STEAM ROOM FOR ANGER

Carpediem56

@Lita57

Well said!

Where the hell is the like button!

nanette7fl

why is it that i go in for breadt surgery to come out feeling like a car crash victim?? Good grief I was just starting to feel physically better from the BMX on 4/2 & on 5/1 back in for revision surgery to get the infections cleaned up and TE's removed and I'm almost back to top square 1 on healing the rest of my body. My neck is just beginning to feel like it belongs to me, my arm(s) muscles and tendons aren't as sore but still WHAT IN THE HELL DO THEY DO TO OUR BODIES WHEN WE'RE UNDER??? I feel like they played kickball with my body

bcincolorado

I have aged 30 years physically since my first surgery. Cancer takes a toll on our bodies that is for sure.

Mavericksmom

Nanette, I wonder the same! I always felt I was dropped or something happened during my first surgery that caused me to need total shoulder replacements!

I too hate the fact that both times I had breast cancer I felt great when diagnosed and horrible after treatment!  Still waiting/wondering what the Letrozole will do to me!

DawnS1962

I started reading this thread last night and wow, I can relate to so much. I had my 2nd Taxol infusion yesterday and the steroid in the premeds kept sleeping at bay last night so I just continued reading.

I've been frustrated more than angry since my diagnosis. Frustrated with people I thought would be there who haven't. Frustrated by friends who say this is just a bump in the road. Friends who tell me it can be worse. I know it can but it still sucks. My sister in law who has been incredibly there for me keeps saying just get them both cut off so you don't have to worry. Says that's what she would do. Sorry but till you've been diagnosed with breast cancer which I pray to God you never do, don't tell me to cut them off. They're mine and I've become attached physically and emotionally to them over the past 56 yrs.

My husband has been incredible. We're married 27 yrs and I knew he loved me but never realized how much he needed me till this happened. He's been my rock. Not an emotional man by any means but he's teared up quite a few times in the past few months. He always manages to make me smile. It's a gift he has. My daughters have also been incredible. I'm blessed but still feel frustrated by this horrible disease.

Before I was diagnosed I used to wake up every morning thanking God for another day. Now I wake up wondering how I'm going to feel, hoping I don't get neuropathy and fearful if I get through this I'll have a reoccurrence because I'm triple positive. I want to go back to thanking God for another day.

That's my rant for today. Going to meet a friend whose been great for lunch.

mara51506

Dawn1962, I am verry sorry you find yourself here. It definitely is upsetting when friends and family disappear. I am not sure they realize they don't need to make a grand gesture of help, just showing up for a coffee would mean a lot. I think people are afraid of cancer and the fear can help drive them away which still does not make us feel any better about it.

You find out who true friends and family are by the ones who show up and don't put their own opinions on how you should handle it. You have a very new dx and if takes a LONG time to get anywhere near wrapping your head around it. As time goes on and you finish your treatment, you should still seek counselling through a hospital social worker or support group. Being with people who understand you will help ease some of the stress.

I know I am stage IV, I have been dealing with it for a long time. Once there is some distance from it and the steroids are done and you sleep, it will help emotionally. If you can gently walk, I recommend that as an assist with any stress or depression you are dealing with now and as time goes on. Good luck. FYI I am still here and have no evidence of disease in both my body and brain. I keep up my strength and have found that the treatment I am on still allows me a good quality of life

DawnS1962

mara Thank you. Your words are encouraging. I think I will seek counseling. I realize this could be worse than it is and I hate to feel down. I did walk today. I managed to get 8,000 steps. Nowhere near where I was before chemo but better than I was a couple of weeks ago.

I have to learn how to take this one day at a time and try not to focus on an unknowable future.

