Health Update | 25 Feb 2017

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Signing books at Maggie’s in Edinburgh this week

So, my friends, this is happening…

Having been told the spots on my early December brain scan were all just scarring and “not to worry”, I have learnt this wasn’t the case. Eight weeks later my neurosurgeon called me in to tell me about a new tumour that seemed to be in the lining of the brain. This is called leptomeningeal disease (LMD), which means the cancer cells have gained access to the cerebrospinal fluid pathways. Essentially they become liquid, which rules out the targeted radiotherapy I had a year ago.  He had already requested it from the powers that be and been turned down. “Whole brain radiation is all we can offer now.”

Naturally I pushed back and asked for a super scan to make sure this was the case, which he agreed to do. A few days later I learnt that the situation is worse than thought: at least six new tumours in the tissue of my brain and another area, which he hadn’t yet mentioned, showing undeniable LMD. I could see the liquid streaks on the scan – and my options appearing to shrink faster than the cancer had spread. I was as blindsided as I was gutted. He had known I was in real trouble since before Christmas and didn’t tell me until this moment.

I. Can’t. Even.

His reasons and what they say about the medical culture is the subject of a lengthier article for another day. For now this is what matters:

  1. I have multiple tumours in my brain, including LMD.
  2. He is still batting for me and I am over being angry with him. After all, he saved my life last year.
  3. I am exploring any possible alternatives to Whole Brain Radiation, which can have serious side effects.
  4. Not treating them means game over.
  5. The rest of my body is completely fine.
  6. I have asked them to biopsy a brain tumour for possible mutations (which could open up another treatment) because I have nothing to biopsy in my body. This is under review. Might be possible. Might be too dangerous.
  7. My beautiful brain continues to be my most vulnerable area and there is much “whispering” to do about this.
  8. I am clinically well apart from low grade, permanent headaches.
  9. It may be some time before I know my next move.
  10. We have a short window of a few weeks to take action.

Meanwhile, life goes on. I intend to live it. I will update you on developments when I have something new to share. This has all been unfolding for a couple of weeks and I now feel ready to go public about it. I am not ready to write something inspiring or pretend I have come to terms with it more than I have.

This is what I ask at this time:

  1. Please don’t offer me advice (yet). When I need it, I will request it. For now, I’ve got this.
  2. Please don’t assume that I can turn this around because I have done it before. I am not superwoman. This is a whole new ballgame and previous treatment options have run their course.
  3. Please trust that I have not given up and will dig deep to find a way through this.
  4. Please don’t tell me to rest, conserve my energy and stop doing so much. Doing what I do brings me joy, feeds my soul and makes me feel alive. I am choosing my shots and resting in between adventures. But as long I can (write, speak, travel, serve), I will.
  5. Please be patient if I am slow to respond or act. I have officially hired my husband John as my assistant (on a zero hours contract!) so contact him if there is something critical to attend to.
  6. Some practical help is welcome. Make any offers to
  7. Please pray for me and communicate any loving thoughts. Hold us close.

That’s it folks. We are climbing the next ridge and keeping the faith. Onwards.

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  • Angela Potter
    26th Feb 2017, 11:14 am  Reply

    Sending lots of light and love and prayers xx Angela

  • Sheeb
    26th Feb 2017, 10:47 am  Reply

    You are inspirational Sophie. Keep up the good hope. I find by doing visualisations and working with the chakra system nearest where the cancer has manifested to be useful. I can work with the energy and feel the effects on my tumours. In my case anal cancer which corresponds to the base chakra, the colour red etc. I guess yours would be between the throat and crown chakras.My prayers are with you

    • Anne
      26th Feb 2017, 1:11 pm

      Dear Sheeb, thank you for sharing your tips with Sophie and us all, I commented earlier about my own journey with anal cancer and also work with visualisations and the chakras. If you and Sophie are willing I would like to connect with you, as anal cancer is rare and i would like to connect with others who have it as a ‘buddy’/support group. Sending love and prayers to you and all on here x

  • Richard
    26th Feb 2017, 10:34 am  Reply

    We love you Sophie, brave courageous spirit…xx RR&E

  • 26th Feb 2017, 10:00 am  Reply

    Sending you all much love and healing hugs xxx

  • Lucy Howe
    26th Feb 2017, 9:39 am  Reply

    Genuinely gutted for you and your family. You are such an inspiration. Thoughts and prayers with you every day. Lucy x

  • Peter Lurie
    26th Feb 2017, 9:08 am  Reply

    Always! With love!

