Not sure where this belongs...

scrappy_survivor

Having said that I hope it is ok here in this forum.

Recently I was given a fundraiser on my behalf. @ friends go together & hosted it since my dh has been off work as I was unable to run my business, take care of my 4 kids, & go through all my treatment. Anyway through this Avon came out & did some stuff at my fundraiser. I did a huge speech at my fundraiser it was about 10 minutes long. Man y really liked it. It covered many things but a large part of it was me thanking family & friends etc...

Avon has now asked me to come to their meeting at the end of March & speak. I have a good idea of what I want to say but I am still newly diagnosed & still going through treatment. So what I am asking is if you had to give a speech is there anything specific you would like to get out there?? Please keep in mind if you post it then I am probably going to use it so if you object to that then please don't post it. The idea behind this is to help others. Those who may not even think about breast cancer. So anyone have any ideas, thoughts, suggestions, I can add to what I already have?

Thanks in advance.

scrappy_survivor

Anyone????????

BFidelis

Wow, what would I say.  The first would be thank you (of course.)  From there, they always say speak from your experience and your heart.  Here's what I think are some of the "common" elements, no matter what your stage of disease or stage of journey.

1.  1 of 3 people will get cancer; 1 of 7 or 8 (depending who you read) will be dx'd with breast cancer.  MOST BC is NOT genetic (only 5 to 10%.)  And it doesn't look around for the most suitable host -- fat or thin, old and young, no children and multi-moms, etc.  Do NOT think you can avoid it; if it isn't you, it will be someone in your family.  WE ARE ALL IN THIS TOGETHER.

2.  Diagnosis is hard.  And it usually takes a while for complete dx and tx plan to 'come together.'  And everyone is different.  If you know someone who has been dx'd, be considerate of your comments.  If you don't know what to say, say so, but don't make glib "positive" statements and for sure, don't start reciting a litany of "bad outcomes" like, "my aunt had BC.  She was dead 2 months after diagnosis."

3.  Treatment is hard, but WE CAN DO IT.  We CAN'T do it alone.

4.  Blessings on those who provide REAL support -- trips to appointments, afternoons of running errands, that chicken casserole for the freezer, the ear at the other end of that phone to whom you can pour out your fear and anxiety with no judgment.

5.  It is never really "over" for us.  This is a major life-altering experience.  Don't expect us to be the same as we were.  We are changed.  There is no "getting over it."  We come to accept that; those who purport to care about us need to accept that as well.

6.  We want a cure.  Not just for US but for YOU.  Let's say it again, WE WANT A CURE.

7.  (back to the beginning) WE ARE ALL IN THIS TOGETHER.  Many small streams make a mighty river.

Dona Nobis Pacem,

Beth

crazy4carrots

Beth listed all the points I would have!  Just want to add that you might relate some of the things that surprised you about bc, such as 1. there's more than one type of bc; 2. tx depends on whether or not you're ER/PR/HER pos or neg.

I can't remember whether or not Avon raises funds for awareness or for research.  If the former, then I would emphasize that everyone is already very much "aware" of bc, so let's put all our efforts into researching ways to prevent or cure it.

All the best,

Linda

yellowrose

You might want to speak about one of the little mentioned, yet lifelong risk following treatment.  Lympedema.  Few doctors discuss it.  Few nurses are trained regarding how to do needle sticks and BPs in BC veterans.  There is NO national requirement for training for therapists who treat it.  A physical therapist is not the same as an LE therapist.  Check out the Speak Out site for more info.

Edited to add: http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

EWB

It would be nice to have something about stage 4 ladies. We are often overlooked, not being the picture of health and cure. Lots of talk about "chronic" disease/illness but not much support or understanding. Many feel forgotten, unsupported.

So glad you are getting an opportunity to speak out! Need more of that.  Best wishes on your speech and prayers for return to good health.

Elaine

scrappy_survivor

lots of good suggestions keep them coming. thanks ladies

EWB... what would you like said about stage IV specifically. Not being in your shoes I am not sure how it feels I can only imagine. Any details you want to share I will be glad to hear.....

tos

Get your mammograms.

Do you SBE's.

If they find something on your mammogram and tell you to come back in 6 months forget it.  Demand it be checked immediately right away.

There are several different types of breast cancers so when one hears of something say in the news or reads in a magazine that this wonderful new med or pill is going to make things much better the world does not realize it is usually just for er+ women.

