Bitter Sweet – a health update | 29 Sep 2017

Home / Diary / Bitter Sweet – a health update | 29 Sep 2017

This week – on the same day I heard that my dear friend, Annie Wegelius, had died from breast cancer – I got my latest scan results. Two months ago, I could not walk a few yards without assistance and didn’t think I would make this Christmas. Today I am virtually symptom free. My oncologist was innovative enough to put me on a drug that I don’t technically qualify for and doubled the dose to blast it into my brain*. The scan showed “a striking improvement”, with most tumours disappearing. Three remain after significant shrinkage (now no more than 6mm) – including that big bugger you can see on the scan, which is no longer visible to the naked eye and was the reason I lost my balance this summer. Boom! I am back from the brink again.

I am not cured and I don’t know how long this will last. These drugs have a limited shelf life. But even my oncologist was almost skipping with joy. He took a risk for me and it paid off. Moreover, I am 95% tumour free in the rest of my body. The primary in my lung is still there, but it is very small and appears to have shrunk a bit more as well. So, nine months after these latest brain tumours were discovered, I have been granted a significant reprieve. I am beyond grateful: to my oncologist, who treats me like a partner not a patient; to the person who generously paid for the first two cycles of this drug and saw me as a worthy investment; to my husband, for everything; and to That Which Is, for opening a door that seemed so likely to close.

This news wasn’t overshadowed by Annie’s death, but a shadow was certainly cast. We were close. I had only known her for two years, but kindred spirits with cancer don’t waste time or love. She was a pioneering TV producer in Sweden who contacted me when she read my book. It was one of those letters that shone with affinity. I responded immediately. During our short but intense friendship, she attended one of my cancer whispering workshops, I stayed with her in France (where I started my second book), we Skyped regularly and hatched some grand plans about how to change the world (as if we would both live forever). She taught me how to be fierce about the things I still want to do with my life. I taught her how to be vulnerable and how to pray. She lived with cancer for eight remarkable years. In recent months, I was privy to her fear of dying and her grief about leaving her fourteen-year-old daughter. But on our last call, just two weeks ago, I witnessed her at peace. It was hard not to gasp with shock when I saw how thin she was, but her eyes were gleaming and her face was so serene she looked ten years younger, as if the lines had been ironed out. It was stunning. It was how I want to be when I go.

Annie Wegelius
Annie Wegelius

When my oncologist told me my scan results, I welled up with tears: for Annie and for myself. We had no childcare that day so Gabriella was doing colouring in the reception area with my oncologist’s assistant while John and I read the radiologist’s report. She kept running in and jumping onto the exam table, pretending to be a patient. It was the first time we had taken her there. John and I had gone back and forth about it for a couple of days because he could have stayed at home with her, but Annie’s death tipped the decision. I did not want to go alone. Gabriella’s presence on this occasion was perfectly designed. I had just been given more time with her. For me, this is the definition of grace. Purchase cheap medications at, save your time and money.

On the same day, my 83-year-old dad was in hospital having a new tumour surgically removed from his right shoulder. He also has lung cancer and is pioneering new ways to stick around when many would just write him off. I spoke to Mum that evening and heard it had all gone well. She describes herself as being “in the middle of a cancer sandwich”, so there was relief for her all round.

It’s a strange thing living close to death – my own and other people’s. Annie is not my first loss since I was diagnosed, but she is definitely my greatest. When you love people with cancer, you need to be ready to lose them. But it never gets any easier. At the same time, everything that matters most is thrown into relief and commands your attention. Grief is just seconds beneath the skin. Gratitude sparkles like water in moonlight. Life’s mercies crunch underfoot.

There are more bridges to cross – like how to continue receiving a drug I don’t qualify for under the UK license and how to adjust to its side effects, the latest of which is a very infected toe (temporarily benching me again). But these matters are small. Sometimes it is enough to stop on the other side of the bridge we’ve just crossed and take in the view. It is enough to notice that on the day I lost my friend and gained more time with my family, sadness and joy amplified my heart in equal measure while bitter and sweet tasted exactly the same.

