STEAM ROOM FOR ANGER

Egads007

Mustlovepoodles - that story was a jaw dropper! I thought my friend was bad! Honestly don’t know how you managed to keep your composure! How did you react??

Mommy & Marijen, I had a friend that was fond of saying ‘I’m going to the theatre and picking my seat!

Artista964

I agree with egads, thought the same thing. I wouldn't want my mom to go through the pronlems i had with bc and cont to have, is she knew which mine does not. I wouldnt get hung up on the words. My mom is clueless as well and says and thinks things that are way off. That's why interaction with me is on my terms only and not often. I already have anxiety issues pre cancer and dont have it in me to use what little energy i have to fight something or get upset about it that i know will never change.

runor

I don't feel my cancer is or should be a secret. I am a very 'say it as it is' kind of person. I don't care if my mom tells someone I had cancer. What I do react to is the minimization, the invalidation and the dismissal of the situation. Examine the following two statements.

My daughter had breast cancer last year and it was a tough year, but she's doing better now.

My daughter had a little run in with breast cancer last year, but she's fine now.

One is honest without being over the top descriptive. The second makes a joke out of it.

Okay. I am a mom and I do not know how I would cope if my kid had a cancer diagnosis. I would freak right out. But my mom is The Queen of denial and the absolute master of saying exactly the wrong thing at the wrong time. It is her skill. She has, at every turn, acted like this cancer was no big deal and maybe that's what she has to do to cope. But that approach is pure death to me. That is not how I roll. And if she wants to act like I had my ears pierced or a mole removed, then please, for the love of god, don't repeat it to me in a phone conversation! It is hurtful and insulting.

If my doctors had dismissed my little run in with cancer I'd maybe be dead by now, or soon. It was a tsunami that I was not prepared for. I am indeed getting my legs under me again, until round two, which I fully expect. Will my mom be there asking if I'm having another little run in with cancer? Shoot me now!

Artista964

You reinforce why my family doesn't know. I know how they are so I keep a lot of stuff about me from them, for literally my sanitys sake. But if you cant, you need to shut her out. In one ear, out the other. My bro is great at this and im not bad at it either. Who cares whay mom and others say or think. Screw them. Vent here but dont carry it on your shoulder irl. Its not worth your mental health.

mustlovepoodles

Egads, I was stunned, to say the least. My mother has never had much of a filter, but in her old age it disappeared entirely. I gave her the benefit of the doubt because she was very ill with end-stage renal failure, so maybe the electrolyte imbalance made her do it. Probably not, just her usual modus operandi. But I did decide not to share my cancer issues with her after she told me emphatically NOT to have reconstruction because it her friend had recon "and she DIED!" She was convinced that recon causes cancer recurrence "and you don't need those titties anyway." Mother was an old Labor & Delivery nurse, so this, of course, made her an expert in everything including breast cancer.

VL22

When I told my mom I had TN breast cancer she said, “you know it likes to go to the brain?”

Thanks Mom!!

marijen

I think mothers are not supposed to say things like that and yet I believe my mother would have.

Artista964

Dont mean anyones mother here but some women shouldnt be mothers.

M0mmyof3

I agree with that!

sas-schatzi

Mommy, so sorry with the brother issue. My concern is how far from really good medical care. I moved to central Florida, Brevard county directly across from Kennedy Space Center in 1992. We checked out schools first and communiity. I never thought to ask about hospital /medical community. The community is great. The schools were superlative. But once we were settled in, I was in shock about what was available in the whole medical community. I'd grown up in Detroit----great hospitals and docs, then onto Cleveland---even better, then onto Akron,Ohio. Great and what wasn't there was available in Cleveland.

For really good care I think Orlando, Tampa, Gainesville, Jacksonville, Miami. Frankly, if I weren't a nurse I'd be dead. I knew how to seek out the best docs and treatments.

Just had two friends move up to Georgia They moved to Thomastown. They bought a renovated 2500+ sq ft house for 62,000$. 10,000 people. I love the thought. But it has a very small local hospital and is an hour from any major facility. They are sisters 60 & 70. I find that scary.

I so get the idea of moving back to our roots. Just a thought about access to good care.

Of course, you could just be miles from the most superlative care in the world Where's Mayo?

sas-schatzi

Just as an example of concern of living in the hinterland. Dear Twin was in a very small hospital the last week. 1. they didn't pick up right away that he CBC showed bone marrow suppression. 2. her port of 8 years clotted with a blood draw, they didn't know what Cathflo was and that it could be used with ports. They "looked it up" and said it could only be used with Piccs. From Florida, I'm saying ask about Cathflo and do they have a Hematoligist on staff. The next day she was transferred to a larger hospital for a hematologic evaluation.

