It was a summer day like any other. I walked down to the school to pick up the boys just as I did every school day. Just after I walked through the school gates my head exploded with pain. I made my way slowly to a bench to sit and wait for the boys to come out from their classes. While I waited I realised this was no ordinary headache. Walking was increasingly difficult and I was extremely nauseous. I called a friend and asked her to come and pick us up from the school and drop us home as I didn’t think I would be able to walk back home again.
Three days later the pain had not subsided and the nausea had increased. I couldn’t keep water down. I made an appointment to see my GP on Monday morning and headed down to the local medical centre with my husband. After asking a lot of questions and looking me over; the doctor at the medical centre gave me a CT scan request, a shot of pethidine and a shot of maxalon. He told me to get the scan done if the headache didn’t go away with in two hours. After thirty minutes of mild relief the headache was back with vengeance as was the nausea.
My youngest brother (a nurse) took me to get the scan on the Friday afternoon. I went in had the scan done and then we waited for the films and report so I could take them with me to see my GP on Monday. After a while I was called into the back room by one of the radiologists, my brother came with me. The radiologist pointed to a mass on the scan and said “I don’t want to frighten you but do you see that? It needs to come out or you are going to die.” I thanked him for his honesty, collected my scans and report and my brother took me home.
That weekend we broke the news to our children, at that stage our boys were 6 and 9 years old, the girls were 13years old. It isn’t an easy subject to discuss ever let alone with your children. By the end of the weekend my husband and I had arranged my will, my funeral plan, put an advanced health directive in place and organised a power of attorney should things go terribly wrong. I’d have to say this was probably one of the most challenging weekends of my life.
Monday morning arrived, the children went to school, my husband and I went off, scans in hand to see my GP. She read the report and then faxed it through to a neurosurgeon while we were there. She gave me a prescription for some pain medication and told me to go home and rest. She said that the neurosurgeons secretary would phone and make and appointment for me to see him. So much relieved we headed home.
When we arrived at home I checked the message bank on the phone to discover three messages from the neurosurgeons secretary asking to call back, the last said to head straight to the hospital that a booking had already been made for me and when I arrived at reception they would know where to send me. Terror struck! We phoned around to organise picking the children up from school and looking after them til my husband could get back from the hospital. My husband called in to work and told them what was happening and that he wasn’t sure when he’d be able to come back in. We packed not knowing what was needed and headed for the hospital.
Until that point things had been academic. It was all pictures and words and very clinical and unreal. Suddenly this was ME and MY BRAIN and MY LIFE. The big panic occurring in the medical fraternity was that this had not shown up on my scans in 1999 or 2000. The sudden violent onset of symptoms and appearance of my “brain lump” had caused great concern.
After some initial confusion I was settled into a room and informed by a nurse that they were not sure if I would be going into surgery immediately or if it would be the following morning. Again panic gripped me. I hadn’t even laid eyes on this neurosurgeon yet! Then they took me down for and MRI to confirm diagnosis. We then discovered I was claustrophobic and had to have an anaesthetist come down and sedate me for the hour and a half they spent with me in the “tube”. After all of that, they decided they couldn’t find it anymore. The neurosurgeon came and told me some time later that he could not see it on the MRI and that they had even compared skull bumps and dents to make sure that the CT was in fact mine. I was then passed on to a neurologist to treat me for an “extreme migraine event”. I spent two weeks in hospital trialling medications until we found something that would even try to help with the pain I was in.
When I left the hospital I was on injectable medication which was costing in excess of $300 a shot (two shots per script) was not covered by the health service and consequently I was using it far less often than I needed to. So began the “migraine” theory. I continued to do the community work I was doing and sing and write music.
We were playing at a festival some many months later when I had another odd episode. I had been in pretty severe pain after playing our set so I had given myself an injection and gone to sleep in our tent. The next day I was still in excruciating pain so I went to see a friend of ours who was on site and happens to be a professor of oncology. He gave me another shot and sent me to sleep in off in the bedroom of the house. When I woke up I could not remember how to open the door. It was a regular door knob, nothing complicated or fancy but I could not figure it out at all. I was trapped in there til he came in to check on me and found me in a right state!
He made an appointment for me to see him at the hospital the following week. He took me off the injectable medication and moved me on to some opiate pain medication. Over the next few months I had to reteach myself how to do things and how to get into a routine. I had post it notes all over the house reminding me to do things like brush me hair, wash my face, have a shower, and eat. This was as a result of the episode I had not from the opiates. My GP continued to prescribe the opiates and time progressed as did my pain so did the quantity of pain killers.
After nine months of opiate prescription for pain management, I was sent to the pain clinic. It is a fantastic program for people with chronic pain. However, it’s not really terrible effective when the underlying cause of the pain is not accepted. They did get me off the opiates and for that I am eternally thankful. I did not enjoy a single minute of the opiate period, I was allergic to the medication I was on and was prescribed a bunch of other things to counteract the side effects. When I left the hospital (Pain clinic) after two weeks my medication had been completely changed and reassessed. I had been referred to another neurologist at the hospital and had seen a handful of different specialist at the hospital.
