Statistics schmatistics

“We must treat people not the individual diseases.  I am living proof of what is possible” Lance Armstrong.

I’ve been reading a book called ‘Love, Medicine and Miracles’ – sounds a bit cheesy I know but it got me thinking about statistics, life expectancy and the role doctors play in a patient’s health.

I don’t mean to give Current Oncologist a hard time. While I can’t forget the fatalistic way she told me how long I have to live, handing a secondary cancer diagnosis to a 28-year-old must be an awful experience and possibly on that day she just didn’t handle the situation very well.

A different oncologist at the same hospital also diagnosed me with months to live rather than years. Maybe they’ll be proved right, but it seems a very demoralising thing to tell someone when they could be wrong. It’s an incredibly difficult balance to strike for a doctor.  A patient must be fully aware of the seriousness of their illness but should that be spelt out by giving a time frame?  I wonder if a doctor would bet their own life on their prediction being right?

Current Consultant couldn’t give me six months in that initial meeting –four and a half months down the line I’m responding to chemo and feeling and looking well. In ‘Love Medicine and Miracles’ Bernie Siegel says that, “The physician’s habitual prognosis of how much time a patient has left is a terrible mistake.  It’s a self-fulfilling prophecy.  People who are passive and who like their doctors often die right on schedule, as though to prove them right.”

The fact is, no one knows how long I have left or how the cancer I have will develop.  I’ve never had this disease before so the doctors have to rely on statistics. If you are told you have a certain amount of time and accept that; stop making plans for the future and cease looking forward to tomorrow then what kind of message is that sending to your body?

Professor Hope told me that he has known people with the extent of cancer I have who survive for years on the chemo I’m on, then switch to another chemo for years, and then if I stop responding to either of those I can try a trial. That’s a very different scenario to the doctors at my current hospital.

A couple of weeks ago I saw a psychologist at a cancer support centre in Hammersmith called Maggie’s (more on this amazing place in a future blog). I told him I had started yoga and was meditating, almost apologising for what some might see as naive optimism. “I know it’s all pie in the sky stuff, but I feel it’s helping.”

He corrected me immediately, “It’s not pie in the sky. Studies have shown that yoga and meditation can help improve the quality of life for cancer patients.”

I warmed to him and his open-minded approach. He explained that of course there are exceptions to the rule – that to get to any statistic you need extremes of one end of the scale to the other; there was nothing to stop me from being at the ‘fuck you, cancer’ end of the scale.

I can’t explain how grateful I was for a professional to tell me that I have the right to feel optimistic about my outcome.  He appreciated that I had enough intelligence to realise the severity of my situation – just because he told me I could outlive the statistical expectation didn’t mean I would take that as a foregone conclusion.

I told him how let down I’d felt by the negativity from my current hospital and he asked me if I thought I would benefit from a change of doctors. When I think about why I hadn’t done this when I initially sought a second opinion I realise it was because of fear, and to some extent laziness; getting to grips with new hospital staff, new surroundings, different days for appointments.

I’ve now decided to take that leap and change hospital. This week I signed up to Professor Hope’s NHS surgery. I don’t want to be another statistic and don’t intend on being treated like one.

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57 Comments (+add yours?)

  1. Julia
    Oct 06, 2011 @ 23:11:37

    Hi Ellie, my name is Julia and I’m from Spain (Valencia), I’m Tom’s friend. I’m sorry to not express myself well in your language, I have forgotten the English, I need to practice.

    I want to tell you that look me really courageous. Envy your strength, and hope you have faith. It follows that strength, joy, love and your positivism and conquer.
    You not satisfied with what you say doctors may not know how is a person in their individuality. Each person is a world in joy and in disease and you’re only: you want to fight and live, and that is the best medicine.