They took out her port-------hmmm didn't attempt Cathflo........She ended up d/c in a couple of days, but no answer to bone marrow suppression. But her numbers got better. Oh, not on chemo, not on any new drugs, but Platelets were 45, RBC< normal(new), WBC showed three drops under normal over 3 days. But came up on last day to bottom normal. She was in Michigan. You get above Saginaw / Bay city, it's a medical wasteland until you get to Traverse City

That was the phrase I was looking for for my own county. Medical wasteland. Obviously, it's improved over the years. But not close to the big centers

M0mmyof3

Sas, I would only be about a half hour from medical care. We had already been looking at that situation and talking to family members about the quality of care at the two hospitals we would with in reach of.

sas-schatzi

Mommy, great. YAAY 1/2 hour is doable. When I moved from Akron in 1992, it just wasn't on my radar. Schools were the absolute priority. I had always lived where there were major medical centers. It was a shock when I realize how backward my county was.

HollyDollyD

I went to a MH First Aid training yesterday. The speaker compared MH to cancer. Umm...no. Just no. Yes, I understand that it is hard for people to find analogies for mental health issues. Yes, I understand MH is underfunded and employees are underpaid. Yes, we need to do more for all of us with anxiety, depression, suicidal ideation, psychotic disturbances, PTSD and all other mental health issues.

However, it was so triggering to hear that. I literally had to get up and get out quickly. Then I got to a bathroom and sobbed. (Hello PTSD). And with 12.5% of the female population in the US facing this, not to mention those who have a relative or friend with BC, I think the training needs to be handled differently.

And please don't ask people to do physical exercises in MH training without disclaiming for disabilities. It's great that there are kinesthetic ways to remember the exercises. It's frustrating that it was, "Stand up and do this" with no...if you can, and if you want to sit, it's OK, too. I still cannot get my arms above my head.

I spoke to the trainer afterward, kindly, gently and respectfully and voiced my concerns. She understood in a heartbeat and the look of horror on her face when she realized....I know she won't ever make the mistake again. But the other trainers.....and then she explained that part of their literature actually teaches that comparison. Just....NO.

Am I overreacting? What do you ladies think?

Meow13

I heard one BCO member say that she need sometime off or something to cope with her recent diagnosis of breast cancer and her coworker looked at her and said "so what, I have to live with AFIB". Oh my God, no it is just wrong.

Cancer, is bad the treatment is bad and the outcome is uncertain. It can grow out of control and take your life. And that is the physical reality not even the emotional one.

I think it is not right to compare anything to cancer.

marijen

My sister said something similar to that, that she has a heart problem and more likely to die. Like cancer is no big deal.

mustlovepoodles

Of course cancer is a big deal, but i think we need to recognize that other conditions are a big deal, too. Its not a contest. There are no gold stars at the end.

My mother had thyroid cancer when she was 48. Had her thyroid removed. Lots of people live with low thyroid, right? Well, try keeping all those hormones regulated when you have NO functioning thyroid, not even a little bit! She suffered with a LOT of side effects. You know what people told her? That she should be glad she had thyroid cancer. That she was lucky to have "the good kind of cancer." I kid you not.

Mother also had atrial fibrillation, a condition which causes disturbing heart rhythms and palpitations. It caused her to have mini strokes. Those mini strokes could lead to major strokes. Mother lived in mortal fear of "the big one." She likened it to the sword of Damocles hanging over her head. Cancer didn't scare her at all, but A-fib did.

Artista964

i agree. I'd rather be in my boat of uncertainty than folks with dementia or als that know life is shorter for sure and very debilitating. All terminal illnesses suck.

Meow13

I am not saying AFIB is not serious the comparison and the lack of compassion to a breast cancer patient is. That coworker balked at her for needing emotional time off that is what I was saying.

Lula73

I'll wade in just a little...my frustration with those types of comments comes when someone talks about a totally treatable condition being the same or worse than cancer (ie diabetes, many MH conditions, hypertension, high cholesterol, etc). The difference between the treatable condition and cancer is that the treatable condition has predictable outcomes...you take your pills/insulin, follow the advice from the nutritionist/counselor/therapist and the condition/disease is treatable and manageable with low mortality risk. If you choose to be non-compliant, there are no guarantees. With cancer, it does not matter how well you stick to the treatment and follow the advice from your medical team, it can still rear its ugly head and take you out. The treatment for cancer is also on a whole different level compared to almost any other condition's treatment. It's not as easy as just taking a pill or shot. And isn't that part of what we complain about when someone says to us, “oh you have BC...that's easily cured nowadays" and blows us off? I'd rather take insulin injections everyday for the rest of my life vs deal with cancer for even 1 minute. Yes, conditions like A-fib are just as serious and can take you out. However, if it does take you out, odds are it will be quick. Cancer, not so much. Many times, too, the person making these comments has never dealt with a cancer diagnosis themselves. If they had, those words more than likely would never be uttered. Just my thoughts at this moment.... In the next moment I may have different thoughts or I may forget them altogether - thank you letrozole!🤨

marijen

Lula that was a great analysis. If only all medical personel would have your understanding of this disease and it’s emotional and physical toll. Thanks.

