STEAM ROOM FOR ANGER

Lita57

Thanks for the upbeat post, April.

My MO probably won't put me on AI's unless all markers go way down. She prefers to keep me on Xeloda chemo pills (as long as it keeps working). AI's are horrible! Xeloda's no picnic either, but once the dosages are adjusted, it is tolerable...even the Hand/Foot Syndrome can be managed if one works at it. And we at least get one week off in between weekly cycles, thank God. I hear you have to take the AI's EVERY DAY, so there's no respite from pain.

Well, today's May 1, so it's back to paying bills and filing (which I hate).

Hope everyone is enjoying spring without too much trouble from allergies.

L

blondedoris

I spent the past 3 weekends in the A&E/chemo ward for new acute uncontrollable pain and difficulty breathing. I already have codeine to hand, and use it as necessary, but this wasn't touching it.

First discharge - You're attention seeking. Have some paracetamol.

Second discharge - Your pleurisy and pneumonia was missed. Have some antibiotics.

Third discharge (after being admitted as I lost movement in my left fingers) - You have brain mets.

Am furious that 3 weeks ago I couldn't get past a triage nurse, and it turns out to be a massive progression. There's a treatment plan coming together now, but if I'd been taken seriously 3 weeks ago I'd have more of a jump on this.

Garghhhhhhhhh......bloody cancer

Micmel

blonde~. I am so annoyed right along with you. I pray this course of treatment is your ticket to feeling well again. I understand how you feel I really do. Only someone else who has cancer can truly understand how horrible it is. Drains you of everything you once were. And could ever be. And future? Whats that ? I don't want to plan anything or go anywhere because I look like a freak. I can't wear normal shoes yet because my feet are so F*cked up from that awful chemo, I have to look like I am always ready to go to sleep not go out. I have one boob and clothing is a challenge and nothing hangs correctly on my chest. I have a road map for a stomach and a third eye which I call my port. Yeah that sounds like someone who is ready to go out on the town. Every ten minutes I feel as if I will melt, because of horrible heat flashes and day to day feeling like I have the worst flu of my life hat had settled in my bones and isn't leaving anytime soon, but instead will invite more cancer friends for a party to try to spread. This wasn't my life a year ago. So what the hell happened I'll never know but it's a shit stew. I'm sorry you're also here with me. But I understand your feelings I truly do. Hugs ~ M~

mistyfier

HOW CAN MY SURGICAL ONCOLOGIST BE THE #1 AT MY HOSPITAL? WHO DOESN'T GIVE THEIR PATIENT A BLOOD TRANSFUSION DURING SURGERY. I WAS BLEEDING! I LOST A LOT OF BLOOD FOUR GOODS SAKE! APOLOGIZE? WTF? MY MOTHER WANTS HER DAUGHTER, MY DAUGHTER WANTS HER MOTHER, MY HUSBAND WANTS HIS WIFE! NOT AN APOLOGY. CATASTROPHIC ACUTE KIDNEY FAILURE RESULTED! FUCK YOU DR. DUMBASSFOR NOT BEING AVAILABLE ALL THE TIMES ME AND MY FAMILY TRIED SO HARD TO REACH YOU! "Its the weekend. I dont work til Monday". WOW! I SHIT YOU NOT! THEN AGAIN FROM HOME AFTER MY 10 DAY HOSP STAY FROM THE MISTAKE SHE MADE DURING SURGERY. A 2ND SURGERY WAS REQUIRED ONCE MONDAY CAME AND SHE SAW MY CONDITION. BUT SHE WOULDN'T PERFORM IT! SHE DEMANDED MUY PLASTIC SURGEON CLEAN UP HER MESS. I WAS LITERALLY IN HE'LL BETWEEN SURGERIES. SURROUNDED BY LITTLE BLACK DEMONS WITH RED EYES AND SHARP TEETH. SURROUNDED! I WAS SEDATED AND THAT IS WHERE IT TOOK ME. TO THAT PLACE DEMONS LIVE. PTSD?! I DONT KNOW. QUITE POSSIBLY. I DONT TRUST MY ONC DR NOW. ITS BEEN OVER 2 MNTHS AND IM STILL NOT HEALED. CANT EVEN GET MY EXPANDERS FILLED YET.

mistyfier

bloody doctors! Im sorry to hear of your troubles.

coachvicky

Some days I fill with anger over what has happened.

