Can we have a forum for "older" people with bc?
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True religion is real living;
living with all one's soul,
with all one's goodness and righteousness.
- Albert Einstein0 -
Welcome Gleason. Please feel free to come and share after you have checked out the thread MCBaker provided. We jump in pockets easily here.
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Welcome Gleason.
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Gleason - Welcome to the club none of us want to join. If you go to profile and check public after each entry, we will be able to see your diagnosis and treatment plan and help you more.
I was 70 when I was diagnosed. Had already had achelies heel and carpal tunnel surgery and lots of arthritis. Since then I have also had a knee replacement. Joint pain is a frequent complaint on chemo (you didn't say what you would be getting). Try generic Claritin (non-D). I also do Calcium with Vitamin D and gloucosimine and chrondrotin. My MO added turmeric. Many MO's use gaberpentin for neuropathy and my neurologist upped the dosage significantly from what MO prescribed. I didn't need a walker except after the knee surgery. I did buy a cane with a fold down seat for times when I would be out for a long time. (I had expected to take it with me to Egypt this spring but of course that trip didn't happen). I did take it to the Jan. Women's March. I like the idea of hiking poles that was suggested on the other thread. Plan to walk as much as you can.
Since you are TP, I assume you will be getting Herceptin. I had no trouble with that but it is a long slog. I was glad I had a port put in but that certainly is a personal choice. I also recommend that you join a thread that says "starting chemo Oct 2020". My group was fantastic. We had a private Facebook page and laughed and cried together. Still check in occasionally 4 years later.
This group of "older" women are chatty as you can see and we will try to support you in your journey.
Good news, Puffin. Sandy, did you ever get your final path report? Or did I miss it?
Have a safe weekend everyone.
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Taco1946: So sorry to hear you did not get to take your trip to Egypt as planned. We planned our trip (land and Nile cruise) for early January so we did get to go. It had been on my bucket list since a previous trip was canceled due to political unrest in Egypt many years ago. It was a bucket list item so I was glad that I was able to cross it off. I am hoping that you will get the opportunity to complete this in the future. I will advise you that if you decide to ride a camel, which I did, it is not until they stand up that you realize just how far the drop to the ground is. They are notoriously cranky and bite so when the one behind me kept coming up to sniff me I will admit it was a tad scary. The rider behind me was a young teenager who kept teasing that the was camel "in love" with me and I just kept talking to him as a distraction. Dismounting is fun as well since they lower their front legs first so you have to lean back to avoid pitching over their heads. I do not regret taking the ride for a minute but have to admit it was not a well thought out plan. It was everything I thought it was going to be and then some including a (long ride) side trip to Abu Simbel.
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Good morning, ladies. Husband and my little cat woke me up too early to tell me the President and First Lady have tested positive for COVID-19. Now they are back to sleep. Funny how that happens. 59 degrees this morning. It certainly has been pleasant. Yesterday, I went to breakfast one of my friends and we took a nice long walk. It was wonderful. This is laundry day, so nothing planned for today. Everyone have a pleasant day.
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To know what you prefer
instead of humbly saying Amen
to what the world tells you you ought to prefer,
is to have kept your soul alive.
- Robert Louis Stevenson0 -
Very cool here this morning. Definitely a sweatshirt day. I feel for the outdoor kitties, but they often do bundle up together. If the sun is out and I think it is, they seem to warm instantly. If they sit in the sun and you touch them their fur is warm. They are able to attract the sun's rays to warm themselves. I will feed the feral cats in whatever sunshine there may be.
Sad that Trump and Melania got covid, but perhaps it will help with disseminating info to others as to their behaviors. I will be thinking about all here and hoping that you all stay well and safe -- something I've hoped since this terrible disease process reared its ugly head. Almost time to go get our flu injections. The V.A. waits just a bit since you will be covered for sure during the coldest months. The protection lasts about a yr. but starts to wane somewhat as time passes, so that is why they don't rush in immediately to give the shots. There were yrs. that I 'forgot' to get my shot but stayed well with no issues. At this point -- no way do I want to go without.