Best to you and again, thank you

Nanomom11

Tonight I went to my nephews wedding that I had been looking forward to for quite some time. I got dressed up and put on my itchy, hot wig and headed out with my family. We arrived and I do have to be dropped by the door bc I have trouble walking but once inside I had some confidence and was enjoying the event. Then all the talk turned to me and cancer. I was told multiple times how I didn’t look like a cancer patient by the same two people and was greeted by one telling me she couldn’t eat meat anymore and was sick. I tried to smile thru it all bc I had my 3 kids w me, but I didn’t know what to say to so many questions and comments. It quickly made me uncomfortable and a little sad bc I was really looking forward to this event. Before I arrived I actually didn’t feel like a cancer patient but by the time I got home I cried. How do you handle all the curios and well meaning people when you just don’t want to talk about it? And especially in front of my kids. This was my first big outing and I didn’t know what to say. Any advice from you guys that have been in these situations

DancingElizabeth

Nanomom - UGH. I *HATE* dealing with the questions and the comments. For that reason, I haven't told many people about my BC.

You handled it very well. It's so hard...I know. I was wearing an itchy wig almost 3 years ago. It sucks, but your hair will come back...

Anyway, When I am asked questions that make me feel uncomfortable I just tell them that I have “...a hard time talking about it..." Which is true. Or I might say “well the docs through the kitchen sink at it" (when asked for information about the treatments)

Hang in there!!!

Carpediem56

@Nanomom11 ((((((Nanomom11)))))) So sorry this happened to you! Of course they meant well! This is exactly why I haven't told anyone. (My doctors think I am crazy for not telling anyone. Not even my three children. I have only told one of my 9 siblings. So glad I haven't.)

@DancingElizabeth I don't want to have the conversations with family and friends either, I don't like the attention. Love your answer for them if they ask about it!

Lita57

Sorry, ladies, but the hair doesn't always come back. It's been over a year and a half and I still look like a cross between Elmer Fudd and former CA gov. Jerry Brown. But that's okay.

I'd rather still be alive and mostly bald than dead with a full scalp of hair.

Sorry you had to put up with the comments and nosy questions. I guess we have ro accept that it goes with the territory. I used to get those "you look great" comments too, but now that I have to walk with a Cane/walker all hunched over and have lymphedema, people tend to leave me alone.

L

dtad

Hi everyone...I'm a little angry today so I decided to share. You can see my diagnosis. What you don't see is I have multiple autoimmune disease which is very debilitating. I can totally relate to those that have to deal with sickness on a daily basis and it doesn't go away. I was struck overnight with this. it ended my career at 49 y/o. My children were 19 and 22 at the time so they were mostly independent. Most of my identity came from my work. I had to go to counseling to mourn that loss. Its now been 17 years since my diagnosis. I have lost all my friends except for one that I talk to on the phone occasionally. I save all the energy I have for my children and grandchildren. However the majority of my time is spent in bed. In general I handle it pretty well. Just not today. Yes my BC diagnosis was another hurdle but mostly it's dealing with chronic illness that I find most difficult. So I get it! Here is hoping you all have more good days than bad. Best of luck to all.

Meow13

dtad, I lost almost all contact with my work friends. My company was pushing all senior engineers out offering retirement deals. Wanting to keep the younger cheaper people. I don't feel singled out but ever since I took 2 months off for my DIEP I felt a rift growing. I worked with these people almost 35 years. I thought I had many friends. I keep in contact with only 1 friend from work. I think the rest of them think I am dying and avoid me like the plague.

Yndorian

My mother's neighbor is the sister of a neighbor of mine, so I can see how the notice of my cancer have spreaded. Of course my new gipsy look helped too. Anyway, people ho loved to talk to me everytime I came out, now just says hello and walk faster. People don't know how to act in front of a cancer patient

Lita57

Yeah, I get that. Been ghosted by a lot of "former" friends.

They treat us like we're contagious...like we have the MEASLES or something.

Went to a mini-family reunion with the Hawaiian side of the family (DH's side) yesterday, and it saddens me that my nephews-in-law will only remember me as the "Aunt who had terminal cancer." The other folks engaged me in conversation, but the younger ones couldn't even look me in the eye (.

L

bcincolorado

I hide a lot of what is going on with me from the kids and grandkids know very little at this point because they are so young. My niece lost her mom several years ago and we are her surrogate parents so she freaks out when something happens with either of us and since the cousins all talk even though live in different towns we keep a lot to ourselves medically. I understand more why my in-laws hid stuff from us before they died.

ctmbsikia

I think Alex Trebek described it best on how he was doing to Robin Roberts (remember she is a bc survivor) when he said he was sort of a wuss.  He could deal with the pain he was having but he is having a time with the sudden waves of sadness that come over him. 

