STEAM ROOM FOR ANGER
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In the other hand - there is a very young looking lady in here. Who can barely walk. She looks like she is in pain.
This is a cancer center. So, I imagine she is not doing well.
I want to Cry.
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DancingElizabeth, I know exactly what you mean. I had many similar moments during treatment last year while looking around the waiting room. I was 39 at DX, and through most of my treatment, and I often was the youngest person in the room by at least 20 years. I know cancer sucks at any age, and that life isn't fair, but getting cancer at a young age is a special level of unfair, IMO. I feel like I spent a year of what should have been the best part of my life in treatment, and those treatments have left me unable to have children. Now I get to deal with lymphedema, a numbness in my shoulder and tricep, and the constant worry about it coming back or spreading. I try to stay positive because it makes me feel better, but I have some moments where I just want to scream about the unfairness of it all!
I hope your lab results come back good.
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Swess good for you. You needed to vent and glad you were able to get some help fro your daughter.
Cancer is the stinkiness that just keeps giving no matter how old you are when you get it.
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Dancing - I, too, get angry about being so young. Without any family history or any risk factors, I was originally diagnosed at 31. My recurrence happened at 40. I always looked forward to getting old... watching my children enter and complete each milestone, watching my grandchildren grow up, celebrating being old and wrinkly with my husband.. who (by the way) always said he was going to “accidentally” run my wheelchair into walls when we’re old. We always laughed thinking about that. He would totally do it
On a good note - I spent the entire day with my son. We had a tough conversation, but I finally cried it all out and admitted how I’m feeling. I pray he doesn’t take this onto his own shoulders, but gosh it felt good to get it all out!
My eyes are sore and puffy, but I'm so grateful for the day with my boy. He leaves on Friday for a month in India, so this time was super precious.
My chemo was postponed. My primary insurance approved, but my secondary was hem hawing and insisted on a peer to peer. Unfortunately it’s spring break and my oncologist is out of town. So I guess it will start next week. The crazy thing is my husband pays $900/mo for us to have this secondary insurance. Fun times, I tell ya!
Anyway, thank you to all who replied to me. I’ve held it all in for so long, I needed that. Goodnight all. Sleep well.
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Swess, I am glad you cried. I was going to say to go ahead and cry because sometimes it is the only sane response to an insane world. Hugs to you.
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I really dislike the way my cancer center handles patient communications.
I finished the main treatments in November. Meaning I am now in “monitoring” mode where I see the MO every 3 months. They do blood work and physical during these appointments. The idea is to see how I think I am doing and see how the blood work looks.
I had my 2nd of these 3 month appointments last week. I haven’t heard anything since. Was blood work ok?? Or have they not read it yet? Seems there should be some kind of notification that things are ok after each appointment. Even just a note sent to patient portal would work. But now I am just waiting to see what’s happening.
I have an appointment with clinical trial nurse tomorrow morning at the cancer center so will ask about blood work then.
Just really disappointed with the lack of follow ups unless I initiate the communication
Ok... done whining
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DodgersGirl, that would bother me, too. My cancer center does the blood draw as soon as I get there, and the MO goes over the results with me during our appointment.
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Lovepugs - you stated it perfectly "getting cancer at a young age is a special level of unfair..." It's just cruel and people say "everything happens for a reason" - well - does my potentially dying young - make things better? Tell that to my 11 yr. old DD who might have to lose her mother at a young age. I'm sorry about the lymphedema. BC is the gift that keeps on giving...
Swess - a good cry is the best medicine.
Dodgersgirl - They tried to get me to have my blood work done before my follow-up appointments. But, I come in (a few days before) and do blood work, so the results are ready by the time I have the appointment... It's not the most convenient way to do things. But, with getting tumor markers done - its the only way for me that I think works. (Tumor marker results take a little longer to come in)
Sometimes - my own mother whines and complains about "getting old". I wish I could get old. I don't know - if I will be able to get old. And, I feel like her doing that is like a man complaining he has no shoes - in front of - someone who has no feet!