*For those who are interested, the drug is Osimertinib. It is for lung cancer patients with the EGFR and T790M mutations, but I tested negative for T790M. This is why I don’t qualify for it, but there is increasing evidence of its brain penetration and the process is under way for making it a first line treatment. It will be second line for me so we are yet to find out if this will allow me to receive it. It could take a few months too so we are strategising in other ways. Watch this space. 

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  • 4th Feb 2018, 9:22 pm  Reply

    Dear Sophie, You are inspirational! What a fantastic news you received in September…so sorry about your beautiful friend. To one fellow cancer whisperer to the other, do you believe that there are foods that can help you fight cancer..? I do and that’s my secret for the pass 11 years and I’m happy to show you how.

    Welcome to the South West – Bristol

    • Diane
      25th Feb 2018, 11:19 pm

      I too believe that food is the cure of cancer, so far it has worked for me (3 years). I would love to hear your food secrets and wish more people would take it seriously. My obnoxious consultant told me I wouldn’t survive 5 years, now he is much nicer, flirty even, (probably because I made a complaint), and he told me last month that I should now forget about cancer, as I’m in excellent shape!

  • Molly Jones
    28th Oct 2017, 12:53 am  Reply

    Sophie! Such good news! I always think of you when I walk by the beautiful horses on my way to the beach. I am so happy for you and your family, and sorry for your loss. I just recommended your book to a nurse practitioner I used to see who has a new position at the Osher Center for Integrative Medicine at UCSF. Carry on!

  • Muthoni
    14th Oct 2017, 10:45 pm  Reply

    Sophie, you are amazing, truly happpy for you.Am an ALK cancer patient on targeted therapy,praying for more years.

  • Amanda Nicol
    13th Oct 2017, 7:15 pm  Reply

    Wow Sophie that’s great news. I’ve been thinking of you. I lost my mother recently so removed myself from social media etc but have followed your progress. Go girl! Mum was the top layer in our family cancer sandwich, too many friends too so Feel for your loss. Onwards! Love Amanda x

  • Robert
    7th Oct 2017, 5:58 pm  Reply

    Hi Sophie:
    I came upon your blog today on Inspire. Incredible story and it gives me a lot hope!! I’m EGFR+, T-790 negative, PDL-1 @ 100% but since I’m a non smoker my onc here in NY doesn’t know if Keytruda is the answer. So my team decided to do what yours did…I am literally sitting here waiting for my first delivery of Tagrisso- which would be my second line after Gilotrif stopped working

  • 2nd Oct 2017, 11:46 am  Reply

    Magic Sophie. Your observation of grace through pain is one of the biggest lessons I experienced through leukaemia two years ago. Facing death head on, wakes you well and truly up.

  • Adam
    1st Oct 2017, 9:14 am  Reply

    Dear Sophie, I am so happy that your tumours are shrinking. You are an inspiration to many people! Love, Adamxxxx

    30th Sep 2017, 9:14 pm  Reply

    Sophie, I am so pleased to hear this positive and uplifting news. Keep praying and believing that you can indeed thrive and live a full life despite the circumstances. God bless and stay peaceful.

  • Lynné
    30th Sep 2017, 8:08 pm  Reply

    Dear Sophie,
    I hold my breath when I receive your blog updates and this update of your amazing scan, let me breathe deeply! Such thrilling and beautiful news. Praise God.
    I had the pleasure of meeting Annie at Hippocrates at a Cancer Wellness Program in 2015. What a dynamo and beautiful person, inside and out. She was the person that recommended your book to our group. Gratitude for you Sophie!

  • Charlotte
    30th Sep 2017, 4:51 pm  Reply

    Such happy news Sophie I am so delighted for you all. Lots of love Charlotte xx

  • linda
    30th Sep 2017, 3:18 pm  Reply

    Dear Sophie , U write so beautifully, admire u so very much, U have given me strength, through my C journey. Hope u are able to walk across the fields, and see the horses, just going to do ours. Look forward to your next update. xxx

  • 30th Sep 2017, 11:01 am  Reply

    Dear Sophie,
    Your latest blog is inspiring. I too have just lost my second friend to cancer…. and also had scans last week and am still here. I have an 11 point legacy plan, and am on it! Have also just started volunteering as a Hospice chaplain…. quite a bold recruitment decision from them! Onwards we go.