I think every single cancer patient has this.  I don't think our family and friends that have never been diagnosed with any kind of cancer would understand.  I don't think our MOs understand, but they should be listening and referring us to counseling on dealing with active treatments, side effects from treatments, and our emotional well being as a whole.  It seems everything is status quo depending on sub type, however all you hear these commercials yacking is how everyone's cancer is different.  It's  no wonder so many are having anger, sadness, depression issues.

I have a hard time now and again but seem to get out of it before reaching out for help.  I've tried putting things that happen on a 1-2-3 basis.  1-Is whatever new symptom due to normal aging? 2-Is this a new side effect happening?  3-Maybe something else is up?  It has sort of helped me to think and focus on #1 and #2 before going to #3.  This is how I got out of my most recent funk.

My son said he had a hair in his sandwich the other day.  I replied with well maybe I'll just stop taking my little white pill so my hair will stop falling out and I can just get cancer again.  That wasn't very nice, but oh well He's 25, he will get over it.  Told my husband I was in a Big B mood can he please not talk or look at me.  He agreed and I retreated to the bedroom. Starting to have heart burn now and even choked up water the other day--not happy but remaining focused on this not having anything to do with #3.

Thanks for listening, if you've made it through this post.  I'm having 4 gals over for dinner tomorrow, and they have been great.  I say I'm doing OK and they understand I don't want to talk about it with them.  If I do they better be ready to stay all night!!!!!  I'd really rather hear about their normal lives, and yes even their problems.  It makes me feel normal as well.

Hope you all have the best day you can today!

DancingElizabeth

Hi Everyone...

It's like when I talk to people - who don't know about my BC. Even if it's to talk about the weather - feels Good.

I just crave that normalcy. Anything that has nothing to do with BC. It's like a mental break. To get outside of my head and feel like I am not so different and a hot mess than others.

The gym helps me a lot. I see people of all ages, sizes, fitness levels and people in wheelchairs... They are all there to get a nice sweat and feel better...

However, despite all of that and my reconstruction, I still hide the front of my chest when I have to take off my sports-bra in the locker room...just afraid of people knowing and feeling sorry for me - because that makes my reality hurt so much more....(I've gotten pretty good at hiding this!)

candy-678

Ctmbsikia-   YES, YES. About Alex Trebek and his interview with Robin Roberts.  I saw that interview and when he said that about the "waves of sadness"  I thought "Oh My Yes".  I agree that unless you have gone through cancer yourself you cannot really 'get it'.  My MO office nurse asks about "depression" with each visit.  She is filling out a form on the computer as she is doing the vital signs, weight, etc.  How do you answer?  I  respond by saying  "Of course I have some depression. Who wouldn't. But it has not affected my activities of daily living yet".  The nurse or onc has never referred me to a social worker or counselor.  And I am not on any antidepressants so I guess the doc thinks I am ok and answered the question fine.  

I like your 1,2,3 basis.  I am going to try that with my new symptoms. 

Today I went grocery shopping.  You see EVERYONE at the store.  Today I saw a woman I have not seen since diagnosis.  She knows of the cancer because we know the same people, I just hadn't seen her in a while.  She says " You look like nothing is wrong".  I am not good at coming up with  good quick responses.  But I said " Well looks can be deceiving".  I know she meant well, and we always liked each other.  But metastatic cancer is what it is.  We are not "fine".       I also noticed she was glancing at my chest.  I had a mastectomy and the prosthesis is not perfect.  It is not quite the same size as the other side.    I am always self conscious in my clothes on if I am crooked or if I look ok.  

I just wish I had never got cancer.     

jaycee49

Oh, can I borrow that, "looks can be deceiving" thing? Good one, Candy.

mara51506

I am always told I look quite healthy. Although I know that people mean well, I am skilled with making wigs look like my own hair, bronzer and coverup. I actually greatly like Uncle Fester. My prosthetic breast (I did not want reconstruction) makes me look normal. For the people that know I have cancer, if they just say I look like nothing wrong is hurtful. I definitely get the waves of sadness at what I have lost. My job, having to go to hospital for treatment until it stops working knowing my life will end. On top of that, my mother who I bought my house with died recently. I had to get rid of a lot of stuff to fit in the new apartment. It also can cause sadness. All I can do is just keep going since I do not want to stay sad. It is definitely normal to mourn the loss of some aspects of the person you were before cancer.

