Podcast: Play in new window | Download
One of the worst side-effects of cancer is that it takes away control and it changes the way you see yourself and the world around you. It’s easy to lose sight of who you really are, and you need to find your way back. That’s what I love about Sophie’s book “The Cancer Whisperer” – it’s all the ways that you can take your power back without being a hero. Sophie shares some fantastic advice and insight that can really help you:
- Dealing with fear that comes with cancer
- On being blindsided by cancer diagnosis
- Keeping your personhood intact
- Dealing with conflicting emotions
- Coming to terms with cancer
- Finding the light amidst the darkness of the dis-ease
- Dealing with moments when life shocks you with an event that you weren’t expecting
- Unique perspective on grief
- and much, much more!
Book Review: The Cancer Whisperer
Episode 005: Become Your Own Case Manager
Joe: Sophie, there’s a metaphor in your book where you refer to cancer as this place on the map where the map runs out. That’s exactly how it feels, like this is the unchartered land. Sophie, what is the first thing you should do to re-orientate yourself in this new world?
Sophie: I think it’s a place on the map where the map runs out. I think it runs out for other people in other ways. We find ourselves in these situations that we have no guidance for, no plan for. A cancer diagnosis is blindsiding. It blindsided me. It really blindsided me. I didn’t really have many symptoms. I think the very first thing we need to do is deal with our fear, because we’re in shock and fear and often in denial at the beginning.
That can take over and start to run the show. I remember when I was diagnosed, I was given lots of leaflets in the British NHS about what to expect from chemotherapy and what to expect from radiotherapy and how to apply for disabled parking, but no one handed me a leaflet with how to deal with my terror, and my grief, and my rage. No one even asked me the question. No one in Britain, in our lovely oncology wards, our stiff upper lips, was even talking to each other about how scared. No one was reaching out to say, “Are you as freaked out as me?” For me, I needed to really confront, challenge, work through my fear before I could do anything that felt remotely powerful in response to my disease.
That’s really why I wrote the book, the help people do that. I have a background in psychology and I have a toolkit for dealing with fear and rage and all of those things. I found it tough. I thought if I found it tough, I wonder who else is finding this tough. Here I am, that’s what I spend a lot of my time doing now, is helping cancer patients work through their fear.
Joe: Yes, that’s fantastic, Sophie. What is the first thing you would suggest to do about fear? What is the first step in the process?
Sophie: I think the first step is to name it, and not go all positive. I meet many cancer patients who instantly get into: I have to be positive and I’m going to be okay, and it’s all going to be fine and I’m going to fight this thing. I’m going to do the battle. I don’t think that thinking helps us at all, I think we need to take some breath into our precious bodies and say: I’m scared. I’m just scared. Most fear, interestingly, is caused by what’s going on in our heads. A cancer diagnosis is frightening enough, because clearly it’s a frightening thing to happen. Then we start telling ourselves things like: I’m a goner.
Or, it’s over for me, I’ve wasted my life. It’s unfair, I’m failing my family, it’s my fault. It’s the world’s fault. I’m powerless, it’s hopeless. I have to do what the doctor’s say. We just get into this, I call it: Mind talk. Where we start predicting the future and imaging what’s going to happen and telling us how terrible it’s going to be to have chemo. We get into this mental spiral of fear, which adds pain to pain and suffering to suffering. We need to learn how to deal what’s going on in our heads when we get a diagnosis. The doctor will say: You have cancer. That’s what I call: A life shock.
You have cancer. Then we give that moment meaning. Cancer is loaded with more terrifying meanings than most words in the English language. We need to learn to deal with what’s going through our heads, what we’re telling ourselves, what we’re predicting is going to happen. We need tools to do that. It’s not simple to describe that in a couple of minutes, but there are tools you can learn for how to deal with your fear. A lot of what we tell ourselves is simply not true. In fact, most of what we tell ourselves is not true.
Joe: Wow, that is so true, Sophie. I think you really captured the fact that cancer really changes your identity. I know that you also mentioned that in your book, that in one point in time, that your doctor said to you, “Do not become a patient.” That advice, what did that mean to you?