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DancingElizabeth—. I am going to ask if I can get my blood work done ahead of my appointments. My hubby does that for him s physicals. Great suggestion!
Lovepugs77– my cancer center did that, too, when I was getting chemo but now they take blood and sometime in the next 2 weeks the results are posted to my portal. Of course, I don’t know YET what to look for in regards to tumor marker
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Oh, my MO isn't testing tumor markers. Maybe that's the difference.
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Everybody cheeses about Kaiser Permanente, but I get all my blood work results within a few hours online thru their portal after the draw. Feel sorry for you guys who have to wait DAYS to go over all of it with your MO.
It's essential that I get the lab results in a timely manner so I'll know whether to keep my chemo appt the next day or not. If the liver ALT's are too high, or the platelets too low, or the kidney levels wacky, we have to postpone the infusion for another week.
L
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My cancer center has their own lab and I get results in twenty minutes. One appointment I have labs, results and seen by the doctor. Crazy you guys have to do it in two trips. That just sucks
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I think it depends on the cancer center/hospital you go to. We can get labs online even and read them ourselves and share with other docs we need to. I know we all usually end up where we are referred to start with but I know many who have changed as well. Maybe there is a way to get your labs you have been given privy to?
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Dianarose and Lita57–. I think my blood work is back that same day because my clinical trial nurse had my results the afternoon after it was drawn (for most of the tests anyway. Some take longer). I believe the delay is from the process of the results getting to the MO and then being released to my portal without a plan of making sure the patient sees the results. Feels like once out of active treatments, I am a step down in the importance of MO’s time to read results and share them with me. Sigh.
This will be a topic at my appointment with clinical trial nurse tomorrow morning
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Swess- I saw this today and thought of you. We could all probably benefit from this service too, truth be told...
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Went for last follow up appointment with the radiation oncologist today. Was ushered into the room by some nurse/intern/lunatic who asked me a series of questions that the onc was going to ask me again 5 minutes later. But I dutifully answered and she asked how I was doing and I said pretty good physically (which was not entirely true) but I said my mental state was a problem. She looked at me like I had two heads. Oh? How is your mental state a problem? Well, you know how it is after cancer, it's hard to get on with life and feel normal, it's hard not to think every bone ache and cough isn't the cancer.
She blinked at me a few times, silent, just enough time for me to feel really stupid. She said, have you spoken to anyone about this? And I wanted to scream YES, ABOUT A BILLION WOMEN ON BREAST CANCER DOT ORG WHO SAY THE SAME FLUCKING THING AND WHO FIGHT THE SAME DAILY MENTAL BATTLE AND HOW IS IT THAT YOU, YOU STUNNED COW, DO NOT KNOW THIS IS A COMMON AND HORRIBLE AFFLICTION THAT GHOSTS MANY, MANY CANCER VICTIMS?
Bloody hell! If you work with cancer people in any capacity, when one of them says they are struggling with the mental state of cancer, you should be nodding your head in recognition of this almost global phenomenon and not gaping at me like I hit you with a dead fish and then muttering to see if I have talked to someone, as if I am somehow abnormal! God, it was like taking your dog to the vet and your vet doesn't recognize a dog or what they do! I wanted to ask her, how did you get this job anyway?
Worst is that I left feeling defective and inadequate. What? You haven't gotten past this, let it go, moved on, dealt with it, woke up and realized it's all a bad dream? Even as the powers shuffle their feet over this 'thing' that isn't growing or changing, but frankly shouldn't be there, we're not calling it cancer, we're not doing a biopsy, but we're not NOT calling it cancer either. But in the face of this dithering, why don't you just get on with life like everything is the same. Only NOTHING IS THE SAME! I know damn well I have to get my shit together and I think I am, bit by bit, day by day. But that stupid woman today really pissed me off and made me feel like a loser for not being all Mary Fuckin Poppins. Blah.
