STEAM ROOM FOR ANGER
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👍🏾so true!
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Feel like the stress and anxiety of cancer and treatments just flows to all aspects of life sometimes no matter how hard you try. Makes you mad at cancer, mad at everyone even if not their fault. Felt like I should be turning green and wearing my pointy witches hat. Everyone else thought it was funny since I don't "lose it" at work but sure didn't feel that way to me. Stress stinks and cancer stinks. Hate this and meds that cause anxiety and worry and stress and make me cry at the drop of a hat.
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yes yes it does. As I sit here with tears running down my face yet again. Everyday really. I don't even want to wake up anymore. If I am honest with myself. Truly honest. I am tired. And I am getting weak. They don't call this a battle for nothing. I am starting to think that word doesn't even fit. It's more like a death hunger games. You don't know what will happen once you're in that arena. The cancer arena. Hugs to anyone's that needs one. ~M~
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Ah, Micmel. I hear you. I'm 7 1/2 years from the BMX - so a 7 1/2 years "survivor" right? The life-time side effects of the treatment are just getting worse. The osteoarthritis from aromatase inhibitors is getting worse. Now I have bouts of fatigue that make me have half a life. I practically narcolepsy left and right. I wake up in the morning in such a pain and it takes sometimes a full hour for the pain killers to fully take effect - if I don't wake up during the night due to pain. And what am I looking forward to? Other people at 56 are fully active and have a full life. Me? The days I am able to vacuum my living room without collapsing are a miracle.
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Micmel, from your signature line you have bone mets. If it is physical pain that is causing you so much anguish, there is a lot you can do. I tried Fentanyl patches, but nausea was a big side effect for me. Rads made all the difference. I had some treatment for 5 days and some for 10. Within a few days each time I was off my walking stick and pain free. Another option is Oxycontin (slow release) and oxycodone for break through pain.
You do not have to suffer. If your GP is not helpful contact palliative care, they are great with sorting out pain relief.
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Sea~god bless you darling. God bless us all. We all need something better out of this. All of us. Hugs bc sisters hugs!
Freya~ my pain comes and goes. Its more of being run over by the fatigue and zombie truck daily. I manage the pain as best as possible, but... Hit the proverbial wall every single day a few hours after I've woken up. I also think for me it's knowing what kind of future I have. Knowing what I won't be able to do, traveling. Emotional ruin. Etc.... I think everyone knows what I mean. Thank you for being an ear or eye actually to read my woes. ~M~
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Medical cannabis for pain, if you live in a green state, ladies. Oxy and other opioids often don't work for people with deep bone and nerve pain. They certainly didn't work for me.
Another crappy thing was even tho I was only on them (when 1st dx'd St 4 de novo) for about 6 weeks, only taking 2 or 3 pills max a day, I STILL had mild withdrawal when my MO made me get off them because they were jacking with my liver enzymes. Some opioids are very hard on the liver. Many opioids are cut with other analgesics. Tylenol/acetaminophen messes with the liver and Advil/ibuprofen can be hard on the kidneys.
Also, talk to palliative people about fatigue, too. Lots of women still have to work while on chemo, and battling St 4 daily. They can help with that. No, it won't be like it was when you were 35, but it will be better than doing nothing.
Hugs, everyone, L
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The withdrawal is a concern I agree. Lita I also agree about the medical Cannabis, it helps with Nausea and eating as well. I wouldn't make it without it. The oil helps me too. Sometimes people bring me edibles. They don't tend to work for me as well as the vaping and the medical marjijuana, it also calms my nerves. When I'm not losing my mind. Good advice !! ~M~
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With edibles, it usually takes 2 hrs for them to kick in, but when they do, I can sleep thru the night. I make my own, as some of you know, and I backtime them. If I want to go to sleep at midnight, I have a small cookie or half a brownie at about 9:30 or 10.
If you're on pill-form chemo, take MMJ at least 2 hrs AFTER your chemo dose so it doesn't compete with the liver pathways the chemo uses. Tincture under the tongue works much faster. I alternate between edibles and tincture. The tincture I use has more CBDs than THC, but it still helps me sleep and dulls some of the pain.
Prayinf for spontaneous remission for all of us!
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Maybe u ladies can help me out. I've been Stage 4 for 31/2. Pretty much just moved around. Breast, liver, chest wall, vertebrae. Chemo, radiation, surgery, biopsies. At the moment I am NEED. Can't wrap my mind around it but so thankful.....
Now, I've been on oxy pretty much the entire time.....ready to come off, wean down....something.
