This week’s post is prompted by two very different communications I have had recently. The first was with a friend of mine in America, ( Rick Boulay) who is an oncologist and sent me a copy of a recent presentation he did, talking about how the emotion of fear can in fact inhibit our recovery. This is something I have always been aware of, but when I listened to the presentation there was such clear medical evidence as to why this is so, and it felt very credible coming from a senior clinician in this way. But secondly and probably more impactful, I met a man who had been diagnosed with prostate cancer, had surgery and been given the ‘all clear,’ but psychologically felt unable to resume his life. He had taken to drinking and did not feel able to return to work and was slipping into a downward spiral.
It seems that whenever the word cancer is mentioned it triggers so much negative stuff, and three of the most popular words used are misery, tragedy and death. Is it any wonder that we are scared of what may lie in front of us or our loved ones, when we hear these words? But fear itself can be so destructive, and can actually inhibit our possible recovery. Even if we are aware of these facts how do we stop that emotion impacting on our health? It feels like a double whammy, not only getting diagnosed with cancer but then suffering with the emotional side and the effects of fear.
My work involves raising awareness and improving support around the psychological and emotional issues of cancer. In my personal experience many of us may suffer more mentally than we do physically, as the emotional scars can take longer to heal than any physical ones. Not just the people who are directly affected by cancer but loved ones friends and relatives also. During my seven years as a patient, I have seen many people at various stages of their journey, but rarely can I say that cancer has not changed them. Most, including myself are very different people now, many living from blood test to blood test or appointment to appointment.
Some of us are lucky to have got to remission, but that of course is far from the end of the story. The ‘fear’ we have developed will never leave us, and in many cases keep eating away at us, doing more longer term damage than the disease itself. I wondered if it was possible to be a Cancer Phobic (Carcinophobia) and apparently it is! These days we talk so much about cancer and it’s effects that I wonder if we are creating an extra element of fear for many?
When I was diagnosed I was immediately gripped by fear, not just about my disease, but about my work and life. I had been told the worst scenario, but what frightened me most was entering a new stage of my life where I was no longer in control, and waiting to see what nature decided was my fate, knowing that there was very little I could do to influence the outcome. I have spent the last seven years living that way, and although I am used to it, it most definitely has not become easier.
Living with constant uncertainty is very unsettling, and when you are used to having regular setbacks it becomes difficult to exist without an element of fear in your life. But reality tells us that much of what we imagine will never actually occur, and in many cases things will never be as bad as we think they might. But how do you control such a destructive emotion? Possibly one of the most famous quotes of all time about fear is this one from Franklin D Roosevelt, which describes things quite nicely! “The only thing we have to fear is fear it’self – nameless, unreasoning, unjustified, terror which paralyzes needed efforts to convert retreat into advance.”
That quote tells us how the emotion of fear stops us from doing what we really need to protect ourselves, and this can certainly be the case in the cancer world. It becomes very difficult not to focus on what MAY happen and concentrate on what actually is happening! These days many more cancers are treatable and in a lot of cases curable, and there are certainly more people surviving cancer than there were, so there should be an opportunity for optimism, but I don’t imagine when facing a cancer diagnosis too many people would be feeling optimistic.
Since my own journey started I am no longer frightened of cancer and it’s associated treatments, because I have had almost every treatment known to man, and days that I thought I would never wake up, yet amazingly I am still here! I have faced up to my own mortality which it was felt would have been a few years ago now. Cancer has empowered me in many ways, and removed so much fear from my life. But it has also taken most of the things that I previously enjoyed, which I guess is the trade off we seem to always have. My concern is how I will cope in survivorship, without much of what I had previously taken for granted, that my body can no longer provide. So far I am getting by, but my choices are few, and much of what happens is now out of my hands.
Can we control our emotions, very rarely I suggest, and fear is one that seems to affect us all differently. Some show physical signs of stress and others don’t, but what we do know is that our health will suffer because of it. If you add to the fact that you are dealing with cancer and all associated with it you can understand how unhelpful this emotion can be. I think it will be many years yet before we will feel anything positive once the word cancer is mentioned!
Where and how has fear entered into your life? Do you believe you are not affected by it? What are you frightened of most? As always please feel free to add your voice to this and share your experiences with the readers, as we all continue to learn from each other!
