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

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

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.

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.

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...

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!

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?

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, @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

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.

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.

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!

@katg

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