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Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting

Hey Everyone,

Here is a place to keep sharing between meetups.

Warmly,

The Mods

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Comments

  • cardplayer
    cardplayer Member Posts: 2,051
    edited May 2022

    Thank you for setting this up Melissa

  • jullyn
    jullyn Member Posts: 40
    edited May 2022

    Hi all. Looks like a quiet thread. Hope everyone is doing well. I've missed the last few meet ups and will miss this week as well. Just busy getting back to life stuff now that I'm done with chemo and radiation. Who knew wed have to jump back into the normal everyday stuff so quickly!

    Julie

  • cardplayer
    cardplayer Member Posts: 2,051
    edited May 2022

    No meeting this week. I hope everyone is having a good week.

    Had something odd happen this week. A profile picture from 2 years ago popped up on my Facebook memories. Made me realize how much I've changed in the last two years. I've lost weight in my face and my hair is thinner. Didn't show my body, where I had many change. Kind of a weird feeling. All of the changes that I've gone through since my breast MRI June 2020. Didn't know if anyone else had a similar experience.

    Nancy

  • jakeinva
    jakeinva Member Posts: 17
    edited January 2023

    This is the forum i mentioned on the call today - looking forward to connecting in this format.

    So doc visit went really well today -- said my reimplant "infection" wasn't one, just a bad reaction to "something". Not too happy about nebulous info, but glad I guess and super glad I didn't get too worried. My bod seems to not like implants, but they make me feel more normal for whatever that's worth. Off the RX and on to Cortizone to banish the crazy itching. Already feel better! Fingers crossed - Johnna.

  • collijr
    collijr Member Posts: 13
    edited January 2023

    I’m glad it wasn’t anything moreserious. I’m glad you’re feeling better already! Jodi

  • K-Gobby
    K-Gobby Member Posts: 144
    edited January 2023

    GOOD TO HEAR. I tell myself when i read something i do not understand in a report, to look up the words on med sites. Then go to the portal and ask the question.

    Today i messaged the plastics doctor who did my emergency surgery for a letter for my employer. Same day the letter was done. He gave me till the 23rd. I called them and please said revise. I was back the 13th. I do not have state disability at my college. I may have taken that week if I did. For now I must use sick hours.

    So they sent the revised letter. I also had the cover on where my drain is, and I was told to remove it and shower then add bacterial cream, gauze and tape. Praying i get it off the 17th.

    Wow. My hardest part of the journey is done. My medical oncologist now has tons more new patients. For today, I am on the maintain and watch side.

    June 2021. It all began.

  • moderators
    moderators Posts: 7,666
    edited January 2023

    Kathy, you're such an inspiration! It's been an honor to be along on this ride with you, and we're so appreciative of the encouragement, guidance, and advice you are always so quick and eager to share, not to mention the humor and brevity you bring at just the right moments. This feels quite a bit like a milestone, and we are thrilled for you!

    The Mods

  • collijr
    collijr Member Posts: 13
    edited January 2023

    I just got finished at the optometrist. My vision problem is Posterior Vitreous detachment. It's common with aging and nearsightedness. It can lead to retinal detachment. I'm keeping my fingers crossed that it doesn't. Still not convinced the Letrozole didn't have something to do with it.

    https://my.clevelandclinic.org/.../14413-posterior...

  • luluht
    luluht Member Posts: 2
    edited February 2023

    I’m glad you got a diagnosis. Hopefully it doesn’t get any worse.

  • luluht
    luluht Member Posts: 2
    edited February 2023

    I have my first diagnostic mammogram and ultrasound appointment this Wednesday since my diagnosis last March. I'm not one to worry or have much anxiety, but I am surprised at how anxious I am. I was cancer free after my mastectomy last April and my other breast was clear. Still I'm just a bit fearful. I know many of you have faced your scans since treatment, so do you have any suggestions about how I can calm myself and trust that it all will go well?

    UPDATE: All clear!

  • rs5
    rs5 Member Posts: 2
    edited April 2023

    I’m new here and am searching for the right community group. I’m past surgery and radiation but still in my first year of hormone blockers. I need encouragement and support, my 5 friends who’ve gone through BC have had or are in different situations than I am now so I’m looking on the interwebs for online friends & support.

  • moderators
    moderators Posts: 7,666
    edited April 2023

    This is a wonderful group of people. Maybe just give it a try and see if it's a fit!

  • dontwantthis
    dontwantthis Member Posts: 17

    Hi, are there still meet ups?

