Lotomau

I can overcome this

“Lotomau is my name, or Lotto for short. Not that I’ve ever won the lottery, though,” Lotto laughs heartily. “I’m from Samoa, and I used to work in the telecom industry.”

“When I was 15, I fell from a mango tree in Samoa. Since then, I’ve had problems with my hip. I needed to have a hip replacement in Samoa in 1988.”

Three years later, in 1991, Lotto moved to New Zealand. When he arrived here, he looked for a job in the telecom industry. “But New Zealand’s telecoms were in the process of becoming privatised and it was hard to find work. So I got a job in the wiring industry instead… but then I was laid off after seven months.” Struggling to find ways to make ends meet and provide for his wife and five children, Lotto looked at other options. He decided to start his own taxi business. He used the money from his redundancy package to buy a taxi, began driving and made a decent living. He eventually moved on to driving buses in 2006, after his kids had grown up.

On the surface, things were finally looking up for Lotto. “But I still had a hip problem. I was limping. That whole time, I was still dealing with a sore hip. I ended up going to have a checkup on it, because the joint I had from my operation in Samoa had started to wear out.”

Lotto remembers vividly the day that everything changed. “It was in 2016, and I was driving the bus – and when I started work, I was sharp as – but later that morning, I bent down to grab a coin that had fallen on the bus floor. And I felt a snap in my back. It was really painful.” Lotto tried to keep going and finish his shift – but by lunchtime, he couldn’t take it anymore. His back was so sore he couldn’t drive. He went to his doctor, who gave him painkillers and sent him home. But by that night, he couldn’t even walk. The next morning, he was in so much pain that even getting out of bed seemed impossible. “I reached out of my bed and shook the shelf with my phone on it, so it would fall for me to pick up, and I rang 111. An ambulance came and took me to the hospital.”

After three weeks of tests, the hospital doctors finally diagnosed Lotto with myeloma. “I remember the doctors telling me about the treatment, but I told them that I needed some time to think about it. I was crying so much, I felt like that was the end of the world for me.”

“When you hear the word ‘cancer’, you just think you’re not going to live anymore… I didn’t know what to do with myself. But I agreed to go with the treatment in the end.”

Lotto was put on radiation treatment for a week and a half. This was followed by chemotherapy which was injected into his stomach. Finally, he was put on the waiting list to receive a stem cell transplant – which he received in 2016. “I was really weak, and my hair started to fall out. My teeth fell out, too. I have hardly any left now. And when I was going through the blood regeneration process, I couldn’t eat. I lost about 14kg. I couldn’t work anymore, and I had to learn how to walk again, too.”

It was hard for Lotto, who was used to working hard and keeping himself busy with projects. “I’m not the type of person who likes to just sit around and do nothing. I’m always outside looking for things to do – painting, gardening; doing what needs to be done.”

Despite the challenges of treatment, Lotto appreciates the people who looked after him in hospital. “Everybody, in every department – radiation, chemo – the staff were all awesome. I have no complaints!” Thankfully he also had support from people like Tim, from LBC, who visited Lotto at home and gave him encouragement throughout his journey. Lotto knew Tim was always available for a chat if he needed it. But Lotto is most grateful for his family.

“My wife dropped everything when she found out about my diagnosis. On the morning I first went to hospital – my son came home and I wasn’t there, and hadn’t left a message for him. He rang around every single hospital in Auckland until he found me.”

Lotto hasn’t been dealt the easiest cards in life. But he has a loving family, a roof over his head and a wife that has never left his side. Just as importantly, Lotto has hope he can get back to living the life he wants. “I think I can overcome this.”

Fast Facts: Myeloma

  • Myeloma is a cancer of the plasma cells, which become abnormal and multiply, causing damage in the body – most commonly in the bone marrow and different bones
  • Approximately 430 New Zealanders are diagnosed with myeloma each year
  • The majority are over the age of 40 years old and it is more common in men.

Barry

The one that got me

“We had a number of close calls. One was the Pike River Mine tragedy. I was supposed to be down the mine that Friday; the day it blew up, but it had been rescheduled. We made it through both Christchurch earthquakes. And finally, myeloma. That was the one that got me.”

