STEAM ROOM FOR ANGER
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Sportymom I am so sorry you have to be in this situation. Its not your fault and don't feel too bad for your Doc - be happy instead that you have one that cares so much. I am just in the middle of rads and I remember how scary it was to be diagnosed (my was not caught as early as one would hope). I remember feeling awful about having to tell my kids. But you will be okay and very surprised at how well you will manage to still have a life be a wife and a mother and a person. Cry when you need to research talk to the girls on here. Lean on your hubby. Take care and be kind to yourself, no judgements. Cancer is a big f****ing bitch so remember its all her fault not yours. HUGS
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Sportymom - you are not letting anyone down! Cancer is a cruel and heartless bitch that doesn't care whose lives it screws around with. I'm glad you have the support of family and friends around you. I know how easy it is to let the thoughts take over and to go down some pretty wretched and dark rabbit holes. I was referred to psychosocial oncology through the hospital, you may find that helpful. They have social workers, psychologist, psychiatrist, etc.
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Fairydragonfly, there are no adequate words to describe your life since 2018. I believe the numbness is a way for your body to protect you. After six years of caregiving for my Mom & Dad, they passed away within 72 days of each other. I completely get the numbness that you are feeling. It took 9-12 months for me to begin the grieving process. I believe I was so physically and emotionally exhausted that the numbness protected me from the onslaught of grief until I was prepared to really process the loss of my folks. Fortunately the grieving process came gently and slowly.
Five years after their passing I got the shock of my life with BC diagnosis. I had a lumpectomy and then BMX with DIEP Flap Reconstruction. That was a huge surgery and recovery. Like you, I felt numb. I did not have the emotional meltdown until my one year anniversary of losing my breasts. It completely blind sighted me. I would describe that year as having PTSD. PTSD can block emotional feelings. It can give us a false sense of being strong when in fact we are fragile.
I am sorry you are having to travel through this incredibly difficult time. But it’s your turn now. It’s your turn to focus on you and only you. You should not have to be a caregiver for anyone. You need others to care for you. You actually are in the early stages of dealing with your cancer. It’s good that you have therapists, counselors and a support group. It takes awhile to get over this cancer thing. The cancer thing that feels like a dark cloud hanging over us. That feeling of waiting for the other shoe to drop. That feeling will lessen with time.
I hope you continue to stay in touch with us here at BCO.org. You will find support here that you can not find anywhere else.
Sending you (((hugs))). Lifting you in thought and prayer.
Bella2013
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Sportymom, this is all so new and shocking. You are doing fine.
I would like to offer a “radical" idea: You do not have to “fight" and you do not have to “be positive". Let go of the pressure and criticism.
While sometimes the idea of fighting has resonated with me, more often it has felt better to see myself as enduring what I must in order to be here with my family. (Thus the tough little pony in the snow that you see in my avatar.) I don't want to always be feeling like I am in a battle. That's too stressful.
The idea that a negative attitude will harm you and a positive one will make you well is a popular one, but a harmful one in my opinion. It induces unnecessary stress and guilt. The biology of the cancer and our response to treatment do not depend on our mental gymnastics. Cultivating gratitude and mindfulness help with our quality of life and perhaps our physical health as well, but pressuring ourselves to follow some accepted positive cancer patient script does not. Can a person mind-over-matter her way out of having OCD? No. Same for cancer. I believe that being REAL is healthier than forcing oneself to appear positive.
When cancer shows its ugly face at our door, there is a time of grieving our old life, of grieving the loss of what we expected. I promise you, you can get through this time and once again find joy. A good therapist who understands cancer or at least chronic health issues can be really helpful.
Admitting that you do not have total control is actually pretty healthy, too, in my opinion. It saves psychic energy. I mean, until I could do that, emotionally it was like I was kicking and kicking a solid brick wall. The wall did not budge, but I got pretty tired and frustrated, and my foot hurt.
