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. 


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 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.”


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.”


While the world spent 2020 battling COVID-19, Dean Cole had another challenge thrown into the mix – being diagnosed with blood cancer.

Dean says that his body first tipped him off that something was wrong when he woke up with chest pains on a Sunday morning.

“I thought I had just slept quite awkwardly and I didn’t really think too much of it.  But over the period of about five days, it became really, really intense. I was at work, and I couldn’t do anything. I couldn’t breathe.”

From there, Dean went to visit his GP who saw him right away. She ran a whole bunch of tests, which included a chest x-ray and some bloodwork. His results showed that he was slightly anaemic, along with a few other ‘abnormalities’. It was then that his GP referred Dean to a haematologist who ordered a bone marrow biopsy.

“He got me back in a couple of days later and said that it was myeloma and that we needed to get me started on some treatment, quickly!”

This news came in January 2020, but his symptoms started in the middle of December 2019.

“We were on edge over Christmas. It was quite scary.”

Despite his concerns over a potential diagnosis, Dean and his wife Jasmin decided not to tell their daughters (Anika who was 6, the twins Aaliyah and Jayde at 7, and 9 year old Maea) until they were sure. Their response, when the couple did tell them, was one that we can all take to heart:

“We still see you as you.”

Dean had a stem cell transplant in July, and throughout his journey has since kept in contact with his Christchurch-based LBC Support Services Coordinator, Matthew Eby, who had made contact with him within days of his diagnosis. The couple’s four daughters also attend the LBC Kids Club, which he says they thoroughly enjoy. Dean summarised these key touch points in one word, “support”.

“A random phone call from Matt every now and then to see how I’m doing is quite heart-warming. It’s these little things, like showing you they care.”


Frances from Waitara turns 80 in December – it’s a birthday she wasn’t sure she would see. As is the case for many people, Frances’ cancer journey began with a seemingly unrelated incident, she explains: “I tripped and jarred my back and started to get back pain which didn’t get better. I went to the doctor and they gave me painkillers and said they thought it was a combination of the injury and my age.” 

Frances’ pain went on for six months and got to the point where she was practically bed ridden. Eventually her doctor did some blood tests which showed up some worrying results and in February 2019 she was referred for a bone marrow aspirate in Palmerston North Hospital. Test results showed that Frances had multiple myeloma: “I was quite calm when they told me, in fact I was a bit relieved because at least there was something diagnosed – I had been putting up with things for so long. The worst part was having to ring my daughters and tell them.” 

Frances began six months of chemotherapy, as she explains: “I didn’t lose my hair and I only had a bit of nausea and could sleep alright – by that stage my back pain was a bit better too which helped.”

After six months Frances was changed onto a regime of thalidomide and 6 dexamethasone and by early December 2019 her bloods were looking so good that her haematologist recommended she come off treatment: “I’ve been off the treatment ever since although I have blood tests every three months and regular infusions.” 

Frances was a regular attender of her local LBC support group before lockdown changed things, as she explains: “I find the meetings useful and enjoyable. For me it was really eye opening – how did I get to this age without knowing about these things!” 

Frances continues to have regular check-ups and blood tests but tries not to focus solely on her condition: “I know there’s no magic remedy so I don’t dwell on it. I wanted to share my story to give people a bit of hope – when you are diagnosed it’s not necessarily the end of life as you know it. There’s lots of help out there if you reach out.” 


When Nick began experiencing back pain that progressively got worse he went to the osteopath and chiropractor in an attempt to get some relief. As he explains: “I was only 48 at the time and was otherwise fit and healthy but it got to the point where the pain was so bad I couldn’t walk.”

Nick’s osteopath recommended he see a doctor. He was referred by his GP to an orthopaedic surgeon and an MRI showed Nick had a growth on his sacrum. Nick was sent to Wellington Hospital from his home in Whanganui where further tests revealed the growth was a plasmacytoma– his doctors told him it was likely to progress to multiple myeloma. That was back in April 2006 and by May, Nick had begun radiation treatment in Palmerston North Hospital. Nick’s pain improved but his cancer was progressing – in 2007 he had an autologous Stem Cell Transplant (SCT), he explains:

“They told me the SCT was likely to last about five years – they were spot on! For most of the next five and a half years I was in remission and, once the pain had resolved, I was leading a pretty normal life and got back to tramping and playing tennis and golf.”

In 2012, after a move to Rotorua, Nick’s cancer started to reappear and his haematologist recommended a second SCT – at the time he was told it would likely last a further two years. By 2015 blood tests revealed Nick’s cancer had started to progress again so he began Lenalidomide (which at the time, had just been funded by Pharmac). That worked for nearly a year but as Nick explains: “In 2016 the cancer came back and they didn’t know what they could do next so they looked at an allogeneic SCT. However the doctors explained it had only a 10% chance of cure and 60% chance of ongoing problems.”

