Support system...what type do you have?

[Chelee]

I am curious as to how many of you have some type of support set-up since you were DX? Maybe family, friends, bc support group you go to, phone support like the Outreach To Recovery, or possible all of those mentioned?

What have you found to be your "best" form or support other then this board...because we ALL know this board is a great source of support.

For those that have a GOOD support system, what have you found to be your BEST source of support?

Also, has any of you had people disappear since you were DX? People with excuses for NOT calling or coming by because they DIDN'T want to bother you or wake you up. (That type of thing?)

Chelee

[Becky]

Chelee


My best source of support is this board, after my husband, sisters, mom and 2 close friends. However, I can say whatever I want here and everyone understands. I do not even go to a once a month local support group any longer because it is too much "caring and sharing" and I am more inclined for the scientific information provided on this board. Plus, here at home, I am the only Her2+ gal in the group. Nobody understands what Her2 is etc. Although, I will say we have 2 triple negatives in the group and they are more attuned than the others.

With this group, someone is always there. There is a member who fits any need you have - need ovaries removed - someone's been there. Prophalactic mastectomy with or without reconstruction - someone there too. And the information on nutrition, diet etc. All the women here are amazing.

As far as people not being there after diagnosis, I have a small core of friends and not very many neighbors so that did not happen to me. But I have heard that people disappear after a cancer diagnosis - like its catchy or something.

Keep smiling

Becky

[chrisy]

Chelee, Great questions!
I've been blessed with a great support network and "get" different things from each type of support so it is difficult to say which is best. This is really long, because I continue to be awed by the depth of support I received.

Sources of support:
1. My family. My husband who loves me dearly and supports me best by doing just that, and making me laugh. My sister and niece, who live in Chicago (way too far away!). These people are my reason for living.
2. Friends who maintained a continuous flow of cards, well wishes, emails, and social contact during my treatment. Somehow when I was at my lowest, someone would out of the blue send me a note of encouragement.
3. Co-workers and business associates. From my staff to the President and Owner of the company, these people were INCREDIBLE! They set up "meal service" and transportation to/from treatments, prayed for me, allowed me to work from home when I needed to and rose the the challenge of keeping things going while I was functioning at (ever so slightly! LOL!) less than 100%. I feel I found true love in the workplace. I know that not everybody gets support from their workplace so I know how lucky I am.
4. The local "cancer support community". I met a lot of people when I had my initial diagnosis and was a "peer navigator" through a local womens cancer support center. When I found out the cancer had recurred, these people were the first I called, because I knew they understood.
5. Support groups - this Her2support group is the best online support group I found. The knowledge and information as well as "support" is incredible. I also went to some local support groups which were good in the sense that I could talk about things that were difficult to discuss with family/friends.

Best source of support:
Sounds a bit irreverent to say God, but since I view all of the above as little miracles... For info, this site. For practical support, my work associates. For love, my family.

Did anybody "disappear":
I expected this when I got the diagnosis of mets, because people just can't deal with that. This may yet happen in the future. I did not have anyone "leave", and in fact was surprised that some casual friends became closer friends. I did have some instances of people saying incredibly insensitive and stupid things! My favorite was "I was trying to put myself in your shoes and think of how I would feel. I always wanted to die first, too". I just chalk those up to people don't know what to say - and remind myself that they are coming from a place of love despite how it comes out!

Gotta go praise Him for all my blessings...

Thanks Chelee, for opening this topic.
Chris

[anne]

I have something to say about support. My mom was dx with BC then had a stroke 3 months ago. That's 2 big blows in a short span of time, and I remember just sitting in the hospital "pep talking" to her for many hours straight until she saw she could make progress. God brought my parents to live close to me so that I could help my mom though all this. I guess it's my JoB!

Hugs,
Anne

[koolbreeze]

Chelee, I have a few friends, no spouse or roommate, no family. My friends gave me lots of good support while I was on chemo. I appreciate this board, it is helpful. I did not go to any support groups etc. I am however, now, getting involved with ACS.

As far as people who dropped out of sight, I was dating a guy, and he came to the hospital for my first two surgeries. The third surgery he showed up unexpected in the waiting room prior to surgery and did not recognize me since I had no hair (I had shaved it very short in preparation for chemo). We visited before I went in to surgery and I never heard from him again. He did not contact me at all after that. Guess he could not handle it.

I am thankful for my friends. I could not have gotten through it all without them.

[lu ann]

I have probably gotten the most support from the people on this board. Although we all come from different walks of life, we have an understanding of this disease that others not in our battle havn't a clue what we are really feeling.

