All Sisters please read and coment... It's all about us!!!
Calleen
__________________________________________________________________________________________
The voice of the Patient:
Every step of our Journey is so frightening!! I cannot express enough how emotional it is and how easy it is to go from laughing to crying in a split second. Our bodies have betrayed us and we have no idea in the beginning of what lies ahead. I have gathered info from not only my experiences but from my Sisters in pink all across the US and Canada. This is our voice and I am honored to be chosen to represent my Fellow Sister Warriors. From personal experience I know our Future Sisters in Pink will have a tough road ahead and anything I can do to make their journey more comforting will make my Heart and Journey complete.
1- Remember our Names
2- Treat us with compassion, dignity, respect, and a lot of sensitivity
3- Complete Honesty. Don’t spare the details unless we can’t handle them
4- Be very patient with us until we have asked every question we can think of and we completely understand.
5- Sit in a chair across from us and look us in the eye. Especially on all first time visits with the various Doctors
6- Inquire if we are going to need financial assistance and direct us on how to go about it.
7- Create a Sister program for newly DX Brest Cancer patients. Pair them with one of us or hire a full time Sister in Pink to be there every step of the way.
8- Create a folder with information about our particular cancer and suggested reading material ie. The Breast Book by Dr. Susan Love. Different drugs and side effects, local support groups, suggested web sites, when you should call the doctor.
9- HUGS.. Can’t seem to get enough
Chemo:
1- Explain every step. What the medicine is and what all possible side effects might be
2- Have suggestions for what to take for possible side effects
3- Suggestions for foods to stay away from and those which may be tolerated more easily.
4- Have volunteers to sit with those who have no one to be there for them.
5- Warm blankets, pillows, snacks, movies, cards, puzzles, books.
6- Little gifts for milestones met.
7- Free emila cream and tagaderms to put on ports to numb before they get there
8- Offer meals for the guest with patient.
9- HUGS
10- From 1st visit to last remember us. And not like we are just a number
11- Make a calendar with dates of treatment.
12- Offer prayer
13- Celebrate with us on our last visit!!!
Radiation:
1- Play music the patient likes
2- Toasty Warm blankets.
3- One Sister told me the rad team embroidered her name on a blanket and gave it to her. Made all the difference in her mood and experience.
4- Offer a variety of refreshments
5- Offer prayer
6- Let loved ones sit outside room
7- HUGS
8- One Sister said the rad team sang to her in a moment of terror.
9- Have volunteers in waiting room available to visit with patients
10- Offer different creams/ lotions. One Sister had good results from a combo of aquaPhor and aloe
11- Celebrate with us on last visit!!
Tests
1- Be patient. We are very very terrified
2- Tell us in advance what is going to happen and if blood will be drawn etc.
3- Caring staff. I was prayed for by a nurse before she stuck me and I’ll never forget how comforting that was!!!
4- All possible side effects from contrast material used. what is in the contrast
5- Don’t give us any unnecessary tests. Wait to see if chemo is going to be needed before the heart test etc.
6-
Comments
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Calleen
Look very good. One comment - healthy snacks. In my Chemo units they have snacks chips, soda, crackers... Opposite to what dietitians have recommended. I am suggesting at least fruits like bananas or apples, granola bars, etc.0 -
Fantastic
Calleen, you have very thoroughly captured our thoughts, concerns, needs, feelings and more. You are a great spokesperson for all of us and we thank you for all your efforts on our behalf. Hopefully the advisory board will take all this to heart. It will make our journey a little better knowing people care and are there for us when we need them the most. Thank you again for your care and love. Waiting to hear how it goes!0 -
Calleen ♥Sunrae said:Fantastic
Calleen, you have very thoroughly captured our thoughts, concerns, needs, feelings and more. You are a great spokesperson for all of us and we thank you for all your efforts on our behalf. Hopefully the advisory board will take all this to heart. It will make our journey a little better knowing people care and are there for us when we need them the most. Thank you again for your care and love. Waiting to hear how it goes!
♥
I think this is perfect! Good job lady! I don't think anyone could express our needs and concerns any better than you did in this letter. If I think of anything else, I will let you know, but, this is so good! I and we are all so proud of you!
Love, Jeanne ♥0 -
new flowerNew Flower said:Calleen
Look very good. One comment - healthy snacks. In my Chemo units they have snacks chips, soda, crackers... Opposite to what dietitians have recommended. I am suggesting at least fruits like bananas or apples, granola bars, etc.