Barry has lived in Christchurch for the past 36 years, along with his wife, Sandra, and their three adult children. He found out he had blood cancer in 2011 – but had been suffering from symptoms for three years before that. “I’d had a sore back. Carrying a 6kg tool bag and fire extinguishers every day was becoming difficult. So my work sent me to a physio through ACC. I had a blood test done with a new doctor, which didn’t show anything, then another blood test with our original family doctor, and… I knew within 24 hours.”

“We both thought it was some kind of cancer – but no one wanted to say it out loud,” Sandra says. “Neither of us had heard of multiple myeloma.”

Barry was initially given just days or weeks left to live. He had to start treatment straight away. “We just kept going with more and more medication and treatment. Everything was thrown at him.” Everything, including a successful stem cell transplant, later that year. Eventually Barry made it through 2011.

Sandra took on the role of his nurse at home, and kept Barry safe from sicknesses while he was at his most vulnerable. “I couldn’t even get a cold, so Sandra kept me in absolute lockdown.” Sandra jokes, “I needed him to get through this, because the lawnmower hates me!” It’s clear that staying positive and having a good sense of humour is important to the couple.

“He was OK for a couple of years before it started to rear its head again. That’s when they offered him the first clinical trial… So, we signed the paper and hoped for the best.”

The couple are grateful to the hospital staff. “They were always amazing – particularly his specialist.” They’re also thankful for the support they received from LBC. “The team down here reached out to us. Kate and Helen are great,” says Barry, “We attend most of their LBC support meetings. And, back in 2019, we went up to Auckland to speak at the Firefighter Sky Tower Challenge.”

Barry is now in remission after another clinical trial last year. “The trials are very full on. But there are no complaints from me if it works, or will help someone else in the future.”

“A few weeks ago I saw my haematologist in person for the first time in six months, and he couldn’t believe it. He opened the door and said, ‘Look at you! You’d never know anything was wrong.’”

As hard as the journey has been, the couple has managed to make the most out of life, even fitting in the Otago Rail Trail with a group of friends between remissions and treatments. Barry also enjoys spending time at the Rolleston Men’s Shed, where they call him the Energiser Bunny.

Sandra says, “I can’t see him slowing down any time soon. He’s a great number eight wire man!”

 

Craig

Warrant of fitness

“At 35 I started having a yearly ‘warrant of fitness’ – getting my body checked out. I was pretty rough on it!”

Craig laughs. “At 38, my doctor did the usual thing, had my blood test done. A few days later, he said that we need to have a chat.”

“At first he said, ‘Unfortunately, you might have leukaemia (not myeloma). He was a good doctor, but he had a funny way of approaching things. He just blurted it out.”

“I sat there, thinking. Oh f***. Excuse my French, but what is this all about?”

Craig was referred to a haematologist. “I didn’t even know what a haematologist was! But I went to the hospital and had an excruciating bone marrow biopsy.”

“The doctor said, ‘This might hurt, yell if you wish’, and my wife Janet said my language was very colourful!”

A week later, the doctor told Craig that he had Monoclonal gammopathy of undetermined significance (MGUS) – which he explained looked like the beginning stages of myeloma.

“It was like a pimple. It could either grow or it could go away – unfortunately mine became myeloma.” At 49, Craig needed a bone marrow transplant. He searched amongst all of the people in his life, and unfortunately no one was a match, so he used his own bone marrow.

“Even though I was numb, the doctor used this sharp bore needle through the muscle to extract blood. I jumped when I saw it, and then she jumped too, because I scared her as well!” Craig cracks up, “And then I was on some intense chemo.”

“Everything tasted metallic. I was a bit overweight, so when I lost 10kgs – I thought that was great!” Craig says, grinning. “I went completely bald and I’d stand in front of the mirror, and think – it’s not so bad, being bald, actually.”

Having picked up a bug, Craig spent Christmas day in hospital. “I ate hospital food, while Janet sat there next to me, enjoying crayfish! So I was like, oh what a great Christmas this is.” He says, laughing.