Allow yourself these appropriate emotions. Take it one day or one hour at a time. Be gentle with yourself. Do little things that keep you in the moment where there is a break from the worry (pet the cat, smell the flowers, have some tea). And tell yourself, “I am ok right now."
Accept offers of help with meals, transporting kids, etc. Allow people to help you and your family. It is a gift to them.
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ShetlandPony, what wise words. And I love what you wrote about your avatar: the tough little pony in the snow. My hat is off to you.
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Sportymom, the posts above are rock solid good advice and hard won wisdom. There is not much I can add. But I do second Shetland's view that a battle might be the wrong analogy. I view it more like a journey. Of course, where you are right now gaining a perspective is almost impossible. You are in the thick of the tornado and everything is whirling around you and yes, you are a numb, weepig, non-functioning mess. Been there, done that. I quit functioning in every way until one day I looked at my unshaven legs and realized I was the missing link, who knew that I could get that hairy just moping around the house in a housecoat and a slack expression on my face. And you will, with shaky hands, pick up the razor and tame those unruly armpits or legs and in that one moment you will see that ONE SMALL FORWARD STEP at a time, is how you will get through.
It will not be fun. It will not be easy. You will be scared. You will get hurt. You are in for some serious bullshit. But you will just keep putting one foot in front of the other and deal with things as they arrive. You will focus on the long game. What do you have to do to get through THIS thing, that is right here, right now? Do that. Worry about the rest when the rest shows up. Your job is to be Serena Williams with a big ass tennis racket and as those balls come flying at you, hit them, hit them, hit them. Not a battle. It's dogged endurance. And women excel and exceed at that. That's why we're the tough ones.
I am sorry that you find yourself here and we all understand the shocking devastation to life this diagnosis brings. Expect that how you're feeling is right on track and perfectly normal. This is a rough and rugged journey. Make sure your hiking boots are in good order, that you have a sturdy walking stick, yes you are going to fall down and bang yourself and get scratched by brambles along the path - but you will not stop. You will just keep walking. The only way through is through. Hugs to you.
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Great posts, Shetland and runor. I would substitute "persist" for "endure" in Shetland's and "persistence" for "endurance" in runor's. Also, nice sports analogy, runor, with Serena Williams. I'm might go for Lance Armstrong so you could cheat.
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Bella2013 - PTSD sounds about right. I am active on other threads (like the July chemo one), I just wanted/needed to rant last night and didn't want to keep building on that 'oh pity me' thing. I appreciate that everyone has their own struggles. I was just in a pretty low place last night. The kind of night I would have called my mom.
Shetland pony and runor - I do agree with your take. We should be able to own our feelings. We don't have to put on a brave face and spew false positivity. It's okay to be vulnerable and get angry or frustrated. I try to say 'journey' as opposed to 'fight' and I like the idea of persistence.
Jayce49 - I'm with you on the Lance Armstrong view. 😜
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I don't use "journey" or "fight" or any active word. "Endurance," maybe, if I have to throw a word at it. Or "slog." I had it relatively easy as far as breast cancer goes, but I, too, lost my mother last year before my diagnoses, I had to have all my upper teeth pulled and get a denture, and just as I was adapting to that, breast cancer. Then kidney cancer and a nephrectomy, and an aortic aneurysm found at the same time as the kidney cancer. Quantity over quality? Last year is kind of a blur at times, and that might be a good thing. But as my freak of a sister said, "At least you don't have to deal with lawyers." 🙄 I've never reacted very emotionally to any of it yet, except for crying the night Mom died, which Freak Sister let me know by TEXT. So I don't know if my lack of emotion about everything else was a coping mechanism or if I was just too cumulatively tired to give a shit after awhile.
Fairydragonfly, my condolences and a hug. And a shared bottle of your favorite beverage.
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I like journey because I won't know if it came back until I'm dead. Fight... doesn't sound right. Makes it sound like you can control and you can't. Just make decisions and hope....
