STEAM ROOM FOR ANGER

tangandchris

Thanks April.....I'm not the only one who has these issues but the hugs are nice. Sometimes it just hits me that actually had BC, like wth this happened to me?? Sounds strange maybe, but it's almost like it happened to someone else. Maybe that is the coping mechanism I use to walk thru it.

((Hugs))

Wicked

Someone told me to "be brave" yesterday. Ticked me off so bad! Why are we never allowed to feel anything but "a good attitude?"

GraceB1

Oh, I could never go through treatment like you did. What! Not ready to just roll over, give up and die yet. Didn't see where I had much choice if I wanted to see my daughter married and two grandsons born.

VLH

I think people don't know what to say, Wicked, and they're trying to offer encouragement. Shoot, I have cancer and I don't know what to say or even want others to say. I agree that "Be brave / strong / positive!" makes me feel like I can't have a bad day or vent because it would tarnish my pink warrior persona.

The worst for me is, "Attitude is everything!" Cemeteries are full of women with positive attitudes and bring cheerful and plucky doesn't offer protection from side effects, surgical complications or metastasis. I try to face challenges with resolve & optimism, but want to be able to indulge in a guilt-free whinefest now and then, darn it!

Lyn

Lookforward

Wicked how true, our cancer centre hands out literature for chemotherapy with a women on front , with a caption on how she always comes to her appointments with a smile on her face. I rolled my eyes when I saw that.

Grace our stats are about the same , my good friend would comment how she would never have chemo when I was having treatments and when I was having radiation she would never do that that either. Like you I wanted to survive, I finally said would that be fair to your family not to do anything.

pajim

Lookforward, the kicker is that yes she would. If faced with this, she would have chemo and radiation too, just as you did. You do what you have to do.

No one likes to imagine themselves on this side of the fence. It's hard to blame them for that.

Lita57

Yep, sometimes I get really fed up, too. When I told a close friend I was looking at urns and making an appt. to go and see wall plots at the same cemetery/mausoleum where my parents are buried, she said, "Why are you doing this now? Are just going to give up?"

I let her have it (cuz if she's a GOOD friend, she should be able to take it). I said, "When people say stuff like that to me, I just want to say EF you! What the hell do you think YOU'D be doing if YOU had St IV cancer with extensive bone mets and organ mets?! Some people may only live less than a year with this and some people may live 5-7 yrs or more. What if I happen to be on the crappy end of that spectrum? I want to plan for it! I don't want to end up like my husband's mom...her ashes are STILL on a dusty book shelve in a cardboard box with brown paper wrapping!!!"

That shut her up.

I'll know in a couple of weeks if Mr. Cancer doesn't like Xeloda and is receding or if he sarcastically snickers at it because he's found a way to outsmart it.

I don't want my husband to stick me on that same dusty shelf in a cardboard box next to my mother-in-law .

I'm ranting along with y'all.

Lita

JJOntario

Just so sick of the fall out of all this. You think once treatment is over your "done", ....but the fatigue, pneumonia, hysterectomy, joint pain, physiotherapy, damaged relationships, fear of reoccurrence...it's all real. We don't make this crap up. Someone told me my shoulder pain was because I don't stand straight...I do stand straight but the boobs aren't balanced anymore so it looks like I'm tilted. 6 month mammo is coming up...how do you explain this stress to others??

Artista928

That's why I didn't tell any fam except my bro who wouldn't say such shit. Him and 2 bffs are all who know, who matter that is. The expectation to be done with it because I am x months out from tx alone would send me over the edge. Don't need emotional/mental stress like that on top, so they remain in the dark. Not seeing them often really helps too.

Twinsmawmaw

Ladies, there is a Web site called www.needymeds.com. go to diagnosis specific, there are some resources there that may help. I will pray for all of you for peace and help as you go through this one hell of a journey.

Love,

Debbie

MoreShoes

Lita, I'm sorry but I couldn't stop laughing at the image of you being next to your mother in law on the self :-)

Hoping that it won't happen in a loooooong time and xeloda works.

Lita57

MoreShoes, It's not so much being on a shelf with my mother-in-law that gets me, it's that she's been gone for FIVE years, and DH hasn't even gone out and gotten a decent urn for her or anything. She's still wrapped in the SAME brown paper wrapping with the label on it for criminy sakes! It's like he's totally forgotten about her. Occasionally, I'll put a little vase of flowers next to her. It's the least I can do.