  • jakeinva
    jakeinva Member Posts: 17

    Hi all - it's Johnna aka JakeinVA. Great call today and let's chat over here! I hope this is the right spot (came in via the link in the weekly call email).

  • collijr
    collijr Member Posts: 13

    Okay…thank you Lili for the link. I look forward to reading past posts. Myself…I finished active treatment in October 2022. I tried Letrozole for 6 months and am now on Exemastane since 1/2023. The joint pain is much better. I have been experiencing eye floaters that neither my medical oncologist or optometrist believe are related to these drugs. Anyone else have this side effect or is it just a coincidence that the floaters started when I started on AIs?

  • collijr
    collijr Member Posts: 13

    I found it too! It's Jodi from Las Vegas.

  • katg
    katg Member Posts: 206

    This Kathy from the meeting-Katg

    I like to think of this place as the coffeeshop online. Gab about your latest successes and all that jazz. I was thinking today that i rarely spoke of the loss of muscle in my body. I lost weight, but the 3 months of infusion chemo, the month of pills, the Covid in Jan of 2022 and surgery and its fun side effects till May of 2022 had me more sedentary then i have been all my life.

    I have worked most of my life on my feet and lifted weights for such for a long time. I was overweight at the start of my journey and by my surgery I had lost the 28 extra pounds I carried for a number of years. Yet one day I looked at my arms and thought????? OMG!

    As I did not get disability as a California Union worker, I worked during all of my treatment. I only took days off when it was bad. Like my hospitalization in November of 2021. Covid was a blessing cause I worked from home. Mostly from my couch. Had Mitel installed on my phone so my lazy supv did not have to answer the phones and I could. He truly was dreadful. He honestly thought i was living easy as he returned to the office in July of 2021. I had the blood clot, hereceptin and Perjeta infusions and the starting of Lynparza, so i got a doctors note that kept me out till July of 2022.

    Reading other peoples journeys kept me focused on my recovery and reaching out to friends and family when i needed connection.

  • katg
    katg Member Posts: 206
    edited August 2023

    I had an eye exam a year ago and they check the back of the eye to see if anything is out of Wack. For now, that part of me works. Now for teeth, that was talked about a bit today. I had one implant in my mouth and that continues to be the metal in my body that remains. My joint pain is way better after stopping the Lynparza in mid -June. Very interesting. The Herceptin and Perjeta were additionally what I was on with the frozen shoulder. Interesting Mrs. J how the more we talk about the more we have in common. I do hope others will join us here. I know 2 others spoke of eye issues…….

  • jakeinva
    jakeinva Member Posts: 17

    @katg, @collijr - great to see you guys here. Kathy, long list - here's hoping we can all say we're getting close to the new normal we can embrace. Jodi - keep after the eye docs. Seems they tell you really scary stuff and then they say "oh that's okay." So I guess that's good news. 🤷‍♀️

    My "stick" figure is even more of a stick now! Hard for me to maintain, let alone gain weight, but trying. I planned to start weight training just as the whole mess hit me - now 1 1/2 years later guess I better get on that - the birthdays are getting closer together all the time!

    Johnna

  • katg
    katg Member Posts: 206

    Glad you Posted Johnna. As we all settle into that new normal, it is good to let us know the passions we pick up again. Painting. At some point, let us have a peek at the beauty.

    Me too on the weights. Little by little my strength is getting back. And seems gaining weight can be as hard as loosing.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82

    Hi y’all! Catherine from Dallas here. I haven’t posted on Bonded before. In Treatment was a great thread and I look forward to this one now. It has been so very comforting to see some familiar faces again and to meet new ones.

    I’m wondering how many of us have taken up or gone back to a hobby we had given up before our diagnosis or as a consequence of treatment. im just getting back into quilting after losing the spark during treatment. It was going to be my distraction and my stress relief during treatment.