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- runor, it's not fair, but looking at your history, she probably treated you like you were from another planet because you're only Stage II and "You should just get over it by now. We cut it out of you and then burned it out. After all, you're not Stage IV, like so many other poor, unfortuate women, with brain mets, organ mets, bone mets and lung mets.Now THEY have something to be emotionally/psychologically upset over! They will never be cured! No amount of rads will ever completely burn it out of them. They will die in 'x' number of months or maybe a year or two or three, depending on how chemo-resistant their tumors are, and how fast they continue to metastasize. But you've got plenty of time left, and we're keeping tabs on it, so stop whining! Or do you want this to become some sort of self-fulfilling prophesy with your constant worrying?"
- That's how some of these people are. Unless they've experienced cancer themselves, they absolutely have no idea. You will always have the Sword of Damocles hanging over your head, even if it NEVER comes back. It hasn't even been a full year since Tx ended for you yet, either. Once you have cancer, no matter the stage, it changes you forever. The painful, mental fallout never ends for some patients, even when they're NED.
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Runor~ waving hello my sweet friend. Did you tell that dumb ass cow that your friend had her boob replaced because of that not to worry about thing called cancer no matter what Effin stage you're at? Did you tell that cow monger analpore that a BCO possey was waiting out back to trip her and push her face into the mud and then say ohhhh did you fall into the mud? Are you ever going to get that out of your favorite blouse ever? Will you ever look at that puddle or mud or CANCER patients ever the same? Stupid ignoramous. Love you friend ~M~
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yup same thing only I was on ph with NP, she said "Oh sounds like you need some counselling" ( I was just having a bad day). Other people are allowed to have a bad day, yet immediately we are seen as needing counselling. Medical community needs counselling on what it is we actually go thru mentally & emotionally.
Lets ALL become butchers & have a big steak tonight.
Hugs Runor ((((((((())))))))))))
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My oncologist has a lab in office. They did the blood test and you got the results to see if you can get your chemo that day. I would hate to have to make all of those special trips.
Runor - I so, so, so agree with you. The mental thing is one of the hardest to go through. Living your life if every twitch, itch, pain is cancer is total HELL! I don't think they understand the fear of having this again. I did all of the fight you told me to do, and now I'm on my own! I told my doctor, during a frantic moment, that I did not want a reoccurrence and I did not want to hear about a five year survival thing - 5 yrs is not enough . I was a survivor in my 90's and died of something different. I said we were a team and I am almost done with my part except exercise and diet it was time for his part.
He put me on a new medicine that was approved last summer. Nerlynx, for HER2+ . I need to be careful with my mouth. This stuff is whipping my butt.
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runor, maybe next time you could bring her some educational material, ask her to read it, and call you if she's got any questions.
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Thank you everyone! I get up every day mad at myself that I have this shadow. I get up trying to rationalize it away. Everything that Lita said, I say to myself every damn day. But that office woman .... wow, just wow. I feel it is her JOB AND RESPONSIBILITY to understand the situation I'm in. And the horrible thing is ... honesty moment ... that before I was diagnosed I was probably just as dismissive and ignorant as she was! It is hard, impossible really, to explain to most people the feeling of having a huge, cosmic hand reach down, grab you by the head and yank you out of the life you used to have and toss you into a life that LOOKS the same but is NOT the same. I remember at first feeling like everyone was an alien, or I was, I could not identify with anyone. I did not feel part of the human race anymore. I felt ... gone. I know. It's weird. I think what was gone was my picture of myself and how I felt in the world. THat perception was and remains, gone. Blown away in an instant in a doctor's office.
So what we end up doing is rebuilding our perception of ourselves and how life is going to look and feel. We mortar it together, one heavy brick at a time. We have never had to do this before, but things are busted up and we have to fix them and it's heavy friggin work and you pinch your finger between bricks or drop them on your toes and then some chippy dipshit comes along to ask if perhaps you are doing this work because you are crazy and need to talk to someone. I am not crazy! She is BLIND to not see the destruction that I am trying to repair!