I realize every culture has different traditions about death and honoring their dead. I don't think it's because DH is cheap, it's just how he chooses to handle it. (DH is Hawaiian/Chinese....his Chinese ancestors are probably appalled, but his Hawaiian relatives probably take a much more lax approach.) My brothers and I had to go to the cemetery at least three times a year to honor the grandparents....we didn't mind going. We just thought that's what EVERYBODY did. And it touches me deeply that my brothers, who live close by, STILL go and place flowers at my parents' and grandparents' graves, and I know they will do the same for me when I go. That's why I'm picking out the niche and urn now. If I leave it to DH, I'll be shelved, and that'll be that!

Lita

Meow13

My neighbors are really getting on my nerves. I recently had terrible back spasms that have me unable to move around very well. My husband told them about it and that I would be unavailable for a few days till the muscle relaxed. They call and ring the doorbell to see me. I really am not up for company I don't know how to get them to leave me alone. It is getting ridiculous.

leftduetostupidmods

Meow13, I got mine "trained". 3 to 5 days a month I do not take any pain killers so I can "reset" my body from getting used to them - this is how I managed to be on the same dosage for over 4 years now.

Anyway, I let everybody know about this, and told them that when I am in pain I am grumpy and to excuse me in advance if I say something hurtful and think that it's the pain talking not me. And that is the reason why I prefer to be alone during these days I do "detox". After I lashed a few times at people who didn't get it, I haven't been bothered in a looong time. I used little greeting cards that I got really cheap at the dollar store. Then I went to all my neighbors and gave them one with a cellophane wrapped cookie on top.

Artista928

I have a neighbour that likes to drop by. She has my number. I told her to call first as I may be asleep. But she'll show up and in the evening when it's dark. I just don't open the door. I've mentioned before a lot of times I have my headphones on listening to music so I don't hear anything.. Tell them they should call first to make sure it's a good time. Some people need to be told the obvious when someone is not always up to par.

Meow13

Really not sure why I have had it with neighbor. She is really nice but I feel like she takes every opportunity to quiz me when I dont feel well.

kittysister

JJ, good description. I don't know why, but for some reason, year 2 was worse for me emotionally than the first one. I never am able to get to sleep before 3 or 4 a.m. and when I do get to sleep, it isn't a good sound sleep. So the fatigue is really bad. Nobody understands. They just say "go to bed earlier", like I haven't already tried that. I just end up getting back up.

Wicked

VLH, I often wonder what those "attitude is everything" people would do if I told them that I was forgoing all treatment and surgery and just going with attitude. It should work, it's everything, right?

Blinkie

This thread has helped me. The other day a receptionist at the clinic said to me, "Well, you have to stay positive!" I replied, "I'm positive I need to be realistic." This worked for me; I felt polite and honest and the receptionist said, in a kind, polite tone of voice, "Oh. Well, that is so true." Without reading various posts on BCO I would not have thought to say that. So thanks to all of you.

Lita57

Kittysister: I hate the "Well, just go to bed earlier..." crap. Why would we do that? Just so we can toss and turn for yet another hour or two?

I couldn't sleep well last night because I have an infusion today. Was just about to drift off, and then I bolted upright at 3 am saying, "Oh, shit! I forgot to get my pre-infusion blood work done!" Soooooo, I had to get up early, take my shower and haul ass over to the lab to get my blood drawn. Total hours of sleep: about 4. (I should rejoice...it's better than the 2 or 3 I usually get some nights

It's gonna be a LONG day. DD is home from college (she doesn't have another class until Tues.), and she's going with me to my infusion so she can take pictures. She wants to use some of the shots for her documentary photography class, and maybe take some to use for my "death reel" slide show at my memorial service.

Happy Halloween,

Lita

VLH

Good point, Wicked. I know people mean well and are trying to be encouraging, but it can be frustrating.

tangandchris

I'm in a lousy ass mood today ya'll

I've been nursing a cold and pushed myself yesterday/last night so I could take DD trick or treating. Then for whatever crazy reason I could NOT sleep last night, probably finally fell asleep around 1a-ish. Back up today for school/work/life and I feel terrible. My body hurts all.the.time and throw in a cold and I'm done. JUST done. I blame BC for this too, my body just doesn't rebound like it used to before treatment. The body aches are ridiculous and the fatigue/insomnia/fatigue cycle is just beating me down.

