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Coming Sunday, August 21, 2016   

From Both Ends of the Stethoscope by Dr. Kathleen Thompson

 

 

 

 

33 Comments

  1. Anti-Cancer Club
    Anti-Cancer Club / June 27, 2016 at 9:41 am /Reply

    I just started reading this book and it is excellent. The author walks you through her emotions as she steps through the British health care system with a breast cancer diagnosis. It’s one of the clearest descriptions of the diagnosis process I’ve ever read. And I totally relate to her internal battle to take control! Just like in the U.S., the medical system is totally user unfriendly and depends on the patient to dictate the quality of their care and outcome!

    Great choice Robin for a first book! Will have more to say as I read!

  2. Robin McGee / June 27, 2016 at 10:05 am /Reply

    Glad to hear you are enjoying it! I particularly liked the way she characterized her emotions, particularly those when she was negotiating with her healthcare providers – her tentativeness, fear of reprisal, fear of making the wrong choice, etc. All of us can relate to those struggles. There were times when my heart was actually racing reading it, when doctors were late showing up to critical procedures and she was needlessly terrorized.

  3. Anti-Cancer Club
    Anti-Cancer Club / June 27, 2016 at 10:50 am /Reply

    I am also finding the story fascinating in that it is from a DOCTOR’S point of view. It makes one realize that no matter who your are, you are in a similar boat when it comes to navigating cancer treatment and you need to do your own homework and take charge, step by step.

  4. Kathleen Thompson / June 27, 2016 at 1:49 pm /Reply

    Thanks for your great comments on my book. Something which has surprised me is the comments from US and Canadian readers. I thought some of the challenges I experienced were quite UK-specific, and in N America, where there is more opportunity to choose your doctor and hospital, things would be easier. However, as I learned from Robin McGee’s Cancer Olympics, this is clearly not always the case, and other N American readers have confirmed that aspects of my experiences are universal. Overall I did have very good care, and things can go wrong wherever you are. The main point for me is that people need to know how to deal with problems with their medical care and a strong driver for this book was to give people the knowledge and tools to do this.

  5. Anti-Cancer Club
    Anti-Cancer Club / June 27, 2016 at 3:46 pm /Reply

    As I look back at my cancer experience to date, I am totally convinced that my drive to take charge, to get information (and see real luck!) have made a difference! I would tell everyone, whatever your circumstances, GET CURIOUS AND TAKE CHARGE OF YOUR HEALTH! You CAN do it. This book is a great example of one woman, stepping up to the plate, to be sure she got the care that she felt was right for her! Intuition matters, even if no one else seems to share your language.

  6. Kathleen Thompson / June 28, 2016 at 2:27 pm /Reply

    Sometimes I think we need ‘permission’ to take charge of our medical care. For many of us, our natural reaction is to be submissive in the hospital situation because we are dependent on the staff to ‘save us’, and yet it is the more assertive people who demand and often get the most attention. I certainly learned I had to remind myself that I was just as important as everyone else.

  7. Anti-Cancer Club
    Anti-Cancer Club / June 28, 2016 at 5:43 pm /Reply

    I think I come at it from a different perspective. My ex-husband was a surgeon so I know what (fill in your word of choice!) these people really are. 🙂 They’re quite human, in spite of their egos and in spite of hiding behind their coat and name tag. That irreverence has served me well in dealing with the medical establishment. It’s also made me comfortable asking questions, seeking outside opinions, and arguing with my medical team when necessary.

    One story that I like to share that speaks to both irreverence, curiosity and luck:

    I went to Stanford for a second opinion and to apply for a vaccine trial, and was very fortunate to meet Josh Brody, MD, a fellow at the time. He was running several hours late (!) but when he finally arrived, he apologized and gave me his FULL attention.

    I had a large tumor growing on my left cheek. The other tumors weren’t immediately a problem–I could “watch and wait” for a bit. This one needed attention. Almost as a throwaway, he said to me “Do 2 by 2.” I asked what that was. “Two units of gray (radiation), twice. Lymphoma tumors are very sensitive to radiation.” I jotted the advice down in my notebook and returned home.

    The local radiologist (a TOTAL disaster) insisted on 35 units of gray for 17 consecutive days! And, she advised me, it was only palliative.

