I don’t know why it took me so long to find The Brain Tumour Foundation of Canada, but I am glad I finally did. I have a feeling my Dad sent me their link a while ago, but as these brain things go I clearly didn’t retain it!

Brain Tumour Foundation of Canada is a national, not-for-profit organization dedicated to reaching every person in Canada affected by a brain tumour with support, education and information, and to funding brain tumour research. 
Every year, we help thousands of Canadians affected by brain tumours find emotional support and comfort while gaining a better understanding and knowledge of their disease.

“Brain Tumour Foundation of Canada is a national, not-for-profit organization dedicated to reaching every person in Canada affected by a brain tumour with support, education and information, and to funding brain tumour research. 

Every year, we help thousands of Canadians affected by brain tumours find emotional support and comfort while gaining a better understanding and knowledge of their disease.”

It is estimated that 55,000 people in Canada are living with a brain tumour, 10,000 newly diagnosed each year, that is over 27 people a day. Watch their short video on the prevalence of brain tumours in Canada. 

I like being able to read info where the word ‘tumour’ is spelt correctly 😉


Back to it

April 13, 2009

When I went for my first CT scan that eventually led to my diagnosis, I had lived in Toronto for less than 3 months. I still had my Alberta health card, and had only just moved into my apartment. Frankly there is nothing like finding out you have a brain tumour when you are on the other side of the country from your best friends and family. Add to that the fact that I was grounded and could not fly to see them.

It was just over a week ago now that the neurosurgeon gave me the all clear saying I could get back to life as normal. No restrictions.

I can now drink caffeine and alcohol, exercise, drive, fly, and work again.

The day after receiving the good news I booked flights to Alberta and left 2 days later. It was such a relief to be able to get away after being stuck here for 4 months. Now I hate flying as it is, but flying for the first time after brain surgery gave me a whole new level of anxiety. 

My head was fine however, and for once I didn’t throw up (yes, I’m “that” person). The titanium clips in my head didn’t even set off the machines at security screening.

Caffeine I have passed on… for now at least. I stopped craving it after about 4 weeks so I am going to attempt life without it. I took my Dad’s C350 out for a spin, drank wine, and arranged to be back at work part time in 2 weeks.

Today I checked my final conquest off my list. A successful 4km run. It was perhaps the shortest run I have done in years, but I’ll take it, all things considered. I am glad to get the first run under my belt so I can now start rebuilding my fitness without trepidation. People and busy places can make me tired, running it seems, does not. 

When I look back it is incredible to think about what has happened in the past few months. The unlikelihood of it all, the fact it happened to ME. The fact I happened to move to a city with a top medical community, that I found out I had a brain tumour of all things, that it was successfully removed… and then experienced (in the words of my surgeon) a remarkable recovery. Here I am able to tell the story.


Life is amazing.

Before surgery Meningioma, bilateral frontal edema.


Day after surgery Pneumocephalus (air in the cranial cavity), hemorrhage, bilateral frontal edema stable. *Slightly different slice.


Day after surgery Lots of staples, and 3 plates/screws.


Today 3 plates/screws


Craniotomy’s are things of horror movies, or TV shows like Grey’s Anatomy. It never crosses our mind that these things happen in real life, but they do. Many times a day in the city that you live in, whether planned like mine, or unexpectedly due to an accident for example… they are happening.

This is a series of clear diagrams and annotations from the Mayfield Clinic that shows how a craniotomy is performed (I take no credit for the information below, it belongs to The Mayfield Clinic). My neurosurgeon explained this to my husband and I verbally, but this is exactly the picture that formed in my head. It is good to be aware of all the layers of your head that need to heal afterwards so that you can truly respect the recovery time needed… and it’s a while considering you can look perfectly normal on the outside.


Figure 1. Craniotomies are often named for the bone being removed. Some common craniotomies include frontotemporal, parietal, temporal, and suboccipital.


Figure 2. The patient’s head is placed in a three-pin Mayfield skull clamp. The clamp attaches to the operative table and holds the head absolutely still during delicate brain surgery. The skin incision is usually made behind the hairline (dashed line).


