STEAM ROOM FOR ANGER
Comments
-
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.
0 -
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
0 -
Good point, Wicked. I know people mean well and are trying to be encouraging, but it can be frustrating.
0 -
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!
0 -
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
0 -
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.
0 -
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
0 -
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!
0 -
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".
0 -
DH was tired from sitting at the hospital with me for another mammo, US and physiotherapy.....sometimes "support" just sucks...
0 -
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.
0 -
Blinkie, I'm stealing that!
0 -
You're welcome, Kattysmith, any time. What a nightmare dinner party for you. Yep, good ol' hindsight, but X probably did need to talk and you were there for her. Love your sense of humor.
Lita
0 -
Oh, Katty, I forgot to add a comment about our "forced" retirement. Because of my extensive mets and the chemo SEs, I had no choice but to "retire," and it indeed sucks. Like, I'm supposed to ENJOY this?!?!
Persistent fatigue, unpredictable diarrhea, relentless aches and pains, hand/foot syndrome, and accompanying nausea make for the most delightful days. I can barely stand up to fold a load of clothes or do a batch of dishes with all the pain in my back from spine mets and FIVE compression fractures (thank you, Mr. Cancer). I'm supposed to walk more, but the chemo makes my red cells drop and I get light headed and short of breath.
"Well, at least you don't have to go to work anymore on top of this...." Small consolation, let me tell you. I'd always imagined a retirement of doing fun crafts and volunteering. HAH!! The hand/foot syndrome has left me with NO feeling in my fingertips, numbness, tingling, neuropathy in my hands and shooting pains. I can barely put on a pair of earrings, let alone handle a needle and thread!! AND the chemo affects my eyesight. I can only read about 20 mins before everything gets all blurry. I use Rx eye drops from my opthamologist, but they don't last that long, and he says that's all he can prescribe for me. It's just another SE to contend with.
What kind of life is this? It's really making me sick (pun intended).
That's my rant for the day.
Lita
0 -
Exactly, Lita, sing it! The cruel irony (oh, boo hoo, I know) in my case is that so far I've been basically and fortunately asymptomatic - except for some fatigue - so if we had money, hubby and I could do some fun things while I still can, rather than sit at home pinching pennies til they squeal!
I hate to hear that you are having so, so many serious problems. It does suck and it isn't fair. Mr. Cancer is a heartless bastard.
0 -
Thank you for this thread. What a gift. I've tried writing thoughts down and then burning them to release. Not cutting the mustard. I think it makes a difference to know that real people "see" you.
Anyway, here goes.
To my obgyn whom I've seen for 25 years: I felt safe with you - you have an impeccable reputation and are at an extraordinary institution. Why did you tell me in the last few years that I didn't need yearly ultrasounds to complement my mammos anymore? I have dense breasts. That doesn't make any f-ing sense. Why was I so stupid as to listen?? When I called you after my diagnosis to ask you if I was going to die from this cancer you said "we don't have enough information yet". Then you proceeded to tell me that other people have it worse - one of your other patients was diagnosed the same day I was with two different types of cancer in each breast. Then your daughter's fiance was diagnosed with a strange terminal disease at 22. Yes, that truly made me sob. And feel like a self-centered B. I so did not need that. And could you have f-ing called one time to see how I am doing with surgery, chemo, etc. after 25 years of knowing you??!
To my radiologist and ultrasound tech: WT mother F?? How could you not see cancer for what was likely years? For years you two had been watching my images. The day after I was told by you everything was simply fibrocystic changes another radiologist told me that my large and long standing area of fibrocystic changes were in fact solid tumor and spiculated like cancer. How can something go so far wrong? The "new" radiologist simply said this was bad luck and that ultrasound is in fact "operator dependent". Who the holy hell knows this?? Not me. If I knew that I would have been certain to have different radiologists/ different techs over the years rather than trying to keep consistent. Word to the wise.