    A kiss and a hug from Spain

    Reply

  2. Frances Pringle (@FrancesPringle)
    Oct 07, 2011 @ 07:26:53

    This is my favourite blog title of all time. Good decision… it must have taken a lot of courage. x x

    Reply

  3. Becoming herself
    Oct 07, 2011 @ 07:32:29

    Siegel’s quote is fascinating. I’ve read Armstrong’s book about his experience with cancer; his recovery from extreme near-death illness confounded everyone and all predictions; an amazing and inspiring story. (As is yours.)

    Reply

  4. Midge
    Oct 07, 2011 @ 14:16:20

    I think sometimes a bizarre embarrassment at the prospect of being wrong stops us from assuming the best, rather than preparing for the worst. Well sod if if imagining the best case scenario makes each day worth living. Doctors will admit they can only say what is ‘likely’ ( a very weak word in my opinion) not what is absolute. But I will stop now as I am preaching to the converted.

    Reply

    • Ellie Jeffery
      Oct 08, 2011 @ 17:35:17

      I agree wholeheartedly. Even when writing that entry I thought, ‘I hope I’m not tempting fate here’ – I’m not sure if it’s a British thing of not daring to be brazen enough to say I can beat this! Assuming the best is what keeps me going, otherwise I think I’d struggle to lead any kind of life with a death sentence hanging over me. Thanks for your comment x

      Reply

  5. Chris
    Oct 07, 2011 @ 23:14:54

    I lost a beloved sister-in-law to secondary breast cancer a little more than three years ago. She was of a generation raised to believe that “doctor knows best.” She never questioned anything. Her GP was god. She would not seek a second opinion at any stage. The NHS treated her like garbage. When she was told to put her affairs in order, she did just that, then folded her tent and stole away into the night. She gave up, as she was conveniently supposed to do. Thank god for people like you who rail against going gently into that good night.

    Reply

    • Ellie Jeffery
      Oct 08, 2011 @ 17:46:41

      Hi Chris,
      I’m so very sorry for the loss of your sister-in-law. I do wonder how many women and men who are dealt a poor prognosis just accept it – possibly because they’re too tired to ‘kick up a fuss.’ It’s not easy to disagree with a doctor – especially when you’re brought up to respect authority and think that medics must know best. I think the disparity between Current Consultant and Professor Hope’s attitudes to my prognosis prove that one man or woman’s opinion isn’t definitive. Thanks for reading the blog and commenting, Ellie.

      Reply

  6. laura
    Oct 11, 2011 @ 10:23:01

    i agree, doctors don’t know it all……

    last year i was given a 1 in 3 chance of surviving 2 nasty fat blood clots on my lung, and they were very rude to me in hospital, not to mention blunt.

    they told me to abort my 6 week old fetus as it was too dangerous to carry on with the pregnancy.

    a year later i have a chubby baby asleep on my chest.

    i have every faith that you’ll be ok Ellie, how are the wedding plans ? I keep thinking about you! can’t wait to see the pics!!!

    Reply

  7. Robyn
    Oct 11, 2011 @ 15:58:12

    Hi Ellie,

    I just read your article in Grazia with my breath held and tears rolling down my face. I lost my mum almost 3 years ago from Secondary cancer – she had been diagnosed with Breast Cancer aged 30 and it reappeared and spread 19 years later. In 2005 she was given 6 months but we were lucky to have another 4 years.

    I too was diagnosed with breast cancer last June aged 32- although apparently it is inconclusive if my cancer is genetic…… A week ago when seeing my oncologist for what i thought was a routine appointment he advised me that there had been something on my liver last year that is now not there and they were concerned. After a few days of near hysteria things or should i say I have calmed down and i am now waiting on the MRI Results.

    I think the way you are dealing with this is marvalous!! Why sit back and let life pass you by? Enjoy everyone minute of your planning and especially enjoy your big.