Figure 3. A craniotomy is cut with a special saw called a craniotome. The bone flap is removed to reveal the protective covering of the brain called the dura.


Figure 4. The dura is opened and folded back to expose the brain.


Figure 5. The bone flap is replaced and secured to the skull with tiny plates and screws.


I blogged about early detection of brain tumours a while ago. Turns out the Brain Tumor Foundation has made this a reality through the Road to Early Detection initiative. 

“Road to Early Detection is an initiative of The Brain Tumor Foundation aimed at broadening public awareness about brain tumors and the urgent need for preventative brain scans. With the introduction of this campaign, widespread early detection of brain tumors will be available to everyone.”

“The launch of the Mobile MRI Unit in November 2008 marked the start of the first-ever national campaign promoting early detection of brain tumors. Road to Early Detection focuses on outreach to communities – particularly for those under-served in the five boroughs of New York.

The Mobile MRI Unit will continue to set up in places where people work, study and live in order to make brain scans, and thereby early detection, accessible and cost free. Dr. Patrick J. Kelly, Founder and President of The Brain Tumor Foundation, maintains, “The only way to detect a tumor early is through the use of MRI brain scans. Regrettably, by the time brain tumors become symptomatic, most are incurable.” In the 4 short months since the Unit has been traveling, several brain tumors as well as MS, Alzheimer’s and other abnormalities have been discovered.

This year more than 300,000 Americans will be diagnosed with brain tumors. About a million are walking around with one and don’t know it – 25,000 of them are in New York City alone. While there are no preventive measures as yet, the impact of brain tumors can be vastly reduced. Detected and treated early – they can be completely eradicated. MRI brain scans are safe, painless, non-invasive, emit no radiation and take only ten minutes. Scans are available by appointment only and can be scheduled by calling 877-SCAN-NYC (877-722-6692) or visiting www.roadtoearlydetection.org.

This service is for those who are asymptomatic and in the US. Hopefully this service is sucsessful and the idea spreads North to Canada.

Vitamins galore

March 13, 2009


These are my morning (left) and evening vitamins (right) from my naturopath. I feel goooooood on them! Fish oils, vitamin C, & B, probiotics, plus a general antioxidant (vitamin A, C, E, magnesium, zinc, selenium). I also take vitamin D drops. 

My mix of supplements and their dose changes about once a month. I was off the Fish Oils for 5 weeks after surgery (they are blood thinners) but am glad to be back on them, they make you feel seriously good!

Hospital: Part 2

March 13, 2009

I woke up after my craniotomy in neuro ICU. My husband was there, and at the ready. I have no idea how long he’d been waiting, but he went and got me ice chips thank god… I was thirstier than I had ever experienced before. 

Taking stock, I was surrounded by bleeping machines. I had a clump of wires coming over my shoulder, each one sticking to a sticky pad monitoring my heart rate. There was a blood pressure cuff, that took my blood pressure at the most inopportune moments. Then there was the tubes… I had an IV in the top of my left hand, one in my left wrist, one in my right wrist, and a central line stitched into my jugular in my neck. They were all attached to one kind of drug or another, Decadron, Dilantin, Morphine…

Next there was the plethora of things around my head. Most noticeably, there was a serious bandage around it. Not just any kind of bandage, but a compression bandage that came right down to my eyebrows and that covered my ears. It was so tight that it was pushing my eyebrows down so I could barely open my eyes! Luckily for me, a nurse came and chopped a bit off so I could see properly again.

The bandage hid a variety of sins. Of course there were the 35 odd staples riddled across my head. Then there was the wire that went into a hole in my scalp and plugged into a monitor that measured inter-cranial pressure, plus the tube that went into yet another hole and drained excess fluid. Couldn’t feel either of them, and when I found out they were there I really didn’t care, they had major jobs to do.