Wishing you all a wonderful day and definitgely wishing you well and that you stay that way.
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To get the best results from a flu shot you should not get it any later than November 1. Flu season is nominally from the beginning of October to the end of May but it depends on the weather, where you live, immune status, the population density and a host of other factors. The virus evolves over time so the virus we see early is not necessarily what we see at the end of the season which is why it is always a combo type vaccine mostly based on last year's experience. I urge you to get the flu shot and no, you do not get the flu from the shot. It is not a live vaccine and anyone who claims they got the flu from the shot unfortunately was already exposed and/or incubating at the time they got the shot. It also can take up to 2 weeks to develop sufficient circulating antibodies so protection is not immediate. Mask wearing is a blessing in this case because it will help get us through that 2 weeks.
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Puffin - my oldest daughter developed ovarian cysts in high school. One ruptured then another grew back so gyn put her on the pill.
Gleason - sorry you have to join this club, but glad you found us. No pain from chemo or Neulasta, but I did have awful joint pain on AIs. Wishing you an easy time on chemo. I'm 14+ years from stage 3 ILC diagnosis.
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Betrayal - so glad you got your trip in. It's been on our bucket list for years too but...Most frustrated for this VERY long wait for our refund. We were supposed to take a sailing ship through the Panama Canal in Nov. but obviously that is out too. Right now I'd just like to able to fly to Maine to see our daughter.
My second shingles shot and my flu shot are scheduled in two weeks. I generally wait until Thanksgiving for longer immunity into the spring but am worried that there will be a vaccine shortage this year.
On the west coast, we heard about the Pres. last night. I am sorry for anyone who gets it but am a firm believer that one can and should miminize risks to self and others and that obviously hasn't been happening. The fundraiser in New Jersey after Hicks had tested positive was criminal. Sounds as if the Senate will soon be a "hot spot" too.
Will 2020 ever be over!.
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Better get that flu shot now--at CVS the NP told me Sunday he had only 4 doses left. I get the high-dose quadrivalent version. I think that masks, social distancing, and frequent hand-washing will make a dramatic difference in this year's flu season.
Not having any schadenfreude (an emotion to which I confessed on Yom Kippur, and promised contrition) over the First Family (except Barron) getting COVID--as well as Hope Hicks, Mike Lee, Thom Tillis, Kellyanne Conway, etc. (I want the voters, not God, effectuating "regime change"). I'm actually saddened and scared to see how easily and quickly it spreads--thus endangering everyone who works at the WH and the Capitol, from the Secret Service (who by definition cannot social-distance from their assigned protectees), drivers, pilots, cooks & janitors, as well as the WH press pool. It's super-sobering how many in the line of Presidential succession have been exposed. More than that I won't say in this thread.
No word yet on my path report, but I'm not gonna nag--it won't make any difference in my treatment. The real prognostic indicator will come at my next ocular-onc appt. in mid-Nov., when he can see how much the tumor shrank (hopefully, it can be as much as down to 40% of original size, with the remainder having been rendered inert and thus "dead"). Progression-free survival chance at 5 yrs. after brachytherapy is 90%.
Got a huge surprise in today's mail: my new progressives from Warby Parker (it used to take 10-14 days, but it's been less than a week; having a lab in NYS makes a huge difference for those of us east of the Rockies). The new prescription is definitely taking some getting used to: the frames are small-ish, so the distance-vision portion of the lenses is smaller and narrower than I'm used to. But the middle and even reading portions are dramatically better than the previous 'script. It can take a few days to even 10-14 days to become fully acclimated, but they urge wearing them full-time to accelerate that process. The new shades are coming tomorrow, and the readers & spares should also arrive fairly soon.
Here's the new pair ("Daisy" narrow, in purple marble, aka "violet crystal." These frames are made in Italy, not China):
My R eye is bigger than it looks in the pic (the side lamp is making me squint slightly). And the angle makes my sweatshirt (and my upper body) look a mile wide. Dunno why--on Zoom calls, it doesn't!