The psychosomatic theory was beginning to be bandied around after the pain clinic due to report of the psychiatrist there who decided that my pain was psychosomatic, despite the psychologist and all other specialists report contradicting him. The new neurologist didn’t seen to be at all interested in finding out what was causing the problem, only band aid fixes.
At one point I went to see him with swelling at the base of my skull which was causing me to pass out as well as having violent nausea, and visual disturbances. He poked around at the back of my head til I threw up on his shoes and then sent me home. At a later appointment he prescribed a drug for me which, if I had taken it in the does he had prescribed, would have been fatal. I didn’t go back to see him after that.
I went through a few different neurosurgeons and neurologist over the years. I had varying assessments from “I wouldn’t do the surgery unless you were in a coma” to “It’s psychosomatic you should really stop wasting everyone’s time”. I continued to see my GP, we managed to get things to a point were I could mostly function the majority of days in a week. I was on a disability pension, could not work, so days I couldn’t make it out of bed.
Towards the end of this 8 year period my mother was diagnosed with lung cancer, we spent as much quality time as we could with her. Towards the end of her time I spent more and more tie helping her and my father. At the end I held her hand and my fathers as she passed away and then brought my father home with me. He lived with us for 18 moths til he was ready to move into his new home. Through this time I put off appointments and scans so I wouldn’t worry my parents, they had enough to worry about already.
Then the seizures started. I was cleaning out the pool filter and then the next thing I knew I was laying on the side of the pool about to fall in. Another time I was out shopping with a friend and grabbed a chair just as I was about to fall. Another time I was in the pool and started to go as I was climbing out. Things were getting progressively worse and I knew it. I could feel my time was running out and I was running out of energy to fight this.
I was talking to a friend of mine on the internet. He is in Perth and told me about an amazing neurosurgeon in Sydney who takes on cases most others won’t touch. He suggested I get in touch and send my scans down and see what he says. So I did. I sent and email first, explained the situation and waited. Within a few days I had a replay asking to send down all my scans and a reply paid envelope. I lugged my scans to the post office and sent them off. I waited some more. Then there was another email. He recommended surgery but wanted to see me in person could I make an appointment! So I made an appointment, my husband and I made arrangements for our youngest son, now the only one at home, and made the trek to see the amazing neurosurgeon.
I was petrified. I was hoping against hope that he would say yes, that he would do the surgery. I also knew for my previous experience that I had a long list of others who had said no. He was my last hope. We went into the appointment and met with one of his colleges initially who went through some things with us and then he came in after a while and said, “I can do it tomorrow or Wednesday, or you can come back in February because I have January off, you don’t have to answer now, go have a cuppa and think about it”. I burst into tears there and then. My life wasn’t over! I had hope back!
We decided to do the surgery in February, that way I could get Christmas out of the way, get out son settled back in school and my husband could arrange to have the time off that we would need to be interstate post op. It was all happening. Christmas came and went. I got our son’s school uniforms and books ready to go. Then the 2010/2011 floods hit Queensland. We had my brother and his wife stay with us while their house was in the flood zone. My youngest brother was still working for a hospital so he was working extra shifts and my sister in law was working for council so we had my nephew for a day or so while they were helping out. Luckily it didn’t effect out route out to New South Wales for surgery, though parts of NSW were also heavily flooded.
We stayed with some amazing friends on the coast on the way down and arrived at our apartment which would be home for the next two weeks the day before surgery. We went into the hospital to get all the pre op paperwork, scans, and blood work done and then headed back to our apartment for our last night together before surgery. The anaesthetist rang and gave me some last minute instructions and told me in detail what he would be doing.
The next morning I choked down the remaining medication I was required to take with the thimble of water I was allowed to swallow and we headed into the hospital. We parked the car and headed up to sign the last lot of paperwork. Then it was time to put on the very attractive anti DVT stocking, backless gown and wait til it was my turn.
I kissed my husband goodbye and was wheeled down to theatre where the lovely anaesthetist started prepping me for surgery. He was having a terrible time trying to get lines in so he told me he was just going to knock me out and do it once I was out so it would be less traumatic for me. I don’t remember much after that til I was back in the HDU.
I have very little visual memory of my time in the hospital. Most of what I do have is from photographs my husband took while I was there. There rest is audio memory and not terribly reliable. My surgery took longer than expected. They did remove my tumour but in the process I had a bleed which caused some damage to my memory.
I’m very fuzzy on the early days and months after surgery and unsure of some things more recently. However, I am tumour free. I have some epilepsy from the scaring which is apparently quite common with brain surgery and a very small price to pay to have my life back. It is a whole new world. I kept myself sane and focused through some of the worst day’s pre op with my photography and post op it has helped me to remember.
I am not the same person I was before I was ill; I am not the same person I was for the 8 years I was ill. I am a new version of me. A better, healthier, happier version of me and I am determined to be the best I can be.
This is the best MRI report I have ever had and I cherish it!
"The slender surgical tract traversing the right frontal lobe is demonstrated and leads to the position of the previously present mass. This can no longer be appreciated and appears to have been fully resected. The calibre of the lateral, third and fourth venticles is normal. There is no pathological enhancement or mass lesion. The dural venous sinuses appear normal. There is no obvious arterial abnormality. No white matter lesions are evident."