When I was checking through the statistics of my blog recently, the most searched for post was this one which I wrote over a couple of years 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.