Having said that, I KNOW that I have been lucky to respond for so long on a fairly gentle treatment for me. Even the brain is quiet for now and my body is NED. I definitely feel lucky about those things and know things could be worse. Reminding myself of these things helps me get out of the sadness sooner. I just imagine what my mother would say about carrying on. My older brother and his family also helped me. They did almost all the packing of old place, donating and throwing out things and moving me into my apartment. They also arranged contractors to upgrade some things at my condo and did work themselves on it. It is up for sale now. I will obviously pay them back plus a good some once the house sells for all the work they did on my behalf. I am so glad I have a brother like that. These things often help me pull out of a really sad mood. I allow time for some sadness and after about half an hour, pull myself together for the day.

bcincolorado

Most MO just seem to assume you are in depression if you actually let them know how you are feeling. They need to be more sensitive.

runor

Are sorrow and depression the same thing? Isn't depression a LACK of feeling anything, a flat, unaffected non-emotionality? That's not where I'm at. I was obliterated (not so much now but so bad in the beginning!) with a sadness and grief so intense that it bent me over at the waist. It took the strength out of my hands so it took every effort to hold a cup of coffee. It made me unsteady on my feet so I shuffled. It made my face unable to smile. This is not depression. This is realizing you are going to die. And it's not going to be fun. And people you love will be hurting. And they will continue to live their lives and get married and have babies and move house and get new jobs and you are going to miss it all. MISS IT ALL. This is not depression. This is fucking reality.

SOmeone suggested I should see a counsellor. Why? So some 30 something with perfect hair, teeth and zero concept of her own mortality can spout the words her professor told her to tell people suffering ... "We must make friends with death, it must ride along with us everyday because that is what gives life its flavour and spark blah, blah, blah." Screw that !

Time has finally given me longer and longer moments of not thinking about cancer. But I am NEVER going to be mentally oblivious of my own end date as I used to be. A cancer diagnosis is like being in one of those little toy machines where the glass box is filled with stuffed animals in a happy, colourful snuggly heap. Then a little crane swings in from above and picks one up by the face, yanks it out of the pile and hurls it down a chute. Boink! Surprise! You have left the happy pile of Obliviousness and have entered the cold hard world of Welcome To Your Best Before Date! And it sucks, hard. You can't un-know a cancer diagnosis (or any other severe illness). I know exactly what Alex T meant when he says he is overcome with sadness. Grief. Sorrow. Knowing. Bent and wiped out in the face of the big truth.

Last night I sat at the computer, looked at pages and pages of obituaries while drinking wine right out of the bottle. One day that will be my picture and write-up. One day someone will see my pic and thunk, huh, I knew her. There is no good way to respond to this but open another bottle of wine. Depression? So not.

sherry35

runor- thank you! I feel everything you said with such raw emotion! Just thank you for putting more of my feelings into words!

ShetlandPony

It takes more training, knowledge, sensitivity, and experience than most physicians have to distinguish depression, grief, fatigue, and existential angst. I’m really annoyed that physicians who are not mental health professionals think they are qualified to diagnose mental health issues. Probably insurance does not want to pay for a qualified opinion. It’s good that physicians are trying to pay attention to mental health, but they can be clumsy about it. They can miss the subtleties and distinctions.

Personal experience: Upon stage iv diagnosis I sought out a very good PsyD who had tons of experience working with cancer patients, and paid out of pocket. She understood that my grief was not depression. She helped me understand that I could get through the grief and she helped me do it. She used cognitive behavioral therapy among other approaches. (Yes, I am still sad, but I am not depressed and I am doing pretty darn well emotionally, considering my situation.) She also knew how fatigue caused by cancer drugs can look like depression, and how to tell the difference. And how to work with the fatigue. As another example, I have a relative who lost her husband recently. Her new GP, who had never met her before, “diagnosed” depression and offered a prescription, but it is obvious to me she needs grief counseling and perhaps anti-anxiety meds for a short time.