Sophie: That was one of the most empowering things. It makes me cry just remembering it. Most empowering things anyone has ever said to me, at the darkest hour of my life. What it meant to me was: Stay a person. Live your life. Don’t give your power to this disease. It was quite an extraordinary thing for a doctor to say to someone. Don’t become a patient. In a way, it’s what propelled me to become a patient activist, because it’s so easy to lose your personhood when you become a cancer patient.
Suddenly, you’re a patient and everyone treats you like a patient. You want to scream: No, I’m still Sophie. I’m still me, treat me as me. I still have a life. It was a very empowering thing to say to me. I didn’t realise it at the time, but by the time I was there in the hospital system, because this was just the diagnosis moment, by the time I was in getting more and more scans, it just stayed with me all the time: Don’t be a patient. Stay yourself. Stay in charge. It was an amazing thing for a doctor to say. I will be forever grateful to him.
Joe: Yes, that’s very powerful advice. The system really doesn’t make it easy for us. That’s why I guess I love your story about how you really put your foot down when you had the call about the radiation appointment. Well, could you talk about that? How was this moment meaningful to you?
Sophie: Well, that man was in my head a bit when I did that. It’s funny, this was quite a controversial thing to do. I didn’t know it was a controversial thing to do. I want to be clear that most of the time, I accept my appointments and I know how difficult it is for these hospitals to plan these things. In that moment, I was coughing blood, I could hardly breathe, I have multiple brain tumours. I have tumours in my spine. I was in deep water. They were pressuring me, you’re got to do this now.
I remember, it’s again, what I call a life shock moment, the nurse handing me my appointment on a piece of paper and saying: Here’s your appointment. I looked at it and I knew inside me that if I fitted my life into my treatments, instead of my treatments into my life, I would be on a very fast downhill spiral psychologically. It was a psychological thing. The truth was, I wasn’t free that day. I wasn’t just being difficult. I wasn’t free that day. I just said, “I’m not free that day. Can I have another date?” She was like, what? I didn’t know it was such an unusual thing. It just seemed like, I’m not free that day, can you find me another date? I think that was the moment that I took my power back from the disease and from the whole system.
It was a turning point for me to say, “No, I’m going to run my life. I’m still in charge of my life. Even if I die, I’m going to stay in charge.” Since then, my oncologist and I have created an amazing partnership and I’m pretty much asked: When are you free, Mrs. Savage. Yes, I think that was the moment I took my power back.
Joe: Yes, that’s very powerful, Sophie, because there are all of these expectations on us placed by the system, that you’re simply supposed to just put up with. I remember, myself, that when I had the call from the oncologist saying, “We need to change your appointment.” There was no consideration. I said to them, look, I’ve just come out of gruelling chemotherapy treatment, I’m going to get my results today. I’m taking time off work, my wife is taking time off work, my mom is coming along. I can’t just change it just because circumstances have changed. I wasn’t being difficult, but it just struck me as there was this no please, no here was what happened, just you have to do this. That just didn’t sit well with me at all.
Sophie: It doesn’t. I think part of this is it’s an incredibly over-stretched system. With over-stretched staff. Thank god they’re there to help us. It’s not necessary. It’s the attitude that goes with it, Joe. There’s an assumption. As you say, a lack of: Can you do this? Can you make this work? There’s the lack of enquiry and the lack of connection. Sometimes a lack of humanity. That is what I think some patients, in a way, they buckle in the face of it. It can be even more dispiriting than the original diagnosis because suddenly someone else is taking over my life and telling me what to do. You can feel like a child again in those circumstances. It takes a bit of backbone to say, “Actually, that’s not okay.”
Joe: Yes, absolutely, because you lose so much control anyway that you have to make a conscious decision, just like you said, about taking it back. The system is really not built for the patient. That’s why you feel powerful. I remember when I was diagnosed, you just feel like this rabbit in the headlights.
