Update, 10 months post-op

December 9, 2009

My 10 month anniversary flew by so fast I didn’t even notice – in fact a fellow Meningioma blogger had to remind me – thanks Lesly!

On the 28th Nov, my actual anniversary, I was preparing to head to NYC to direct a photoshoot for one of my clients. That pretty much says it all, I am back on my game at work leading a huge project and enjoying not having any health issues holding me back.

It’s been a turbulent year though, and I still struggle with my sense of perspective at work. Bizarrely I care WAY too much about it. You’d think I’d have a healthy sense of “this isn’t brain surgery”, but apparently not. Oh well, let’s just call it work in progress!

I had a follow-up with my neurologist last month and there is no sign of tumour regrowth! There is also no sign of my sense of smell, even though I still have one olfactory tract left. More and more I realise that I don’t taste much of my food. I rely on my memory of food tastes, and texture and colour are everything. When I taste something new I often have no idea what it is (this happened the other day). Not because I couldn’t place the flavour, but because I just couldn’t taste anything! So now I accept it, I have no sense of smell and I can’t taste much either.

My next surgical follow-up is in April 2010, and so far everything is good 🙂

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So my follow-up with my surgeon on April 2nd, over 2 months after my surgery. Hey, lets do a craniotomy, now shoo shoo off into the world! To be honest though, it has all been absolutely fine and I haven’t needed to see a doctor asides from having my staples removed. 

I can finally get all my questions answered, GPs really don’t see (m)any brain surgery patients so can’t really answer anything with certainty…

  • How is my brain, my cerebral edema, my skull, my incision?
  • Am I officially 100% tumour free, and was it definitely WHO Grade 1?
  • Is the gaping hole in the middle of my head filled with brain again? Lets see that CT!
  • Give me a time-line on this no-smell thing! Plus, the persistent chemical smell is getting really really boring. 
  • When will the large areas on my head that have no feeling, sort out the nerve damage? When my head gets itchy, I can’t feel anything when I scratch. Its driving me bonkers!
  • Do I still have to sleep on a 30 degree angle? Your nurses put the fear of god in me when it comes to head drainage! I’d really like to go back to a single pillow.
  • When can I exercise again? More than walking that is, I’m talking getting back to spinning and running here. 
  • When can I ride a bike, or more specifically when is it ‘safe’ for me to fall off a bike?Will it ever be safe?  I love my little Dahon, and hate the TTC.
  • When can I drink tea/caffeine again, and alcohol… when can I have a lovely glass of red again? Mmmmm Cabernet Sauvignon!
  • When can I fly? Life owes me that Parisian honeymoon that we had to cancel.
  • And I know neurosurgeons don’t care about vanity, but I’d like to know if  I will always have a dent in my head, and when I can have a hair cut, and use styling products. 
  • When will I be able to go back to work? Right now I can’t even concentrate through a 2hr lecture and be able to function afterwards.

There will be many more questions by April…

So today is my last day at work for a while. I am not desperate to get out of work like I might be when heading away on vacation, today means that surgery is only days away. I used to count the time in weeks, now I am down to mere days. The waiting is excruciating, and while I am dreading walking into that hospital, I just want it to be over.

In less than a week I can no longer say, “I have a brain tumour, what the fuck is YOUR problem?” I will then be able to say, “What the fuck are you staring at? Never seen a craniotomy scar before?” I can’t wait to say that to the first person whose gaze lingers on my head for too long. I hope I have a friend with me who I can laugh hysterically afterwards. 

Sorry about my profanities. The number of swear words I use has a direct correlation to the number of days left before surgery. Fuckedy, fuck fuck.