Craig’s happy-go-lucky attitude played a part in his recovery – as well as the support from LBC. “We went to the support groups in Tauranga, Auckland and Sean’s online Zoom meetings. It’s fantastic what LBC do for patients like us.”

And, of course there is his wife Janet. “Janet gets involved when I need help. She thinks I’m the biggest pain in the a** when I’m on Dexamethasone! It’s such an intense drug, and it makes me grumpy, and I don’t sleep well on it. But, I know this is hard for her as well.”

However, Craig is optimistic. After his bone marrow transplant, he was OK for about 16 months. At 52, he retired after working and traveling through his treatments. Now at 62, he’s been on a number of funded drug trials which he estimates has given him over 9 ‘extra’ years of life that he may not have had, otherwise.

“Alongside all the other drugs, I’ve had thalidomide, lenolidimide and pomalide. I’ve had ALL the ‘mides’ – I don’t think there’s anything left! I was a bit of a guinea pig. But that didn’t bother me, because it was about the future of the disease and helping patients after me. Remember – keep positive, the brain is a strong tool.”

Fast Facts: MGUS

  • MGUS is a non-cancerous condition that has a small risk of developing into myeloma (only 1% of those with MGUS develop myeloma every year)
  • It does not tend to cause symptoms and is usually not treated, but it is monitored due to the small risk of developing myeloma
  • Average age of diagnosis is 70

Annie

Life without expectancy

“They said, ‘your bones look funny, they’ve got holes, like they’re motheaten.”

And I thought, ‘that’s weird.’ But I didn’t care, I was full of fentanyl by then!” Annie laughs.

It was September 2021 and Annie was in hospital after falling onto her bed. Despite the soft surface, she had broken her pelvis. ED doctors were working hard to understand what had happened.

“A couple of weeks later, still in Masterton Hospital, practicing walking, and after many tests including a trip to Lower Hutt for an MRI, doctors asked for a meeting with myself and my two sons. We were told, gently, that I have multiple myeloma.”

“There’s nothing like that heart-stopping moment. Nothing in life ever prepared me for that.”

After the confirmed diagnosis Annie and her sons FaceTimed her daughter in Australia. “We tried to break the news to her as gently as possible – she only knew I had a broken pelvis. It broke my heart to tell her this when she was so far away.”

Annie was then transferred by ambulance to Wellington Hospital where her chemotherapy journey would be mapped out and multiple myeloma explained in depth. She would, after being released from hospital, end up travelling from Featherston to Wellington Hospital for weekly chemo, then eventually weekly to Masterton Hospital.

Once in Wellington Hospital Annie and her children had a family conference video call with one of the haematologists and Kelly (the wonderful myeloma Nurse Specialist) to help them wrap their heads around Annie’s sudden diagnosis.

“The first thing this doctor said was, ‘As far as life expectancy goes, you’ve got around 10-13 years.’ I never asked that, didn’t want to know that, and my children didn’t want to know. My plea to doctors is, please make sure that your patients want to know this before you tell them.”

Unintentionally, that short sentence caused a lot of pain for Annie’s daughter. “Your life expectancy could be 1 hour, 1 day… it could be 50 years, whether you have cancer or not.

What that doctor said really got to her,” Annie says sadly, “and she got stuck on that.” Nervously, the family pushed on with Annie’s treatment. She had 20 weeks of non-stop chemo, ending mid-February 2022. “I was meant to have a stem cell transplant in March 2022 but Covid changed that. So I went back for another 8 weeks of chemo and finally had the transplant on June 1st 2022.”

Annie was so terrified by all she read and heard about stem cell transplants that she seriously considered not going through with it. “I was dreading it, I was certain I would die.”

“I sailed through the whole thing. Since the transplant I’ve been OK – which is astounding, apparently. I got to come home after 10 days – instead of the predicted 3-4 weeks in hospital.”

Despite the good news Annie’s daughter was still anxious.