I was at first diagnosed as stage 1 grade 1 but was upgraded to stage 2 grade 2. This is not the upgrade most people want. ANd now, hoping to hear the all clear, I hear that there is still a thing, not an alarming thing, not a thing anyone wants to biopsy, but a thing that they are watching. Because it kind of shouldn't be there and is not surgical scarring because it showed up BEFORE any surgery was ever done so... do I need to talk to someone? I don't know what the hell I need to do other than smile, nod, say I'm fine and pretend like everything is normal so I don't upset people who really can't handle my truth. I'm disoriented and scared. Who the hell can counsel that out of me?
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I guess this would be the wrong time to post “cancer is a gift”...🤐
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Good evening to all... Now that I m thinking of it the last 3-4 years I ve been hiding a lot of anger daily... Iwas trying not to answer to insults bout my quality of work etc.
Even now that I am in this situation my superior has an attitude like I wanted all these. To get cancer- I want and must take days off but I am afraid there will be an opportunity for them to show me the exit when I come back...on the other hand I m thinking that maybe is for the best to go from that sick en
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Maybe that lady sees people who are doing well. Most of us tend to respond with ok when asked how we are so maybe she was taken aback. I don't bother telling anyone but my docs how I'm really feeling. Now if the doc doesn't get it then time for a change. Just trying to give another perspective. I don't expect anyone who hasn't been through it to understand and not be insensitive except for my actual tx team. Back when I was badly infected and the threat of my implant was real the nice office manager/ma was saying you'll be ok. I don't know that, not even doc does but she's never been in it. So i let it go. I've learned from my family no point in trying to get them to get something (my anxiety at that time) when their solution was always think positive. I'm on meds so it's under control and they think i can now stop the meds since its been years. So i dont bother. How am i doing? Fine. And they don't know of my cancer stuff except my bro who is a true support. Seek support from those who benefit you and ignore everyone else except your docs which you can always change.
I used to be badly bullied as a kid. I was suicidal. Parents didn't get it and said i did something. Bullying was ignored unlike today. With counseling as a young adult i made it a goal to overcome. No one was going to intentionally cause me grief. If they don't get it i either let it go because someone like that means beans to me or i walk. I dont see some members of my own family and it's over 4 years now. They are nice but their flaws in understanding mental issues is too much for me so Im gone.
My point is, and it's for your own mental health, is to let things go. If you can't then change it. It's not easy. But forget others and work on yourself for the sake of yourself.
If you're looking for therapy i recommend cognitive behavioral therapy. The premise is everything starts with a thought. Thought leads to feelings. Feelings lead to behavior. Change the thought and lift your mood. I learned this in a psych ward 7 years ago. I changed what i could, let things go and work on my thoughts. Mine in runors situ is what i wrote, which starts with a maybe.
It sucks what we go through and to put what strangers say in top in any context of importance is a stress we don't need. I don't have time for insensitive people. I have enough aggravation with my list of ses from my stage 3 high risk to progress stuff.
Vent here but i hope you are working on yourself for your sake. Thats not negating feelings but you can make yourself sick like i did from anger.
Wish all the best.
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Rosabella thank you very much for your words. I also had my difficulties as a child since my mother died when I was 2...so I have a constant feeling of loss. And I always trying to protect the "helpless "... and you know its an endless fight..
I ll take your advice for the counseling i feel i need it..
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Runor,
After reading what you wrote, feeling the EXACT same way, feeling just as viciously angry at the unfairness of it all and continually thinking it’ll switch back to the way it ‘was before ‘ I’m left with little or no advice on how to deal. Will we ever come to terms and accept the ‘new normal’. Maybe, if we’re lucky. I can’t tell you what to do, nor how to feel. For me it’s akin to alcohol recovery, they say one day at a time. That’s all I can do at this point in my life. Today you are angry...really angry so roll with it. Fuck the Mary Poppins and yell to the treetops. it IS unfair and it DOES fell like hell worrying over whether a pimple or ingrown hair is cancerous. There are no words for the heinous hell we all suffer! So why try to figure it out when we are in the moment. Roll with it. Tomorrow might be better, might not be but I hope so. Getting angry at it is a way of facing it in my books. I think you’re more angry at ‘it’ than the nurse, she was simply the vehicle that brought you to this today. So rant away, your raw honest anger is understandable and appreciated by all here. Just do me one favour if you can, don’t EVER let this bastard named cancer steal your amazing sense of humour...it’s taken enough of you already. Great big hug!