How, how do I let go??? I still have pains, aches....like so many have said....Body is NEVER the same.
Anybody done this? Said enough? Or just stayed the course.....knowing shoe could drop at any scan.
Just wanted to get your thoughts.
Onc really don't care. Just thoughts in my mind!
Much love to all of u. I know what it's like!
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Babyduck, I go each month without pain pills for anywhere from 3 to 5 days. It is very hard to do so, I have withdrawals and the pain comes back with a vengeance, but so far, with this small "detox" monthly, I managed to stay on the same dose, didn't need increases at all. Recently (about 5 or 6 months ago) a friend told me about Kratom and gave me a few pills to try during my "detox" time. They work. Dont' get me wrong, it doesn't control the pain like the opiates do, the pain is still there but at a pretty much bearable level. And it helps with the withdrawal. No withdrawal symptoms whatsoever. If you want more info, PM me.
I live in Oklahoma. I very much doubt we'll EVER get legalized medical marijuana. I'd rather use that than opiates a hundred times over.
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Babyduck, you can wean down. Ask your doctors to help you! There are protocols for this.
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This site and its users can bring a wealth of information but I so frequently have to bite my tongue when pregnancy after cancer is discussed. Not always, but when a young person has a family history and/or reasonable chance for recurrence, why would you even consider more children?
It would be considered very rude of me to ask why they would want to pass on flawed genes or how they think their possible premature death would affect a small child or those responsible for raising them. I just don't get it and don't want to start fights with people dealing with truelyterrible stuff but if you wouldn't wish cancer on your worst enemy, why would pass along the risk intensionally?
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I am not sure anyone can answer that one Mae darling! I know I am just thankful my kids are 21 20 and 16. I would be heartbroken if they had chubby fists and were in high chairs. That wouldn't be fair to them. I wouldn't be able to take careful of them. It would be too hard. I am in awe of some people who still work while battling cancer, and have young children. God bless you. I guess it depends on your life situation and or close family. I myself wouldn't leave a Gerbil To my family. I just pray that for those people who chose that,That it all goes the way they had hoped. Have a great weekend everyone ! ~M~
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Illimae...WORD! PREACH IT!
I told my dh that if we didn’t get PG by my age (back then) 32 -35, then no way would we have kids.
My mom died from soft tissue sarcoma when I was a young teen, NO FAIR to the kids when u die young.
No history of bc in my fam, so dont know what 2 tell my dd now. Maybe not a good idea to have kids given her maternal g'ma history of sarcoma cancer and now my de novo history of St 4 bc?
This is the shits for sure...
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illimae,
I have never posted on this thread before (Anger is not my thing. Normal for most but I have never been called typical). However, if one should have children after a bc diagnosis is a highly personal decision, and one likely made after careful consideration, and one that I would never second guess. My dd's are grown and my genetic testing was negative, but if I had tested positive, they would have been tested. If they had tested positive, they fully intended to have children and then pbmx.
The urge to become a mother is very, very strong for many women (perpetuation of the species) and it is a decision I would never second guess or question. What I would or wouldn't do in someone else's shoes , is immaterial.
Mcmel,
I have been fortunate in that my stage IV dx changed things in my life, but not in a major way. I have continued to work at a job I adore and every new school year, I get 20 some odd "new" children. I think it's just the luck of the draw.
Take care all.
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Everyone plays up how deadly cancer is in order to drum up awareness and funding. But if you're one of those people who actually have a terminal diagnosis, nobody wants to hear from you because it's too damned depressing (for them).
It's to the point where members of the metastatic club can feel like personas non grata in what is supposed to be a big fluffy pink tent. In all-stages breast cancer support groups, many people with Stage IV are told that they shouldn't talk about metastatic disease or share their story, because it's 'scary' to early-stagers who want to think they 'beat' cancer," We're dying and being told to be quiet about it because it doesn't fit in with the propaganda.
In other words, "Could you please stop dying so loudly? It's rude."
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Thanks BB.
Wrenn, I have never actually been told that, but it is how you are made to feel. Every organisation that is trying to raise money wants people to be scared of cancer, but to believe that if they give money no one will die anymore. So basically you are the monster under the bed, dragged out when needed to scare money out of people, but hidden away again when they put on the fluffy pink show.
(It is 2.30am, I have a fever and pain, so my posts may be more cynical than usual, or not LOL)
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Wrenn, that must have been devastating for you. I am so sorry you had to go through that, and then deal with peoples stupidity as well.