    I had been only a few years into quilting when I was diagnosed. During treatment I had become averse to it because the long arm quilting machine my parents bought for me and my sister shortly after my diagnosis was at her house. She claimed that her GP told her that being around me in the first 72 hours after chemotherapy was a danger to her. She would never explain why and of course the only days I felt well enough to quilt were the days immediately after chemo. I was heartbroken and lost interest in my new creative outlet. Things got quite ugly when a dear friend bought me my own long arm and my sister accused me of manipulating my friend into buying it by making her out to be a “mean person” and banned me from ever using our long arm without consulting our parents. For those unfamiliar, long arms are a big investment. It’s not like convincing someone to buy you dinner. Our parents spent $12k on it. Honestly, I think she felt guilty about the deception but couldn’t find a way out. To this day she has never explained it and her defensiveness when challenged was totally out of character. I believe she lied to cover for her husband not wanting to be “exposed” to cancer and chemo…it’s “toxic” you know. Apparently we “contaminate everything we touch”. We live 20 minutes apart but I have only been back to her house once in over a year to meet my great nephew. I have finally found the motivation to start enjoying my creative outlet again by joining a local group who “Sit and Sew” at my favorite shop. I regret having let the issue with my sister rob me of the joy, but I’m taking it back. I mourn the loss of my relationship with my niece and the potential for a relationship with my great-nephew. But relationships are not one sided and I wasn’t the one who closed the door.

    So second question…have you “lost” someone because of your cancer?
    It seems to be a thing that happens more frequently than we realize.

    Looking forward to our next group meeting.

  • jakeinva
    jakeinva Member Posts: 17

    @kathrynw1thasea - sorry to hear about your situation and hope time does heal all wounds. Kudos to you for getting past it and finding new joy with your creativity and new friends. Creative endeavors seem to bond people so maybe that will come full circle in your family.

    Cancer seems to hit people differently. Both to those of us that have it, and those who don't. I guess we're all allowed to feel the way we feel. This is a very private thing to me so I don’t have any answers to your question, but it sounds like a great topic in this space. Hang in there! Johnna

  • moderators
    moderators Posts: 7,666

    Hi @kathrynw1thasea (and all)!

    You might be interested in this Podcast we did on what's called "Cancer Ghosting" — when friends or family seem to disappear after a breast cancer diagnosis. Check it out:

    We hope this helps!

    —The Mods

  • collijr
    collijr Member Posts: 13

    I'm not sure I really have any hobbies, Catherine. I tried to learn to knit or crochet when I retired. I just didn't have the patience. It seems like my life is always so busy. Having an adult son with special needs consumes most of my time. I just try to get to the gym and take moments for myself when I can. I know it's important!

  • katg
    katg Member Posts: 206

    I learned to knit again in 2010, but like others, Chemo made the whole effort tough. Shoulder and joint pain oh my!!! Today was my birthday and I worked part of the day. But, I bought some new shoes and 2 new hats, a dress and a shirt. By birthday gifts to myself. I have not bought a good pair of shoes that fit right in years. This girl has very wide feet.

    I did not loose anyone to cancer, but my Mom passed in 2016, my brother stopped talking to his sisters in 2018 and in 2020 nothing from him. I messaged him the family letter about my Brca2 and nothing.

    My older sister asked him for our moms medical history as she walks through her ovarian cancer. Hr provided it to her. I found out from my other sister that my brother and his 32 year common law wife have split up.

    Changes happen and seeking answers to why is draining. I figure I will know when I know and my brother too will open the door her slamed shut it 2018.

  • moderators
    moderators Posts: 7,666

    Wishing you a very happy birthday, katg, we're so glad to hear you celebrated and treated yourself!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82

    The Cancer Ghosting podcast was very informative. I definitely went through the full range of emotions described. Most days I’m comfortable with my decision to keep them at arm’s length. I’m here if they make the effort, but I’m not going to put myself in the position to be disappointed by their actions. I have other people who make the effort to be in my world.
    On a much more positive note, I’m going to Vegas for fun and business. I mentioned thinking about going to see Ed Sheeran in concert and my boss (who was just named director of operations) decided to not only make it happen, she is going with me and taking her 10-yr old son and his best friend. I’ll be staying over a couple of days to meet my teammate in the Henderson office and meeting with leadership to build a stronger relationship between us and them during this transition period. When she recruited me to join her in this adventure of building a Texas branch and setting the example of how the company can thrive under new management, I wasn’t 100% certain I would have the energy and confidence to be as big a part in leadership. She has been such an amazing inspiration.
    Bucket list item #1 - check! Career goal - reset!

  • jakeinva
    jakeinva Member Posts: 17

    Catherine, that is awesome attitude and awesome news! Always forward.

  • jakeinva
    jakeinva Member Posts: 17
    edited August 2023

    @katg

    HAPPY BIRTHDAY 🎉🎂🥳🎈🎁🍾🥂 - my sisters are quite fond of the phrase "retail therapy!" Cracks me up every time. You wear it well!