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edj3, Fairydragon, GiddyupGirl, ShetlandPony, runor, jaycee49, and AliceBastable: You are truly a lifeline for me at this moment. All of you took time to help me by providing your wisdom. You don't know how much it helps me. I cried several times on and off today but there were moments that were lovely too. my mind still goes down the dark rabbit hole but then I try to help myself by either crying or changing focus. My biggest worry is the upcoming scans. I am terrified as I am unsure how I will take it if things are worse. I still hope very much for the best.
Thanks to all of you and hugs and prayers to you all. I will attempt to sleep now......or at least give it a shot.
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Sorry Rosabella - I forgot you and your wisdom as well.
I don't want to forget anyone as you all help so much.
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I don't consider this a negative attitude, but every njght b4 i go to sleep, I pray that God will just take me now in my sleep, and then i sleep like a baby.
Yep, I'm ready to go any time.
Sick of all this now, but I'm not negative, just accepting the inevitable.
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understandable Lita. There's a quality of life issue. I hate how religion and the government control and decide what we do with our own bodies. None of anyone's biz.
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Lita: I don't think that praying for a peaceful death is a negative attitude at all. I think that physical life is overrated, we leave when we have done everything we had to do in this world, it is not written in stone that we ALL must die at an old age, then why not want to leave while we sleep? For me it would be a blessing
Personally, I have prayed every night for the same since my diagnosis, but of course, it seems a selfish attitude towards others, as if being a burden was very considerate.0 -
Alice, your sister TEXTED you that your mom had died?! Are you serious?! There are no words. No words.
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Runor, yep, that's how the Freak operates. She is very consistent at doing and saying the wrong, least human thing. When our Dad died and I got kind of weepy at his memorial, she came up and said "I know he meant a lot to you." WTF? That's what an acquaintance says! Best I can figure, some particularly cold-hearted aliens did a body switch on her years ago. 👽
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Alice, I wonder about those kinds of people. I know someone who, while very well meaning, never fails to say the VERY WORST THING in any given situation. My mouth has literally fallen open in stunned disbelief. I shake my head, no, you did not really just say what I think you said, are you kidding me with this shit? I think there are some who suffer from a severe form of emotional terror and when faced with strong emotions, or even not so strong emotions, they literally freeze, like a deer in the headlights. And what comes out of their mouth is evidence that the brain has ceased to function, locked, unthinking, in terror. It's not that they're mean, but in the face of crisis they cannot react correctly. My husband is like that. It's a form of social retardation. Once, while trying to talk to me in an alluring way, meant to flatter and woo me, he said my ears reminded him of eggs. Really? His idea of sexy talk is that my ears look like eggs? I've also been told I remind him of Witchy Poo and I have beady eyes. Just stop talking, Buster, you're digging a deep hole. I think your sister might be like that. Does not play well with others.
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People. Can't live with them, can't shoot them.
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Edj3, ya made my day!
Runor, my sister is bipolar but untreated for about 30 years. Unfortunately, back when we were growing up, my Mom alternated between getting in screaming matches with her, and telling me "Don't do anything to upset her, you know how she gets." She was still saying that more than half a century later. It never occurred to my family to take her to a doctor for it - and I'm not sure treatment was all that great in the 1950s and 60s. She was treated for a brief time in the 80s after an involuntary hospitalization, but never followed up after the initial diagnoses, so she never renewed the prescription for the lithium that helped her tremendously for the short time she used it. She won't go to a doctor for ANYTHING, always with some creative excuse, but I'm pretty sure she's afraid they'd bring up her erratic behavior. She has alienated so many people over the years with her abrasiveness. I'm sorry she has this medical problem, but it's frustrating because she's paranoid and claims everyone else has a problem, and won't help herself. At this point, I don't know how much of her behavior is due to the bipolar issue, and how much is habitual from nobody confronting her about it for decades. But I just can't deal with her any more. I limit contact to texts lately, but shut off notifications because she texts non-stop, alternating between descriptions of fairly normal activities, obsessing over food (she claims dozens of undiagnosed allergies), and insults out of the blue. It's exhausting and unpleasant. We live in the same city, but I haven't seen her since my kidney surgery last September. She had said she'd be there, then FORGOT, so Hubby texted her, but she didn't show up until I was in the OR. When I got back to the room, she said she was tired and going home. Some support. She and her adult children are my only close relatives. I stay in touch with my niece and nephew via FB, but my sister gets upset about that, too. She says I need her permission. They're middle-aged!
