Patient Story Type: Lymphoma

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 

More than alive – kicking!

“Why are these pesky mortals doing another medical procedure on me!?” This was running through Wendy Harrex’s mind while in intensive care. 

“I got really close to dying. I felt so awful, I was ready to die.” It’s a humbling thought. Wendy had spent an entire year feeling ill, with her doctor unable to figure out what was wrong. Endless infections, fatigue, and finally symptoms of what seemed to be acute onset rheumatoid arthritis.  

”I was referred to a rheumatologist.” On Christmas Day in 2017, before her test results came back, her condition suddenly worsened. She was rushed to hospital, where she was diagnosed with a lung infection – and follicular lymphoma. 

She wasn’t shocked or overwhelmed, but grateful that she finally had an explanation. “Christmas and January are a special time for my family and me, because I almost didn’t survive.” 

Her story includes alternating big scares and rounds of chemotherapy. “Now I’m on a low dosage regime of tablets. It’s chemotherapy that I take three days a week. That has transformed my life and I feel better than I have in four years.” 

In fact, just last summer, Wendy dusted off her e-bike, which she had previously been too weak to use, and completed the rail trail in Central Otago. 

Wendy had found it hard sitting on the sofa for months during 2018 while facing her diagnosis, and wondering what lay ahead. Here she gives credit to LBC – although it wasn’t straightforward at first. “When I first met the person from LBC in the oncology ward, I thought, what’s their job? Soothe the dying brow? I was a bit sceptical.” 

“But subsequently I have attended the patient seminar in Wellington, the Christchurch webinar; my partner has gone to LBC’s support group for carers (Support Persons Connect) and we’ve seen the development of a really good support group in Dunedin. Contact with other people living with blood cancer has been really important to me.” In short, she has learnt how meaningful LBC’s work can be for patients. 

For Wendy, life is for living – “Try to be positive. Believe that you’re alive and enjoy every day – that’s why I like to say, ‘I’m alive – and kicking’.” 

Fast Facts: Follicular lymphoma

• Represents around 20% of all non-Hodgkin Lymphomas 
• Gets its name from the lymphocytes arranged in clusters called follicles within the lymph node 
• Affects both men and women, but is slightly more common in women. 

We had a bit of a battle on our hands

Imagine – you’re in the bathroom, staring at your toothbrush, trying to figure out how to get it wet. Thirty minutes go by and you just stand there, blankly. It’s a simple task – why can’t you do it? Ross Baker says, “Because you’re that fried with the chemo.”

‘Fried’ was putting it lightly. Ross went through a staggering amount of chemotherapy in just his first session – over 100 hours.

This kind of disorientation was unfamiliar for a guy like Ross – a self-described typical Kiwi bloke into muscle cars, competitive golf and spending time with his family.

It all began one day when Ross was struggling at a golf tournament; something felt off. He went to the doctor and had blood tests done at 3pm in the afternoon. By 7pm, he was told to report to the hospital immediately.

“Within a few hours, they found all the tumours through MRIs and scans, and they basically told me to get my lawyer in to set up my will.” Ross was diagnosed with a very rare and aggressive form of double-hit lymphoma. He was told that he had only 5-7 days left in his life.

“I didn’t really understand it, because I had still been walking around. I thought…‘you can’t be well enough to walk around, and then just die?’”

Ross refused to accept this. His doctor said, “Well, what’s your reasoning?”, to which Ross replied, “Look mate, I’ve got too many people I want to p*** off, before I die!” His doctor just looked at him, and burst out laughing.

Ross must have been doing something right – as he survived well beyond day number 7. It was a good thing that he had a sense of humour, because it was only going to get harder from there. “It was like bang, bang, bang. I basically spent from October until New Year’s Eve in hospital, in and out with treatments.”

Bang.

One month after his diagnosis, it was his daughter’s 14th birthday. He was determined to be well enough to buy her a present, because suddenly, every single day, moment and gift could be their last one together.

