Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting
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In another chat i have participated in only online, it was said by a mentor that what happens on these boards is what her mom used to do in person. Cozy together her mom and friends would gather together with coffee to solve the problems of the day. Also, to support each other in their lives. Those without breast cancer will learn about how their loved ones, friends or coworkers may feel, but to us peer to peer, we know how it feels.
Before the internet we had phones, drs offices and neighbors. Friends and families who tried to support and encourage. Here you have those who have lived it.
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A few years out of radiation and I am finally seeing changes to the size of the affected breast. Maybe the lymphedema was masking the shrinkage. Normally I wear loose tops anyway. I was always self conscious about having larger breasts than I would have liked. It feels rather odd to look down and wish they both were shrinking at the same rate. How weird is that? LOL !
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I remember before the website revamped having so many ongoing posts with people. Now when i check in, silence? Covid took people online. For me, it is a check in on people. How treatment or life is going post treatment. I see some categories i have followed with daily activity. It looks to be a handful of people that regularly post and keep it going.
I posted on a new tab about genetics, but i will post here my update. I had stopped wearing my compression stocking as i got tired of it. My blood clot was in 2022 and checked again in 2023. I had noticed recently as i was wearing capris again because it has gotten hot. I was again looking at my ankle's side by side. A bit swollen on the clot side. So, at my yearly MO visit with my ultrasound i asked the NP to look at my ankle. She said it is swollen, so i will order you an ultrasound. This was Friday, so the next Monday i had an ultrasound and by 4pm Friday while at my retreat, I got a call from the NP that i needed to get to a pharmacy now. Find one close or you will need to dive down the mountain. Your first clot is not all gone and now you have a new one. If this breaks off, it could lead to a pulmonary embolism. My internet up there was shaky, but she had seen me in the short tele-visit we had that I looked good. I asked her to see if there was a pharmacy near Pinecrest. There was. My meds were there when i got there un 20 minutes, and i was back to my retreat in 45 minutes. Eliquis again and in 2 weeks a call with the coagulation team and a tele-visit with my MO.
As we say, most side effects we never got, but others we do. The original clots hematology dr said i could be chronic for clots. I thought no way! Today, that is what i am listed as. All good on the outside, but things happening inside i needed to see by changes in what i saw and felt.
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@katg Holy cow Batman! What next? You have been through the wringer dang-it. You deserve a break from all this dookie. That blood clot needs to go away and leave you alone. I hope you were still able to enjoy your retreat. Being on a mountain sounds really good to me right now. What was the subject of the retreat? I had one for quilting with an amazing group of friends in February.
I miss all the internet connections too. Especially in these disgustingly early morning sleepless nights. I know you know all about sister stuff and can empathize. I made the 2-hour drive to visit my parents on Friday after work. I’m awake at this hour because I got home from my parents’ house at 2:30am because my b!tch of a sister who lives 20 minutes from me (the one who said my chemo was hazardous to her) showed up at the ER where I had taken my dad because he was more incoherent and weaker than usual after taking Benadryl for what he thought was an allergic reaction to eating chocolate with almonds. He had back surgery a couple weeks ago and is on all kinds of drugs …none of which I had access to knowing because the b!tch has power of attorney and is working very diligently to cut me out of the loop. Dad has cognitive issues and has let her manipulate him. When the amazing nurse who had been taking care of us for over 2 hours handed me the discharge report, the b!tch yanked it out of my hands as I was trying to read it and said “no! you are not his medical power of attorney!.”
I can’t stand to even be in the same room with my sister anymore. Thankfully the nurse who saw this happen, brought another copy, walked past my sister and handed it straight to me again. I had been very straightforward with staff that I was his daughter and that I would do my best, but that I couldn’t answer all of their questions and that I couldn’t give them any authorization for treatment because my sister who had medical power of attorney was cutting me out of any access to his medical information. Every staff member was so nice to me, especially when during his intake paperwork it became known that I wasn’t listed as one of the emergency contacts in his medical records and both of my parents said in unison that was a mistake that needed to be corrected.0 -
I am glad i checked this thread. I was at a women's retreat that was started 37 years ago to connect sober women of AA and Al-Anon women. I am of the 2nd group. And a portion of that group is another tool in my toolkit. From them this site and mayo clinic I keep walking forward. Minus one of my sisters.
