It’s not easy to be good at something you hate, especially when it comes to being a patient.
Having lived through two miscarriages and infertility before cancer hit, I had basic skills. I knew how to show up (on time) for appointments, wait patiently no matter how long it took, honestly answer questions and listen intently.
But cancer took being a patient to a whole new level. There was a new language, not much time to learn it, and much more on the line, like the two children we now had to worry about.
Being older and more experienced than I was when we struggled with infertility helped. When I was diagnosed with cancer, I was somehow able to stop my breast surgeon as she explained the “how” of my mastectomy to insist that she go back to the “why.” To prepare for an intelligent conversation about reconstruction with my plastic surgeon, I researched options at credible Internet sites.
I tried to ask questions, speak up and be my own advocate. As time went on, however, cancer wore me out and I had less and less energy to assert myself.
After my unilateral mastectomy, I returned to the breast center where it all began. I was there for my first mammogram after my surgery and it was like going back to the scene of the crime.
I was already emotional, but holding on, when the technician came into the waiting room and proceeded to grill me as to why I needed a mammogram.
Once inside, she still didn’t understand (despite the fact that she had my records) which caused her to wonder (out loud) if I knew the difference between a lumpectomy and a mastectomy. Finally, she debated whether I really had breast cancer (because it was stage 0) and opined that having a mastectomy meant I “didn’t have to worry about it anymore.”
I tersely answered her questions, but didn’t protest her behavior. I had every right to make a scene, but didn’t because I was afraid of falling apart and all I wanted was to get out of there in one piece.
The next day was different. I called the breast center, asked for the manager, and explained what happened. She was empathetic, validated my concerns and handled the situation. Even so, I immediately transferred my records to another breast center. The emotional reaction I had just walking into the building was too painful and there was no reason to subject myself to it again.
And yet, I subjected myself to many other things I couldn’t handle. The worst was probably attempting to teach my teenage daughter how to drive. The day we were in a parking lot and she hit the gas instead of the brakes, I lost it and ordered her out of the car.
After I calmed down, I realized that teaching a teenager to drive while dealing with cancer was just too much for me. When I told my daughter how hard it was and that I needed a break, she understood and was relieved.
In a perfect world, we’d be prepared for every medical encounter with a steely resolve, a list of questions and at least one companion in tow. In a perfect world, our real life stresses would abate until we were better able to deal with them.
In the real world, we’re often surprised by bad news, reeling and alone. In the real world, our anguish doesn’t end with treatment despite the pressure to be “over” cancer.
Cancer taught me that being a good patient means doing the best you can, for yourself, at the moment. Even now, six years out, it means easing up on expectations and acting with self-compassion when test anxiety resurfaces.
Are you a good patient? Do you take good care of you or do you expect too much of yourself? Tell me in the comments. I respond to every one.
Debbie - thank you for sharing your story! Cancer taught me to start living and in many ways it saved my life. Now I spend my days connecting people to those who share a similar health related experience. Cancer inspired me to do for others! As a survivor and entrepreneur I work tirelessly at my mission to make health social while keeping it private. I glad you are living beyond cancer and thank you again for sharing your experience to help others! If you have an interest in sharing more, I know the folks we support on www.TreatmentDiaries.com will have an interest in learning from you!
I was diagnosed in 2013 with Stage III colon cancer. I am divorced and live with 3 old cats, which takes a great deal of patience just to meet their needs. I found myself (during my 12 rounds of chemo treatments) constantly worrying about whether my lab every week, would be good enough to take my next treatment. I worked every day, then would drag myself home, tend to my beloved needy cats, and try not to focus on the lab. Friends would call and ask me if I wanted to do this or that, but mostly I just stayed home and tried to not put myself around anyone who might have a sniffle or cough. My life sucked. I didn't feel all that bad, but was tired. Those 5-6 hour chemo treatments really took it out of me. I found myself not wanting to do much of anything. I finished my last treatment in March of 2014. So far....all is good. I still seem to have that short fuse from time to time, and regardless of being told I am now "cancer free", every 4 months I both dread, and look forward to my appointment, mostly just to get one more under my belt with no elevation in my cancer marker numbers. I live with that thought every single day of my life. Where I live we don't have a women's cancer group, or even a cancer group at all. I would so love to talk to others who have been where I am, and find some way of not having that nagging thought at the back of my brain every single day, that what I am eating might stir up the cancer again, or not resting enough, or not exercising enough, or not drinking enough water....on and on and on.....
