STEAM ROOM FOR ANGER

Lula73

So sorry to hear of Bluebird’s passing. She was a big part of these boards on BCO and always provided good input. Her personalized signature quote is one of my favorites. I know she would want all of us to continue in her footsteps with that quote:

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me. Diane

Kattysmith

Yeah, I'm pretty good at the "don't ask or I'll kill you" 'tude . Next week I'm going to get my hair buzzed to about a 1/2" and go from there!

DancingElizabeth

I am sad to hear of Bluebird's passing, as well..I hate this disease...

runor

Long rant. Probably ranted about it before and can't remember that I did so this will be a repeat rant. Next rant ... thanks to tamoxifen I can't remember shit. Seriously. But that rant is for another day (which I will forget about).

I HATE how this disease has made me a person of comparisons. How did this happen? Is it me or is it everyone else around me? It's absolutely insane that a tragedy can no longer be a tragedy but is instead judged on a sliding scale of pros and cons, judged against cancer. Let me explain.

I have a friend. Diabetic. Stubbed a toe and toe did not heal. Toe turned black. Shit went wrong. They took off toes. Then most of her foot. And as the badness kept spreading they took her foot off above the ankle. When infection set in days later while still in hospital they took MORE of that leg off, to just below the knee. She spent the next many months trying to recover. Healing for her is very slow because of her diabetes. When others would have been walking on a prosthetic, docs advised her to take things super slow and easy. They didn't want anything to anger or damage her stump. She has been miserable for a long time, mostly immobile waiting for her stump to heal really, really well.

Then the toes on her other foot began to get funky. They took off the front half of her remaining foot and MORE time was spent in recovery. She was getting on her foott, trying to balance on half a foot and one fake leg. Today she sent me a text. It said, "Back in hospital. Got infection. They took my leg."

My heart hit the floor. The change in her life is catastrophic. She cannot do anything for herself. Her Husband's life has changed. He has to do everything for her. They live in a house where you have to go up a flight of stairs to get to the living area from outside. They may have to sell their home and move somewhere else where she can function in a wheelchair.

And as I thought about this a thought edged into my head. The thought was, this is worse than cancer. At least for me, at this point, I can carry on with my life as before. Mostly. There are a few glitches and pains and lymphedema, but they pale in comparison to losing both your legs to diabetes.... COMPARISON! There is that dirty word. Comparison? Why is everything like that? Why can't my cancer be a tragedy, your cancer be a tragedy and her leg loss be a tragedy? I thought maybe it was just me thinking this way but no, I hear these words issue forth from the mouths of many people. I sometimes feel like I have to apologize for feeling shitty about my cancer because other people have it so much worse (they win) until my cancer comes back in my bones or brain ( ha ha, now I'm winning!) and then it will kill me (boo, I lose!) I wonder, do I have a right to feel bad in the face of much greater misery? Real misery and suffering. And yet I feel bad despite this and that makes me feel bad that I feel bad. I hate myself for hating myself. It's circular and stupid.

It staggers me sometimes, drops me to my knees, the misery humans can suffer. In their minds and in their bodies. It amazes me how humans overcome and conquer, how they get on with the business of getting on, good or bad, it must be done. I wish I didn't do that insane comparison, that questioning of whether or not I should be allowed to feel bad. Which only makes me feel bad. But right now I feel very, very bad for my friend. She is in a black place and I do not know how to help her.

candy-678

Runor---

BLESS YOU !!!!!  DAMN, YOU HIT THE NAIL ON THE HEAD !!!!!!  

rockymountaingirl

Therapygirl, I just saw your May 15 post, and wow, it sure hit home with me. I, too, have found the emotional impact of this disease very hard to deal with. Surgery I got through just fine, chemo I'm sure I can manage (though not looking forward to it!), radiation I can handle. The shock, the uncertainty, the disruption of my life -- those are the hardest things for me to endure, and some of the people in my life, including medical people who should know better, have NOT been willing to even listen to me when I try to talk about such things. Very unhelpful.

