I used to believe what you first wrote - "Who, ME?!" Me, make a difference? I still feel that somewhat; I haven't become a national advocate like you, haven't really taken the horse by the reins, though I do try to help via our local cancer center's volunteer program. I admire your spunk and energy, and especially your bravery and confidence. And I'm thankful you're out there advocating for ALL of us. Go for it! We only have one life to live, eh? PJH
PJ,
Thank you so much for your response. I actually admire you and the depth and inspiration in your messages and hope to be as knowledgeable as you one day. I read a lot of your posts and really I'm just a baby in terms of my advocacy...YOU inspire ME. :O) I hope we get to meet some day, you're something else!...and I mean that in a good way!!!
Much love,
Maimah
Maimah - Good on you! My take on your post is that you have tried to inspire those who are going through their treatment, that it is possible to use the fact that you have had breast cancer in a positive way. I fully endorse what you say about becoming a stronger and better person through adversity. I do, however, have to give a wry smile when I think that it's a pretty tough way to have to do it!
Nowhere in your post did I have the sense that you were trying to make money.
Sometimes, when you are going through the toughest parts of your treatment it can be hard to see that anything positive will ever come of it and this may account for Jeanne's attitude. Jeanne, we all hope that things get beter for you soon.
What does strike me, yet again, is the effect that your country's appalling health system can have in dividing people in this way. You have great doctors and treatments, but they are hamstrung by the power of the insurance companies. I have heard some dreadful stories of the extra pressure they put on people's lives during what is already a difficult time. It is scandalous that in a country as wealthy as America that people have to go deep into debt to pay for what should be their right - lifesaving treatment. Isn't it time that you all took a long hard look at this and questioned some of the assumptions on which this system is based?
Since my own diagnosis with IBC last October, I am grateful every single day that I live in a country where health care is accepted as one of the responsibilities of a caring society. In Australia we all pay a 1.5% levy on our income to provide health care to all. Those of us who want the extras like choice of doctors, private rooms etc can take out private insurance to pay for them at a fraction of the cost of health insurance in America. The companies are not as powerful here because people can get by without private insurance. In fact, here in Melbourne, if you are a public patient with cancer, you are sent to our Peter MacCallum clinic, the Aussie equivalent of M D Anderson and other big-name American centres. And you don't have to front up with $45,000 before they'll treat you or have them turn off your infusion mid-treatment until you have paid them some more money.
Your president wants to change this. Get behind him and make sure this happens.
Thanks, Sue, for your long and thoughtful reply here. Just to let you know, there are millions of Americans who've been dissatisfied with our health care system for many years. Unfortunately, there are millions more who thought it was just fine. Now, at last, it seems change is going to happen; the tide is turning, with our new President. Also, the health care system itself isn't completely, uniformly bad around the country. For instance, the cancer center I go to here in New Hampshire would never "pull the plug" on someone mid-treatment, due to an inability to pay. Our cancer center treats all patients, whether they can pay or not; which is one reason I work so hard on fundraising every year. So, we're not all as callous and unfeeling as the impression we might give the rest of the world! PJH
Oh dear, PJ!! I hope you didn't think I thought all Americans were callous!! That is certainly not the case or websites like this one wouldn't exist. I have found incredible warmth and kindness from other members of this community. I saw a report recently on your health system on one of our respected current affairs programmes and I was moved to tears by the plight of some of the people on whom they focussed - and this from a woman who has not shed a single tear over her own cancer! I guess knowing some of you terrific people makes me even more angry on your behalf that the financial burden is added to the already heavy load of dealing with cancer. It's not right and it shouldn't happen. More power to President Obama! -Sue
No, I knew you weren't painting with too broad a brush... But just wanted to let everyone know that something must change to make at least base-level health care affordable for everyone. Breaks my heart to hear about women who won't get a mammogram because it costs too much. Talk about our system being penny wise and pound foolish... How much does it cost for a mammogram? How much does it cost to treart full-blown breast cancer? 'nuff said. Cheers Sue - PJH
Maimah,
I'm so impressed that you are becoming such a strong advocate for breast cancer issues while you are recovering and taking care of your little girl. I've heard wonderful things about Project Lead, and you might like reading what I wrote my friend Gayla and her experience with it back in October. Congratulations to you for using your cancer experience to become a stronger, wiser person.
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THIS COMMENT HAS BEEN FLAGGED AS ABUSIVE.
Jeanne, thank you so much for your honest response. From the manner in which you responded, I can only surmise that you must be still in treatment or trying to figure out how to adapt to life afterwards.
