When I was checking through the statistics of my blog recently, the most searched for post was this one which I wrote over a year ago. It was something that I felt had happened to me, and it seems like many people may feel the same! As the complexities in my own case increase, I still find it difficult to rid myself of this emotion.
“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 it’s head. Instead of me being a part of my family focus, I became the entire focus. Every where I went, people wanted to know about 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. But 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 stuff. Unfortunately my ‘project,’ has lasted a lot longer than was hoped. A year has turned into seven now. What was 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 it’s 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 is where the change is. I have become emotionally exhausted. Even the most simple 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. 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. I was the happy go lucky guy, who would be partying and travelling as much as I could. Meeting new people and laughing at their constant attempts to impress.
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 of course, 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 it is their life too, and also deserve to live the life they want.
By this stage in our lives, my wife and I had planned to go travelling, 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 things. 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. But isn’t 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 envisaged leading 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 must 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, 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.
Dear Chris, thank you for this honest post.
If you aren’t Chris, and have a minute or two, you might find this interesting and illuminating.
I can really relate to all that you say in your blog here Chris, thank you. I remember Kris Hallenga, founder of Coppafeel, saying in her documentary ‘Cancer is my Boss’ and I think that’s how all of us living with cancer feel. It’s very hard to have your day to day life dictated by this disease, and inevitably it changes us, mostly without our consent! Like you I am a naturally very sociable person and used to really enjoy big nights out. I used to often be the one organising them and bringing everyone together. But much has changed in the last 6-12 months since one of my best friends died from breast cancer leaving a huge hole in my life and my social group and I then started a new chemo myself which is taking a significant physical and emotional toll on me. I’ve come to realise that if I don’t prioritise self-care then I’m just not going to get through all that I have to face. It’s not selfishness, it’s survival. Like you, I can’t cope anymore with people who aren’t ‘straightforward’. I think that when we are in an ongoing vulnerable state, we have to know and to feel who we can trust and rely on. I have learnt this in the last year more than ever. So much in our lives is unstable and subject to sudden change, we need people in our lives who are willing and able to be our anchors. I’m also happier these days staying in, in the comforting presence of my wonderful hubby. No doubt our spouses do miss out on social opportunities because of us Chris, and we all wish things were different. But they love us, and want to be there for us no matter what (thank goodness!) We all have off-days, they are an inevitable part of life as a cancer patient, and those close to us understand that. I’m sure your family are tremendously proud of all that you have achieved in spite of all those off-days. Dealing with cancer drains a huge amount of energy from us every single day, and yet you have achieved so much in your work supporting other cancer patients and giving them a voice. Chris, you are one of the most compassionate and caring people I have come across and I think you do yourself a disservice labelling yourself as ‘selfish’. And yet it doesn’t surprise me because I think living with cancer triggers sporadically plummeting levels of self-esteem as we continually try to cling onto all the things that make up our identity. Just when we think we’ve lost enough, cancer always seems to want to take more (example – I noticed this morning that I have barely any eyelashes remaining on my right eye. A minor loss but one that made me want to cry nonetheless. They belonged to me, after all. And these losses have a horrible way of accumulating.) I understand how frustrating it is to have choice removed from your life. Last week I cried on my therapist because I was so sad about ‘underperforming’. I feel this in my role in Shine, from which I have had to take a backseat, but also in my relationships, because I feel that lately I am not ‘present’ in the same way for other people as I once was. The chemo makes me feel vague and fuzzy headed, I am constantly distracted by numbness in my hands and feet, dry eyes and overwhelming tiredness. So I daresay I am not the friend I once was. My problems seem to dominate and dwarf everything else around me lately. But does this make me selfish? I don’t think so. I hope not. I didn’t choose any of it. Some might say that I’ve been very unlucky. It doesn’t mean that I’m not a good person or that I love my friends or family any less. Just that I’m quite tired and have to work a bit harder at looking after myself. Because if I don’t, let’s be honest, everything will just fall apart and I’ll stop getting out of bed in the morning. It’s pretty tough having cancer. It can be very hard to explain and describe to others just how tough. So the fact that we keep going, and keep smiling, is actually really rather remarkable. We’re all just doing our best aren’t we, so we should probably all give ourselves a break. So enough with the guilt Mr Lewis! Please give yourself a pat on the back instead for reaching out to others and opening your heart. Maybe you don’t feel like leaving the house most days but your kindness and compassion stretches across time and space through the wonders of the internet and eases others’ sense of struggle and isolation. There’s nothing selfish about that xxxxxx and I’m guessing that’s one of the many reasons your wife loves you so much xxxxxx
Hi Soraya! Yes, I knew you would get it! You have written so eloquently exactly how I feel. It certainly does take an incredible effort to get going each day, and so much focus to attend hospital regularly and see that bits are falling off as the years go on smile emoticon Treatment takes it’s toll both mentally and physically, and the list of what you are losing seems to be longer than what you gain, but ultimately we are still alive and enjoy some incredible times with our loved ones and friends. I guess it’s the choice thing I find hard to accept. All this happens to us and there is very little choice, we must accept it all, and adapt, whether we like it or not! We have much in common, and I appreciate your kind words. I wish you well with your current issues, and hope you have one of those wonderful times we both appreciate when you are away. Big love, Chris xxx
thank you as always Chris we have a right to feel selfish some time in our lives its just the way life is I like your wife had to look after someone I loved who was terminal for a 29 years and I am sure your wife feels the same as I did we love our partner and we cope so what if you feel selfish sometimes you are not alone some people are and they are in good health and they do not have the right to be selfish but they are. Myself I feel so very lucky not to have suffered as you and many others have and I feel selfish at times so what!!! I have learned after being free from cancer for 12 months to do a little at a time, so what if it does not get done there is still another day. Thanks as always for your blogs Chris. xxx
Thx for your comments Georgine, they make a lot of sense. I have tried to change the way I see things but I think that even after all this time, I find it hard to take more than I give! Many people have mentioned that feeling of self preservation, and I know that if I am not well, life for everyone around me becomes difficult, so I have to focus on staying well which means I must rest more. My family and friends fully understand things, and I guess I must just accept that’s the way it is! So pleased that you have been able to pick yourself up from your own setbacks and continue to enjoy life. You are an example to us all! Chris xx