Patient Story Type: Myeloma

For most of his life Monty Toko would have described himself as ‘bulletproof’. But when he collapsed one night in 2013 and ended up in hospital, he quickly realised he wasn’t as tough as he had always thought.

“I went to the bathroom and the next thing I knew I was in the hospital for three days!” says Monty.

Monty went through what felt like a million tests while the doctors tried to figure out what was wrong with him. Eventually he was told he had to see a haematologist.

“I said what the heck is that? I had never heard of a haematologist before and I had no idea what it meant for me,” says Monty.

When Monty saw his haematologist he was told he had myeloma which they explained was a type of blood cancer.

“I didn’t want to believe it. My younger brother passed away ten years ago from liver cancer so I thought someone else getting cancer in the family seemed so unlikely.”

Monty had only heard of cancers that were related to lifestyle choices, so when he found out there is no known cause of blood cancer, he was even more shocked that it happened to him.

“When I was first told I had blood cancer, my mind just completely shut off. Everyone started talking about treatments and I didn’t really even notice,” says Monty.

Monty always thought he was invincible and admits it took him a few weeks to let his diagnosis completely sink in before he chose to accept it.

Thankfully Monty’s sister was with him and was able to take in all the information and explain it to Monty when he was ready.

Once Monty began treatment he realised that although he knew he was in good hands, he didn’t really understand the implications of having a blood cancer.

“One of the greatest things I ever did was get in touch with LBC and meet Sarah the Wellington Support Services Coordinator. I would be lost without all the help she gave me.”

Sarah joined Monty as a support person in appointments with specialists so she could help him decipher all the medical terminology that he wasn’t too sure about.

“I also started going to the Wellington LBC support group and I realised everyone was dealing with the same things. It showed me exactly why people like Sarah are there, which is to work out the hardest things for us while we focus on getting better,” says Monty.

In order to be well enough to have a stem cell transplant, Monty needed to lose weight which he did with the help of his local activity club and a lot of walking.

Monty now ensures that his health is his number one priority in life.

Monty ended up in hospital for longer than he originally thought while he waited to be well enough for a transplant after being struck down with multiple infections.

“Sarah would pop in and check on me and see how everything was going which was another way she really helped,” says Monty.

Despite taking a while to accept his diagnosis, three years later Monty says it has taught him a lot – not only about blood cancers and myeloma but also about how he chooses to approach life and his illness.

“I read a lot of the LBC patient stories about how other people had coped with blood cancer. These woke me up a bit and I decided to change my whole attitude,” says Monty.

Monty also lives with diabetes so he has found a way to live with both illnesses and looks after himself as best he can.

“I have tests every three months and my doctor is really happy with the results. I know there’s a chance I may need treatment again but if it happens it happens,” says Monty.

Monty has numerous family members who have dealt with cancer and he tries to share the knowledge he has learnt throughout his ongoing journey.

“I tell everyone to always look after themselves, to make the best of the life you have been given and to just be positive.”

Alarm bells rang for Hamilton man Kerry Bisley when he was driving home from Rotorua and fell asleep on the side of the road for three hours in 2012.

The 49-year-old told his doctor that for a few weeks, his body hadn’t been feeling right and things just weren’t gelling.

“They told me I had a sleep apnoea, but then a horrendous pain began in my back and I went to the emergency unit at Waikato Hospital. They said I had kidney stones.”

Then Kerry received a call from his doctor telling him he had stage four myeloma.

“I sat in my car for an hour,” says Kerry.

I was thinking, I have a wife and a 13-yearold daughter, my life has turned upside down.

While he was lost in thought he received a call from a good friend in Australia.

“He knew immediately something was wrong, so he became the first person I told,” says Kerry.

“My friend said to me “just remember you can’t kill gorse with weed killer”.

Kerry then got in touch with Leukaemia & Blood Cancer New Zealand (LBC) where he started attending the Waikato Myeloma Group to find out more about the disease, but what he found shocked him.

“For the first support group I walked in and I was looking around thinking I had come to my mother’s house for tea. Most of the people were quite a bit older than me and even asked me who I was there with. I had to tell them I was there for me.”

Kerry says it was then that he realised he was very young in the myeloma world with many thinking it was an “old man’s cancer.”

“I’ve learnt a lot from people who have had it for a long time. I knew nothing about myeloma, what better way than to learn from people who have it themselves?”

Kerry, a natural people person, found that cracking jokes became his coping mechanism, but the problem he faced was making those outside of his support group feel comfortable around him.

“When I was younger I realised that people never know what to say to someone who is sick,” says Kerry.

This motivated him to send a text message to everyone in his contact list in the early hours of the morning only a few days after being diagnosed.

It said ‘I have stage four myeloma’ if you want to know what that means go to www.leukaemia.org.nz

“That gave people a chance to find out for themselves, so when I talked to them they were asking questions about it and felt a lot more comfortable with me.”

This willingness to share his journey led him to join Facebook with the help of his daughter Ellen, where he had the chance to connect with all of his old navy buddies.

“Every Thursday before chemo I’d draw pictures and post them on Facebook along with an update on what had happened that week. It helped people deal with what was going on. It got to the point where if I missed a post I’d be getting phone calls on Thursday night asking if everything was okay.”

After 12 weeks of chemotherapy Kerry had a stem cell transplant in February.

“My 13-year-old daughter Ellen was my rock. She used to give me my stem cell injections.”

Kerry says getting sick also made him really appreciate his family.

“When I was in hospital I used to wake up from a nap at 4pm and Ellen would be sitting there doing her homework. She’d be there for hours a day, my wife too, that was really important to me.”

By May Kerry was back at work full time and hitting the gym three times a week.

“You have to tell yourself, “I have a disease, but I’m still me”, Kerry says. “I just take things a bit slower, but I just carry on and make it known.”

Social media was a huge help for me. It helped to let people know I was ok to talk about my blood cancer and it helped them to understand it better too.

Kerry’s next challenge is to take on Lake Taupo in the 2015 Lake Taupo Cycle Challenge with 14 of his friends, family and colleagues joining him for the ride.