To my nurse navigator: I am actually dreaming of the s&*t I can stir up for you. You have an "amazing" reputation and have been touted in the news as some sort of oncology angel. But I'm quite sure you're a full-fledged psychopath. You told me we would be connected at the hip and you would help me every step of the way. My case was very convoluted and the lead up to my surgery was fraught with issues. We talked almost daily for six weeks. I saw your true colors several times but I was too scared to trust myself and get away. Finally, though, when I chose to use a surgeon who has an extremely good reputation but happens not to be at your institution - and not the one you personally recommended - you abruptly stopped helping me. When I called you hysterical and desperate for comfort the night before my MX , you told me the MX was a smart plan but that you would never in a million years use the surgeon or the approach I chose. That I was making a big mistake. Then you said you had to hang up. I never heard from you again despite the fact that initially my onc treatment would have continued at your place. I ended up switching healthcare plans so as to never be near you again. And I went into surgery stone cold sober (can't take tranquilizers) doubting myself and sick with regret. I now know I made the right choice. I have since heard from other doctors at other facilities that you have done the same thing to many other patients. That you are power hungry and ego-maniacal. You have made people doubt that you are there to honor their health and well being; you have made people feel you are there to hurt. If I ever get my mojo back I am going to take you down so nobody else suffers and you are exposed for the fraud you are.
To my family: I will never stop loving you but g-d you make me feel alone. For my mother who does so very much for us but wishes I "had more grace" - You make me feel like I can't do cancer correctly. When I say how grief stricken I am over loss of my breast and everything else you say I have had 5 months to get over it. That I should be happy to be alive and joyful like all the other BC survivors she reads about in the Pinktober papers. Just blow. And to my dad who loves me but hasn't called or emailed in over three months because he can't "do chemo". And to the four people in my extended (and close!) family who have had BC but have not reached out, WTF? I keep hearing through the grapevine that they don't want to intrude? I am not sure who is crazier, my relatives or me.
To my husband: You are my everything. I love you deeply and with a force as strong as the sun and as mysterious as the moon. But holy s&*t. You are so not equipped to deal. I long to tell you how afraid I am of each step along the treatment course. Of how far flung from normal our lives seem to have become. Of how I am so lost and small and alone at times. But when I utter the word "afraid" the roof blows off the house - you become so angry. I know it is your own fear that you cannot face but it is driving a wedge between us. Wake up.
To my friends who have left. That is fine. I am so tired it is okay.
To my few friends who have stayed. I love you with all of my heart. Thank you for letting me scream and cry and be myself, for not shying away from the real me. You have been so strong and brave and big-hearted to stick this out with me. My gratitude is boundless.
To myself: I hope you can forgive yourself for being hateful at times and not very patient with people who can't seem to give you what you need. You are not the center of the universe, remember? I hope you can come back to center and be the person you used to be. Maybe better. I hope you will be forever mindful that everyone struggles. Perhaps the people you are so angry with are simply struggling as much as you but in a different way. I hope there is never a time in your life when you turn away from others in pain or in need of comfort and refuse to see them as they need to be seen. Remember it blows out their candle.
Thank you for letting me vent. I wish you all love and tranquility. I leave you with this:
The Peace of Wild Things by Wendell Berry
When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water
And I feel above me the day-blind stars waiting for their light . For a time
I rest in the grace of the world, and am free.
0 -
Willa,
I am so sorry to hear you have been so comprehensively let down by so many people. Your post and the poem are very moving.
A hug for you ((Willa))
0 -
Willa- we get it.
Rant away honey, better out than in.
Hoping things get better in the days ahead for you. I know for me, and some others around here, that time has a way of softening those memories and words people have said or left unsaid. It hurts. Sometimes people suck. One day at a time.
Best wishes. -m
0 -
My cancer journey. When will it be over? When I leave this world. I want off this bus. I can't stand all the testing and worrying that cancer has returned. I have mammo and maybe colonoscopy in december. I am worried about the results, more scares. I really want to stop going to the doctors and live in ignorance.
