Calling all TNs
Comments
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Thanks Luah. The oncology cardiologist thinks mom's heart should do fine, although to be honest it was a bit weird that the Dr. hadn't even heard of the very common medication ( tryptophan?) mom takes for her tachycardia. The woman didn't seem the least bit caring or interested in mom at all. She seemed to regard mom as just another name on a chart and was quite dismissive of her concerns. Didn't really want to discuss much or answer any questions - just wanted to get her out the door and get on to the next person / chart. At one point the cardiologist claimed only 10 to 20% of patients get heart side effects and yet when mom commented that 20% was a lot, the cardiologist huffed and said oh forget I said 20% - just believe it's only 10%. Huh ? Why is it that so many specialists don't seem to see the human patient and just treat you as a 'case' and talk condescendingly to you. Ironically when mom asked another question, the cardiologist told her to ask the oncologist and yet a few weeks earlier the oncologist told mom to ask the cardiologist the same question.
Sometimes you want to grab them by their lab coat collar, back them up against the wall and say "look us in the eyes, genuinely listen to us when we speak and think before you speak to us". We are not just a disease and we are not just a bunch of symptoms. We are real live people so don't treat us like we're imposing on your time and straining your patience by asking questions that will affect our well being and our very lives.
Arrg! Rant done for now. Thanks for understanding.
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Suzette5956-After my MS my oncologist didn't want to see me for 3 weeks since she didn't want me starting chem until 5 weeks after surgery. If I'm counting right you won't see your MO until 6 weeks after for surgery for you. You might want to talk to your surgeon about the timeline or perhaps your MO's staff.
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TryingToSaveMom - Rant away! I definitely can relate to your post. I felt as those rads was a big factory - an assembly line. I would wait for at least an hour, one day a week, for 6 wks, to see my rad onc briefly - he would look at my skin and say "great". The only congenial conversation we ever had was him talking about how awful his teenage daughters made his Christmas. (He said he, "actually wanted to cry by Christmas evening". My rather insenstivie remark to him was, "My Christmas was great!"
My rad onc alway started with, "How are you?" - I always responded with, "Great" - When asked if I was having pain in my radiated breast, I told him I was. He asked why I had not told him before - I told him because he had not asked and why did it matter? What was going to be done about it? He looked at me, smiled and told me "nothing"....
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Here's another one....When I saw my MO for post-op visit, he did not even give me the courtsey of reading my path report before entering the room. He sat in the room and thumbed through it - then apologized for not reading it previously. Then he asked me if I had any questions. How the hell could I have questions about my path report if I did not have a copy and he had no clue what was in it? I told him no and requested a copy. I had to read for myself that I had an "incomplete response to chemo" and possibly have metaPLASTIC BC. Possibly? WTH? He could have mentioned that. So, I googled my way through interpreting my path report myself. When I had questions, I researched on-line for answers - Mayo Clinic is one of my favoirite sources.
I finished rads last week. I am supposed to go for a skin check on Thurs - oh yea - have him look at me and say "yep, looks good"....and then have him say, "I wish I had the secret for how to be so positive like you are." ummmmm.....whose the doctor in this situation.... Nope- no skin check for me next week - I am doing great and do not plan to see that guy ever again.
As for the MO - I cannot bear to go through his crap now, either. I have, however, made my yearly exam appt. with my gyn - she listens, she cares, she gives me hug when I need it - She does not complain to me about how awful her life is!!!!
Whew - sorry for that rant! It felt good to share - Thanks
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...one more thing while I am on roll...the rad nurse told me that I would probably have a tough time now that rads was ending as I would miss the security blanket of the staff at the rad center - NOT - I practically ran out the door and never plan to return to that center, ever again. If I have a recurrence, I will drive 2 hours, instead of 1, to go to a rad center in VT! Miss them? Miss what? I almost laughed when she told me.
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My schedule is onc every 3 months and BS every 4 for first 3 years, then onc and BS every 6 months for 2 more years. Onc does blood work every visit. He gives me a breast exam as does my BS. My BS is a tiny soft spoken women, but boy after I leave her office I am sore for days. She really does a thorough exam! She also has me on a 6 month mammo schedule for my remaining breast.
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I see my Onc every 3 months, my BS told me not to come until I've had my yearly mammo which won't happen until April and I haven't seen him since August. I don't like him anyway. I have my first follow up appt tomorrow. Think my nerves are starting up now.
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You'll have a great appt. Heather!! I only got nervous on my 3rd follow up because I was having back and rib pain. A bone scan showed no problems-turned out to be strain from physical therapy for my frozen shoulder.
I will be thinking of you tomorrow! Think good thoughts!
