After chordoma, what’s next?

20150421_192724I received the great news that I appear to be chordoma free more than a week ago, and I haven’t really honored it yet.  I thought I would be ecstatic and have a huge celebration.  I am happy, obviously, and very relieved, however it is taking me longer to wrap my head around this than I expected.  I guess I am having a hard time understanding “what’s next?”  I have really just focused on cancer for the past 10 months, on treatment and recovery, and now I need to adjust to my new normal.  I thought that when I was done with this it would be easy to get back to “life”, but that is not proving to be the case.

I am not entirely free of the medical system.  I will get my lymph node biopsy results in May and then in early July I am back at Vancouver General Hospital for another MRI and consultation with my surgeon.  I am still dealing with significant nerve pain issues which I hope to resolve, or at least learn to manage, but in terms of cancer it is just infrequent monitoring.  So, what’s next?

Firstly, I need to find a way to appropriately show my gratitude to the multitude of  friends, family, medical professionals, colleagues and strangers who helped me, treated me, cared for me and supported me.  I am overwhelmed by all of the love and support I received and I need to figure out how to best express this.  One of the ways I have thought of is to pay it forward, so I have begun volunteering with the BC Hospitality Foundation, a charity that provides help to people in the hospitality industry in our province who need short term help due to illness or injury (see the link to the right).  It is a great cause and hopefully I can play a small part in helping others who need support.  I am also quite active in the Chordoma Survivors’ support group, from whom I learned so much and where I am hopeful that my experience might be helpful to others diagnosed with this cancer.

Beyond that, the most important thing I can do is recover well.  I am trying to rest, exercise, meditate and do yoga daily.  I want to use this new lease on life to be the healthiest that I can be. Oh, and I want to go fishing.  For the past few years Stella (my 11 year old) and I have been fishing at lakes in the Okanagan, and last year I wasn’t able to make our annual trip to Beaver Lake Lodge – I want to make that up this year.  I also was introduced to an amazing project called Reel Recovery by a fellow blogger (lbeth1950 – check out her blog full of humour called Nutsrok – see the link on the right).  Reel Recovery organizes fly fishing retreats for cancer survivors.  They take a group of 14 people on a three day trip to fish and talk about recovery.  How cool is that?  I am hoping to attend a retreat in Washington in early fall.

What I DON’T want to do is fall back into unhealthy and stressful habits.  I need to make changes and do meaningful work that both supports us and is sustainable (health wise).  Ten months ago I hadn’t heard of chordoma and had no idea that I even had cancer, now I want to ensure that I hang onto the good that has come from this journey.  I have learned so much about whom I can be and what is important, now I need to put this into practice.   I will start by thanking all of those who made this adventure possible.  Then I will work on making the rest of my journey successful.

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9 thoughts on “After chordoma, what’s next?

  1. Paul,

    My neighbor had cancer 5 years ago. She said the hardest part was the aftermath – what you just wrote about. The aftermath- the clear diagnosis – the ability to move on. How does one move on when their life has been put on hold for so long? I can’t even begin to imagine. It’s been hard for her – even harder than fighting the cancer! In fact, she has said that the most “alive” she has felt was when she was fighting cancer.

    I know you will find your peace. And I have followed you every step of the way.

    Thinking of you.

    An old friend.

    Margot Schnell

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  2. I am so glad for your good news. My daughter is a ten year survivor. I am still grateful everyday. I know you Reel Recovery Retreat will mean the world to you. Can’t wait to hear about it when you get back.

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  3. The relief must be overwhelming. I like your idea of paying if forward. And I like the idea of the fishing trip. Your wife and children probably are also feeling overwhelmed, happy, glad, Are there groups to help them re-adjust to a a life without daily worry about you or maybe I should say a lower level of daily worry?

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  4. Congratulations, Paul. I reckon it is overwhelming and you are still enduring some pain.
    If you allow me, I will give you my two cents opinion. Don’t overthink. You are already in the “next”. You are cancer free. Think of all of those who are not.
    You already made excellent choices and are busy with them.
    Paying back is the most beautiful way to show your gratitude. Everyone you mentioned will feel in the same way.
    Here is a virtual toast to celebrate your life and to wish you many happy years with your family.
    Lucile

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  5. Hi Paul,

    I just spent the last couple of days reading your blog, and I just wanted to tell you the writing is brilliant. Raw. Honest. Engaging. This blog sharing your journey would make a great book, especially for those sharing similar circumstances. I just wanted to share with you that it was an amazing read.

    It was quite interesting when I came across your blog the other evening, I was just booting around the internet avoiding finishing a job and I came across your picture. We actually went to school together and I debated with your sister. Half a lifetime ago, before marriage and children, I was Debby Davis.

    I wish you all the best with your health and family and look forward to reading more of your posts.

    Take care of yourself.

    Deb

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