Good luck to you and I agree, speak from you heart.  I recently gave a bit of a talk, my first, of course made notes, left them in the hotel but when the time came I had no trouble coming up with things to say and not near enough time.

You've been given a great opportunity!

Brendatrue

Offer hope and a reality check. So many people hear the "rosy, cheerful" stories about managing breast cancer/full-time motherhood/ full-time employment/volunteering and finding nirvana and/or "moving on with life" that there is no insight about, empathy with and tolerance for the persons (perhaps the majority?) who do not fit that wonderful little role model who has been honed to perfection by the media and others. Also, remind people that education builds empowerment and greater skill in making the choices that are right for you, those choices that might not be right for your sister, mother, friend, etc. And even though being an empowered consumer/ client typically involves a tremendous sense of responsibility--that some would rather confer on the doctors or other "authority figures"-- these are our bodies/lives/spirits at stake and we will intimately, ultimately experience the consequences--both the glorious and the painful--of the choices we make. And, perhaps, how cancer is experienced holistically as well--psychologically, spiritually, physically, relationally, in community. And, finally (for this post!), healing does not always mean cure, wholeness does not always mean being without fragility/vulnerability, and learning that the sense of control is often an illusion, typically stripped away by cancer, which can be both life affirming and life changing.

scrappy_survivor

Beth I used a couple of your ideas. Hope that is ok.

Other ladies thanks for all the ideas I used them as bet as I could hope you are happy with what I have done. Here is my speech. You are warned, it is LONG. lol But they gave me 1/2 an hour.

Hello everyone. Thank you for inviting me tonight. I am going to start the night off my telling you a little bit about myself. I am a 38 year old wife mom to 4. I run my won in-home daycare. I love to scrapbook. 5 months ago my world as I knew it was shattered. You see it was 5 months ago in October that I got the phone call telling me I have breast cancer.

My story does not begin in October though. So let me take you back to the very beginning. It begins back on August 1^st. You see this night was like any other summer night. I went to put my 8 month old daughter to sleep. I did this by nursing her. I had wanted to watch a show so I laid down in bed to nurse her. As I grasped my breast to put it in her mouth, I felt a lump. I sat straight up in bed like a bullet & felt for it again. Yes, I thought it really is there. By this time Kelseigh was crying not understanding why I had yet to start feeding her. So I fed her & put her to sleep. Then I came down & said to Terry do you feel this? Yeah he said so you have a breast infection. You know what to do. This was my 3^rd baby so he did not think of it as a big deal. I on the other hand did not feel it had the signs of a breast infection. So I called my lactation consultant who helped me when I had problems with nursing right after delivery. We discussed it and although she agreed it did not seem like an infection she told me all the things I needed to do. At the end of our call she said to me, Jodi if it does not go away see a Dr. The last mum I know this happened to passed away of breast cancer." I assured her I would not let it go. I too knew Aundrea's story as she was very good friends with one of my best friends. Tuesday was the earliest I could get in to the Dr. So Tuesday morning I headed straight over to the Dr. He agreed this was not a breast infection. Probably a fibroid he said but I am going to send you for an ultrasound to be sure. No point in doing a mammogram since I was breastfeeding. He gave me a form for the ultrasound it had 6 places I could call on it to get the ultrasound. I called all 6 took the earliest appointment at each of them & then called & cancelled all the appointments that I did not need. I wanted this done immediately. So on August 11^th I had a breast ultrasound. On August 15^th I saw the coverage Dr. As my Dr. Was away. He told me that my lump was 90% chance a fibroid. Therefore we could review it again in 6 months. I said nope uhn uhn no way no how. I want a biopsy immediately. I kept hearing you are too young. A breastfeeding mom, its surly not cancer. This would be a wasted procedure. But somehow in my heart of hearts I knew. So the biopsy was made for September 5^th. I asked will there be an issue since I am breastfeeding? Nope there won't. So off I go to get my biopsy. But wait.... you are breast feeding. Nope we need to wait. There is a risk of you getting a breast fissure. Go home & wean your baby. Come back in 6 weeks. I go home annoyed at yet another delay. I don't want to wean my baby so I called Jack Newman a world renowned breast specialist who tells me to only wean on the side with the lump. So that is what I do & 6 weeks later on October 16^th I head off yet again for a biopsy. This time they completed the biopsy. After which I immediately asked for an appointment with a surgeon. I got to hear yet again, you don't know if it is cancer. It is probably a fibroid. I said I want a surgeon who will do a double mastectomy & who does sentinel node biopsies. The program co-ordinator told me that she would give me that but I probably would not need it. All the same I made the appointment. Knowing that either way my tumour was growing after 3 ultrasounds I knew it had grown 2 cms in 6 weeks. I wanted it out. Something though told me I would need more than just my tumour removed. My instincts were right.

