STEAM ROOM FOR ANGER
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7of9...hats off to you. I read your post and felt for you. Your plate is so full!!!
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@ her
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Rant 1: to h$ll with all the people who thought I had to stay positive throughout chemo, surgery and now. I don't. If I get worried about recurrence, I'm Allowed that. You step in my shoes and she how positive you stay
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rant 2: F U roommate at hospital who verbally accosted me last Sunday after my DIEP flap. Screw you! You were twice as big as me but I was going to let you harass me about talking to my family on the phone because I interrupted your attempt to sleep after you had six effing people in your half of the room! I didn't say anything even though it was unsettling for me! I truly do wish bad luck on you lady. Go screw yourself!!
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I came out of a really messed up childhood relatively sane. I dealt with the reality of having mentally ill family members who are just sane enough to be allowed to function in society but sick enough to inflict pain and trauma on everyone around them and I accepted their illnesses as out of their control and forgave.
I suffered through a very hard infertility syndrome where I was basically classified a "spontaneous aborter." I endured 9 pregnancy losses over 4 years and countless grueling tests and treatments to get to carry to term my two beautiful children.
I end up with effing cancer. It took my long beautiful hair, aged me years in appearance and stamina, took my breasts, and damaged my soul. And still I went through it with my head held high. There's a chance node removal can cause cording. I got cording. There's a chance radiation can interfere with tissue expanders. It did. Tamoxifen can cause joint pain. I hurt every day.
So when's my break? When can I feel at least somewhat optimistic and happy again? Every day is a struggle to get out of bed and play with my kids and put on a happy face all the while I want to pull the covers back over my face and hide from life. But that's what my mom did. And my biggest fear now is that my kids will think of me how I thought of my mom when she suffered through her mental illness. That she was weak, didn't love us enough, and has a cold heart.
So I do it. I endure the long days of all consuming fear and anxiety and anger. I shove it all back down to the pit of my stomach. So in this thread on this day I dump it all here. With the hopes that finally saying all this out loud I can let some of it go. And maybe breathe again.
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flipflop. All I can do is send out a cyber hug. If anyone needs a hug today, it is you. I admire your courage. We broken children have to work harder for sure, and you are doing it every day. Breathing, living and loving.
Love and hugs, MsP
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flipflop-
I hear you sister....I can identify with you on much of your post. ((Hugs))
Venting can help alot and Lord knows I've done my share on this board. Come back and vent away!
PM if you ever want/need to talk.
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The Phoenix again
On the ashes of this nest
Love wove with deathly fire
The phoenix takes its rest
Forgetting all desire.After the flame, a pause,
After the pain, rebirth.
Obeying nature's laws
The phoenix goes to earth.You cannot call it old
You cannot call it young.No phoenix can be told,
This is the end of the song.It struggles now alone
Against death and self-doubt,
But underneath the bone
The wings are pushing out.And one cold starry night
Whatever your belief
The phoenix will take flight
Over the seas of griefTo sing her thrilling song
To stars and waves and sky
For neither old nor young
The phoenix does not die.May Sarton
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Flipflop, your post brings tears of admiration to my eyes. You have a beautiful soul and are doing your very best.
Brenda E
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thanks guys
I think venting that did help! I had a good day where my mind didn't really focus on all the what ifs but instead came up with a new game plan with the surgeon to fix my failed reconstruction, learned that my herceptin ends sooner than I thought, and completely blew off housework and just sat on the floor playing My Little Ponies with my baby girl.
So thanks for letting me vent and for your kind words
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Ok so on the 3rd of February I went to the ER for kidney pain, following the herniated muscle repair I had on January 6. I told those people my kidney hurt, I told them that was the area in which I had the surgery, I told them my left kidney had been "manipulated" during the surgery. I was in the ER for 6 hours time in which they did a... chest XRay; a.... chest CT scan; a.... lung function to detect any PE?!? and a whole bunch of blood tests. At the end of the 6 hours I was told by a bright eyed and bushy tailed resident "good news you don't have a pulmonary embolism!". I looked at him like he had just sprouted three cabbage heads from his neck and told him "interesting. I thought I was here because my left kidney hurt, at least that is what I remember telling the doctor who saw me and everybody else and their mother". The resident got red in the face, stammered then left, and a nurse (well a murse) brought my discharge papers. I went today to get my medical records from that ER visit - because of course even if my dr had asked for them repeatedly they never faxed them - and guess what? My D-Dimer (indicator of possible PE) value was... normal. What was NOT normal was a low CO2 value and a high serum Magnesium value - both indicators of some kidney malfunction.