Ross bought her a jewellery box for keepsakes. It contained mementos, like the identification band she was given in hospital when she was born.

“The day of her birthday was tough. I broke down that night. I was quite upset.”

“We got some helium balloons, and my family wrote their own thoughts and messages on them, and let them go. It helped everyone. That’s when we realised we had a bit of a battle on our hands.”

Bang.

One of the hardest parts about coping with his blood cancer, was managing the feelings of the people around him. “I had to ask some friends and family to give me space, as I felt all they wanted to do was memorialise me, by crying and taking photos for their memory books”

“You get people visiting and they’re like, ‘oh, what have you got?’ and they’re not doctors. Well…if you’re not a doctor, then just say you can’t help. And other people say, ‘how long have you got to live?’ and it’s like, ‘what, do you want to book your day off work now?”

“Come on, guys. I’m fighting for my life here, and you’re asking me when I’m gonna die?”

Bang.

Ross was introduced to LBC Support Groups, through LBC Support Services Coordinator Natasha. While he found the groups useful, he needed his partner Michele with him for support.

“Because when you’re in there, it’s like white noise. Michele would takes notes and then we would talk about them a couple of days later”

“I was in insane pain. I wasn’t moving around like I was used to, I was vomiting. I wasn’t focussed on listening. I was focussed on breathing, trying to get food in, sleeping. Trying to get through the pain.”

Ross took a deep breath, he rested, and he got through the pain. Eventually, the initial battle was won, and he came out the other side of his lymphoma. He is doing better today, but he knows that there’s a chance his condition could worsen.

“My energy levels are down, so I use a golf cart on the course now. I can’t walk around. I’m forcing myself to do some building on the house, but that takes forever. But, I can do stuff. I can walk the dog, I can vacuum the house. I can do the dishes.”

Being able to do the little things makes a big difference for Ross, like brushing his teeth or cooking for his partner. And, the meaningful stuff too. Like celebrating his daughter’s birthdays.

He’s also back on the golf course, bringing his cancer journey full-circle. “I really pushed myself to do that. I won the club champs, four months after I finished treatment. I won by ten shots, with 65, 65”

Fast Facts: Double-hit lymphoma

• An aggressive form of non-Hodgkin lymphoma
• Affects the white blood cells called B-lymphocytes or B-cells
• Relatively rare and makes up approximately 14% of aggressive B-cell lymphomas

Overcoming all Obstacles

In early 2020, Mile Nafatali had soreness in his shoulder. The 22 year-old, who worked as an Administrator at a medical centre, just thought it was from playing sport.

When he began coughing up blood, he decided to get it checked out. After a visit to the GP, they found a lump in his chest. A biopsy a few weeks later confirmed it was Primary Mediastinal large B-cell lymphoma Stage 4B.

The diagnosis came as a huge shock to Mile and his family: “I was quite healthy, active and feeling well. Because the cancer was mostly in my bones, I wasn’t in pain… I couldn’t believe it.”

Over the next six months, he had six rounds of chemotherapy. A scan to check its progress found the chemo wasn’t working, so he was given a higher dose of three more rounds.

After nearly a year of chemo, Mile needed a Stem Cell Transplant (SCT). By the time he travelled from Dunedin to Christchurch with his mum and sister, he could barely walk. A PET scan showed the lymphoma had progressed rapidly. His SCT was cancelled.

Mile remembers the moment clearly:

“My doctors said I had no more options left; I only had a few months to live. I was in total shock. I was put in a wheelchair, because they said the cancer would break my bones. I was sent home to be with my family and basically prepare to die.”

Despite the devastating news, Mile’s family were not giving up. After meeting to discuss what they could do, they immediately reached out to the top clinics around the world to see what their options were.

Eventually they got in contact with the Peter McCallum Cancer Research Centre in Melbourne. Doctors there offered a potentially life-saving treatment called CAR T-cell therapy, which involves taking blood and modifying the “T-cell” from the white blood cells before reinserting it into the blood system.