Artista964

not trying to start something. But if you had to choose, bc or als or altzheimers. The latter 2 you don't stand a chance for even remission. Just curious if you had to have one of these, no choice, which. And yes, cancer all of them suck. But the small chance my dad has pls has sure opened my eyes. We dont compare, but yeah we do inside with the id rather have this over this. It has crossed minds at least once.

Of course we dont want to hear others downplaying it to us.....but to me it helps me cope when i feel down. We dont say to others there are worse things to deal with, which if we're honest to ourselves, is true.

Here's the thing. I have clinical major depression and anxiety dxd in 1994. Runs on dads side, including dad though he manages without meds. I've attempted suicide before and was locked up in a psych ward. Aside from figuring out the best med combo, you are kept busy all day. We had a schedule of different types of groups, visit with our psychiatrist and therapist, but also exercise, yoga, meditation and art therapy. You couldnt say know. I cant do yoga. Tough, you come sit in the room and listen. Same with exercise. Too bad. You dont want to do it fine but you'r coming outside to watch. It was like boot camp much of the day and in between you are having labs done and trying different meds. Worst experience mentally and physically in there. Then it was 6 weeks of partial hospitalization where 8 am till 4 pm you are busy there.

Point is i cant believe how many people think its a good place to get yourself collected. Hell no. But i did learn a lot about cognitive behavioural therapy where at some point if you keep your way of thinking which isnt doing anything but making you miserable, you will crash before you know it. I am amazed at many stage 4 people way of thinking when it comes down to it. And of my dad too who is charged not to complain so much but to keep going with what he has. Inspiration from others is huge. People who know of my history call me an inspiration. Young guys in the gym approach my dad amazed with his determination and work ethic. That feeds back to you and helps keep the spirits up esp when you are not having a good day.

smwusaf

I would rather just be the healthy person I thought I was. I will say that I feel more empathy when people tell me their current crisis or diagnosis, whatever it is. I try to give them the feedback they need because whatever it is, it's the worst thing at that moment for them. No comparisons, no stories of other people I know who've dealt with it or had it worse. One thing I know, I want to listen more, speak less.

As Mustlovepoodles said above - there are no gold stars at the end, we all have difficult histories or stories. Listen more, speak less, love one another.

Lula73

Rosabella- the difference is you are making the comparison for yourself. It’s not someone else telling you their situation is worse or downplaying your situation. Comparing the situation we find ourselves in to what others are going through or in our own minds what it could’ve been besides cancer does help keep us sane. But we are doing that for ourselves. An extreme example would be being pretty helpless and in pain after mx or being violently sick during/after chemo and the nurse/dr/nurse nav/social worker telling you to figure out how to get to the bathroom yourself, or you’re a big girl not a baby-you can handle the pain from surgery without any medication for pain-not even a Tylenol, or you’ll just have to clean yourself up and everything you threw up on because you know, it could be worse...you could have ALS. But all your limbs work perfectly so the surgery/treatment that put you in this situation through no fault of your own is of no consequence.

smwusaf

Agreed with Lula, it is all dependent on who is making the comparisons. I'm thankful every day for what I know could be worse and isn't.

Artista964

i agree lulu and did say that it isnt right for someone else to say it.

With depression for years i heard snap out of it, its all in your mind, things could be worse, i have depression too (mind you the kind everyone has from time to time), you'll get over it, you don't need meds, and on it goes. It's sad how misunderstood clinical depression is. With the recent high profile suicides i hope people catch on. You never know if someone is an inch from going over the cliff, and a stupid remark can send that person over.

mustlovepoodles

Rosabella, i hear you. I also have a personal and family history of depression and anxiety. Twice hospitalized. Some people think that going to rehab is a little vacation away from family and job demands. They have obviously never been there! Your description is spot on. The hardest work I've ever done was to crawl out of that suicidal pit and reclaim my life.

bcincolorado

Reading this had to laugh. Getting dementia might be a blessing sometimes since you would not have any idea how stinky things are really at times.

Lula73

bcincolorado- that can definitely be true. My DH's grandmother had Alzheimer's but had no clue she had it. She lived in her own little world where she thought she was a little girl again. Boy did we get an education on how she grew up, not having much, and what that looked like. What a blessing compared to Father in law's friend who had Alzheimer's and knew it. His facial expressions when he would come back to reality were absolutely heartbreaking.

Artista964

Actually, pts know. They just can't communicate any more and just stare. Its at the end stage they dont know, but along the way, they certainly do if not the name but the loss of function happening.

Bffs mom is almost stage 7 of 7. Even though years with it, shes aware she cant find her words and tells us with frustration and anger. She cant always feed herself, and knows. She gets mad. Sits by herself at the dining table out of embarrassment. 10 years of agonizing so decline physically, mentally, emotionally with 0 chance of remission. Hardly find anything about it funny. Try being at someone's side watching their cognition decline and feeling their depression, anger, fear and frusrations. For 10 years and counting I've been hearing i want to die. Hardly a chuckle bcincolorado..