something about it, he’d have roughly 6-8 weeks left to live. He could get palliative care to extend that time… or he could receive some intense chemo.

“And, he chose chemo,” Rachel says, “Thank God, he chose chemo.”

Ron thinks about it for a moment. “Yeah. It wasn’t an easy choice, but I didn’t want to mess around with it. I didn’t really want to die. That would be such a nuisance.”

“Yeah,” Rachel smiles, “Such a nuisance.”

It was at this point that the couple met Melody from LBC on the hospital ward. Melody invited them to their first support group.

“I had to drag Ron to the first one,” Rachel laughs, “He really didn’t want to go – but he got so much out of it that now he’s the first one to ask, ‘When’s the next one?’”

“Yeah,” Ron says, “It just helped me so much because I got a huge lift. Even though I felt awful, it gave me hope. And now I’m there in case someone else needs hope.”

“There’s just something in here -” Ron touches his chest, and says, “In my heart – it’s something that I just feel – I’ve come this far, so I can help someone else and tell them what I’ve learned.”

Incredibly, Ron finished his treatment 2 years early. “The consultant was like, ‘I don’t think we need to keep seeing you. I really think it’s gone, our door is always open but let’s finish early.’”

That was over 5 years ago, and now Ron only needs to see his GP for a check-up once a year.

“Sometimes even now, I think in the shower – ‘Today, am I going to find a bump that shouldn’t be there?’ But, I’m OK. I’ve got plenty of bumps. But…” Ron says with a cheeky grin, “That’s just body fat.”

Fast Facts: Burkitt’s lymphoma

• Burkitt’s lymphoma is a rare and very aggressive type of non-Hodgkin lymphoma, accounting for around 1% of all lymphoma diagnoses
• Approximately 15 New Zealanders are diagnosed each year
• It is more common in men and children.

Making new memories

“I saw the doctor and I explained to her, ‘I only want to deal with you.”

“I said to her, ‘I have talked to so many doctors in the last three months and I can’t remember anyone’s name – that’s how many there’s been. All I ask – can I just stick with you?’ And she understood that, and she said yes.”

“She took me into the room and she sat me down with a haematologist. And they said, ‘Yep. You’ve got cancer. It’s a blood cancer.’ ‘What type?’ ‘Hodgkin lymphoma’, and I asked what stage – ‘Stage 4.’ ‘OK, cool. Do I at least have a chance to live?’ ‘Oh, 50/50’”

“‘OK, sweet. That’s a chance.’”

Coleman uses such casual words to describe this moment, but his feelings are written all over his face – this is a painful memory.

It began when Coleman started experiencing terrible fevers. He was drinking dozens of bottles of water a day and sweating right through his bed sheets. When he visited his doctor in Rotorua, he was given paracetamol and told to return home.

“My sister gave me a call, and she was like ‘Get your *** to hospital!’ So I did.”

There was no improvement; by the next week, his condition had worsened.

“My temperature was still all over the place. My eyes were bloodshot as. That was scary. So my sister gave me a call, and she was like ‘Get your *** to the hospital!’ So I did. They gave me even stronger paracetamol…I took that for a while and it still didn’t work.”

When Coleman asked for medical help a third time, he explained that he’d never felt like this his entire life. His face had even started to swell up. His doctors were now very concerned, and they kept him there to do tests.

“They were trying to figure out what was wrong with me. Then it got even worse. I couldn’t sleep, I was going to the toilet five or six times a night.”

Coleman had a few CAT scans, MRIs, a biopsy and had his bone marrow tested. Still, nothing was found. “I had a funny feeling about what they were looking for, but they were looking in the wrong area.”

The second time he had a biopsy, he had lumps all over his body. Looking back, he couldn’t believe that he was still walking around.

“I didn’t want to lie down because I’d look like I was dead. I mean, I looked like I was dead anyway. I felt like giving up.”

By this point in 2020, COVID-19 restrictions meant that his hospital visits were limited.

“I just really missed my family. So I asked ‘Can I at least go home to be with them? I don’t want to be dying here.’”

“My mum died here. I don’t want to die here.”

Ten years earlier, Coleman’s Mum had passed away from cervical cancer. He and his siblings were only told about her diagnosis when she had a week left to live.

“That wasn’t enough time. How can we prepare for anything, when we know we’re about to grieve?”

Coleman didn’t want this for his family. He was thankfully allowed to go back home. Then on Friday night, he got a phone call.

“Ring, ring. ‘Coleman, what are you doing on Monday?’ ‘I don’t know, what am I doing on Monday? You tell me.’ They said to come up to Hamilton, and from then on, I knew it. I prepared myself for it.”

This was when he was told he had Hodgkin lymphoma.

Coleman was put on different medications, given blood transfusions and finally chemo – over 20 pills a day. “When I was in Hamilton, that was the best place I could have been. My face went down, and my body started to get better.”

Suddenly, Coleman was in a completely different headspace than just six months earlier.

“The cool thing was finding a reason to live. I use my kids, pretty much, as a reason to stay alive. I don’t think my kids realise how much they have impacted me.”

“And Sean too, from LBC. Sean played a massive part in our lives. I’ve been to his support meetings and I like sharing my story and hearing other people’s journeys.”

“And when Sean gave us vouchers…I’m not a person who likes to get things for free, so that broke my heart. I’d never ask, but I put my pride away and accepted the help that I needed at the time.”

Coleman not only accepted help, but he provided it too – to thousands of people.

Coleman has a TikTok account where he posts videos relating to his blood cancer journey. He shares advice, and connects with his followers; many of whom are also patients.

“A lot of my followers know my journey and they’ve been there since day one.”

 

Fast Facts: Hodgkin lymphoma

• Hodgkin lymphoma makes up roughly 10% of all lymphomas with about 120 diagnosed in NZ each year
• The majority of those diagnosed are aged between 15 and 35
• Hodgkin lymphoma is the name given to lymphomas that have a special kind of cancer cell, called a Reed-Sternberg cell.