Il y a quelque chose dans ma tête…

When we were in Paris recently, my husband and I decided to go back to the Eiffel Tower where we were engaged. Wouldn’t you know, they now have metal detectors before you can go up and see the view. I walk through and “beeeeep”! For a split second I forgot and tapped my pockets looking for change, then it hit me. My head! “Euuuhhh, Il y a quelque chose dans ma tête…” as I point frantically at my head. The security guard looked at me like I was crazy… and thankfully took pity and let me go through.

A trip to the neurophysiology department

Last week I had an EEG (electroencephalogram) which is a test that detects abnormalities in the electrical activity of the brain. It is the first step in trying to work out the cause of my olfactory hallucinations. If it is due to seizures, it will show up in this test, and seizures mean I might have to go back on anti-convulsants, which I DO NOT want to do. I categorically hate drugs and how they make me feel.

It’s a bizarre test, that doesn’t hurt or have any side effects but it’s boring and time consuming. When lying on a bed, the technician applied 30 electrodes to my head using a huge amount of goopy paste to make them stick. They were all through my scalp, on my forehead and temples, and under my chin. I wanted to take a picture of myself but she woudn’t let me as it is against hospital policy. It would have made for an excellent photo!

During the test you just lie there, and follow instructions to open your eyes, close your eyes, open your eyes, close your eyes, open your eyes, concentrate on a spot on the wall… thrilling I know. Then while your eyes are closed they flash lights at you at an ever increasing rate. This was the most uncomfortable part of the test as normally you would be able to cover your eyes or look away, instead you have to lie motionless and endure. The technician then turned off all the lights and I had to lie there for an exorbitant amount of time – motionless and with with my eyes closed. It was maybe 20 minutes, but could equally have been just 10, all I know was that my head started to itch and I couldn’t do anything about it!

I get the results at the end of October when I next see my neurologist again. Fingers crossed – even though I don’t believe in this, what’d done is done and it’s not in my control to change it.

Update, 6 months post-op

Time flies (and not only when you are having fun), it has been 6 months already. I just got back from my 3 week honeymoon that we had to cancel. It was just what the doctor ordered, and I was able to totally forget about what life has thrown as of late.

I now feel better than ever, better than I ever did before surgery. I continue to try to re-build my fitness and to be honest 3 weeks in France and the UK, and a bottle of wine a day certainly did not help! But walking or cycling everywhere, and with regular spinning sessions, I am still fitter than many people I know, even post brain surgery.  

That feel good vibe can also be attributed to 8 months of a pescetarian diet, and a large daily dosage of omega 3’s, vitamin C, D and B’s. If I run out of any of them, particularly omega 3’s, I really notice it and find myself craving fats. What the brain needs, the brain gets!

I still have no sense of smell and have an EEG in a couple of weeks to make sure my olfactory hallucinations are not seizures. My neurologist does not think this is the case, but it’s good to rule out. We can then move onto other investigations into the cause and potential return of smell into my life.

My next CT and follow up are already booked for April 2010. I am impressed with St. Michael’s Hospital and my doctors, and really feel like I am in safe hands.

Chemical free living update

The more I learn about the chemicals present in our everyday life, the quicker I am changing the products I use. Maybe it’s the fact there is no known cause for meningiomas, maybe its all the time I have spent with my naturopath, or maybe it’s just a sign of the times, but I now read ingredient labels on ALL products I buy. If it doesn’t list it’s ingredients or I cannot understand them, I simply don’t buy it whether that be food, cosmetics or cleaning products.

I wanted to update you on the products I now use. It really has been a long term (and continuing) experiment in finding ones that do the job, that are easily accessible in everyday life, and that are affordable. Here are some previous posts on the topic, “Reducing toxins in your life: cosmetics“, and “Living chemical free without being a hippy…” 

Rocky Mountain Soap Company

Rocky Mountain Soap Company has stores in major cities in Western Canada and also has en excellent online store. I just received an order today complete with a handwritten thank you note. Good for you, and good to you. I love their:

• Handmade soaps* especially Bar None (Unscented for those of us who have no sense of smell), Avalanche, and Mountain Meadows (Favourites from when I DID have a sense of smell).
• Body washes like Mountain Meadows Liquid Castille Hand and Body Wash. I have no idea what it smells like, but my husband says it’s fresh and citrus-like.
• Lip butter*, Peppermint is my favourite because mint is one of those smells I can “sense”.
• Hand & Body lotion* of which my husband likes Alpine on me, so that’s the one I use!