  • Cathy
    30th Sep 2017, 7:58 am  Reply

    Thank you Sophie for taking the time to post this update, this is wonderful news for you and your family, I’m so happy for you but sorry to hear about the loss of your close friend. Warm wishes. Cathy

  • Alison
    30th Sep 2017, 7:25 am  Reply

    So pleased for you Sophie that you have been given more time with Gabriella and your husband. Keep believing and pushing the boundaries. You are an inspiration to all.
    Blessings to your Dad too. you are an amazing family and your Mum deserves a hug too. I am the carer of my husband with terminal colon cancer and it is a roller coaster ride.
    Keep going, we are rooting for you. x

  • Anja
    30th Sep 2017, 7:02 am  Reply

    My dearest Soph, this is the best birthday gift I ever received, thank you so much for these wonderful news, I keep repeating myself but say it anyway. you are the most inspiring, admirable, lovable, courageous, purposeful person on the planet. With love and gratitude

  • Silvia
    30th Sep 2017, 5:39 am  Reply

    Dear Sophie, I am so glad about your scan results.
    And I want to tell you: You indeed did change the world and are continuing to change it.
    Good luck with you second book!
    You are in my prayers daily.
    Love from Silvia in Germany

  • carolyn copperwheat
    30th Sep 2017, 4:16 am  Reply

    Congratulations Sophie, such good news – it was good reading your post but sad to hear about Annie. We’ve also just lost Catherine Lanigan from the course we were on and I lost my brother in laws sister Clare a few weeks ago too. I’ve just had a mastectomy as my initial lump reappeared again after my lumpectomy last year. Wishing you and all those involved light and love xxx

  • 29th Sep 2017, 9:12 pm  Reply

    so pleased for you Sophie. I also completey get how you feel about goodnews tainted by sadness for others less blessed.

  • Jennifer Keating
    29th Sep 2017, 9:04 pm  Reply

    We are so very, very happy to hear your news dearest Sophie – it seems our Beloved wants you here on earth for longer doing your wonderful work and giving to your dear little Gabriella and darling hubby John. Hugs and much love in the One Love reaches across the oceans from the land Downunder. Jenny and Ross

  • 29th Sep 2017, 8:33 pm  Reply

    Sophie, I am so delighted to hear this. Having spent last Saturday with you I see a strong correlation between the cleansing of your spirit and the continuance of your brain and body. Your friend Annie looks so beautiful in the photo. I am glad that you loved her and sorry that you lost her. I lost my dear sister almost 10 years ago now to cancer at 45. I think of her still. Much love ZG xx

  • 29th Sep 2017, 8:25 pm  Reply

    Absolutely wonderful news Sophs though bitter sweet wit the loss of your friend. Every movement, opening the heart… Amazing grace… Enormous love xxx

  • Jane
    29th Sep 2017, 8:20 pm  Reply

    Dear Sophie,
    This is the best news ever, thank you for sharing it with us, Am so glad I saw you on Tv and bought your book and look forward always to hearing your updates. So so sorry for the look your dear friend.
    Love and best wishes to you and your family x x

  • Erica
    29th Sep 2017, 8:17 pm  Reply

    So happy for you Sophie. Many blessings all around!
    Love Erica

  • Amanda
    29th Sep 2017, 8:14 pm  Reply

    I am so happy this drug is working for you Sophie, its marvellous news. I hope you out live the shelf life honey! Good news for your dad too, seems you both have the fighting spirit and positive attitude. lots of love and hugs to you and your family xxxx

  • Gilli Stephens
    29th Sep 2017, 7:47 pm  Reply

    Dearest Sophie, the purpose of your life is extra-ordinary. You are trailblazing again with success. I have been so afraid for you but here you are back on your sometimes wobbly track. As always I salute your courage and grace. So dry of dear Anne to be a cancer sandwich, blessings to you all. xxxxxx

  • Virginia
    29th Sep 2017, 7:34 pm  Reply

    Fabulous news Sophie! I know how it feels, I feel a reprieve each check up for breast cancer. Praying for you too!