  • Clare Jones
    26th Feb 2017, 8:46 am  Reply

    Thank you for sharing – thinking of you x

  • Jill
    26th Feb 2017, 7:51 am  Reply

    Love, hugs and prayers – for you, John and Gabriella. Just keep doing your thing Sophie – you are making a difference xx

  • Erica Alheit
    26th Feb 2017, 6:51 am  Reply

    Dear Sophie
    I am sending you so much love and light and hugs You brave, brave heart! You are such an inspiration to so many..
    Much love to J and Miss G

  • Hilary
    26th Feb 2017, 6:30 am  Reply

    Dear Sophie,
    I have read your blog since it started & your book, cover to cover, although I do not have cancer. I have shared it with many people because I have found such wisdom, compassion, creativity and humanity in what you say and how you write. Your experience and words are a lesson in living – thank you for every one of them. I am holding you and your family in my heart.

  • 26th Feb 2017, 5:33 am  Reply

    I am thinking of you and praying for you. God bless, much love Valerie

  • Nomeki G
    26th Feb 2017, 4:08 am  Reply

    Prayers to you and your family. I am sending an overseas hug from New York . Peace and all good thoughts to continue the strength of the spirit.

  • Anne
    26th Feb 2017, 4:00 am  Reply

    Dear Sophie,
    So sorry to hear this. I have followed your blog since my diagnosis in Oct 2014 (anal cancer) and you have been an inspiration in how to live with cancer and stay as positive as possible. I am on an alternative protocol and the main things that i feel are working for me are plant medicine (cannabis, mistletoe), frankincense, emotional processing and prayer. I wish you well x

  • Catherine Lanigan
    26th Feb 2017, 3:31 am  Reply

    Holding. Close. Xxxxx

  • 26th Feb 2017, 2:53 am  Reply

    Sophie – I love you. Sending energy. EOM

  • Rosemary Alder
    26th Feb 2017, 2:48 am  Reply

    Dearest Sophie, you are and continue to be, inspirational. Sending love and light your way. xo

  • Barbara
    26th Feb 2017, 2:34 am  Reply

    Sophie, you are in my thoughts and prayers. You are an incredible human being alongside many others and your journey as a THE cancer whisperer is unique, thought provoking, trustworthy and inspirational. I read all your posts and read each thoughtful comment you make towards others with curiosity. I especially have been intrigued and interested in the win vs. lose philosophy. There is more…❤

  • Ted
    26th Feb 2017, 1:54 am  Reply

    You are not alone in this journey. We’re all with you.

  • iida E Beltran
    26th Feb 2017, 1:49 am  Reply

    Dear Sophie Iḿ sorry to hear this. Sending prayers and love. Thank you for being our inspiration in this journey. All love xoxo.

  • 26th Feb 2017, 1:46 am  Reply

    Praying for you Sophie and keeping hope alive and dressed in its party frock. Much love. Xxxxxxxxxxxxx

  • Sheryl
    26th Feb 2017, 1:46 am  Reply

    WTH! Sending you a multitude of love and light…and huge prayers for you to find the perfect guidance! ❤

    Sheryl XO

  • Carolyn
    26th Feb 2017, 1:45 am  Reply

    Dear Sophie,
    I bought your book when I saw you on BBC news a couple of weeks ago and have gained strength and positivity reading it. I am so very sorry to hear this news, sending you love.
    Stay strong you amazing woman x x x

  • 26th Feb 2017, 1:08 am  Reply

    Thank you for living out loud, Sophie, even when the news isn’t what you or any of us hoped for.

    Sending love and healing energy your way.

  • 26th Feb 2017, 12:13 am  Reply

    Dear Sophie my prayers are with you you are in my thoughts all the time you inspire me so much reading your book at moment hanging on to your every word may God be with you and your family take care beloved one xxxxxx

  • Julie webster
    26th Feb 2017, 12:07 am  Reply

    My eyes are full of tears, my breath sighs deeply, sadness rests on my shoulders. Yet HOPE where is hope? Romans 8:24-28
    Hope that is seen is no hope at all….we wait for it patiently, …the Spirit helps us in our weakness…..He himself intercedes for us through worldless groans…..And we know that in all things God works for the good of those ho love him ……

  • Andrea McFarlane
    25th Feb 2017, 11:48 pm  Reply

    Dear beautiful, brave and amazing Sophie,
    sending you all the strength and courage I can, wrapped in immense and immeasurable gratitude for the help you have given to me, my family and my patients. I hope all you have given will sweep back wrapped in gratitude to you, you many times over. Be strong as you are, much love Andréa xxx

  • Marisol
    25th Feb 2017, 11:45 pm  Reply

    My Heart reaching out to you in love and respect X

  • Clare Vivian-Neal
    25th Feb 2017, 11:42 pm  Reply

    Oh dear Sophie. Tears rolling down my cheeks as I write. I wish I was nearer and could juice for you. From afar I am loving you and praying for the mystery to unfold. Opening my heart to Julian of Norwich’s words to find a home in me with your news: “All shall be well in all manner of things.” Not. There. Yet. Love Cxx

