No Such Thing As False Hope

Marc Elliott’s Story

In 2005, at aged 31, Aucklander Marc Elliott was diagnosed with a grade 4 glioblastoma multiforme brain tumour. Following his diagnosis, the young father of two was determined to stay alive for at least three years so he and wife Susannah could take their two-year-old daughter Rosa to her first day of school. Marc is now 49, Rosa is 20, son Archie 18, and Marc and Susannah’s third child, Austin, born five years after Marc finished treatment, is about to start high school. We invited Marc to tell us his inspiring story.

BTSNZ: Tell us a little about yourself…

I'm 49 and live in Auckland with my wife (Susannah) and our three children (Rosa, Archie and Austin). I am a partner in a small, three-person research and strategy firm. All of our work is in the primary industry working with growers and farmers.

I was diagnosed with a glioblastoma brain tumour at 31 years old when my daughter Rosa was two years old and my son, Archie, was five months. It took five years before we were confident enough that I would be around for the long term to have the third child we had always planned and Austin arrived in 2010. He is now thirteen and about to start high school.

Eighteen years ago my main goal was to stay alive long enough so I could take Rosa to her first day of school. I have been incredibly fortunate.

I had a chance conversation the other day with a person whose mother-in-law had died of a brain tumour. When she heard what tumour I had dealt with she could not believe that I was still alive! This got me thinking that if I shared my brain tumour journey with others who are at the start of theirs, maybe it might give them some hope. Hope that they might go on to have children, a lovely family life, an active life (I'm a regular cyclist and skier) and a career.

Over the years I've been contacted by several people who have had a brain tumour and I've been lucky enough to be able to provide them some thoughts and ideas around how we went about dealing with mine.

A key thing that we learnt was that just doing something to improve your odds was the best thing that you could do. Out of the dozen-odd things we did, we will never know which of them, if any, made any material difference. But moving from a passive receiver of surgery, chemo and radiation to being actively involved in your healing, no matter what it is, puts you into a mindset of trying to at least take some control of the outcome.

BTSNZ: Tell us about your brain tumour journey…

I had a seizure while riding my bike home from work. I went to hospital and was given a referral to see a neurologist. I was on a long waiting list but luckily as Auckland is a training hospital, and as my case looked interesting, my appointment was brought forward from about six months away to within a month.

I was initially diagnosed with epilepsy and an MRI scan was booked as a precaution. The day after the scan, I received a call from the specialist asking me to come in (he had a waiting list of about 6 months so I knew all was not well).

Boom! At the meeting I still remember his words: "Look Marc, I am very sorry but we diagnosed you incorrectly, we found something in your scan that we don't like to find in brains. It’s a brain tumour and the surgeons are looking at it as we speak".

I managed to get onto a new chemotherapy drug called Temodal (temozolomide) as my oncologist was bringing it into the country via his private practice, however he couldn't give it to me in the public system as it wasn't funded at that stage. The total bill was about $55,000. Fortunately, it got funded part way through my treatment which reduced the cost.

Good friends of mine ran a silent auction night which raised bucket loads of money and more than covered my medicine costs. The event was unbelievably successful. There was a signed English rugby world cup jersey that received bids from the UK. Among many generous donations another one that went for a load of cash was a dinner party for ten cooked at your own home by Warren Gatland and a few of the All Blacks who were playing at the Chiefs. When I was at university I played rugby and knew a lot of these people from those days. Their generosity was remarkable.

An English tourist, who saw an interview on regional TV that promoted the event, was so touched by our story that he even gave us his camper van as he was returning to England.

I went through all the treatment of surgery, radiation and chemo. Luckily my tumour was in the right frontal lobe so they could be a bit more confident with surgery and the surgeon said they had removed all of the tumour they could see.

For some reason when I came out of surgery I couldn't speak. I had to relearn that, which I did with the help of my two year old daughter doing daily exercises with our mouths and tongues. She found them particularly funny but they were seriously good for my rehab.

There is so much to write about. On our journey we went completely organic, stopped all sugar, did meditation, yoga, stayed fit. Two days after they found the tumour (so before we knew what it was) I ran the Auckland half marathon. Taking that fitness into surgery was a big help. I used a naturopath oncologist and my sister found a brain tumour dietician in America who sent us a recommended diet.

One of the most helpful things we did was to convince myself that I was going to live. We had a GP who told my wife to take videos of me to show our kids at their 21sts, and recommended a support group for my wife which consisted of men who help mentor kids without fathers. We also had a a young surgeon at a follow up consult tell me 'it wasn't a matter of if but when he will be seeing me on his operating table again.' We never interacted with either of those two gentlemen again.

To get my head into a space that living past the ‘20% chance of lasting two years and the 5% chance of lasting five years' could be a reality, I used NLP (neuro-linguistic programming) and this basically helped to programme into my mind memories that I was going to have. This was incredibly powerful and got me into a complete mindset of survivability.

I also did lots of visualisations. There was one that I still clearly remember that I did walking around a local park on a regular basis that proved to be powerful in my own mind.

BTSNZ: How has the brain tumour impacted or changed your life?

I had ongoing seizures for quite a few years, which stopped me driving. I'm prone to tiredness and headaches, and find it easy to get a bit confused and tired if too much is going on. However I don't know if the confusion and being prone to tiredness may just be how I was always going to be.

I had an incredibly understanding workplace and boss who kept paying me full salary through all of my treatment, and from memory for most of my recovery, until I returned to work part time. It took a few years for me to return to full work duties but I eventually recovered and became a shareholder partner in that research agency, seven years after being diagnosed.

I'm incredibly fortunate to have my wife Susannah and our three children. Susannah is a sonographer so she understands things medical. She works three days a week, partly because she knows I need the support to keep working full-time. She carries a significant load to make life easier for me and our children, and I would be a bit stuffed without her. However Susannah is not a career-focused person, even though she loves what she does and is very good at it. She is very creative and also loves time at home making things and ensuring the household is run efficiently.

BTSNZ: Any final thoughts?

I've just been completely blessed by family (immediate and extended) and friends. I feel like all I have done is gone along for the ride with these fantastic people that I've been luckily enough to be surrounded by. I haven't even mentioned all the support from my Mum and Dad and my siblings, the hundreds of cards of support we received, the meals delivered and so on. The hospital staff and the quality service provided at Auckland City Hospital are second-to-none.

Another reason why I decided to share my story is that I am so impressed to see Brain Tumour Support NZ now providing such a great resource for brain tumour patients and their families. When I was diagnosed there was nothing like this and hope was hard to come by. We tried to find a little support group of brain tumour patients but there were none around. Eventually we heard of one that had three or four people in it. We tried to get together, however within a few months half of them had died - which knocked us a bit. So it’s good to see how much improved the treatments are now, people seem to be doing much better and that there are fantastic resources like this charity to give people hope and see what is possible. Happy to help if needed.

But I guess the last thing I wanted to say is, while not every one is fortunate enough to survive a glioblastoma multiforme grade 4, some do and there is no reason why that person can’t be you. This is why we must believe that there is no such thing as false hope.

Marc Elliott, November 2023