    I wish you and Tom all the luck in world and will be checking in to see how everything is going!

    x

    Reply

    • Ellie Jeffery
      Oct 11, 2011 @ 17:01:59

      Hi Robyn,

      After reading your comment you’ve got me crying too! I’m so sorry for the loss of your mum and then having to deal with a breast cancer diagnosis yourself must have been very frightening. I hope the MRI comes back clear, if it doesn’t and there’s anything I can do to help then please get in touch.
      Ellie x

      Reply

  8. Jodie
    Oct 11, 2011 @ 18:12:02

    Dear Ellie
    Just read your story in Grazia and the rest of your blog. So touched by what I have read. You have a fantastic attitude and I really admire the way you have taken control of your treatment. Just wanted to wish you well and am hoping the old lady’s prediction in the waiting room comes true xx

    Reply

  9. Maire McCrear
    Oct 11, 2011 @ 18:56:06

    My thoughts are with you, you have great inner strength, you are an inspiration. Keep strong, you deserve so much health and happiness. Go Girl xx

    Reply

  10. Maria Jackson
    Oct 11, 2011 @ 21:31:14

    Hola Ellie, your story has really touched my heart. I read your story in Grazia last year and reading it back today just shows what an amazing strong person you are. Your willingness to remain positive it’s something to admire. As I read your story with my husband all I could think and wish is for you to get better, and have a brilliant future with Tom. You and Tom deserve the world and more, Keep strong Ellie and we have you in our thoughts xxx Maria and Adrian

    Reply

    • Ellie Jeffery
      Oct 12, 2011 @ 08:26:11

      Thanks for such a kind message Maria. I can’t explain how grateful I am for all the best wishes I’ve been receiving. I hope you can keep on following my story for years to come! x

      Reply

  11. Rachel
    Oct 11, 2011 @ 22:20:14

    Once again another amazing blog Ellie. I have a medical background myself and think it is very interesting and true that people can respond to their doctors predictions as though they are doing as they are told. I truly believe that somebody with your logical/optimistic way of thinking and pure determination can and will give cancer a run for it’s money (for want of a better phrase). You are truly inspirational. Much love.xxxx

    Reply

  12. Laura
    Oct 12, 2011 @ 12:40:31

    Hi Ellie
    I saw your article in Grazia and immediately came to your blog and read every post. You are awe inspiring in the way that you are handling this and I spent time praying for you and reflecting on the tremendous way you are coping.
    Best wishes

    Reply

  13. Ila
    Oct 12, 2011 @ 14:07:21

    Ciao Ellie
    Amazing post and blog!
    You’re right to have chosen Doctor Hope – I wish I had met someone like him for my mum as well.
    I’ll follow your blog and pray for u.

    Keep strong

    Ila

    Reply

  14. Alisha
    Oct 12, 2011 @ 17:22:15

    Good Luck Ellie. I am visiting from Australia and just read the Grazia article. You are an inspiration. Keep fighting, my Mum has a friend who decided after her first diagnosis she would decide when her date was not a doctor or for that matter cancer. She has been fighting for as long as I can remember. When I get home I plan to visit her and take your article. I already know what she would say to you. Keep up the fight and do what is best for you.

    Reply

    • Ellie Jeffery
      Oct 12, 2011 @ 18:21:53

      Thanks Alisha, it’s nice to get another Aussie reader to the blog. My brother lives in Sydney so he’s spread the word down under for me. I hope your mum’s friend continues to fight and stay healthy and happy, Ellie x

      Reply

  15. Lindy
    Oct 12, 2011 @ 17:25:52

    I’m sorry to hear you were given a time limit. My husband is a cancer surgeon and will only give a time limit if really pushed by the patient, and then he will stress it is only guesswork. I wish you huge luck. I am a surviving cancer patient myself.
    Lindy x

    Reply

    • Ellie Jeffery
      Oct 12, 2011 @ 18:24:29

      Hi Lindy, thanks for reading the blog. Your husband sounds like he’s got the right attitude – after all, who knows how long any of us have left! Long may your health and cancer survivorship continue, Ellie x