When I got the news back on October 23rd, I was alone with a house full of kids and more to arrive. My husband was sleeping after just having completed his night shift. I took the call calmly and oddly when I hung up I was still quite calm. There is nothing in the world that can prepare you for hearing those words. You have breast cancer. Those 4 words have irrevocably changed my life. The first thing I did was call my sister Sheri, as we had agreed this is what I would do if the news was bad. It was when I heard her voice that I fell apart. No sound would come from me, for this is when my first tears hit. She instantly knew, but made me get it out & tell her. I could hear the tears in her voice. We hung up with the promise of her telling my parents the devastating news.

In my family it has never been a question for me of if I would get cancer but when and what kind. Yes there is a strong history of cancer, although not a strong history of breast cancer. Therefore being diagnosed so young & with breast cancer is not what I was thinking. Apparently neither was anyone else.

The next few days I was numb & cried often. I was full of questions & constantly researching. The best thing I ever did was research. Within a week I saw my surgeon & when he said let's discuss our options.... I said STOP! I plan to beat this. I will be a survivor. I want a double mastectomy. Within two weeks on November 12^th this is exactly what I had. Each day leading up to my surgery, I told myself as I planned for it, this is going to save your life. The night before my surgery my friends gathered at my home, to have a bra burning party... the cost of admission, one bra. Friends from far away sent their bras to be here in spirit & even my daughter burned her favourite training bra. This truly was good for my soul. It was my own way of dealing with my loss of my breasts & it truly helped. Even before my mastectomy surgery I began planning a total hysterectomy because my research told me that I now have a higher chance of uterine and ovarian cancer.

One thing became clear though through all of this. That was that somehow I was going to make the Hell that I was going through be more than just that. I would share my story in the hopes that it would help others. I would share every detail, even the not so pretty ones. Starting with my bald head (take off bandanna) it's not pretty but it is me. It is who I am now. A wig has no place in my life. I no longer spend precious time taking care of my hair. I can shower faster than anyone in my house. I no longer have to spend hundreds of dollars on bras. The only kind left in my house after the bra burning party, is training bras for my daughter. I am sharing my chemo appointments and any others that will help. I pray my story will make a difference for even 1 woman the same way Aundrea Mason's story made a difference for me. Though are stories are similar in that we both found our breast cancers while breast feeding our babies, that is where the similarities end. Sadly Aundrea passed away a year ago last month. She did not beat her breast cancer, even though she put up such an amazing fight. Her story made me more vigilant & demanding in my determination for a biopsy that I was told was not necessary. I credit her & my daughter Kelseigh for saving my life. For if not for my breast feeding I would not have found my lump. You see, I was so large busted that I did not do the one thing I am asking all of you to do every month. I did not do self breast exams. If not for Aundrea I may not have demanded that biopsy. So to Kelseigh & Aundrea I owe my life. To you, I say please do self breast exams. Early detection is the key to surviving breast cancer.

From the time I was a little girl I always looked out for others. Never knowing, that one day I would desperately need others to be there for me. That I would have to let my mission to survive become theirs. Breast cancer may be my disease but it has taken a village to help me get through it. I have had several friends who have emotionally helped me handle this. I have a village of friends & even total strangers who have brought meals to my house, washed my cloth diapers so I did not have to stop using them, babysat my children, run my daycare while I had chemo, come to my chemo appointments & Dr. appointments with me, & just really been there for me. I could not have gotten through it without them. Treatment is hard, but WE CAN DO IT. We CAN'T do it alone.

The thing is breast cancer changes you inside & out. The outward changes are obvious. The inside ones not so much. For me I have forced myself to become educated. I have learned more about breast cancer in the lst 6 months then I ever cared to know. However, it has been necessary & I continue to this day to educate myself. It is never really "over" for us.  This is a major life-altering experience.  Don't expect us to be the same as we were.  We are changed.  There is no "getting over it."  We come to accept that; those who care about us need to accept that as well. If you know someone who has been diagnosed, and you don't know what to say, say so, but don't make glib "positive" statements and, don't start reciting bad outcomes like, "my aunt had breast cancer and she was dead 2 months after diagnosis."