Nick and his wife Rose had a lot to consider. When it came time to meet with the team at Wellington Hospital things took a sudden turn: “We had decided to try the allogeneic SCT but the team said “we don’t need to give you one – there is a drug trial you can go on… it might help you!”

Nick entered an international trial of 300 patients to test if the immunotherapy drug Keytruda, when given in conjunction with Dexamethasone and Pomalidomide, had benefit for patients: “I was randomly selected to receive just Dexamethasone and Pomalidomide (so was in the control group), it helped me for three to four months but the trial had a rule that if your counts increase 25% you have to stop and that happened for me.”

Nick went on to cycles of different drugs, some had benefits for just a few months, others for up to 18 months. In May this year Nick’s online research uncovered a drug called Selinexor that had been recently approved in the USA. His haematologist supported him in making an application to receive a compassionate supply which he began taking in July.

It has been a long road for Nick as he says: “The most difficult time for me was at diagnosis – I was 48 with one child still at school and I was told there’s no cure. But my youngest daughter is now 30 and whilst I am certainly not going to have an average life expectancy, I am still here!”

Nick has now retired from full-time work but still volunteers in his community and leads a full life: “I can still walk around the golf course and get down on the floor and play with the grandkids! ”

Nick attends LBC’s local support group: “I’m now in my 14th year with myeloma and it can be helpful for people who have just been diagnosed to meet someone like me. When I was first diagnosed it was a nervous wait for each set of results of scans and blood tests but now it’s just part of the fabric of my life.”


As a scientist, Ian Laban is familiar with the processes involved in laboratory testing, but in early 2016 he had no idea that he would soon be the one supplying samples for evaluation.

Injuring his back after lifting a heavy box of books, Ian went to the doctor for painkillers. He was more concerned about catching his planned flight to Australia for a business trip than his back.

Still in pain on his return to New Zealand, Ian saw his doctor again, who sent him to the physio. With no improvement, Ian went to a back specialist and had an MRI. It was a blood test that brought the definitive diagnosis of multiple myeloma. The myeloma had softened Ian’s bones; fracturing four vertebrae.

“All of a sudden, I couldn’t walk. I was on my back for three months in hospital while they put me on chemotherapy, waiting for my back to heal,” says Ian.

During those first few months, Ian says he and his family were in shock.

“For the first month, I couldn’t say the word ‘cancer’. I wasn’t sure what was going to happen. Our whole world was turned upside down. It took a while to work through.

“Once you accept it, you can move on – upward and forward.”

His family were with him every step of the way.

“My wife really helped me. I was like a baby for the first year. She organised time off work. My daughter was overseas and she came back to help.”

After his back healed, he continued to undergo several cycles of chemotherapy. After a year, he had a stem cell transplant, which took another six months to fully recover from.

During that time, Ian wasn’t working. However, the scientist in him was still seeking answers and very much wanted to understand as much as possible about his disease and its treatment.

“I was very interested every time they took my blood or a sample. I’d ask which lab was doing the testing.”

Ian would challenge his consultant about what certain tests were or weren’t being done.

“We’d have a debate. I had a very good consultant who guided me. Although I have a scientific background, he was the specialist.”

Looking to help future generations, Ian doesn’t mind being a guinea pig for research.

“I want my doctor to poke needles into me to find out everything about me, to find out which part of my DNA is causing the cancer.”

For Ian, it’s comforting and reassuring to understand exactly what is going on.

“When you don’t understand, it can be difficult to get through the challenging times. It makes it easier, and gives me peace of mind to have that extra knowledge.”

In May 2017, Ian returned to work feeling grateful that his employer had kept his job open for him. But he knows it’s important to continue to monitor his condition.

“I’ve been off chemotherapy ever since. I have blood tests every three months. Unfortunately it’s the type of disease that comes and goes. At some point, I will need another round of treatment.”

Ian continues to take every opportunity to learn more, including attending LBC’s Blood Cancer Patient Forum last year and replaying the talks on YouTube.

“It was fantastic. The conference gave me hope. Specialists discussed their work, which is leading the way in cancer research. I enjoyed the discussions about what was being done to improve our quality of life and the great improvements in working to find a cure.”

Ian also enjoys attending the LBC myeloma group meetings once every two months to see how everyone is doing and share their experiences.

“What I’ve gained from the group is that although we all have the same disease, not every medication is going to work because our individual makeup is different. What works for me, might not work for the person sitting next to me.”

Another piece of advice from fellow patients that Ian took seriously was spending more time with family.

“When attending groups, people encourage you to do as much as you can with family because it can get tougher later on.”

Ian has recently returned from a holiday in Samoa, where he has extended family.

“Family is priority now. I enjoy work but I don’t stress. I’m not rushing. I’m more relaxed.”

For now, Ian is planning more travel with family, working on an extension to the house, walking and even fitting in a friendly game of tennis.