Aubrey Organics

Aubrey Organics can be found in most health food stores, and also have an online store. Not all their products are created equal but I am a fan of their:

• Blue Chamomile shampoo* and conditioner*  (odd consistency but easy to get used to)
• Vegecol & Aloe Facial Cleansing Lotion (odd consistency but easy to get used to)
• Vegecol & AloeAlcohol-Free Facial Toner 
• Rosa Mosqueta Luxurious Hand & Body Lotion (takes a lot of rubbing in)

The Organic Pharmacy

The Organic Pharmacy is a new company I came across when in London the other week. They currently have stores in larger UK cities and Los Angeles plus a decent looking online store. It is higher in price range, although not exorbitant if you usually buy department store brands. From what I read it is quickly building a celebrity following for it’s products, spa services and holistic approach to beauty. I am currently enjoying:

• Lip & Eye Cream*

And am  keen to try:

• Cellular Protection SPF 25
• Carrot Butter Cleanser
• Double Rose Rejuvinating Cream

If you would like to start educating yourself, visit the Cosmetics Database. Enter in your favourite brand or product, or else search for individual ingredients.

Cleaning Products

These are easy to find, and can just as easily be made at home if you want. Tip: a few drops of any essential oil will give anti-bacterial properties. 

• A mixture of white vinegar, sugar and washing up liquid (see below) to catch those pesky fruit flies.
• Martha Stewart’s Home Keeping Handbook for cleaning supply mixes for unusual messes
• Ecover Dishwashing Liquid
• Small Planet Germs Be Gone
• Pink Solution

We now also keep our food in glass containers and not plastic, and use Kleen Canteen water bottles. We also avoid junk food where at all possible, buy all our fruit and veg organic and local where possible, and read labels on packaged goods (and put them back on the shelf a lot of the time). 

* Products in italic are ones that I liked so much they became a permanent part of my life.

Update, 4 months post-op

At the 4 month mark, one of the biggest changes in my life is my perspective. Every day is a gift, something to make the most of. Things that I hummed and ahhhed about in the past I now just do. My tolerance for unhappiness is gone, whatever irks me must be solved. 

Sometimes I stop for a moment, and the realisation hits me that I had brain surgery not so long ago. I don’t know that it is something you can ever truly wrap your head around. You can barely see the scar in my hair now, in fact the only give-away is to the trained eye, and in the form of a scar on my neck from the central line.

My sense of smell has yet to return, but hopefully I can get some more answers when I see my new neurologist in a couple of weeks. *New* neurologist because I was less than impressed with my last one, and didn’t feel like seeing a doctor in the long run whose opinion I simply did not trust (Lesson = shop around for good doctors like you would anything else). My new one is also affiliated with St. Michael’s Hospital which will make co-ordinating him  with my surgeon and records SO much easier.

I am now back at work. I have been lucky to be able to slowly build my hours week by week, starting at just 12 hours to full time by June 1st. It certainly has not been without it’s challenges though, and I really feel it has been an internal personal and professional battle.

One of these personal battles at work has been with my brain of course. It doesn’t want to focus for long, and is easily distracted by the sights and sounds an open plan office brings. I feel anti-social, but putting the headphones on has helped, now if only I could wear blinkers to tackle the peripheral vision!

Then of course there is the exhaustion. Before I was back at work I was able to exercise several times a week, either out on my bike or running. As work hours increase however, my energy for exercise goes down considerably. So I have learnt that I can only increase one thing at a time. Right now, frustrating as my inner-athlete finds it, that has to be work.

I am back spinning at Quad however. I would normally have a pretty defined cross training plan, but I have decided to just go with what feels right. Spinning while tough after such a long break, is where my motivation is taking me. It’s a sport that takes not only takes physical endurance, but mental endurance too. If you are mentally focused and have a clear mind, you can physically achieve so much more (which is why talking during spin class is a big no no). As I already mentioned, my focus isn’t great right now so spinning has double benefits for me. 

I have also started sewing at The Workroom. Much of what I have read about recovery involves flexing that brain and learning how to do new things. It helps get your mind out of the same old patterns. So I have learnt how to use a sewing machine properly and am quickly getting a buzz from making things for myself. 