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Good evening everyone. Today was so nice as I met a fellow BC sister survivor for lunch at a sweet little cafe with outdoor searing. Beautiful breezy weather and good conversation, masks on except when eating. I don't do this much yet so a real treat. Our two kitties loved it as they get to curl up and sleep all day with no distractions like me cleaning.
Stopped at the organic market on the way home to pick up essentials, a store I enjoy shopping at. An evening headache or beginning migraine makes me think the weather is changing and I didn't drink enough today. So I took some meds and will read a bit before sleep. G'night all.
Petite my husband woke me up at 6 to tell me about the news also.
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Sandy: Your glasses are lovely and I wish I could see the frames better since the color sounds interesting. No news is good news, so hopefully your delayed path report is just that, good news.
Taco1946: We had a month long trip planned for July that included a cruise of Norway and the fjords up to the Arctic circle followed by a 2 week long land tour that started in Amsterdam. The tour included parts of Germany, Austria and Switzerland. We were disappointed as well since it had been in the works for over a year.
They finally started restoration on our house mid-July after we had been waiting since November for them to do so. There was extensive damage to 3 levels so we needed a structural engineer, there were a large number of homes in this area heavily damaged by the same storm and our home was still partially habitable so we were sort of last in line. We are coming up to the first year anniversary and still do not have our home fully restored. To make matters even more fun, the finished basement had sustained some damage in November but then the tail end of the hurricane caught us with no gutters on the house (removed to replace roof structure) and a resultant basement half-full of water. The water coming off the roof looked like Niagara Falls and completely overwhelmed our exterior underground drainage system. Normally the gutters would have drained into this and we would have been fine. Even the sump could not handle it. So now we have a major repair in the finished basement as well since the flooring was destroyed as were a few walls. The flooring is no longer produced so we now have evolved from a patch job (minimal damage in November because we still had gutters) with what we had leftover from the initial installation (just enough) to a total gut and entire replacement of the flooring.
Today the carpenters told me they were going to replace some of the basement underlayment and I told them "no" that until we had one construction zone finished, they were not to start another. They need to finish the attic so we can offload what is in the garage back to the attic. Then what is in the basement can be moved to the garage. We are talking the contents of 2 office spaces, an electronics work bench area, a TV seating area complete with a kitchen/bar area, and my sewing area. A lot of items from the master bedroom and living room are stored down there because they were fragile, or expensive to move offsite such as my Hummel collection and Waterford pieces. They were not stored where the basement flooded fortunately. So each room in the house is acting as a storage area for items from other rooms and I feel like we are living in a storage unit. Unfortunately our insurance company would not move items to offsite storage, refused to pay for it if we did, and told us that we would have to have a separate policy for coverage of those items. So we did not feel offsite storage was secure and not realizing how long the wait was going to be (11 months), decided to just live with it and live with it we have. We will be glad to return to a normal home at some time in the near future. One can only hope.
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OMG, Betrayal--you are a saint for keeping your cool, at least on this forum. Your restraint is amazing--I'd be cursing like a sailor whose boat just sank and could barely dog-paddle to the shore of a deserted island. I hope your nightmare finally ends soon, and all your rooms could be used for their intended purpose--simultaneously. Insurance companies are, alas, a necessary evil--"evil" being coequal with their "necessity."
Here's a closeup of the frames:
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Sandy, love the glasses.
It is a little warmer 63 degrees. I am meeting a friend for lunch - outside seating. I am looking forward to it.
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Puffin, thanks for sharing good news.
I am writing this post as I sit in my chair at home in Louisiana. We arrived home yesterday afternoon about 4 pm. We were blessed with great travel weather for three consecutive days.
Today will be busy with unloading the cargo trailer and settling back in. We appreciate the "cool spell" and wish it would last.
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"You see, we are here, as far as I can tell, to help each other; our brothers, our sisters, our friends, our enemies. That is to help each other and not hurt each other."
-- Stevie Ray Vaughan0 -
Sandy: Thanks for the closeup of your new glasses. The frames are gorgeous.