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Wow, interesting experiences. I must say I "love, love, love" my RO! He is the warmest doctor I have ever encountered. He literally hugs me at the end of every visit and his warmth is truly genuine. At my last visit he asked me if I was in any pain and when I said it hurts, he asked the nurse to write a script for pain meds. I had plenty left over from previous surgeries so I didn't need them. He changed my radiation protocol and had the nurse give me a complete burn care kit. And oh, when he sees one of my family members in the waiting area (my son or husband) he goes up to them, shakes their hand and exchanges pleasantries. On the other hand, I've seen so many rad techs that I don't feel any connection with any of them, nor do I feel any obligation to do something for them when I finish on Thursday other than to give a very sincere "thank you." Maybe I'll write a little note. I've probably had at least 8 different people. They are all very nice, friendly, etc. But it's not the same as the relationship I developed with my chemo nurse, for example, who was the only nurse who took care of me throughout all my treatments. I have my second followup with my MO later this month. The first was three weeks after finishing chemo, now it's almost four months later. I'm not sure what the ongoing schedule will be - I'm sure we'll talk about it at my visit.
When I was in the KC area, I went to the same breast surgery practice as TifJ ( I think) and she was very thorough. I don't have a BS here, don't need one now that I have no breasts, and I am assuming my MO will be responsible for all future follow-up care.
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Michelle- yes, we had the same BS practice. I have never met your Dr. though. Hope you are feeling well!
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Tif - I never met Dr. Jew, either. But I think both she and Balanoff must be the same size, quite tiny!
I'm doing OK, almost finished with rads (3 boosts left to scar line). I've got some nasty open sores but they will heal. They gave me a burn care kit, and it is helping. Otherwise, I feel fine.
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So glad you are almost done with boost, LuvRVing. I just cannot bear to go to a doctor this month. (Just finished rads last week). I am not going to see anyone until the 31st when I see my gyn. I just need a break from appointments, waiting rooms, etc. My car is currently not working, so I have a great excuse to stay home!
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I liked my doctors but I HATED every second of every moment I was in a doctor's office being treated. So much so, that they thought I was depressed. I wasn't "depressed" but I sure as sh*t had places I'd rather be, and it showed through every inch of my body.
In fact, I actually chastised my husband for being too jolly during visits. I told him, "This is *cancer*... not some f*cking social call". That shut him up.
I have *never* gone back to the treatment center and get out of my onc's office like a cat with its tail on fire.
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Glad to hear you are almost done! The sores though sound pretty painful- I hope the burn kit gives you some relief!
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Hi guys, "quick" update on me. I'm still in the hospital. Still tachycardic, but my shortness of breath is slowly improving. Had some edema in the lungs yesterday, so they gave me Lazix which I guess helped. Today I am having my left lung tapped to make me more comfortable, I'm pretty sure I know what the cytology report will show, so it really won't be a surprise. I have had two blood transfusions, so I'm not anemic any longer.
My MO's goal is to get me home tomorrow on oral antibiotics, and we will work on a chemo schedule that will allow me to take my cruise. I love my MO.
I had been getting a bit scared that I wasn't going to leave here, as I just don't seem to be going in ANY direction, good or bad. But my doctor swears she's getting me home, and better.
Talk to you all later. Hugs.0 -
Suze thanks for filling us in. I sure hope she is right and gets you home soon and feeling well.
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Suze, hoping you recovery quickly, you can't miss that cruise.
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Suze- Sending good healing vibes. Definitely need to get you better for the cruise. Sounds like you have an awesome doctor.
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Hang in there Suze35 we are all praying for you.
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Suze- keeping my fingers crossed you feel great for your cruise!
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Good Morning ladies, well today is my one year cancerversary. I can hardly beleive it. Am obviously feeling very reflective today. Its kind of odd going through the day today, Getting the kids up for school, making lunches, going to work everything so normal today....yet for me it isnt...am thinking of how my year changed forever a year ago today...2pm to be exact...never to be the same....things I could have never predicted that would happen but through all of it, the tears the fear I am realizing I found me.....thank you to all you wonderful ladies who have been here through all of it.
Hugs Kymn
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Suze - thinking of you and sending prayers that you'll soon be home.
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Congrats Kymn! -- I'm a newcomer -- just starting my journey (1st chemo on Thurs), but I appreciate hearing wonderful, hopeful news like yours.0
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Hello my TN sisters - I just got great news....results from my core biopsy are benign!!! Just some junk left over from radiation. Thank you all for helping me through this!
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Doing the Happy Dance for you Hope!!!!!
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YAY for Hope!!!
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Kym....Congrats!
Hope.....Yippee to crap left over!
Suze....I can't wait to hear about your cruise...:)
Have a wonderful day everyone!
"as i stand at the edge, i'm reminded how fragile life can be. now if i can remember to look at the the beautiful view."
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Kymn: Congrats, what wonderful news.
Hope: Ditto! So glad it was just junk
Suze: So sorry you are still in the hospital...you really deserve that wonderful cruise sweet friend. I'm confident you will get well soon and have a wonderful time!
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Kymn congrats on your one year, u will have many more to come!
Hope so happy for you!!!!!
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Hope that is wonderful to hear,
thanks everyone
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