I have a group of girlfriends, who I have been friends with for 25 to 45 years, who have been the glue that keeps my social life together. We meet with or without our husbands and have a total blast with each other. We have supported each others families births, illnesses and deaths. They treat me like I am one of the girls and not an invalid. We lost one of our friends to conjestive heart failure brought on from drugs, alcohol and ciggarretes. She was an amazing friend and comic. We still laugh at her stories. I know if I die before any of them, they will also keep me alive with my stories.

My husband and children are pretty much in denial. I have tried to talk to my oldest about past hurts and forgiveness. She has already put me on that pedistal reserved for saints and believes I am the best mom in the world in spite of my many shortcomings. I want to give them the opportunity to tell me how they feel, but they are not ready to go there. My youngest, daughter seems to be the only one who feels comfortable sharing her feelings about my illness and possible early death.

My Mother in-law has been my rock. She has been the one person in my entire life that I can go to and she denies me nothing. My own Mother died a day after our first Wedding Anniversary and my Mother in-law has been there for me ever since. She's 87 years old and I can't bare the thought of her dieing before me. She is loved by everyone.

I have the support of my church family and other church families who continue to pray for me.

Two years ago I sent a letter to several friends, neighbors, and family members, to let them know about my disease. This gave them a chance to digest the news before facing me. The responce was varied. Most of them have supported me while others can't deal with it. I saw the same thing happen with my Mother when she was on her death bed. Her best neighbor friend would not cross the street to see her, which hurt her very much. I have felt that sting, but my support group has made up for it many times over.

The person that has disappointed me the most has been my sister. I know she loves me and she has been very generous materialy with us, but she still doesn't give me the time I need to be with her. She is under a great deal of stess with her job and has many responsibilities. Both of our parents are dead so we only have each other. I believe I remind her too much of our mother and it just hurts her too much to see me.

This was a good idea Chelee. I hope your world will resume some kind of normalsy and you can get back to enjoying your life. You have been through alot and don't deserve the treatment you have been getting from your so called hmo medical support. They took an oath and should be ashamed at how they have treated you and many others in the same boat.

Love and Blessings to All
Lu Ann

[Carina]

Chelee,

I am in the foreign service and was posted to Jamaica when I received by initial DX. My sisters flew to New York to be with me for further tests and the surgery. My ex-husband flew to Jamaica to take care of the kids until the school term ended and they could join me in NYC. He continues to be an incredible source of support and humour (gotta get the laughs when you can!!) throughout my treatment.

I originally wanted to return to Jamaica to do the chemo to give my girls the chance to complete the school year and allow me to continue to work. That did not work out as the meds could not all be obtained in time. I had to return to Canada and chose to return to where my family lives. This was the best decision I ever made. I don't know what I would have done without the support of my sisters, ex-husband and the incredible compassionate support I received from my employer. Of course a summary of my support network could not be complete without mentioning my two daughters (ages 6 and 9). They cuddle up and read to me when I can't get out of bed due to bone and muscle pain and by their unstinting love, never fail to remind me why I have to fight to survive to the very best of my ability.

Though the DX has turned my world upside-down (I have no idea what happened to most of 2006 - it has been a blur!), I have also been given the gift of spending more time with my family and learning to accept help when offered. For me this has been one of the hardest yet worthwhile lessons. I have recently joined Gilda's Club, a cancer support group in the U.S. and Canada. It is early stages and I am not sure if I am getting any real benefit from it. My girls however enjoy Noogieland but a recent death of a Mom of one of their Noogieland friends has brought fears about my survival back for them. We're working through this...

Some people disappeared and some have said some incredibly inane or insensitive things. However, I think it is because so many have been touched by BC (wives, sisters, mothers, daughter, friends, the list goes on) and the apparent randomness and frequency of the disease scares people. Fear can really cloud judgement. I accept and am grateful for those who overcome their fear and reach out no matter at what level.

I am still working on assessing my need for support and trying to take people up on offers of help as they are needed. For example, my nieces are doing some research on new drugs for me, my sister is helping me find a new onc and I am happily using the catering service my colleagues have purchased for me. There are some things that I know I have to do alone, but increasingly I am trying to find ways to delegate some tasks so that I can concentrate on what is most urgent/important. Once I started looking for help, it sometimes came from unexpected sources. I continue to be overwhelmed by the generosity of many BC survivors. Their honesty, compassion and understanding allows discussion of fears/frustrations that sometimes are difficult to talk to non-survivors about.