“After the transplant her first question was, ‘What’s your life expectancy now Mum?’ And I said, ‘Same as yours Lucy. Exactly the same as yours.’ ‘What do you mean?’, she said.

‘Well… there’s no specific amount of life you can expect, that you know you’ve got. But I’m here right now.”  It was a difficult conversation – just one of many hard conversations that Annie needed to have – and she found a safe space for those discussions with Nicki, and later Sally, from LBC.

“I got in touch with Nicki first. My son Shaun went to the LBC website and read up on myeloma. He then sent a video of a myeloma survivor that he found on the website to myself and my other son James. It gave us hope.”

“I’m a great believer in support groups, and I’ve enjoyed Sally’s groups. It’s nice to be able to say things that I can’t say to my children, because I want to protect them.”

Annie’s big heart isn’t only limited to her children. While recovering in hospital, instead of worrying about herself, she came up with an amazing plan to help others.

“I’ve always loved sewing dresses for little girls. One day, I was wondering where I would send the dresses to my daughter-in-law Jane Keig. Jane had the Defence Force contacts to put us in touch with the Timorese ambassador Her Excellency Ms Felicidade Guterres. We visited the embassy and got approval from Her Excellency to make dresses for the little girls of Timor-Leste. Stitch 4 Kids NZ was born!”

With a lot of talking to people, newspaper articles and goodwill they were donated tons of fabric from around Wairarapa. Several women locally and around Aotearoa joined in, making dresses for girls from 1-14 years old. Annie had created something special during one of the hardest times in her own personal life. But, this isn’t unusual; Annie really is this tenacious.

“My doctor says the cancer will come back – it’s not curable but treatable – but I’m saying not for at least 15 years. I’ve got a friend in Auckland who has myeloma and she’s 8 years out from her transplant, and she’s perfectly ok.”

“Get on with life and enjoy it, that’s what I say. Looking back from the great old age of 66, it goes fast. I’ve had a wonderful life, and this experience, whilst it’s been horrible and heart-breaking, it’s not the be-all and end-all of who I am.”

“I’ve been stubborn and determined since I was a little girl: and I don’t plan on changing. I’m glad I’ve got that stubborn streak. There’s always going to be good and bad, but it’s what you do with your life that matters, eh?”

Fast Facts: Myeloma

  • Approximately 430 New Zealanders are diagnosed each year
  • The majority are over 40 years of age and it is more common in males
  • Myeloma affects the plasma cells, which grow uncontrollably, causing damage in the body, most commonly in the bone marrow and different bones.

 

Toby

Everything just felt hollow

“My mum would drive me to my hospital appointments, and we’d go past the university. I’d see other people in their 20s, studying and hanging out. Meanwhile, I was here fighting for my life.”

In 2020, at age 22, Massey University student Toby began feeling unwell.

“I was really breathless, weak and throwing up a lot. I turned up at hospital to find out that I was running low on blood counts, and later learned that I had a plasmacytoma.”

The plasmacytoma required all kinds of tests, biopsies and finally, radiation. Afterwards, Toby felt well for a while, until three months later, when he had a PET scan and new tumours had shown up.

More surgeries and biopsies were booked, and that’s when it was confirmed that Toby had multiple myeloma.

“There was this song playing when we showed up at the hospital that I really like; Black Magic Woman by Santana. So I was thinking in my head, oh this will be a good time! But it wasn’t.”

“My doctor gave us the news, and…everything just felt really hollow. It was a big shock.”

By now, Toby had put his studies on hold, left his flat and stopped working. He moved back home to Wellington where his parents could support him through treatment.

“Every single doctor visit, my mum was in the room writing things down, and that really helped me out. She’d pick up on something that I missed, or vice versa.”

“It’s been a dream. As much as I feel like I shouldn’t be at home at my age, I think it’s been one of the best decisions.”

And Toby was also supported by Nicki from LBC.

“She was awesome. She met me one day at hospital and explained what LBC does. She pointed me to some of the online resources about blood cancer. As a student, I like to do my research on stuff, so I appreciated that.”

“She also offered me a TV card so I could watch TV in my room without having to pay for it.”