Sisters. That sounds like my brother from 2016 and the end of my mom's life. I am happy to see the nurses get it. Fear and anger from sisters. I remember your sister and the story of your chemo. I love that your parents wanted you on the contact sheet. There is nothing we can do to see eye to eye with them. Crazy. As long as you have parents, keep with them. They are yours too.
My older sister was jealous of certain things I could do that she could not. Finishing my cancer treatment then my MDS treatment is not something she did with her own starting 2 years after me. She has not recovered from her intestine problems, and she answers none of the text messages i send. She only "likes" my messages. I told my younger sister she may just be waiting to get back to us when she is recovered. I have often said i know little about her treatments through either issue. She went to a different hospital for her intestine issue, and I wondered today if she has notified COH or continued the treatments, she was on for her ovarian cancer. She was still doing infusions at COH. After chemo treatment.
She follows "Chris Bets Cancer" and his facebook posts and books. I am reading this guy's materials as it helps me understand my sister. He insists that eating right, and a number of other tools will stop cancer in your body. You will heal your body if you to these things. He did it?
A day at a time remove processed food, and other modified items. Check. Exercise- Check. Water-Check. Skip conventional medical treatment and use his path to achieve healing your own body, not so much.
I love that you quilt!! Wishing you some good times in April.
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@katg I had to laugh at the “skip conventional medical treatment” part. If all those healthy living things prevented or cured cancer, I (probably like many of us) know a few people who should still be here. To each his own I suppose.
I love having a group of people to quilt retreat with every year. I also have a group of friends from our high school days in Norway. We meet every 5 years in a different city because it’s too expensive for everyone to fly back to Stavanger. Eight of us did meet in Stavanger last June 21st for a mini reunion on the summer solstice. It was my first time being back there since 1976 and Midsommar is my favorite holiday so it was a triple special day. There’s nothing like 24 hours of daylight on a summer evening with old friends in the place your heart feels is your true “home”. I was shocked that I could still understand so much of the language after …how can it be?…50 years! I was only 14 when we came back to The States. It was a hard transition back to our way of life here. Memories…I’m trying to ignore my sisters’ hostilities and enjoy time with my parents. I keep track of every time the sisters deny me access to information or try to make it difficult to see my parents. What they don’t know is that those actions can be grounds for some legal consequences when the time comes. I plan to challenge my sister’s history as the financial power of attorney and demand full disclosure of her management of their finances when it comes time. Revenge best served cold they say.
Hope you are doing well. I’ve started a new quilt by our Australian friend and I hope to show it to her in her hometown in 2027-ish. New bucket list item. “Quilting in Australia with friends.”
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Good idea with your parents and sister. It reminds me of a motto i use and keep using. When faced with a choice i may not want to do, i ask myself if tomorrow or a week from now I will wish i at least tried. This has made me take the chance that i have rarely regretted. You have an excellent plan she likely has no idea about. For her, it is all about her!!
I agree about the Chris fellow. Studies show healthy eating, removing foods with additives, him having the surgery to remove the tumor was likely his cure based on stage 3 colon cancer diagnosis.
I have also kept evidence of items with the supervisor in my department. He is an individual that goes to the past, yesterday 3.5 years ago. I had to remind him i did not do what he said, i did forward him the student email to answer. Being that is literally all he does in our department beside attend conferences and meetings around the counties, is to work to connect students with our department. That is his job.
Make sure you show us pictures of the quilt. With that, I love that you have stayed connected. Sometimes in life we wish for friendships like that and may realize we did not cultivate them.