I do lose it on occasion when I am feeling overwhelmed either by the wait for the next tradesman or if I am not satisfied with what they are doing. I very carefully explained to the restoration company and to my insurance agent that I was not seeking more than what I had originally but was not willing to accept less than what I had. So this has lead to some voice raising, carefully enunciating my expectations and making sure I get what I expected. The project manager is not always onsite so the head carpenter works well with me on most days. I correspond with the PM with my expectations, the unfinished jobs list and things he has forgotten to do like we still do not have the bathroom exhaust fans exhausted to the outside: who will do this? Yesterday was the exception when I told him under no circumstances was he to start anything in the basement.
The MBR shell is done but the closet needs to be disassembled so they can rip out the hardwood flooring and reinstall it. One worker had put his foot through the ceiling so that was repaired and the whole closet will need to be painted (not just the ceiling). The gutter guys put a nail/screw through the exterior wall which pierced the juncture of the wall/ceiling in the MBR bathroom so this room will now need to be painted after they repair this breach. It originally only needed the marble sill plate replaced because it did not survive a joist or roof truss hit.
The exterior is complete except for reinstallation of the shutters. So new roof, new 6" gutters and larger downspouts, and new siding. We put up the last of the window boxes we had purchased last weekend and I just bought mums to put in them. So from the outside we look good, the chaos is indoors. Next week the insulation guys will be here to remove all the old insulation, put in the new (no loose insulation) batting and then the carpenters can install the plywood flooring we had originally. I am hoping we are done by Christmas since there is still so much to do on the interior.
I retired last December to be able to relax and volunteer as I saw fit, not to become the in-house unpaid project manager and I did share this with the real PM when we had words. I was pissed and made no bones about it. He got the message and his attitude has improved as has his communication about when workmen will be here and what they will be doing. I love weekends when I can sleep in and do what I want. Have a good weekend all and enjoy the weather. We are having cooler, sunny days and that makes me happy.
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Gleason- welcome to the club, so sorry you had to join.
Yesterdays news, being night owls, I heard it before I went to bed Thursday night. COVID in the WH- it was bound to happen sooner than later.
Petite1- 51 here, our heat kicked on. But it is sunny so I'm thankful for that.
Carolehalston - glad your trip home went well. Now to unpack and regroup.
Betrayal - I'd have to leave. I know me and I know with that much upheaval over such an extended period of time, it would stress me way too much. You're a trooper!
Sandy - those glasses look cool.
I had my yearly eye exam yesterday. New covid rules, temp at the door, seating sparce. The Dr was running way behind, 1:45 apt got me in at 2:45. No tech, Dr did all exam & drops to dilate. 20/20 w contact lenses, so all good. It was rainy early in the day, dark & gloomy, but you know as I left squinting w my dark sun glasses on it was sunny as could be! Murphy's law.
We're going to get our flu shots today. Maybe take a drive. Not much planned for the day. Enjoy your weekend ladies.
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Went to the podiatrist yesterday. She trimmed my toenails, and paid special attention to my right big toenail, which is ingrown. I had already gone to a nail shop to get the double thickness trimmed down, but she did it some more. She said the problem will resolve itself in a few months, as the last of the chemo nail grows out. It feels much better. I soaked it in hot-to-cool Epsom-salt water for a few hours. She said that as far as the midfoot arthritis in my left foot goes, so long as I have good arch supports (she gave me a new pair) and use my hiking poles, it may never get to the point where I would want surgery. Just need to keep my weight off of them-- with the poles, I am not overweight.
I am eager to get the rest of my chemo hair cut off. I will be getting it cut short on the sides, and permed on top. My hair has been curly for so long, I want to stay with it. A great wash-and-run style.
Housecleaning and laundry today.
Sandy, I am also working hard at banishing gloating thoughts at Trump's illness. If he were to die, things could get worse.
Betrayal, your tribulations with the house problems are a painful read. One thing on top of another. I put a hole in the wall in the hall into the community room several months ago. They still promise me that it is going to be repaired. My comment that it is a reminder to me that I sometimes do stupid things probably isn't helping things.