The best advice I have received is to have as little as possible to do with the people who are unwilling or unable to help you deal with the things that trouble you, and rely as much as you can on those who are willing to listen and try to help. In my case, one person who has been helpful is the social worker at the medical center where I am receiving treatment. She is my go-to person when I need someone to listen and help me deal with the stress of my situation. Another person who has been helpful is the nurse navigator for breast cancer patients. She's great if I need to find out who to talk to about something, or if I'm having trouble getting a question answered, getting an appointment set up, or getting something done.

You should not have to put up with people who make it harder for you to get through this. So, if _{you need a little empathy, encouragement, or just practical help, and you aren't getting it from the person who ought to be providing it, I suggest looking for someone who can fill the gap. Your "someone" might be a nurse, a fellow patient, your aunt Sue, your next-door neighbor, or, like me, you might find that there is a social worker or "navigator" available to you who can help you deal with all sorts of problems. This is not a total solution to the problem of insensitive, uncaring, or unhelpful healthcare professionals; you will still encounter them. But if you can find a way to work around them to get what you need, at least some of the time, it may make your life a little better.}

Artista964

wow, sorry to hear about your friend. I'v said before I'd rather be in my shoes with shitty ses than my dads. Seems the falls he had have damaged nerves to where his left arm is useless and left leg isn't great either. He needs my brothers help for a lot of things now. At least im very functional still despite bad fatigue and memory stuff, achy joints, insomnia, etc. So many people have it worse than me and my care for them trumps my woe wes me, poor me ever time.

Lita57

Rocky and Therapy, hopefully there is a cancer support group that meets in your area. I found that very helpful my first year dealing with Mr Cancer. I don’t go much anymore, other than to help support the new people.

Not trying to defend them, but drs and even onco nurses in my area are so over-scheduled these days.

Palliative care docs can be a good resource too.

But it continues to be a struggle, no matter what.

L

Artista964

More like devastated. My dad has been suffering from left side weakness for about a year now. He sometimes loses his balance and falls. His left arm is basically useless. After tests ruling out things like stroke and ms (mri, nerve conduction test, emg) docs best guess is pls (Primary lateral sclerosis) which is kind of like the non fatal form of als. The disabilities are the same but als you have 1-5 years average and pls 10 to maybe even 20. I'm trying to find a motor neuron problem that doesn't necessarily progress and has treatment. None with these diseases. Neuro confirmed today the damaged nerves are causing the signal to move in some muscles not to work or fully. I have read nothing reassuring or hopeful with any if the mnd.

Anyone here know of anyone that can share a story about. Tia. I should change from rosabella to devastated. Love my dad more than life itself. Felt like i have a death sentence, in fact id take the bullet for him no matter what it is. Other than this he is in good health with 0 issues with anything else. He was always wowing his doc with his bp, cholesterol, playing tennis up to 78. He's 79 now.

😭

Micmel

holding your hand roseabella. I’m very sorry.

Artista964

Thank you micmel. You are so kind ❤

TaRenee

Karrh, the Gulf Coast is a HOT MESS for sure. I miss living there but I don’t miss the humidity. Tho lately we have the same weather... dang rain.

This summer I’m contemplating shaving my head. I mean, the hot flashes are awful already, when it actually gets hot here... but I haven’t decided for sure yet. My hair is already thinning (and I’m not taking chemo, just Tamoxifen). Bald may be beautiful for me this summer

Alive4Five

Runor, I feel for your situation. As well as the others here. I've been away from BCO for awhile. It wasn't an easy thing to leave, considering you ALL understand so much more about this journey. First of all- F'k cancer. I'm not entirely sure that I am Ned; as per recent tests of my other, ahem, parts. Tamoxifen has been a Jekyll/Hyde. @Runor, you mentioned the memory crap. Boy are you correct. And, after a year, I subsequently had two strokes which has further impaired my thinking processes. In a Big way. It, (cancer/surgery/chemo/tamoxifen) has next to destroyed so much of me. I scream, I yell, I get thoroughly pissed off some days. And marital issues that I can't EVen..not now anyway.

Tamoxifen has been linked to ovarian and or uterine probs. I did not decide to have a hysterectomy or anything else. Now, I'm looking at biopsy next week of said parts. I canNot wrap my mind around losing what's left of my femaleness!! Even if it's not 'C' I know they want me to have surgery. Tamox threw me into early menopause. Ugh. And it's been a loong road filled with potholes. I also used to love Sudoku - and by all rights, was really good... I can't even do the easiest ones now!