Toby has recovered well, and as of August 2022, he is tumour free. He’s grateful to be healthy, and back on track with his studies.

He’s back doing what he loved before – getting outdoors, going for walks and cycling. He’s also back studying, and has almost finished his degree.

“It’s just about changing your mindset.”

 

Fast Facts: Plasmacytoma

  • Plasmacytoma is a type of cancer that begins in plasma cells (white blood cells that produce antibodies)
  • When only one lesion is found it is called a plasmacytoma but may turn into multiple myeloma, and is often thought of as early multiple myeloma.

Peter

I can rebuild myself

Twenty years ago, Peter was involved in a serious car accident that could have ended his life. He remembers being trapped in his car, his leg at a crazy angle. His femur in his left leg had been smashed.

But Peter survived that car crash, and while it took some time – he recovered well, apart from some lasting issues with the muscles in one leg. He knew that at some point he would need surgery.

This is why, in July 2020, when Peter was called to schedule a meeting with his doctor after a series of blood tests – Peter thought that he was finally getting the surgery he needed on his leg.

“And that’s why I was alone when I drove up for that appointment. I didn’t have my wife with me because I didn’t think anything was wrong,” says Peter.

But there was something wrong. Peter knew that he had hip and back issues. He was often in pain, which he had become used to. But he was not expecting to be told that he had myeloma.

“It’s hard to put into words how it felt. But I can tell you one thing – I do this crossword every day in my local paper. Every single day. I brought it with me to pass time during my appointment. Well…”

Peter turns to his side and stares at the floor. His voice goes a little wobbly as he says,

“The only time I’ve not been able to do the puzzle was that day.”

Suddenly, his life was turned upside down and he entered a new world of chemotherapy, doctor appointments, treatments and even a stem cell transplant.

His wife and family joined him at his side, as well as Natasha from LBC.

“At some point, I don’t remember when, but Natasha visited me in hospital, just to checkin and see how I was doing. And I really appreciated that. I went to her support meetings.”

After his transplant, Peter started to recover slowly. He was told that regaining his mobility would be a long and gradual process. “So I set myself goals, and I said, right – I’m gonna do this. I never wanted to climb Mount Everest or swim across the Cook Strait. I just wanted to do the things I enjoy.”

One of those things that he enjoys is lawn bowls. “I told Natasha this funny story about when I started back at the club and I met one of the new guys who looked like a good player. So I contacted him, and it turned out that he had been living with leukaemia for years.”

“Then we found a third guy to join us, and I said to him – ‘Hey, this is like a rugby scrum. We’re the two props – one’s got leukaemia, one’s got myeloma – so as the hooker in the middle, you’ve got to keep us together!’”

“And he looked at me and said he’s going through treatment for bowel cancer.”

Peter laughs as he says, “So it was the three of us old cancer survivors! We played together, and you know what, we almost won the club champs.”

Peter has learned to be kinder to himself this time around. “You’ve got expectations about how you perform, and when something like this happens, it shakes you about a bit. And you hope to bounce back. But you’re also getting older.”

“Back when I was a young rugby player, the local newspaper picked up this photo of me at a game and called me the hairiest rugby player in New Zealand.”

“So when I had my treatment, my hair started falling out. And one of the people at the hospital helped me to cut my hair. I said to this woman – at one point, I was one of the hairiest men in New Zealand. And look at the remnants on the floor now!”

This was not the only memory that has come back full circle. After the car accident in 2000, Peter’s attitude toward life changed.

“I was determined that I would go to this conference in Christchurch. And my boss knew how important it was to me – it was my goal. I had to use a crutch at the airport, and needed to be wheel-chaired to my flights, but I got there.”

And similarly to his blood cancer journey, Peter is again determined to get his energy back.

“One of my daughters noticed that I had improved recently, and it wasn’t until I thought about it that I thought, yes I have! It’s the small things – the way you roll in bed, the way you might reach out for something. I was quite limited back then.”

“But, I’ve been to this movie before – I’ve had to rebuild myself in the past and I’m doing it again now. I know I can do it.”

