Patient Story Type: Myeloma

Every day is different

Sixty-four-year-old George is an engineer who lives in Auckland with his wife. “I have two daughters,” he tells me. “I’m originally from Sri Lanka, but I’ve been living here for 26 years.”

George has had an exceptional life. He’s travelled all over the world for work and has been heavily involved in community work. “I was President of the New Zealand Tamil Society – that’s a Sri Lankan group – and was involved in the Tamil community for around 10 years.” He’s worked with refugees and migrants and is now the Director of International Projects at his local Rotary Club, supporting healthcare and education in Vanuatu. He’s been awarded the New Zealand Order of Merit to recognise his contributions.

“That’s my background,” George says. “That was before I was diagnosed with cancer.”

Every year, George would have a routine blood test. “My GP usually asked me to do the blood test every January, but last year I was a little bit lazy and thought, ‘I don’t have anything wrong with me – I don’t even take Panadol!’ So, I was postponing and postponing it until the doctor called me, and then I went and got the blood test on the 28th of March.”

That date has stuck in George’s mind, because the very next day, he received a phone call while he was at work. “The doctor called me, and he said I have multiple myeloma.”

George says he went straight into planning mode, thinking about what needed to be done. “I didn’t get scared – I immediately thought, whether or not we have myeloma, there’s always a possibility of dying, so why should I worry about that? I had to go and write a to-do list!”

He thinks the diagnosis was harder on his family. “It was very hard for my daughters. Initially, they were scared, and they couldn’t accept it.”

After more tests and some checks to make sure he was fit for treatment, George began 16 weeks of chemotherapy. “Then, during that period, they told me they’re going to do a stem cell transplant.”

In August, he had six days of injections to boost the stem cells in his bone marrow and move them into his bloodstream, and then they were harvested. “Fortunately, they were able to capture enough for two transfers.”

“Then in October, they admitted me to the hospital and gave me high-dose chemotherapy to destroy all my bone marrow. The next day, they put the stem cells into my body. During that period, I didn’t have any immunity, so I was given a separate room. They looked after me very well in the hospital – the doctors, nurses, everyone.”

While he was in the hospital, George was introduced to Tim, a Support Services Coordinator from LBC. Tim kept in contact with George over the phone and would visit him in the hospital to offer support.

In the weeks after George’s transplant, he struggled with terrible side effects including a high fever and diarrhoea. After 28 long days, he was able to return home. He took another four weeks off work while he regained his strength.

Then, in February, he was back in hospital for a second transplant – and went through the whole process all over again. “This time it was bad, because my body was already weak. I was in ICU for four days because my blood pressure was down. Everything was different. My diarrhoea was much worse.”

Again, after 28 days, he was allowed to go home. “I was so tired. I couldn’t even walk 50 metres. For two weeks I stayed in bed, and then I slowly started walking about 50 metres with a hockey stick, and slowly, slowly, slowly improving. This time, I had to take eight weeks of rest.”

George is now on maintenance therapy. He was part of a clinical trial for a new treatment, but the trial was cancelled, so he now takes lenalidomide.

After working from home for most of the year, George recently started going to the office three days a week. “That’s been okay. It’s not the same every day – sometimes I’m very tired.”

George and his wife have regularly attended LBC’s support groups. “When we go there, we meet people who have already had multiple myeloma, so we can talk and ask them things. We have become friendly with one or two people. One of the guys is also from Sri Lanka, and he’s now 20 years on from his stem cell transplant – so I used to call him and get advice.”

George says he is now feeling well – both mentally and physically. Life is getting back to normal, although some days are better than others. “But everyone says that’s how it is – every day is different.”

Earlier this year, George was extremely proud of his daughter when she honoured her dad’s journey by climbing the Sky Tower to raise money for LBC. “She wanted to do it for me,” he beams. George helped her fundraise through social media and was there to support her on the day. It’s clear that even in the midst of his own struggles, this is what makes George tick – giving back and making a difference in his community.

A 17-year journey

Sue has been a nurse for as long as she can remember. She has two grown-up children and one grandchild, who all live in Christchurch. Sue moved from Christchurch to Auckland following the earthquakes and eventually settled in Whanganui, where she now lives with her wife, Jo.

Sue has had a successful career, rising through the ranks in the healthcare sector. She’s managed three retirement villages, worked as a regional manager for a home care company, and now works in a senior nursing leadership role. For all intents and purposes, she is active, fit and well – except that Sue has also been living with myeloma for the past 17 years.

“It was an absolutely accidental finding,” she says. It was 2007, and Sue had been to the doctor because she was feeling tired. She thought she might be iron-deficient, but to make sure nothing else was going on, her GP decided to run some other tests as well.

“I had a whole myriad of tests done. With one of them, the lab came back and said, ‘Actually, we think with this reading, you should probably have this new test for serum free light chains.’ And just like that, they found it.”

Even with her nursing experience, Sue found it difficult to come to terms with a myeloma diagnosis. “I think there’s this thing when you’re told you’ve got cancer – and especially 17 years ago – where you do sort of immediately start sizing yourself up for a box.”

One thing she found particularly difficult was telling her friends and family the news. “It was devastating for them,” she says. “I just felt for them, because I couldn’t make them feel any better about it.”

It was February when Sue was first diagnosed, and she was initially told that because her myeloma had been caught early, she might not even need to start treatment that year.

“But by the middle of the year, I was on oral chemo and dexamethasone. That didn’t work, so in September I was having my first transplant at the Bone Marrow Transplant Unit in Christchurch.”

