STEAM ROOM FOR ANGER
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@LoverofJesus - I’m so sorry. You have every right to be angry and that’s the purpose of this forum. We are here for you. (((Hugs)))
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@Serenity - I might be a bit snowflakey and that’s OK. We can disagree.
I hate being told what to do, particularly by doctors. Following doctors orders resulted in a human error made during surgery many years ago. It nearly cost me my life. I appreciate much of what science has accomplished (it has kept my child alive for the past few years). But doctors and scientists are not perfect - they have failings just like everyone else. I tend to take a very cautious approach.
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LOJ,
Your frustration comes through loud and clear. It is very difficult when you plan for life to go a certain way and then it doesn't. I would say that all of us who have been dx'ed know the feeling. I know it may not seem like it now, but eventually you will regain some semblance of your usual life. You seem to be a religious person and although I am not familiar with your beliefs, you must realize that we are guaranteed nothing in life, even if we have made all the right choices and have lived exemplary lives.
As to your question on the COVID vaccine vs breast cancer drugs, you are making the assumption that there are equivalent circumstances but nothing could be further from the truth. A virus is a different animal than breast cancer. COVID 19 has been identified as a virus that causes a particular illness. The cause is clearly known. Sadly, researchers still have no real grasp on what causes bc so finding meds becomes very difficult. Additionally, bc is not one monolithic disease. There are many variables and permutations that live under the umbrella of bc. As for the Bayer drug, ErSO, it has not progressed beyond mouse cell trials. Although it shows promise in mouse trials, it is far, far too early to introduce it to humans even on a fast track basis. We can still hope, of course, but the reality is that the majority of drugs that are trialed on mouse cells never make it to approved drug status. If this was not the drug you were referring to, can you tell us the name of the one you meant
Again, I am so sorry you find yourself in this situation. Take care
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Harley - I'm glad you survived a medical mistake. I was raised by a doctor, so I really dislike being told what to do. And I'm cautious as well. I did not blindly jump into any of my medical treatments. My husband and I separately read about my options and then discuss them. But I didn't earn an MD with my hours of web browsing.
In an earlier post I placed a link to an article about a young man who wanted to wait a few years to get vaccinated. The virus didn't care, and now the young man has 2 new lungs due to COVID.
Not getting vaccinated is not without risk. The new variants are more infectious, and the side effects of the disease are worse than the side effects of the vaccine. Cases are on the rise again mainly in areas with low vaccination rates. Hospitalizations are mostly not fully vaccinated. Not getting vaccinated is throwing caution into the wind with an airborne virus.
LOJ - We understand your frustration. I get rashes, too. If OTC ointments don't work, please let your medical team know.
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LOJ, I bet you do know that nothing in life is guaranteed. And I say that even knowing this, it is understandable that you are sad and angry that cancer/cancer treatment is stealing from you the ability to be with your family enjoying summer activities, and going on the vacation you had planned. This is a good thread for saying so.
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Because COVID affects everyone and cancer does not it became a priority for funding. There are so many kinds of cancer and people are dying every day from cancers. I know there are people doing research somewhere but not enough. So sad when hear of another person gone from this even though they tried to fight it.
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cancer isn't one disease. Even breast cancer isn't one disease. Even triple negative breast cancer isn't one disease. We keep parsing them donw further and further & sometimes come up with solutions for one very specific sub - sub - sub type. It's nothing like developing a vaccine for a single stranded RNA virus.
My anger these last few days has been at people in the so called 'thriver' community = long term survivors of metastatic breast cancer .... *not here on this forum, in other social media/websites/public life, not here!*... who are cagey about their diagnosis and treatments. There is a reality tv star claiming to be a survivor of stage 4 cancer. That's just not... nope, nope. I hate the misinformation. I hate that some people are scamming. & she's not the only one. I've been going hmmmm about several other people & I hate that we get suspicious but....some people lie. Ugh.
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moth, I hear you!!!
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moth, I think that most people who have had little experience with cancer/bc think it is one homogeneous disease. My father used to send me articles about all types of cancer and promising treatments. When I tried to explain that I didn’t have lung, bone, prostate cancer, etc., he would just throw up his hands and say , “ But it’s all cancer!”
I had no idea a “thriver” community even existed. Are you saying that members of this group and in particular the reality star are pretending to have stage IV bc? That’s bizarre.
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exbmxgrl, I suspect some are stretching the truth. the reality star - she claims to have survived stage 4 breast ca. I think we'd have heard of her & her name is not Perkins or Bigelow so hmmmmmm? On twitter some people reported reaching out to her and asking about it as fellow stage 4s and getting a vague 'keep fighting' msg back. I don't watch the show but saw the author profile...her claims are very public & no journo is questioning them which is annoying. I don't want lawsuits but if you're curious I can pm you the info.
some other people on SM had mets to lymph nodes and were stage 2 or 3 but along the way it's morphed into "I had metastatic disease" (which is sort of technically true & how it would be described in a path report becausethe words lymph node metastases would be listed) & then suddenly they're talking like they're in the metastatic cancer community as if they're stage 4.