Sophie: You do, you really do. There’s not much to pick you up with that side of it. It’s not a doctor’s job to help you through your fear. They’re not trained to do that, but I do think it’s their job to be aware that you’re scared, that you have emotional needs as well as psychological needs. To be sensitive to that and to point you in the right direction for support. I don’t think that’s a complicated thing to do.
Joe: Yes, that’s exactly right. You bring up a really interesting point, Sophie, because I remember that at no point did it occur to me going through treatment, or actually to any of the specialists, that maybe I’m struggling psychologically with it, and maybe I need some external help. There was nothing in the system that said, “How are you doing? Are you actually coping?”
Sophie: There are two charities, Penny Bron and Maggie’s, who give patients psychological and emotional support.t Maggie’s cancer centre is situated on hospital grounds. I wish there was one on every hospital ground in the land, I really do. I gave a talk at Maggie’s cancer centre, I think it was the one in Oxford, and it had been open for two or three years. It was on the hospital ground. No oncologist had ever walked through the doors to say, “What do you do here?” Had ever walked in to say, “What do you do here” and to find out what they offer. That was hard for me to fathom.
Joe: That’s just so disconnected.
Sophie: It’s so disconnected. It’s on the doorstep. I think they send their patients to Maggie’s because they know to say, “What are you doing? What are you giving my patients?” I found that fascinating. That’s how disconnected it can be.
Joe: Wow. Sophie, we touched on fear but there are so many conflicting emotions that we must untangle when you get cancer. What advice do you have on that front? Where do you start?
Sophie: Wow. I think this is the main reason why I wrote the Cancer Whisperer, Joe, is because it’s such an important thing. There are a lot of books on the market. Cancer books are an industry now. I read a lot of them, but I couldn’t find one that really helped people navigate the emotional psychological part. It is very conflicting because I remember in my case, there was fear, obviously. They didn’t think I’d make it six months. That was a very terrifying thing for a mother of a four-year-old. There’s also anger and regret. I was riddled with regret about all the things I hadn’t don’t in my life that I wished I’d done.
All the things I had done that I wished I hadn’t done. I was stunned by the decks of regret that I have faced. With it, grief, just enormous grief. I can say more about that, but you have denial, you have fear, you have anger, you have regret, you have grief. It’s like a cauldron inside you. I hope my book provides some tools to help people with that, and a book is a book, there’s a limit. I think it’s really important to reach out to centres like Maggie’s and Penny Bron, or even counsellors to sit down and say, “I’m scared. I’m angry. I’m grief-stricken” and get help with it. It’s more than I can unravel in a short interview, but it’s doable.
You don’t need years of therapy. There are really practical tools. I highly recommend, actually internationally, the more to life program, which is moretolife.org. It’s an educational charity where I learnt everything I’ve really learnt about how to deal with this stuff. You need to be fairly physically well to do their courses. If you can’t do that, then there are places like Maggie’s and Penny Bron. You need to reach out and face into it and many people numb out and try to be positive on top of it, but it comes back to bite you in the arse later.
Joe: Yes, absolutely, Sophie. Also, like you said, your daughter was four when you were diagnosed. That’s a really tough thing to do, to explain it all. How did you go about doing that?
Sophie: It was a really tricky – well, we were very clear about doing it, because my husband lost his father when he was six years old, and nobody told he what was going on. Nobody told him how ill his father was, and suddenly, he was in hospital and then he was gone. He wasn’t taken to the funeral, he didn’t get to say goodbye. It was another era. It had really a very long-lasting effect on him, to not know through his childhood what really happened. We were very clear that we were going to tell her.
Also, there was a good chance that I would die before she was five years old. How do you tell a four-year-old? We told her I had cancer. We told her I might die, that she might not have a mummy anymore. we kept it as simple as we could. I wanted her to not be blindsided. I wanted her to be as ready as she could be at that age. We needed to talk about what does death mean? That mummy wouldn’t be here anymore. That I’d be in the clouds and in the trees and I’d always look over her. It was heart-wrenching, Joe.
