Sunday, February 14, 2010

Life Before I Was Diagnosed With a Brain Tumour and The Year That Followed

In the years before the diagnosis of my brain tumour I had three main passions – Music, Study and my Christian faith.

I had felt called from an early age to work in Africa amongst the poor and share with them the love, joy and acceptance that I had found in God. By the time I was diagnosed I had narrowed that down to that I was going to do physiotherapy with the goal of working in Nigeria.

I was an absolute perfectionist musically and academically and beat myself up hugely over any slipups in either area.

I’d been playing the violin since I was 11 and singing since I was a young child, with professional training from the time I was 14. By 1994 I had been in the New Zealand Secondary School’s Orchestra for two years.

I loved the violin and the way that I could express myself on it, but felt real frustration at the constraints of having to play accurately to the semihemidemisemiquaver. I also sang classically but it was not my main ‘instrument’, so to speak. Even though I loved being able to produce beautiful music with both of my instruments, I would never feel happy about any of my performances and would only pick all the faults I saw in them.

During my high school years I never listened to mainstream music and basically just saturated myself in classical. It was my love and my passion and, by the time I was diagnosed, very much part of my identity. 4 days before my diagnosis a photo had been taken for the local paper about my having been accepted into the national orchestra again, and this was published on the day I was diagnosed.

In the previous 8 months I had been working hard at school so that I would get the marks to qualify for Physiotherapy school. This really worked to my advantage as I had to get estimate marks for the last term of my 6th form year, due to my having to have neurosurgery, and the teachers were generous with what they estimated and I easily got the marks I needed for physiotherapy.

About a week after my surgery, when sitting in a café across the road from the hospital with Mum and a close friend, I was told what was to me the most devastating news I had received so far – that due to their having put a shunt in my brain and the risks of it blocking, I would not be permitted to ever go into a third world country.

I remember sitting there just stunned and feeling as though my world was falling apart. Suddenly all that I had been working towards and dreamt of doing since I was a child could no longer happen. I remember thinking that if I couldn’t work as a missionary in Africa, I couldn’t really serve God at all. That was the first time that I really started to question what purpose there could be in what was happening. And the first time that I felt that somehow what had happened was out of the hands of God. Why would he NOT want me to be a missionary? I remember feeling totally disillusioned.

During my two weeks in hospital many of my close friends and their parents came to visit me and there are two things that I still clearly recall. Firstly, I couldn’t work out why everyone was so upset! To me, I knew I was going to be alright. I had heard in the early hours of my D-day (diagnosis day) that I had a brain tumour and that had been accurate and so I knew the rest would be too.

The other thing I recall feeling was a huge amount of happiness due to the acceptance from many people that I had felt hadn’t really cared less about me beforehand. This initially was something that I liked, but developed into something I really hated.

I came to a point, many years after diagnosis, where I felt that if people didn’t want to have to do with me before knowing I had cancer, then it was only pity or guilt that was motivating them to want to have to do with me now and they were two things I disliked with a passion.

After I was discharged from hospital, I have no idea why, but I felt a real pressure. I felt worried that everyone (at my school, and in my hometown, Waiuku) would expect me to have changed through this experience and I didn’t feel I had at all. I recall feeling very anxious about attending school again later that year, worried that people would expect me to somehow be a better person than I had been before diagnosis. I now can’t conceive how I could have thought such a thing, but know that it was a very real feeling at the time.

Prior to my diagnosis there had been a huge build up of fluid that caused extreme pressure in the brain. This caused my pituitary gland to be so squashed that they couldn’t see it clearly with a CT scan. It was only after an MRI scan that they could fully see the damage. The surgeons also said that I have a very thin skull due to the extreme pressure in the brain for a long period of time. I was also told that I could never bungy jump, go skydiving, or scuba dive due to the pressure these things put on the brain.

When I was diagnosed the doctors were all amazed that I had no symptoms other than the severe headaches as the build up was so extreme.

After my surgery I was referred on to both endocrinology and gynaecology departments. My hormone levels were all over the place, due to the suppressed pituitary gland and hypothalamus for so many years. I had grown tall (184cm) when I was 13 but had not had any other development that would be expected in a female teenager.

Early in 1995 they started me on hormone therapy to try and bring on menstruation and that was when I began to go through puberty as I hadn’t experienced it prior to my diagnosis. Feelings of rebellion, anger, resentment of my parents rose to the surface.

Mid-1995, after extensive research into the other options available to treat my type of tumour, Mum and Dad decided that we were going to go over to the Hoxsey Clinic in Mexico. I remember thinking that there was absolutely no need, but hey, if I was going to get a holiday to America out of it, I’d go along with it!