  • Kate Edgley
    29th Sep 2017, 7:05 pm  Reply

    I am so relieved to read this Sophie. It seems like a miracle but I know it’s actually the result of very very clear headed thinking. Bless you for being the living embodiment of the possible. Much love, Kate xxx

  • Carla
    29th Sep 2017, 7:05 pm  Reply

    Dear Sophie,

    I am so very very happy for you. Møre And more I am starting to believe that you wil make it to your daughters adulthood, or better: wedding. It is amazing what you have achieved and which example you set for other cancer patients. I am a lung cancer patient myself with brain tumor ( removed) and resent lesion which was removed through radiotherapy. very sorry about your loss.

  • Katherine
    29th Sep 2017, 7:01 pm  Reply

    Dear Sophie
    I am Katherine. I have Neuro Endocrine Cancer. I have been living with it for eight years of harrowing treatments and massive surgeries. When I found you, I felt blessed. Your words gave me the boost I needed to keep on going with hope and gratitude.I am Coming to see you in Oxford on Thursday. I am so delighted to hear how things are going. I too lost my best Cancer buddy recently

  • Mikaela
    29th Sep 2017, 6:52 pm  Reply

    Sophie, what brilliant results to receive! I’m on Osimertinib too, and very glad of it right now. Your beautiful words sum up a lot of the whole situation & really do help. I’m sorry to read of the loss of your friend xx

  • Martina
    29th Sep 2017, 6:47 pm  Reply

    This is the best news ever, thank you for sharing with us, always calming and loving words of comfort relief and support. Good for YOU Sophie always knew you would pull through we hear your wellness flooding us in your books and post. So glad I saw you on Tv and bought your book changed my life! Love and best wishes to you and your beautiful family. Martina 😘

  • 29th Sep 2017, 6:43 pm  Reply

    I am a writer of two business management books. There are two I had a spiritual call to write books in this area (I’m in the first of a trilogy at the moment). In a way, your journey has also inspired me in my spiritual call. Stand firm and count on my positive vibes!

  • 29th Sep 2017, 6:41 pm  Reply

    Sophie, I live in Brazil. I read your book and follow your blog posts and social networks. Every time he tells us about a small victory, that’s my heart of pride and joy. I have an uncle with metastasis of a cancer in the rectum and a great friend with an aggressive neuro-endocrine cancer, so his reports are always a well of hope. (to be continued)

  • Nomiki Glasstein
    29th Sep 2017, 6:38 pm  Reply

    So happy for your little miracle bud so sad for your loss. I too lost a friend to stage four colon cancer on Easter Day. She had four children. I know she is in heaven , but my heart still breaks for her family. I just had a blood biopsy which tested negative for Tagrisso t790 mutation. They plan on giving it to me anyway, mydoctors have to to fight two weeks to have the denial hopefully approved

    • Sophie Sabbage
      29th Sep 2017, 6:52 pm

      Are you in the USA? The rules are different in different countries. I might not get it even though it is working! I truly hope you do. Have hope. I’m T790 negative too.

  • Peggy
    29th Sep 2017, 6:32 pm  Reply

    Soph, this post took my breath away. Yes, I love someone with cancer – you! – and yes, I work to prepare myself to lose you. Today I am overflowing with gratitude that it won’t be anytime soon! Onwards!

  • Paul Phillips
    29th Sep 2017, 6:03 pm  Reply

    Your words shine with wisdom, peace, acceptance, love–and bestow those gifts on we who read them. Thank you.

  • Sabrina Scolaro
    29th Sep 2017, 5:57 pm  Reply

    Sophie. What a great result for you and your fantastic brain. I’m so happy for you and your precious family. I’m selfishly happy for me too as you are making such a positive impact on my life.
    Onwards dear Sophie. You are loved. X

  • Alison
    29th Sep 2017, 5:41 pm  Reply

    Soph – your resilience, your wonderfully gracious response to fear and Annie’s loss, your open hearted approach to life for however long we are lucky enough to have you around, the sheer joy of the beautiful words that you write. They are all a testament to hope and to peace and to Indomitable, Inspirational, irepressible YOU.
    Big hug and lots of love Chubs x

  • Alexandra
    29th Sep 2017, 10:11 am  Reply

    Sophie, I am so, so happy for you. I am a young ALK +lung cancer patient with a young child, and I understand all too well the maelstrom of emotions that comes with living with this diagnosis. May your targeted therapy provide you with many months, or years, of relief and time with your family xxxx

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