In Treatment Zoom Meet-Ups: Place to keep chatting
This is a space held for our In Treatment Zoom Meetup members to gather in between meetings for updates and support.
Join our Virtual Meet-ups!
- Tuesdays at 1pm ET, register here: https://us02web.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC#/registration
- Thursdays at 6pm ET, register here: https://breastcancer-org.zoom.us/meeting/register/tZUudOmrqDItE91CwFXkf0p75el7SANg3Ehv#/registration
We hope to see you at one of the meetups!
Comments
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Just finished up with the optometrist. So…it's 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.
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Jodi, so glad you got it checked out right away! Is there some sort of treatment or therapy that can prevent it from progressing?
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thanks for the update - keeping fingers crossed!
Johnna0 -
Hi all! I’m checking in to give you an update.
I’ve missed the Thursday group meetings, but felt a bit odd about attending after completing chemo and radiation. Now that I’m being regularly treated for lymphedema perhaps I’m still “in treatment”.Verzenio has been a challenge as well. I’ve been adjusting to the most common side effects but it’s been a bumpy road. I was recently part of a “workforce reduction” and that has been disorienting. I'd very much like to hear other folk's stories and gain more insight into how y'all are dealing with similar things.
Probably see y’all Thursday.
Catherin
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Hi Catherine! I'm with you...since the intense scheduled treatment is over, I haven't attended a Zoom meetup. Sorry to hear about the workforce reduction. Does that mean you were laid off? I can only imagine how that would feel. I know that working was one thing that I really held onto as "normal" during treatment.
The only treatment I have remaining is my Arimidex and semi-annual Prolia injections. I do have my first post diagnosis mammogram in a few weeks. That's going to feel weird, especially since it's 366 calendar days from my fateful mammogram. Ugh. I'll also get an ultrasound.
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Catherine, it's so nice to hear from you - we miss you (and you, Cyndi!) on Thursdays. And we're so sorry to hear about work, we know that can't be easy. We'd love to see you in group if you'd like to drop in and update us on how everything has been going!
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I just wanted to thank the Moderator . . . last night was my first Zoom meeting. I'm dealing with another breast cancer . . . it is now in my right breast . . . here we go again. Starting Radiation April 17th at Sloan Kettering. . . . I look forward to our next zoom . . . its nice to know that I'm not alone! Thank you again!
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Hi all, red head short hair Kathy.
It was such a great meeting Thursday. I so wish i was not at work and my jerk boss was not there. He is always a time waster and on his phone or on zoom meetings for hours every day. Off site and goes home early. I had to leave thursday and he questioned if i was on the phone when i was supposed to work. I am wasting company time he said. All because he likely saw me laughing, and
I got up a couple times as he listens to what i say. He said he was watching the clock. I wasted 20 minutes. Over the amount of breaks i am allowed. Really i thought? ...........Two days he wrote a letter to the dean that he delivered in an envelope. I know when he does that he is making a complaint about me. The first time he took it to HR. They told him to follow the chain. The Dean first. Well, yesterday the Dean called and asked if she might come talk to me. I said of course!!! The first thing she said was she did not want to speak of what he shared as everyone makes mistakes and that was nothing to make a big deal over. What she wanted to talk over is me and how am i doing. She thinks his stocking up of all my past mistakes or errors is wasteful. Focus on the things you can improve and work on. Focusing on negatives as he does and nursing the negativity will not bring him negativity. He gives speeches. A new worker in our office 30 hours running a new program told me it is harassment on what he is doing and saying. Document it he said. This supervisor has snapped at him as well. He was stunned.The Dean has told me before to not take work home with me. So i jumped on my desktop, changed my pass word, so now i can log in from all my devices. Procrastination defeated!!!!!
I read above about cancer coming back. Darn it I say. Really God. Get her treatment that gets the cancer gone for good.
