I need your imput

Calleen
Calleen Member Posts: 411
edited March 2014 in Breast Cancer #1
I posted a few weeks ago that I was chosen to be on the Breast Cancer Advisory Council for the Hospitial where I had my double masectomy. My first meeting is next Thursday. All of us have some kind of imput that may have made a difference in our care we recieved from begining to end. This committee is being made up of cancer patients and 7 Hospitial staff members.

This council is our voice. And I want to represent all of us in the best way I can. We know we are going to have future Sisters and the things we have learned along the way can certinly make a difference. I didn't go through rads or chemo so I don't know what input to suggest.. I remember one sister talked about a special blanket she recieved from her rad team. What creams/lotions are the best for rads. Those who had Chemo. What little things made you more comfortable. And also I would like to things that you wished would have been done to make you more comfortable. I am really excited about this oppertunity to be a voice. I know the little things make all the difference. I had some bad experiences at this particular clinc so I do know an area right away to bring up.. Being left alone in the waiting room crying is not very dignified. Every aspect of our Journey is so emotional and I feel the staff should be sensitive and respectful to our emotions.

Thanks!!!!

Calleen

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #2
    Let me think before responsing to your post ..
    Little things that made me comfortable .. changed from week to week ... thinking ...
  • chenheart
    chenheart Member Posts: 5,159 Member
    #3
    That my chemo team ( the
    That my chemo team ( the RNs) remembered my name every 3 weeks and welcomed me made me feel comfortable, and even a bit important. Not whoo hoo important~ but as an important soon to be Life After Cancer healthy woman important~! I was not "just" a patient, but a Real Person because they knew my name. Small, but important to me.

    I like what you are doing~ and that you were chosen shows something about you which we here on the boards already know! LOL

    Hugs,
    Chen♥
  • Cat64
    Cat64 Member Posts: 1,192
    #4
    Calleen
    Haven't been to rads yet, but as far as Chemo, the things that I have appreciated the most is first being HONESTY! From the Oncologist & Surgeon. Tell me the truth, don't "spare me" of any details. My Oncologist has been great about answering all my questions and at times, until he knew I understood! My first Chemo the nurse explained what she was giving me when,checked several times to make sure I was doing ok,and sat down with me at the end of the treatment,asked me if I had any questions,went over all the side effects and what I could take for them,what to expect,etc...that made me feel comfortable with the process. Can't really think of anything that I wished I would of done differently. Hope this helps. I know you'll do great!
    Cathy
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #5
    Cat64 said:

    Calleen
    Haven't been to rads yet, but as far as Chemo, the things that I have appreciated the most is first being HONESTY! From the Oncologist & Surgeon. Tell me the truth, don't "spare me" of any details. My Oncologist has been great about answering all my questions and at times, until he knew I understood! My first Chemo the nurse explained what she was giving me when,checked several times to make sure I was doing ok,and sat down with me at the end of the treatment,asked me if I had any questions,went over all the side effects and what I could take for them,what to expect,etc...that made me feel comfortable with the process. Can't really think of anything that I wished I would of done differently. Hope this helps. I know you'll do great!
    Cathy

    Hey Calleen
    Congrats again on this! I think it is so great. I didn't have chemo, but, I had the best ever rad techs and rads oncologist in the world. Or, I think so. I am the one that said they gave me a special blanket. The rads room is so cold and they gave me a blanket everytime I got zapped. One of the techs even embroidered my name on it, which I thought was so sweet. They played any kind of music that I liked and if they didn't have it, one of them would go out and get it for me. They offered any kind of refreshments that you would want for free. Water, juice, milk, sodas, coffee, tea, candy, candy bars, pretzels, all kinds of snack foods. They had big puzzles at a lot of the big tables for anyone to put together. They checked my skin almost daily and the rads oncologist himself saw me at least twice a week, which meant a lot. They gave out free a lot of the creams that we were allowed to use. They had a huge party for me when I finished. I will never forget it, never. And, they not only showed me my treatment plan and the computers etc, but, they allowed my hubby to be there, outside the rad door every treatment to watch me on the computer. That made him feel better and me too! There are so many more things, but, that is probably enough for now. I think the main thing is to always treat us with compassion, respect and sensitivity. Having cancer is hard, very hard, and, I think we do deserve extra special treatment from our doctors and nurses that are in oncology. Don't you?