A major side effect of all this is the need to do something worthwhile, to balance out the industry in which I work. I really need to do some work that gives back and makes a positive difference. So, I am now a volunteer for The Brain Tumour Foundation of Canada in a variety of capacities. They have lots of ideas on how I can help them out, which I am really excited about.  There is no better cause for me than this one where I can combine both my personal and professional experiences.

In a few weeks my husband and I are off on our honeymoon. It was supposed to be Christmas in Paris, but due to my diagnosis and being warned not to fly, we had to cancel. Instead it will be Summer in Paris. Now I am off to make a new purse for the trip

Sensory experiences

As a rather creative child, I would wonder whether everyone else saw colours in the same way as I did, was my yellow the same as theirs, were bananas (my version of) pink to some people, and (my version of) orange to others? My imaginative thought also extended to taste and smell. Do strawberries taste the same to me as someone else? How can people NOT like strawberries, they must taste like smelly cheese to them!

Now as an adult who has lived life with a keen sense of smell, but who has since lost it, I have come to rediscover this line of questioning. Smell really helps to define an experience. I was leaving an underground parking lot with my husband last night and he commented as we walked down the stairs, that it stank like pee. To which I responded, “Really? But it looks quite clean”. I have to rely on other stimuli to tell me the things that smell used to do, and frankly they are not proving to be so reliable.

More and more I get the idea that I am getting completely different sensory experiences than others, especially with these olfactory hallucinations. I was in a workshop listening to a presentation the other day, and my chemical smell was particularly strong (damn that random electrical activity). Afterwards I realised it had totally changed my perception of the place, it changed the way I felt emotionally, and how I behaved.

If my smell ever comes back, I am going to try aromatherapy because I can attest that chemicals make you feel on edge and uncomfortable. Lavender, peppermint, tea tree… mmm sounds lovely.

Photograph your progress

Today I was reviewing all the photos I have been taking during recovery. It’s amazing to see the progression from “normal” person (with a brain tumour), to post-op pictures, right through to today.

I looked so happy with staples crossing my head, and am even happier now to be able to show off my dent, I pretty much force people to feel the metal pins on my forehead. Hey, if you have war wounds you should flaunt them!

So, if you are facing the same journey as I did try and take photos throughout. On a day you are feeling sorry for yourself you can look back and remind yourself how freakin’ tough your are, and how far you’ve come.

I found this prophetic photo today, it must have been taken about a year ago not long before I got married. If you haven’t worked it out I am looking directly at the site of my craniotomy.

Final results on paper

This week I received copies of my surgery notes, they are fascinating. I wish I knew more so I could understand them better. It’s long, but this is the operative procedure summary:

“BrainLAB neuronavigation, right frontotemporal pterional craniotomy, subtemporal decompression, tumour removal, duraplasty, and ICP monitor.”

My most recent CT scan notes gloriously state, “Resolution of postoperative changes and edema, with no evidence of residual or recurrent mass lesion identified.”

Brain Tumour Foundation of Canada

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

Recovery by numbers

People often ask what I have been doing with all my time off work. Well, recovery from major surgery takes time and these are the kind of numbers that get you there…

1 Meningioma
1 Craniotomy
4 CT Scans
1 MRI
1 ECG
1 Chest x-ray
3 GPs
1 Neurosurgeon
1 Senior Neurosurgical Resident
5+ Interns/Residents (doctors in training)
3 Anesthestists
10+ Nurses
2 Neurologists
1 Social Worker
1 Physiotherapist
1 Pharmacist
10 Receptionists 
6 Imaging Technicians
3 Film library people
1 Naturopath
1 Osteopath
1 Cleaner
4 hours of surgery
1 Night in Neuro ICU
2.5 days in hospital
35 Staples
5 Stitches
3 Titanium plates
6 Titanium screws
3  Imaginary smells
3 Prescribed drugs
2 Over the counter drugs
7+ Vitamins/Supplements 
4 Homeopathic remedies
1 Complete diet overhaul
1 Husband
1 Dog
3 House guests
2 Provincial health cards
3 Health Benefits case workers
1 Dent
2 Boxes Purdey’s Chocolates
73+ Blog post
112+ Blog comments
4,500+ Blog hits (not bad going for a measly blog about my brain)
13 weeks off work

Yes, that’s 40+ medical professionals I have seen in the last 4 months. Those are the people I remember through my drug induced haze, which means there must be a good 10 more that I don’t recall.

What should this list tell you? It is essential to know how to navigate the health system.