The Beginning – Some background and the day of diagnosis.
My husband Mick and I knew we were due a curveball or two. Our lives to date had been great. We had both had wonderful childhoods within supportive loving families. We had a great time at university where we met. We lived on campus and had a fun diverse group of friends who were studying a range of degrees from engineering to law and from arts to medicine. We both studied commerce which led to interesting, challenging careers. Mick entered into a career of professional chartered accounting and investment banking. I began my career with an industry accounting scholarship and then moved into senior commercial and account management roles in large chemical and telecommunications companies. We had lived in London for two years and had travelled to many parts of the world. We were living in a wonderful part of the world, Sydney and felt very lucky to live in the suburb of Randwick right beside the eastern surf beaches.
Nothing really tough or hard had come across either of our paths. However we did have a few significant challenges early on in our marriage that strengthened our love and trust in each other and our commitment to our dream of a rich family life. My father in law had a life threatening illness just before our wedding. I had an ectopic pregnancy which led to emergency surgery and I lost a fallopian tube. Then I had an early miscarriage. We fortunate that in a relatively short space of time after that I had a successful pregnancy and our son was born.
We were keen to have a few children if possible so by the time our son was nine months old I was pregnant again. We decided to search for a new larger home for our growing family and next stage of life.
Our search led us to a house in Fairlight, across the harbour and beside Manly, the world famous surfing beach. The house was perfect for our stage of life. It was close to the surf, which was a must for Mick and I. It had the added bonus of also being near the harbour beaches and just two blocks from a little supermarket and two coffee shops. It had two outdoor spaces for the kids to play. A spare bedroom for the grandparents or friends to stay. It was level so it would be easy to carry toddlers and shopping bags and prams into and out of the house. Two of Mick’s closest mates – friends of ours from uni who also loved to surf – had already made the move to Manly – it was a bonus that they would be nearby.
We didn’t realise it then, but this was not only going to be the place where our children spent their early childhood years, it was also going to the be the place where Mick would spend the last few years of his life. The house in which Mick would die. It would become our headquarters, a place of respite, a place of palliative care.
For so many reasons – most of which we were yet to discover – we were fortunate that we moved to our home in Fairlight. Once Mick was diagnosed we would go from spending weekends, evenings and holidays together – to being together, 24 hours a day. Enjoying the new beaches and village life of Manly would provide a much needed distraction from our reality. We would be sharing our home with our support crew of our parents and many friends. The courtyard and garden would provide invaluable pockets of space to take time out and reflect when people were visiting and kids were playing. Some of the symptoms that Mick would develop included a significant limp, loss of balance and impaired vision from the swelling in his brain. This would cause much anxiety on my part, in case of falls – particularly when he was carrying our toddler or new born baby. A level house would reduce the chances of a fall.
In November 2008 we moved to Fairlight, and celebrated our son’s first birthday. It wasn’t until Christmas morning that I started to get a feeling that something was going wrong. It was a beautiful sunny morning and we walked to the beach to enjoy our new surrounds. Later that day, we would head back home to host a long lunch with our family. Something was not quite right with my husband’s energy and demeanour and I couldn’t quite put my finger on it. Sure we were both tired. Mick had been working long hours. I was back at work 3 days a week and I was 5 months pregnant. Life was good. We were lucky to be living where we were and we were fit active people. So why was Mick a bit flat and why was it a suddenly a struggle for Mick to go for a 3km walk?
Mick said he had a headache, which was unusual because he was rarely sick. I put it down to Man Flu but it still didn’t sit right. I was disappointed because I wanted to celebrate the start of our family summer time together and create happy memories in our new home. I had plans to use the remainder of the holidays to sort out our house further, unpack more boxes and rest. I had hoped Mick would have energy to take care of me for a bit. I was tired and pregnant and had orchestrated and organised most of the move. The sale of our old house. The purchase of the new house. I wanted to hear Mick laugh and ask him for help but I could see he was out of sorts.
That evening as soon our family left, Mick climbed into bed. He felt nauseous and cold and mentioned his headache again. Panadol did not really seem to help and when I took his temperature he didn’t have one. He vomited in the bathroom several times during the night and was in a lot of pain.
This continued on and off for a few weeks but Mick soldiered on and continued to work. He had a significant project to deliver. My sixth sense continued to tell me something was wrong. That our lives were changing. I encouraged Mick to go and see a doctor. He had hardly ever been to a GP in the ten years we had lived together. He surprised me by agreeing to go. I booked it and he went and came back saying there were a few bugs going around and he should be fine.
Then was I imagining it or was he starting to squint with one eye and was his balance a little off? Was this really due to a virus? This time I insisted we go back to the doctor together. I told him that my unborn baby, my one year old and I needed him and we could not go on like this any longer. This was serious.
When a wife turns up with a fit strong guy who never goes to the doctor, you would think the GP might undertake a more comprehensive review of the symptoms. But again after a short visit, we were back out the door and told to give it a few more days.
We waited a few days and then we went back to the doctor again. By this time Mick’s limp was marked and his squint on one eye was pronounced. We had spoken to a doctor friend of ours who had recommended a CT scan. The GP readily agreed and I dropped Mick at the x-ray facility. I could not stay. I had to put my son down for his lunch time sleep. So I asked Mick to give me a call as soon as he was done or catch a taxi home.
It was weird state to be in because I wanted to let Mick manage his own health and not step in and be the nagging bossy wife but something was clearly not right. Mick was not communicating or thinking clearly.
I waited and waited and heard nothing. I was really tired. I wanted to sleep like my son. But I wanted to be available for Mick. Finally he walked in the door and he told me that the scan had shown a growth the size of a golf ball in his brain. It was probably the most aggressive form of brain cancer. I was shocked. I was relieved because now at least we had a diagnosis to work with. But I also knew that our lives had changed. I had seen brain cancer stories in the press and on TV documentaries like Australian Story. I knew that brain cancer was fatal. We were both devastated.
I was upset that he had had to go through the diagnosis himself and that he had returned to the GP without me. I wished he had called me. He had some some drugs to reduce the swelling and prevent possible seizures and he had referrals to two of the top brain surgeons.
We had to tell our parents we now had a diagnosis. We had to tell our friends. We needed an action plan. I did not panic because I had experience remaining calm while managing “crises” and projects at work. I put my emotions on hold into a parking lot and stepped into an automatic pilot mode. My mind instantly identified the key issues, assessed the risks, developed an action plan, prioritised, communicated and delegated. Mick had brain cancer and he would need surgery and then further treatment. We were blessed with supportive parents/grandparents and a vast network of friends. Thank goodness that financially we had been conservative and had some savings.
I would find that my project management skills would be invaluable on the journey ahead. We had been hit by a curveball of a magnitude far greater than we had anticipated. And there would be many aftershocks to come. The foundations of life as we knew it had been rocked and were starting to crumble.
Related Posts: To read more about the next few days following diagnosis click on one of these posts
Putting on a New Persona – The Day after Diagnosis
No longer Equals – becoming a Carer
Rainbows & Rollercoasters 