    I battled; I fought; I refused; I called her bluff. She was unknowledgeable and intimidated by the Stanford doctor’s recommendation. I won and never saw her again. Her insecurity and total lack of any professional curiosity meant she missed out on a chance to learn, and to benefit a patient in a major way. I shudder to think about the long term repercussions of such a needlessly robust and uninformed course of radiation would have caused!!! And I shudder to think she is still in practice.

    Maybe marrying the surgeon had its merits after all…

  8. Kathleen Thompson / June 29, 2016 at 12:49 am /Reply

    Wow. Spine-chilling. Well done for persisting, but we really shouldn’t be having to do this when we are ill should we? You and I both have some inside knowledge of hospitals etc which helps, how hard is it for people who don’t? This is one of the major reasons why I felt compelled to write a book for these people

  9. Anti-Cancer Club
    Anti-Cancer Club / June 29, 2016 at 6:16 am /Reply

    I wish I could “mind meld” my experience for people. It frustrates me to no end to see everyone re-inventing the wheel, again and again, with each new cancer diagnosis. Something has got to change. I hope that by putting out ongoing, quality information from a number of sources, that I can at least make the learning experience shorter and more effective for others. This book is one such resource.

  10. kathleen Thompson / June 29, 2016 at 7:16 am /Reply

    You are doing a fantastic job

  11. Anti-Cancer Club
    Anti-Cancer Club / June 30, 2016 at 4:08 pm /Reply

    Likewise! Reading more tonight…

  12. Kathleen Thompson / July 2, 2016 at 12:04 pm /Reply

    New healthcare guidelines for BC in the UK from NICE – National Institute for Heath and Care Excellence – hopefully should improve care for people with breast cancer https://www.nice.org.uk/guidance/QS12/chapter/Update-information Moving towards better care for people with cancer hopefully

  13. Anti-Cancer Club
    Anti-Cancer Club / July 2, 2016 at 12:12 pm /Reply

    I just answered a tweet from a group that does Diep flap reconstruction. Would a blab on this topic–or the topic of reconstructive options in general–be useful?

  14. Kathleen Thompson / July 3, 2016 at 12:27 pm /Reply

    I think that would be an excellent blab – just so that people really understand what options they have, the pros and the cons from both an anti-cancer perspective and a cosmetic perspective. The Diep flap group should be good – I think they and I follow each other. Alternatively Liz Riordan may do one for you?

  15. Anti-Cancer Club
    Anti-Cancer Club / July 4, 2016 at 9:48 am /Reply

    Hi Kathleen,

    Just finished reading your wonderful book–I’ve already recommended it to several people. I was so glad you included the sections on anticancer living and mentioned David Servan-Schreiber’s book (we’re reading his book in November). Having a sense of control is so important–and taking charge of your health gives you that, even in the face of cancer.

    I was wondering–and this is a question for everyone–as a result of this experience, do you interact with the world differently? Are you more present, less likely to make long term plans? How have you integrated the uncertainty into your daily life? Or do you feel that it’s all behind you and life’s back to normal?

  16. Kathleen Thompson / July 4, 2016 at 12:40 pm /Reply

    I’m so pleased you found the book useful and thanks so much for recommending it. Yes, I think David Servan-Schreiber was amazing – and his comprehensive summary of the available research on all aspects of life-style and how it can help us keep cancer at bay is compelling. I would recommend everyone to read his book and I am delighted that you are featuring his book – I will look forward to it.
    Yes I do interact with the world differently, I do still make long term plans, but I allow myself to do so many more things. In my life before cancer I would always have a reason not to do something really great – it costs too much or I don’t have the time were the usual excuses. Since finishing my cancer treatment I have attended a friend’s wedding in Barbados, cycled in Kerala and climbed Mount Kilimanjaro and I am generally more likely to grab life’s opportunities because ‘I’m worth it’ 🙂 How about you?

  17. Anti-Cancer Club
    Anti-Cancer Club / July 4, 2016 at 2:51 pm /Reply

    I don’t look to some future tomorrow. I have become extremely present moment oriented. My situation is a bit different in that I continue to live with (incurable) cancer. In this moment, I am grateful. If I allow myself to get out of the moment, it’s too easy to find myself waiting for the other/next shoe to drop. Living in limbo with a rare cancer, year after year (thankfully so far!) is an essay in and of itself!