Today is one of those days.

Coach Vicky

coachvicky

mistyfier

I hope you find a medical team you can trust.

Coach Vicky

blondedoris

I hope you find a better care team really fast, Mystifer - {gentle hugs}

Micmel - I know the feeling when the only tolerable clothes you can wear are a loose dressing gown and slippers! Can they give you anything for the hot flashes? I liked the 'chillow' at night to help me sleep (it's like a pillowcase you can chill so it gives you something lovely and cold to lie on)

Micmel

looks like I am not the only one stuck in the shitty soup. I hate everything and a lot of days everyone. No one really understands the end of hopelessness we feel going through this everyday. Family says they are there for you but then treat you like shit, how can they not understand what stage fuc*ing four is? How terrifiying waking up every day wondering where else it is spreading. Watching people live and do things without you as you battle to sit up because of bone pain somedays. How insensitive people really are and the things they say. Why does everything I feel turn around on me and Seem like even the smallest thing Is compounded just by the mere fact I have cancer. Nothing is the same and I am broken. Very very empty scared and broken. I am just exsisting scared of cancer not living.

Mystify~ I'm so very sorry honey. Truly and whole heartedly sorry. Sending gentle hugs. None of this is fair and you're not alone,those demons are always in the worm hole I end up in on a day to day basis. And sometimes in my night terrors butI'll try to battle them with you. ~M~

artistatheart

blondedoris and mistyfier, that is horrendous! Infuriating BS! What is worse is that there seems to be no recourse when these Dr's screw up BIG TIME! It's only a human life, a wife, mother, sister...who the hell cares? Wow, very scary

Micmel

blond~ thank you for the suggestion. I am going to have to look for that. And no I can't have anything for the hot flashes because I have to take the hormonal therapy, and I have no more ovaries so that slammed me into menopause and that also brings the sweats. I have ER positive cancer so anything to stop the sweats would be hormonaly related and he says a big no!!! So here I suffer with an industrial fan and my collection of small hand towels for excess water collection on my far head and neck. Yuck but got my results backand they are no progression on my scan so I am considered very stable. I'll take it. I just pray it continues for a very long time. Have a great weekend everyone. ~M~

leftduetostupidmods

micmel, when I was going through chemo-induced menopause (had all the hotflashes other women get in 5-6 years of premenopause in three months only) I used to put baby wipes in the freezer then wear them on my head. It really helped. The fact that I was bald from chemo also helped with that lol.

Also, there are some thin strips of fabric made in a tube filled with silicone gel that you can put in the freezer then put them around your neck, and that really helps cooling off.

Artista928

Is gabapentin something you can try for hot flashes? Or tumeric-curcumin with black pepper supps? I've read many people get some hot flash relief from these.

Micmel

sea chain~ ty for the suggestions !!

bcincolorado

micmel, for my flashes when I went into instant menopause (after my mx and going on meds) is ice packs. I keep 2 going in the freezer all the time. I often get up and get one and then I always have one frozen that way, I've found putting it on my head cools me right down. I have had times I have stuck my head in the freezer at the grocery store in an emergency!

Micmel

Colorado~. Thank you for the suggestions. I'll try anything!! I have also stayed close to the refrigerator section in case of self combustion!! Yuck! Have a great day ~M~

Glenfae

Life has knocked me down several times, filling me with pain and sadness I never wanted to experience. I don't understand why life tests us, but I know it takes everything you deal with the physical changes caused by breast cancer treatment. To make matters worse, you feel like you can't complain, because everyone think you should be happy to be alive. And I am…but it's tad annoying when a tiny oak mite or mosquito bite turns your whole arm into a swollen red log. One of the lovely after effects of having lymph nodes removed.

