What I would tell my providers….

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.

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23 comments

  1. rachaelsladylumps · September 18, 2012

    Amen sister!

    Like

  2. playfulpups · September 18, 2012

    Excellent points! And I hope some medical professionals come across this and read it, because they need to realize how their actions and decisions they make directly affect patients!

    Like

  3. bethany · September 18, 2012

    oh yeah… go get ’em.

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  4. lianne cawood · September 18, 2012

    Love reading you … brings back memories, both good and bad. Some which I buried and need to deal with etc etc. But re our team … mine were what kept me sane, I loved them all, my oncologist, my cancer surgeon, my plastic surgeon, my chemo nurses etc etc, but …. I think I lived in a fantasy world, because I needed to, where I believed I mattered more to them than I did. The alternative was just too horrific to comprehend … I needed to matter to them, because they were the only ones who understood. Yeah right. I so hear you. I remember now the countless times I had to and still do remind my oncologist what we did, where I am, how far I still have to go etc etc … and I know I am one in a cast of thousands and becoming less and less of a starring role, but really, just 5mins to review my file before you see me. Is that really too much to ask? So with you, time to speak up. xx

    Like

    • mainelyhopeful · September 18, 2012

      “I think I lived in a fantasy world, because I needed to, where I believed I mattered more to them than I did.”

      Boy is that the truth!

      Like

  5. Shaunna · September 19, 2012

    Well said! I just wrapped up a series on “what it feels like to have cancer”, and you hit the nail on the head when it comes to physician care. So much of what you said brought me right back to my own cancer experience. I feel I had the best team for my case, but alot of times they didn’t talk to each other or pdf case notes to each other (unless I badgered them numerous times). Nothing worse than having a follow up with my breast surgeon, and she was shocked to see me in a bandana….having no idea that I just finished up chemo. I agree with you on the test results….if they prescribed a test or procedure, they absolutely need to call to give you the results. What is it about our society that makes the customer service null and void in the medical field?

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    • mainelyhopeful · September 19, 2012

      In all fairness, I do feel I got very good care and while this was happening it didn’t feel important enough to comment on (in the grand scheme of things) but I have the time now 😉

      Like

  6. Susan · September 19, 2012

    Oh Susan you Can speak for me, what you say is the Truth! So many things you so eloquently write about are in my heart but I cannot express myself like you! Thank you Thank you for this!

    Like

    • mainelyhopeful · September 19, 2012

      I read your blog and you express yourself just fine! But I know what you mean. Sometimes someone else says exactly what you are thinking.

      Like

  7. valerianfields · September 19, 2012

    Health care personnel are talented, smart and compassionate. Or not. When we get a winner, we’re incredibly lucky. But on the other side of that coin are people who have no business dealing with patients. Sorry you’ve had such crappy experiences.

    Like

    • mainelyhopeful · September 19, 2012

      Or they need to think about us as individuals, not diagnoses. That would be a start!

      Like

  8. lmw · September 19, 2012

    It is interesting reading your perspective having had to go through this in a different country/culture. I often wonder what it would have been like to deal with this in the US. I suppose there are pluses and minuses to both. Here in the Netherlands they really treat the patient rather than the diagnosis…even despite the language difference for me. I feel like I’m on another medical planet. 🙂 The US has a LONG way to go in patient care…here’s hoping they are on the path to improvement.

    Like

    • mainelyhopeful · September 19, 2012

      It is interesting to read about experiences in different countries, from treatment plans to patient care.

      Like

  9. Tia · September 22, 2012

    you have been a wonderful source of support for me while going through the cancer with my husband and after he passed away, being able to read your thoughts because he was too distrought to acknowledge there may not be a tomorrow gives me comfort and a smile through tears on the bad days, I sooooo remember looking at the doctors while they went through the course of action what they would do what they wouldn’t do, names, oh the names, I can’t even pronounce half, and just thinking to myself what are you saying because I haven’t caught half of it so he hasn’t caught any I’m sure. When they would ask do you have any questions it was always the same, what is his prognosis, that was all we wanted and they would never answer. I wonder somedays if he would have done things differently if he had known how much time he had left. But that just keeps me living in the past and I have to get away from there and try to move forwar, right. For tomorrow like he did. There is always tomorrow that I need to get to.

    Like

    • mainelyhopeful · September 22, 2012

      I’m glad you got some comfort reading me. Likewise, I learned from your perspective as a caregiver, though my course was very different from your husband’s.

      Like

      • Tia · September 22, 2012

        No matter what the outcome, no one wants to hear the c word, it’s scary. Being the caregiver you feel helpless because there is a line you have to stop at, you can’t cross it no matter how desperately you want to. To see those ill and what they have to go through, no matter what type of course they are having is challenging. I said to my husband many times I didn’t think I would be able to do what he was doing. I said it before and I will say it again you are the true heroes, you are brave beyond belief, what you face each and every day and still continue to carry on with a smile and courage, you are all true heroes.

        Like

  10. lightscanceraction · September 22, 2012

    I have a friend who regularly says “There is no care in healthcare” and it’s so true much of the time. You really do have to be your own best advocate. I have had so many people tell me not to Google and research things, but if I didn’t, I wouldn’t know, or at least wouldn’t know what questions to ask. I am finding the best source of information is other women who have dealt with breast cancer. (For example, I really had no idea about learning how to do the eyebrow thing!) So thanks for being out here in the blogosphere!

    Like

    • mainelyhopeful · September 22, 2012

      Oh you definitely have to be your own advocate and a good physician would encourage that, but honestly after months of weekly and then daily treatment you get weary of it and it would be nice to be able to just coast through and trust that they’ve got your back for a bit.

      Like

  11. gozzygirl · September 26, 2012

    I can totally relate to this post. When my oncologist for the fifth time asked me if I had a pic or port (and I was wearing a sleeveless top), I told him “Neither, and it would be appreciated if you could read my file before you come in.” His response was that I was one of thousands of patients. But then again, this is the same oncologist who, when I asked him about having the “all clear” at five years, replied “You’re never cured. Even after 20 years it could come back.” Great words of wisdom for someone with stage I cancer who was told by the first surgeon not to worry about anything. But then when I think back to school and who was really good at science, a lot of them were introverts, which may explain the lack of bedside manner.
    Maybe when all this is done, you can write your cancer center a letter with some suggestions for improvement. Even if you don’t send it, it could feel good to get it out.

    Like

    • mainelyhopeful · September 26, 2012

      Wow.. your guy takes the cake. One of thousands? Must have really made you feel special. yikes.

      Like

      • gozzygirl · September 27, 2012

        I guess I shouldn’t complain. At least we have “free” health care in Canada. And now my family doctor is following me. And she’s awesome. So it’s not all bad.

        Like

  12. breastcancerat40 · October 2, 2012

    Loved your post! Spoke to me and I’ve gone through similar (but more diluted) experiences myself.

    Like

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