Of course once I got home that day I went online and filed a complaint - for all that good it might do. But I can tell you that today, I got in the car in the hospital parking lot, read the freaking records, then stripped the tires leaving the parking lot screaming (yes, screaming because I was so furious that I screamed) - I saw a few people looking after me but I didn't care.
I see my pain mgmt dr tomorrow. Knowing him, I foresee the whomever is the supervisor of their ER getting a very angry phone call soon.
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Flipflop, You are amazing. I feel your anger and frustration. I am so glad that love for your children trumps the desire to throw in the towel. I am glad that you feel you can share your inner thoughts her. Cancer sucks and so does mental illness. I have several family members with Bi-polar disorder and schizophrenia. You are a true survivor. There is nothing harder than losing a child born or unborn. Hugs to you.
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(((flipflop))) Because I get it....
seachain, Don't let it go. Complain until they hear you! I swear, the ER is one of the most dangerous places a sick person can go. I hope that another doctor checked your kidneys after seeing that elevated magnesium level! That could be very dangerous. Hugs and see below for another ER disaster waiting to happen.
A local ER released my husband with a red blood count of 6.9 and a hematocrit of 13! His doctor had called ahead and told them to expect him and to prepare of possible transfusion. It was the closest hospital and it was 10PM at night so we went there and his doctor thought it best as hubby was so sick and a long ride would not be good for him!
Hubby's doctor has privileges in a different hospital so they basically said "Unless you want us to run all the same tests you just had with your own doctor, we suggest you go to the other hospital ER (which is an hour away) or wait until the morning and call your doctor for instructions! His doctor already gave instructions. He told them to treat him and then in the morning an ambulance would transfer him to Yale where he has privileges!
My husband could have died for pete's sake. His heart could have stopped with those readings I was told. It is all about the money and they don't listen anymore. I begged my insurance company NOT to pay the bill for that hospital (they still ran a bunch of unnecessary tests even after they told him he was being released!!) but alas, they told me they had no choice since services were rendered. The person who told us he is better off leaving was a "Hospitalist" which is a designation that many hospitals are using now to make sure people are insured and treated only to the level they could afford is my guess.
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I wish...that my boss would stop texting me "to see how I am"...and I wish or could believe that his concern is 100% for me instead of the company. I also wish that I didn't feel like a criminal for disappearing for a few days (with my Dr's blessing) with my DH. Do I need to tell them everything single I do???? I wish that I wasn't facing a hysterectomy and that I could know with conviction on what to do with my ovaries
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Two months before my initial diagnosis, I was laid off. My job was super stressful anyhow but I was making great money and it completely up ended our budget. Since then my husband has had a few nice raises (that almost keep up with the cost of living) and I found work part time that has kid friendly hours to boot. I started dealing with a recurrence two f###ing days before Christmas. This week I found out the owners are having the company evaluated to sell it. I have been in the workforce over 20 years.... And both times I had cancer I have to deal with a job change. What a bunch of BULLSHIT. And my crappy paying little part time job has awesome benefits. Thanks for the additional stress A$$holes.
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worked for over 30 years same place, as a software engineer. Got a layoff notice almost 1 year to date of tx. After taking AIs health has gone down hill. Social security benefits for disability denied and now in testimony phase. I am feeling too weak to argue with them. Really I worked hard all my life now being challenged on my ability to work. Screw them, too tired to fight. They have no idea of the cognitive abilities and strengh to do my job. ASSHOLES.
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JJOntario, my boss called me to ask how I was doing and to inform me that he would be away for vacation. Good that the kids didn't answer the phone, I was already on vacation. Without the blessing of my Dr, but it was great nonetheless.
Every time I start something new at work, I get cancer. I really think I've to stop working there and find something else, if I survive.
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Meow13 - isn't that just the problem today....people getting federal help who don't work and people like you who have poured money into taxes for 3 decades gets denied. What a crock. Sorry you are having to fight what should be yours.