Great comment.. I will fix that!! your right we do need to eat better.. even though I'm guilty of being a junk food junkie...0 -
SunraeSunrae said:Fantastic
Calleen, you have very thoroughly captured our thoughts, concerns, needs, feelings and more. You are a great spokesperson for all of us and we thank you for all your efforts on our behalf. Hopefully the advisory board will take all this to heart. It will make our journey a little better knowing people care and are there for us when we need them the most. Thank you again for your care and love. Waiting to hear how it goes!
Thanks for the support!! I just want to make sure it's all about us!!!0 -
JeanneJeanne D said:Calleen ♥
♥
I think this is perfect! Good job lady! I don't think anyone could express our needs and concerns any better than you did in this letter. If I think of anything else, I will let you know, but, this is so good! I and we are all so proud of you!
Love, Jeanne ♥
Ahh Thanks so much!! I know your going through so much right now!! I hope so much to make a difference in someones life in a positive way..0 -
Calleen
This is great!
I don't have a lot to add since I'm still in the beginning stages, but I think you've captured a lot of what I've read on these boards.
The only thing I might add (maybe under Tests) is to be sensitive to how difficult the waiting is. I know others have posted about having to call for results instead of actually hearing back from their doctor, and although I haven't had that problem for me the whole process is just going so frustratingly slowly. My lumpectomy was a month ago tomorrow, and I still don't know whether they're recommending chemo. My whole life is on hold and the holidays are coming up.
Thanks so much for doing this!!0 -
GREAT!cindycflynn said:Calleen
This is great!
I don't have a lot to add since I'm still in the beginning stages, but I think you've captured a lot of what I've read on these boards.
The only thing I might add (maybe under Tests) is to be sensitive to how difficult the waiting is. I know others have posted about having to call for results instead of actually hearing back from their doctor, and although I haven't had that problem for me the whole process is just going so frustratingly slowly. My lumpectomy was a month ago tomorrow, and I still don't know whether they're recommending chemo. My whole life is on hold and the holidays are coming up.
Thanks so much for doing this!!
Wonderful letter! Thanks for doing this for all of us!
-Jenny0 -
Calleen, excellent job.
I think you've covered the things that have been suggested by our sisters. I am still in treatment currently doing my rads, so if I think of anything else, I'll let you know. Thanks for taking your time and doing this. The way I look at it, even if it doesn't help each of us, just kowing that perhaps a future sister in pink will be helped, is satisfaction to me.0 -
Yescindycflynn said:Calleen
This is great!
I don't have a lot to add since I'm still in the beginning stages, but I think you've captured a lot of what I've read on these boards.
The only thing I might add (maybe under Tests) is to be sensitive to how difficult the waiting is. I know others have posted about having to call for results instead of actually hearing back from their doctor, and although I haven't had that problem for me the whole process is just going so frustratingly slowly. My lumpectomy was a month ago tomorrow, and I still don't know whether they're recommending chemo. My whole life is on hold and the holidays are coming up.
Thanks so much for doing this!!
I was just thinking that I forgot that part.. Yes the waiting is horrendous!!!0 -
my turn nowMyTurnNow said:Calleen, excellent job.
I think you've covered the things that have been suggested by our sisters. I am still in treatment currently doing my rads, so if I think of anything else, I'll let you know. Thanks for taking your time and doing this. The way I look at it, even if it doesn't help each of us, just kowing that perhaps a future sister in pink will be helped, is satisfaction to me.
Thank you so much.. When I was first DX. I felt a need to want to give back. and God listened to my prayers and now I'm going to do just that..0 -
CalleenCalleen said:my turn now
Thank you so much.. When I was first DX. I felt a need to want to give back. and God listened to my prayers and now I'm going to do just that..
Your summary is just fantastic. But please ask them to recognise chemo-Brain before we all rush out to join the Altzheimers Society. NOBODY mentioned it to me and I thought I was going insane.. well maybe I was.. but it would have been nice to have this explained as a possible side effect (Just like fingernails falling out) before they happened and left me scared witless.
Thank you for all your hard work..
You are doing a great job for us ALL...
Hugs Jxxxxxxxxxxxx0 -
YEStasha_111 said:Calleen
Your summary is just fantastic. But please ask them to recognise chemo-Brain before we all rush out to join the Altzheimers Society. NOBODY mentioned it to me and I thought I was going insane.. well maybe I was.. but it would have been nice to have this explained as a possible side effect (Just like fingernails falling out) before they happened and left me scared witless.
Thank you for all your hard work..
You are doing a great job for us ALL...