Life after breast cancer is often referred to as, "A new normal." Well, there is nothing "normal" about a double amputation, being poisoned, radiation burns, skin fused to your chest wall, an armpit lump of scar tissue, frozen shoulder, joint pain from hormone therapy and accompanying depression.

I hate the phrase. "A new normal.." But pink is still my favorite color.

Meow13

I get a little annoyed when I hear people all upbeat saying breast cancer is very treatable. We need better treatment period. Sometimes I wonder what is worse the cancer or the treatment.

Micmel

I agree completely. Living fighting cancer is like a punishment in my mind. I always say cancer robs you of your insides, and the cancer treatment robs us of our outsides. It's disgusting if you think about all we go through to even attempt to get better. It's torture and it's cruel. I agree with you. It Is annoying, but I rather hear we can treat you, then there is nothing we can do. Sending blessigs to all my BC sisters. You're not alone. ~M~

runor

I hate how I hate myself over how hateful I feel sometimes.

In a former life I would blow off or excuse people's bad behaviour. I'd find a reason for their short comings and make excuses for their failures. Now... I want to throat punch people who get it wrong. My sense of live- and -let- live has vanished and I DO NOT LIKE this angry monster that I feel I have become (and I'm not even on any hormone altering treatments yet, god help us when I am!)

I have a friend who had some rather serious medical problems prior to my start down this cancer crash course. I kept in touch and tried in every way I could to be supportive. I listened to her when she needed to talk and tried to not say those little bumper sticker things that people say when they don't know what else to say. Instead I tried honesty, "I don't know what to say, I can't imagine how you get through this, I am so sorry." I reached out over and over.

Has she reached out to me? Has she returned the favour? I know she can't help me, can't cure me. But I thought we were friends in some capacity and boo, jokes on me, because we are friends when SHE needs support but not friends when I need it. My disappointment has morphed into disgust and betrayal. I hate that this is me.

Today DH said something stupid and I cried. I asked if he wanted to do something special for our upcoming 30th anniversary. He blinked at me like a deer in the headlights because for 30 years not much special has been done for any reason.( There have been marital issues for a long time and this filthy cancer has really highlighted problems that were becoming intolerable to me.) He never wants to take time off work for ANY REASON and part of that is because he cannot cope with change of any sort. Not at all. If he expects to work 5 days of the week and I need a day of that week, wow, this causes him big distress. This is a major gear shift and he gets all messed up. So the idea that he might take time off to celebrate 30 years of actually remaining married ... he had to get all wigged out and then he said (I kid you not!) " I would take time off if we were going to do something special, but if all we're going to do is dig up the septic tank, then I don't think I need to miss work to do that."

Uhhh...? What? Dig up the septic tank? When thinking about 30 years of marriage the first words out of his mouth concern a giant concrete box full of shit? And because I had no words for that, none at all, I cried. I have not cried too much in all this, have cried less than I thought. (been too stunned and mortified to cry and I have the worst yet to get through!) but today I cried. And I wanted to throat punch him. I cried because I want him with me to the se appointments and crap, I want him listening to the bad news because my ears shut down and head rings and I don't remember what is said. And we have had fights already because he says he wants to be there 'for the important stuff' but doesn't want to be bothered with the less important, as if I have any way of knowing what kind of news is about to be delivered when I walk into an appointment!!!

I hate that I can no longer blow stuff off. That it all goes right to my heart and HURTS. I hate how some people say stupid stuff so THEY feel better and to hell with me and how I feel. If this is my new normal, I can't say I feel great about it. And I'm mad that I can't even feel free to be angry without judging myself about that too! Blah!

goodprognosis

Runor. We hear you. Vent away. That's what this place is for.

Don't be so hard on yourself. You're entitled to get p...ed off with people. I get what you say about your friend not being there for you. Sadly a lot of people are too busy being selfish to reach out - it's just a fact, I'm sorry to say.