I know it is hard to believe, but my head never hurt! I had a dose or two of morphine because of pain in my neck. So it stays absolutely still, they put your head in a vice-like clamp, and in a totally unnatural position during surgery. My neck was SO stiff I could never have imagined it in my wildest dreams. It was all fine when my head lay on its left hand side, but try and straighten it? Holy crap! I had to support my neck with my hands while I moved my head with it’s heavy bandage.

Neuro ICU was a safe place to be, but not one where you get any sleep! Every hour, on the hour your dedicated nurse came by and did neurological tests. If you are lucky enough to be asleep, you are woken up and lights are flashed in your eyes. You are told to put your arms in the air, IV lines flailing all over the place, and the turn your palms to the ceiling. Next you have to move your legs and push your feet against the nurses hands. Did I mention, every hour on the hour? Then you hear other patients going through the same ritual. I heard a lot of “Lawrence, Lawrence, open your eyes for me please” that night. He didn’t seem to be doing so well. 

Everytime a nurse came by to do these checks I asked for yet more water, also asked their name, how long they’d worked in neuro ICU, what time it was, and generally got chatty much to their annoyance. Hey, if you are going to wake me up every hour I expect a conversation out of it!

In the morning my neurosurgeon and his interns came by. About 6 medical students in their neuro rotation stood in an arc around the foot of my bed. Dr Muller proceeded to tell them that “This is is the lady who presented with the olfactory grove meningioma and Foster Kennedy Syndrome. Forget the interns, I was the one asking the questions, “What syndrome? What’s that? You never said anything about that!” He responded, and I promptly forgot what he said. 

The time before 11am and visiting hours begins is BUSY for the patients! Next came my surgeon’s senior resident, and his interns. Shortly thereafter came another nurse who cut off my bandage with scissors. Ahhhhh, the relief, my head no long weighed a tonne!

Then came yet another neurosurgeon, with another medical looking person in tow. He removed the two tubes from my head. There was quite a lot of tube hidden in my head, and while it didn’t hurt when he pulled them out, it felt gross to feel it moving under my scalp! He had to really yank to get them out. Ewww. Then he proceeded to stitch up the remaining holes… no local anesthetic, just the needle and thread. I laughed and used the F word (not the food one for Gordon Ramsay fans) intermittently until he was done.

At some point someone brought breakfast, and someone else came by cleaning the floor… he tested my reactions by nearly pushing my table into my face with his mop. He got the evil eye from me, thats all I can say. 

Next came a social worker, then two physiotherapists. They wanted to get me out of bed. So, maneuvering with all my tubes I managed to stand up. Much to the physios chagrin however, a nurse arrived with a wheel chair to take me for a CT scan. Phew, I got to sit down again and was whisked away downstairs. Uuuuugh, but how is it possible to get motion sickness from a wheel chair?! Anesthetic and steroids thats how. That nurse got strict instructions from me to slow down, especially when cornering! 

Once back in neuro ICU, a nurse came by and announced I was moving to the ward. All the IVs were removed bar the one in my hand (plugged and left for emergencies), including the horse needle in my neck, and was wheeled off to the neuro and trauma ward. No monitoring machines anymore, I was all on my own less than 24 hours after surgery.

The physiotherapist found me again and I had to go for a walk down the hall and up some stairs. I felt thoroughly gross afterwards and didn’t eat for the rest of the day. Then I felt icky from not eating, then from having to get out of bed… the viscious circle continued. I think I lost 5lbs in those few days.

All this before 11am!

The next day my surgeons came by and announced they wanted to send me home. Yes, one day after surgery. I was still feeling like crap from the anesthetic so managed to get myself one more night in hospital. Never thought I would be asking for that!

Overall my stay in hospital was as good as it could have been, considering I had a craniotomy. Every single person I came into contact with at St. Michael’s Hospital was polite and friendly, and the whole place was so efficient.

For those of you who have a date with the surgeon like I did, I really didn’t feel anywhere near as bad as I expected afterwards. It was terrifying beforehand, and it wasn’t fun afterwards, but it really wasn’t that bad at all! Recovery on the other hand requires much time, patience, and a level of self awareness that allows you to recognise (and work on) the subtle differences your brain presents you with on a day to day basis.