    Sue :)
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #6
    Treat me as a person!
    So far ... the most meaningful thing that has happened to me by my care team was the first meeting with the onocologist. I was scared, overwhelmed. When I entered the exam room and put up that lovely paper gown and waited, my mind was running with the things I wanted to ask. I sat up on the table waiting and when the doctor finally came in she looked at me and said, "You are not a patient, you are a person. Sit in this chair and talk to me." I almost cried. She was humane, not distant, not cold, and her compassion that day ... I will never forget. I think what I'd tell those doctors is BE NICE AND TREAT US AS PEOPLE!
  • Calleen
    Calleen Member Posts: 411
    #7
    Dawne.Hope said:

    Treat me as a person!
    So far ... the most meaningful thing that has happened to me by my care team was the first meeting with the onocologist. I was scared, overwhelmed. When I entered the exam room and put up that lovely paper gown and waited, my mind was running with the things I wanted to ask. I sat up on the table waiting and when the doctor finally came in she looked at me and said, "You are not a patient, you are a person. Sit in this chair and talk to me." I almost cried. She was humane, not distant, not cold, and her compassion that day ... I will never forget. I think what I'd tell those doctors is BE NICE AND TREAT US AS PEOPLE!

    Thank you!!
    I am so excited to be a part of this team!! I can see the common thread is being treated with the respect we deserve!!! How we are approached by the staff makes all the difference... I would like to see them start a Sister program where one of us who have been throgh it walks beside the new dx sister to be a gentle guide. Who knows better than us??
  • m_azingrace
    m_azingrace Member Posts: 399
    #8
    Calleen said:

    Thank you!!
    I am so excited to be a part of this team!! I can see the common thread is being treated with the respect we deserve!!! How we are approached by the staff makes all the difference... I would like to see them start a Sister program where one of us who have been throgh it walks beside the new dx sister to be a gentle guide. Who knows better than us??

    Every little thing counts
    While chemo is not in my immediate future, I do get a monthly infusion of Zometa, which is administered in the chemo ward. The clinic I go to has a very caring staff. In my case, the infusion takes just 30 minutes, and really they could just "plug me in" and ignore me, except for checking the flow from time to time. Instead, they take an interest in me, the person. I notice how they interact with the chemo patients in the same way. We get warm blankets, pillows, beverage, snacks and there's also personal RV screen at each station. Maybe not much different anywhere else? They even have a chaplain there. I don't know if she is a volunteer or paid staff.
    Calleen, I think the idea of a Sister Program is great. I know from reading the boards here that there are so many patients who need someone with similar experience to turn to. God bless you. Gracie
  • mimivac
    mimivac Member Posts: 2,143 Member
    #9
    Calleen said:

    Thank you!!
    I am so excited to be a part of this team!! I can see the common thread is being treated with the respect we deserve!!! How we are approached by the staff makes all the difference... I would like to see them start a Sister program where one of us who have been throgh it walks beside the new dx sister to be a gentle guide. Who knows better than us??

    The sisterhood
    I like the sisterhood program idea, too. Yes, being treated like a human being and not a cancer patient is very, very important. Also, I hear many people complain that their doctor does not fully explain the procedures and that their questions go unanswered. Perhaps it would help to get a folder of reading material to refer to about chemo drugs, side effects, when you should call your doctor, etc. as well as how to reach the office on off-hours. I had to look up everything on the internet, and that's always a good place to look when you are just diagnosed and completely ignorant and scared. You're doing good work there!

    Mimi
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #10
    Calleen, I think what you
    Calleen, I think what you are about to embark on is both an honor and reflection of you as a person. The hospital that I had my surgery scheduled at actually assigned a "sister" to me. She was employed by the hospital. My first contact with her was via telephone. She called me to introduce herself and this just happened to be shortly after I had my needle biopsy and diagnosis. At that time, I had not found this site and had many, many questions. She spent at least 30 minutes on the phone answering all my questions. She, too, was a breast cancer survivor. She gave me her cell number and was available 24 hours a day. She met me at the hospital for some of my tests and was also there the day of my surgery. She was a godsend at that point in my walk down this path. If everyone could have someone like her it would be a tremendous help in answering the many questions and just being there for the support that is needed. Good luck to you!!
  • rjjj
    rjjj Member Posts: 1,822 Member
    #11
    MyTurnNow said:

    Calleen, I think what you
    Calleen, I think what you are about to embark on is both an honor and reflection of you as a person. The hospital that I had my surgery scheduled at actually assigned a "sister" to me. She was employed by the hospital. My first contact with her was via telephone. She called me to introduce herself and this just happened to be shortly after I had my needle biopsy and diagnosis. At that time, I had not found this site and had many, many questions. She spent at least 30 minutes on the phone answering all my questions. She, too, was a breast cancer survivor. She gave me her cell number and was available 24 hours a day. She met me at the hospital for some of my tests and was also there the day of my surgery. She was a godsend at that point in my walk down this path. If everyone could have someone like her it would be a tremendous help in answering the many questions and just being there for the support that is needed. Good luck to you!!