I've had two sons marry. Another miraculously survived a head-on w a tractor trailer, and is a brand new papa. My youngest thinks I've lost my mind...lol... He's almost right!

I'm broken hearted over the losses here. Hence another reason this is difficult.

Guess I'll end my rant. Ladies, I have missed many of you, and look forward to getting re/aquainted and visiting with newer sisters.

Thanks for listening... Big ((hugs))!

Meow13

I hate it too. I hate the disease I hate the treatment I hate the worry. I want to feel really good again. Every part of "the journey" sucks.

Alive4Five

Meow, ME TOO!

Micmel

I second third and fourth that! It all sucks.

Thinking of you roseabella. Hope all is ok. 🌷

Much love ~M~

Lula73

Rosabella-I’m so sorry. I wish there was more I could say or do to help. (((HUGS)))

TARenee-are you by chance taking biotin for your hair? If not, 5000mg a day can really help.

Alive4Five-ovaries, tubes, uterus, and cervix do not define your femaleness, sweetheart. The tamoxifen blocks all the “femaleness” you’re getting from those ovaries anyway. I had everything removed and I could not be happier. No more periods, no more discharge, no more worry about getting pregnant (I’m a grandma after all), no more PMS, etc. hope it’s not TMI, but I’m most happy that I no longer have various smells from down there especially after relations with my DH. Always fresh and clean 24/7. I still feel pretty and female. My sex drive isn’t as high as it was but DH and I can definitely get it going. And now it’s really easy to achieve the big O from my G-Spot with just penetration and I am now able to achieve multiple Os from clitoral stimulation where before it was 1 and done. It’s definitely not all gloom & doom

DodgersGirl

this is not related to my BC diagnosis but I need a place to vent and hope you will allow this bone cancer rant here.

I am just over a year out from dx so you all know what kind of year it has been.

My elderly dad fell outside about 2 months ago and broke part of his hip which required emergency surgery and nearly 6 weeks of care in a rehab facility. My elderly mom has mobility issues and other health issues so dealing with all of this has been physically and emotionally trying. DH has been taking mom to see dad every day for those 6 weeks as I am working full time and DH is not.

Dad returned home last week but he still has balance issues and issues with not picking his feet up high enough when walking a.k.a. a fall risk.

Dad is also 100% guy and isn’t going to be told what to do. sigh. So I have been trying to get him to understand that he has to use a walker right now to try to prevent another fall. He says he knows that but then takes off without it. So I have to be the bad daughter and keep telling him he can’t do that, can’t risk another fall cause I don’t know if mom can survive another incident. Trying to show him we aren’t trying to dictate his life but that he MUST walk more carefully and pay attention and use an aid to help with balance. He says he understands and then does it his way.

The whole time he was at a rehab facility he worried about my mom. They have been married nearly 70 years. I had hoped if he could see that falling could hurt my mom, he might be more inclined to listen to others about not walking alone.

Well, today he fell in the yard and landed on his knees. He is now en route to PCP.

What works?? What can we say/do to help him not fall? Watching your parents age is not fun.

Thanks for listening. Thanks for being here thru it all.

TaRenee

DodgersGirl, that is such a hard thing to deal with. You don’t want to take away independence but dangit, why can’t they follow OUR directions (I mean, I used to listen to my parents...) Hope your Dad is okay and the fall doesn’t require more time away from home.

My rant for the day: my memory is getting so friggin bad. Today I looked for a sharpie I had been using labeling boxes in my classroom. I finally gave up and went and got another one out of my desk. I finally found it. When I got home. In my pocket. Seriously?!?!?!!!!!! I had been cleaning up my hair and makeup items (I teach Drama, hence the makeup and hair stuff at work) for about an hour. Someone called my room so I stopped to get the phone. Went back to what I was working on and no sharpie. I looked everywhere (I thought). It was so aggravating. I also have managed to lose a 10 ft roll of Velcro that’s i have been using for a class project. (No, it was NOT in my pocket). Bl

Mominator

DodgersGirl,

I'm not sure if we can say or do anything to help him not fall.

I've been watching my parents age, especially these last two years.