The entire situation of getting a cancer diagnosis is laden with fear. Fear of treatment; fear of side effects; fear of failure. Then there are the fears you don’t know about yet: fear of after effects; fear of loss of control over your life; fear of being isolated; fear of future treatments; financial fear.
You cannot live in a state of fear. It will kill you.
I am convinced (and science is backing this up) that our thoughts and emotions drive many aspects of our lives, including our health. In the cancer community people talk about meditation to manage stress and at times it all seems a bit nebulous. But meditation–whether it takes the form of art, dance sports or sitting quietly–allows you to find that timeless place of peace and oneness. The trick is to learn to carry that with you wherever you go.
Learning to separate “the monkey mind”, that racing flow of fearful thoughts from the reality at hand has been incredibly liberating. Learning to observe one’s mind is far more fascinating than the 700 vapid channels on tv.
I love the book title “Wherever you go, there you are.” by Jon Kabat Zinn. Very zen, so true. And then there is the infamous, “A journey of a thousand miles starts with a single step.” Two wise quotes to ponder when it comes to the path you choose/are given and how you will manage the thoughts that arise.
Thanks for sharing your knowledge and experience. you certainly cannot live in a state of fear and I also have heard much about the benefits of meditation, but have never tried it.
I have found only one place where I am totally free and that is when I go to football. My focus is entirely on the game and there is no room for anything else!
In many respects I have become liberated because of my diagnosis but I hate living with the constant uncertainty that it has brought me. My thanks to you and the rest of the community for the support that you share, and I will certainly take a look at the books you recommend. Chris
Chris your blog reminded me of the day I was diagnosed with breast cancer! The vice gripping fear overwhelmed me. I had learnt to live with the anxiety of my brain tumour re growing but the Breast cancer took me to a new dimension of gut wrenching fear! But I have come through it. So far! My coping strategy is that I have embedded Mindfulness into my life, living as much as I can in the moment and enjoying the richness of anything positive. A blue sky. Shuffling through Leaves which have fallen from trees. Joining a choir and singing my heart out!!!. Through My Breast Cancer journey I have learnt about simple mediation and how it can calm my mind. I recently read Ruby Wax Its a Sane World, Taming my Mind. It is a fabulous book well worth a read in understanding how to help yourself. It is based on Ruby’s experience of depression but is far reaching in its impact…well I think so anyway.
I am fearful of the Cancer and brain tumour regrowing but recognise (with Ruby’s help!) that I often spent time engaging with my negative thoughts and making up stories’ in my mind which may never happen. I am working hard not to do that anymore! And feel so much better for it!
As always Chris a fabulous Blog.
Hi Dawn, you do indeed seem to have come through it so far. Knowing you as I do I think you have dealt admirably with the obstacles that have come your way, and I have heard many people mentioning the meditation thing, which I have never tried, so may indeed give it a go. I may also have to give Ruby’s
I love how we now embrace the simple things in life, which certainly in my case I always took for granted. Personally I have lost my fear of cancer, but I am not comfortable in the ‘unknown’ situation in which I currently find myself.
Well done to you Dawn and thanks as always for sharing your incredible experience. It is really great to be able to share, and learn from each other! xx
Another great blog Chris, and subject I feel very moved by. Fear has played a massive role in my journey. There are parts of my treatment in particular the chemo and needle and attending hospital appointments that I ‘fear’ will always be a battle ground for me. I have worked hard to over come these fears and indeed time has helped but like you say these emotions are part of that experience… weather we like it or not.
CBT has helped me with my anxieties and fears, as has counselling and alternative therapies such as reflexology. Thankfully however looking back now I can see that I am not so frightened and life is better, if not enormously different! I am living as much as possible in the here and now and fear in this place does not survive. I am able to challenge its relevance and question its control over me. I believe strongly that we have been given the awareness of ‘choice’ through cancer. The choice to choose how we live and whats important to us. When things aren’t comfortable sometimes that indicates change. At other times it is another opportunity to reflect and create new healthier ways to respond rather than react.
Thanks Chris for sharing and for giving us all the opportunity to reflect and appreciate our growth.
Wishing you a great week.