I'm supposed to go to a pain management doctor tomorrow but I'm nervous as hell about doing this. I'm not sure I really want to go down this road, but I'm tired of pain. Out of all the scans I had because of cancer scares I guess I didn't realize that I actually have severe arthritis in my back and it is causing me some real issues. Well the report says "severe facet atrophy". My previous doctor said I'm very young for this problem...gee ya think??? BC/treatment/hormone therapy...i hate you!

tangandchris

Also I should add, I'm worried about a friend that I haven't seen online here for about a month. I'm fearing the worst and it just makes me so sad and angry.

Thanks for letting me vent

april485

tangandchris, don't be afraid of Pain Management. They know what they are doing and they will try to help you with lots of alternatives to narcotics but if that is the only relief, don't hesitate! Living with chronic pain is very draining and can truly impact your life in a huge and negative way...trust me, I know from what I speak. The doctors in my PM practice have prescribed me a narcotic for the last 7 years (for unrelated pain but the letrozole is making it much worse) and I have had the same dosage for years and that is rare. That is because I use the meds correctly and don't abuse them and so I have not escalated. But, without them, I could not function and work full time or live my life in any meaningful way.

Hugs and hope you find some relief and I hope your friend is ok.

Lita57

Tang, I have degenerative arthritis in my lower back. I'm only 57, but I hobble around humped over like an 88 yo woman. it sucks! I can't get into pain mgmt until after chemo because the drugs jack up my liver enzymes too much and cause delays in chemo cycles.

Hate this effing disease!

Lita

MoreShoes

I can't see my therapist until next week, so I'll scream here. I MISS MY BREASTS. I was doing quite nicely the last two months but the last two days I can't stop crying.I was trying so hard to move on that I didn't spend time grieving for them and my previous life. So f***ing unfair!

Meow13

Oh I ask myself "why" are so many suffering from this most horrible disease. The thought of going thru treatment is enough for me to say forget it. How are we suppose to have a positive attitude when faced with chemo radiation and disfiguring surgery. I want to scream at the top of my lungs " we need better treatment, and a cure".

JJOntario

DH was tired from sitting at the hospital with me for another mammo, US and physiotherapy.....sometimes "support" just sucks...

Kattysmith

Now this is my kinda thread! I don't "do inspirational" very well, me with my gallows humor and independent nature.

I HATE IT when people say, "Oh, you're retired? Isn't it WONDERFUL? Don't you LOVE it" No it effing is NOT wonderful, thank you very much. Yes, I'm 64, but I didn't "retire." I was laid off in October 2015 after 15 years in an oil-related manufacturing job the same week I got my diagnosis of Stage 4 recurrence. My forced "retirement" means impending poverty and dependence on others for us - not some glowing depiction of attractive and hale seniors travelling the world or building that fantastic hide-away on a lake where the kids and grand-kids can make wonderful memories with Meme and Pepe. Not happenin'.

And...

We were recently invited to a holiday dinner for about 12 guests ( the very long Jewish holiday season just came to a close) and the hostess seated us across from a woman who was diagnosed the same time that I was, "so we could talk." Now, I've met this woman (Mrs. X) once before, she's a sweetie and from another city, but we are FB friends and can privately chat anytime online, although we rarely do. The hostess, who has also dealt with BC for many years, KNOWS that I'm a very private person -I don't give my family or friends blow-by-blow updates - and why she thinks I would come to a party so I could discuss my fatal disease in front of strangers (most of the other guests) is beyond me. It's not a %$#@*! support group; it's a dinner party!!! It didn't bother me that Mrs. X talked pretty non-stop about her treatments etc - she clearly needed the connection - but that kept leading to questions about what's going on with me etc. I demurred, answered some, tried changing the subject, but it made me uncomfortable. Ideally, I would've taken Mrs. X aside before we sat down and told her privately that I didn't want to discuss my cancer at the dinner table, but I had no idea that it was going to go on and on and on. Ah, hindsight. I couldn't wait to go home. I know the intention was good and the food was great...maybe it helped Mrs. X.

The above rant ties into my aggravation when people want to bring up my cancer when I'm at the grocery store, at the vet, wherever. Luckily, I have my hair back and don't look ill, so it's not much of a problem anymore, but again, respect my privacy. If I bring it up, that's one thing. If not, then clam the heck up. You all know how hard it is to get our minds off of this disease even for a few minutes. It's like having one of those scrolling neon Times Square news feeds running constantly through my consciousness. Let me buy my cashews in peace, lady.

Thanks, y'all. I needed that.

Wicked

Blinkie, I'm stealing that!