Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about feelings of guilt and selfishness.
by Chris Lewis, Living with Cancer
I know, no one likes to consider themselves as selfish, especially me! But my encounter with cancer has made me wonder. Other people are always my concern, and the joy I receive in my life has always come from doing things for others. However, when cancer struck, my world turned on its head. Instead of being a part of my family focus, I became the entire focus. Everywhere I went, people wanted to know what was happening to me.
Of course, I spent a long time in hospital, with chemotherapy, transplant and various complications, and I was the focus there too. Due to the complexities of my disease and treatment I required a lot of time and care from people. I was a very good giver, but a poor receiver of attention. Coming from a management background, I decided to see my illness as another project. When I was at work I could fully focus on things, so I said to my wife when I went into my isolation unit for my stem cell transplant, that I was going to clear my head of all distractions, and focus on getting better.
In isolation I could focus, I knew I had to deal with the bad stuff, but I found that easier on my own. Obviously I had no outside life distractions as my wife was taking care of all that. Unfortunately my ‘project’ has lasted a lot longer than was hoped – a year has turned into seven. What started out as abnormal for me has become normal, as my treatment continues. Unfortunately my health is still at the centre of everything in my life. The frequency of my treatment in recent years has changed our lives considerably. Seven years of continual treatment has taken its toll on me, both physically and emotionally.
Externally I am still the same person that everyone knows, with a few more battle scarred features, but internally I’ve changed. I have become emotionally exhausted. Even the simplest things in life are beginning to feel like climbing a mountain. What used to be a pleasure is now becoming a chore, and I am finding that I no longer have time for people who are not entirely straight forward: saying one thing but meaning something different. It seems this is much more widespread than I ever thought!
Of course, not only do these changes affect me, but also my loved ones and friends. For so long now I have had to gear everything around my treatment and how I am feeling, it has become my new way of life. Most arrangements will have to be checked around me and what I am able to do or not; everything has to be fitted in around my treatment regime. This wasn’t how life was before cancer. I was the happy-go-lucky guy, who would be partying, travelling and meeting new people as often as I could.
If my health is not good, nothing else matters of course, so I really have to concentrate on that side of things. But I can’t help feeling that is selfish. Everyone else still has to run a major part of their life around me. I can feel myself slowly slipping from people’s social radar, something I don’t feel too upset about currently, but it’s not great for my wife who loves socialising. There are times when I just don’t feel up to it, which of course is understood by everyone, and we have learned to make adjustments. But I can’t help feeling like a ‘wet blanket,’ when it comes to socialising.
It is very difficult to see life through anyone else’s eyes other than your own, but I can see that such an extreme change of character might make life difficult. No one says that and everyone is so polite, helping me feel comfortable in my new life, but I still feel very uncomfortable about things. A lot of people in my life are making sacrifices and adjustments for me, but they have lives too and deserve to live the lives they want.
By this stage in our lives, my wife and I had planned to travel and catch up with parts of the world we haven’t seen. Now a long weekend in Devon, looks like a major treat! We have accepted that this is how things are, but that doesn’t make me feel better about it. I can no longer drink alcohol much, can’t taste or smell, and am not allowed to sit in the sun. Not exactly the perfect holiday companion! Any break away, has to be organised around me. If I’m honest, it is why I prefer to stay at home, where I am most comfortable. Is that selfish?
After seven years, we have managed to find a compromise, where my wife goes out often with her friends, and I am at home writing or out at hospital, but it is not how we envisioned our life. We are grateful to still have the time, and that I am still alive, but I can’t help feeling selfish. Yes, I have lost a lot, both physically and mentally, but so has Mrs L. She handles that situation much better than I could if roles were reversed.
Along my own personal journey, I have lost many friends to this awful disease. I have to admit to thinking frequently, when I am moaning about my life, that they no longer have theirs, and again question if I am being selfish. It certainly feels like that at times!
How do you feel about your life after diagnosis? Have you accepted things? Do you feel selfish or guilty like me? I ‘d love to hear your experience.
Pre 2007 I had spent my life travelling the world as a self-employed Business Consultant, specialising in the ladies fashion business. But at the age of 51, I was diagnosed with Mantle Cell Lymphoma stage IV, a rare incurable blood cancer. I needed aggressive chemotherapy and a stem cell transplant to keep me alive. This was successful but unfortunately since then I have suffered with continual rejection issues from the transplant.