I understand the death of a child and not being allowed to talk about it. My stepson died of a brain tumour when he was a young teen, he was dxd at 9, No one would let my husband talk about him, not even his family. It was horrible. He needed to talk about him, not just his illness and death, but his life and good memories. He wanted to keep his memory alive, it seemed everyone else wanted to forget he ever existed.
I will never understand people.
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Just lost my friend Joan to de novo St 4 lung cancer. How do you "blame the victim" when she never smoked or worked in an asbestos filled environment?
She went into hospice on the 22nd and passed on the 29th after her liver shut down. She was an inspiration, surviving 45 months when most people with St 4 lung C only last about a year.
Nobody wants to hear about any of that either. She died too loudly.
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Lita~ I am sorry for your loss. May god keep her happy and take in another beautiful angel. In my case I could be blamed as well. The lump was there. But they said it was a cyst. Two different doctors even. I wasn't ignoring it. It just happens without any symptoms sometimes. The day I was diagnosed I ran six miles in an hour. It just hits you and dismantles your life! Hugs to anyone that may need one today. ~M~
btw. I intend to die quite loudly every second I'm
Alive. .... ~M~
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Just out of radiation and feeling black, black black. Also a little black, as in crispy fried boob. But yesterday it hit me HARD and I struggled with the fact, FACT that I am going to die of this dirty disease. Oh no, it hasn't spread. Yet. I just have to take that miserable shit tamoxifen for 5 years. FIVE YEARS! Who the hell got to decide that 5 years was the magic number. Is that how long a cancer cell must be deprived of its food supply to die? 5 years?
People tell me that something else could kill me first. I don't even know how to react to that. Yes. Sure. It's true. Something else could kill me. It could kill you too. BUt do you wander around THINKING about it, KNOWING it? Do you get up every day and wonder, hmm, what's going to kill me today? No! But once you've had a cancer diagnosis, this thought is on you day and night. At least it is for me. Because I do not believe that breast cancer is curable and while some may call a postponement a cure, I do not. Nor do I call a sow's ear a silk purse.
At the cancer lodge I was sharing my bleak thoughts and said that if I get another diagnosis I am going to phone a hit man (Italian, dad was a mobster, I have many on speed dial) and I'm going to pay him in advance to put a hit out on myself. I will say, sometime in the next 2 years, shoot me. Make it a kill shot. Clean. No struggling. Do it when I'm happy and in the middle of something that brings me peace and joy. If you see me begin to suffer, don't leave it too long. Make sure no one I love is around to be traumatized by it. Just make sure you do it before life has become an agonizing drudgery.
People were horrified at this thought. How could anyone walk around with a target on their back knowing at any moment they could be shot? WHAT DO YOU THINK BREAST CANCER IS IF NOT A HIRED GUN WITH A BULLET IN THE CHAMBER AND YOU WITH A BIG, RED TARGET ON YOUR BACK? Let's be real, people. At least a hired gun is an expert kill and paid to be quick and merciful. Cancer? She's one ugly bitch.
Later that night someone was sneaking around the parking lot of the lodge and I watched as he ducked into some bushes. I went to alert the on duty lodge person that maybe that car burglar was back. She looked at me with a wicked smile and said, "Or maybe it's that hired gun you've been expecting?" Ha ha, what a shit! But really. I think it's a brilliant idea, considering the alternative. I am pissed that it feels like it has come to this. I am pissed that I have 70 year olds telling me to be positive when I highly doubt I will make it to 70 myself.
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You're not alone on your thoughts my darling. Mine has spread. Yes it has. Not a lot but it's there. I don't like anyone to tell me anything about age and growing old. I want to kick them. I can relate to your fears. I do not for one second believe that cancer is cured either. It lays there dormant waiting for yet another perfect storm to unleash it's hell on you. Don't stop taking that pill after five years, would Be my thought. I don't think they know a damn thing. Someone's sitting in a room making decisions about treatments and medicines. Most likely,that has never had breast cancer. It's all a shit stew and I am sorry you're going through this and I'm sorry about your radiation pain and I am just sorry we all have this beast to deal with. ~M~
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Runor...why didn't I think of that? A hit man, perfect!
Out here in CA, we have to pay 5,000 for the "end of life options" meds, but you have to jump thru SO MANY hoops to get the stuff, and it could take up to a month to get it.
What if you don't have that much time or you simply don't want to wait that long?
I wonder how much it would cost to have someone heave me off a cliff at Big Sur? I kid with my husband all the time, saying, "Oh dear, I just let go of her wheelchair for a second...I don't know what happened. I think she just leaned forward..." That's all you have to tell the cops, honey.