Hugs Jxxxxxxxxxxxx
I will certinly add that to my list right now..... Thanks for adding your imput Tasha!!!0 -
Great Job!Calleen said:my turn now
Thank you so much.. When I was first DX. I felt a need to want to give back. and God listened to my prayers and now I'm going to do just that..
If we all are treated as you suggest, you will have made a HUGE gift to all bc survivors!
Thanks Calleen, Hugs, jackie0 -
GREAT list!!!!
How about one more suggestion: Give us the gift of a bit of normal....
My story: I was miserably waiting to see my onc in a common waiting area. I felt awful, already having done treatment for colon cancer, and now was starting chemo for the breast cancer. I sat with my head bowed. I looked up to see the friendly face of the center patient coordinator, who, instead of asking for the details, started chatting about a trip to Vietnam she had just returned from...
I remember it so well, and later thanked her for giving me a small bit of normal along a very, very abnormal path!
Hugs, Kathi0 -
"One size" does not fit all.
My first thought is while hugs are certainly fantastic and healing BUT not all of us want random hugs from just 'everybody' we run into. To me, a hug is very personal and private with special meaning (from/to those I love, be they family or special 'others'). I have no problem giving hugs to those who don't fall into that description IF they appear to want/need a hug. Just don't assume that I want and need a hug just because we are together. Learn to 'read' people.
Do not talk down to me or treat my like I'm senile or a child. My body may have some glitches in but my brain is still functioning quite well (as far as it ever has LOL). Be upbeat - not oh so sad and 1/2 whiney when talking with me (or my family when we are together). I'm fighting hard and the last thing thing I want is a defeatist/hopeless attitude from anyone.
Do not assume that because I'm at my chemo/dr. appts. by myself that I'm alone/lonely and need to be 'entertained/taken care of' - it's my choice to be there alone. Hubby or Son (or several different friends) would be there but I see no reason - I actually like my private time.
The list IS very good but we are unique and all do not fit into a round hole, a square hole or anything else. Hope I haven't offended any but this is how I feel.
Susan0 -
Calleen....
Wow! I can tell you put alot of time and effort into this! Thank you. I think it is a wonderful, thought out piece of work that is going to make a difference in a lot of lives. I imagine it may take some time to implement some of this, but I think they will see the impact it will have if done. Great job! Go get them tomorrow and keep us posted on what they said! We will be anxious to hear! ♥Pammy0 -
Rague- I agree!!Rague said:"One size" does not fit all.
My first thought is while hugs are certainly fantastic and healing BUT not all of us want random hugs from just 'everybody' we run into. To me, a hug is very personal and private with special meaning (from/to those I love, be they family or special 'others'). I have no problem giving hugs to those who don't fall into that description IF they appear to want/need a hug. Just don't assume that I want and need a hug just because we are together. Learn to 'read' people.
Do not talk down to me or treat my like I'm senile or a child. My body may have some glitches in but my brain is still functioning quite well (as far as it ever has LOL). Be upbeat - not oh so sad and 1/2 whiney when talking with me (or my family when we are together). I'm fighting hard and the last thing thing I want is a defeatist/hopeless attitude from anyone.
Do not assume that because I'm at my chemo/dr. appts. by myself that I'm alone/lonely and need to be 'entertained/taken care of' - it's my choice to be there alone. Hubby or Son (or several different friends) would be there but I see no reason - I actually like my private time.
The list IS very good but we are unique and all do not fit into a round hole, a square hole or anything else. Hope I haven't offended any but this is how I feel.
Susan
I totally agree with your thoughts on not wanting the sadness and defeatist attitude from people. That was one of the first things I said when I found out about my Breast Cancer. I didn't want anyone feeling sorry for me, and if they were going to come around me and bawl, I didn't want them around. It's hard enough trying to accept what's going on with you, but to have someone coming to you and acting like you were just handed a death sentence is a bit too much.
Calleen, thank you for what you are doing! I am new to the network, and it's good to know there are people like you speaking up for all of us!0 -
Well said, Thank you.Akiss4me said:Calleen....
Wow! I can tell you put alot of time and effort into this! Thank you. I think it is a wonderful, thought out piece of work that is going to make a difference in a lot of lives. I imagine it may take some time to implement some of this, but I think they will see the impact it will have if done. Great job! Go get them tomorrow and keep us posted on what they said! We will be anxious to hear! ♥Pammy
Well said, Thank you.0 -
Good job
My one suggestion is under tests to include "thoroughly explain all test results." My docs have been great but they do tend to hit the high points of path reports etc. I want to know what the words mean and what it means all together without having to ask each thing. Maybe this is a duplicate of the first section of being patient and answering all questions.
Thanks for doing this.0
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