My constant unreliable health meant I was unable to continue working, and my own experience showed me how little support was available for people affected by cancer when they leave hospital. I decided to try and improve that situation, so started talking at health conferences, and to extend my reach I took to the Internet and created a blog. (www.chris-cancercommunity.com)
In between my own treatment I now write and speak about cancer internationally, and through my social media channels, am in contact with both patients and clinicians to help raise awareness of cancer issues. You can also find me on Facebook (https://www.facebook.com/chriscancersupport) and Twitter @christheeagle1
My heart aches when I read your article. This is grief: raw and painful. And worse, your grief was prolonged by the hopes that the treatment side effects would resolve and you’d have your energized life back again. Thank you for writing about your truth.
There is a second layer of suffering here – born of your love for your family and friends. The energy of your compassion, the deep-seated feeling of wanting everyone to be happy, for them to be able to follow their passions without consideration of your needs, has been changed into a kind of core belief. It might read “Life should not be this way for them” or “It’s not fair that they should have to consider my needs first.” These beliefs result in a feeling of guilt, and this further spawns the idea that you are being selfish.
Please allow me to share my experience as an oncologist, without judgment. The issue of feeling selfish is common among people affected by cancer, and there is much learning for everyone here.
Firstly, we all have a limited amount of energy each day. If we push ourselves beyond our capacity one day we’ll pay for it the next. So we need to be very conscious of how we’re going to spend our precious life energy. Comparing what we could do in the past with what we can do now is not helpful – instead we can focus on what we can do within our new limits. We can ask ourselves, “How can I express my spirit and love with what I have right now?” A hospital Chaplain once told me, “Imagine someone lying in a hospital bed thinking, ‘I’m going to love the next person who walks in the door’. The next person to appear is the ward custodian……” The point is we always have an opportunity to live fully within our circumstances.
Secondly, I don’t think we should feel guilty about taking care of ourselves. The justification for self-care is that ultimately we’ll have more energy and be in a better place psychologically for the aspects of our lives that are most important. When we take care of ourselves we become better partners, parents, kids and friends. When we’re in this positive space we can really listen to, support, and cherish our loved ones. These deeper moments of connection leave a lasting impression on their hearts. Let’s choose quality over quantity in relationships.
Last is the issue of trying to protect our loved ones from the pains of life. Of course it hurts them to see us suffer; they love us and want us to be happy and well. Mourning acknowledges the pain, especially the pain at diagnosis or at other times of hearing bad news. Mourning has a natural course and often dissipates with time –though on its own schedule. We prolong the pain and suffering when we don’t accept the truth of the situation. The truth is our loved ones are hurting and they are going through their mourning process – but it’s their mourning, not ours. I’d argue it is also their responsibility to do the work of mourning – to feel it, to come to terms with it, to find meaning, and to make the best of a difficult situation. I’ve heard people say that their own cancer diagnosis has made their teenage or young adult kids stronger, more loving people. I suggest let go of the guilt of a situation you can’t control, and have faith that your loved ones have the inner resilience to grow through their grief. (And love them no matter how they respond to the situation – they’re doing their best!)
Are you being selfish? It’s hard to say, but I don’t hear selfishness in your writing. Your focus is on your loved ones, and you continue to support all sorts of people affected by cancer through your writing and blog.
Thank you so much for facilitating this important conversation. Bless you and your family.
With much admiration,
Dr. Rob Rutledge is a Radiation Oncologist in Halifax, Nova Scotia, specializing in breast, prostate and pediatric cancers. He is also an Associate Professor in the Faculty of Medicine at Dalhousie University.
In 1999, Rob co-created the ‘Skills for Healing’ Cancer Weekend Retreats. These weekend support groups teach a powerful and integrated approach to the cancer diagnosis and ways to heal at levels of body, mind and spirit. To date, more than 1,600 people have attended the retreats in over 20 cities across Canada and abroad.
Rob also leads the Healing and Cancer Foundation, a Registered Charity, that freely offers educational videos, documentaries, and webcasting seminars – and he is co-author of a book called The Healing Circle, which captures the teachings and inspirational stories from the weekend retreats.
In 2010, Rob received Cancer Care Nova Scotia’s Award for Excellence in Patient Care and, in 2006 Doctors Nova Scotia presented him with the Health Promotion Award in recognition of his contribution to physician health and health promotion in cancer patients.