  • Annette
    25th Feb 2017, 11:32 pm  Reply

    So sorry to read this. I cried. You became my inspiration after seeing you on tv and having read your book. You are so strong.
    I have two brain tumours, following my two lung tumours, one lung now got more after treatment. And just had massive pulmonary embolism and have multiple blood clots in both lungs.
    Life can be so cruel to the best of people.
    I wish you well always xxxx

  • Troy Bertelsen
    25th Feb 2017, 11:30 pm  Reply

    My heart is with you Sophie, and with your family. I share breath in the space of I Dont’t Know with tears of love for your healing. I will prepare a Sweat Lodge Ceremony to pray for you 8days from now in the way I have found most connecting. Love and Compassion, Troy

  • Jackie Armstrong
    25th Feb 2017, 11:27 pm  Reply

    Listening to your talk at Maggies has put me in a better place after being a little low, so inspiring
    Love and hugs to you x

  • Sophie Sabbage
    25th Feb 2017, 11:19 pm  Reply

    Just to be clear peeps. By “practical help” welcome, I don’t mean medical advice. I mean juicing, cooking, play dates with G etc. Ask John (my husband/assistant) for ideas if you want to support us.

  • Nicky Jenkins
    25th Feb 2017, 11:18 pm  Reply

    sorry to hear this Sophie

  • Paul McAweney
    25th Feb 2017, 10:52 pm  Reply

    Just to say I’m holding close Sophie, rattled and upset and remembering, but praying and hoping.God bless, Paul, x

  • Johnene Deasy
    25th Feb 2017, 10:52 pm  Reply

    You have so inspired me to “live” and serve.
    You are such a wonderful gift to all who are touched by your words
    And you will always leave a glow of hope wherever you have been.
    Thank you friend.

  • 25th Feb 2017, 10:47 pm  Reply

    Thank you for sharing what is so with us. I will hold you in my meditations with love.

  • Claire Molyneux
    25th Feb 2017, 10:47 pm  Reply

    So sorry to hear your news. You are such an inspiration.

  • Ann Everett
    25th Feb 2017, 10:46 pm  Reply

    Thank you for giving so much strength to myself & others. Your book chAnged my life. I send you heartfelt healing thoughts. xxx

  • 25th Feb 2017, 10:39 pm  Reply

    Hi Sophie, your book was one of the first things I read after my diagnosis of stage IV cancer, only eleven weeks after the birth of my first baby. It gave me so much hope and I agree that having a purpose is a powerful thing. I am holding you in my thoughts. Much love and gratitude from Australia

  • diana lennard
    25th Feb 2017, 10:36 pm  Reply

    Not only praying but also sending love XXDiana

  • Jen N
    25th Feb 2017, 10:32 pm  Reply

    You are such a gift to all of us who have found you. Follow your body, mind, soul. My thoughts and spirit are with you and your family. Thank you!

  • Trish
    25th Feb 2017, 10:14 pm  Reply

    Sophie l sent a response to your health update which is probably sitting in the web team inbox! Duh! I included some practical ideas that you may or may not have considered. I know by now how well educated you have become on this retrieve it if you can and as l said in that reply you have my wholehearted attention in the form of prayer

  • Siobhan
    25th Feb 2017, 10:13 pm  Reply

    Well dear Sophie I am doing g what I can for you which is sending you much love and light and holding you close in my living loving heart. Big gentle warm hugs for you from me.

  • Davelyn Vidrine
    25th Feb 2017, 10:13 pm  Reply

    Just holding space in my heart for you, Sophie.

  • Jan Jackson
    25th Feb 2017, 10:08 pm  Reply

    I. Can’t. Even.

    If the cohort of ‘Cancer Whisperers’ that you have created do nothing other than change the way the medical profession seek to control knowledge and results then you have made a difference.

    You continue to inspire people everyday. The more we pass on your name to others, the more peace we can bring.

    Prayers are being said. Go do your thing girl.

  • Jo
    25th Feb 2017, 9:52 pm  Reply

    I saw you at the Genesis Anniversary get together last night. I am an NHS and private secretary working in oncology AT Maidstone Hospital- you are an inspiration and I have thought about you all day today after listening to your captivating, moving and funny words. I hope my consultant takes what you said into the clinic room next week. Much love x

  • Gill Turner
    25th Feb 2017, 9:47 pm  Reply

    Praying! Hug!

  • Alan Griffiths
    25th Feb 2017, 9:42 pm  Reply

    Hi Soph,
    Just wanted you to know I love you dearly am deeply inspired by you and am rooting and praying for you with all my heart.
    Much love and best wishes

  • 25th Feb 2017, 9:42 pm  Reply

    Loving you. ❤

  • Tricia
    25th Feb 2017, 9:37 pm  Reply

    Holding you and your family close, Sophie. Sending much love and strength for you all. xxx

    • Leah
      25th Feb 2017, 11:10 pm

      Dear Sophie
      Sending you and your family so much love and prayers. Your book was the first thing I found after my diagnosis and was a complete inspiration. Thank you for the gift of your strength and heart. May you be well, all love xx

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