I think the best we can do is express our worry, and do gentle reminders. We need to walk the fine line between being helpful and nagging. Now matter how much we worry, or nag, the only behavior we can change is ourselves. We need to accept that and let them make their own mistakes. We don't want to hurt the relationship with them.

Big (((HUGS)))

Mominator / Madelyn 

DodgersGirl

Mominator— thanks for your kind and do true words.

Doctor today told him no walking outside alone and without a walker so will see how that goes.

Again thanks!

kathindc

DodgersGirl, I know how you feel. Since the end of March, my husband has fallen six times and I've had to call EMS for five of those falls as he has no upper body strength and I'm not capable of getting him up. The sixth fall happened at the grocery store and two very kind gentlemen got him up. We did have to call for transport because he hit his head. He is a very stubborn man. Uses the walker outside of the house but will not use it in the house where five of the falls occurred. He will use a cane in the house occasionally. Yup, he isn't using it when he falls. Like your dad, my husband doesn't pick up his feet. He has developed a shuffle. Doesn't want to be reminded of that. He does hear the squeak when walking on linoleum floors when going to doctor appointments which hits home that he needs to get those feet up. I have become the bad guy in all of this for trying to encourage him to pick his feet up. To shed a little levity on a very frustrating situation, it's a male gene thing. I wish you strength to get through this.

CindyNY

Dodgersgirl- both my parents have passed on. But back when they were having balance issues we installed railing throughout the house. My mom had neuropathy, a dropped foot, I'd sing her a song while we were out going to the Dr - "pick it up Katy, pick it up." Silly but it reminded her she had to think about lifting up that foot. It's harder with a dad. Best of luck.

Lula73

Dodgersgirl- I'm so sorry you're Dad is at this point. It's a difficult one. We went through it with my father In law and then with my mother in law. It was her 3rd fall that she didn't recover from. My girlfriend is going through the same thing right now with her dad. He managed to survive his last fall but things are not good. I'm not saying this to scare you. I'm not telling you this like those people who tell you the worst cancer horror stories when they find out we have cancer. I am telling you this because I want you to know it is 100% normal for him to do this. It is rare for them to listen to you, your husband, his wife, his siblings, his other children, his dr, etc. All you can do is gently remind him. I sincerely hope you're dad turns out to be one of the rare ones who decides t listen.

DodgersGirl

Kathindc, CindyNY, Lula73– thank you for sharing your experiences and the kind words. It always helps to know you aren't the only one going thru something.

Most of dad's falls occur in their backyard where he loves to tinker. I am thinking a walking trail with hand rails would be a great addition, allowing him to remain outside yet have something for balance. He loves the birds, squirrels, and butterflies.

Thanks again!

SheliaMarie

I'm really depressed today. My arm started swelling and turning purple on Saturday. MO has ordered a CT of it for Monday to rule out a DVT. If it's not a DVT, I'll have to see a Lymphedema specialist. The CT should also be able to tell if the chemo is working. God willing, it is. I don't want to move on to a harsher one. This one has already taken its toll on me.

I got approved for my disability; in total it will be exactly $3 LESS than what I have to pay for health insurance every month. Yay me, right?

And then the bills. Unfortunately I had to do that again today. How did I get in such a mess? I couldn't have gotten sick at a worse time. All I wanted was to be able to pay for my children to get an education. Couldn't the cancer have waited until that was paid to rear it's ugly head? That's not even to mention the crap I insisted we NEEDED, back when I was healthy and working. Like the pool that nobody uses or the car that would save money on my commute. Ha. Life sure does like putting us in our place.

Anyway, I’m just really down today. I know it’ll be better tomorrow

Meow13

SheliaMaria, tomorrow probably can't come soon enough. We have been paying $600 a month for my husband's medicare and supplement and we still have medicals bills on top of that. His SS covers most of the cost good thing we are not dependent on SS to live on like many people are. I wish the beautiful wonderful medical care would come, remember being promised that!

mustlovepoodles

I don't know if this is the right place or not: it's my DH. He is about to drive me right over the edge. Can I talk about it hete?

smwusaf

mustlovepoodles - this is probably a good place to vent.

I will say that your name under your pic makes me laugh, it comes up mustlovepoo....

SheliaMarie

Of course you can