After three weeks of strict isolation and a period of recovery, Sue was able to return to work and get on with life as usual. “I got a fiveyear remission out of my first transplant, and then we had to start treating again. That was sort of year-on, year-off treatment, until my second transplant in 2018.”

Sue had three years in remission following her second transplant, and then had to look at what options were available to her. “We tried chemo again, but my body doesn’t seem to respond very well to boring old chemo! So they suggested a third transplant, which I’ve since learned is quite unusual.”

In the midst of preparing for her third transplant last year, Sue and her partner finally got married. “We eloped to Coromandel and then came back to Whanganui. We had a family and friends party here – that was on the Saturday night – and on the Monday I started the transplant process. It was the big high before the impending low, but it was lovely to have that time.”

And she’s not taking the time they’ve had for granted. “We snuck off to the Coromandel again to celebrate our first anniversary. It was lovely and much more relaxed, as last time we weren’t sure there would even be an anniversary.”

Throughout Sue’s 17-year myeloma journey, she’s been incredibly well supported by her loved ones. “I’ve got amazing friends and family – they’ve all been there when I’ve needed them… And sometimes just being there is the best thing they can do.”

Sue is also grateful for the support she’s received from LBC. She attends her local support group and has had one-to-one support from Sally, an LBC Support Services Coordinator. “Sally has been amazing. Particularly for my wife – just being around for Jo whenever she needed support.”

Sue has prepared herself for the likelihood of another relapse. “This is the cancer that keeps on giving,” she says. “So it will come back. But at the moment it’s behaving itself, and that’s good.”

“Certainly a fourth transplant is not going to be an option, I don’t think. So we’ll just have to keep an eye on what else is out there. But I’m absolutely positive there’ll be something.”

Fast facts: Multiple myeloma

• Myeloma is a form of plasma cell disorder, when plasma cells become abnormal and multiply
• The acronym CRAB is often used by doctors to describe the effect myeloma can have on different areas of the body:
  • Calcium elevation (hypercalcaemia)
  • Renal impairment and changes to kidney function
  • Anaemia, or bone marrow failure
  • Bone disease

Let’s get cracking

It was a good deed that led to a shocking discovery. In 2021, mum-of-four Kelly decided to begin donating plasma. She was in her first year of midwifery studies and had been making the trip up to Hamilton from her home in Pātūtahi for block weeks of teaching. “I thought it was the perfect opportunity to donate whilst I was up there.”

Shortly after the donation, Kelly was contacted by the New Zealand Blood Service and told that something looked unusual in the tests they had done. “They wanted to re-test. So I popped back in, did another test, and they said I should visit my GP when I got home.”

Kelly’s GP referred her to a haematologist, who gave her the life-changing news she had myeloma. “It was just surreal… I’d had absolutely no symptoms. So it was a shock. I’d never even heard of myeloma.”

Kelly’s myeloma was initially classified as smouldering. This meant that, for a while, she was able to carry on with normal life and keep an eye on it with regular blood tests. “Then we got to June of 2022 and my haematologist wasn’t happy with my blood results, and said we were going to start induction therapy. He spoke about harvesting my stem cells to do a tandem stem cell transplant.”

Her haematologist suggested that Kelly should have lenalidomide as her induction treatment. Unfortunately, lenalidomide wasn’t government-funded for this use, and it was going to cost Kelly $1000 a month to fund it herself. “They wanted me to do five months of induction. I was studying and we only had my husband’s income. But we wanted to go down the best route, and we decided to do the lenalidomide with the savings we had.”

“But then our whānau and friends got together and had a massive garage sale. My Hawkes Bay midwifery sisters organised a Hangi to raise money too. With the amount of koha that came in, we ended up with enough to fund the five months. Although, in the end, the myeloma was so aggressive that my haematologist decided to cut the last one and only do four induction treatments before my transplant.”

In addition to the amazing support from her family and friends, Kelly knew she had LBC as backup. LBC Support Services Coordinator Sean was able to relieve some financial pressure by providing petrol vouchers to help the family with travel.

Kelly had her first transplant in January, 2023, followed quickly by a second transplant in March. It’s clear from the way she talks about it that this process was incredibly challenging. “It was just mentally and physically draining.”

Kelly had put her midwifery studies on hold for a year, but by July she was ready to return. “In the second week back, I brought a beautiful baby boy earthside. And then the next day I got a call for an appointment with my haematologist.”

Not thinking the appointment was about anything serious, Kelly went into it by herself.

“I didn’t know what she wanted to talk about. And then she gave me eight weeks to live.”

Kelly doesn’t know how she made it through the rest of the appointment. All she could think about was how she’d tell her whānau that their world was going to come crashing down.

“But then my haematologist said, ‘There’s a clinical trial, and I think you’re the perfect candidate. But it takes six weeks to go through the screening process.’ And I just said, ‘Well, we’d better get cracking, because I’ve only got eight weeks!’”

In September last year Kelly finally got the go-ahead to take part in the MAGNETISMM-5 clinical trial. “Treatment was every week. I’d get a sub-cut injection in Waikato, so it was a matter of having to fly up there every week from Gisborne. That was so hard at the beginning.”

“We’re now six months into the trial and I had a bone marrow biopsy done last week. I got the preliminary results back on Thursday, and there are no myeloma cells present.”

Kelly’s not taking this for granted and she can’t wait to get on with living her life.

“I’ve actually got an interview next Monday with the Head of Midwifery to start my studies again. So I’m gonna give it one more crack. Third time lucky!”

Fast facts: Tandem stem cell transplant (SCT)

• Tandem SCT is when 2 autologous transplants are done in a row
• The goal is to deepen the treatment response and prolong disease-free survival

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.

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!”

 

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

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.

 

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.

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.

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.