While I don't see how you misunderstood me, I have to say that I too would never have predicted that anything good could have come out of my experience while I was going through chemo. I could write tons about my anger, my pain, my suffering, my cries, my scars, my fears, all the bad things that happened and all the hurts that occurred to me while in treatment, and actually, I have; however, at the end of the day, that is not where healing starts. It starts with trying to find a gem of learning, accepting what happened and having hope; and that is the perspective I chose to have.
I've talked to thousands of women in treatment, and like I was when I was undergoing treatment, they were scared out of their minds, and the number one thing they ask me, is "what is it like on the other side?", "will I ever get through this?" So, again, there is the HUGE reality of how much cancer does suck. It is awful, horrible, if it never happened to anyone, all the better, but it does happen, and how we cope and heal makes all the difference in the world.
Believe me, I live with the physical after effects of chemo and radiation every day. I worry about a recurrence because I'm triple negative and who knows if I will get a recurrence and if I do, as a single mother, how would I care for my child and God forbid, I die and leave her behind, what then? I live with watching the women I come to love have recurrences, and sometimes die. I live with meeting beautiful amazing women and I choose to walk with them through their journey because that is what my family and friends did for me, and it is my privelege to serve others in that way. I hear the voices of many women who are scared, crying, and have lost hope; however, when my daughter, young women I'm trying to educate or the women who are in treatment look to me for advice, as a survivor, I hope to give them a different perspective - one of hope, one of possibilities and one that inspires them to think and know that yes, there can be life after breast cancer.
Many blessings to you, and health and healing always.
Maimah
Jeanne, I think you had better educate yourself on what the National Breast Cancer Coalition is and its Project LEAD course and what it can do to help anyone become an advocate for breast cancer issues and concerns. I, too, am dealing with breast cancer. In fact, it has been 17 years since my initial diagnosis and since 2001 I have had several recurrences of breast cancer in my bones and one of my lungs. I am one of the Field Coordinators for the National Breast Cancer Coalition and a Team Leader for its Lobby Day, which is held annually on the last day of the Advocacy Conference.
I urge you to look beyond what is troubling you at the moment and begin to look to the future. If you are dealing with a breast cancer diagnosis yourself, know that you do come out on the other side with a changed life. Your life will never be the same again and you look at the world from a different perspective. What you do with that change in perspective is up to you, but most of us feel that we need to make some kind of positive change in the world, and that is why we turn to organizations such as NBCC and its Project LEAD course for help in stabilizing our lives and giving us a new direction.
THIS COMMENT HAS BEEN FLAGGED AS ABUSIVE.
Jeanne, I will again refer you to what I said about the National Breast Cancer Coalition and Project LEAD in the first sentence of my comments, not MAIMAH's website. I was not concerned with Maimah's personal site. That was not the point of my comment, and most likely not the point of her comments either. Please go to www.stopbreastcancer.org and check out NBCC and its Project LEAD courses. Your negative reactions need to be channeled somewhere else because all they will do is hurt you.
Wow, this is so interesting. The website is a 501c3, non-profit business entity (not a personal website) that is strictly focused on providing services to young women going through treatment. Yes, that does require raising money. There is no non-profit in the world that can exist without a fundraising component. Tigerlily Foundation was created WHILE I was going through chemo. Instead of focusing on the craziness in my life, I created it to help others. In order for my organization to provide meals, buddies, financial assistance and gifts to young women, I have to raise money, as does every other non-profit. I do not get a salary. Jeanne, I do suggest you re-channel and focus on healing.
THIS COMMENT HAS BEEN FLAGGED AS ABUSIVE.
I am really shocked that you took off that girl's comments and considered them abusive. I actually kind of agreed with her. And, if she is going thru some bad times with cancer, what a shame she couldn't air her opinion here. I find that sad, really sad that you did that.
I tend to agree with you too Barb. I didn't find anything offensive or abusive in her comments, or, the one I read anyway. I think it is always interesting to see and read different opinions, and, especially if you are going thru this horrible disease, it is nice to have a sounding board in sorts. Cause sometimes others in our lives don't want to talk to us, or, they are sick of our talking about cancer or we have noone in our lives. Guess we have to censor ourselves even on here. I thought she was just voicing her opinion, wrong that it might have been, and then seemed to be attacked by others. If you need someone to talk to, please email me Jean. Just let me know and I will give my email to you. I will listen
Thank you for your input, Barb. There were several complaints from community members about the tone and nature of the comments that have been removed.
Our community is a supportive place for people to share their views respectfully and in a constructive way.
- The Moderators
Darlene,
Thank you for speaking up. As you can imagine, it is a tricky balance maintaining a level of respect for all parties involved in a conversation and openness of perspectives.
Your reaching out to the survivor whose comments have been removed (as a result of having been flagged as abusive) is exactly the kind of constructive interaction we welcome.
- The Moderators