Whew, guess I needed that particular rant. Sorry for gnawing your ear (or eyes) off!
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No I get it.
My own sibling story isn't quite as wretched but I'll share anyway. My only full sibling lives in the same metro area as I do. Years ago, he and his wife made a decision to shun me because I'd separated from my now ex-husband. Here's the kicker: I didn't notice because there was no change in their behavior toward me, we never saw each other.
We still rarely talk. I did let him know about the BC, mostly because if I'd come back with a genetic issue then he would need to think about telling his six kids. I didn't, and I haven't talked to him since, what, April?
Oh and they did apologize for the shunning. Sort of. My SIL said "I'm sorry we shunned you . . . (wait for it) . . . but we believed we were doing the right thing."
Yeah, that's not an apology.
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Sorry to go back to an old topic but I've been thinking about if I use battle or journey or fight or whatever. I decided that the best I can do is clusterf$ck. Here's the Wiktionary definition. Fits perfectly.
A chaotic situation where everything seems to go wrong. It is often caused by incompetence, communication failure, or a complexenvironment.
Plus my sister is really boring.
BTW, Bi-polar disorder is pretty serious. I'd still rather have that than cancer (maybe). The side effects of lithium are brutal. I have a friend with bi-polar and he cannot function on lithium. There are some newer drugs that are slightly better.
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Alice, what was life like for your sister's children? And your sister has no say over who her kids relate to or not. She does not own them. I know, shocking!
Edj3, my brother lives 15 minutes away from me and we do not speak. Do not see each other. When he heard I had cancer it didn't even warrant a phone call. I agree, that was not an apology.
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Runor, my sister's kids are nice, but complicated. After the parents divorced, they used the kids as pawns - shared custody, but something like two weeks with each, so a lot of going back and forth. And when one parent moved to a new school district, the other had to move also. The two kids grew into compassionate, intelligent adults, but my nephew is indecisive and it took him a long time to settle into a good job and good relationship. If he divorces #3, I'm keeping the wife and dumping the nephew - she's terrific. But the nephew has a great sense of humor; he told me he was going to take his mother's texts to a poetry open mike night. My niece is very driven, doing Alzheimer's research at a university, plus getting an advanced degree in psychology. I think growing up with her mother has made her want to understand the workings of the brain on several levels. But she's more of an enabler and apologist. When my sister would start snarling at my mother or me on holiday gatherings, the son would apologize on her behalf and try to diffuse the situation. The daughter seemed to think we should just take whatever her mother was dishing out.
I know it's rough for the person who is bipolar. She is living in a different world than the rest of us, surrounded by pinatas that she thinks are grenades. But after nearly seven decades of being my sister's verbal punching bag, I'm pretty exhausted. She denies she is abrasive and abusive, even when I have the insulting words she has written. I guess I haven't felt like letting it bounce off me in the last year when I've had so many other things going on. And with our mother gone, I'm not sure I care.
It's sad how many of us have sprained or fractured relationships with siblings. Hubby's family is large and noisy and they all get along fabulously. They don't necessarily see each other often, but there's never any drama or whining with any of them.
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Mental illness is a bitch. If your sis didn't have bp then I'd be shocked about the text on your dad's passing. Got a cousin with bp. It's wild.