 

Fast Facts: Multiple Myeloma

  • Around 450 New Zealanders are diagnosed with multiple myeloma each year
  • In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts
  • Fractured bones are a major problem in people with myeloma.

Hine

From hōhā to kaha

Hurihia tō aroaro ki te rā tukuna tō ātārangi kia taka ki muri ki a koe 
Turn your face to the sun and the shadows fall behind you 

“I’m learning gratitude; a gratefulness for life itself. That’s been a hard one for me.” 

Hine Wikiriwhi is a 69-year-old, proud Māori wahine from Auckland, with myeloma. Her iwi is Tuhourangi on her father’s side, and Tainui on her mother’s. 

She loves to sing, she is passionate about te ao Māori, and she adores her ‘fur babies’. Talking to her feels like having a kōrero with your kuia, your grandma. 

But, while she is chatty, warm and friendly – vulnerability can be difficult for her. 

“I have a Tainui cousin, Mere. One day, she looked at me and she said, ‘you’d be pretty good at hiding things’. I think I cover up a bit, that’s the trouble.” 

Hine covers up so much, in fact, that she kept her myeloma diagnosis from her workplace and her family for over a year. “See, I learnt to put on a mask early in life. The outside looked OK, but the inside wasn’t good.” 

Hine grew up with a dad who suffered from PTSD. He served in WWII as part of the 28th Māori Battalion. It was through her father that Hine learned, as a child, that you deal with hard stuff in life by ‘getting on with it’. 

This is how she approached her blood cancer as an adult. “I had been leaving work early on Fridays because I needed to report to North Shore Hospital. But, I was hōhā; I was annoyed. I complained to my doctor; ‘I have to keep working to pay the bills.’” 

While it was tough, there were parts of her journey that she appreciated. “I’m grateful for the public health system, so that I could have my stem cell transplant. It gave me at least five good years.” 

She had help from her partner Kennedy, and she attended LBC support groups too. “We did a Christmas Zoom for patients recently. It was nice. I draw inspiration and courage from them – the older ladies there.” 

Hine was also grateful for her doctor, who helped her stay level-headed, focussed and optimistic, even though she is hesitant to know too much about her blood cancer. “I just have to trust it. I don’t usually want to know about my lightchains, or how high-up they are.” 

“But, I know I have this condition.” Hine says this with clarity. 

“I knew that I’d have to go to hospital on the Friday before Christmas. And, I knew that it would make it difficult to eat food on Christmas Day, because I wouldn’t have my taste…and I don’t know how long the treatment is going for, exactly. But I think my blood test results are OK.” 

Looking back, Hine knows that she could have approached her diagnosis differently. But she is happy with her life, and she is grateful for it. While her myeloma doesn’t define who she is, it has taught her a lot about resilience and kaha; strength. 

“I read this quote once about how all organisms are made of four essential things – carbon, oxygen, hydrogen and nitrogen. Dust to dust – you know, that’s what we’re made of and where we come from. For us Māori, that breath of life – it’s God-given.” 

“For me, each breath is precious.” 

Fast Facts: Myeloma 

  • Affects around 400 New Zealanders each year and is slightly more common in men 
  • Majority of people diagnosed are aged over 50 years, with around 2% under 40 years 
  • It is a cancer of the plasma cells. 

Corley

Every journey is different

“I’ve got ‘myeloma’ and I’ve never even heard of it before!” That was Corley Steunenberg’s initial reaction when she was diagnosed with myeloma. 

The warning signs started appearing in December 2019. “It started with a very sore back. It got so bad that on Christmas Eve, I said to my husband – I can’t get through Christmas without getting some sort of treatment.” 

After visiting multiple doctors and getting nowhere, she was finally diagnosed with lambda light-chain myeloma in January 2020. She was shocked. “I was thinking, ‘How long have I got to live?’ It was incredibly stressful.” 

“Thankfully it wasn’t the type that has a shortened life expectancy.” 

Then, before she could even catch her breath, she began treatment in February and she was placed in a clinical trial programme. Because of the fractures in her back, she had to stay in hospital longer than usual, which also meant that her recovery would take longer. 