Your poor husband sounds like he's off on another planet. I'm sure he doesn't mean to be dismissive, it just sounds that way when we are feeling that the whole world has f.....ed us over. And I know that feeling.

Being angry is healthy, you know. It's bottling it up that can hurt.

Wishing you all the best and sending a cyber hug your way.......

artistatheart

Runor, I agree, blast away. A lot of anger and resentment rear their ugly heads with this disease. I think we all have had friends and/or family who drop off like flies. People who blab out stupid insensitive comments. I have a friend who ignores me most of the time so I write her off as just another cancer casualty. then she's back! With all these nicey nice Emails, "let's do dinner" "I miss you" blah blah blah. Then she never follows through and is gone like a puff of smoke. She is just going through the insincere motions and I resent it a lot. She hasn't called me in six months then suddenly I am invited to her grand babies baby shower???? wow.

Even my family doesn't get what I'm going through. Almost two years since Dx and I've barely heard from them and only brief superficial texts. I recently moved to a different state, celebrated my 30th anniversary (TOO! Congrats!) and my daughter got engaged. I heard basically nothing from any of them until I commented to one sibling that nobody ever calls me. I suddenly got one brief text from another sibling then the crickets started up again. If one of them were going through this I would be calling all the time.

Not to make excuses for him but men are basically socially stupid even with their wives. They just don't get women really and especially ones who are dealing with the monsters on our mind and the aching ill bodies. They just want to go on everyday as usual, eat their dinner and hope the wife is happy. The comment about the cement box full of crap cracked me up but I would of cried too. I cry when I am frustrated or angry. Then I feel guilty too for "being a baby" when really we are dealing with a very high level of trauma and stress.

On the other hand my DH is bending over backwards to "make me happy". I mean bless his heart for trying and caring so much. But some days he makes me feel like I am a goner tomorrow so he'd better do his duty today. I swear he will barely let me lift a paper bag which is annoying as hell because I am still feeling pretty OK and he makes me feel incompetent. He pushes me out of the kitchen when I try to do dishes, tells me he will get all the groceries from the car. makes me feel guilty and I think to myself that he had better save all that for when I am really sick as he will burn out.....

I am trying to get back my cheerful tolerant self but some days I want to throat punch some people too. Thanks for listening!

Micmel

runor~I think what you're feeling is quite normal. You have every right to be angry, cancer is maddening and no one really understands what is going on with us, and sometimes we don't either. I also have gotten the short fuse issue. I have tried to calm myself before I speak now, because I realized my family was scared too. Especially since I was thee relationship manager of the household. And then I was sick sick sick in bed sick. So everyone looked at me with those. Deer in the headlights aspect ! Take a deep breath and give yourself a break. Cancer sucks ass, I have also had friends drop like flies when the cancer word appeared. Some people just can't handle it. I call them whimps. I hope you can snap hubby into reality soon, I hate it that most people are late to the support party, when what we need is just unconditional love and an ear to listen when we need to vent. Because this is scary shit here people I don't have time to worry about small things that at the end of the day don't mean shit next to what we are up against. Big hugs for you my friend. Come here and rant all you would like. ~M~

runor

THank you all.

My Hub isn't a bad person, sometimes just dumb beyond words. We had a few battles in the beginning when I think he wanted to not acknowledge that this shit had fallen on us. Like if he just kept on as if nothing had changed then nothing would change. I have also suspected for at least 29 years now that he is slightly on the autism spectrum, has a very hard time shifting gears or making changes of any sort, very hard time imagining that people feel differently about things than he does... there are difficulties associated with such people even as they are not cruel, malicious or intentionally stunned. But still, some days I have no defense against it. Like with the septic tank analogy. (wow, epic!)