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Thanks for the sympathy ladies about my housing restoration woes, and thanks for listening to my gripes. When you have an elderly dog who will be 12 in November, 3 cats and once 3 but now 4 parakeets with the hatching of that egg back in July, moving out was not an option. Especially with Covid and the length of time we would have been out of the house. The dog has glaucoma in one eye so she is blind on that side and familiar surroundings are important to her. She is a bit out of sorts that we are not able to sleep in the MBR especially in the middle of the night. If you have cats, you know that they will sleep just about anywhere especially if you don't want them there.
Plus we have to be here when they occupy the house to ensure our belongings are safe and to answer questions. Yes, they are bonded but once gone it is hard to get one's belongings back. I have been able to find some items, that were either destroyed or disposed of by the guys who cleaned out the MBR debris, on Etsy and that was a pleasant surprise. I would like to have my house back when it is restored to its former state and to not hear pounding, saws buzzing or tons of dust that seems to invade every crack and cranny. It also helps that I can address any issues with the workmen before they leave at the end of the day or the job.
Have a nice weekend. We are trying to get some yard work done and enjoy the weather.
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Hi all, and to Gleason who also seems to be new here. I'm old (67) recently diagnosed with MBC, and trying to make sense of my shredded life and the very strange locked down world I find myself living in, all at the same time.
Every dream I ever had for retirement has been crushed like a bug on the windshield, personally and globally.
I'm supposed to get dna tested and bone tested, but haven't done yet because they're just such an undertaking getting to the facility, getting through security; all the while being treated like Typhoid Mary anywhere you go.
These lockdowns are absolute madness. I probably won't get covid but I am sure to die of breast cancer, which I can barely get treated for all the roadblocks in the way.
Absolute madness.
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PNW Sorry to hear that your in such a struggle. Having cancer and lockdowns really don't go together. I was fortunate in the second bout of cancer ( new primary ), first bout breast in 2007, then 2020 Ureter cancer. Strange place but no one asked me if that was ok. I figure it could have been worse. My fortune ( despite having some weeks of waiting just to begin the testing ) was that it turned out to be a low-grade cancer so didn't go anywhere. Hoping further tests which will be done later show I'm still in the clear.
Betrayal, excuse me for not saying -- despite all you get put through, your rants are fine and deserved. If that is what it takes to keep your head about water -- rant away. I read you post and lost it later. I do that all the time. I do hope that these guys can get on the ball for you. They may be frustrated lots of times as well -- but at least they get a paycheck to help soothe it. All you get is a rant -- so that's what we are here for.
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Welcome PNW to the club no one wants to join. I had lunch on Friday with a good friend who was diagnosed Stage IV (de novo) almost 2 years ago. She is doing very well, particularly after the shock wore off a little. Any feelings you're feeling are just fine. We're all here for you.
Reader
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PNW, forgive me. I meant to say welcome to you as well and totally blew it. Plese come often. It's a great group.
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PNW -not what anyone wants to hear. Glad you found this thread of really supportive ladies. My BFF was diagnosed stage 4 at 67 and had a very full and fulfilling 5 years. Travel, weddings, grandchildren...She always had a "I want to live to do____. The first one after a June diagnosis, was to vote in the 2012 election to cancel out a friend's vote. She voted in 2016 too. She loved to go to the casino and as two couples we traveled at least once a year. So don't put your retirement plans on the shelf! Anne is my roll model and heroine. I try to follow her approach to life and death always. Stay close.
Taco
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Jackie: Thanks for saying my rants are fine. It helps to have a place where you can rant as needed. I don't want to take over the boards but some weeks are more stressful than others and you just need to get it out. Hopefully next week will be better.
PNW: welcome and this is a great thread to visit. None of us really know how many years we have so hang in there. You've got this.
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PNW, welcome. We are a good supportive group, no matter what the issue.
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You are a child of the universe, "fearfully and wonderfully made."
In the history of creation, there has never been anyone like you.
Accept this reality about yourself—that you are a special, unique
human being who has a place on this earth that no one else can fill.Acknowledge yourself as a glorious expression of your loving Creator.
This healthy self-love will form the foundation of a joyful and
satisfying life. Then, as you love and accept yourself, your inner
light will shine outward to bless and heal your fellow human beings.
Douglas Bloch0