No, it's not just having a bullseye on your back - I have one on my liver, my pancreas, my abdomen, my pelvis, my hip, my rib cage, my thoracic spine, etc. At any time, one of these active areas could seriously mutate and go ape-shit, taking me out in a matter of weeks. (THIS just happened to my friend J. She was okay in June, and now she's gone...went into hospice on the 22nd of July, died on the 29th.)
My Italian grandparents immigrated to the wine country. Not too many reliable OG Italian hit men out here that I know of.
But I could do some research...it's worth a shot - no pun intended.
When all else fails, I could go out like Amy Weinhouse....a big bottle of vodka and some opioids, I still have plenty that I haven't used. But I don’t want my family to find me like that. Big Sur is sounding more like a plan, even if I have to roll myself over the edge.
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I sit here in Ohio, the planner that I am, conservative but ready to cross the line (horror of horrors to my husband) to get Death with Dignity approved here in Ohio. Amy Winehouse way sounds like it for me.
I have an 8 yr old kid and I'm just trying to stay alive and able to drive him to sports and activities until he's 16. I'm so upset - he had his WORST practice/tryout ever last night. I mean BAD. He's done so well with baseball (and basketball). I'm trying to get him on some travel teams where he can really bond with some other kids and get in with a group that he can be a part of for years (he's an only child and with costs of living, my life insurance will help my husband pay off the mortgage, hire out the laundry and the lawn mowing, but won't let him quit his 50 hr a week + job). The grand parents are still around and driving so they could ferry him around as needed. It's such Bullshit the things we have to worry about.
I agree with the person above, when people say, we are all going to die, you could die of something else...blah blah blah...I want to punch them. I've never hit anyone other than a horsefly off my horse's arse either!
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You could die of anything at any time.
We're all going to die.
You have to think positive. Your attitude will cure you or make you sick.
PISS OFF!
I know that these things are said most often from a place of wanting us to feel better, but boy do they miss the mark! My attitude is going to save me? If so, we'd all be hopped up on antidepressants and pot, eating bag after bag of popcorn and peanuts, happy as hell and CURED. Only that's not the case. It would seem that even those with stellar attitudes get cancer and then get it again later on. So ... shut the flock up with that attitude shit.
I see it like this. One day you stub your toe. Stub it bad. The nail is split open down to the cuticle and sticks up jaggedly. The end of your toe is pulpy flesh, you probably need stitches. It hurts like a sonofabitch. Every step you take it throbs like hell. You're looking at this busted up toe, wondering how you're going to get it in your shoe let alone carry on with your day when along comes Miss Betty Positive.
"Put your shoe on and let's get on with things," she smiles at you stupidly. You look at your toe, she looks at your toe, but it does not seem to register with her that you have a massive injury that makes even getting your shoe on some sort of impossible task.
"Betty, my toe is all busted up. I don't think I can move along like I used to. I'm having a technical difficulty here. And perhaps gangrene."
Betty smiles again and says, "You just need a positive attitude. Now get that shoe on your foot and lace that puppy up. It's a lovely morning. We need to run a few laps. Frankly, you're looking a bit thick around the middle."
"Betty!" you say, " I have a destroyed toe. I cannot get my shoe on and I sure as hell cannot go run laps. My toe is ruined! I am in pain!"
Betty says, "Look, Cancer Carol, we all have toes. We all lace them into our shoes and get on with life. Your toe is no different. We are all in the same boat. See? I have 10 toes also and do you see me sitting on the sidelines? No. Here I am. Facing life, ready for a jog. There is nothing special about your foot that makes you any different than the rest of us."
At this point you realize you have met potato chips with higher IQs that Betty Positive. You consider slugging her. You remember when you also used to put your toes in a shoe and walked through life without giving your toes a second thought and you know with that toenail sticking up, ripped and the flesh battered, you will NEVER walk again, unaware of your toes. Ever. And that is the difference between you and Betty Positive. Every step you take for the rest of your life you will feel it. Know it. Your attention will be drawn to it. Unlike Betty who walks along without a thought. She has the gift of not thinking about her toes. You have the burden of always thinking about it. And that is the difference.
While you are jogging, painfully, gritting your teeth, push Betty into oncoming traffic as soon as you can, the stunned bitch.
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I can't stand hearing the stay positive stuff. It's true, it's view as being weak rather than acknoweledging our true fears and feelings. Kind of like a slap.
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It's like Stockholm Syndrome
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Runor, Betty should have known she could get hit by a bus at any time.
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Betty was secretly expecting it
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