My younger brother who was estranging himself from my 'moms' death in 2017, was recently laid off from the City of Hope hospital center i am treated at. He donated platelets there for a decade but decided recently to go to the Red Cross where i went for 25 years. I must say i am still disappointed my transplant stopped me from donating. My brother saw one of the nurses that has been there for decades. Years ago, she said she told her teen daughter to keep in mind, that every boy she chooses to sleep with is providing you remnants of all women he has been with as well as those women's hook ups in the form of body fluids of some type. Not to mention disease.
He asked me to visit; they would like to see me. I think this is good timing. I can see how else I might donate my time.
Quilting in Australia sounds wonderful. We need to plan those dreams as you show.
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Today I spent some time with my brother-in-law. His wife is my sister i often talk about. My sister will not be on this earth long. She has spent the last 3 weeks in the hospital. Her cancer was not gone. She never told my younger sister who is very disappointed. Her lung filled with fluid as did her legs. Her husband has gotten her to want to do better to recover enough to get out. I have visited her every day. She sleeps most the time. It is hard to believe as she says she will move more once she gets home.
There is nothing i could have done. Her husband said she is so very stubborn. He wanted her to take the drug like i did, one like Lynparza. She refused and told him to stop asking. The cancer resurfaced. That is when he made her go back and do the full treatment. He said please. I want you to live. Sadly, ovarian cancer is no woman's friend. The one question i want to ask him is whether he knew of my family letter.
To my friends, I know i still have her here. This is a day at a time.
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Looks like few have come to this thread through the meetings. I share because i feel my siblings will not read this, but if they do, it will be a conversation we can have.
My sisters 3-year journey with ovarian cancer ended yesterday. Her lungs kept filling with fluid over the last months and the last MD hospitalist at the final hospital laid out the truth in a way that was heard. The whole floors nurses and respiration people were so very good. The one the night before my sister passed i had to thank. She completed most of his exercises unlike all the other therapists. My favorite RN I had told some of the family story to. She told me about her family. She became a wonderful resource as all did who had cared for my sister since last Thursday. All of them had tears.
I decided this last week to get the "guardant reveal" which is like signa tera. I would like to see if anything shows. I am at 5 years since diagnosis in July. My brother who had still not gotten the genetic test, but plans to now, said cancer is in all our bodies!!!! I told him i read that. Through a series of ways, we may play a big part in cancer developing. To him i said I have had 2 cancers. I want to see what it shows. He understood.
I want to say my sister did not finish the conventional treatments at the start after the complete hysterectomy. She wanted to find her own functional treatment. That time made me sad. Ultimately the cancer roared back, and her 2nd round of treatment was never completed. Too many other issues in her body came to pass that could not be overcome. Powerless. That was all i could think through her treatments. So far, my conventional treatments have given me some good days strung in a row.
I may log in to the zooms, but not sure when. Love our families and friends as they make choices. It is their life and their choices.
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@katg Kathleen,
I am so sorry for your loss. I know your relationship with your sister has been a very difficult one and I’ve admired your dedication to keeping your connection through it all. I wish I could follow your example. I hope you and your family can find peace in the fact that she isn’t in pain anymore. I know how insufficient those words are, but we know all too well that words will never fill the holes.
My parents are now in a senior community less than 30 minutes away from me. It has independent, assisted and memory care. They are in an independent unit, but they really need assisted living for my dad. I don’t think he has a lot of time left, but at least they are somewhere they can get support and not be hours away from me or my youngest sister.
My sisters and I have reached a point of no return. They had my parents’ house bugged and eavesdropped on a conversation I had with my father the week before they moved. He was having regrets about having selected my youngest sister as his power of attorney and second guessing some of his decisions about details of the move and where things would be stored that aren’t going to their new home. He wanted to make sure that some of the things he and my mother want to leave to me would be given to me that weekend. Both sisters called him to guilt him into doing the opposite. During the calls it became obvious that they had been eavesdropping without my parents’ consent. Long story short, a few days earlier they had taken the things out of his safe and their safety deposit boxes. They both said things that just can’t be forgotten or forgiven. While my parents are not okay with having their privacy invaded, to the best of my knowledge, they also didn’t tell my sisters how much it angered them.
