“I had a brain tumour removed when I was 26 years of age. I had been unwell for many, many years but it was creeping up very slowly. I struggled with hot and cold, weight and eyesight fluctuations, depression, and so on. I felt like a hypochondriac, because I was constantly going to the doctors, but not one of them had been able to identify what was going on, until we moved from the country to Melbourne for my husband’s work. Even then it took time.
“One night I woke up and said to my husband, ‘I can’t see anything’. The next day I went to a different doctor at the clinic I had been going to after moving to Melbourne and she did a finger-eye test on me. She said, ‘I’m just going to send you for a CT scan’. As soon as I got home from the scan, the phone rang and I was asked to go back and have it again. A couple of days after that, I went to the doctor and was basically told, ‘there’s no easy way to say this, but you have a brain tumour’.
“It was a foreign concept because, what does a brain tumour actually mean?
“After different tests and medications my vision was still deteriorating very, very quickly, so I was bumped up the list for surgery.
“The tumour was just outside the pituitary gland, on the stalk, but it was pressing on my optic nerve and affecting my memory. As I was preparing for surgery, I was told that I could lose my eyesight, I could have a stroke, I could have epilepsy, and I could also lose my memory.
“When I came out, I remember waking up and seeing a nurse. I knew her name and said it straight away. That was such a relief.
“After the surgery the headaches were absolutely excruciating and I still didn’t know what the outcome would be. They’d removed the tumour, but they couldn’t identify it – whether it was benign or cancerous – and were actually sending it around the world to get it identified.
“A few days later, I was told to go home. They couldn’t tell me if I had six weeks or six months or six years to live. I just had to go home and wait for news.
“After about six weeks, I went to the surgeon for a follow-up. He said to me that my tumour was ‘on the benign side of things’, which is really interesting because I always thought there was ‘benign’ and ‘malignant’ but there is actually a scale.
“Anyway, I just had to move forward from there. From a physical perspective, I was totally unbalanced – I would keep walking into walls. So, of course, that was end of driving, but I tried to stay positive and eventually began using the bus.
“But the biggest issue for me was trying to cope in a world that just didn’t understand what had happened to me – who I was now. People kept telling me I should be grateful the tumour was out, and I was trying to do all the things they wanted me to do and feel what they expected me to feel, but I was a confused young lady. I didn’t know what was happening to me; I was depressed, I was scared and I didn’t know what my future would be.
“I became quite obsessive about things, like hanging washing out with the same coloured pegs as the item was – so a white shirt would have to have two white pegs. And it was a real problem. If I wanted to leave the house I’d go over and over, checking every item was off, making sure I locked every door. Sometimes I’d have made it down the road and have to come back multiple times.
“It was as though, having lost control of everything in my life, I needed to have control over something. I was scared that if I didn’t do things this particular way, then something bad might happen.
“But life went on. Our next hurdle was that in taking out the tumour they had severed the whole pituitary stalk, so I’d lost pituitary function altogether, which I later learnt was panhypopituitarism. That meant I had to be artificially fed all the hormones that would normally be made by the pituitary gland. I gained a lot of weight, so my self-confidence was completely shot. My body was not how it had been, my mind was not how it had been, and still I was supposed to feel grateful.
“I tried to find out information about this condition, because of course I had never heard of it before. My initial research revealed nothing so, because this was pre-internet days, I went to the only place I thought I could find any information – the State Library Victoria. I found one paragraph in a medical journal – not much to go on, and I felt like nobody could possibly understand how I was feeling and nobody could help me.
“That lack of understanding is probably the critical theme throughout my experience. People not understanding that because you look pretty much the same on the outside, doesn’t mean you’re the same on the inside. Not at all. Aside from the changes to your brain and how you function, you’ve lost certainty – the assumption of good health, because it (and the ‘you’ that you knew) were taken away in an instant.
“But there was another change beginning to take place within me. I did not want to become a statistic, or as one nurse said to me during a hospital stay when I collapsed due to having the incorrect amount of fluid in my body from medication I now needed to take, “expect to be in and out of hospital for the rest of your life”. I was determined to fight against these expectations. I was told I could not stay far from home, because I needed to carry medication with me that must be kept refrigerated. So, I bought a cool bag with an ice block and started walking. I walked early in the morning; I walked in forests; I walked for fundraisers; you name, I walked for it! I lost weight. I looked better, so this gave me more confidence to simply be the me who I now was. I didn’t want sympathy or pity, I just wanted understanding. I wanted people to support me on my journey to a better quality of life. Some special people did, but for many there was still a lack of understanding. For them, I no longer fit into their expectations, but I couldn’t, because my life had been changed forever and I needed to change with it, in order to survive.
“About a year after my surgery, I was asked if we would consider trying Ovulation Induction, which is similar to IVF. After having been told that my husband and I would not be able to have children, this really gave me hope of ‘normality’. This was not a simple procedure and involved medication and injections which created a lot of abdominal discomfort, however after two attempts I fell pregnant. At approximately eight weeks I began to bleed and was rushed to Emergency. All the information I was being given by medical staff was that I had miscarried and just needed to wait for an ultrasound to confirm, but I refused to contemplate this. Remarkably, the ultrasound still showed a heartbeat, I was happy, but scared. A follow up appointment with an obstetrician was deflating, with him telling me that he did not expect this pregnancy to be viable. I was to go home and rest and basically wait. I went home worried, but not defeated. I was determined for this baby to continue growing in me and I busied myself by re-teaching myself to knit and began knitting baby clothes. Our eldest son was born almost full term after I decided to be induced, as it was not known if I would produce the hormones required to begin labour.”
“After a couple of years, we hoped to repeat Ovulation Induction, but we had moved location due to my husband’s work and needed to use a different clinic. I needed to use much stronger medication in the hope to reduce prolactin levels to achieve a pregnancy. The medication unfortunately made me feel like a zombie and after many months, we decided it was unhealthy for me to continue. It was a hard and sad decision. I still yearned for another baby, so we decided to travel the very difficult and long journey to become adoptive parents.
“And that’s how we adopted our second son who we later discovered has Fetal Alcohol Spectrum Disorder (FASD), and that’s a whole other story. Because of those challenges, my pituitary disorder is being pushed aside. Sometimes that’s a good thing, because I don’t want to dwell on it, but I actually do have to remember to look after myself, not least because a recent MRI showed that I’ve had a mini stroke.
“Strokes are in my family history, on both sides, and then you add to that my pituitary issues and brain surgery – which increase stroke risk – and, well, unfortunately I don’t think my battle is over just yet. But neither is my determination to be the me, who has been created from the challenges within my life.”