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MoreShoes...LOL!! You made me laugh! I felt like a criminal...even though I actually did relax a bit. I really hate the constant contact with work. I have a total hysterectomy booked in a month ...I'm not rushing back to work for the sake of a few weeks only to be off again for 2 months. This past year has literally wiped me out and if I don't relax this next surgery is going to kick my butt. I feel like I am no mans land...not part of the working..but not part of the being home crowd either..
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Although this is not as bad as many of the issues you ladies are dealing with, I just had to share this, since I was furious when I read it. Had my first mammograms today since diagnosis last year. Here are the findings:
"Probably benign finding. Your exam shows an area that needs to be assessed again in 6 months. If you would, please call to schedule your follow up appointment in 5 months."
ARE YOU KIDDING ME?!?!?!?!?!?! Turns out, according to the tech, everything is normal, but they are looking for new baselines for the lumpectomy breast. Great. Could it be worded better?!?!?! Not to mention that my RO does NOT require every 6 month mammograms. Wonderful. More phone calls to doctors just so they can all be on the same sheet of music. ARGH!!!!!!!!!!!!!
All my best to you all!
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Don't get me wrong, I am very grateful that they got the cancer and that the chemo worked on my lymph nodes so they did not have to come out. But truly, I HATE CANCER. It took so much from me. It took almost a year of my life by time I am done...It took my beautiful long strawberry blonde hair and gave me this awful gray/white crewcut. It left me with a reflection in the mirror that I don't even recognize. My energy level is coming back but I can't shake the feeling that I only have a limited amount of time and I hate that too. I also hate the way everyone continually asks me how I am. I know that they care, but I just want to get past it and I don't want to be reminded every day that I have to deal with this dreaded disease.
Thanks for listening.
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I hate cancer. I had a friend, a good friend from college named Carrie. Over the years we came in and out of each others lives. We reconnected a few years ago and were enjoying talking to each other on the phone (didn't live near each other). Then, she got breast cancer. It was either Stage IIIa or IIIb. She was Her2+ and had to have chemo before surgery, then surgery and radiation. She was alone. Just her and her dog and she had cerebral palsy and walked with canes. She had a tough life. She wasn't close to her family and didn't have their support. She didn't have a job. She had so many trials. We talked quite often and I was a good friend and a support to her. Then I was diagnosed...I think she was almost done with chemo then, but didn't have surgery scheduled yet. I was initially Stage 0. After surgery, I was Stage 1a. Conversations became difficult. I could hear that it was hard for her, being Stage III while I was "only" Stage 1a. It got to a point where I couldn't do it anymore...I felt what I was going through was seen as not a big deal and that in turn would make me feel twinges of guilt. I stepped back from the relationship. The last time I had contact with her was 7/28/14...12 days after my surgery. I thought about her. I thought about sending her a card every now and then or about sending her a message, but I didn't. I didn't know where it would lead. It seemed we were better off not communicating so, I didn't get in touch. I didn't want her to make comparisons and I didn't want either of us to feel bad. I just hoped she was doing well...hoped she was NED...hoped she had a lot of years left. I found out today that she died this week on 3/8/16...6 days before her 50th birthday. She was in my wedding, she was my friend. Cancer robbed me of her twice, first in life and secondly by death. If I had never gotten cancer, I would have continued talking with her and supporting her until the end. If she had not had cancer, she would have been able to support me when I needed it. I know I did the right thing when I stepped back - it was the right thing for both of us - but should I have reached out after a certain period of time? I don't know. Could we have somehow communicated again in a way that didn't leave either of us feeling bad? I'll never know because it's too late. I only hope that she knows I loved her. I hope she didn't resent me. I hope she understood. Maybe she did, maybe she didn't. It sucks. She had such a hard life. She didn't get the chance to be free. I hope now she is finally free. Stupid, stupid cancer. I hate it.
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mel, I am sad that cancer tore you apart. I never thought too much about my 2 friends with stage 3 bc. They both have been NED and being stage 1 doesn't seem to affect our relationship. They know as I do at any time any of us can be stage 4. Keep waiting for a cure.
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Mel sorry, bless you and her.
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Mel, so sorry to hear about your friend. You were there for her while she let you. You shouldn't feel guilty.
