STEAM ROOM FOR ANGER
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good one wrenn.
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exbrnxgrl and all who replied to the “ta-ta’s” post, thank you for commiserating with me about this! Your tickle the testes line actually made me laugh out loud. I was actually thinking along similar lines, funny how we don’t see the same for, say, colorectal cancer.
Kidi, this points to your sexiness point about all of this… pretty sure if I plastered a photo of my post BMX chest after surgery on a shirt, THAT would be received in EXACTLY the same way! >_<
As a relative newbie to this “club”, it felt risky for me to post about that, so all of your support is so appreciated.
NoPink, we in the younger generation stand on your shoulders, so thank you for this reminder that having this community was fought for and created by women and folks like you. I was a little girl when my mother was diagnosed in 1988. Our family was extremely private about it, and she had to travel an hour and a half to a nearby city for her treatment, even though we didn’t live in a particularly tiny town.
Wrenn, your post was profound. It gave me chills.
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FTD is frontal temporal dementia. My form affects my speech and is call logopenic primary progressive aphasia. (lvPPA). Mine has none of the behavior issues as some of them but memory and my words. You lose what is called "executive function" and since I worked in mortgage office with lots of figures and paperwork and involved talking can't do it. Can't drive now either since can't make decisions and react fast enough to do it.
Love your screen name ineedacupcake!
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Hi bc, thankfully you can type really well. I hope you have very very slow to no progression.
Kidi, sorry about your friend. That does suck. I only have one or 2 people ask about where I am and how I'm doing. I just had a visit with the MO which was fine and got my Prolia shot. He noticed me moving my left hand around a lot so I told him yeah it hurts. I guess I'm used to just tolerating my aches and pains and I really don't know if it's from the AI or just old age. He did put it in his notes, and now that I read that, the damn hand won't stop! That's just how my mind works, need to try and not think about it. June or July of 2023 will be 5 years and I will quit this AI. I don't want to know my risks, or take any risk tests either. I'm done with this pill. I'll just take my regular monitoring tests and whatever happens, happens. Trying to live my best life in the mean time.
Down at the bay cottage things are still moving slowly. I have 2 sinks working. My electrician brother and I put some light fixtures up and all the outlets and covers. The back little bedroom in still a bare nothing. That's where all the tools and scaffolding are. Hopefully we can get that monster thing out of there this month and we can get walls and ceiling up in that last room before season's end. It does make me happy, but also sad at times. My husband's sister who is also a widow just quit her job, sold her house, and drove here from Wyoming. Talk about flight mode. She has 4 grown kids and 3 grand kids. She is staying at sister in laws house. I visited and invited her down to the cottage, and she said no. I don't get this. It's fine with me, except for the fact that my other sister and brother in law who have been a great help to me are now catering to her and not helping me. The cousins that are down there also feel a bit slighted as they thought she would want to see them. I realize my sister in law was looking forward too spending time with her sister. She flew out there and rode back with her. Now that it's been a week, I will give it more time and see what happens. Strange family, you would think they want to stick together and see other family, but this one isn't like that I guess.
Take care all, only drop by occasionally, cause yeah Site format still stinks!
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Middle room. I put gray stain on the one wall, and the other walls are pergo flooring that my husband had laying around.
Front room floor
My son, he's doing it all.
bathroom light. Both of these have been in a box for 2 years. Finally can use them.0 -
ctmbiska thank you. I work on words every day and often can type even slower now even if I can't speak out lout. We play charades sometimes at home even. Since we've been married 40 years now DH knows what I mean at least or if I say a wrong word for something (that happens too). Some people die within 7 years of being diagnosed but some go 20. We are pushing for 20 if we can and fighting it like I do my cancer.
Love your photos too!!! You have been doing so much work and know you will be glad to get it all done with at some point. You have worked so hard on this and had so many problems along away both with your own health and with family. You deserve some happiness.
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ctmbsikia - I love the work that you and your family have been doing, it is going to be amazing when finished. I love the bathroom lights, they are unusual and seem to be perfect for a cottage.
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ctmbsikia, wonderful pictures! When doing construction, it always takes longer than we think it will. Good luck with the family. Me and my sisters just got back from Salem Ma. Nice trip but traffic was a nightmare.
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I feel like such a ish this morning. My sister and I had planned to go down to the cottage this weekend. When I reached out via text she didn't answer. I sent another text requesting that she just answer yes or no. She does that sometimes, doesn't answer and it upsets me. She finally replied and said doc called regarding her latest scan and bloodwork. Hemoglobin count is real low -she's going in for a blood transfusion today and she will be going back on Ibrance as well. She had been off of it for just over 1 year, that stuff really worked on her bone mets. I guess this means there is progression. All I could do was apologize for not asking how she was instead of being the overbearing demanding sister that I am, and wished her luck. I will call her Sunday. Jesus, I'm such a schmuck!
I really need to sober up and be more considerate of others. I'm so lonely, angry, and hate being hungover. I feel so good on the days I do not drink I don't know why I do it. It's stupid! Must find a better way of dealing with everyday stress and maybe my hair will quit falling out!!!!!
