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Health Update | 21 May 2017

Home / Diary / Health Update | 21 May 2017

I don’t think I’ve been in touch since my brain surgery two months ago. Sorry about that. It’s been pretty full on of late. I know some of you are wondering how I’m doing and I wish I had the bandwidth to blog about it. There is the medical news, which I will summarise here, but there is the rest-of-me news too – the inner stirrings, the nuanced discoveries, the latest encounters with my deepest fears and longings, the unlikely gifts. I am learning a lot and will share that with you soon enough. Promise.

So if you want the headlines about my health:
  1. I had brain surgery in March to biopsy a tumour for a particular mutation that might qualify me for a new drug, which could give me a new lease of life. My surgeon was awesome, I am recovering well and I still have a full head of hair. Boom.
  2. Three weeks later I was told I had tested negative for the mutation and don’t qualify. That night I slept for three hours. I pictured months ahead of me instead of years. I cursed cancer. I dipped my toes in despair.
  3. The next day I pulled myself out of my boots, travelled to Newcastle to give a talk at their Maggie’s Cancer Centre and, in the presence of many brave cancer peeps, remembered what I’m really made of. Onwards.
  4. I am now in an intense process of discussions, questions and exploration – including visiting the unique (and somewhat controversial) Burzynski Clinic in Houston, Texas last week. I need to weigh up the pros and cons of that experience before I report back to you usefully.
  5. Some options are now on the table as alternatives to Whole Brain Radiation, but there is no clear way ahead. At this point we are reviewing, evaluating, discerning and to some extent guessing. Every choice seems risky. And there are choices, which is considerably more than I had a couple of months ago.
  6. My brain scan ten days ago revealed that the tumours had not grown since early March (having shrunk the three weeks prior), which continues to mystify my medical team. I decided to make no changes to my medical treatment until the next scan (now every six weeks) in June.
  7. Meantime I am doing my complementary treatments and getting on with my glorious life.
  8. And I finally had a port fitted two days ago. Quite sore from surgery, but well enough to come to Bath for my talk tomorrow. Bye-bye vein-stabbing and being a pin cushion. (See photo above).
It is nearly six months since discovering the latest flurry of lesions in the tissue and lining of my brain. Their presence in the lining is what makes this so difficult (leptomeningeal disease), but I remain optimistic (mostly) and asymptomatic. Steady as she goes.
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Comments(32)

  • Paula
    19th Jun 2017, 1:00 am  Reply

    Love from Brazil Sophie. God bless you.

  • Raj Thamotheram
    16th Jun 2017, 10:26 pm  Reply

    Sophie
    You’ve are an inspiration to me and so many others.
    Keep strong and be kind to yourself too.
    Love
    Raj

  • jacinta mcshane
    3rd Jun 2017, 8:58 am  Reply

    Your smile is glorious. You are guided and blessed. You are ‘in touch’ and onward you will go. Bless your courage, your humility, your openess, your remarkable ‘giving’….bless YOU! Big hugs. Jacinta xx

  • Amanda Collins
    27th May 2017, 7:38 pm  Reply

    Faith can move mountains – after all, she is a big girl! I remember your winning speech aged 16. You were an inspiration at school and continue to be one! Love & respect to a remarkable head girl x

  • 25th May 2017, 6:08 pm  Reply

    Sophie, so glad to have found your website and blog. THANK YOU for saying it differently – I thought I was the only one (or at least a little weird) to be thinking that cancer is not an enemy. It’s part of me – literally. It’s my OWN cells getting a confused message and doing the wrong thing – not some foreign invader. Keep strong – btw, the ports are awesome, you won’t regret it!

  • Susan Woodhouse
    23rd May 2017, 1:28 am  Reply

    Looking from afar Sophie, you continue to inspire with your amazing spirit. If any of us out there can gain from your example of spirit in this world then the world is by far a richer place because of you dear women. with love S

  • Steve Day
    22nd May 2017, 8:58 pm  Reply

    Hi Sophie, thanks for your update, I was starting to wonder how you were doing… I was diagnosed in December, stage 4 metastasized prostate cancer & to the bones, 43 years old, PSA 800 then, now 25… Went to a support group at the start of the year in Kent & was shown your book there, have now read it, loved it & will read it again…!?! Hope to meet you in Canterbury on the 21st of July…

  • Anthony Dellaventura
    22nd May 2017, 8:05 pm  Reply

    God Bless!

  • Christine Thornley
    22nd May 2017, 4:00 pm  Reply

    Thank you so much for the update Sophie – I have been wondering how you are doing and checking to see any new info. I can only re-iterate what all the other comments on here say – you are truly one inspirational lady! Positive thoughts and much love

  • Cathy McIntyre
    22nd May 2017, 1:49 pm  Reply

    Dear Sophie thank you so much for taking the time to post this update. Sending you warm wishes. Cathy X

  • Alma Taylor
    22nd May 2017, 1:07 pm  Reply

    I am blessed to have found your book which lead me to you. You are truly an inspiration in regards to ‘keeping it real’. I have been telling many friends and family members about you and how gifted you are with helping others face their own challenges. It’s highly unlikely that I’ll be able to attend a presentation in person but hoping someday, it can happen via internet. Sending love and prayers.