It was heart-wrenching. I remember her, when she was a bit older, just raging at god, and saying, “I want my mummy here. Please don’t take her to heaven. Please leave her here.” It’s been tough on her, but we’ve included her. We don’t over-dramatize. I’m very well right now, there’s nothing to fuss about. I had multiple tumours three times, I nearly died, I would say, last year. We didn’t think I’d make Christmas. We keep needing to revisit it. She’s older now. It’s harder now in a way than when she was four because she lost her grandfather two months ago, she knows what death is now. In a way, it’s harder as she gets older. We’ve included her, and I think that has made it much easier for her. The thing about kids is, they pick up everything.
If you don’t tell them what’s going on, they make it up in their own heads. There’s a lot of research that shows that they think they’ve done something wrong. They’re picking things up and they think, “I’ve done something wrong. Something’s my fault.” They turn it on themselves. That’s why I think it’s really important to be truthful with our children, however devastating the truth is.
Joe: Yes, Sophie, I can so relate to that because my son, who was around three when I was diagnosed, I really felt that when we made Michael a part of it all, when he had his own toys with me at the hospital, when we made a doctor’s kit for him.
Sophie: Brilliant. I love that.
Joe: He had his own lanyard with a picture.
Joe: We did all of that. Then we had this third birthday here in the oncology ward. We had three oncology nurses sing happy birthday. That was a moment when it all became normal. It all became a part of life. I think he stopped freaking out because he realised that all of a sudden, he’s included in all of this. We didn’t really know how to handle it, but now he’s included, it kind of made it all normal.
Sophie: That is such a beautiful example of it. Honestly, it brings tears to my eyes. It becomes normal. It becomes normal when you do it that way. It’s just part of their day. Mommy’s gone for a treatment, mommy’s in hospital, so what? It’s like a known thing after a while. Gabriella has grown up with it for four years now, nearly four years. It’s just part of her world.
Joe: Absolutely, Sophie. Yes, you have the compass, your fantastic system for dealing with cancer. Can you talk about what that is? How did you come up with it? How does it work?
Sophie: In my book, there’s a chapter on each step of the compass. It includes things like, pointing north is coming to terms. That’s about coming to terms with what you’re dealing with, facing into it, getting through the fear and the denial. There’s a chapter about understanding your disease and becoming an expert in your own disease. I think that’s one of the reasons I’m still here, is I’m an expert in my own disease now. I know it as well as my doctors know it, sometimes I know it better. I’ve had moments with doctors when I’ve known what to do and they haven’t known what to do. There’s something about stabilizing your body. There’s a chapter about grief. There’s a chapter about clearing all the mind talk in your head.
I wanted to just create, because it’s the place on the map where the map runs out, so I wanted to create a compass for people at the point on the map where the map runs out. Where do I go? How do I go? A compass that guides them to attend to their mind, heart, and spirit, as well as their body. We focus on the body, the body, the body, the body, but where is the guidance? We’re integrated beings. Our disease is all connected, physical disease is connected to emotional dis-ease. Disease. Disease means dis-ease. We need to get that. Disease means dis-ease.
We need to be attending to – in order to live, we may not even make it, Joe. I may not make it. I may not make it. I’ve made it longer than anyone. I can go to my death bed knowing that I have healed parts of my being that needed healing. I have moved into what I call my purpose in life. I have more connection, more authentic friendships, a clearer sense of purpose, even of destiny, than I ever had before cancer. That doesn’t mean I will beat cancer, which is a phrase I hate. It doesn’t mean I’m going to overcome this thing or make it. I don’t know how long I’m going to have.
Let us have all that we can have while we can have it. Let us live as fully as we can live. Cancer is a massive wake-up call to say, will you claim your life? Will you claim your life? What is it you want to life that you haven’t lived? Who is it you want to be that you haven’t let yourself be? That is the gift. That is the gift of cancer. That is why I’m profoundly grateful that I’ve had this experience. I would give it back tomorrow in order to raise my child into adulthood, but in some ways, it’s been the making of me as a human being.
I’m making a bigger difference than I have before. I’ve done this work for a long time. One of the chapters in my book is called: Knowing your purpose. The compass is a guide to not just attending to your body and your fear, but to engage with your life in a new way.