A last comment, I am looking at doing some things that I love that have absolutely nothing to do with cancer. I have joined an art studio group (just art not wellness therapy) and I am looking forward to reconnecting to something I have enjoyed but not done in years. For me, it is important to do something that does not have cancer as a focus. Not sure if this will have meaning for you, but it makes me feel like eventually there will be a day when I can reclaim the other parts of me that have been temporarily put on hold.

[juanita]

I think I would say this was my favorite place for support because I can say anything I want that my family or friends don't want to talk about, like being afraid. But I do have an extended support group of family, friends and people from church.

[Jean]

Dear Chelee,
It comes in all shapes and sizes!

I must say that my husband and son have been my strongest supporters.
There are days (and we have all had them) when we are not so great to be with. You all know them - the days you crawl into bed and just cry (those early dx. days) when you are half out of your mind with fear. Well my husband and son were my strength and put up with much from me. I was never ever satisfied with the dr. my instincts kept telling me - no, not the answer. After three other onc. trips to three major hospitals my husband and son hung in there with me. Even though I knew my husband was getting concerned that I was not accepting my dx. My sister whom I adore and we "were" very close through all our lives was getting annoyed with me. Then when I flew out to see Dr. S. my husband supported me 2,000%

I have two wonderful neighbors who have been there for me.
I must admit I am heart broken that my niece who is like a daughter to me
has never ever called me once during my chemo treatments. She is old enough to understand being 38....I am shocked "nothing" so it does happen and it does break your heart. I have a friend from back in college who is my sons Gods Mother....I am a bit surprised with her behavior she flew into the NY area and did not even call me! Strange I think - we are close but her response was "She did not want to bother me since I am having chemo"
I was heart broken and tried to explain this to her, which lead me no where.

This site has been my everything - information as Becky said - which was key to my survivel..I chose not to tell my co-workers about my dx. It would ruin my business if word got out - it is just the nature of my competitive business.
That has been difficult and hard for there are some I know would have been
supportive.

I have a dear friend who lives in town who has been a wonderful support
for me and has always offered to drive me if needed etc. But my husband and son have carried the main load.

I am so blessed with them and thank God each day for both.
I have another sister who calls me from Florida but what can she do
from Florida? She calls 2 times per week to check up she had promised to come up and visit this summer but has not done so and that was a bit
disappointing. But I have learned that those who can deal with it
are few. My greatest surprise was my two neighbors who have been
just wonderful.

So often times what we expected from some - we receive from others.
I do not belong to a group - I have made a friend on Why Me? She has been
wonderful to chat with on the inter-net and phone calls here and there.
But for the most part - this site is my strength for information and everything else....

Hope this helps you Chelee - I know it has been a difficult time for you
but as you have learned on this site there are many wonderful people
who are always there - no excuses at any time. We are blessed to have each other.

Cancer can be a disappointing dx. esp. with finding that those you cherished can disappoint you - but I do blieve they just do not fully understand.
They do not walk in our shoes. I know for myself I have changed since my dx. I was always aware and had great compassion - but now I have action under my feet. As soon as I am complete with my chemo I plan on volunteering at my cancer center a day a week giving out small meals to those patients that are at the center with treatments. It is a large center treating often times 200-300 patients a day. There is one man now who goes around giving out small meals, treats, etc. and it is obvious they could use additional help. Well I am for that along with a positive attitude, this will be my way of helping others with this hatefull disease and who knows better about their canoe,
since I have a paddle too!

Sending good wishes to all.
Jean

[Rendi69CA]

I don't have a great support group at all. I know they are afraid. I had to end a 4 year relationship because I will not stress out behind b.s. any more. My daughther called the police on me last night because I took her car keys and cell phone away from her. I gave her those items to help me to my doctors appointment. I taking taxis and buses for my appointment or I have to wait around the doctor office for someone pick me up. I just need her for 1 hour a week. When I ask family and friends to take me, I have to wait the day of to see if they can take me. I hate when they say, " Call me if you need help." When I call they can't. I know who is my friend now.

[MCS]

Great question!


My husband has been supportive but sometimes too positive- is that possible, can you understand?

I have two daughters 21 and 18 that feel bad for me when I am crying, but separate themselves otherwise- I don't know sometimes how they really think of this. They got a beag bolt when they saw my father buried recently but they still go on. I don't want them to feel down but they also sort of ignore it ?

NOW, ALL OF YOU. HAVE BEEN MY SALVATION, TEARS! BECAUSE I'M FREE TO SAY ANYTHING AND YOU WILL KNOW, NOT JUST UNDERSTAND. The support groups don't understand this herceptin, family are uneducated about it and friends want to run away- maybe its' catchy you know, cancer that is.