To the other getting chemo, I had been diagnosed with BRCA2 in Aug of 2021. Immediately in 2 days i went from the chemo every 3 weeks, to Taxol/Carboplatin every week for 12 weeks. In my experience chemo is crazy, but i do not get disability at the college and Covid was in its second year, so I got to work from home. That dreadful supervisor assigned me so much as he thought i was home having fun. HA HA! Chemo brings on tired. I mostly ate Graham crackers and saltines. Crystal geyser water. I was reminded to drink half my body weight in water to flush out that chemo. So i did. I was one who lost 20 pounds. I could not eat the usuals and it has taken a long year to enjoy some foods again i loved. I ate Trader Joes greek yogurt all the time then, now i need to make myself eat it. I did not listen to how others walked through it, every day i felt the feelings. Day 2 was iffy , day three i took Zofran/Compazine for nausea and Senna laxative to keep things moving. Success? Yes, almost no nausea. Constipation. Oh yes. I had one 13 does of the "Red Devil chemo starting with an A. If i recall, your pee comes out a color. Orange? That dose put my blood products at such low levels i was hospitalized for 4 days. I had never been in the hospital. I was hospitalized again for a day in early January, got Covid, so that surgery on the 9th was moved up from April so they could remove my tumor. I was also put on a chemo pill after that 13 dose and once again my blood numbers dove after 29 days of pills. That was the 2nd hospitalization for blood transfusions so i could get home and recover for the surgery. ( It only shrunk 1/2. It started at 5.2.) They felt it would come out with clean margins if they removed it. It did.
Since all of that, I am nearly out of the active treatment. Left breast/ovaries/fallopian tubes removed Feb 9, 2022. December 28th 2022, off goes the right breast. Two fabulous barbie boobs. The right side just removed is causing trouble. I did not wear a correct compression bra. I forgot to say on my one week check, Jan 5th, the hematoma i sent them a picture of a day before wareented another surgery and the removal of the implant and cleaning of the area to ensure no infection set in. Geez. Drains again for 3 weeks. In Feb i think i was just glad to be done with drains!!! Then my non compression bra allowed fluid to build in my last surgical side done. Twice i have had aspirations to get the fluid out. I declined the drain option for the 2nd. Great, i may be bruising my skin with all the pads i have in my right side, but it does not look swollen after a week. The left side with no problems seemed to have a rash which today i was told could be a fungus. Really? Too much squishing going on and little break from bras around the clock.
IT is odd, and I am glad i had a journal and a way to track these couple years. Having all of the women in these online forums and in the zoom forums was a wonderful tool. I never posted on social media and i asked others to not. I told few beyond some trusted souls and only in the last few months have i shared. People want to ask if you have fake parts. To one women recently, I said some things are private. Thank you.
I want to join in now and then to offer support. I was reminded by the geneticist a few weeks ago that i will soon move into the survivors group. No one can guarantee i will not get cancer again, but removing all the parts i have will slow down the Braca 2 mutation. Start working on the 10 points of healthy living and stay on top of all suggested tests and scans as i age. Regular ones will happen for me for a few years, but nothing at all like the last 2 years.
Whatever we do, ask questions and tell the truth. I tell them any symptoms in the portal. Anything odd that is not going away or hurts oddly. I seldom ever have a fever, but i do have other side effects. I forgot to say, that in March i was going to start radiation, as i got an expander in my left breast and the plan was how to fill it as i got radiation. Radiation doctor said he would tell his family not to get it if i was his family. No real help in giving me extra time in life as my cancer is what 2% of the population has and a 2% help by radiation is nothing. Great, my next surgery for the right side was May. BLOOD clot in April. Blood thinners for 6 months and that is whay my 2nd surgery was Dec 28th.
My clot is not completely gone...................... This is why i remain active in the effects of cancer on the body. You will not know your path, until your body lets you know.
Keep coming back.
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Kathy! We were all worried you'd gotten in trouble, or worse, he'd overheard the colonoscopy conversation
It was so good to see you, as always! 0 -
Happy Easter all.
I am grateful I got to see you all. Veronica's talking about foot size is likely where the supv saw me laughing. All of your laughter made the sups comments mean nothing. All of you have been a tool in helping me walk through the last year.