“I still had trouble doing anything, and that’s why they kept me in hospital for so long. I couldn’t sit up or get out of bed. I couldn’t shower or toilet by myself.” 

When Corley was finally sent home, she could barely walk. She had to learn again, one step at a time. “I had a hospital bed, a walker, and a wheelchair.” She also had a very supportive husband who helped care for her. 

Time passed slowly during her recovery, and her mind would often drift toward dark places. “I sometimes wondered if I could have avoided the fractures.”  

What could she have done differently? What if her doctor had caught it sooner? “But, those types of questions are unhelpful to ask yourself after you’ve already been diagnosed.” 

Gradually, her condition improved and she was able to get more of her independence back. “I can walk without aids now, but if I do a long walk, I use my husband’s walking pole for stability. It makes you feel a bit more athletic having a walking pole instead of crutches!” 

Today, she still gets back pain now and then, but she knows it’s not from the fractures. She also knows that she can contact LBC Support Services Coordinator Natasha for support, if she needs it. 

Corley met Natasha early in her treatment at Middlemore, after talking to a man who had myeloma for six and a half years, and his wife – who passed on Natasha’s details. 

“Natasha’s awesome. She does a fantastic job. She tries to connect people with ‘like’ issues.” 

“Everyone’s myeloma seems to be different.” Some people experience fractures almost immediately. Other people are diagnosed well before the obvious signs of myeloma even show themselves. 

“There are a lot of stories out there, and there are a lot of people who have had a much harder time than I have.” And, while there are many stories of people with myeloma and different experiences to learn from – one thing she knows for certain, is that positivity is important. 

“The stories I wanted to read were of people who went through the journey and things started to look better. There is a lot of negativity among people living with cancer, and that is not supportive. It makes you feel worse.” 

What made Corley feel optimistic, was the LBC Support Group she attended regularly. “You have the people who belong to these groups, who are positive and want to help people and talk about their journeys.” 

She was moved by the kindness and support of the couple who introduced her to Natasha. 

“I thought it was awesome that even after six years, the couple were still going to LBC support groups to encourage other people.” 

For many people, living with a cancer like myeloma can be a lonely and isolating experience, and Corley is aware of how different it could have been, had she not had her husband. “I can’t imagine going through what I went through on my own. It’s important to have a supportive network around you.” 

Corley’s support network meant that she had the strength to get through Christmas with severe back pain, learn how to walk again, and embrace positivity during a time of uncertainty. 

“Don’t let negative people pull you down. Focus on the stories of hope, and remember everyone’s journey is different.” 

Fast Facts: Light-chain myeloma (LCMM)

  • A less frequent type of multiple myeloma (MM) 
  • It can be more aggressive than other forms of myeloma 
  • It is characterized by the inability of the malignant plasma cells to produce heavy chains, resulting in the exclusive production of light chains. 

Nichola

Nichola Oakenfull’s journey with blood cancer started like so many others, with seemingly unrelated and vague symptoms. For about two years, she struggled to piece together the medical breadcrumbs that would lead her to a myeloma diagnosis. She experienced extreme fatigue, headaches, shortness of breath, pins and needles in her hand, and chest and back pain throughout her path to an answer. She had been in touch with her GP, who didn’t dismiss her symptoms and sent her to a couple of specialists, but she was told she was just a busy 40-year-old mum. While no news is usually is good news, Nichola knew something was wrong with her body.

“I thought that I was going crazy and that I must be a hypochondriac. I had all these things that you can’t make up. But they couldn’t find anything, so I had been seeing a psychologist to try and make myself stop thinking that I had cancer.”

It was after a back injury in October 2019 that Nichola’s back pain got much worse.

“I couldn’t move for a couple of days and then went to physio. But with physiotherapy, it got better really quickly, it improved, but then plateaued.”

After family illness forced Nichola to take time off work and travel to Hawke’s Bay, she had to stop going to physiotherapy.

“Then, in March last year, I tried running to pick up my little boy from athletics, and I couldn’t run. It hurt too much. That was the Monday, and then on Thursday, I was at the supermarket, and I sneezed, and I couldn’t move.”

