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Interview - Angus Olsen

11 Jul 2019 at 12:00 AM

Cancer throws you in the deep end. And even if you get remission, you don’t go back.”

1. Please tell me a bit about yourself

Sure, my name is Angus Olsen I live in Katoomba NSW west of Sydney, Australia, in the Blue Mountains. My wife Rachel and I own and work a small train station kiosk we’ve been selling coffee out of for about 12 years. I have two daughters Jane, 5, and Holly, 8. I trained and worked with Walt Disney television animation back in the 90s and have since done lots of different artwork commissions on the side over the years.

2. What brought you into the cancer world and how are you continuing to engage as an advocate?

In 2016 my youngest daughter, Jane, was diagnosed with Abdominal Embryonic Rhabdomyosarcoma (an aggressive soft tissue cancer) when she was 2 years old. She endured 54 weeks of chemotherapy and experimental procedures along with tumour removal surgery, and I’m happy to say is now 2 years in remission. Once I went into the cancer world and saw that I never left, I couldn’t leave and once I discovered I had something rare to offer childhood cancer I feel a duty to stay.

3. Could you please elaborate on this something you offer childhood cancer?

When Jane was doing heavy chemotherapy and her tumour became quite serious, I was extremely lonely and I didn’t have the answers to a lot of questions people were asking me. So I started to draw a comic called ‘Jane’ to explain how lonely it was, and to explain situations that you can’t quite put into words. I drew when I felt like it. I did a lot of sitting, staring at Jane’s numbers, and hoping they’d go up. One day, for some reason, she wanted to fly, so I drew her as a pilot flying a plane.

Originally I was drawing for myself. It was a way to visualise the unspeakable, and remember it after the trauma had passed. But then I put them on Facebook. Some of the Dads had daughters who were at the same stage of treatment, some children had passed away and I wanted to show what the child looked like free of cancer. Cancer throws you in the deep end. And even if you get remission, you don’t go back. While your child is doing treatment you feel like you’re abusing them, like having a nasogastric tube placed – my most recent art. You know it’s for their sake, and you just hope on the other side that they come out close to normal.

4. Tell us about Jane?

 

She’s now a completely healthy 5-year-old, with long curly hair, and starting school. She’s been in remission since 2017. She’s still having a lot of physio because her cancer made a mess of her legs, but she loves to dance, loves her friends and has her own little projects creating huge messes trying to put together whatever it is.

5. Many of those dark moments you've experienced are so aptly depicted in some of your images. What moments in your experience really stand in your memory as particularly low points?

 

There were 3 particularly low points I can recall.

The first was when the nightmarish pressure and work load of the first few months of cancer therapy started eating away at our extended family creating friction. Some doing too much for us and burning out, others completely absent out of what I can only imagine was fear. At the time Jane had contracted flu and we were tucked away in isolation in a cot room with bars on the windows.

The second was when Jane was admitted to ICU as the cancer swelled against her vital organs, 20 years earlier I had watched my own 13 year old brother die in the room across from us. I started planning what I would need to do for her funeral as I’d never seen anyone in my family leave ICU alive before. My own father died of brain cancer just 8 years ago.

The third was just before she received major surgery, we were warned she may have a total bowel removal and be permanently disabled, we were warned the surgery may also kill her. We had to choose between radiation and experimental chemotherapy during surgery. We chose to roll the dice on the experimental. That week a bird had died inside my walls somewhere I couldn’t get to, the smell of death was always with me during that time.

“There was no way of explaining it to anyone without sounding utterly incoherent and insane.”

6. What about particularly tense or stressful moments? Are there one or two points that emerge in your memory now associated with heightened anxiety?

At one point during flu in isolation her Central Line was originally placed incorrectly and failed to draw the many blood samples needed. The only way to draw blood was by contorting her tiny body into a certain position. It caused immense pain for her but it needed to be done and I wasn’t going to let a stranger learn over and over again trying to find the position. Anxiety isn’t a strong enough word for what felt like child abuse, I once inhaled an entire cigar in an attempt to calm my nerves from it.

7. Where did you find comfort during those times? Where did you seek information? (ie. support groups, reading articles, pictures / art, networks / organisations, podcasts, etc)

There was no comfort, I felt completely utterly alone because no thing and no one was strong enough to approach what was in front of me, even hardened Drs and nurses struggled with it. There was no way of explaining it to anyone without sounding utterly incoherent and insane. It’s there at that point I started drawing childhood cancer and my very first image reflects that. *see included image 1 Jane title page.

 

8. What supports did you lean on during treatment?

We had so much support, especially from our family, my sister started up a go fund me, our church raised money, the community raised money, children we giving me their pocket money, homeless people and drug addicts who knew me were giving me money. We had help from the Leila rose Foundation, Red Kite, Camp Quality, Ronald McDonald House, Make-a-wish, Centrelink (eventually). My church minister was very good at listening to me. It was all soul crushing to accept but my pride had no place interfering with their generosity.

9. What causes you the most anxiety now that Jane is in remission?

My anxiety today comes from trying to move back into self sufficiency and normalcy. I’ve still got to pay the bills, but I don’t want to do anything but help cancer children, volunteering for something outside of childhood cancer creates a huge amount of anxiety.

10. What do you do currently to channel your experience?

I create childhood cancer artwork and resources sharing them with medical professionals and families all over the world. Everything I draw is because of what Jane had to endure.

11. Do you find that alleviates the trauma of your cancer experience somewhat, or does connecting with other cancer families make your experience weigh heavier on you?

I feel great within myself, and I love interacting with other Dads of sick children. I don’t think childhood cancer hurts me the way it did anymore, and that all comes from facing it head on through artwork. I don’t think this would work for everyone, but my life story gives me a lot of tools to face it.

12. What gaps are there for parents / carers of oncology parents in terms of supports and information?

When my daughter was in cancer therapy, I went through the available information for us and her. One of the gaps in the available information was that it doesn’t aim young enough. Seeing that gap, I experimented with a simple book I created about a child talking about their nasal gastric tube. I thought maybe I could share it on social media and parents could read it to their children straight off devices.

It went viral; paediatric oncology staff worldwide were messaging me asking for digital copies and print. Since then, in just 6 months, I’ve completed 6 books, they are used across the world, proven in the field, peer-reviewed in the UK, and translated into many languages. The Spanish translation of My Central Line alone reached a million people, and in Taiwan, they’re being used to train oncology nurses on the child’s perspective.

I want to create a library of material for every single cancer, scan, tube, procedure a cancer child may face, to meet every cancer child’s needs – the individuality of cancer means not just one pamphlet is appropriate. I want Australia to lead it because right now it’s just a passion hobby I’m doing on an iPad in between making coffee for tired commuters. It has the potential to help ease the transition into and maintenance of cancer therapy for children and their families worldwide.


Category: Patient Stories
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