    How was Kilimanjaro? How long did it take to hike? Sean Swarner (@SeanSwarner), a childhood cancer survivor with the capacity of only one lung, leads teams every year. He’s there now, and we will be trying to connect with him via Blab. His hashtag, which I love, is #KeepClimbing.

    I think soaring New Zealand is next on my list…and while I’m there, Sydney, the Australian Open and visiting friends. I’ve always wanted that entry in my log book! Must make it so!

  18. Anti-Cancer Club
    Anti-Cancer Club / July 4, 2016 at 2:55 pm /Reply

    On my bucket list, and my idea of FUN!

  19. Stephie Zimmerman, MSN
    Stephie Zimmerman, MSN / July 5, 2016 at 1:52 am /Reply

    I began my reading of Dr. Thompson’s book this early morning; I was struck in the prologue as I read, “my left hand gripped the coarse material of the hospital gown as if it was a survival rope. My right hand was visible to him [the physician] and the nurse, so I forced it to relax”.

    I visualized that scene in my mind’s eye and wondered in my heart was that intentional. The choice of words suggests that it was as the author notes that her right hand was visible to the care providers. Thus, the forced relaxation of the hand.

    Would you speak to this response on your part in those moments, please?

  20. Anti-Cancer Club
    Anti-Cancer Club / July 5, 2016 at 2:08 pm /Reply

    Hidden terror, I suspect, covered with a thin veneer of calm!

  21. kathleen Thompson / July 7, 2016 at 1:17 pm /Reply

    Hi Stephie
    Yes it was exactly as you said. I always think it is a British trait, but I’m beginning to think it is more universal. Even in situations where we would be perfectly justified in showing upset and emotion – we have just learned we have cancer for heaven’s sake – there is that urge not to ‘show oneself up’ or look a fool – the need to put on a brave face, not to show your emotions. I didn’t want the staff to see my fear, so I forced my hand to relax, because they would see it.
    And then we wonder why people don’t appreciate how scared we are.
    I like Anticancer Club comment – covered by a thin veneer of calm – that’s about it

  22. Kathleen Thompson / July 7, 2016 at 1:19 pm /Reply

    Hi Stephie
    Yes it was exactly as you said. I always think it is a British trait, but I’m beginning to think it is more universal. Even in situations where we would be perfectly justified in showing upset and emotion – we have just learned we have cancer for heaven’s sake – there is that urge not to ‘show oneself up’ or look a fool – the need to put on a brave face, not to show your emotions. I didn’t want the staff to see my fear, so I forced my hand to relax, because they would see it.
    And then we wonder why people don’t appreciate how scared we are.
    I like Anticancer Club comment – covered by a thin veneer of calm – that is about it.

  23. Kathleen Thompson / July 10, 2016 at 2:51 am /Reply

    Just noticed I missed your comment, Anticancer Club, apologies I missed it. I think your attitude to living with cancer on an ongoing basis is is just right. It is extremely difficult to ignore a Sword of Damocles dangling over your head, but if one focuses on it, one misses out on the wonder of life. Since having cancer I really try to remember how amazing this life is, and savour every day.
    In answer to your questions, Kilimanjaro was amazing. The group all helped and supported each other – and it is a great leveller, because the fitter and less fit people all had their own challenges – it wasn’t necessarily easier for anyone. Iw asn’t particualarly fit – I had been quite unwell for the year before I went, but the leader encouraged all of us, and if we were prepared to put the effort in, he made sure we had the confidence and support to do it. The Tanzanian guides and porters were also amazing and looked after us with kindness and good cheer. I did the Lemosho route which was 5 and a half days up and 1 and a half days down. It is classed as one of the harder routes, as it is longer, but allows more time to adjust to the altitude. The peak was amazing – watching day break amongst the glaciers and seeing for miles and miles over Africa. I was so lucky to have the experience. To be honest – if I hadn’t gone through cancer, I would have found a 1000 reasons not to do it – too expensive, no time etc etc – but I definitely have more of a ‘take the moment’ attitude nowadays. I will look out for the Sean Swarner blab – that is amazing – to travel to high altitude with one lung is a particularly difficult challenge.
    Yes make the New Zealand soar happen – you are worth it!

  24. Anti-Cancer Club
    Anti-Cancer Club / July 10, 2016 at 12:18 pm /Reply

    Aiming for 2017! Living NOW is definitely one of the lessons of cancer.