Breast cancer also makes all of advocate for our own health. For me it has also made me feel the NEED & desire to become an advocate for those who will surly follow in my footsteps one day. I am working to make changes for other women so that if that horrible day comes and the devil pays them a visit it will be easier for them. I am working to get a plan in place so that no woman will ever have her biopsy delayed due to breast feeding. I am hoping in the future to get a program that I call Survivor Companions in place so that when a woman is diagnosed with breast cancer she will immediately be matched with a survivor who can walk her through what comes next & hopefully be there through her entire treatment & beyond to help her with whatever she might need. I am also hoping to get a program in place through the health unit where we go into high schools starting in grade 10 & talk with high school girls about the importance of breast exams & early detection. Those girls will surprisingly probably educate their parents. As well I want a program put together where parents of young girls get a brochure from their family Dr.'s when their children are about 13 to teach them about how to do self breast exams. You see if we teach it early it will become habit like brushing your teeth or hair every day & girls will be used to doing it so they will continue to do it all their lives. Early detection is the best treatment for breast cancer. It offers us the best chance at survival.

There are also emotional changes that come with breast cancer. For instance, I am constantly waiting for the other shoe to drop. With every pain or headache or leg cramp I wonder... IS IT BACK??? You see breast cancer does not stop at your breasts. It often invades your lymph nodes & from there it can go to your bones, your lungs, your liver, or your brain. It travels not only through your lymph nodes but also through your blood stream. So even if you find out that none of your lymph nodes are infected, this does not mean it won't come back. In fact depending on the kind of breast cancer you have, sometimes it prefers to travel through your blood stream. This is why even though you might get a double mastectomy like I did; you would still need chemo and possibly radiation too. The chemo is to kill whatever might have traveled through your blood stream or lymph nodes & the radiation is to kill whatever cells might have been left behind in the tissue where your breast was or your lymph nodes were. Especially if your tumour was close to your chest wall or your skin. 

I want to tell you a few facts now about breast cancer. Facts I bet you will be surprised to hear. I know I was. For starters, 1 in every 8 women will be diagnosed with breast cancer. Every 2 minutes a woman is diagnosed with breast cancer. Every 14 minutes a woman dies of breast cancer. WAY TOO OFTEN!!! In the amount of time it has taken me to give this speech, more than 10 women have heard the devastating news that they have breast cancer. Approximately 249000 people will be diagnosed in just Canada & the US in 2009, and of them 49000 will die of breast cancer. That is about 20%. More that the entire population of Grand Rapids Michigan. Globally, more than 1.1 million women will be diagnosed with breast cancer & more than 410,000 women will die of breast cancer this year. To me the statistics are staggering. Did you know that breast cancer is not just one simple disease? There are 8 different types of breast cancer right now and 5 subtypes of breast cancer & they are not sure they won't find more. As well each type of breast cancer then has to have a pathology report done. This is just as important as the type of breast cancer you might have. This is what stages your breast cancer. The stages go from 0-4 with stage 2 having stage 2 a & b, and stage 3 having stages 3 a, b , & c. Staging is based on the size of your tumour, whether lymph nodes are involved, and whether the cancer has spread beyond the breast. Your Dr.'s use your pathology report as well as the stage of your breast cancer to determine your treatment. Finally your pathology will also tell you your hormone receptor status meaning if your cancer is progesterone or estrogen positive, or Her 2 positive. If it is not any of these 3 then it is referred to as triple negative. What this means is this, if you have hormone receptive cancer then you can take tamoxifen after your treatment to prevent recurrence. If it is Her 2 positive then you can take Herceptin top prevent recurrence. If it is triple negative. There is nothing currently available to prevent recurrence. Although there have been major breakthroughs in therapy for some types of breast cancer (e.g., hormone

receptor-positive and HER2-positive forms of the disease), treatment options have not improved much for other types. For example, so-called triple-negative

breast cancer (a tumor that tests negative for hormone receptors and HER2), which is associated with a shorter survival time. MOST BC is NOT genetic (only 5 to 10%.)  Many don't know that after treatment there is a risk of lympedema. Lympedema following breast cancer treatment is an abnormal accumulation of lymph fluid in the affected arm, hand, fingers, wrist, elbow, shoulder, neck, breast, chest area, or any combination of these areas. The word "affected" means the same body side on which you received breast surgery or radiation. The excess fluid build-up leads to persistent swelling and other distressing symptoms, including pain, heaviness, firmness, tightness, and numbness. Lymphedema usually develops slowly over time but it can also develop soon after surgery or radiation or even years later after breast cancer treatment. Not everyone who has been treated for breast cancer will develop lymphedema, but many will.