The other person I have been short tempered with is my mother, which makes me feel REALLY HORRIBLE because I am a mother myself and cannot imagine having to watch my own daughter go through this. It would he horrifying on a whole new level. But my mom is one of those brush- it -off people. If I say I am feeling low I will be given a stern and abrupt lecture on how fortunate I am, how much I have to be grateful for and how I have to be positive. And I snap at her and say, no, no I do NOT have to positive. This sucks balls and I do not have to find the golden lining in any of it. I was bruised to my public bone and could hardly move for weeks due to pain, my boob looks like those gibbled clay pots I used to try and make in grade 10 pottery class, I have to have poison injected in my veins, then get chest nukes, take pills that are going to shrivel my vagina, where the FLUCK do I have energy or time to be positive in this? My poor mom. I am such a cow these days.

Micmel

Runor~ no honey you're grieving who you used to be. As I am as well. I have one boob and something that looks like a bad sewn up eye that is now never to open again. You have every right to be afraid, angry, scared, confused any thing you want to feel is ok! My mother is the same way. She cries about it , then when I bring it up she says you're going to be fine and that's it. Next..... so I just suck it up and move on like I do with pretty much every relationship I have except for DH. He's been my rock. My shelter. Cancer is just pure evil. The thought about having sex scares me. Because I look like a freak show. Why in earth would I want to be sensual when I sweat like a hog half the day. He doesn't miss a beat and I love him with all of my heart. But I don't like what I look like now. So it's my issue. Not his. He is the same., jokes the same , hasn't change one bit. But I have. I am not the same person anymore so I am desperately searching ways to feel beautiful again. I don't know how. I was happy with who I was so much. Why was it taken from us ? I still don't accept what has happened and I think that is what is holding me back. I am feeling much better since this medicine. And I am considered very stable. But I still live everyday in fear with that heavy feeling in my heart of worry of the unknown. I am thankful for you all who understand. God bless you all and may you find the strength you need to get through each day like I do. Hugs ~M~

MeToo14

Runor I feel you. I have gone through the same. I had one good friend disappear only to turn up when I was done with active treatment to try and take credit with helping me. She can go to hell. My husband is wonderful and I am so thankful for him. But his family, they are total Hippocrates. They all say how family is the most important thing but they were nowhere to be found when I was sick. Well, except for my one brother and sister in law. So you are in good company. We understand and are here for you.

Lita57

I concur with all that has been said.

So many people just run away because the ominous word "CANCER" reminds them of their OWN mortality and they just don't want to deal with it.

My SIL has never ONCE called me, visited, or dropped off a meal. Friends come and go. My parents are both gone, and my four brothers are men, socially inept, and are dealing with their own health issues. Only my oldest brother kinda gets it because he has COPD and CHF, so he only has months to live, too.

It sucks. Thank God I have a decent husband, but everybody else can just go to hell.

In the end, it's just you, cancer and impending death looming over your head.

We cope and cry as best we can.

LimnoGal

runor-first, congratulations on making it to 30 years! Good, bad or indifferent, that is quite a feat and it deserves to celebrated. By digging up a concrete box of shit....well...definitely not! If we were really honest, any long term relationship probably has a box of shit stashed somewhere that needs to be dug up and disposed of, but certainly not as part of the anniversary!!

bareclaws

My husband dropped dead in August. Yesterday would have been our 45th anniversary. Dealing with cancer would have been much, much harder, maybe impossible,if he were still here. Just sayin...

Lita57

Limnogal, your Box of Shit comment stored somewhere cracked me up.

Indeed, we all have multiple boxes of shit buried throughout our lives.

My rant is that family is going to Beach Blanket Babylon in SF, but I can't go cuz I'm just too wiped out from Rads, chemo, progression on scans, etc this week. I've always wanted to go, but I know what my body can handle and can't handle, being stage 4.

I can only do so many things in a week...and I'm going to a luau on Sunday, so I have to conserve my energy.

DAMN CANCER!!!

We all mourn what we used to be able to do without even giving it much thought and who we used to be. I feel like an invalid.

Next up, shopping for a Nova walker with a seat so I can sit when my back and hip are killing me.

Limping my way to the grave one step at a time because the pain and numbness is really coming back. Shit...double shit...because I only got a few weeks of relief from the recent rads, but the se's from Rads are still going strong.

DAMN CANCER!!!