I know I am curt from time to time, and I always recognize it and apologize, but I just can't seem to break free of the looming "cancer thoughts" that invade my mind. I wake up every day, look out my window and thank God for letting me see another day. I am so blessed and so very grateful for life and to share what I have with others, but I also feel a certain emptiness. I don't have any children, I'm 68 years young, work full time, and have great friends...just none who have gone through this. Maybe as more time goes by, I will not think about it as much. I do know one thing, this whole cancer thing has made me a FAR better person. Little things? They don't exist in my world any more. I just wonder how many others out there feel just like me?
I do enjoy reading your blogs and sometimes chuckle at similarities. Thank you for sharing your life and experiences with us. Oh, and happy Valentine's Day!!
After reading your article, I guess I am not a very good patient. I am still waiting for the cancer to be "over" and can just make it day to day.....even after 2.5 years and 2 types of cancer. I know I am stressing about stress which will make me unwell. I panic at the thought of "getting on with life" only to worry about another cancer happening and starting all over again. I receive care at an excellent facility and even volunteer as a Patient Family Advocate but other survivors I talk to only want to talk about their cancer ad nauseum----not about life after cancer. Is there one right thing to do or not do yo get out of this Catch 22?
Thank you for bringing up this issue. It is often neglected. When you have cancer many people including doctors and family members expect you to subject yourself to any suggested treatment and to be a "good patient" in the sense that you have to be at your best behavior - arrive on time, tolerate lack of respect to yours and accept any medical staf opinion regardless of their expertise or manners. 14 years ago I was diagnosed with stage 4 colon cancer with a metastatic tumor to my brain. We have just moved to the US with our 3 years old daughter and a month before I was diagnosed I gave birth to a healthy baby boy. Life was happening for sure. For a long year I battled with cancer and went through 3 surgeries, radiation therapy, chemo and clinical trial. There are a defenately a few lessons I've learned about being a"good patient". First and for most is what you say in your article - to do what is best for me as a patient. Perhaps because I grew up with a mother who is a nurse and was used to being around doctors and medical staf I was less inclined to accept their word as definite and unchallenged. The second important lesson was to trust my own instincts and feelings. I know my body better than anyone else. Another lesson was to demand the same respect as I gave and speak my mind. When a specialist once told me that she is not concerned about a certain aspect of my health I simply told her that since it's my body and my health whether she is concerned or not does not matter to me and went someplace else. I was concerned and that the only thing that mattered. I was always courteous and polite but assertive as well. Like you, there was a time that I was just too exhausted and distraught to argue and let others decide for me. I lived to regret it (The fact that I LIVED to regret it is a great comfort). Cancer is difficult because no one truly is able to tell you why you got sick and the pragnosise is based on statistics as much as it is based on your individual case. And it never goes away. 14 years in remission and after beating cancer against all odds in some part of my mind I know it is never over. I won the battle but I can never tell if I won the war. But I know that if I ever have to fight again, I am better equipped to do it. Being pro-active about my health is a priority as it should be for anyone.
I was diagnosed May 2014 invasive ductal carcinoma stage 1. My biggest problem has been the side effects of tamoxifen. I feel that my Oncology doctors have not been so concerned because it is stage 1. I had so many problems with my ovaries, that my GYN doctor removed them. Now I think I no longer need tamoxifen, but my oncology doctir doesn't seem too concerned. I feel that I am overreacting. On a side not my oncologist treated my father for 8 years for colorectal cancer; he died Oct 2014. I just feel overwhelmed with cancer. I've joined a support group. I hope this will help