Joe: That is very profound, Sophie. I guess that’s the theme for me, reading through your book, that of transformation, that of transforming and feeling the gratitude and bitterness and hope and darken to light. Does this reflect how you feel about cancer? This whole transformation theme?
Sophie: I think it’s been very transformational. Those shifts have certainly occurred. Fear into gratitude and bitterness into hope, that has certainly occurred. Massively. It’s not that simplistic, because I move between fear and gratitude regularly. I didn’t move from fear to gratitude and now I’m in gratitude every day. No, I’m a human being, I haven’t transcended fear, I have confronted it and I continue to do so whenever it raises its ugly lying head. I confront it again and again and again and again and again and I move myself back to gratitude. It’s an ongoing practice.
I don’t think we move from one to the other and that’s it. I think it takes work and commitment. I lose my hope and I have very dark days. I have days of despair and days of hopelessness, and when I don’t know how I’m going to take the next step. I know what to do with those things and I know how to move myself out of that state and then back into gratitude. I’m not really keen on the dark to the light thing story, because it’s like the bad to the good, because it’s too this or that. You know, dark or light. I have dark days, I have light days. On this journey, I have found light inside the darkness.
Not beyond the darkness. Like, dark and then light. There’s light right inside the darkness. It’s the most dazzling light of all because it surprises you. On my darkest days, I have found wonder and awe and grace that I could not have predicted or imagined. I’m not afraid of the dark anymore, because I know there’s light in the darkness. There literally is, if you go out on a dark night and your eyes adjust, you’ll see the light inside the black. That’s what I hope people living with this can find a way to find. I’m not a false-positive person. I don’t like positivity. I think it’s like putting icing on dog-shit and calling it a cake. I’m about authenticity. That means if my time is up, facing that my time is up, and saying, yes to death, as well as saying yes to life.
Finding the grace and the beauty in dying as well as living. That’s what I’m really passionate about. I think I’ve helped some cancer patients die peacefully. I’m probably prouder of that than of anything I’ve contributed to them staying alive. Yes, there’s light in the darkness, Joe. There’s also, we can rest in peace before we die.
Joe: That’s very powerful, Sophie. You have a very distinct take on grief. Could you talk about that?
Sophie: Yes. I used to think grief was something you needed to get through when there was a devasting loss in your life and something that brought closure. I bought into all of those – what I think now – are myths about grief. Grief is often thrown in with fear and anger. There are different types of emotions, Joe, there are separating emotions that separate us from who we are and our connection with others and our connection with life itself, fear, anger, resentment, envy, jealously, bitterness. Then there are feelings that connect us with ourselves, others, and with life, like love, joy, excitement, happiness.
They’re very connecting emotions. Well, so is grief. Grief opens the heart. It doesn’t close the heart, like fear does, it opens the heart. It’s an incredibly healing force. It hit me much harder than my fear, I was overwhelmed with grief when I was diagnosed. It’s become my friend. I have waves of it every so often. I don’t get through grief. I’ve taken it by the hand. It walks with me every day. It reminds me of everything that’s precious to me and everything I love. It keeps me connected to life. I think it’s the other face of love.
I think it’s another name for love, even, because we grieve that of which we love. I’ve become a very big fan of grief and I actually would like to do more work to help redefine our understanding of grief in this culture. That it’s not a heavy burdensome. Of course, there’s all of that, but I think it’s one of the most healing forces we can embrace in life.
Joe: Yes, that’s really powerful, Sophie, because, yes, for me, I think I’ve been stuck in the old paradigm of where grief is something you need to get over, like a speed hump, you know? That’s not really how it works.
Sophie: Yes, exactly. It’s not how it works. My father died two months ago, of lung cancer, as it happens, we were a right pair. I have waves of grief. It’s still very fresh for me and raw. I had the privilege to be there when he died and to help him find a little peace before he left. He so didn’t want to leave. I don’t want my grief about my dad to – I don’t want to get over it. I want to hold it in my heart for as long as I walk this earth, because I hold him in my heart with it. It keeps me connected with him. It doesn’t have to be heavy every day. I’ve had grief that’s brought me to my knees.