YOU ALSO PROVIDE A LOT OF INFORMATION I WOULD NOT HAVE OTHER WISE TO TALK TO THE ONC.




THANK YOU

mcs ( Maria)

[Jackie]

This is a super question.

I have had incredible support. My greatest support has been God & my husband. Without them I could not have made it. My church family and other family have been there all the way. I have a friend who I teach school with who was dx. about a month after me. We have been support for each other. We have done Herceptin together for about 8 months. This has helped a lot (we drive about 45 mins for treatment). My principal and other teachers and staff I work with have been great. They in fact had a surprise luncheon one day to honor my friend & me. They all had pink ribbons on. This meant an awful lot. There have been a lot of friends there for me also. This board has been great, but I didn't find it until after all of my chemo, and I was doing just Herceptin. I have learned a lot from all of you and that has helped me be support for others going through this dreadful disease. Thanks to all of you that so openly share.

[Kimberly Lewis]

Hi Chelee, You have really been through it lately! Sorry that it has been so hard. This was a good question - I have been pondering it lately myself as I got into a time when I felt I have NO support at all. My freinds can't relate, my husband is so "positive" that we can't be honest, my family doesn't want to even think that this could kill me. I would love for just one person who was in this same boat to talk to face to face. Not just to bitch but to have someone who would really understand and not be afraid to talk! sigh... wish there was a support group here! Glad though that there is one on this site!!! Thanks everyone...

[callen03]

My best support is from my faith in God and my sunday school class. Every week, we talk about my struggles, my praises, etc.

I am very open with everyone about my illness, so I get a lot of support from coworkers and friends. No one has backed off from me, but I have continued to keep a very active life.

I have been going through chemo for over six months. I have Stage IV Breast Cancer and have just been told I am in remission. I am going to go through chemo for a few months, and continue on Herceptin after that. I honestly believe the reason I am doing so well is because of all the prayers that have been made on my behalf.

[lu ann]

This was a great question for all of us to ponder. It must also be a positive outlet for you, Chelee, to get your mind on to something that will help you throughout this journey. I can see you being one of those people who will be an advocate for those, like yourself, battling the insurance system. There has to be something done about the unfairness. I have been fortunate to have a decent plan. But, if I live to see retirement years my husband is going to have to work until he is 69, as I won't be able to get medicare until I'm 65. We would never be able to afford private insurance for me. Blessings, Lu Ann.

[tousled1]

This sure is a great question. I went on disability retirement in July 2005 and moved to Georgia to live with my daughter and her family (son-in-law and grandson). As for support -- my greatest support is from this board. Here you can say anything you want, either good or bad, and someone will understand or have been at that place. Also this board offers a wealth of important information and offers great support. I'm disappointed in my daughter as she really is not supportive. She did take me to all my chemo sessions but now I take myself to radiation and my Herceptn infusions. She never wants to talk about my condition and what it means. I believe that she is still in denial. I have raised my children on my own since they were very young and always had to be strong and positive. I have no husband or boyfriend. My son-in-law talks to me alot and I believe he relays the information to my daughter. I have another daughter who lives in Chicago and she calls every week and we talk. My sisters and brothers call about once a week to check on me. My friends call but not as often and the friends I've made since moving here are a great support system for me. My grandson is the light of my life -- he gives me a reason to live. When I need a hug he is more than happy to oblige. He just turned 6 and I hope I live to see him grow up. This is a very hard battle to fight and sometimes I don't know if I'll be able to make it over the next hill. Then I think about my grandson and race over the next hill. The hardest part is that everyone keeps saying "Kate you're so strong and positive you'll beat this." Sometimes I just want to scream back and say no I'm not strong I'm scared to death.

[Sheila]

Support...it comes in many forms...some think they are supporting you but they are really in denial about the whole situation.
My parents are there for support, but both are elderly, I hate to burden them.
My husband thinks everything will be fine...somewhat in a denial mode.
My children I believe (and they are grown) what I have is the same as having a bad cold! Maybe they don't want to accept. Denial also?????
My friends give me the pep talks...you are doing so well, you dont' look sick!...they are just trying to make the situation comfortable I guess.
Brothers and Sisters...there is a split here...I have a brother and sister that call all the time, show some interest, and 2 that I never hear from. Distance sometimes takes away fear.
BC Support Groups HER2 and Hooter Pals are there for the good and the bad! At least at this place, others know what its like! I am allowed to be myself, and get that boost I need to continue to fight!
Myself I rely on myself to go to my treatments alone, Dr appts, scans...it is kind of an independence thing and it gives me time to let my thoughts wander and feel that I am fighting for myself...which in turn makes me stronger for my family.
God and Faith have been a real comfort....he never gives us more than we can handle....although sometimes I feel he is pushing the limit! I have found that prayer heals the mind to give us strength to get through this.