Anyway, here's a pic. My son and I were there last Sunday. Gray stain on the ceiling. I really love it, but this mission is killing me.
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ctm, I have a sister and we "get it." Sometimes, we call each other just to bitch about something. Our joke is when one of us says, "OK, can we talk about me now?"
Cut yourself some slack. Your ceiling looks fabulous!
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ctmbsikia I am so sorry about what is going on. You want to be able to support them but also have to take care of yourself as well and be healthy which might mean not drinking since you said it is bothering you. We are here for you always you know. Hugs to you.
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Spoke to my sister last night. She does have progression of bone mets and she received 2 units of blood on Friday due to low red blood count that was steadily dropping. She said she had been feeling tired and was getting short of breath just doing little things. The transfusion helped and she will be going back on Ibrance real soon. She was OK and just said, it is what it is. What her MO thought was going to be a 3 to 6 month break (from the last cycles of Ibrance) has been over 1 yr and 1/2 break or her. The last bone scan started to light up but not enough that they recommended she re-start this treatment. This most recent one however has lit up new areas. Sucks!
She and my brother in law are going to the beach for a 2 week stint in September, something she had looked forward to now that her kids are all done college. Brother in law's father and I share the same birthday. He is turning 100 this year. I bought him a card to send. So crazy, I never shopped for this type of milestone card, nor have I known anyone personally to live that long.
I will check on her from time to time to see how's she's doing. I'm glad she has a rental at the beach for 2 weeks that should help her mentally get back on the schedule with working, taking pills, getting blood work, and seeing the doc more frequently. I feel bad that I complain about appointments, but they still stress me out!
I managed to get the shower curtain up at the cottage with this stupid pipe hanger thing I found in the shed. I finally started to clean up my basement at home from doing all sorts of little projects down there. I organized stuff that is going to the cottage and am about 3/4 of the way through cleaning up cob webs, wiping down stuff and running the vac. Wonder if I can fit a twin size mattress in my car? That's what I'll try to figure out after work today. Better get back at it. Thanks for listening. Here's a pic of the curtain.
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Wow! Someone living to 100 is pretty good. I did see a story on the news over the weekend about some farmer who still was what he called himself "a windshield farmer" and got out every day and walked in in his fields and hired people to do the physical work he can't do right now but did all the "managing" of the farm of 100 acres or more he owns and is 105!!!! Goes out every day and said keeping moving is the only way to keep going. He was inspiration to me definintely with my own aches and pains.
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My Dad had an aunt who lived to 104. She was independent until very near the end. After she got kicked out of an apartment for playing her stereo too loud when she was about 100, she bought a house. The atmosphere in that area must be good: my grandmother lived to 90, grandfather to 94, Dad to 93, his sister to 96, my Mom to 97, and one of Grandma's brothers was 95. Grandpa still lived on the farm after Grandma died, and only left it to visit another daughter in Florida for the winter, and that's where he died. His body must have missed the daily hilly walks on his land.
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Aunt Flo passed away at 100, at 60 she was diagnosed with breast cancer she had lumpectomy and radiation. She didn't have hormonal therapy not sure what the hormone status of her tumor was.
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That is amazing as well.
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I just want to rant a little about doctors who tell people with breast cancer genes that they catch breast cancer early and cure it with constant monitoring. It's not a lie perse but it is misleading thanks to all the positive hype out there about breast cancer. Yes, we've got great drugs right now that have made a huge difference in the diagnosis. And certainly catching breast cancer early is a good thing. But even early stage people relapse. If you get breast cancer you will always have that possibility. It's a weird cancer that way. Your cancer isn't considered cured until you die of something else so monitoring helps assuredly but don't tell patients they'll be okay if they monitor. There's not a guarantee of that. The only way to guarantee someone won't die of breast cancer is if they never get it in the first place. I mean people shouldn't be told a double mastectomy is the only way to prevent that because that's a lie, too. But with women who have high penetrative cancer genes it is most assuredly the superior option over monitoring. Anyway I wish they would remind women of the beast breast cancer really is and do more studies trying to figure out what happened with those of us who got it. Sure some people have some genes for it but not most. There's some other reason for them and prevention is the only cure so let's definitively figure out how to prevent.
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Kay, I’ve been thinking about this a lot lately. Heard of yet another BC ‘survivor’ dx with Mets to bone and brain. My first thoughts were about how it could be me. (Or any of us, really) because this never does get “cured”. I’m angry and sad about BC all over again.
It’s been 2 years since my DX and I’m wondering when there will be a day goes by that I dont think of cancer.
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I have to rant, my mother is driving me crazy. I am her only child, she is constantly wanting me to sit with and hear all of her reasons she doesn't feel good. We have had a horrible summer, been to every doctor and emergency room multiple times just to get told she is ok. Her gastrointestinal doctor had a colonoscopy and endoscopic exam which did find an iratation in the bowels. Been on meds and constantly complaining for 2 months. I can't take anymore, if I need to go out for any reason it is hurry back ASAP, even though my husband and sons are with her.
