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.
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.
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 eight 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 eight 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!
Thanks for this post Chris. I always say we have to rule the fear or it will rule us. Everyone handles it differently. Somewhere along the way I managed to keep it at bay but have no idea how! I’m just thankful while it lasts. xx
Hi Deb, you’re so right that everyone handles it differently! I agree with you that we can be dominated by fear if we are not careful. For me, I have tried to focus on my work, so that I have less time to think about my personal situation.
It has taken many years and several sessions with professionals to put it in it’s place and now I feel fine. I also have been lucky that I have unexpected years to enjoy, and do things I never thought I could.
Like you Deb, grateful! xxx
Great post Chris!
Fear is part of our lives it seems, with or without cancer. I talked to one young healthy person who’s afraid to take Bart (Bay Area Rapid Transit in San Francisco) due to fear of terrorists! Fear is sadly an integral part of modern society, whether it’s justified or not.
Cancer fear, though, is personal and immediate . It’s about your own life and mortality. The only remedy I’ve found is to be profoundly present. At this moment, here, now, it is alright. Meditation (transcendental in my case) helps me discipline my mind to be still. And in that stillness is endless perpetual peace.
I still fall prey to fear over the next blood test. But at least I can question my fear and try to work through it because I know there is deep peace beyond the fear.
Thx Pat! I see the fear you talk about constantly in London too, where the conversation of terrorism is a constant. As we all know most of it is not really justified, but just a natural reaction.
As both of us have similar experiences we have encountered many different emotions, and you have talked frequently of the benefits of meditation which I know many of my friends also benefit from. I too have now learned to focus in the present and enjoy each moment for what it is.
I have had so many conversations about the worst scenario, that as time has gone on it has gone further back in my mind. Now I barely consider it, even with my continued testing. I now expect the positive results every time 🙂
So pleased that you can find the deep peace, I think I am getting to that point now. Thx so much as always Pat for sharing your invaluable experiences, xx
I dont fear cancer any more but my fear now is feeling vulnerable since the side effects of cancer treatment have left me paralysed. I still have not been out in my wheelchair alone even though perfectly cabable. I feel afraid that people could snatch my bag or push me over or that I could fall out if my wheelchair and not get back in, i am unable to run away if I need to nor can I defend myself… This is all a bit extreme and hard for peole to understand but I fear being vulnerable .. I am working on it and I know I can conquer this fear given time so that I can regain my indeoendence… I guess you could say that fear is paralysing the rest if me not just my legs… The quote you gave is very good and so true … Thanks Chris ..,
Helen, your point is so valid! As you are so well aware, we all lose so much to cancer, but I know very few who have lost as much as you physically. I totally understand the thought of feeling vulnerable as I have lost all my muscle mass and no longer have any man power and look like a twig. Getting older has also given it’s own challenges but at least I can still get around on my own.
I think the work you are doing to connect others with similar issues is brilliant Helen and will be a positive focus for you. I hope that in time your feeling of fear will be less and enable you to regain some form of independence.
Thx as always for sharing your incredibly personal thoughts and experiences for the benefit of others, Chris
Thanks Chris .. I started a closed FB page for those with Radiation Induced Lumbar Plexopathy and their carers … We have 16 people already when I expected 2 or 3 … It is amazing to share with others but I am pleased to say they are all still walking even if with difficulty… So if you come across anyone in your travels with RILP please send them in my direction .. Yes the work we do is very important to our own well being too… In some strange way it gives me meaning to what has happened and I am sure you can relate to that… It gives me a purpose in life … Have a good week and keep up the goid work over there in England..
I am delighted that you have started that group Helen, because as you know sharing is so important from all sides. As your issues are quite rare it must be great for you all to be in touch!
Yes I do feel the same as you regarding my work. It is a wonderful feeling to be able to bring some positivity to others from our negative experiences.
Thank you and best to all in Aus 🙂