[sarah]

Dear Chelee,
great question. I think from reading the posts you have several sisters out there who are in particular need of the same thing as you and who feel under supported so prehaps you can help each other through this trial, one in southern california - so i'm sure you could chat together.
We have all been surprised as to who's been there for us and who hasn't. my brother who loves me very much just went silent until I paraphrased mark twain and said "the rumors of my death have been exaggerated!" and that indeed I was still very much alive!!! that got a quick phone call!!! My husband who always hated visiting sick friends in hospital has been terrific, changing drains and doing all kinds of stuff as well as being a great support group although prehaps a little blind to the bad possibilities of cancer! I feel I do have a good support system, my best is probably a fellow traveler, not HER2+ but she is very knowlegeable and intelligent and has become a great friend. I think the cancer support groups are great particularly for anyone with no really solid support because you definitely need people to talk to who have traveled or are traveling your road and that is why this site is so wonderful. In a support group you might just make a terrific, life long friend.
Dear Rendi and Kimberly, chelee and others,
I really feel finding a support group is vital to your well-being. This site is great but you also need people you can email directly or telephone. I am not the most knowlegeable person by far about cancer on this site but you are certainly welcome to PM me. Of course I'm in europe so not on the same time frame and some days don't check my email but I hate to think that there is anyone out there feeling "abandoned" or "alone" I think as women we have an advantage - women tend to have a circle of girl friends who are our support beyond our families which sometimes can't cope with our illness and our possible death.
I think Carina had also great advice in suggesting joining a group outside of cancer and getting involved in that - painting, bridge or whatever. I belong to an unofficial dog walking group! and books have saved my mental health!!! and chocolate!!
I wish you all luck and hope you all find a good strong positive support group. I know I couldn't make it without mine which includes this group.
big hug, you are far from alone,
sarah
PS I hope my suggestions of where to find some support groups works out for you.

[Peggy]

I have found an amazingly supportive world out there since my diagnosis. My family has been there for whatever I need. My husband has gone to every appointment, chemo, test...to be there for me. My son offered to relocate his family to be here for me (I declined), my daugher calls often and drives the two hours to visit frequently. My other son flew in from Japan to be with me during surgery. My two sisters live in distant states, but call often and arranged a "sister" trip this summer.

My coworkers are very supportive also...My boss is dealing with leukemia so we can really talk and know when it is "too much help."..

My friends are there for me, too. I haven't gone to a support group, but they have certainly reached out and invited me.

The Cancer Center staff is also a big support. They ask about my children, my grandchildren, and my dogs..The dogs have also been a big support. How can you be down when a dog is holding his toy, wagging his tail, and just wanting to play.

People I don't even know at work go out of their way to introduce themselves and let me know they support me....it has been truly amazing.

God and prayer are a constant and continuing presence of love and support.

I may have breast cancer with all the "yucky" and frightening experiences that go with that, but I have been truly blessed this last year. It has been absolutely overwhelming and I am humbled by the generosity and kindness of others...including those on this board.

[jhandley]

Hi
I have had a lot of support from my parents (age 76) who live 4 hours drive away...and some support from my sister who lives in the same street but not a lot and not the type of support I need. She is not very sympathetic and thinks since I look well I am well. I have 2 brothers who never call me which I found very disappointing and a sister who lives in london who is quite good. There is a good church community here who offer support and I have a cousin and Aunt/Uncle who visit occasionally. Friends mostly dont live here (I moved here after my dx) but 2 close ones are a great support. I am in the Army Reserve and they have been good about allowing me to continue to work. Teaching colleagues have generally been great with two exceptions who have been horrid.
I go to a BC support group once a month for morning tea which is good and I find this website great.
The other support I get is from the nurses and doctors at St Vincents Hospital in Melbourne. I travel 3.5 hours drive because they are so good..I tried having herceptin at the local hospital but due to my dificult veins and the isolation I changed back to Melbourne.
Two local doctors one of whom is a friend are good support and will listen to all my research and provide a sounding board and I get great support from a doctor friend in Melbourne whose advice I take regarding my treatment.

And of course my daughter aged 9 is the most support of all and is my motivation to go that extra mile...

So really I have quite a lot.

Thanks for asking.
Jackie