Hi Tricia. I see frequently the issues you talk about, and there is such a great fear surrounding hospital visits for people affected by cancer. I have been going continuously now for 7 years, and the longest I have gone is a month without a visit in all of that time. It has become part of my routine now, but as you say it certainly doesn’t make things any better.
You make a great point about choice Tricia. I guess we have always had that but cancer has encouraged us to make more. So many people also mention CBT and various other therapies which really do seem to help, as Dawn above also mentions.
Thanks so much for sharing your experiences too Tricia, which are so valuable for others, and I’m glad that my writing helps people reflect on things in their own lives. I am also learning so much from others too, so that certainly is a win-win 🙂
Enjoy the rest of your week too, Chris
Very thought provoking as usual, Chris. The fear can overwhelm me at times, especially when I look at my young children and my husband and wonder how on earth they’ll cope without me. Meditation helps. It allows me to acknowledge the fear and let it pass. Then I can feel the other emotions that can get hidden. Optimism that one day I will feel better again or that I will beat the odds and be the one in five to get past the five year mark. Joy that the sun is shining and the world is beautiful. Relief that in all likelihood I won’t end up in a nursing home in a pool of my own wee. Honesty that really and truly there are worse fates – to be a mother in Syria or a child in Liberia; to be affected by severe mental illness or motor neurone disease. Did I live a life free from fear before cancer? No. Now the fear has a name and a form and in some ways that makes it easier to live with
I just wanted to say how inspired and encouraged I am by everyone’s comments….just goes to show how far we have traveled, and how ‘gratitude’ for the here and now is a value and strength that we have all live with.
Fear it seems the experience of cancer has allowed us the opportunity to embrace life in a variety of positive ways.
I hope that your day is beautiful!
I couldn’t have put it better myself Tricia! It is true we have all come a long way, but isn’t the journey better when you have company? 🙂 It really is so good to be able to share things with people who truly understand.
Thx so much for your comments. Meditation seems to be a common theme from this week, and it seems to have been a great help for many. I know so well that feeling of optimism you describe, which as you rightly say can get hidden. Personally I have always had that, and always believed that someone had to beat the odds. I feel it is what has got me this far.
You also make a great point, that we have always lived with fear, and it is certainly more focussed once cancer enters your life. The comments you make certainly help to put things into perspective, and I found them very moving. Thank you for sharing, so that we can all learn more, Chris
Helpful blog and comments. I think one of the things that fear does is isolates – even withing very close relationships. Fearful thoughts can be loud and dominating as well as quite sneaky leaving you unsure of what exactly is going on. The thoughts i had at the beginning of the journey were difficult almost impossible to articulate and i think i sort of shut down – was speechless. What i could do was walk 0n silence and sometimes that seemed to shift things. I also found that i just splurted things out in spite of the fear and inability to string sensible sentences together!
I found fearful thoughts oppressive as well as exhausting. After surgery i felt very driven to get back to some sort of normality – whatever that was. I think i spent a lot of time trying to re-locate myself -impossible. The cancer diagnosis had changed my view point as well as my stamina levels dramatically – though i think i was so much in shock that i couldn’t see that. Looking back i think i just went in to over-drive. Busyness to avoid fear / the reality of the significance of the event.
I meditated pre-diagnosis it does help to calm the mind even in the face of fearful and challenging matters. Post diagnosis it helped too. I mediate and knit/ crochet/make – it is the rhythm that helps. I can appreciate how being in the football zone would be helpful – there is a strong link between mind and body – hence there are those that do walking meditation and meditate and swim.
Living with uncertainty is a big part of the equation i think. I am learning to stop trying to ‘fix it’ whatever the ‘it’ is at any given point. Being in the moment is not always a great experience but is just that – a transient moment.
Hope you have some sunshine where you are today – the winter light in Northumberland is stunning today.
I can certainly empathise with much that you describe above. The changing point of view and stamina levels I recognise only too well! It seems you also have had a positive response to meditation which is fantastic, I am more convinced of it’s benefits by the day.
It is interesting you talk about living with uncertainty as it is the very next topic I have written about.
I have just returned from a pre Christmas party with friends, and found it difficult to jump around celebrating. Yet another side effect of the situation I find myself in, but I am home now where I am happiest, and it is a lovely day!
Thanks so much for sharing your experience Kay, and look forward to welcoming you back to the site, Chris