We asked several people who are living with cancer to tell us what they wish someone had told them before they started to receive treatment.
“I wish someone had told me early about the importance of obtaining a second opinion at an academic cancer center. I was concerned that my medical team at my home hospital would be offended if I sought a second opinion. I’ve since learned that they would have welcomed a second opinion.”
“This is a tough one. I am not sure what I wish I could have been told. I have found we all have different emotional needs and ways of navigating through this kind of experience. What you tell one person, another person may not want to hear. The most important part for me is focusing on one day at a time. Making the most out of that day, keeping my chin up, trying to enjoy the good things, and trying to find what humor I can in the bad ones.”
“I wish somebody would have told me how much time I would spend explaining my cancer to people. Treatment is often different for metastatic breast cancer, and so are its effects. That means that I don’t look like a cancer patient, so people often think that I must be getting better. It’s uncomfortable on both sides of the conversation when I explain that aggressive treatment is generally used with curative intent, when a disease might yet be eradicated. In fact, many people don’t realize that not all cancer can be cured. When I explain, people often try to cut me off, telling me not to be negative, as if denying the reality of my disease could somehow protect me. I am an incredibly positive, optimistic person, but wishing won’t make my cancer go away any more than it will make everybody understand what it means to be incurable. So much explaining is exhausting.”
“Take every opportunity to laugh at your situation. It takes time, but some of this stuff will be so ridiculous that it’s funny. (Crying is okay too…feel it all.) You see, the thing is that this — this awful situation — is your life right now, and no matter how it ends up, you have right now. Spend your ‘right now’ laughing and loving as much as possible. It will inevitably change the way you experience cancer for the better, because how you experience this is largely up to you. If you let it, if you look for it, this experience can change your life for the better.”
“I wish someone had told me honestly and thoroughly how much collateral damage could, and, in my case, did, result from cancer treatment. I was not informed by my doctors about the potential extent and longevity of cancer-related fatigue, scar tissue, and pain from surgery and radiation, cognitive changes, and the ongoing lack of stamina that I still live with, nearly seven years later.”
“That it’s a marathon, not a sprint. When I was first diagnosed with stage 4 breast cancer in February 2008, I was so obsessed with showing no evidence of disease and trying to do everything to ensure that, it made me feel like I failed somehow by still having cancer. I know now that I can truly live with cancer and appreciate each day I’m alive and feeling well, and still have hope for the future.”
“I wish I had been better prepared for how I would feel when cancer treatment ended. I just assumed I would pick up where I had left off and get on with my life as if cancer had been no more than a blip. I wish someone had told me that cancer doesn’t end when treatment does. That after cancer, I would feel a mix of emotions, which would often confuse and sadden me. Sometimes, there can be a code of silence surrounding the aftermath of cancer treatment. We are expected to be happy and live with a renewed sense of purpose after cancer, but I struggled to make sense of things at this time. My feelings of isolation and loneliness led me to set up my blog as a place to share with others what I wished I had known about the end of treatment.”
Are you living with cancer? What’s one thing you wish someone had told you when you were diagnosed?