spinning

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 🙂

Advertisements

Sensory experiences

May 11, 2009

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.

prophecy

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.

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.” 🙂

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 😉