  25. Kathleen Thompson / July 11, 2016 at 1:05 pm /Reply

    Go for it girl. It will be amazing 🙂

  26. Stephanie
    Stephanie / July 21, 2016 at 6:59 pm /Reply

    I highlighted the following sentence in Chapter 11 as I wanted to sit with the way it hit me and why it hit me the way it did:

    “I still couldn’t adjust to the fact that I was ‘one of them’; a cancer patient.”

    1) As a cancer survivor, I can appreciate and empathize with how difficult an adjustment it is to realize that one has cancer.

    2) the ‘Other Guy Rule’: it’s always the other guy/gal until it’s you. In this case, I found myself wondering if there is another layer here in terms of only they (patients) get cancer, are vulnerable to cancer NOT us (doctors). Was there actually some degree of belief that doctors, is there a belief among doctors that they are immune from such a diagnosis or because they are doctors their experience is in some way unlike what we (patients) experience.

  27. Anti-Cancer Club
    Anti-Cancer Club / July 23, 2016 at 8:08 am /Reply

    David Servan-Schreiber also had a harsh realization when he became “one of them”. I think that for many physicians, they live safely (an illusion of course) behind their status of doctor. The white coat, the professional designation, the deferential staff…these keep the patient experience at bay. Imagine having all your illusions of invincibility vanish and suddenly in an Alice in Wonderland transition, you’re on the wrong side of the looking glass!

    Not suggesting this personally, Kathleen. Just a general observation about all of us. We all have our illusions–my car, my possessions, my school, my neighborhood, my position–that allow us to turn the other way in an attempt to find shelter. You offer a fascinating and honest look at the disappearance of the illusion of invincibility, and what follows–the keen awareness of one’s humanity and mortality.

  28. Kathleen Thompson / July 24, 2016 at 1:22 pm /Reply

    Hi Stephie, Anticancer club – you are both absolutely right. I guess it is a human trait, not just a doctor trait – ‘we are going to live forever’ … ‘bad things happen to others’ – as you say Stephie – the other guy rule. For doctors though, as for all people dealing with seriously ill people, I guess they also have to put up a bit of a barrier to do their job well. If you freaked out every time you saw a patient with a serious illness, thinking you may get it yourself, then you would not be in the best place to provide the help and support which that person needs and expects from you. So a protective mental barrier is not just a human reaction, but actually a necessary one to help you do your job. For me, I found that doing this helped me to show compassion, but prevented me from being dragged down and dragged into the terrible situation. The last thing a sick person wants is for the person treating them to break down in tears and tell them how awful it is. As you say, Anticancer Club, we all use illusions, and in some ways we need them to function, but sometimes they do disappear and indeed we find ourselves frightened and vulnerable.

  29. Anti-Cancer Club
    Anti-Cancer Club / August 1, 2016 at 12:40 pm /Reply

    One of my favorite David Servan-Schreiber quotes: “Being a doctor didn’t stop me from getting cancer.” It says so much, in so few words.

  30. Anti-Cancer Club
    Anti-Cancer Club / August 4, 2016 at 10:21 am /Reply

    An excellent talk by a Liz O’Riordan, a breast surgeon who found herself being a breast cancer patient:

    ideo.associationofbreastsurgery.org.uk//Webcast2016May/Session_15_0955%20Elizabeth_Ball.mp3

  31. Kathleen Thompson / August 15, 2016 at 4:15 am /Reply

    Yes it is so good to have people like Liz O’Riordan, who treats people with breast cancer every day talking about her experience. In some ways her experience was different from those described in my book, as she was treated by colleagues – which I am sure has pluses but also minuses. Looking at her own scans and knowing exactly what they mean must have been very tough. In other ways though I completely understood what she was going through because of my experience.

  32. Anti-Cancer Club
    Anti-Cancer Club / August 15, 2016 at 9:13 am /Reply

    The experiences of cancer are emotional, and even primal. Regardless of the type of cancer anyone has, I think we all share very similar emotional experiences. That is ultimately what binds the cancer community. The intense hope, despair, fear, triumphs along the way…it’s an intense journey for all of us.

  33. Anti-Cancer Club
    Anti-Cancer Club / August 20, 2016 at 4:26 am /Reply

    Looking forward to our real life conversation on Sunday!

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