    Hi Caleen
    I am glad they picked you. You can make a difference for all of our sisters in pink!

    My chemo nurses were awesome, they gave me (and my hubby) breakfast, lunch, depending on what time I was there. Gave me wigs, books on survival, blankets, hats. They always hugged me and talked about whatever I was feeling at the time. They gave me free Emila (sp?) cream and tagaderms to put on for the future trips to numb my port. I am still going to them for my herceptn treatments and love them all to pieces.

    For Radiation I was out of town and it meant so much to me that the shriners would pickme up wherever I was staying and drive me back home. We became good friends after six weeks and I cried when I said goodbye to them. Also there were people in the waiting rooms that were there just to talk (volunteers). Although I never had to wait long I met some wonderful people in the waiting rooms. I also became close with my radiologists who would talk with me about my trips back home on the weekend and keep my spirits up. You meet the nicest people in the worst situations!!

    You will do great for us Caleen, and God Bless you.

    Hugs, jackie
  • BELIEVEx3
    BELIEVEx3 Member Posts: 24 Member
    #12
    Congrats on your voice that will speak for us
    Chemo, oddly enough it was the Pharmacist that prepared a calendar for me with all my AC dates, my post chemo meds including zofran decadron and neupogen as well as lab draws. She also suggested that I track how I felt with each treatment that it would help to plan for the other treatments. And I found that although each treatment was very difficult there was a bit of peace knowing what to expect.
    Radiation, was scarey for me I wish they would not have said it was a "walk in the park" compared to chemo. Each phase of treatment carries it's own uncertainty.. In retrospect I would want my physician to review in greater detail the potential side effects and long term affects of radiation. I have had a heart attack from radiation treatment although in my case it would not have changed the treatment protocol. Knowledge is power. The good news is that I still remember the techs singing to me in my moment of terror......
    Surgery, to respect me as a person not a breast and to know it does not take a breast to make a woman.....I was fighting for my life not my breasts........I began with a lumpectomy ( desiring bilateral mastectomies) and ended up with bilateral mastectomies later after another cancer.
    So listen to our hearts.................
  • KeriLee
    KeriLee Member Posts: 25
    #13
    Congrats!!!
    During Chemo I enjoyed the warm blankets provided by the staff, one thing I think would be helpful is support, I was fortunate enough to have my husband there for me every treatment, we'd play cards, read or watch movies (cause if you've had chemo you know that it can last a long timke), but there were so many that were alone. Having chemo is bad enough but those that are alone need someone there (other then tha nurses) to keep their minds occupied, it is a long day for the chemo patient and some company would be nice.
    During radiation I found a combination of AquaPhor and Aleo to be soothing. Best of luck in your new roll and please keep us all posted on whats happening!

    Keri
  • Katz77
    Katz77 Member Posts: 598
    #14
    making a differance,
    At my chemo center they have the " pink" ladies and gentalmen make rounds. They bring breakfast, lunch and yes ,sometimes dinner to use restrained to the chair. Offer snacks, warm blankets and portable DVD and movies. Nurses are wonderful, but we have a pretty busy (unfortunly) cancer center. The pink men and women are wonderful as this is all voluntary.
    There's al couple of ladies that crochet lap blankets and hats. Hope this helps ur program. Congrats on ur new honor.
  • tjhay
    tjhay Member Posts: 655
    #15
    Katz77 said:

    making a differance,
    At my chemo center they have the " pink" ladies and gentalmen make rounds. They bring breakfast, lunch and yes ,sometimes dinner to use restrained to the chair. Offer snacks, warm blankets and portable DVD and movies. Nurses are wonderful, but we have a pretty busy (unfortunly) cancer center. The pink men and women are wonderful as this is all voluntary.
    There's al couple of ladies that crochet lap blankets and hats. Hope this helps ur program. Congrats on ur new honor.