A group that was active on FB had a total faker exposed a few months ago. Was just making it all up. I missed it all because I'm not using FB cancer groups but heard the fallout later.
Sometimes there's gofundmes attached. Sometimes it's just people wanting sympathy or spinning their diagnosis into some sort of cancer influencer career. I feel like here we build a community & it would have to be a super long con - not saying it's not possible - but unlikely. But other SM is kind of sketchy.
Flipside is also happening - someone who I'm sure is sick (well as sure as I can be, having never met her in person) is being relentlessly harassed on her social media accounts by a couple people who think she's faking.
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Moth - I'm pretty sure I know which reality star you're referring to because I saw the show and immediately thought she was not being 100%. I did some digging, and found an article survivornet.com did on her. It says she got her MBC diagnosis in 2009, and had some pretty detailed info on her treatment. Not sure if they're the kind of organization she could get away with fooling like that.
I know she's not a very good spokes person for MBC, but I'm conflicted about whether she's telling untruths.
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aho mommamonaster, I hadn't read those details. That changes things I think.
I TAKE IT BACK about her!
she also says she chooses to use the word cancer free herself. Because 'she's risen above cancer'. I mean - my eyes rolled pretty hard here.
Being stable bone mets only since 2009 is an awfully good run. I hope she continues to do well. (I do not like all the stuff about being positive and whatever else she claims worked for her. LUCK, lady, it's sheer LUCK.)
no take backsies about some other social media peeps lol.
& I'm cranky cause I just heard a triple neg died less than 2 yrs after dx. I mean, I feel like that real reality is lost. She's not on a tv show. Nobody knows about her. Are people going to think that MBC is curable and you just have to be positive and journal and change your diet and take control and just decide that cancer isn't going to beat me? I mean... argh. I'm so conflicted.
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My cohort - the one I had to leave in Feb 2020 - graduates in August. Some are already done because the last semester is a full time clinical preceptorship and depending on scheduling, some people are already done.
It is like a knife to the heart. I still have my schoolbooks piled by me. I really need to let this go and just CANNOT.
Sometimes the rage at this is just so strong.
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Rage away, moth. You have every right to be angry. It isn't fair. Cancer fucking blows.
Trish
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small towns are great. Until they’re not. Called to schedule PT appointment. Receptionist mentions she had same surgeon. Then goes out of her way way to tell me her last name - we used to work together over a decade ago. We talked for a few minutes (we’ll, mostly she talked)
I tell very few people IRL about my dx but it’s getting harder and harder to keep quiet.I’m hoping she can keep this to herself.
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This is a mini-steam and kind of just a mini-rant on how this whole "experience" impacts me and i'm sure others in the weirdest ways. Incoming grossness too, lol.
I am in the process of moving (yay!) and so, packing up several years of a house. Same house I've been through all this in. I just found a bottle of mouth rinse in the back of a cupboard that I know I have cleared out a few times and I know it is because I could not bring myself to throw it away.
It is over ten years old....
I also found some of my old sleep caps and the knit hats I wore that winter, and felt a familiar nausea, but donated them.
I keep finding stuff, some of which I keep keeping.
Frustrating and sad !
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Notascalm yed small towns are nice but where my daughter lives so small there is no Wal-Mart even. Since she is a teacher and he is a pastor they know everyone anywhere they go. You cannot just roll out looking icky how you often feel sometimes since you will run into someone you know. They order from Amazon and have stuff delivered a lot and stay home. They often have to drive many hours for major medical care too. In bad weather it ia challenge too.
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You have every right to be sad and mad. It seems all I do is go to appointments all summer long. I work in the school system so I try and do most appointments in the summer. I'm seven years out from initial diagnosis but I still go in every six months for zometa infusions to attempt to stave off osteoporosis. I am going in on Thursday for an ultrasound on one of my implants as I had a really bad fall about a month ago trying to avoid getting hit by a truck who was pulling a trailer and I fell extremely hard with my arm under my check. (I was out for a run). I thought I probably just fractured or bruised ribs but now I am having some weird swelling and some misshape to breast implant. To add insult to injury the stupid implants which have been super uncomfortable from day one are the type that are recalled. I also am BRACA 2 positive so I am also at risk for melenoma and also pancreatic ca. So I go in yearly pancreatic ca screenings. One year an MRI with contrast followed by a Ultrasonic endosocopy the following year, If my implant tore and I need surgery in the near future I think it is going to put me over the edge.
I have seven more years until I can retire but I honestly don't know if I can last that long. Unfortunately paying for insurance is to expensive so I guess I will keep on working. And the constant medical bills... I have lymph edema as well and the custom compression garmets are so expensive. I think I paid over $1000 out of pocket after insurance.
I'm so sorry that you are not able to enjoy your vacation. I don't think most people who haven't gone through treatment have any idea how hard it actually is.