      Reply

  16. Donna Baxter
    Oct 12, 2011 @ 19:03:34

    You are an absolute inspiration wish you well and with your attitude and determination you deserve longevity and happiness 🙂

    Reply

  17. Jo
    Oct 12, 2011 @ 19:17:37

    Hi Ellie, I too read your article in Grazia and remembered your story from last year, as did hubby (uncharacteristically) Last week much was made about Steve Jobs’ inspirational speech at Stanford some years ago, I think you are the embodiment of that fighting spirit. You keep raging against the machine woman ! Lots of love and the very best wishes on your engagement. Jo xx

    Reply

    • Ellie Jeffery
      Oct 12, 2011 @ 22:26:14

      Hi Jo,
      That’s a big compliment – thank you. I’m really glad that so many people have managed to read the blog because of the article in Grazia. Thanks for such a lovely message, Ellie x

      Reply

  18. Phoebe
    Oct 12, 2011 @ 20:51:48

    Hello there –
    I’m a complete cliche – I read your piece in Grazia (as, I imagine, did many). I’m gunna put all the words everyone says, ‘your positivity is a gift’,’ cancer doesn’t define YOU or who you are’, ‘you’re an inspiration’ but I want you to know you are. And I’m glad you’re getting on with it. I wish you health, happiness and your wedding day to be surrounded in light. Much Love xoxo

    Reply

    • Ellie Jeffery
      Oct 12, 2011 @ 22:32:01

      Hi Pheobe,
      Thank you for reading the blog and all your good wishes. You say your word are cliches but it doesn’t take away how much I appreciate the sentiment. Thank you, Ellie x

      Reply

  19. Elizabeth
    Oct 13, 2011 @ 05:41:35

    Hi Ellie,

    I just read your article in Grazia and wanted to say thank you for such a candid and inspirational piece. You are made of very strong mettle! Defiant. I know from personal experience that positive thinking really can make all the difference and you are doing just that! My mother has had cancer three times, the first way back in 1988. She is adamant that staying positive is vital. She used to get through it by imagining it wasn’t actually happening to her. Your fighting positive attitude reminds me of her. I read alot about cancer treatments etc and came across a couple of things: The China Study – you may have heard of this, makes for interesting reading, nutrition based stuff, who knows it might help. Also years ago London Tonight made a programme about a treatment called CV247 developed by a vet and used eventually to treat human tumours. Best wishes with everything and of course the big day! Jo x

    Reply

  20. Nanno
    Oct 13, 2011 @ 13:02:17

    Hi Ellie,
    Just read your article in Grazia as did many. What you are doing is inspirational, to stand up and be counted and not ‘writtenoff ‘ as you so aptly put it must require much courage and i think your attitude and positivity will not only help others but will encourage others to ask questions which i believe not enough people do. We are all only human after all and what people forget is that doctors are human too!!
    I read a book recently by Bernadette Bohan called ‘The Choice the Programme’ you most probably already know of her but if you don’t take a look. I was totally blown away by her experience and positivity too.
    I wish you congratulations on your engagement and will look forward to seeing the photos in June. Best wishes and love

    Reply

  21. Kerry
    Oct 13, 2011 @ 16:48:33

    Dear Ellie
    Like many others I have just read your article in Grazia and also remember you from last year as you touched me then too. As I started writing to you I wasn’t exactly sure what to say, other than to acknowledge that the mechanism you are successfully using to cope with the awful siutation you find yourself in is without doubt made of pretty tough stuff! I always find it amazing that in absolutely devastating situations somehow we DO manage to find that inner strength and it is so infectious. I hope anyone else reading your blog who is facing a similar challenge is infected with your fantastic ‘fuck it’ attitude!
    I’ve remembered what I wanted to say to you….your hair looks amazing – I have been unsuccessfully trawling the net for examples of short hairstyles (mine is short anyway, but I want to go shorter) and only now after seeing Grazia do I know what I’m asking for tomorrow at the hairdressers!!! Sorry to be boringly girly 🙂
    Wishing you all the best and I’m sure you will see those flowers you have picked out next June.
    Love, Kerry