0 -
Willa- well said! I understand completely the feeling of loneliness even amongst a room full of supporters. I see how eyes avert when someone asks how I am and really doesn't want anything but "grace" or "I'm fine." Let it out here so many understand exactly what you are going through and want to hear the nitty gritty.
Meow- I agree ignorance is bliss...best of luck in December♡
0 -
Holy moly, Willa, thank you for letting it out, and yes, we do get it. No one - no matter how close and empathetic they may be- really gets it, unless they are going through it. And most are too scared or self-absorbed to even contemplate what we are experiencing and what the future and progression of disease *might* hold for us. It makes them *uncomfortable*. As individuals travelling the same rocky unmarked road without a map, we may have completely different reactions to things along the way, but we are on it and in it together.
The reactions of your various heath professionals is just fracking obscene, and your reaction is completely spot on!!! You poor girl.
Thank you for the Wendell Berry poem.
0 -
ok...
Here goes. Not only do I feel this year has been like one sucker punch after another, got a letter letting me know insurance won't be carrying my plan next year. So I need new insurance, but they ask questions and then disappear off my computer. Really !!! No one wants me??? Duh..
So wtf am I supposed to do next year panhandle??? So I must take my tired butt prop in front of computer use dead fingers to search for something. Try to keep my doctors- the sheer joy!!! As of now looks like I'm gonna pay more and get less.
0 -
We feel your pain Willa, and love the poem.
Pammac
0 -
((((Willa))) Rant on lady! I believe in karma and of course I believe everyone does reap what they sow. You are courage under grace. No one has been beaten to a bloody pulp although it sounds like many deserve at least a smack on the noggin. YOU are what matters right now and you have every right to be angry and upset with those around you who feign care or worse, are indifferent. Hugs dear lady. You are on the side of right.
0 -
Willa
My gosh you said that with grace!! If I started ranting about my cancer think it wouldn't be as well said. Same for family- if I get one more "one day at a time" I might truly commit a crime and be an only child 😇. You are not alone!
0 -
Oh my gosh, thank you for all of your responses. A part of me felt so bad to write what I wrote but now I think I finally feel free from it because of your kindness. I don't know you of course but I love you.
Meow - best wishes for you in December. The unending tests are so, so scary.
Pammac - I'm sorry. The insurance issues are terribly difficult on top of everything else. Hugs to you.
I'll be holding you all in my heart and wishing you goodness and light.
0 -
Willa, thank you for sharing your grief. I share in some of the same grief, and you venting allows others like myself to feel comfortable getting out the disappointment and rage. I don't think there's a "right" way to do cancer. I often feels like the source of this huge life change for me, my husband, my kids, and I didn't ask for it. A burden to others. But, I will get over it and move on. what choice do I have
0 -
Willa...your post struck a cord. Thank you for sharing. My husband couldn't figure out the anger thing. I felt I wasn't allowed to be angry...Some said I should have been happy it wasn't worse. Being angry also isn't a very attractive thing for a woman. I've learned to let go of some of the things I can't change but I will never be the person I was before and sometimes I think that is a good thing
0 -
Happy it wasn't worse?! Who are these people?!
Anger is a very normal (and wholly) understandable response to this disease. Attractive thing for a woman? Cancer isn't attractive...sheesh.
We should all be issued with a credit card style pass to keep in our bags so that when muppets make comments like these we get to flick them in the eye and not be done for assault as we were provoked.
Hugs everyone - we are surrounded by muppets! (Well meaning and otherwise)
0 -
akshelley - Thank you. That makes me cry - the thoughts of burden. There is much of that mixed in with the love. Hugs to you, and to your family.
JJ - I agree on the anger front. I love what you said about never being the person you were before and maybe that's a good thing. I can so relate. I almost bought into the idea that if you're a good person you're made up of all the good feelings in the universe, and the bad ones sit in someone else's heart. But that's not true. I think we're meant to deeply feel and process all possible emotions. That's what makes us exquisitely and intricately human, and also beautiful.
Blondedoris - haha on the credit cards! I'm trying to think of a new business that involves "passion" and that might be it.
Take good care everyone.
0
