STEAM ROOM FOR ANGER

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

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.

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

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♡

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.

((((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.

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.

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

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.

I am angry that we need to worry about our health insurance on top of cancer. Obamacare for some, Medicare for others.

I've had stares before but ignore them. I take my phone to appts not just because of the long waits and crappy magazines they have but to keep myself occupied on good positive sites.

Iz1999...the woman who kept staring at you may have her own issues to deal with. Some people just don't know what to say to someone who obviously has cancer. They stare at you and think, "Shit!!! I hope that never happens to me!" They're scared about their own future and curious at the same time.

Then again, maybe you were truly rockin' that hat!

She might have been there awaiting her own Dx. You just never know. It's like a six-word Ernest Hemingway story. Remember his famous one: "For sale. Baby shoes. Never worn." DD and I have been having a contest to see if we can do six-word stories as well.

"Waiting room. Positive diagnosis. I'm dying." - - That's my entree for today.

L

So upset and angry. I'll give some background first. I have been dealing with Stage 4 with a brain met since july. Since then I had a craniotomy, and whole brain radiation. The WBR takes months to recover from, to boot, had a taxol infusion last week that made me feel hit by a truck. I am having trouble eating etc too, not because I don't want to but because am ill.

I have a family, brothers and mother who I coown my house with. My brothers and mother feel I should not be flat on my back on the couch with the fatigue from the chemo and if I somehow muster a different attitude, I can at least do a little more.

The anger comes in when I had got up today, I was going to try to do more and then mother gets angry right away. Saying I gave up etc and just being harsh on me. I can't deal with this stress and try to get better at the same time. AAAAAAAARGH

Thanks april, it is nice to hear that. I know they are not coming from a nasty place, but it is so hard to deal with. I am just going to do my own thing and let them think what they want. I know I don't understand their stresses as well as I should while dealing with my own. I know I will pull out of this slump, but as I said to my mother, it takes MONTHS to recover from brain radiation, let alone all the drugs I have had since 2015. I said to her that if I could put her in my body to feel the exhaustion, she would have a little more understanding. For now, I am refusing to talk about it and banned the subject. If she keeps pushing, I will ban her from my onc appointments too.

I am so glad there is this board to sound off on.

That actually is a good idea. I think a social worker should be able to wade through the stress. I could actually request one, my mother could do since services are offered for family and caregivers. That may be a good idea. Just need to be able to breathe.