What it Takes to be a Good Patient

Started by anonymous, February 05, 2015
54 replies for this topic
anonymous

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Posted on
February 05, 2015
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.
 
 
 
 
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Anonymous

Member
0 Replies
Posted on
February 05, 2015
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.
 
 
 
 
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Anonymous

Member
0 Replies
Posted on
February 06, 2015
Thanks for writing the article about "what it takes...". I am battling breast cancer for the second time, HER2/neu and estrogen positive. The Herceptin I took after the first episode of treatment for my stage 3A caused my heart function to diminish from an ejection fraction (EF) of 60% down to 23%. I am now in my 3rd year of treatment for this episode, after being cancer free for 6 years, and I still say, "Bring it on". What else is there to say? I sometimes don't feel that positive - some days I can only focus on what I call, "Lifus Interuptness". Because it seems that at every turn there is something else to do. Everyone wants to know, "how much longer will you be on chemo?". And I had a family member who said, "I would not do what you are doing. Why don't you just stop and live life to the fullest again?". Well, life is full already. I work at being the best I can be, no matter what. Does the cancer and the ongoing treatment limit me? Yes, of course. But life is about where we are at the moment, and using that moment, and every moment, to the fullest that life allows us. So I say to the family member - walk in my shoes - then say, "why don't you just quit?". Walk on. I'm not ready to quit.
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Anonymous

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0 Replies
Posted on
February 06, 2015
You go, Grace! Thanks so much for sharing your story and reminding us that we decide when and if we're ready to quit. Love the attitude! Walk on!
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Anonymous

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0 Replies
Posted on
February 09, 2015
It is hard enough teaching a teenager to drive without having to deal with cancer.
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
I am a constant patient since my initial breast cancer diagnosis of Stage IV 3 1/2 years ago. Being a good patient to many physicians means asking no questions, taking very little of their time, and doing what they think is best regardless of its ripple effect on the rest of your life and health. Unfortunately, there is no life after treatment for me, and the other 30% of breast cancer patients who develop metastatic breast cancer after successfully completing treatment for their original breast cancer. We will continue to be patients receiving treatment for our cancer until the day we die from cancer. As the side effects accumulate, and the number of medical appointments and medical bills increase, it becomes harder and harder to be a "good patient"--no matter whose definition is used. I'm so happy for you that you are able to make the choices that work for you. I wish we all could.
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
oh, your story made me cringe, been there many times. I dealt with a compassionless radiology office - and I tolerated it as a "good patient". I realized that I didn't want anyone else to go through what I was, and it was my purpose to correct this mistreatment. I am still learning to speak up for myself. I'm way to compassionate and empathic - and hate to make waves. I'm the perpetual 'good girl' which really made being a patient very hard work. At this point, the hard work of being good to myself continues. I still have all kinds of issues due to cancer treatment, and from redirecting my journey. The balance I find is speaking my truth in love when I need to, and not stuffing. Yeah for you for calling the office back. Bravo - you have saved another patient from the pain you experienced!
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
You can answer this in private if you wish, but two things in your article were unclear. Why did you have a mastectomy instead of a lumpectomy? I have heard some fellow cancer patients choose mastectomy for stage 0 just so they don't have to worry about it (so to speak). But that is not your situation. I am not clear if you went in for a bilateral mammogram or a mammogram of the other breast. If one has a mastectomy how could you even have a mammogram on that side? I am sure you are aware some would like to rename stage 0 with some other name besides cancer. I get really frustrated when I read such articles - like changing the name would somehow make it not cancer. Thanks.
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
Deb, The definition of a "good patient" can mean so many things. I do all the dutiful things like arrive early as asked and then wait well past my scheduled time. Oh, yes, life happens. This is my third year recovering from a mastectomy and dealing with post mastectomy pain. I know that I have to be an advocate for my self, otherwise, concern does not get addressed. I am a retired ICU nurse with 30 years experience so I do know what we are all dealing with at times. I have had to be fairly aggressive to get my questions answered, because if I am not, I continue to get the responses like "dear, you have been through so much: don't worry, time will make it better". These people man well but it lacks an answer. Breast cancer patients are becoming much more knowledgeable every day and the medical community is slowly realizing that. But it took the medical community over a year to diagnosis my past mastectomy pain syndrome. I finally had to say, "does this condition have a name?" to get an answer. I say to all women that I know experiencing breast cancer/RX, to keep on asking and asking. Yes, it is very tiring but I write down all my questions/concern as they surface so when my next appointment is due, I am ready. Thanks for being there for all of us.
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
Michael: It certainly is! I actually thought I could handle it until it became painfully obvious that it was just too much for me.
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Anonymous

Member
0 Replies
Posted on
February 09, 2015
Barbara W: I can't imagine being in your situation. All I can say is to reiterate that I believe being a good patient means doing the best you can, for yourself, at the moment. I wish you all the best.
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