If it cools down in the evenings try and at least get out a bit if you are able.
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runnergirl understand about costs of insurance too and working. Husband disabled and I was main income here for many years. Had to stop working and went on our State exchange and got a good plan there and a reasonable cost. Fortunately we do not spend a lot of money anyway so cutting back some was easy for us to do. It was a better medical plan than my employer even offered with a lower deductible. Might be worth checking out if you are considering leaving work what is available where you live and the costs. I know every State has their own plans. I went off it and am Medicare now since on SSDI now due to other health issues not cancer related. I would have kept the one I had though if I could since it was so good and covered all me PET scans and everything. I had a $700 a year deductible to meet and then everything including my medicine was covered with mine. I hit mine early in the year.
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It's just a tree.
Just a tree.
A little twig in a bundle that was sent to me by my friend, my e.friend, who had pancreatic cancer. We wrote every day for two years. She needed someone to talk to as she died. Someone she could say anything to without fear that she would be judged or condemned or corrected. She needed an ear but not a face. I was that ear.She sent me a bundle of willow shoots. Tender babies, root them in water, she said, they will send out roots, and they did. One will grow black pussywillows. One will grow pink pussywillows. One will have beautiful, unique variegated leaves. I rooted them. I planted them. I tended them. Slowly they died. Every dead willow was a stab in my heart. I willed them to live because they were sent with love. All the will in the world could not keep those willows alive.
E.friend died and I had only one frail willow with a little plaque with her name written on it. And then this horrible, unrelenting heatwave came. That wetland willow that was barely clinging to life in my rocky, dry piece of ground finally gave up the ghost. I watered it. I mulched it. I spoke to it. I spoke to friend. I invoked her name. I told her I had not forgotten about her. That I tend this little tender tree and think of her and the life she had and the things she loved and this little twig keeps her real to me and it shows that I have not forgotten. Despite everything that tree died. It just bloody dried up and died. I could not keep it alive. It didn't matter what I did. It survived 2 winters, but not this damn, dirty summer. And I am both sick and so effing furious I could spit. I know it's just a tree. But it feels like a failure and like I let her down. The smoke is chokingly thick, the sky is the same from morning til night because the smoke blocks the changing hours. Ash covers everything, feels gritty in my eyes and on my skin. It's just a little thing, this tree. But it mattered a lot and like so many things, despite my efforts, it went wrong anyway. I feel defeated. There are no tears and no rain. It is to dry everywhere.
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runor, I'm so sorry about your friend and I'm sorry about your trees. I get it! You do everything in your power to keep something alive and it dies anyway. I wish I could help...
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runor, I'm sorry. Maybe your friend is telling you that it's okay to move on; she is fine and she doesn't need you tending the little tree anymore.
My friend with lung cancer died yesterday. Today Amazon delivered his small soft-cover book of short stories that a friend of his got published. My first thought on seeing the book is that it looks so pretty and fun and I don't want to make it dirty or get cracks in the spine of the book. Then I realized that what would make him happiest is if the book becomes well worn and tattered from having been held and read so often. Can't wait to read it!
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Runor and Beesie, I'm so sorry for both your losses.
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Cancer still killing many. I too am sorry. I just came from the cancer doc and asked when can I stop coming here? He said after I’m done the hormone therapy then once a year. Since I just had an mri no exam so we just chatted and ordered dexa and lung scan. He did ask how the bay cottage was coming so he gets an A for social graces. The girls there are also so nice asking how I’m doing. One of them just lost her son to ALS. She lost her husband 3 years ago. Anyway now I’m sitting at the bar for a minute having a water and a wine then picking up dinner next door and meeting my great nephew Ben in person for the 1st time at their house.
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Runor and Beesie I am very sorry for your losses. Lots of internet hugs for both of you.
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Beesie, I am so sorry. Hold the book. Press it between your palms. Breathe it in with your eyes closed. Then open it with reverence and read the words your friend created. Touch it often and savour it. That is how we remember.
Thank you all.
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moth: the "New Normal got replaced with "Living In The Moment" -- but those ads are also guilty of using "thrivers"...and "MBC is relentless but I am relentless" ---- what is that supposed to mean? I relentlessly go to scans, to infusions, relentlessly try not to be afraid, relentlessly try to sleep, relentlessly tell people my treatment will end when I am dead or a miracle happens.
ctmbsikia: I am sorry about the loss of your friend. ALS is a terrible disease. It is so cruel in taking everything away except your awareness.
runor: you tried so hard. I understand your grief for "just a tree". It wasn't just a tree. If there is such a thing about spirit - then your friend knows how much love you poured into the tree in memory of her. I am so sorry.
Beesie: read the Hell out of that book. Dog ear it. Crack the spine. The book is your touch stone.
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runor and bessie I am sorry for your losses.
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Just gotta keep going. Hope you don’t mind me sharing but here he is. I had a moment of joy after an mo appt. I should do this more often. Every 6 months. Spits. Lol.
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