Another thing that really annoys me is how there must be a diagnosis code in order to get insurance to pay. That means a provider is pressured to put down a diagnosis of depression even if it is inaccurate. Don’t get me wrong, depression is a real thing and should be treated. They just need to be accurate in their diagnosis. Also, the stupid Diagnostic and Statistical Manual that mental health professionals use pathologizes normal human emotions so psychologists and psychiatrists can put down an insurance code. Insurance should pay for cancer patients and others to get help in maintaining mental health, not just to treat diagnosed depression. Preventive medicine.

jaycee49

Yesterday, I filled out a new set of questions for a new portal system at my hospital. One of the questions at the end (it was LONG) asked, "do you have chronic pain?" I sat on that one for a while then marked the no box. Well, what kind of pain? The true answer would have been yes but not after thinking. Would that yes answer bite me at some point in the future?

Thank you for your wisdom, runor. I always appreciate it.

Yndorian

Runor, those are my feelings too. I am in the beggining of this nightmare, balancing myself between a stage 2 and a stage 4 because of a supraclav node. My surgery is comming up soon and I... May I be rude? I wanna die in that table. I think it is my last posibility to die in a compassion way. Of course the rest of my life will be signed by mister cancer, so what is the purpose to live? I don't wanna see a counselor, I don't wanna nothing than my life before cancer

jaycee49

Oh, Shetland, yes, dx codes. On all my paperwork at my MO's office, I have several dx codes. My favorite is:

C50.919 Malignant neoplasm of unspecified site of unspecified female breast

DancingElizabeth

Runor - Thank-you Again - for putting into words - my deepest feelings, that I can’t even articulate inside my own head. (I hear ya on the therapist situation, I’ve tried it many times, never helped, only made me feel more despondent...)

runor

Jaycee, sorry to hear you have an unspecified female breast. How disconcerting! Very out of order for breasts to be unspecified!

Yndorian- forgive me because I am going to be super duper hard core with you right back.

WHy wish to die on the table? Because you think it's your last chance to die a good and quick death? Let's unpack that (and I apply this to myself as much as anyone else).

Yes, you might die of cancer. You have been diagnosed and while it is not guaranteed, it seems probable. Sorry to say. But does that mean cancer has become the ONLY way you are going to die? Hell no! There exists a whole world of unforseen, stupid ways people can die. It boggles the mind. Falling down stairs, slipping in the shower, heart attack while dancing the polka, choking on a hot dog, electrocution while mowing the lawn with an electric mower in the rain and a bad cord, being run down by a herd of angry bulls, charged by a not angry but overall obnoxious rhinoceros. You could develop a shellfish allergy, or bee sting allergy or peanut allergy. You could fall in love with a gangster and be shot as an innocent (or not!) bystander! You could get a tattoo that gets an infection. If you think about it, the ways to die and things that might kill you are endless. Having cancer narrows the possibilities somewhat, but it is by no means guaranteed to be what takes you out. It could be anything! At any time!

Sometimes I think the only way to get beyond the despair and sadness is to get a wee bit bitchy. Or a whole lot bitchy. Defiant. Chin out! Take that Cancer, you bitch, you might kill me, but then again you might not, so suck it! So I am going to eat these prawns, take up beekeeping and go on a safari. I am going to live the dangerous life of a wild woman and if it looks like the cancer is going to win, well, I'll make plans. But if not, wahoo I'm going to have fun!

Do I take my own advice? No. But I try to. I try to tell myself that my daughter and all the bullshit she gets up to is likely going to give me a stroke long before my old age. Yndorian I am trying to say I hope you do not die on the table. You are still very new to this all. It's too raw still, You are still in the middle of treatment. I feel despair and grief and terror a lot. But in between those moments I garden and sew and drink coffee and read this site. My life will never be the same, the knowing will never go away. But in the meantime I'm still here and there are still good moments and I'm not ready to give that up just yet. The day will come when something will put an end to me - that was guaranteed the day I was born and cancer didn't change that. It just changed my awareness of the whole thing. So... it may get us all one day. But not today! Today, drink wine, hug a loved one and smile at a bird - says the grumpiest person on this site! Give yourself some time ...it's too new and too soon to think you might not have some good time left to you. Hugs to you !