Coleman

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.

Marion

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.

 

Tai

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 

Wendy

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. 

Ross

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

Mile

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.”

Celia

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

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.’”

Neil

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Laura

Laura Bonney was eight weeks into her nursing career when she was diagnosed with blood cancer.

Laura’s path to a diagnosis started in August of 2017 when she couldn’t shake a particular symptom:

“I had just had itchy skin for months and months. I had been treated for skin infections; he treated me for scabies. He was like I don’t know what is going on, but you know your body.”

Her GP ran tests, but nothing caused the alarm bells to sound for her doctors until she went back in December with lumps in the front of her neck.

After running various tests, with nothing coming back abnormal – Laura’s doctor referred her to a surgeon in January for further biopsies.

“By the time I actually got an appointment with the surgeon, it was the end of February. It was two weeks from the time I saw him to when he diagnosed me with Hodgkin’s Lymphoma.”

When asked about her diagnosis, Laura admits it was scary but chose to look at her cancer journey as a positive force in her life. She used the time to reflect and ask herself some difficult questions. The one that sticks out for her was the simple, yet challenging question;

“If this was my time, would I be happy?”

That is a sobering thought for most people – but it is the reality that cancer patients face every day.

Fortunately, Laura responded well to chemotherapy, is in remission, and completed treatment in September 2019.

When asked about Leukaemia and Blood Cancer New Zealand (LBC), Laura describes it as a “family”.

“The youth and young adults group has really brought together a group of people that I can chat to who have dealt with something similar. They might have a different diagnosis or might still be going through treatment but we’ve all been there. I still go to the youth events, and I think that really became my cancer community.”

Laura says that when her Support Services Coordinator, Rochelle Mills, mentioned the educational sessions that LBC offer, she jumped at the opportunity.  She highlights one in particular that addressed the process of getting in contact with Work and Income New Zealand (WINZ) to apply for a disability benefit.

“I was only working part-time, and I found it so difficult to navigate. LBC had this education session where they told me to speak to this person who is their liaison with WINZ, and that they would talk to me about what I was eligible for and what LBC could help me with. I was like, oh, amazing!”

It is support like this that is at the heart of what LBC do.

“You don’t know what’s around the corner. I think contributing to LBC is so important to me now because by doing that, you are helping build a community for people like me who felt so lost and so alone.”