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my rant totally outside of current talk. But i need to.
Feeling like shit after round 3 AC. No nausea or vomitting but unable to concentrate, stay on same position, sit walk lie down nothing works. I am really fed up. Have an appointmemt Friday with onco to see my numbers if I stoo treatment now and go straight for surgery and obviously no radiatiin. My tumir has shrunk with AC already and surgeon things lumpectomy instead of mastectomy. So what the heck. I'll take the risk and do just surgery.
I hate how i am feeling right now. Sleep deprived lost of appetite inability to concentrate and more. Just ranting and this morning was hitting my had on my sofa like a mad woman in distress. I hate this disease and i hate it happened to me because i am not a fighter.
Voila my rant.
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Lolotte19 - I'm sorry your're feeling so awful. :-(
BUT - that is GREAT that your tumor SHRUNK with A/C!!!! And, lumpectomy instead of mastectomy!!!! :-) I know the chemo feels like hell - but - just imagine it whacking the shit out of your cancer!!!
Runor - Exactly!!!!! I told my DH - to just "imagine" for even one second - how it feels to be at high risk for metastatic cancer - the rest of your life. It literally is a living nightmare. He wouldn't even try to imagine. Oh well.
Everyone Else - thanks for the kind words and replies!!! It really helps to come to a board - where everybody "gets it".
So - I got my results back and MO said they are "great!!". She said she usually has her patients do an annual bone scan. But, based on my labs, she doesn't feel it's worth it - so no bone scan!!! Whew!!!!! And, I've graduated to 6 months (instead of coming every 3 months). I feel lucky - but - still scared - like - how could *I* be so lucky? Is this really true - I don't know why my brain can't accept that I'm Ok. Its just slowly sinking in....
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DancingEliz, I get the feeling of relief and yet being guarded at the same time. We have all learned there are bears in the woods, having all been bitten when we were doing nothing but minding our own business.
Egads, I don't know that I'm angry over the unfairness of it all. Life is not fair and something was going to get me eventually. I just hoped eventually would raise its head 25 years or more from now. So, I have never really felt 'why me'. But I am truly pissed off that you can be working in the medical field, in a designated cancer clinic and be so utterly out of touch with the experiences of your patients. She wasn't just some random nurse. She had a clip board, asked me questions and handled her response with an absolute lack of professionalism. I expect, and bloody well should get BETTER service from the people in the industry. She dropped the ball BADLY.
The end result is what I think more and more of us slowly learn; Keep it to yourself. Having a shitty day? Keep it to yourself. So tired you can't move? Keep it to yourself. Arm swelled and hurting and having pains in your boob and armpit? Keep it to yourself. Feel repulsed when you look at what's left of your boob? Keep it to yourself. Do you look at your husband and have thoughts of him sitting on the sofa watching tv with another woman 10 years from now and you long gone? Keep it to yourself. While no one can take this off my shoulders or fix it for me, having someone look at me like I was a freak was extremely not helpful. I didn't ask the woman to help me, fix me, or counsel me. She asked how I was doing and I told her. She SHOULD have said, "This is a terrible jolt and no one is prepared to deal with it. Healing mentally can take longer than healing physically. You are not alone because this is what I hear from so many cancer patients. We offer some services if you ever need someone to talk to and you can pick up a list of names at the desk if you want. But be assured that you are perfectly normal in feeling all of this and finding it a struggle." THAT would have been helpful.
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