Once she had healed enough to go to physio, the therapist thought she had a slipped disc. Again, the physiotherapy helped, but two weeks later, the country went into lockdown.

“My haematologist said that she would have been helping to relax all the tense muscles during our in-person sessions by massaging them. So then during the lockdown, when I wasn’t getting that, the pain got progressively worse.”

After the lockdown, the physio asked Nichola to get an x-ray of her back. This imaging showed that her back was broken, but there was a suggestion it was an old fracture. Simultaneously, she went to visit her GP for a long-lasting sore throat.

“I asked my GP to clear me to go to physio and asked her about my back. She said that she disagreed the fracture was old. ‘A 41-year-old doesn’t get a compression fracture for no reason.’”

Her GP ended up ordering more tests, which included an ultrasound due to extreme abdominal pain.

“I had an ultrasound and blood test on that Friday, then I saw on my “Manage my Health” page on Sunday that the ultrasound had come back clear so I thought I was okay. But then, on the following Monday morning, my GP’s nurse called first thing. She asked if I could go for another blood test that morning.”

Later that day, her GP called her in and told her that she needed to see a haematologist.

“I saw the haematologist the next day. He said that there was a chance that my broken back showed up as inflammation, but he thought it was more likely than not Multiple Myeloma. Two weeks later, after an MRI and bone marrow biopsy, I was diagnosed. I’m so grateful that my GP took all of my symptoms seriously, which led to my diagnosis.”

Nichola says that she has had many touchpoints with LBC and values the Wellington team’s support of her and her family. She has participated in various services, including the Ladies Zoom support group, the Wellington Myeloma and haematological support groups, Kids’ Club for her now seven-year-old son. She was also grateful for the webinar series put on last year.

“The webinars were great because there was one on managing side effects of treatment. That was literally like my first or second week of chemo, and was really useful.”

Today, Nichola holds hope in the future of myeloma treatment, including clinical trials.

“The money that LBC gives to research, like the Malaghan Institute’s CAR T Cell trial, is significant. While that is for lymphoma patients, eventually, we may have Myeloma CAR T Cell trials or other similar treatments. I may not be gaining anything from it now, but maybe I might someday.”

Steve

Taranaki resident, Steve Roguski’s cancer journey began in November 2013 with a commonplace symptom.

“I had back pain, and it turns out that I had myeloma.”

While they sorted his back out, Steve says that it took around 20 days to diagnose him fully. He had surgery on his back, including adding screws to hold it back together. By February 2014, he was on his way to Palmerston North for radiation.

“I had to wear a body brace while the screws, and all that, healed for around three months.”

Steve’s blood cancer story does not stop there, however.

“In 2017, I got a sore throat; they did a PET scan. Then I found out that I had lymphoma AND I learned the myeloma had started to spread.”

He was being treated in Whangarei, where he was living at the time. The first step, after learning this news, was to attack the lymphoma.

“They found out that it was double-hit lymphoma, so I had to go to Auckland for treatment. I did seven cycles, I think, and then I had a stem cell transplant. After that, I started treatment for multiple myeloma.”

From there, he had two years of treatment. The treatment for his lymphoma was quite aggressive.

“You are on the drip for five days and nights. I lost all my hair; I lost my fingernails and toenails, but they did all grow back.”

Steve says that he was first connected to LBC when he was in Auckland Hospital for treatment. He says that Tim Maifeleni’s support sticks out in his mind.

“It’s just knowing that he was there, which helped.”

Sometimes, the most important gift you can give someone is showing that you care. This is especially true for caregivers when they are taking care of their sick loved ones. Steve’s wife, Joy, supported him through the process, and he recognizes that it must have been difficult for her.

“It must be hard on the carer to see how sick you are. Their entire life gets put on hold.”

Today, Steve is done with treatment and says that his outlook on life is positive.

“I feel that you are better off to be happy as opposed to being sad. I leave the treatment and that for the doctors, that’s their job to do, and my job is to be happy.”