I wanted to say I have documentation and support from my other program coordinator about his harrassment behavior as well. I am grateful to have this 3rd fellow in the office.
I am still giggling on shoe size. I have not talked about it in years. I had wanted to add then when I found some sandals or shoes that fit, I bought +multiples. Costco has had some great everyday shoes for summer.
Today it is about compression bras. As I look at my 2 barbies, they pretty much look the same. Progress!
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k-gobby, we're sorry re. your sup! You are so valued in our groups!
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I’m new here, so I’m not sure what the procedure is, and I’m not sure if this is my group. I am in treatment in that I’m still taking hormone blockers, but I’m past surgery & radiation. I just need people to talk to who are experiencing similar effects. When I started this journey I have 3-4 friends I could ask about their past experiences and what to expect, but at this point my experience is different than all of theirs so I need a bigger pool of friends to draw encouragement from. At the beginning I felt like I had stumbled into a secret group of love and acceptance and encouragement unlike anything I’ve experienced, it was wonderfu, and I needed that at the beginning. I’ve now come to the point in my treatment where I’m feeling kind of alone, so I’m reaching out on the interwebs.
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Hi rs5, We see you posted in the bonded by bc group would likely be a good fit for you!! Give it a try
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Welcome to this group. I think if you share a bit more someone will identify. Hormone replacers. Chemo. Radiation. Stage 1 plus . So many different cancers and side effects. I have found many voices here that I identify with. Some I listen, read and appreciate for the honesty. Being listened to is what we need. Getting encouragement and suggestions is a benefit. Breast Cancer is what brought us together. This common experience gives each of us personal experiences to share.
I am getting another US on my right leg. Take a look to see if the clot is less and allowing blood to flow. I took eloquis for 6 months. 30 days of shots twice a day after my Jan 5th 2023 surgery. A blood clot was nothing I ever thought I would get after surgery.
Crazy side effects.
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Heather, you mentioned trying to find summer tops that hide your port.
I found tops at LOFT (I was wearing the blue one today). It’s sheer so I wear it over the Amazon Basics cotton tank tops which also help cover the port.
Hope that helps!
deanna0 -
Cross posted from this topic: Aromatase Hormone inhibitor “5 year pill” side effects?
Has anyone used these?
cardio-muscular-bone damage?
Tagged:
UPDATE:
I was turned down after having a stress test run to get the stent I believe I need in my left coronary artery which is 50% blocked. 2 other of my coronary arteries are now occluded also.
So disappointed that a heart functioning only 50-55% heart is not worthy of a heart catherization. My angina is being minimized as it could be indigestion. WRONG!
It was determined I would not need radiation treatments at this time but wait until the end of July to see if my cancer has returned determined by mammogram, sonogram, and MRI.
The radiologist did clue me in that a mammogram and sonogram are NOT enough to catch small mm cancer and I should have a MRI as well. I will be sure to press his office to make sure the breast center does another MRI like the first time.
NOW on Day 19 of Letrozole and exhaustion and imbalance is setting in.
I take a supplement of Glucosamine, MSM, and Chondroitin capsule and instead of calcium supplement I believe would further block my arteries opted for a scoup of collagen peptides,
I began physical therapy today to be 3 days a week for at least 1 month to strengthen my legs and improve coordination.
My POTS condition that produces low blood pressure readings always a concern when I have been exercising or get too hot easily.
Does anyone else have coronary heart disease and blocked arteries?
High blood pressure mixed with too low of blood pressure?
Been turned down for stent implantation?
Have trouble falling asleep?
Suggestions?!
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It was great to meet everyone today! Thank you for the warm welcome, and I’m looking forward to getting to know you all. It means so much to have this support 💕
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I've read your posts BaileyBoo.
Praying for your successful treatment and wellness as I do for all on this special forum.
Special thanks to the monitors and guidance here so vital for our continuing improvement.
UPDATE:
I will, after 4 Cardiologists, be undergoing a life saving stent implant on my left coronary artery on May 9.