“The only catch was the cost,” Mile laughs. “I thought it wouldn’t be possible. But incredibly, my doctor helped push through special funding to cover the costs. I was so thankful.”

His excitement quickly shifted to worry. Just as he was preparing to travel to Melbourne, New Zealand went into lockdown.

“That was on Friday, and by Tuesday, I needed to be in Melbourne to start treatment. Since flights weren’t available, the only way I could get there was a private Medivac helicopter, costing $80,000.”

He reached out to LBC who sprang into action straight away.

“It was incredible – within a few hours, they reached out to Seven Sharp, who were very supportive and geared up to run a story to raise the funds. But then David Downs, a lymphoma survivor himself, stepped up. He found some private donors to cover the cost…I couldn’t believe it. I was headed to Melbourne with my mum.”

In March 2020, Mile started two long months of treatment, and then waited for 30 days to see if it worked. His partner, and sister came out to support him and were there on the day he got the good news:

“The scan showed the cancer was completely gone. That was the greatest day ever.”

On May 1st, 2021, he headed back home to Dunedin and reunited with his family.

Today, Mile is in remission and is focussed on staying healthy:

“Physically, a year and a half of chemo and treatments took its toll. I’m currently in rehab with my physio, getting my body into shape and regaining lost muscle. At this stage my goals are to get back into work full time or possibly going back to study.”

He’s looking forward to spending more time with his friends, celebrating birthdays, and going on trips. He joined LBC’s Consumer Advisory Board to give feedback on support services and resources. A new David Downs documentary featuring Mile’s inspiring story is coming out soon.

Mile has a new outlook on life, and credits his resilience to the amazing people who helped him get through:

“I realised how precious life is, how we take things for granted. I’m so grateful for the huge amount of love and support from my family, my doctors, and the incredible LBC Support Services team who looked after and cared for me.”

Where flowers bloom, so does hope

Five years ago, on her daily bike ride to work as an ESOL literacy tutor, Celia Hope felt a throbbing discomfort in her abdomen. She didn’t take too much notice of the pain; she was fit from cycling for many years.

But over the following weeks, she experienced dizziness and bloating when she ate.

“I couldn’t eat much at mealtime. I was so uncomfortable I told my husband, Tim: ‘something isn’t quite right; I think I need to get this looked at’.”

After Christmas, her GP ran blood tests and sent her for an ultrasound which picked up the enlargement of her spleen and liver. From there, she was referred to haematology and had a CT scan and bone marrow biopsy.

“Within a month, I was diagnosed with splenic marginal zone lymphoma (SMZL). It’s a mouthful.”

SMZL can be very difficult to diagnose as it’s rare (accounting for roughly 1% of non-Hodgkin’s lymphoma cases) and it can look like other types of lymphoma.

“That was a shock. It was difficult, because my mother’s health was deteriorating, and she passed away within a couple of days of my diagnosis. A double whammy.”

After immunotherapy treatment, the haematologist told Celia she was in remission. She spent the next year in relatively good health.

“In 2018 I felt really good. It was coming up to my 60th birthday, and I thought, I want to do something significant. I did a fundraiser for LBC! My plan was to cycle, cumulatively, 600km over the month of October, and raise $2,000.”

Celia surpassed her goals: “I cycled 700km and raised almost $4,000.”

But at the end of 2019, the bloated feeling came back. Another CT scan showed her lymphoma had resurfaced and she went back into treatment.

Tim was in his element as a carer and provider – giving her injections and contacting LBC Support Services when Celia couldn’t. They went to LBC support group sessions together and were grateful for the visits from Matt in the Hamilton Support Centre. But it was Tim’s positive attitude – and Celia’s – which helped her the most.

“Tim believed I would get through it, he was there to support me and would often leave me little encouraging notes.”