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I can relate. My husband is BP. He takes his meds otherwise we wouldn’t be together. Before he was officially DX his mood swings were brutal. He’s much better now but every now and then he reverts back to his sharp tongue and abrasive manner. No fun for those of us who bear the brunt of their behavior.
My family is highly competitive and noisy. My husband's family is the exact opposite. My family talks too much. His doesn’t talk enough. Both families have the “black sheep” who tries to manipulate everything and everyone.
I wouldn’t put up with being the punching bag any longer. When is enough enough? My brother who was the BS has ostracized the rest of the family. It’s really sad but his choice. With our parents gone he doesn’t have anyone to run interference for him anymore. He lives in town but we never see him. The last time he contacted me was to ask for financial help. It had been 7 years since I had heard from him. Tells you everything you want to know about our relationship or lack of.
Diane
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I don't know anyone bipolar but I know about lack of empathy from certain family members. I also made the personal decision to cut ties from people who don't give a rip about me and be happy for once. I don't need to retell history that is all over the earlier pages of this forum but sometimes cutting ties is best for everyone. I don't have to walk on eggshells or worry about verbal/emotional abuse and they go about their lives as well. It is a win/win. They don't need to pretend to care either which is fine as well.
Letting go of toxicity whether it is caused by BP, mental illness or just plain being assholes benefits both parties and will make ourselves feel better in the end. It is just hard to do. For myself, it was like a death in the family as I new I would never see this person again but for myself, life is more peaceful and I feel stronger for having made the hard decision instead of both parties trying to hurt each other. We both get to focus on our families, I focus on walking my path alone and being more independent. I have an older brother and family that calls and we go out for coffee or have the odd meal together. I see them every week and that is enough for me. They spent months taking care of me and my house, it is nice that everyone gets a rest.
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I talked to my husband about his money/retirement comments. He said if I thought we had enough money to spend then he had no problem with me spending it, as long as it didn't set back our retirement. So I had to tell him that I thought early retirement isn't a realistic goal anymore because my risk of recurrence is so high and I've looked at ACA insurance and it's just terrible in Arizona so I'll need to work until I'm on Medicare. It took some convincing, but I laid out my recurrence risk as 30% over the next 10 years + 1-2% every year thereafter. Of course those numbers vary wildly depending on who I get them from, but 30% is about the average of what I've been given and the 1-2% thing is in a lot of literature. He took out his calculator, did the math, looked at the number, said he must've done it wrong, and then did it again. Then he got up and went for a walk.
When he came back, he said he didn't think we should change any plans because we can't know what's going to happen with health insurance. I disagreed and said we should probably do more living for the moment instead of saving for the future. Even if insurance is a non-issue by the time we've saved enough, who knows if I'll still be alive and cancer free by then? I don't know if he's still in denial of that part (though he did the math) or if he's just so intent on the idea of retiring early that he's not understanding that I'm not super enthusiastic about saving for a future that I may never see.
Can a person be a little bit autistic? I seriously think he might be. I've always kind of wondered, but typing this all out now it seems kind of likely.
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“A little bit autistic” could be Asperger’s syndrome. In any case, maybe give him time to digest and mull over these new ideas about living for the moment vs. saving for the future.
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This is probably the wrong perspective to have, but I'm spending my money now. I do keep about 3-4 months worth of living expenses set aside in case something happens to me or my husband (our income) and hope that will be enough time to get us assistance should a turn of events lead to that. I'm not paying huge premiums for a long term care insurance plan. My experience with my mother having to be placed in a facility and then my in-laws needing help, it seems to me the less you have the sooner you can get Medicaid. So, that's my thinking....Aside from my husbands business credit card, we have no other debts at the moment, and we're renters, we don't own any real estate. We do have medical insurance through my employer and we both have life insurance policies. No retirement for me. Kudos to those able to do it!
Edited to add that there are plenty of medical bills, not sure that qualifies as actual debt. I didn't choose to use my insurance. Currently around 6K, and of course still going. Not using my money to pay these off in full, paying what I can, when I can.
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