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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  • Joy Watkins
    26th Apr 2017, 1:27 am  Reply

    Am reading your special book Sophie at 2am can’t sleep as my big fat liver won’t quite let me lie down .
    I have terminal Breast cancer and relate to much you are sharing … your honesty and willingness to be with what is happening to you .
    Am about to start a new trial tomorrow as my liver is now mostly tumours rather than liver. I want to send you much Springtime love and energy for now xx

  • Jan Prior
    19th Mar 2017, 9:01 pm  Reply

    Dear Sophie, I have only just found your book – the most useful source of advice. I send love and positivity to you as you face this next phase. You are truly inspirational. Thank you.

  • Linda Waite
    13th Mar 2017, 2:43 pm  Reply

    By now Sophie you will have had your operation and yet another mountain has been climbed. We are thinking of you and your lovely family and pray for a positive outcome.x

  • Richard Thorp
    10th Mar 2017, 11:00 pm  Reply

    Sophie, I’ve still got a card & amazing message you gave me years ago when we partnered to deliver a programme that touched more people in the U.K. than any other before or since. I read your words often. You said “whatever else you do, you have done enough. You have made a difference to thousands of people…” straight back at you & more. Your courage inspires & ripple effect continues. love x

  • Kate Allison
    10th Mar 2017, 2:03 am  Reply

    Your wisdom helped me so much when I was diagnoised with Secondary bowel cancer, a year ago. You helped me to believe that intuitition and creativity were the right paths for me to follow, despite the unevenessw of the emotional and physical terraine on this cancer trek. Until tonight I had not read your blog and now I have and I so wish your journey had not taken you back to the precipice. xx

  • lorraine miller
    8th Mar 2017, 3:51 pm  Reply

    Sophie, what a blow for you, after all you’ve been through. Your dignity and valour are inspirational. Keep going, keep being You. Sending you love and warmth.

  • Laura Book
    7th Mar 2017, 10:13 pm  Reply

    So sorry to hear this latest news of yours. I just finished reading your book and will reread it because the insights and wisdom are pure spiritual genius. Your words fill my heart with love and peacefulness and help me to deal with the fear of living with stage 4 lung cancer. I am at a loss for words but hope you find the right treatment. Hugs to you.

  • Alison Crossley
    7th Mar 2017, 2:59 pm  Reply

    Gutted. Now its time for us to send you kind and loving thoughts and hold you up as you have supported us. Keep fighting lovely lady, there is always hope xx

  • Sue Nicklen
    6th Mar 2017, 1:06 am  Reply

    Hi Sophie,
    Doctors knew I had brain tumours, 12 to be precise in December but waited until after Christmas to tell me. I admit to being a bit surprised but I was also pleased because I had an amazing Christmas. How brave of you to share your news. I hope there is something that can help you. I am praying for you Suexxx

  • Jane Capreolus
    4th Mar 2017, 10:15 pm  Reply

    Dear Sophie & Family, I’m thinking of you and sending you love and strength at this time. Thank you all for sharing the gifts of your insights, experiences & thoughts. You help so many. May you receive the guidance you need and very soon. Blessings and love, Jane x

  • Ricky Hogan
    28th Feb 2017, 8:57 pm  Reply

    Hi Sweet Sophie, thank you for the update. I hope your spirits remain positive.
    May the Irish hills caress you.
    May her lakes and rivers bless you.
    May the luck of the Irish enfold you.
    May the blessings of Saint Patrick behold you.

  • Christine Thornley
    28th Feb 2017, 3:49 pm  Reply

    Dear Sophie
    Read the update on the 25th but my computer has been on the blink till now.
    So sorry to hear this news but my love and thoughts are with you all the way for whatever happens next. Lets hope there is an inspirational medic out there waiting to help.
    Much love Christine

  • 28th Feb 2017, 11:34 am  Reply

    Dear Sophie my heart sends to you the light you gave me.

  • Vanora Bennett
    28th Feb 2017, 12:49 am  Reply

    Dear distant cousin Sophie, we’ve never met but I often feel we have, as since you started your blog and I started reading it I have become one of your greatest admirers. Thank you for your wonderful honesty and lightness of touch. I just wanted to say now that I am most definitely praying for you and sending every possible good wish your way. Vanora

  • Anne Chalfant Brown
    27th Feb 2017, 11:13 pm  Reply

    Dearest Sophie, I am so sorry! I am holding you and John and Gabriella close in my heart. I’m praying for your discernment as you make treatment decisions. I pray for your healing. I acknowledge your courage and depth of spirit. I love you, Anne

  • Robyn
    27th Feb 2017, 3:54 pm  Reply

    Hi dear Sophie
    Sending you buckets of love from NZ. Kia kaha. At the last mtl weekend we had we collectively sent Clare this thunderbolt of love altogether with a huge giant POW. Now the POW is coming to you from all over the world. May this massive ocean of love carry you on your journey wherever this may take you. X Robyn

  • Gilli Stephens
    27th Feb 2017, 9:12 am  Reply

    Dear courageous Sophie, what rotten news. I am bathing you in the warm South African sunlight and beaming you healing rays. I am upholding you for this journey of yours which makes you such an inspiration to so many. Huge hugs xxxxx

  • Deborah a Tobin-Desson
    26th Feb 2017, 11:35 pm  Reply

    I don’t know what to say Sophie but I’m sending love to you and John and Gabriella xxx

  • 26th Feb 2017, 9:51 pm  Reply

    Re ‘liquid cells’ . The meninges are not liquid, they are membranes. They are, however, lubricated so i guess this is what they are talking about. Cells running accross the surface in the cerebal spinal fluid (CSF) that lubricaes the meniges.
    Hope this helps

  • Margaret
    26th Feb 2017, 9:31 pm  Reply

    I would be very annoyed if doctors delayed jn giving me all the information.