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Thanks ladies. It helps to get the feelings out.
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Well here's one for you. Last Oct I renewed my BC plan with Covered CA (the exchange). Apparently around that time someone set my income to 0 and effective Jan 1 I unknowingly had BC Medi-Cal. I had no idea. BC has been paying my claims Jan and Feb and I'm almost done with the total of almost $3K before I get things paid in full.
On 2/28 I go to pay my BC premium and find acct is cancelled! WTF?? After much digging someone made an error so I got bounced out of my BC plan onto this Medi-crap plan. Ever since then it's been daily phone calls, being bounced call here call there, so sorry can't do anything. Medi-crap claims they can't cancel my policy effective back to 3/1, even though it's their mistake- they can't override the state's computer. If they could do this, BC could reinstate me eff 3/1 and I'd be able to carry over what payments I've already made for the year. But noooooooooooo. No can do. And bonus! The hospital where I get my chemo, which I'm in the middle of, doesn't take the Medi-crap they gave me! So not only am I out a lot of money because my policy with BC is starting 4/1 as new and they can't do anything but no chemo for me this month nor the CT scan on my chest to check on the lung nodule found a few months ago on CT scan! The idiots at Medi-crap are telling me to use this to get tx. They don't get that my MO can't just write orders for anywhere. She's only affiliated with the hospital here. You can't give orders to a place you don't have privileges!
I am currently 2 weeks late on my final Taxotere dose. 4/1 is Friday so if I'm lucky the following week I'll get in for the final dose. I'll be oh only 5 weeks late total! Add to it before chemo I was delayed medically! Drains that were supposed to be in for a couple weeks were in for 5,then infected for a total of 5 weeks, then needing iron infusions for a week---so much delay before hand too! I don't know how this will effect the effectiveness of tx when you are so off. I know folks lose a week or two here and there on schedule due to SE but this many weeks, and ending with an insurance fuck up to boot that's not my fault!!
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Artista, your State RepCongressperson has staff to take on stupid stuff like this. Have you called their office and requested their help?
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No. I think time's run out on getting my BC reinstated because Medi-Cal has to let go of me before 3/15 for them to be able to pick me back up. Thanks for the heads up. I had no clue about this. I'll contact the 2 reps offices that came up on Mon and see if I can talk to someone who can help.
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Here's the email I sent to my senator:
Hi,
I'm a stage III cancer patient in middle of chemo.Had BC through the exchange until 3/1 when was wrongfully dropped.My income was accidentally set to 0 and was booted to Medi-Cal.Only way I found out was I went to pay premium for March on 2/28 and saw my Blue Cross (BC) acct cancelled.Had my case escalated at Medi-Cal and Covered CA to no avail. Medi-Cal claims even though it's their fault I lost coverage and mid chemo treatment to boot, they can't cancel my policy with effective date of 3/1. State computer doesn't let them. Blue Cross has said they can back date me effective 3/1 if Medi-Cal cancels me 3/1. I haven't used Medi-Cal because I'm not even qualified for it. It's taken me two weeks of living on the phone to hear this because so many say sorry can't help you.
Please help a stage III cancer patient who could be stage IV rightfully get the BC coverage I should have effective 3/1 so I may get my chemo this month.
I was supposed to have chemo on 3/1. I was supposed to have a CT scan on my chest for a lung nodule that could put me stage IV on 3/7. All this has been cancelled because the facility where I get treatment doesn't take Medi-Cal. They tell me go where they take it. They don't get it. My oncologist can't write chemo orders or any order somewhere where she isn't affiliated with. She doesn't have privileges anywhere but the facility I go to.
As a result, I am currently 2 weeks behind on my chemo treatment. Being processed as urgent care needed has done me no good with Medi-Cal dropping me effective 3/1. I'm to be back on BC 4/1 but that'll be 5 weeks late on chemo treatment! I've also almost paid 3K in deductible and out of pocket costs on my BC plan for Jan and Feb. If Medi-Cal would drop me effective 3/1 before 3/15 then BC could reinstate me on my old account and the 3K I've paid would carry over. As it is starting BC on 4/1, I start over at 0 paid. I'm on SSDI low income so it's a lot of money for me to lose.
Thanks you much!0