I thank GOD for His blessing and giving me the perseverance not to give up.
Have another appointment for followup on May 15 with my Oncologist seeing if there is any other preventative measures besides Letrozole.
Also pressing the NECESSITY of getting an MRI as part of my bi-annual screening scheduled July 22 of Mammogram and Sonogram to check if my cancer has returned. Pray that the reluctance of Oncologist to order MRI at this interval versus waiting until December at annual last MRI point.
PRAYING:The Father, I AM:
Please heal us completely!
Please send us caregivers who will be responsive to our needs.
Your will be done. We ask this in Jesus Christ's Name, IESOUS CHRISTOS, I AM. Thank you Father. Amen and Amen.
~ Mabellean
Surgery 1/26/2024
DX 1/2024, Right, Intrusive Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH
Treatment - Letrozole
~ 1 Corinthians 16:13
Final Exhortations
Watch, stand fast in the faith, be brave, be strong.1 -
Hi @mabellean Amen. Wishing you all the strength and courage for your upcoming stent implant. Your faith and perseverance shine so brightly in your post. I'll be praying for a very successful procedure and smooth recovery. Sending all the positive vibes your way for healing and support. 💕🙏🏼
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Oooooo BaileyBoo!
We have a private distribution list of folks who have known each other for so very long.
We do devotionals and communicate frequently as watchmen on the wall.
I'm sure you and the other believing ladies here have similar forces that keep you going onward.
I love this breastcancer.org group so very much as they embody PERSEVERANCE of the saints on earth who live by the grace of GOD following the Second Greatest Commandment.
Keep up the fine work ladies of one foot in front of the other as exemplars who reflect the light of love given to us by our Lord and Savior, IESOUS CHRISTOS, I AM who holds our hand. I love the way y'all stand only possible through the Power of The Cross and Him crucified and rose again in Victory.
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To The ArmorofGOD Distribution List
re: Daily Devotional Verse for Saturday, May 4
And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance;
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WOW! Crying with joy!
LOOK 👀 !
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PERSERVERE PEOPLE, People, people!
The people I have met along this journey GOD propels me onward are the bravest folks I know.
People such as y’all who have come along and supported one another in fervent prayer.
Thank you GOD, I AM for blessing me so very much!
Love,
~ Mabel Lean, a member of the ArmorOfGod Distribution List
<*}}}< John 17; Romans 8; Hebrews 11; Acts 17:11; Colossians 3:1-17; 2 Timothy 2:12; James 5; Revelation 21-22
The Task of A Watchman
A watchman's story
https://watchmenonthewall.locals.com/post/3578546/the-task-of-a-watchman
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UPDATE:
I underwent two breast surgeries in January of 2024 (1/12; 1.20).
The second surgery the pathology report came back "clean margins"
- Am I cancer free???
The radiologist I was referred to as a consultation by the oncologist I was referred to by my breast cancer surgeon told me to BE SURE I was cancer free I should have all three types of screening bi-annually to check to make sure my cancer was gone and remained clear.
- 3D Mammogram
- Sonogram
- MRI
However the oncologist is now refusing the request I made he issue a formal letter to the Breast Center Screening facility to get a MRI bi-annnually (scheduled July 22) as well as the scheduled 3D Mammogram and Sonogram.
GIVEN the TURBO Cancer Rates that have skyrocketed it is entirely possible I could go go from "clean margins" in January to Stage 3+ in December of 2024. An annual MRI Screening is unacceptable and unconscionable.
keywords:
" turbo breast cancer rates on the rise mccullough "
- Anyone else encountering this kind of PUSH BACK?
I even stated I was MORE than WILLING and ABLE to pay for the July MRI.
I was told making that request is "unethical."
WHAT???!!!