Many people forget that breast cancer is a deadly disease. Though there are many women who do get cured, there are also many women who live with breast cancer for years. They are stage 4 and have a chronic illness. People forget that they are dying. They see them going on with life as anyone would for as long as they can & they forget that these women are living every day with a deadly disease that could at any time make a change for the worse & they could die. These women more than any other need our support, compassion, & understanding. They live every day wondering will it be their last. They live putting their affairs in order & enjoying every minute they can get out of life.

People also forget that the caregivers & families of women living with breast cancer are suffering too. They are dealing with this disease just as the woman with breast cancer is. Their families are suffering too. Especially their children. They need our support while their mom, wife, sister, or daughter is receiving treatment but also when that treatment ends. They too live in fear of the cancer coming back or of the cancer taking their loved ones life.

Breast Cancer doesn't look around for the most suitable host -- fat or thin, old and young, no children and multi-moms, etc.  Do NOT think you can avoid it; if it isn't you, it will be someone in your family. This is the reason we must keep researching & fund raising. So we can continue to improve treatments for all breast cancers & so that one day pink will be just another color of the rainbow & we will have a cure.

I just wanted everyone to hear a few breast cancer statistics, and to begin to grasp the enormity of breast cancer & what it involves. I am betting that many of you in this room had no idea the statistics were so staggering. I know I didn't have a clue before I was diagnosed. You may be asking yourself if you are at risk.

Being a woman and getting older are the most important risk factors for breast cancer. Several other factors are known to increase risk:

• Testing positive for BRCA1 and BRCA2, the gene mutations commonly associated with breast cancer
• Having a previous biopsy showing overactive cell growth (hyperplasia) or cancer contained within the breast (carcinoma in situ)
• Having a mother, daughter or sister who has had breast cancer
• Having dense breast tissue
• Having a personal history of breast or ovarian cancer
• Starting menopause after age 55
• Never having children or having your first child after age 30
• Being overweight after menopause or gaining weight as an adult
• Having more than two alcoholic drinks per day
• Using hormone replacement therapy (HRT )
• Being under age 12 at the time of your first period
• Recent birth control use
• Being of Ashkenazi Jewish descent

The thing about breast cancer is that it changes you inside & out. I lost my breasts, they won't grow back. Who cares!!! I AM ALIVE!!! I lost my hair. It will grow back I hope. Again who cares, I am ALIVE and I will be a survivor.

On October 4, 2009 I will do the CIBC breast cancer 5K walk. I will bust mine as I have lost mine in hopes that one day no other woman will have to lose hers. I will walk because everyone deserves a lifetime. So my team which has already begun to be assembled and is called Beauties Against the Beast will walk for the future lifetime of every woman or man diagnosed with breast cancer. We will walk for your daughters, mothers, sister's, nieces, aunts, and friends. I will walk so my daughter's Keileigh & Kelseigh won't have to. I will walk so our children can conquer their dreams instead of cancer. Will you walk with me?? Will you join my fight?? Help me make pink just another color again

crazy4carrots

Momof4Stars:  I hear a standing ovation!!  You covered everything so beautifully and so honestly.

Cheers!

Linda

Brendatrue

You put a lot of time, energy, information and HEART into this presentation. I imagine you had a huge impact on your audience. I hope you will continue to do well in your own recovery from treatment and as you continue to educate others about this disease.

scrappy_survivor

It was an emotional night. I had hoped to get through the speech wihtout tears.... but nope could not do it. Not yet anyway. They invited me back next year. I got at least 1 person to join my team that I know of possibly more. I was also told about a program that might help me implement some of my ideas. I am tired & thrilled. I did not know the emotion my speech would bring back up. However, I am thrilled to ahve done it & had the opportunity to educate even 1 more woman much less a whole room full. Thanks for all the help & support ladeis.