About

20141202_131931Welcome!

This blog is my attempt to do four things:
– understand and articulate my journey with chordoma;
– share my progress with my friends and family;
– create greater awareness of chordoma;
– create a network of support for those living with chordoma, and their family and friends.
I hope that you enjoy it and that it helps you in some way.

Chordoma is a rare cancer of the spine and skull. My experience with this poorly understood cancer was through the discovery of a tumor on my lumbar vertebrae (L5) that was removed in July 2014 by an incredibly gifted health care team in Vancouver. I live in a beautiful city in the interior of British Columbia, Canada, nestled on a lake in the middle of orchards, vineyards and wineries. I love Kelowna, however, it doesn’t offer all of the specialized care that I needed, so in addition to traveling to Vancouver for my surgery, I spent the fall of 2014 in Seattle, undergoing radiation therapy at the Seattle Cancer Care Alliance Proton Therapy Center and at the University of Washington Medical Center. I returned to Kelowna in January 2015 and am recovering and enjoying my new life.

Please contact me if there are topics you would like me to write about, if you are looking for additional information on chordoma (I don’t have all the answers but I would like this blog to become a forum for information on the disease), or if you would just like to comment on what I have written so far.

Other than managing life with/after this cancer, I am a healthy husband, father, son and regular guy. I have a great life and my journey with chordoma has not changed that!
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29 thoughts on “About”

  1. I am definitely more interested in a disease I had never heard of, so thank you. And here are my tips:
    Paragraph one would draw the reader’s attention if you tried bullet points for the reasons Consider making your points more succinct and parallel. For example,

    “Share my struggle and my victory over chordoma” would match your well-written 2nd point.
    And your well-written third point (without the “thirdly”) would match the fourth point if you wrote To create a network of support for those struggling with chordoma and their family and friends.

    This type of paragraph has the effect of keeping everything neat and tidy (most readers need the structure to engage) and giving a lot of information in short, little bursts (most readers appreciate short and to the point so they know right away if they like it).

    I wish your blog well. And more than that, I wish you well. I have read your other posts and you do have the gift of a writer, you write a good narrative. I look forward to following you on your journey and your subsequent VICTORY!

    I wish you peace, ~victoria

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  3. I’ve never heard of Chordoma before either, and it sounds brutal. Your great attitude will stand you in good stead through the journey ahead. I’m so glad you got a great surgeon to take your tumour out. I hope you get a great radiotherapy specialist and radiotherapy techs, too. (That therapy isn’t available in BC? How far do you have to go to get it?)

    I agree that bullet points up top will draw the reader’s eye through the list. Props for including “more info” links, too. With some minor tweaks, you have a terrific About page.

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    • Thank you so much. I appreciate the feedback.
      With respect to radiation, when this started it looked like I would have to go to Loma Linda or Boston, however a proton beam machine has recently opened in Seattle and I am trying to access that. I don’t have it too bad though, there are no machines in Great Britain (all their patients travel to Jacksonville, Florida), and none in Australia. Seattle is a reasonable distance for us to travel.
      Thank you for reading my blog and for your comment!

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    • Thank you so much. If not for geography Boston would have been our first choice – Massachusetts General is the research center of excellence for chordoma – and it is a great city. I visited a few years ago and loved it!

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  7. I love that you are living during a time when social media and the internet can play a role in making connections for people who have diseases with others who have the same disease (however rare) for support, suggestions, companionship and maybe just to vent. I have followed http://25pillsaday.wordpress.com/ for a couple of years now, and I think you might find her approach both enlightening and helpful. Blessings!

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  8. Pingback: #FollowFriday – the chordoma episode | from the sticks to the bricks and back again

    • Wow, I don’t even know how to respond to this. I just walked in the door after 13 hours of travel for some xrays and a neurosurgery appointment in Vancouver. I was exhausted, stressed and a little defeated… and then I read this. Thank you so much for your kind words – I really appreciate them.

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  9. You are so amazingly courageous for sharing such a personal struggle online! Wishing you the best in your recovery and keeping up your positive attitude. Love British Columbia! So glad you stopped by my blog so I could get to know you 🙂

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  11. Pingback: Blogiversary!🎈🎈 | 20/20 Hines Sight

  12. My mom was just diagnosed in November 2014 with clival chordoma. In October they did a 7 and a half hour surgey at vancouver general. They told us that it may be an 11 hour surgery so we were quite glad when it was only 7. They removed as much of the tumor as they could without compromising the spine too much. She is now being sent to loma linda California for the proton beam radiation. Shes had to travel a lot with her living up north in Prince george and her oncologist being here in vancouver. I know it’s very hard living with this and I’m glad your keeping such a positive attitude about it. Our thoughts and prayers are with you and yours.

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  13. Also there is a wonderful support group on facebook called chordoma survivors. My mom joined the group when she was diagnosed and everyone on there has been absolutely wonderful. Always there to answer questions and give some encouraging words when needed. I highly recommend joining. They are also amazing with family members of patients who have any questions or concerns. 🙂

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    • Hi Kaylene. thank you for your comments. I am active on the survivors website and have traded some messages with Christine. I would be happy to talk to either of you at any time about my experience, especially with pbt. I know that PG and Kelowna are along way apart but if you are in Vancouver for appointments and I can make it coincide with a follow up I’d be happy to meet for coffee. All the best to both of you – I know she has some concerns about her appointment today.

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