    Let me tell you about my
    Let me tell you about my getting chemo experince, mine may be a little different because it wa done at Vetrans Hospital.
    First off my sister went with me to all my before treatments which has good point and bad points, my doctor had a tendency to talk to her more then me which hampered things when I went by myself. The doctor seemed to not pay as much attention to my questions as he did to my sister who was my caretaker. Now I think that it is very important that the Doctor and the caretker have a good working relationship, and this is my point they both work for the patient.
    As far as treatment was concerned the nurses were wonderful, they treated like there was nothing wrong with me, they explained everything, they anwsered my questions even when we both knew that I had asked that question before. At the VA the chemo clinic is one big open room, and the majority of the patients were and are men, when another women was in the clinic (which was rarely) they always tried to put us togeather so as to support each other.
    The most important thing is that even when I go there now for my follow up appointments they still remember who I am, they ask how I feel, they tease me about my funky hair style, they make me feel as if they are my friends.

    tj
  • Calleen
    Calleen Member Posts: 411
    #16
    tjhay said:

    Let me tell you about my
    Let me tell you about my getting chemo experince, mine may be a little different because it wa done at Vetrans Hospital.
    First off my sister went with me to all my before treatments which has good point and bad points, my doctor had a tendency to talk to her more then me which hampered things when I went by myself. The doctor seemed to not pay as much attention to my questions as he did to my sister who was my caretaker. Now I think that it is very important that the Doctor and the caretker have a good working relationship, and this is my point they both work for the patient.
    As far as treatment was concerned the nurses were wonderful, they treated like there was nothing wrong with me, they explained everything, they anwsered my questions even when we both knew that I had asked that question before. At the VA the chemo clinic is one big open room, and the majority of the patients were and are men, when another women was in the clinic (which was rarely) they always tried to put us togeather so as to support each other.
    The most important thing is that even when I go there now for my follow up appointments they still remember who I am, they ask how I feel, they tease me about my funky hair style, they make me feel as if they are my friends.

    tj

    Thank You
    Ladies so much for the terriffic imput!!! I'm going to be working on an outline and put it into catagories for rads, chemo, surgery, dr visits, etc.. and I will be including all your experiences and suggestions... This truly is your voice!!! I really do get emotional when I think of what an oppertunity this is to represent all of you!! I can't help it.. I've wanted to give back and now I'm going to be able to!!!
    thanks again for your wonderful feedback!!!

    HUGZ!!!
    Calleen.. Now I'm gona go wipe my tears... and go back to work (my real job)....
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #17
    Calleen said:

    Thank You
    Ladies so much for the terriffic imput!!! I'm going to be working on an outline and put it into catagories for rads, chemo, surgery, dr visits, etc.. and I will be including all your experiences and suggestions... This truly is your voice!!! I really do get emotional when I think of what an oppertunity this is to represent all of you!! I can't help it.. I've wanted to give back and now I'm going to be able to!!!
    thanks again for your wonderful feedback!!!

    HUGZ!!!
    Calleen.. Now I'm gona go wipe my tears... and go back to work (my real job)....

    Calleen: Here you go
    Just my input ...

    Onc and staff:

    A) remember names of bc patients - for me, I am seen every week not every 3 weeks, so remembering my name is a given now that I am entering into week #10 of treatment

    B) Onc doctor and PA at my center look at me as if I am from MARS when I decide my side efforts of chemo TCH, however, my onc nurse that person who administers TCH and Herceptin chemo (having fought breast cancer & who has been thru the chemo treatments - 10 years ago is very smpathic) I hate the fact that my oncologist & PA are not on the same page of my onc nurse ... with regards to my side efforts of chemo.. onc nurse always tries to make me comfortable along with giving me suggestions on making my life comfortable, while my onc and PA - look at me strange as if I making everything up.

    Oncologist/PA & breast cancer specialist: Sugar coated my treatment timeframe (18 straight weeks of chemo), and side efforts ... I was told .. some fatigue and hair loss .. nothing more.

    I wish I had a 5 to 10 min. class on what to expect with chemo .. perhaps a walk thru, and maybe had 1 or 2 women call me before starting chemo .. patients who had experienced my type of TCH/Herceptin .. 18 week chemo .. I could of asked my 100 plus questions .. i.e. when to expect hair loss, what to eat when my metal mouth was present ... etc. My suggestion .. a 'what to expect' from chemo handbook (created by women & men who have been down the chemo path) ...

    On my first couple of chemo's .. my husband and I were treated very well, now at week #10 - again I go every Tuesday a.m. at 9:00 .. it's business as usual, and no one is too worried if I have something to drink or a warm blanket. Keep patient happy and warm, regardless of which treatment she or he is on -- #1 or #16 .. don't slack on patient care.


    VickiSam

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