'My husband survived brain cancer. No one talks about how it impacts the family.'

My life changed forever on June 30, 2013, when we first discovered that my husband had brain cancer.

Our friends had stayed over after dinner and a couple of glasses of wine. We waved them off, then my husband Ross set off on his usual bike ride. 

Afterwards, instead of seeing him walk through the door with a hello, I heard a loud bang and swearing in our carport. The friend who was cycling with Ross thought he might be dehydrated, but he just kept repeating the same words, "This is so weird" and he didn’t recognise who I was or even our son, Max.  

I knew something was significantly wrong and called 000. At the hospital, doctors discovered he had a seizure while riding his bike and the cause was a brain tumour. The initial belief was that he had a benign tumour but after further analysis, they found it to be cancerous.

Watch: Some major warning signs of Brain Tumour. Post continues after video.

We were able to put off the surgery for a few weeks so we could attend our older son’s wedding. Ross seemed fine and looked normal until he got up to make his speech at the reception. He was having a hard time getting words out, and they were not in his usual engaging, funny style. The implications of brain cancer were beginning to sink in for me.

After surgery to remove the tumour, Ross started radiation treatment, and I was terrified. He had a customised mesh mask made that covered his entire head that the radiologists used to screw him onto the table so he wouldn’t move during treatment. This went on daily for six weeks, and then chemotherapy for the following six months. 

It was an intense time, focused on fighting the cancer, but can you really fight it? We were lucky that we live in Sydney and had access to an amazing medical team, including an oncologist, neurosurgeon, neurologist, radiologist, psychologist, psychiatrist, occupational therapist and importantly a Neuro-oncology Clinical Nurse Coordinator who could answer our questions and concerns. This was so valuable in our times of panic when we had to make decisions in unfamiliar territory and under significant emotional pressure.

Image: Supplied.

I had to deal with managing all our affairs, be a full-time carer for Ross, keep our business afloat and be a mother to our son. One of my biggest frustrations was, despite having an enduring power of attorneys, our providers like the banks, credit cards, insurances, and suppliers, would not allow me to make changes or conduct business because I didn’t have their correct authorisation.

Despite the intensive effort and focus during the initial phase of diagnosis and treatment, we were totally unprepared for the aftereffects of the cancer treatments. Ross' personality changed. He was easily frustrated, grumpy, depressed and not himself. He was angry and did not have patience, mainly with immediate family. My son did not understand why his dad had changed and I grieved for the man I had married. 

We rarely socialised or went out in the evening, and when we did go out, we were wary, wondering how Ross would respond to people and situations. Ross was diagnosed with depression. I developed anxiety about my health - my mum had died when I was just 15 and now my son faced the possibility of losing a parent. I felt an acute need to stay alive and healthy. I am grateful for an understanding GP who helped me through this. As a result, our family and individual wellbeing decreased significantly, typical for families living with a brain cancer patient.

My son seemed like he was doing okay. I tried to get support from the school, but they were not prepare them for something like this. I was too busy getting Ross to and from appointments to get Max to a psychologist. Now Max recalls the very place where he was standing when he first felt isolated and lonely. It was when the paramedics were inside the house, and he was out on the verandah waiting for my friend to pick him up. This image of my eight-year-old having these intense feelings that have remained with him through the past 10 years still makes me tear up. 

Life was like living on a rollercoaster. Some days/weeks were okay, and then we would plummet again. As life improved, we still anticipated the fall. Ross would get even more grumpy, and our communication in the family tanked. I knew I had to do something to help our family, so I started to look for other types of support.

I convinced Ross to attend a seminar by Toni Powell about the power of words and gratitude. I could see that even a few hours of listening and practicing switched our way of thinking, encouraging me to learn more and attend the Happiness and its Causes conference where I was introduced to the Science of Wellbeing.

A brain cancer diagnosis impacts not just the patient but also the family unit. I felt we needed more help in our daily communication at home and so I took a part-time job to learn more about family wellbeing.

Through the Family Connect program I learned about having courageous conversations. We held family meetings where we couldn’t interrupt each other or try to "fix" things and had to wait for our turn to speak. We started the initial meeting talking about strengths, and what good things happened in our days. We progressed to meetings where we talked about our family strengths, and what we did do well as a family and then moved onto those difficult conversations about what we weren’t doing well. 

That was hard. We listened to Ross tell us about how his brain didn’t work, his regular confusion, emotions, and we were able to tell him how his yelling at us affected us greatly. These conversations were game changers for us and improved our family wellbeing. I was confident that this approach was working when on separate occasions, both Ross and Max asked if we could have a family meeting.

Image: Supplied.

Today, we are better but certainly not perfect. We still live on the rollercoaster, but it doesn’t climb up so high or race down quickly or so far. We have a wellbeing strategy we now use in our family. Gaining this knowledge made me want to learn more, motivating me to commence a Master's in Applied Positive Psychology (Wellbeing Science) and after graduating last December, I took a job in this field. 

Ross still goes to his many medical appointments and continues to challenge himself on his bike. Our son is in Year 12 with his life ahead of him. Our family was blindsided, but our response has been one of learning - formal, informal, reactive and 'on the job'. Ross' diagnosis has changed us all and I am very proud of how we have responded. We have had terrific support from friend, the medical community, and we are doing okay.

What is the reason for telling you my story? May is Brain Cancer Awareness Month. We were 'lucky', Ross is one of only 17 per cent of people who are still alive in 10 years. The statistics of brain cancer are horrific.

• Half of those diagnosed with brain cancer are dead within 15 months.
• Brain cancer is the number one killer of adults under 40 with cancer.
• Brain cancer kills more children than any other disease.
• Brain Cancer is one of the most under funded and under researched cancers and there aren’t many people left to raise awareness.

We are building awareness and fundraising for brain cancer research. 

If you would like to help change these awful statistics, please visit www.ridingforbraincancer.com.au to make a donation with all funds going to brain cancer research.

Feature Image: Supplied.