Needless to say, when my youngest sister gave me “permission” during my visits to unplug the Ring camera she has installed in their new living room “to monitor when they leave the unit”, I was not amused. I have a police officer friend who can locate hidden surveillance devices and I am contemplating agreeing to let him “visit” my parents. I suspect that there are more listening devices hidden in the apartment. I’m encouraging my parents to join me in the public gathering room for jigsaw puzzles and tea and coffee.I’m glad you were able to spend time with your sister. I often wish things were different for us both with our siblings. I’m so glad you had time to find your way to a better connection and that there were people there to support you both.
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Oh @katg, we are so sorry to hear of your loss. 💔 Sending love to you. Our Zoom groups will always be here to welcome you whenever you're ready or would like to dial in.
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Today i think of the help i found here when my friend said it helped her with breast cancer. A couple months after that a Covid topic came up and she was on the opposing viewpoint and left the site. I bring this up as i had been reading her posts and got to know about her journey. Sometimes we can only share with those who have walked through it. I still speak with her, and we share all sorts of things off this site. For 4 plus years. I have found other kindred spirts. Those who know.
I am not sure my sister joined these types of sites. I am not sure as she never told me. I know they are not for everyone, or the zoom room would be filled. This site would be overrun. My other sister joined a BRCA1 and Brca 2 facebook group. I joined to see why she liked it. I found it. Oddly, it is mostly women speaking on whether they are having mastectomies. So many are young with Mom and parents. Possibly my younger sister will go there when she has her DBL mastectomy she wants to do preemptively. Sometimes our families cannot hear us. They are looking for answers. For my older sister, I often felt she sought out the care resources that fit what she wanted to do. Not what the oncologists wanted to do.
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Kathryn..I forgot to respond to your post. I hope you do take your police friend. Check if they have devices. At this time your parents need loving daughters. Sisters who think they may catch cancer are something special. All in all your sisters sound selfish. In some ways my sister began creating a connection with our youngest sister. 2016 after my mom passed. My sister visited my younger sister, and they traveled to most states my younger sister and i never made it to. Memories. I will never get to have those with my older sister. My sister's husband gave our sister the photo book my sister made of their trip. My sister was the ultimate crafter and scrapbook maker.
So far it seems we need to look out for ourselves. For you, your parents, and taking them out to the community general area will be freedom for them. Do it many times. Looking at things in hindsight is not so good, when we know we could do things now to change the situation. Seeing if you might ask them questions without "others listening".
Keep us posted on this journey. I am glad you are there for your parents.
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@katg You are so right. We have to live today to the fullest. It doesn’t matter what happens to us in the future or how long we have. What’s important is to make the most of the time we have now. I’ve been in a real funk the past couple of weeks. My dad is really struggling with the change to being so dependent upon other people. It breaks my heart. I know I can make a little difference for them by getting them out and about. They aren’t joiners, so being social isn’t going to happen. If we had gotten them into a place 10 years ago it might have been different but we can’t dwell on what might have been. I am getting them out of the apartment and around other people. It is nice knowing my sisters can’t hear us…to the best of my knowledge.
I hope the sting of losing your sister is a little easier to handle with the support of your brother-in-law and your younger sister. Of course no one can know how it feels to another person, but grief has been a real struggle for me to understand. I lost the love of my life 10 years ago and it was nothing like losing my grandparents, uncles or friends. Steven and I knew each other since we were 19 and dated as freshmen in architecture school. He admitted he was gay in our sophomore year and I decided that wasn’t going to mean we wouldn’t be friends for life. Love and “family” are funny things. Blood and conventional relationships aren’t always the bond we expect them to be and I do believe that our bonds from sisterhood through breast cancer proves that. Like you said, if you know, you know.
I am always so happy to see you in group and hear from you here.
Much love and hugs!0
