Brigitte's Story of finding support

Brigitte's Story of finding support
I was first diagnosed in 2010. I had symptoms of extreme pressure and pain, my sight had deteriorated, I was very nauseous and dizzy. Once the MRI was reviewed, my GP made some calls and told me that I was to go directly to the ER department at University Hospital in London, that they were awaiting my arrival for surgery. The ophthalmologist that had seen me the day beforehand thought that I was showing symptoms of MS (Optic Neuritis). When my GP was explaining things on the phone to me, she said: "The good news is - you don't have MS. The bad news is - that you have a brain tumour."  And so, my journey began.
 
I was a single Mom, with four beautiful kids. I received this call and it seemed I had to make sense of my life within a second. I felt that this couldn't be happening, my kids needed me, and there was no one else... I attempted to gather some things and tried to explain things to my kids. I was also extremely ill, could barely stand and couldn't see properly at all. The hardest day of my life was leaving all four of my kids in the driveway that day as I left for the hospital. My heart felt as though it was torn right out of my chest. The hurt was so bad.  
 
Once I arrived at the hospital, I was given dexamethasone right away which really seemed to help with the pain and swelling. It seemed like my miracle drug at the time, little did I know that it would end up doing damage at the same time. Friday, June 11, 2010, the day of my 40th birthday, was the day of my first surgery to try and get rid of this tumour that had flipped my life inside out SO quickly! 
 
I was in the hospital for a week. Upon discharge, I have to say that I was surprised once I was home as to how little information I was given about my recovery, follow-up and what to expect. I healed as well as could be expected I suppose, except for the fact that my head seemed to remain painful for quite some time. The following year, I returned to see the neurosurgeon that had done my surgery as I seemed to have holes in my head along with two screws which really hurt and seemed to be protruding from my head. I had cranioplasty surgery in attempt to put my head back together. The surgeon added additional hardware along with patching the holes up with acrylic. Over the next year, my head didn't seem to feel a whole lot better. I began to do some research and found a brilliant plastic surgeon that did reconstructive skull work. He was from Sunnybrook. He had me do a high definition CT scan before seeing him so that he could have an idea as to what he was dealing with. Upon seeing me, he explained that he had never seen what was put in my head before. He explained that he would need to bring a neurosurgeon on board with the surgery as he would be exposing the brain. I was happy to be having my head fixed up properly once and for all. I had my appointment booked with the neurosurgeon at Sunnybrook that he would be working with. Upon reviewing my CT scan, he began to ask questions and then told me (as if I knew) that the tumour was back. I was in shock. I hadn't expected this at all. In January 2013, I had my third surgery including having the bone flap removed and an acrylic implant put in its place. This neurosurgeon explained to me that the way that he did the surgery, that it wouldn't return. Well, that wasn't the case...
 
The following year, I never seemed to bounce back entirely and thought perhaps it was just because of the surgeries and that perhaps I'd never be 100% and was ok with that. After all, I was alive and well and very happy with that fact! I did seem to have pressure building up in my head and decided to ask my GP for an MRI. She called me with the results right away to let me know that I had recurrence again and this time, there were two masses. One more of a cystic component, whereas the other was a solid mass. I suppose that I forgot to mention that I have craniopharyngioma. Part of the tumour is attached to the optic nerve as well as the pituitary stalk. We found another neurosurgeon that came highly recommended for these types of tumours at Toronto Western. My GP put me on dexamethasone right away and I went in to see the neurosurgeon. He felt that another surgery would be too dangerous along with the fact that the surgeries were not very effective to date in my case. He sent me to Princess Margaret where I met with neuro oncology there and began six weeks of radiation treatment. The team at Princess Margaret were absolutely outstanding! I am still being followed by them.  
 
At this point, I do not have any pituitary function anymore. I find that this has been one of the biggest obstacles to date as it has changed much of my emotional and physical well-being. I rely on steroids and other medication every day now and will for the rest of my life. 
 
Over the last eight months or so, I began to feel different symptoms from the opposite side of my head (nonsurgical side). I finally attempted to fly for the first time in years and it didn't go well. I thought my head would explode. I mentioned these symptoms to my oncologists that follow me at Princess Margaret. They sent me for a different MRI and they noticed something within a region around my mastoid bone. I was then referred to a neuro ENT. He had me go for a high definition CT and it was revealed that I now also have a mass near the carotid artery which is causing the pulsing in my head along with the added pressure on that side. I am currently waiting to see another neurosurgeon that comes highly recommended that deals with tumours within this region. And so, the journey continues.... this new tumour is a completely different type as well.
 
Before I became sick again this time, I had actually begun the process in completing the paperwork to volunteer for the Brain Tumour Foundation of Canada. I have never participated in the Brain Tumour Walk either and am thrilled to be doing so this year. I always kept quiet about my condition as I didn't want everyone to know. Once I decided to do the Walk and reached out to people to join us, the support was amazing!  
Brigitte, we cannot wait to see you, and your fans, at the Guelph Brain Tumour Walk in 2017. Thank you for joining the movement to end brain tumours. The movement is stronger because of you. 

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