Cancer Survivors Network

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...

♥
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..

Thanks for the support!! I just want to make sure it's all about us!!!

Wonderful letter! Thanks for doing this for all of us!
-Jenny

I was just thinking that I forgot that part.. Yes the waiting is horrendous!!!

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 Jxxxxxxxxxxxx

I will certinly add that to my list right now..... Thanks for adding your imput Tasha!!!

If we all are treated as you suggest, you will have made a HUGE gift to all bc survivors!
Thanks Calleen, Hugs, jackie

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!

Well said, Thank you.

Additional suggestion.
Everyone BC patient needs orientation with Clinical Social worker to be inform about disability benefits, including short term, long term, state disability, and Social Security Disability Insurance, Family Medical Leave Acts. Many of us have no idea about sick leave options and have made mistakes in disability benefits area. Social protection is a very important issue.
Thanks again for doing it.

2nd draft.....

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. Our lives as we knew it will never be the same again.
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 for one am honored to be chosen to represent my Fellow Warriors. From personal experience I know our Future Sisters in Pink 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. Including someone to inform us about disability benefits, short term, long term, FMLA, Social Security disability insurance.
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- Give patients a folder with information about their 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, alternative treatments, dieticians, list of counselors, etc….
9- HUGS… If we are the hugging type.
10- Don’t leave us in the waiting room crying. This happened to me. I felt very exposed and really wanted to go somewhere private.
11- Please don’t say “OH your one of those patients” I am unique. You do not know what I’ve been through and to hear something like that makes me feel belittled. Unless you’ve walked in the shoes of a cancer patient you can’t know what’s going on... on the inside.

Chemo:

1- Explain every step. What the medicine is and all possible side effects, including Chemo-brain, fingernails falling out and that we are not really going crazy.
2- Have a list for what to take for possible side effects.
3- Have a list of foods to avoid and foods which may be tolerated more easily.
4- Suggest that we go to the dentist before our first treatment for through cleaning.
5- Have volunteers available to sit with those who have no one to be there for them. Some patients may embrace the solitude but others may welcome a friendly chat to pass the time.
6- Toasty warm blankets, pillows, healthy snacks, movies, cards, puzzles, books.
7- Little gifts for milestones met.
8- Free emila cream and tagaderms to put on ports to numb before we get there.
9- Offer meals for the guest with patient.
10- HUGS… If we are the hugging type…
11- From 1st visit to last remember us. And please don’t treat us like we are just a number.
12- Make a calendar with dates of treatment.
13- Offer prayer
14- Celebrate with us on our last visit!!!

Radiation:

1- Play music the patient likes
2- Toasty warm blankets.
3- One patient told me the rad team embroidered her name on a blanket and gave it to her
4- Offer healthy refreshments
5- Offer prayer
6- Let loved ones sit outside room
7- HUGS.. If we are the hugging type
8- One patient 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 patient had combo of aquaPhor and aloe
11- Celebrate with us on last visit!!

Tests

1- Be patient with us!!
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 much comfort it gave me!!!
4- All possible side effects from contrast material used. And always ask before hand if we have had any kind of allergic reaction to anything. Some Sisters have had some very scary reactions.
5- Don’t give us any unnecessary tests. Wait to see if chemo is going to be needed before the heart test etc.
6- PLEASE!!! Don’t make us wait for results. The waiting is the worst part!! My fellow Sisters say this is one of the worst areas. We have the tests then have to wait and wait till WE call for results. We just want to know ASAP good or bad!!!
7- Please explain all the details of the tests. Not just the high points. What do the words mean?

Calleen - You've done a wonderful thing for all of us. In fact I would like to make a copy of this and take it to the cancer center where I have my treatment, if that would be okay with you. I've experienced most of these things during my battle, including the hugs and prayers, but there are some suggestions that I think should be passed on. You are an inspiration to me, and I appreciate what you have done. When I first came on line with this survivor's group, you were one of the first people to help me with some problems I was having. Thank you for that and this. Connie

Caleen
I think these are excellent. The only one I would perhaps modify is #3. Complete honesty. Don't spare the details unless we tell you we can't handle them. I had a friend who wasn't told some details of her treatment and when she questioned them, she was told they felt she couldn't handle it. She said she should have been the one to decide what she could or could not handle. Other than that I think these are fantastic and I think you were the perfect choice for this. So proud of you. You are truly making a difference and paying it forward.
Stef

Thanks for putting this information together.

May I add one more thing?

For Doctors:
In addition to remembering my name, when I have my appt., please BE PREPARED FOR OFFICE VISITS. When I had my surgical follow up appt, the surgeon hadn't reviewed the pathology report. Long story short, she is my FORMER surgeon!!

Please ask to review the potential side effects of all of our treatments and then offer the appropriate testing to establish our baseline status, ie stress echo for cardiac function.... needed for both radiation and chemo.
Maybe I am in the minority but I was horrified by Susan Loves book. I had lymph node involvement and as I read her book most of the survivors were lymph node negative. At the time I was desperate to know of long term survivors and to have so few in her book was very disturbing to me. I had to throw the book out!!!
So I guess this is just another way of saying we all experience breast cancer differently and what may be best for one person is not for another so treat us with respect and as individuals.........and what is good for us today may not be tomorrow and that is ok!
Thank you for your words and spirit.

Thanks soooooo very much for all the imput!!! I'm so excited to present this to the hospital staff today!! It's truly a combined effort from all of you!! and yes please print copy and distribute to your own Doctors. You never know maybe this list will make a difference. I'm Praying that it does!!

God Bless all of you!!!

