Sunday, May 30, 2010

My Early University Years Living With a Brain Tumour and Bad Health

In 1996, 18 months after being diagnosed with an inoperable brain tumour, I moved to Palmerston North to study a Bachelor of Arts in Psychology and Education, with the goal of doing school counselling. Almost ironically, as I still had a very negative view of myself, I wanted to be able to help adolescent women conquer their self esteem issues.

I moved into a flat on the property of a Baptist Youth Hostel and absolutely loved it. I had never known Christians who were my own age before and thrived on not having to feel that I was somehow weird and ‘un-cool’ because of my faith.

Coincidentally there were two girls who lived in the flat opposite mine who played the violin. One of them had been in the New Zealand’s Secondary School Orchestra with me and I was just so thrilled to have people who were also into classical music living so close by. Within the first few weeks, however, we got together to play a trio. Doing this caused me so much pain that I ended up in bed for a couple of days afterwards. I found that devastating and couldn’t work out for the life of me why it had happened.

One of the favourite pastimes at the hostel was to play touch rugby. I tried to join in but this too landed me in bed for a few days, everywhere I had been touched hurt like crazy. Once again, I had no idea what was causing this. I ended up mentioning both of these instances to my GP. She sent me for testing and I was found to have fibromyalgia – a muscle pain condition.

I enjoyed my study, though found it quite frustrating how seemingly everyone at the hostel saw doing a BA as a ‘bugger all’. This general belief certainly didn’t help with my already extremely low self esteem.

In spite of living amongst people who shared my faith the low self- esteem and insecurities that I had through my high school years still plagued me. Unlike my friends at the hostel, I avoided the camera as much as possible and if I was in a photo, never smiled. For me, it felt somewhat dishonest to smile as it would be showing people that I liked myself which was far from the truth.

I kept up my fitness levels during my first 3 years at University with swimming 2 - 3km a day. I learnt, through my study of psychology, the power of positive affirmations and so wrote some up and repeated them to the timing of each stroke desperately hoping that one day they would become my reality. I remember one of them was “I look great and feel great and accept myself as I am”. Nothing could have been further from the truth.

During 1996 I really came to loathe anything to do with sickness and being unwell. For me those two things were highly correlated with feeling depressed and feeling that that I was boring and extremely uncool, or ‘lame’ as the word was for such things was at the time.

When, in July, my mother was diagnosed with a large kidney tumour and I had to fly home to see her in hospital. I was a mess but couldn’t cry. I desperately wanted to be able to cry but could not physically shed a tear. I still, to this day, don’t know the reason why I couldn’t shed a tear until 14 years after I was diagnosed. I don’t know if it was due to something that the tumour affected, or due to facing a lot of trauma over that time and my brain not being able to cope with it all.

Mum had her kidney removed and was told that it was a very dangerous type of cancer and could have spread into other areas of her body before it was diagnosed. I really struggled over the years with feelings of despair at the possibility of losing Mum to the cancer.

The seriousness of the situation with Mum was very hard to deal with, living by the hostel where everyone else always seemed so happy and not having major problems. In spite of being surrounded by people, I felt very alone in trying to deal with my circumstances. I tossed between wanting to just talk to someone about it and not wanting to discuss it with anyone, and opted for the latter.

At the end of my last semester in ’96, after having a period of severe abdominal pain, I was sent by my GP to have an ultrasound scan and was found to have a gallstone. I had surgery over the summer holidays and it seemed such a simple operation. Done laparoscopically it meant that it would only leave me with three 3cm scars and I would only need to be in hospital a couple of nights.

They gave me the stone to take home in a jar (oh thrill!) and it hasn’t been until the last decade or so, knowing other people who’ve had them out, and seeing the great number of large stones, that I have realised that it was in fact tiny. I now really wonder whether there was really any need for it to be removed.

For the six months or more after the surgery I experienced chronic problems with heartburn and nausea. My nickname, within my flat, became “Mylanta lips” because I would always come out in the morning with white lips due to having to drink Mylanta (a white liquid antacid) during the night.

I ended up having to move home for the first semester of 1997 due to the problems with these post-op complications. I absolutely hated being away from all my friends and felt very morose during that time. I also loathed being back in Waiuku where it seemed everybody knew about my brain tumour.

By the time the 2nd semester came around I felt more than ready to go back down to Palmerston North. I had really struggled living back in Waiuku but didn’t think anyone would understand if I tried to explain it.

In the first month or so back with my friends I once again began to get abdominal pain and could feel a bit of a lump on my abdomen. A scan revealed that the shunt, that had been put in when I was first diagnosed, (to drain the fluid from the brain to my abdomen) had bent at more than 45 degrees and there was a large sac of fluid. I was told that I would need to have surgery to correct this, and I knew that this meant having to go home again.

Greatly distressed about it, I met together with a group of my friends from the hostel and we prayed for healing. It seemed impossible to me as, even though I knew that God healed, this was a bent plastic tube, not an organ. I did strongly feel though, after we had prayed together that I wanted to a current song “Thank you Jesus”.

During the flight up to Auckland I felt a strange sense of peace, strange because I was supposed to be facing surgery and the thought of that initially really troubled me. I went and saw a specialist in Auckland and had a scan. The radiographer contacted the radiology clinic in Palmerston North to confirm that I did have the right scan report from there as the scan I had just had showed no sign of a bend in the shunt and the sac of fluid was gone.

This absolutely stunned and thrilled me. Instead of having to stay in Auckland for surgery I caught the first flight back to Palmerston North and resumed my study. I remember several of us who had prayed together before I left feeling the same sense of astonishment, we had all heard that God healed but to experience our prayers being answered in such a profound and unusual way was beyond our comprehension.