  • Pamela HS
    22nd May 2017, 11:33 am  Reply

    The Angels (Bless’em) must be surrounding your days with love and giving you amazing strength, you are an inspiration

  • 22nd May 2017, 9:35 am  Reply

    Just sending you HEAPS of love, Sophie. <3 <3 <3

  • Robert Nock
    22nd May 2017, 9:09 am  Reply

    You look more gorgeous each time I see you. Keep cracking the codes. Much love xxx

  • Annette Harrison
    22nd May 2017, 9:00 am  Reply

    So glad to read your update. Been thinking about you a lot. Onwards and forwards. You are my inspiration. Hugs and love x

  • Audrey webber
    22nd May 2017, 7:45 am  Reply

    Oh my Sophie, you just keep on growing despite this dreadful disease, you keep on inspiring us thru this dreadful disease, you are truly amazing.

  • June WAlker
    22nd May 2017, 7:32 am  Reply

    Having received your news so soon after the gift of Art of Responsibility in York am full of gratitude for your life, your work, your willingness to share your experiences. Alongside those there is comfort knowing that my grief, my sometimes gut wrenching sadness is a precious part of life in the face of reality. Your reality evokes a continuing message of love.

  • Janet currier
    22nd May 2017, 7:23 am  Reply

    So pleased to hear you are doing well because you’ve often been in my thoughts since I got your e mail about the surgery. Your courage and willingness to find the gifts in difficult times are an inspiration. Thank you for sharing – it really helps the rest of us. And just to say I love my port now and it makes infusions etc so much easier. Wishing you light and love Sophie x

  • Virginia
    22nd May 2017, 7:04 am  Reply

    Dear Sophie, thanks for the update. Wow what a journey you’re on! Well done for getting with your life. Keeping you in my thoughts and prayers.

  • Pete Whimster
    22nd May 2017, 7:04 am  Reply

    Still alive and (?)well masel but considerably older(fond of regarding aging as a disease nowadays). Brain tumour(lhs , front) oot at age 69 last Oct , just as well – disabling! Follow up radiotherapy to rhs of brain has me a bittie ‘groggy’ for last six weeks but still enjoying my retirement. Natural Burial Site(Cothiemuir) booked for my wife and I , just in case! Respect to all and ‘Good Luc

  • Jenny Keating
    22nd May 2017, 12:30 am  Reply

    So good to get this update Sophie. Your wonderful spirit shines for all of us. May His Love, which is the One Love, continue to shine forth from you and light the way for others. Our loving thoughts are with you and your darling Gabriella and John in our daily prayers. In Him, Jenny and Ross Keating

  • Clare Vivian-Neal
    21st May 2017, 10:39 pm  Reply

    I am humbled and inspired to see you choosing gifts each step of the mysterious path. And, you are even more “essentially Sophie” than ever as you lead your glorious life. Thank you dear precious friend.

  • Jen
    21st May 2017, 10:19 pm  Reply

    Thank you, Sophie! You are a force to be reckoned with — it seems your cancer cells know this too. Your openness as well as your thoughtful circumspection, sharing with us so generously, but not until you have let your mind and your heart settle — all of this a reminder of how to really live one’s life. May your heart remain full and your body be as free of pain as possible!

  • Val Turner
    21st May 2017, 10:18 pm  Reply

    Your courage awes me and gives me a reason to enjoy my life and work with the side effects of my tumour.

  • Cecilia Spencer
    21st May 2017, 10:10 pm  Reply

    Sophie I met you at one of your talks in London. I introduced myself as a fello cancerian and horse of fire. Your fire turely shines and lights up the path for others. You are a very inspiring. Thank you for sharing your journey. I wish you an abundance of blessing. Love & Light, Cecilia x

  • Nomeki Glasstein
    21st May 2017, 10:09 pm  Reply

    So good to hear from you . You look wonderful! Thanks for keeping us up to date with your health. You are truly an inspiration and the epitome of Grace during unsettling times. Thank you for allowing me to be a part of your journey. I am reaching the one year mark on afatinib. I had full brain radiation and so far so good except for short term memory. I am also stage four. All my best Nomeki 🌸

  • Annabel
    21st May 2017, 9:15 pm  Reply

    Whole brain radiation sounds hideous and instinctively I am sure it should be avoided. What are the facts? Scientifically why it is to be avoided? Apologies if I sound blunt and too direct. I am a friend on the cancer whispers website, so know how you work!
    Thank you for any feedback.

  • 21st May 2017, 9:09 pm  Reply

    I send you so many good thoughts, positive visions, and prayers. May courage be your companion and guide.
    I am in treatment at MD Anderson, Houston for uterine cancer.
    So far, so good.
    Blessings and grace,
    Lucia Ferrara Bettler
    Houston, Texas
    Lucia’s Garden—Healing Shop

  • Bonnie Clarkson
    21st May 2017, 9:00 pm  Reply

    I have been waiting from an update from you Sophie and am so pleased today to have email notification of one! You are truly inspirational and as a fellow cancer trooper, give me hope every time I see your smiling face in a photo. I have read your book a hundred times. Love to you.

  • karen sloanes
    21st May 2017, 8:59 pm  Reply

    Good luck to you Sophie, we met at Newcastle Maggie’s you were inspirational, educational and fabulous. I’m the person that had full brain radiotherapy in Jan 17. Lots of love xxxxx Karen

  • 21st May 2017, 8:58 pm  Reply

    One thing that we now all know from following your life Sophie, is that it is not just a simple decision of treatment or no treatment. Except for your brave path, nobody would ever think that there were so many different ways to go down the path. Thank you for teaching us.

  • Pam Devine
    21st May 2017, 8:49 pm  Reply

    Dear Sophie – I hope you amaze yourself as much as you amaze us.

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