~ Mabellean
Surgery 1/12/2024; 1/26/2024
DX LCIS, DCIS, 1/2024, right, Stage IA, Grade 2, ER+, PR+, HER2+, ISH~ Mabellean
Surgery 1/12;/2024; 1/26/2024
DX 1/2024, Right, Intrusive Ductal and Lobular Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH
Considering Treatment Options → * NEED: MRI Bi-annually along with 3D Mammography and Sonogram
~ 1 Corinthians 16:13
Final Exhortations
Watch, stand fast in the faith, be brave, be strong.0 -
UPDATE:
I was able to testify in ourConcord Presbyterian Churchof the miracle ofOPEN!Concord Presbyterian ChurchTo HearGOD's WordAnthem: A Time For Everything are. M. HayesNew Testament Lesson:Matthew 16:1-4Sermon: "Signs of the Times"Mark 7:31-37Man Is Healed"Ephphatha."That is,"Be opened."Mark 8:1-13Four Thousand Are FedPharisees Seek a SignThe veryAscension SundayfollowingAscension Thursdaymy life saving difficult stent implantation of my grafted left coronary artery from90-100% blocked to 0% blockage.(Previously I almost passed out unconscious in church the Sunday before my Ascension Thursday procedure but by His grace was able to walk out of service.)Dr. Malcolm Foster III, (Vanderbilt Alumni)Tennova Heart Team. Ascension of Saint Thomas Hospital Associates, Turkey Creekperformed in theHeart Catheterization Laboratory, Thursday, May 9, 2024.Praise be to GOD!
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Hi y'all! To the BRAVEST Ladies I know!
UPDATE
Switching off Letrozole at my insistence because it is devastating to my delicate cardio health given 3 of my 5 coronary arteries are blocked and I have POTs and Angina.
I suffered from these extreme side effects:
1. Extreme exhaustion
2. Afibrillation
3 Nausea
4. Muscular-joint pain
5. Higher lipid count
6. Raised out of controlled range Blood Glucose A-1C levels previously balanced
7. Extremely wide ranging high to low BP swings. Diastolic plunged many times to under 50 causing dizziness just shy of unconsciousness
8. Angina frequency increased to daily and grew more intense in pain
Going on Tamoxifen for 1 month trial to see if my system can be sustained given the extreme strain of added medicines that carry lethal side effects.
What is unconscionable is the oncologist still refused to write a letter to the Breast Cancer Center to the effect I must have for early detection a PET-MRI scan along with the planned 3D Mammogram and Sonogram scheduled at the Bi-annual appointment July 22 to see if my margins are still clear of the invasive duct and lobular cancers.
I have stated and will legally sign to the effect if insurance will not cover the scan I will open my checkbook on the spot.
Hopefully my GP can once again intercede to save my life by referring me to a cooperative oncologist who puts the patient’s individual needs over the mass treatment modus operandi.
My GP previously arranged for me to see put under care of his personal cardiologist who placed my 11th stent in my blocked left coronary artery bypass.
He was the only cardiologist in a series of 3 others with the skill to accomplish this delicate procedure where the others walked away.0 -
UPDATEOn Night 5 of taking Tamoxifen and experiencingside effects of night sweats and leg cramping.Taking right before bed (10 PM).When is the best time to take this hormone blocking drug to avoid insomnia effects?There are no directions on the packaging labeling directions as to best time of day.Morning?
Afternoon?
Evening?
Before going to bed?UPDATE
Getting MRI June 1st!
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Comment found here:
https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/184682/neuropathy-associated-with-tamoxifen/2031343
'I wonder if there is anyone out there who is also experiencing severe numbness and chronic pain in their feet and legs after taking Tamoxifen..."
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Yes! Day 15 on it and getting these symptoms as you have already.I tried Letrozole for 1 1/2 months and was very drug sensitive to it and had to stop because of side effects.
> *Letrozole Aromatase Hormone Inhibitor was far too detrimental to my cardiopulmonary limitations amongst other extremely harsh side effects.*
> *1. Extreme exhaustion*
> *2. A-fibrillation*
> *3 Nausea*
> *4. Muscular-joint pain*
> *5. Higher lipid count*
> *6. Raised out of controlled range Blood Glucose A-1C levels previously balanced*
> *7. Extremely wide ranging high to low BP swings. Diastolic plunged many times to under 50 causing dizziness just shy of unconsciousness*
> *8. Angina frequency increased to daily and grew more intense in pain*
> *9. BUN and Creatinine Levels now ranging high off normal.*
Now trying Taxoxifen but this will not work out either apparently. Only on a 30 Day Trial.