She can not relax constantly pacing, I sure hope the stress doesn't cause my cancer to return. She 87, totally capable of walking, driving a little, showering, dressing she doesn't need that kind of help. She refuses to see her neighbors or others.
Over and over she says why can't I just die. She is on an antidepressant her GP knows what I am going through but no help. Social services basically handed me a print out from a web site. This can't continue. Refuses to watch TV, read or do anything. I feel like wants me to be miserable.
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meow13, I am so sorry your mother is making you crazy. It sounds like she may have a bit of mild cognitive impairment. Being stuck on her health constantly, and the pacing are signals to me. Only speaking from experience as both my mother and mother in-law had issues. My mother in-law suffered from delusions (she thought her husband was cheating anytime he left the house-he was on dialysis). Someone had to stay with her so she wouldn't go out after him. She did take the car once and got lost. Luckily she wasn't too far and a family friend called. We worked with her GP and also got her into a neurologist. She was on some heavy meds (Abilify-busprione-donepezil) and it helped but her kids did not like that she was a bit zonked out at times yet she would still respond to you when prompted. So I asked them, you want her delusional or calm and a bit sleepy? It was around this time that I was diagnosed. BC got me out of going there every night to medicate the poor woman. It was a horrible ordeal.
Anyway, you are a wonderful daughter for taking care of your mother and having her in your home. It is very hard to watch their behavior change and to accept and adapt to it. Deflection and distraction are skills I wish I never had to learn, but they work in certain situations. Would she like puzzles, or even a coloring book? Try to find an activity that will keep her more relaxed since she doesn't watch the TV. Trying to get a diagnosis takes months. I really feel for you and what you are going through. Hang in there and take care of yourself.
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Or if she enjoyed doing knittng or crochet or any needle point work anything to occupy her. Since I have a form of what is considered "early onset dementia" called primary progressive aphasia and it affects my speech I am also on a board (not as good as this though) of people who are either caregivers of people who have this or are searching for a diagnosis or people who have it. A lot have those behavior issues though on there I know. I can pass on information to you if you would like to send me a pm and you can check it out as a "guest" and decide if you want to join that one. You may find some people who have some good coping skills in there for you.
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kay - according to breatcancer.org ..."Nearly 30% of women diagnosed with early-stage breast cancer develop metastatic disease." I'd like to hear this spread around during Puketobber. No oncologist should ever use the term "cured" when speaking of breast cancer.
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meow13:
That sounds really stressful. It might be a long shot, but have they checked her thyroid? Thyroid issues can cause malaise, depression, gastrointestinal issues and anxiety.
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My MO did not use the term 'cured" at all for me as what "early stage and "nice cancer" as my BS called it so easier to treat with hormonal therapy. I still she her and get checked all the time including lab work by MO but now only have to go once a year now unless there is an issue and need her sooner since I am not on meds now. Any MO who says someone is "cured" is not speaking honestly to their patients and I would look for another doc.
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I find the topic of cure and bc to be both baffling and interesting. The odds favor the treated early stagers but no one is truly ever out of the woods. Heck, someone here on the stage IV forum said I was probably cured. I believe I have been very lucky but not cured.
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just saw a big PSA about about getting your mammogram every 2 years. Well, 18 months (covid delayed my annual) wasn't close enough to catch this de novo before it spread. While I'm thankful it was caught and I'm in treatment, it really does make stage 4 seem to be our fault.
None of the 84 known genetic markers, no family history, my job IS excersise, my dad keeps asking what I did wrong. Sigh.
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You cannot blame yourself at all. I was thin and exercised every day and we ate low fat, low carb low sodium already due to DH health issues he had. No family history of breast cancer (other kinds but not that one) so it was a bit shock. I was busy taking care of DH who was very ill and put off exams myself when I got sick one day with strep. When at the doc to get antibiotics he noticed I was due and needed one so scheduled it in that office (across the hall) on the way out of the building. Shocked to find cancer at that point and glad primary doc nagged me to get a mamo done. You work hard and do what what you should and still get it!!!
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Let’s put an end to self blame now! Let’s also educate those, even close family members, who attempt to blame us for our bc as well. My late mother was convinced that I was stage IV de novo because I waited 13 months between mammograms 🙄. We did not cause our bc, full stop!
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Brother. I was mad enough at my SIL who still refuses to get one because she is convinced "they hurt" or something. I told her NO cancer hurts! I was surprised though after people found out I had it how many I knew who were someone I knew came and told me they had been through it as well I had no idea they dealt with it at all because they kept it so private.
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People like to blame us because it makes them feel better about their own chances of getting cancer. I would like to say though that the 30% of early stage breast cancer relapse doesn't appear to have a modern source or even a good source for that statistic - "https://www.medscape.com/viewarticle/849644#vp_3". It's high but I don't know if it's that high. Another study I read said this, "Breast cancer recurrences represent a major source of cancer-related deaths. 21 On average, 8% to 10% of breast cancer cases present with locoregional recurrences after surgery, and approximately 11% to 30% of patients develop distant metastases."
Either way I definitely agree we need to stop saying "cure". Early breast cancer patients can relapse whether it's 11% or even as high as 30% for years and years after diagnosis.
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