    Reply

    • Ellie Jeffery
      Oct 13, 2011 @ 16:55:57

      Hi Kerry,
      What a lovely message to come home to! I have to agree, I think humans are made of pretty strong stuff and for the most part can cope with a lot of shit that is thrown our way. Thanks for the hair compliment. I would never have dared go short if it hadn’t all fallen out – now I’m just grateful it all came back! Happy haircut tomorrow and thanks for reading! xx

      Reply

  22. Vix LR
    Oct 14, 2011 @ 01:17:06

    Dear Ellie

    FUC ….what a motto! and what an inspiration.

    I naively looked at statistics when my Mum was diagnosed with Breast cancer three years ago and was floored by the negativity you can see in maths. However, since then I have met and read about people who have beaten the statistics that were applied to them and most of them are postive FUC type people. Hope is in people and maths never tells a full story!

    My husband’s Godfather Andrew Ripley, the former England Rugby player, was one of these people who attacked cancer with agression. Andy’s prostate specific antigen (PSA) reading when he first contracted the disease five years ago was 133. Most people come in at around five. Within two years Ripley had got it back down to zero!

    Sadly Andy died last year (after a long battle) but he was your kindred spirit in terms of attitude and his way of viewing things prolonged his life. He wrote this in the book he published about his journey :

    “Dare we hope? We dare. Can we hope? We can. Should we hope? We must, because to do otherwise is to waste the most precious of gifts, given so freely by God to all of us. ”

    I can’t wait to read about your wedding next year. You are right to wait – there is so much to do and it is such a magical time!

    Love Vicky

    Reply

    • Ellie Jeffery
      Oct 14, 2011 @ 08:45:12

      Hello Vicky,
      Andrew sounds like an amazing man and the that quote is inspirational. Thanks for reading the blog and sharing Andrew’s story. Better to go down fighting and letting every single person in your life know you did your very best to give cancer a run for it’s money! Thanks again, Ellie x

      Reply

  23. Jill
    Oct 14, 2011 @ 05:07:13

    Hi Ellie,

    I’m sure I have waved and said hello to you in the background on Skype from Oz in JJ and Jordan’s flat. Just wanted to say that I check back weekly for blog updates. Your blog inspires me in so many ways but primarily it’s the positivity you show. You always make me remember what is truly important in life and how we should all live our lives. Thank you for that! Jordan and I think of you constantly and send our thoughts, best wishes and positivity to you  Jx

    Reply

    • Ellie Jeffery
      Oct 14, 2011 @ 08:47:26

      Hi Jill,
      Thank you for continuing to check in on the blog and thanks for leaving such a lovely comment. Having cancer has certainly made me think about how I live my life – in fact the next blog is about just that! I hope you and Jordan are well, Ellie xx

      Reply

  24. Cait
    Oct 14, 2011 @ 18:39:06

    You have a great attitude Ellie. I would love to read the article. Is it online?

    Reply

    • Ellie Jeffery
      Oct 14, 2011 @ 23:50:04

      Hi Cait, I don’t think it is I’m afraid. To be honest though it’s just an edited down version of the blog – the magazine is out until Monday. Thanks for taking the time to read the blog, Ellie x

      Reply

  25. tomstaniford
    Oct 14, 2011 @ 19:35:10

    Hi Ellie,
    I was directed her by Orla who said I should have a read of your blog.
    I just wanted to let you know that I’ve really enjoyed reading your words. I’m 22, so you’re only 6 years older than me- and yet to speak with a wisdom and clarity that is far beyond anything I can dream of attaining thus far.
    It’s wonderful that you have the courage and skill to put down your thoughts so beautifully, and I feel very privileged to read them.
    I’ll be checking back to read up on your latest posts regularly, but also to reassure myself that you are beating cancer as consummately and completely as I truly believe you are capable of.