Stopping tonight at Day 15.
Tamoxifen Side Effect Neuropathy
https://search.brave.com/search?q=tamoxifen+side+effects+neurpathy&source=desktop&summary=1&summary_og=cd1979ab4746130ef43ee0
~ MabelLean
Surgery 1/12;/2024; 1/26/2024 DX 1/2024, Right, Intrusive Ductal and Lobular Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH
Treatment → * NEED: MRI Bi-annually along with 3D Mammography and Sonogram
UPDATE: June 1, 2024: MRI Results → * NO Cancer Reoccurrence!
~ 1 Corinthians 16:13 Final Exhortations Watch, stand fast in the faith, be brave, be strong. 🛐0 -
Crosspost from here:
mabelleanMember Posts:296:58PMOptionsCONGRATULATIONS bcicolorado!Hope this is STILL an open thread such awonderful subject !Here is our UPDATE and soon to be our 41st wedding anniversary and our Border Collie, Mabel Lean is 11 1/2 and still runs with all 4 paws off the ground. JOY! Unspeakable JOY is her smile and wag, wag wagging tail!Heart SurgeriesTotal of 10 Stents of Multiple Cardiac Catheterization Procedures - implant procedures culminating in approximately 2015 Concluded stents implants by 5/2018 with CABG; Stent #11; → * UPDATE: Left Coronary Artery Bypass implant 5/9/2024 → * 90% Blocked to 0%!Cancer Surgeries1/12;/2024; 1/26/2024 DX 1/2024, Right, Intrusive Ductal and Lobular Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH Treatment → * NEED: MRI Bi-annually along with 3D Mammography and Sonogram → * UPDATE: 6/1/2024 → * MRI Results → * NO Cancer Reoccurrence!~ 1 Corinthians 16:13Final Exhortations Watch, stand fast in the faith, be brave, be strong. 🛐~ MabelLean
Surgery 1/12;/2024; 1/26/2024 DX 1/2024, Right, Intrusive Ductal and Lobular Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH
Treatment → * NEED: MRI Bi-annually along with 3D Mammography and Sonogram
UPDATE: June 1, 2024: MRI Results → * NO Cancer Reoccurrence!
~ 1 Corinthians 16:13Final Exhortations Watch, stand fast in the faith, be brave, be strong.🛐0 -
Hi Everyone!
I hope all of you are on the mend and doing much better.
I think of you all in prayer every night as I go before The Throne in my "prayer closet" kneeling before my bed.
We had a wonderful sermon today at our church on discipleship I simply must share in part I posted on another forum on this subject matter:
ENCOURAGE
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Why is encouragement so important according to the Bible ...https://www.gotquestions.org/Bible-encouragement.htmlEncouragement gives hope (Romans 15:4). Encouragement helps us through times of discipline and testing (Hebrews 12:5). Encouragement nurtures ...How can we encourage one another to love and good works ...Loving others well and doing good works is a tangible way to reflect the light of Christ in this world. We must take seriously the instruction ...How are we to exhort one another daily (Hebrews 3:13 ...https://www.gotquestions.org/exhort-one-another-daily.htmlWhen we get together, I want to encourage you in your faith, but I also want to be encouraged by yours” (Romans 1:11–12, NLT). Mutual ...
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Hello Melissa, Mods, Tuesday Group, and Any and All Others in the BC.ORG universe. I know we just wrapped up our group a couple hours ago, but I just got results from my CT Scan and wanted everyone to know that it showed "post-surgical changes" and "radiation changes" but no new masses. Whew! Now on to my lymphedema PT to try and work through this pain I've been having. Thank you all for your continued support, compassion, empathy, and encouragement! :-)
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@ctlovesdogs - EXCELLENT news!!! We are so happy to hear this update!
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