Sunday, July 15, 2018

Commanding my own fleet...so to speak

In North America, they often call this 'being your own quarterback', which means taking over the ultimate directing responsibility yourself.

In my case, my prime oncologist is on vacation this week. As of last week, it seemed that the cancer has spread to more of my bones and I was on more and more painkillers. I hassled my prime oncologist until she agreed to pull some strings and let me see one of her oncologist friend at another hospital to start using radiation to zap some of the bone cancer away. I thought she was going to 'wait till she comes back from her vacation'. I'm the one who is in pain right now! The cancer is not waiting for anyone's vacation! So I'm 'quarterbacking' my own cancer case, working with 5 oncologists in 4 different hospitals. It feels great to be taking charge of my own case, at least it feels like I am writing my own roadmap for this cancer journey for a short period of time. I'm going to see the radio-oncologist next Monday and I'm going to insist on starting radiotherapy right away. I'm also participating in the screening of a new clinical trial at another hospital. I'm keeping track of all these activities with different doctors, making sure that they get sent my latest scans and data so everyone is on the same page. I'm not relying on the doctors themselves to pass on the info amongst themselves.

I'm also working directly with another palliative care doctor for my pain relief.

As much as I love the universal health care system that we have, there is so much bureaucracy that makes the system slow and sluggish. I can imagine that if I was an elderly patient who is not able to keep track of all the appointments, doctors, jargons, trials, etc, and had no full time younger carer to take care of these things for me, what would I do? I would wait until the doctors return from their vacations (people take summer vacations frequently) and perhaps my condition by then would have worsened so much that treatment options would have been limited.

I'm feeling more hopeful now than I was last week. I hope everything will go well this coming week, meaning that I would be able to make a forceful case to the doctors about my cancer care. Wish me luck!

7 comments:

  1. Holding good thoughts for you.

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  2. ALL the luck, Nicky. I like the idea of being in charge -- I know what you mean about the slow and sluggish system. There seems to be no sense of urgency much of the time. Things have to "go through channels" and appointments take forever to arrange. To go further with your "commanding your fleet" comparison, the regular system is like trying to drive a cruise ship around a swimming pool! What you're doing is choosing a flotation device, instead - you have much more maneuverability this way. Go, you!

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    1. Thanks Jenny! I just hope that I am able to convince the doctors to move things along quickly. I hope they don't veto me......

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  3. Push, push, push... squeaky wheel gets the oil, so let them go on holidays but not without giving you what you want...good luck.

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    1. Thanks summer flies! It seems I'm getting my wish! I'm getting radiotherapy starting today for 5 consecutive business days in a row!

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  4. Good for you for being your own quarterback! I was told a long time ago that you have to toot your own horn and I think you are doing that for getting the best health treatment you can. Thoughts and prayers are with you as you continue on your journey to getting better.

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