    Tom

    Reply

    • Ellie Jeffery
      Oct 14, 2011 @ 23:56:03

      Hi Tom – wow, what a lovely message to receive. I hope I’ll prove you right and you get bored of my ramblings ten years from now! Thanks for reading, Ellie x

      Reply

      • Elaine
        Oct 16, 2011 @ 17:18:55

        Hi Ellie ive been reading grazia for years and like many others I remember your article and I’m so sorry to now read that the cancer has returned. My father was taken very ill last January and we were told he had days to live. He fought and whilst he didn’t fully recover he did give our family another wonderful 18 months. He died 12 weeks ago but we believe that life and love kept him going. I wish he could have read your article he would have loved your courage and strength! You are an inspiration and I wish you every bit of happiness and kindness as you certainly deserve it. I will continue to read your blog x

      • Ellie Jeffery
        Oct 16, 2011 @ 19:07:59

        Hello Elaine,
        I’m sorry to hear about your father but it sounds like his fight gave you plenty to be proud about. Thank you for reading the blog and leaving such a heartfelt message. Ellie x

  26. Debbie davies
    Oct 14, 2011 @ 21:03:14

    After no family history I was diagnosed with breast cancer in may 2009. After 5 months of horrific chemo,15 radiotherapy sessions and a mastectomy and reconstruction I don’t think I couldn’t have got through it without being positive. I don’t think it’s something you can choose to be I just feel amazed that’s how my brain dealt with it. Ellie,your mindset is amazing and will help your partner and your family so much and why shouldn’t you enjoy and plan your life with as much normality as possible. If we all stopped to think about our own mortality then we’d lose our minds! Life is for the living and you are doing just that.so glad I read your Grazia piece.all my love and strength Debbie xxxx

    Reply

    • Ellie Jeffery
      Oct 15, 2011 @ 00:01:50

      Hi Debbie,
      I have to agree with you, I think it’s amazing what we can deal with when faced with it. If someone had told me two years ago what was ahead I think I would have had a lot less faith in my ability to deal with it all than I do now. I hope your healthy recovery continues, unless you go through chemo you can never really know how hideous it is! Best wishes, Ellie x

      Reply

  27. Sarah Q
    Oct 14, 2011 @ 22:44:17

    Ellie I have just returned from Singapore and got back into reading UK magazines and saw your piece in Grazia. I remember your original article and two things struck me; how bloody brave you seemed, and what a REALLY bright coat! Stay at the ‘fuck you, cancer’ end of the scale and fight. Fight with everything you have. I just wanted to take the time to say hello. All the very best, Sarah PS cute hairstyle missus!!

    Reply

    • Ellie Jeffery
      Oct 15, 2011 @ 00:03:50

      Hi Sarah – welcome back to the UK! Firstly, thanks for the hair comment! And secondly, thank you for leaving such a positive message. I intend on staying at the FUC end of the scale for as long as possible! Ellie x p.s the stylist put me in that coat!!! xx

      Reply

  28. neeltje
    Oct 20, 2011 @ 12:51:23

    Hi Ellie,

    I red your story in Grazia the plain. I just wanted to let you know, the love between the two of you really touched me. I’m happy to join your blog.

    I think about you.

    Love Neeltje (34), Amsterdam

    Reply

  29. Clare
    Oct 28, 2011 @ 07:17:23

    Hi Ellie

    I feel like I should be jumping for joy with my positive scan results but still can’t get the stats out of my head. I know it sounds odd but sometimes it’s harder to get no news than good then bad. Must be having a glass half empty day.

    My husband proposed to me during treatment and we planned to get married within a year. Part of me wondered whether I would get there so get putting things off. Big mistake when 3 months before the wedding and no dress!

    Keep planning and hoping – forget stats, I know that you and Tom are meant to be.

    Love

    Clare x

    Reply

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