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.

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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.” ūüôā

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 ūüėČ

Recovery by numbers

April 22, 2009

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.

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.

Incredible.

Life is amazing.

rockymountainsoap

I am on a constant look out for all natural products. Being back in Alberta this week I rediscovered Rocky Mountain Soap Company. How did I forget about them, I always used to drop into their store every time I went to Banff! Their products are 100% natural, (not in a hippy-dippy inaccessible way) and give a list of ingredients they feel we all need to avoid. 

They have an online store so now all us displaced Albertans can still buy their products, plus many vendors across Canada who sell select products.