One of the hardest parts of her treatment was that she couldn’t join Tim for the bike rides they loved so much. “He’d pick flowers out on his rides and bring them home for me.”

Flowers were part of a tradition between Celia and Tim, who met on a bicycle tour across Canada in 1997 – back then, Tim helped Celia decorate her bike with daisies he had picked.

“He’s amazing. He was always there when I had the infusions. Once we got into lockdown, he couldn’t come anymore, but he was always there to pick me up – in both senses of the word.”

But on a Sunday morning in June, Celia’s life turned upside down once again:

“I was still trying to cycle a bit. We biked our usual route to the farmer’s market in Hamilton. On our way there, Tim was hit by a truck and was immediately unconscious. He spent five days in the hospital. He didn’t make it.”

“That was my biggest tragedy, yet I still had to get through treatment – that was my focus. I knew that Tim would have wanted me to do that.”

The grief was overwhelming, and chemo left her with terrible wrist pain from the IV. But Celia’s two brothers, cousin, sister, neighbours, friends, her dog Lucky and the LBC team gave her the support she needed.

After Tim’s death, Celia got a phone call from Zoe, an LBC Support Services Coordinator:

“That was just amazing. She was so caring. She helped me through the last treatment and put me in touch with the nurse specialist that I felt most comfortable with.”

Today, Celia feels healthy and positive about the future, and hopes to get more involved in advocating for cycling safety.

“At the end of January, I had a memorial gathering for Tim in our garden and had a memorial seat made. It’s outside our house, on the roadside and daisies are just starting to bloom beside it”

Naomi Stephenson was helping to care for her dying mum in June 2019, which would understandably be a stressful time in anyone’s life. However, the hits kept coming when a lump appeared under Naomi’s chin, and her journey with blood cancer began.

“It’s been a comfort to know that Mum never knew, as she would have been upset, but I ended up being diagnosed with follicular lymphoma. My mum died on June 26th, and I was diagnosed on August 2nd.”

Naomi then underwent CT scans to determine how advanced her case was.

“I was either stage three or four, but they weren’t sure. If it’s in the bone marrow, it’s stage four, but you need an invasive procedure to find that out.”

Naomi’s oncologist decided that because he would recommend the same treatment for stages three or four, the bone marrow biopsy was unnecessary. However, the CT scan could reveal the spread of the disease.

“It was above and below my diaphragm. The biggest one was tucked into my pelvic bone, and it was six centimetres in size.”

Because follicular lymphoma is a slow-growing form of lymphoma, you may be placed on ‘watch and wait’, also called ‘active monitoring’.

“That’s hard for people to understand because you tend to think with cancer, that you take care of it, and that’s it.”

Naomi was curious about when treatment might be required, so she had a chat with her oncologist shortly after her diagnosis. When pressed, he estimated she might need treatment in one to three years. Unfortunately, her cancer progressed quicker than that.

“Six months later, I had CT scans, and it had grown and spread quite a bit, so just into lockdown last year, he recommended treatment. The largest tumour was 8 cm.”

Naomi says that going through treatment in a COVID-19 world was a double-edged sword. On the one hand, it was scary as she was immunocompromised during a pandemic. However, it was also protective, as she was not out in the community while at risk.

Thankfully, Naomi is now in clinical remission.

When asked about the support that she received during her cancer journey, Naomi says that much-needed information managed to come at the right time, and she is very grateful for the support from LBC.

“I received a link to a new fact sheet that had come out through LBC, and it was titled ‘Chemo Brain’. It was just like reading a tick list.”

When someone is diagnosed with cancer, it is not uncommon for people to want to share their knowledge and thoughts in the hope they are helping. This was no different for Naomi, but she shared a great takeaway from her journey that is worth noting,

“Many years ago, the first midwife that we had, had given me some advice that’s been useful in lots of ways in life. She said, ‘taste everything but only swallow what’s good for you.’”