Patient Story Type: Lymphoma

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.

A reason to fight

“Someone said to me, ‘It’s amazing that you haven’t had a break down yet.’”

It is. In just a couple of years, Marion has dealt with a lifetime of loss, all while coping with blood cancer.

“One day I had a really sore side. I got rushed to hospital because my doctor thought I had gall stones. After the scan, they thought I had a haematoma, so I was told to come back in six months.”

Six months later, she returned and had her lymph nodes taken out of her arm to be tested. When the results came back, she was diagnosed with follicular non-Hodgkin lymphoma. However, this wasn’t even the most challenging thing she was facing in life at the time.

“While going through all of that, I buried my brother and my father. And then my mum got sick, so I went to go look after her. She passed away before I started chemo.”

Marion was devastated. Having lost both parents and her brother, she needed a reason to fight. She found that reason when she found out that she was going to become a grandmother. This kept her going through her chemo.

“I also volunteered at The Salvation Army. It was good for my wellbeing, even though I would get tired easily. But, my purpose behind it all was my grandson.”

Being kind, helping people, and taking one day at a time is what has helped Marion cope with her lymphoma, as well as her small but very close circle of friends.

“My friend Abe was there when my family died. He treated me like a big sister, and I know if I asked, he’d drop everything to help me. And there’s Sharlene, my cousin. She’s the one I talk to.”

“I’ve also got Peter. We’ve got children together and he knows I’m sick, but we are still there for each other.”

Marion was also supported by Nicki from LBC. “I knew that I could ring her up any time to talk to her. She advised me about quite a few things and put me in touch with a counsellor, which I needed.”

“To be honest, I just take one day at a time, like that Cristy Lane song…”

I’m only human, I’m just a woman.
Help me believe in what I could be, and all that I am.
Show me the stairway I have to climb.
Lord for my sake, teach me to take one day at a time…

 

Fast Facts: follicular non-Hodgkin lymphoma

• Follicular lymphoma makes up about 20% of all non-Hodgkin lymphomas with roughly 180 diagnosed in NZ each year
• Follicular lymphoma gets its name from the circular arrangement (follicles) of lymphocytes inside the lymph nodes
• Follicular lymphoma usually grows slowly over months or years.

 

You never think it’s blood cancer

Tai Agnoletto is so in touch with nature, that if the earth had a beating heart – it would probably be in sync with her heartbeats. Each beat would rise to a tall mountain that she has climbed, and then lower to a deep glacier that she’s photographed. 

“I am a complete mountain and snow person, and I never knew that until I moved to Queenstown” 

It was also in Queenstown, in February 2021, that Tai discovered something else about herself that would change the course of her life. After two months of back and forth between her GP, several clinics and her haematologist – she was diagnosed with Hodgkin lymphoma. 

“But before that, even when I was traveling in Japan two years ago, I had cancer and I didn’t even know. I’d put all the symptoms aside and say, ‘hey, I’m having night sweats – but I’m just stressed at the moment.’ Or, ‘I’m super fatigued, but that’s because I’m working 70 hour weeks” 

Tai is a hard worker, and to compensate for that – she also has a lot of fun. Tai loves travelling the world, chasing auroras and being around nature. This is how she spent her early thirties. She had no idea that deep inside, her body was fighting a serious battle and she was gravely ill. 

“See, it’s funny with blood cancer…you always find an explanation for your symptoms. You never think it’s blood cancer, you think it’s something else.” 

But, by now, Tai knew exactly what she was dealing with. She had accepted her diagnosis and she went head first into treatment. It wasn’t easy. “My haematologist told me that I wouldn’t be able to have kids after the treatment.” 

This was because of the effects of the chemotherapy. She suggested to Tai that they could look into freezing her eggs, but advised caution when considering this, as it would delay the treatment by 2-3 weeks. 

Tai agreed. “I’m like, ‘I’ll tell you what. Things happen the way they should. If I am to be a mother, then that will happen for me, somehow. I’m not going to worry about that right now.” 

It’s remarkable how Tai can accept a challenging situation with grace and kindness to herself. Sometimes, she can even have a little fun with it. 

“I was always visualising things. I’d look at my PICC line (the tube inserted into your skin to give medications), and I’d think, what if I was in X-Men? Like, imagine if I was a bionic human being!” 

But, Tai knew that she wasn’t really bionic. Like many people in her position, she needed support and when Deborah from LBC came to visit her with open arms, Tai graciously accepted her help 

“I was like, give me everything! If I don’t need something, I’ll press pause, or stop. But at this stage, just throw at me whatever you have and we can go from there.” 

The most practical support that Tai was grateful to receive from LBC was fuel vouchers, because she was constantly driving in and out of Clyde – a town over an hour away from her home for treatment. 

And LBC’s support groups were the most meaningful. Tai remembers one session in particular; “They all realised that I was still actively going through chemo and they were looking at me like I was a ghost! They said, ‘Are you serious? You drove here?’, It was really funny.” 

“They were like – ‘look at your hair! Is that a wig?’ and I said, ‘No, it’s my hair.’, They couldn’t believe it!” Their feedback gave Tai a huge boost of confidence. 

Perhaps, her motivation to get outdoors again had something to do with it. “Throughout my whole treatment, I had a plan of the hikes that I wanted to do after finishing treatment. It would be a progression – I understood that my body would be rebuilding, little by little, and I’d need to be patient.” 

Tai has spent a lot of time reflecting on her cancer journey. She’s no longer going to accept 70 hour work weeks. “If I die tomorrow, I don’t want my epitaph to say, ‘She was a duty manager at a hotel. I want it to say… ‘She was a dreamer, she was a hiker, she was a snowboarder,’” 

She’s already made her next travel plans for Iceland, and she’s also looking forward to visiting her parents back home in Brazil. 

“You live so much more intensely after cancer, because you really understand the meaning of the phrase, ‘you never know about tomorrow’.” 

Fast Facts:

• 120 people are diagnosed each year 
• Majority are adolescent and young adults – 15- 35 years old 
• A key difference from non-Hodgkin lymphoma, is the presence of Reed-Sternberg cells (unusually large, malignant mature B-cell lymphocytes) in Hodgkin lymphoma patients