Monday, November 5, 2012

The 5th Ingredient

I had my 8 week post-op follow up with my surgeon today, and he was so upset to hear that I have been having so much pain already. He said if it wasn't completely crazy to open me up every 8 weeks, scrape the tumour out, and sew me back up again, then he'd do it as it gave me a few weeks relief. But as that is most definitely not an option, we need some way to manage my pain.

By the end of November I should have an appointment time for my 3 month post-op MRI and then my oncologist will decide if I qualify for chemo. Hopefully with some treatment, my tumour will shrink enough that I have pain relief. But while we wait for treatment, and in the long term, there needs to be some sort of a plan in place for pain.

So in comes the 5th 'ingredient' - a 5th doctor added to my team. I've been referred to a chronic pain doctor - initially to hopefully start me on some sort of a regime that keeps my pain under control enough that it doesn't affect me day to day, and allows me to sleep well each night while we figure out the next step in treatment, but also to work with my long term because - as my surgeon said - we need to face the facts that this condition has no cure, and my pain is going to be ongoing to various degrees for the rest of my life. 

Seeing the words 'no cure' in the referral to my new pain doctor was a little's something I know, but seeing it in black and white just makes it so real. This tumour isn't going anywhere. 

Fingers crossed some clever scientist makes a break through soon!

In the meantime, I have an appointment with Dr-Number-5 Friday next week, so we will see what she has to say - I have high hopes that she can help make a huge difference to my day-to-day life!

Kylie xoxo

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