While my mother and I were in Tijuana, Mexico, my father was asked by a local paper to give them a photo of me to go with a comment mentioning that I had received money from a trust to help us go there. Dad gave them a passport sized photo, assuming that this was the size that would be used. A few days after our arrival home I came home to see an enlarged photo of myself on the front of the paper with the comment “Gabrielle Bryce has received funding from a trust to help towards alternative cancer treatment in Mexico.”

I was devastated that the photo had been blown up and put on the front page of the paper, but didn’t realize just how much it would affect my life from then on. No longer did I have anonymity about my condition and suddenly I became known in our small town for all the wrong reasons.

Now when I walked along the street, or shopped in the supermarket, people would cock their heads and look at me pityingly. It was what I came to call the “oh you poor thing” look. I would have strangers stop me in the supermarket for many years to come and ask “Oh Gabrielle, How are you?”, while I would be thinking “WHO are you?”

Around two weeks after this photo being published I decided to dye my (long dark brown) hair blonde. I had never dyed my hair before and initially had a disaster with it, choosing to use ‘Sun-in’ to do it and it turning a bright orange! So I snuck off to my hairdresser, during school hours and got it dyed blonde professionally. Mum and Dad knew nothing of it and it wasn’t until I walked past Mum’s classroom later in the day that they found out!

It wasn’t until many years later that I was able to see that my dyeing my hair was actually my way of disguising myself. Also, in the photo that had been in the paper I had my hair pulled back so I wore it down from the day it was published.

Lots of people in my hometown now knowing about my tumour played a significant role in which university I chose to go to. Instead of going to Auckland or Waikato, where I knew a lot of people from my year at school were going, I chose to go to Massey University in Palmerston North, where I knew only four girls from my year were going to be. I didn’t want anyone knowing about my tumour, except on my terms. I knew that none of those girls would be in the Baptist Youth Hostel and flats that I applied to live in and so I felt somewhat ‘safe’ from the Waiuku gossip about it all.

In 1995 I saw my school’s Career’s Advisor and Guidance Counselor to try and see what I could now do with my life. I considered Occupational Therapy, furthering my music on the violin, and Social Work, but ended up deciding that I wanted to become a school counselor to try and help young women deal with the self esteem issues I had been plagued with in my teenage years. I ended up applying for and studying a Bachelor of Arts majoring in Psychology and Education.

From 1995 and through my years at Pamlerston North, even though I didn’t realize that was happening at the time, I went through the first 4 of the 5 stages of grief, in coming to terms with cancer and having a terminal illness (as set out by Elizabeth Kubler-Ross in her book on Death and Dying in 1969).

After my diagnosis, and throughout 1995 I was in total denial that I had cancer. I refused to join ‘Canteen’ (a support group established for teenagers with cancer) and wouldn’t let people talk about that I had cancer, or a terminal illness.

I remember making and selling muffins for the school staff and having a stall set up at school for one day selling them. I was however, horrified when a fellow prefect tried to get some kids to buy some saying “if you don’t buy them she’ll die”. I know he thought it was quite funny and don’t think he could have had any understanding just how terrible a thing that was for me to hear.

We were blessed to have received some funding towards the cost of our flights plus the treatment from a local trust fund – the ‘Barbara Hull trust’. I remember Mum talking to me about the fact that this actually wasn’t a holiday and we were going to have very little money for spending. I thought ‘whatever’ and prayed that somehow I would be able to get some spending money.

Less than a week later a man came up to me and gave me an envelope and told me that it was a gift towards my spending money. When I opened it up later I found it was a cheque for $1000. It was the first time that I had ever experienced such a clear answer to prayer.

Going to the Hoxey Clinic was surprising in that it seemed no different than going to any hospital. They dealt with cancer all day every day and so I guess that was why it was no big deal. When we left they let us know that they would need us to return every 3 months, but we knew that there was no way we could afford to do that.

While I lived at home I stuck religiously to the strict Hoxey diet but found it impossible to stick to in my first year at University. I had chosen to live in a flat beside a hostel so that I could cook my own meals but really struggled to do it and ended up just abandoning it and eating junk like the rest of my peers. I felt bad for not sticking to it, especially after all the money that had been spent, and didn’t let my parents know that I had left the regime completely until much later.

A verse from the bible that we were given at the time of my diagnosis by a family friend really kept me going through 1995, and indeed many years after diagnosis. This verse was Psalm 139 v. 16 from the Bible and says “All the days ordained for me were written in your book before one of them came to be” This really spoke to me during the time immediately after diagnosis and reassured me that God not only knew about what was happening, but he actually knew about it before I was even born and it was therefore part of the plan of my life and in His hands.

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