I don’t want to get over it. I’m happy and content to have it live in my heart and him with it, because it keeps me connected to my dad and my loss of my dad, and my desire to remember him and honour him and speak to him at night with my daughter, which she likes to do. Can we talk to Papa? She says. Grief helps us to do that. Yes, it’s a companion I welcome.
Joe: Yes, I’m sorry to hear about your dad, Sophie. I feel like you say, the connection is still there.
Sophie: He had what we call: A good innings. She had a good innings.
Joe: Sophie, in your book, you talk about the importance of dealing with moments when life shocks you with an event that you weren’t expecting. Why is that important and how does it work?
Sophie: Okay, this is an important question because we often, in psychology and in the mind/body/spirit world, we talk about life challenges and life events and trigger events. Those things are important. Cancer is a life challenge, or a life event, but hearing the words, “You have 27 brain tumours.” Is a life shock. It’s a very specific moment in time. I’ve been teaching about life shocks for 37 years. I was taught about them from some genius of the 20th century called: Brad Brown. That’s another story.
When you focus on these moments in time. When you engage with these very precise specific moments that hit you the hardest, they’re the ones that hit you the hardest: Mrs. Savage, you have 27 brain tumours. For example. You connect with that moment in time. First, when you go back to that moment, all the feelings and all the thoughts are stored, like a file, in the memory of that moment. Just by reexperiencing a life shock, you open up the psyche, you open up the feelings. You open up all the beliefs that’s running. You can bring it into the clear light of day and deal with it. It’s an amazing thing to engage with those moments.
It’s also, god, I could talk for an hour on this, I’ll try to bottom-line it. Have you ever wondered if life is trying to tell you something? Have you ever noticed patterns? Why is this happening again? Why am I in this kind of relationship again? What’s going on? Life is trying to tell you something. It really is trying to tell you something. It’s saying, wake up, you are not what you fear you are, you are not what you think, you are not what you believe. Life is not what you think, what you believe, wake up. Wake up.
It’s knocking on the door, every single day, trying to get our attention. Hello? Hello? A life shock is a collision point between how I perceive the world and how the world really is. We have dozens a day. It’s every unexpected, unwanted moment that happens. Every one of them is an opportunity for awakening a transformation. That is the subject of my next book, actually, because it’s such a big subject, I’ve written a book about it.
Joe: Fantastic, let’s talk about your next book. Tell us more about that.
Sophie: Well, it’s called: Life Shocks and How to Love Them. It’s out in June the 14th. I would say it’s the philosophy behind the Cancer Whisperer. When I became a cancer whisperer, the way I met that disease was because I had spent 20 years of my life learning and teaching people how to engage with life shocks and how to meet them as opportunities for profound transformation. This book is really what’s behind the Cancer Whisperer. It does continue my cancer story. My cancer story continues within the book and all that I’m continuing to learn from my cancer life shocks, because cancer gives me many life shocks.
It’s about more than that. It’s not just about illness, it’s about life, and how to be fully alive. There are chapters about things like beauty, success, power, and life shocks in these arenas and how we can learn from them, how we can engage with them. There are some very practical tools in it for how to do that.
Joe: That’s fantastic, Sophie. I really look forward to it. If someone wanted to learn more about you, and about your books, what would they do?
Sophie: Firstly, go to Sophiesavage.com. I’m also on Facebook. I have a group called: The Cancer Whisperers. I’m Sophie Savage, the cancer whisperer. I have a page. Most of it, you can find on Sophiesavage.com. They can also go to: Moretolife.org, which is the program in which I teach about life shocks. There are courses about the kind of work that I do, if anyone really wants to do some much deeper and sustainably life-changing work. I highly recommend that. I’m a trainer in that program. It’s an educational charity. Sophiesavage.com is really the place to start.
Joe: Cool. Fantastic. Thank you so much, Sophie. It has been incredibly profound.
Sophie: Thank you. My pleasure. Thank you so much.