  • Susan woodhouse
    26th Feb 2017, 9:23 pm  Reply

    you stand for light and life Sophie in every way. John stands for light and life beside you. I am holding you deeply in my thoughts, wishing you strength in which ever form you need it. with love honour and respect Susan,

  • Lara
    26th Feb 2017, 8:57 pm  Reply

    Dearest Sophie
    You are a joy, and I’ve never met you! You’re in my thoughts, my prayers and all the loving light I can surround you with.
    Love and laughter

  • Jan Gowling
    26th Feb 2017, 8:26 pm  Reply

    Dear Sophie. Such a brave and heartbreaking blog entry… I hope you know that there is an enormous, collective, love-filled hug encircling you. Many of us are too far away to help with daily tasks etc but you can be assured that you are in our thoughts and prayers.
    Sending love and hope.
    xoxox jan gowling

  • Maurice Orange
    26th Feb 2017, 8:22 pm  Reply

    “Keep calm ~and carry on”

  • 26th Feb 2017, 6:45 pm  Reply

    Dear Sophie,
    On our way back from Puerto Escondido and your parents, we stopped at Our Lady of Guadalupe Basilicas to pray for you and your whole dear family in Mexico City.. I pray our prayers are answered in the best possible ways. You are held in our hearts always, Julie and Howie

  • Susan Ball
    26th Feb 2017, 6:15 pm  Reply

    Sophie, John, Gabriella – we are, indeed, holding you in our hearts, and thoughts more than ever right now. God bless you all. With much love, Susan, Tim and Dan xxx

  • Rachel Boothroyd
    26th Feb 2017, 4:47 pm  Reply

    Holding you and your family close in loving thoughts Sophie. You are in my daily meditation. I have such deep gratitude for what you’ve done for me, the work you are doing and the transformation you bring. Love xxx

  • Andrea MacIntyre
    26th Feb 2017, 3:54 pm  Reply

    Dear Sophie,
    I was so sad to hear this news. We are ‘holding you (and your family) in the light’ as the Quakers say.

  • Hermione
    26th Feb 2017, 3:42 pm  Reply

    Dearest Sophie,

    What a blow. I am truly sorry. It seems that every time you reach the top of the hill you are confronted by another one. Don’t give up.

    Just wanting to send you, John and Gabriella a big hug,

    Hermione x

  • Sam Dennis
    26th Feb 2017, 3:35 pm  Reply

    Sophie, This is crap and I wouldn’t know where to begin to say any more than that. My thoughts and prayers are with you and your family. I look forward to hearing more from you in the future when you have a plan and are moving forward again. In the meantime, keep the faith and much much love xxx

  • Deb
    26th Feb 2017, 3:20 pm  Reply

    Blessings from Ireland sweet lady, holding you in my thoughts. Thank you for the gift of you and all that you have brought to the world to date. Wishing you strength,faith and courage for this leg of the journey!

  • Steven Walton
    26th Feb 2017, 2:55 pm  Reply

    I found your Update to be factual, unambiguous and honest. I don’t see any sentimentality or unrealistic thinking. There is always Hope. I find you the “patient” at the cente are the one who supports others. I Give-A-Shit because I care for you and me. We benefit from your intelligence and education, your creativity as an author and your willingness to be open about your health and relationships.

  • Cousin Mary
    26th Feb 2017, 2:41 pm  Reply

    Oh darling, darling Sophie. ALL our love is with you, surrounding you and holding you. xxx

  • 26th Feb 2017, 1:50 pm  Reply

    Such a horible blow for you and admire the way you respond withcharcteristic blend of apparently calm rationalism while being honest about the emotional impact. My rational side was intrigued and alarmed by your phrase ‘liquid cancer’. That sound straight from a sci-fi horror movie. What does it mean.’ How would a liquid cell continue to function. Don’t bother to answer – just had to register it

    • Sophie Sabbage
      26th Feb 2017, 5:15 pm

      So you to ask this Jerome! My understanding is that the brain lining/meninges is liquid so when the cancer cells enter the lining they spread out. It looks like streaks on the scan instead of contained shapes with clear edges. This is what makes it hard to target. But I’m the patient. Please educate me if I have misunderstood this!

  • Jane Gooding
    26th Feb 2017, 1:50 pm  Reply

    Hey Sophie. I trust you to trust you and to know what works for you. I love your real ness. I have noted and understand all your points. I am acting on no. 7. Sending you healing love light and healing and Deep gratitude for you and your gift to so many. Xx Jane

  • 26th Feb 2017, 1:33 pm  Reply

    Dear Sophie Thank you for the update sending you lot’s of love and healing Chris xxx

  • ken mcdowall
    26th Feb 2017, 12:00 pm  Reply

    Met you at Maggies edinburgh and heard your latest health update.i dearly hope you can fight this off again.
    You deserve to have your prayers answered after what you’ve been through.

  • Mary Reynolds
    26th Feb 2017, 11:22 am  Reply

    Dear Sophie
    I am so sorry to hear this news. You have been an inspiration in the way that you are dealing with your journey and i have been touched often by your courage and huge heart. Sending love and prayers for your and your family. xxx

  • Bernadette King
    26th Feb 2017, 11:20 am  Reply

    Sending you and your family love and light.
    In gratitude

  • Andrea Batten-Gray
    26th Feb 2017, 11:15 am  Reply

    I am sending huge hugs to you. My news is not good and I did want to Skype with you but I will leave it a while you clearly have a lot on your plate for now. All my love Andrea xxxx

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