Calleen

_________________________________________________________________________________________

The Voice of the Cancer 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. Our lives as we knew it will never be the same again.
I have gathered info from not only my experiences but from my Sisters in pink from all across the US and Canada. This is our voice and I for one am honored to be chosen to represent my Fellow Warriors. From personal experience I know our Future Sisters in Pink have a tough road ahead and anything I can do to make their journey more comforting will make my Heart and Journey complete.

Hospital Staff/ Doctors:

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 tell you 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. Including someone to inform us about disability benefits, short term, long term, FMLA, Social Security disability insurance.
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- Give patients a folder with information about their particular cancer and suggested reading material ie. The Breast Book by Dr. Susan Love. Different drugs and side effects, local and online support groups , suggested web sites especially the American Cancer Society, when you should call the doctor, alternative treatments, dieticians, list of counselors, etc….
9- HUGS… If we look like we could use one.
10- Don’t leave us in the waiting room crying. This happened to me. I felt very exposed and really wanted to go somewhere private.
11- Please don’t say “OH your one of those patients” I am unique. You do not know what I’ve been through and to hear something like that makes me feel belittled. Unless you’ve walked in the shoes of a cancer patient you can’t know what’s going on... on the inside.
12- Be prepared for our visits. Pre read our charts in advance so when you walk in you know what to tell us. When you just grab our file and walk in we feel like you’re not in it with us. We need to feel a connection and trust.
13- Please review potential side effects and offer appropriate testing to establish baseline status. ie. stress echo for both chemo and rads

Chemo:

1- Explain every step. What the medicine is and all possible side effects, including Chemo-brain, fingernails falling out and that we are not really going crazy.
2- Have a list for what to take for possible side effects.
3- Have a list of foods to avoid and foods which may be tolerated more easily.
4- Suggest that we go to the dentist before our first treatment for through cleaning.
5- Have volunteers available to sit with those who have no one to be there for them. Some patients may embrace the solitude but others may welcome a friendly chat to pass the time.
6- Toasty warm blankets, pillows, healthy snacks, movies, cards, puzzles, books.
7- Little gifts for milestones met.
8- Free emila cream and tagaderms to put on ports to numb before we get there.
9- Offer meals for the guest with patient.
10- HUGS… If we look like we could use one…
11- From 1st visit to last remember us. And please don’t treat us like we are just a number.
12- Make a calendar with dates of treatment.
13- Offer prayer
14- Celebrate with us on our last visit!!!

Radiation:

1- Play music the patient likes
2- Toasty warm blankets.
3- One patient told me the rad team embroidered her name on a blanket and gave it to her
4- Offer healthy refreshments
5- Offer prayer
6- Let loved ones sit outside room
7- HUGS.. If we are the hugging type
8- One patient 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 patient had combo of aquaPhor and aloe
11- Celebrate with us on last visit!!

Tests

1- Be patient with us!!
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 much comfort it gave me!!!
4- All possible side effects from contrast material used. And always ask before hand if we have had any kind of allergic reaction to anything. Some Sisters have had some very scary reactions.
5- Don’t give us any unnecessary tests. Wait to see if chemo is going to be needed before the heart test etc.
6- PLEASE!!! Don’t make us wait for results. The waiting is the worst part!! My fellow Sisters say this is one of the worst areas. We have the tests then have to wait and wait till WE call for results. We just want to know ASAP good or bad!!!
7- Please explain all the details of the tests. Not just the high points. What do the words mean?

What a comprehensive list you have come up with! Something for newbies and survivors to think about. I am especially grateful you put chemo-brain in. No one ever said anything about it to me before treatment. I found out after sitting home crying for days, finally calling my onc's nurse in a true and heartwrenching panic. The last thing I wanted to loose was my mind. I was a student, taking online courses for a BS degree. It became more and more difficult to complete even the simplest school tasks, and I forgot how to do things that were previously second nature - like writing a check, or how to pay a bill online. I was beginning to be surprised that when I would check this website I saw so little about it. Of course, I did online research, but unfortunately my short term memory has deterioated so much I can't tell you what I learned. I read as much as I can, but still can barely remember anything I read. I take someone with me every time I see the doctor, because I don't remember what he tells me. I have had to drop out of school and give up my dreams over this chemo-brain. I can take the nausea, I can take the fatigue, but if anyone had told me before hand I risk loosing the only thing in my life I found rewarding - my ability to learn and use the things I learn - I would have said "NO" to chemo. What a breach of trust I felt when my care-givers would say to me in surprise "You've never heard of chemo-brain??!!". My family doctor prescribed anti-depressants when I came to her. My onc only shrugs it off an says it will go away after chemo, even the nuerologist I saw said the same thing. But will it?! I cope the best I can - make all the lists, and tell family and friends they may have to put up with an overdose of "senior moments", repeat instructions given to me, and apologize for all the uhhhhs and ummmmms while I search for the word I am looking for. I joke about it - what else can you do? I can joke about my cold bald head, the port in my chest, and just about anything else about what is happening to me, and do it with a genuinely light heart. But when I am forced to make light of serious loss of cognitive ability, my heart sheds a tear every time.

Thanks again Calleen, for putting it on your list. And thanks for letting me vent and rave.

Calleen, your list is so comprehensive! You've put a lot of work into it. I just have a couple of corrections:

in point 7 in the Hospital/Staff/Doctors section--correct "brest" to "breast." In number 11, same section, change "your" to "you're" (You're one of those patients).

I would also add that staff in each group need to keep up with changes in other groups--I got told to be at the Diagnostic Center at 6 a.m. to put my chemo port in, but the Diagnostic Center doesn't open until 6:30 a.m.

I especially like your reminder to them to tell us in advance what is going to happen--everything! We were told that surgery would only take 2-3 hours. What they didn't tell us was that there were other things that would have to be done beforehand and afterward. We were at the hospital for 12 hours, not 2-3 hours, on the day I had my surgery.

You are putting so much energy into your advocacy--thank you!

Sandy