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Share your stories of online support friends here: From the forums or zoom meetups

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Hi All,

We'd love to hear about the supportive relationships that have formed at Breastcancer.org.

Thank you All for sharing!
💜 Your Mods

Comments

  • amel_83
    amel_83 Member Posts: 169
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    I made a friend here, and I'm really happy about.

    She gived me useful tips and suggestions, and gived me hope in dark moments.

    Especially in a period when I didn't really have a personal oncologist following me do to hospital staff change it was very important to me, and not to many friend to talk about, as no many seem to understand.

    I also daily read everybody stories!

  • ingridgilbert56
    ingridgilbert56 Member Posts: 1
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    I am in the opposite situation. I have a stressful situation with a friend and I really need some space from the drama. Once you say you have cancer people feel like they shouldn't leave you alone, even if you ask nicely.

  • moderators
    moderators Posts: 8,282
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    @amel_83 We're so glad to hear this ❤️

    @ingridgilbert56 Yes, it really depends. A cancer diagnosis affects our friends, loved ones in such different ways. Some pull away (ghost), so go the other extreme. Hopefully you can have a conversation where that person can understand.

  • aprilgirl1
    aprilgirl1 Member Posts: 786
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    Getting diagnosed with breast cancer is an emotional roller coaster. Getting diagnosed with Metastatic Breast Cancer is the most devastating event I have experienced in my life. So many unknowns. I have found wonderful support on the Stage IV discussion boards as well as the zoom meetup i attend weekly.

    My family and friends are supportive and care but no one really understands what we are going through like the other members of this site that share in the diagnosis. Besides support I have learned a lot of information about treatments, how to lessen side effects and also learn what new treatments are coming available. Sadly, I have also lost a few friends that I have met on here to this disease. This is the reality of breast cancer.

    Having a safe place to come share scary news and good news makes this stage IV experience less lonely. As we use our "avatar" names on here it is as anon as you would like it to be. The zoom meetup is less anonymous, but I have met wonderful and supportive friends and look forward to seeing them each week - including the moderator who is amazingly supportive, nurturing and keeps our group together :)

  • moderators
    moderators Posts: 8,282
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    @aprilgirl1 - It means a lot to us to hear that you find support and comfort here and in our Zoom meetups. Thank you for your kind words. We're grateful to be part of a supportive community like this, especially during such difficult times.

    The Mods

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 97
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    I have met so many amazing women in the Zoom meetings. I look forward to sharing their good news and supporting them through their rough days. If I can lighten someone’s grief, even just for a moment, I feel like I have contributed something to someone else’s journey. There are many days I need a lift and these ladies are such a blessing to me, many times without knowing it.
    I’ve actually gotten to meet some of them in person. What an amazing experience! We truly are bonded by breast cancer. We support each other in the meetings and in the “real world”. I couldn’t have imagined how this group would become so powerful in my life. I’m so grateful!

  • moderators
    moderators Posts: 8,282
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    We are so happy to be able to provide this service for you, @kathrynw1thasea, and grateful you have found such support and community. This post made our day!

    Hugs to you!

    —The Mods

  • goldensrbest
    goldensrbest Member Posts: 686
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    I so love Mel’s living room for those with MBC. The support is tremendous, whether there is good or not so good news. Even though we are all separated by many miles, I feel connected like family. These women are the sisters I never had🥰.

  • katg
    katg Member Posts: 222
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    I joined i believe after my chemo had begun i late 2021. A friend who had been on here suggested i join. I agree with other posts, that unless you have walked this road, it is hard to understand. The whole road, from diagnosis, to treatment, through treatment and after. Few of us share the same diagnosis, but we empathize based on our own treatments. Someday someone on here will be on Lynparza!!!!

    As i shared in a zoom meeting, my treatment for breast cancer had its last pill of Lynparza in June. Femara is ongoing. I was noting in July and August that my blood numbers were low. Platelets and white cells. I had pancytopenia which is all my blood numbers dropping following my chemo in 2021. My blood never fully recovered. I had an appointment with the MO in later August where i was going to ask about my blood. My NP who i usually saw did not return from pregnancy leave, so i got a sub-NP. I did not know her at all, and my blood numbers did not concern her. I messaged in the portal at COH for an appointment to get my blood checked out. I finally message the dr i saw for my blood clot and through her i received a call back from the Hematology department for an appointment in September. That doctor's specialty is Leukemia and bone marrow transplants. Yikes! When i saw him, he set me to have a bone marrow biopsy in early Oct, 2023. That gives the truth about your blood. It was noted in early 2022 after my mastectomy surgery that i had a TP-5 gene mutation. I never saw that in my results list. Well, seems that, the fact I had 12 rounds of 2 chemo drugs and 1 AC, plus my genetic results, I was diagnosed with MDS. Myelodysplastic syndrome. It often leads to Acute Myeloid Leukemia. As of October, i was asked if i wanted to be on the "Be A Match" donor site. I said yes.

    In short order, a donor was found in December that was a 10/10 match. Be a Match was running my donor through compatibility test with the City of Hope. I was then completing pre donation med tests to confirm i was healthy enough to have a transplant and by April 2nd I was at the start of conditioning. My transplant of healthy stem cells would be replacing my cells that contain mutations like Brca2 and the TP-53 mutation. April 9 is considered Day 0, My new birthday. A new life.

    I need to also say that a transplant requires a caregiver for 100 days who must confirm too before it is a go. I am not married; no children and I live alone. The only sibling what could help me lives in NY. For a short while I was worried, I would not be able to have his transplant. The cost of a caregiver was way too much to hire. A very good friend said she would reach out to find someone. Within a day she messages me that i could stay with her. I let COH know and off we went.

    I post this because for some of us, our health challenges continue. Breast cancer was first and every day i see my barbie boobs and know inside of me i no longer have fallopian tubes or ovaries. Those were a preventive removal, no disease. No another preventative removal. As so many on this site share, we can walk through anything by asking questions and sharing concerns and fears with those who understand.

  • moderators
    moderators Posts: 8,282
    edited May 13
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    Sending you love, @katg. You're going through alot and we're here for you!!

    @goldensrbest, we are so grateful for Mel's living room too 😍