STEAM ROOM FOR ANGER
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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.
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Oh, can I borrow that, "looks can be deceiving" thing? Good one, Candy.
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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.
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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.
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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.
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runor- thank you! I feel everything you said with such raw emotion! Just thank you for putting more of my feelings into words!
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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.
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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.
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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
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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
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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...)
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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 !
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runor - those all ways of die sound lovely! I really aprecciate your words but it seems that today is not the day. Maybe you are right and I think this way because I'm a novate in cancer world. I still have to learn how to live with this sh@#t. Anyway I know that I don't gonna die in the table, I've never been a lucky girl
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Yndorian, learning to live with this shit is the daily battle for all of us! Somedays you win, somedays you lose. Somedays you want to slug someone in the throat. It rattles you to your very core, to the soul and every single person on this site knows EXACTLY what you are struggling with. It sucks. Hugs to you.
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runor and Shetland-
Thank you for the distinction between sorrow, grief and depression. You are exactly right and totally understand the feeling. Coping skills a must. I've been known to use wine as one of them.
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@runor Well said! I feel the same way!
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On the Memorial Sloan Kettering Cancer Center web site there is a video of one of their psychiatrists talking about Fatigue vs. Depression.
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Hi, I am new to this site and cannot figure out how to post either my diagnosis or treatment. I have been lurking for nearly 3 years and finally summoned up enough courage to participate in an online support group. I tried the real thing and found that I was the square peg in the round hole, left sadder than when I came, and felt my concerns were trivialized by others within the group. True, I was the new kid on the block but I was having a rough time and needed some kindness. So many on this site have expressed those feelings I experience regularly, so I am glad I am not alone. I have not disclosed my diagnosis to many within my social sphere, including my family, because of the reactions I have seen them exhibit with other health issues involving peers or relatives. I have enough trouble propping myself up without having to prop others or to be told that I am "cancer free" and need to move on.
This specter will hang over me for the rest of my life and as I am not "young" I still would give all I have to return to my pre-diagnosis life. In a matter of months I became a grandmother, had a call back for a repeat mammo (not my first time), had an ultrasound performed by the most uncaring physician I have ever encountered, met a breast surgeon the was equally uncaring and had the worst Christmas ever. To this day I cannot celebrate Christmas, which was once my favorite holiday. My biopsy was performed on New Year's Eve day and the results were not posted until I called the surgeon on January 7th. He had known for 24 hours but never called me. So these are some of the experiences that lead to my feeling betrayed by those who should be providing "care", thus the moniker "Betrayal". I am still searching for the stabilizer in this nightmare. So I am looking for kindness, sisterhood and a feeling of belonging. Betrayal
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Runor-----I LOVE the way to say what I am thinking. I wish I could word my thoughts like you so brilliantly do. I too tried the counselor thing. I went to 1 visit. She was nice, but she said she didn't know where to place me - depression, grief, etc. She said she didn't have a spot specifically for cancer patients---the thing with living in a small town. We deal with drug use and divorce more than MBC in my town I guess. So I never went back to her. YOU ALL ARE MY COUNSELORS, MY HELP.
Betrayal---Welcome. You will find support here. I am not very good at computers, but I will try to explain how you can post your info. Go to "Setting" and follow that, I think. I will finish this post and review how to do it
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Betrayal---Go to "My Profile" at the top first and follow that, then go to "Settings" to choose what you want Private and Public. Hope this helps. Try it and post if it doesn't work.
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Candy 678
Thank you for the welcome and the directions for how to enter my diagnosis and treatment. I am hoping it will be displayed with this message.
I chose this site as my first visit because it was one I could identify with as I am still angry about some of my past, as well as present, treatment or mistreatment would be a better descriptor. I am trying to work through some of these issues but find, like others here, that there are days when I am overwhelmed by sadness and have no one I feel comfortable opening up to. Thanks, Betrayal
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Runor, I am curious why you are convinced that you will die from this disease when you have not been diagnosed with MBC? Is there something that is not in your profile that makes you think this?0
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I had a new Pet scan tech yesterday. She had BC in 2006. No recurrence. She said she was still plugging along. I said, "I get it. No one around you gets it but I do." She teared up. She just looked at me hard and said nothing for a minute. Then we moved on and did the scan. I was amazed. I would never have said that if it weren't for you guys telling me how you feel.
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ctmbsikia - I have used wine as a way of coping also. Try not to do to often though.
Jaycee - I bet she felt validated and relieved that someone "got" her. It seems so hard sometimes for someone to really know and maybe you just can't really know unless you have been there. I am glad you talked with her.
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jaycee, here's how I see it, as someone who's had an early stage diagnosis.
Everyone of us, all humans, will eventually be caught by something. But we don't know what and we don't tend to think about it. However once we've had a breast cancer diagnosis, we can now actually see a sword hanging over our heads. We know it's there. What we don't know is whether it's a heavy sword hanging on a thin wire, or whether it's a light sword hanging on a thick titanium-reinforced wire. As time passes from the diagnosis, we tend to look up at the sword less often, and we hopefully put it out of our minds as we move on with our daily lives. But it doesn't take much to remind us that it's there. I would imagine that this is particularly difficult for someone like the PET Scan tech who you saw yesterday. Even with a diagnosis 13 years ago and no recurrence in the time since, because of her job she is reminded daily that this sword is hanging over her head. Good for you for saying something. I'm sure it meant a lot to her.
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Sisters if I may.
Yes I am still arrrgh angry at bleeping c even after I was able to go thru all the beatings I needed to get. The kind of beatings may not be as harsh as some of you sisters but it was enough for me. 240 medical claims on 10.5 months of hiatus from work.
Yes I am on two different SSRIs which I cannot get off. Those SSRIs probably means I won't pass drug test in case I go for another job. Now my hubby's job is on the line. He is 58 yrs old btw. He was so confident that we may be able to pay for new windows. I had to get two diff 0% promo APR in order to pay for $13000.00 windows. Have no idea what we are going to do when the 0% expires. Been thru hubbys employment gaps a few yrs ago but I was a lot younger and no health issue. I am scared that I may snap at him.
On a different note, about life I draw inspiration from my 92 yr old father who had COPD, two strokes in 30 day period, rehab stint, home free, pneumonia hospital stay home again. He may be physically handicapped but his surviving spirit is remarkable. Lastly he uses his condition to get money out of his good children like there is no tomorrow.
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jaycee49, that was an amazing thing you did for that tech. I admire you for it, truly.
Yndorian, I understand your wish to go out mercifully. I'm new to the nightmare as well and have my own teeter-totter act. The dread is soul crushing. Yet, selfishly I still wish to encourage you to survive. I'm just so angry at cancer stealing my old self and making me fear the rest of my days.
runor, your explanation of the grief and sadness this disease brings was so so true for me, too. Thank you for posting it. I couldn't have expressed it as well.
Yesterday, I had another compassionate professional learn That Detail about my cancer and say "Oh" with a kind, sad smile and then more softly advise me just to enjoy the next couple years. The chasm splits wider every time someone without cancer tells me not to dream but still be happy.
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Shetland, I'm glad you found amazing mental health care. I have tried counseling through my insurance, and the office requires you to fill out a survey before each visit to gauge you depression and anxiety. Are you having trouble sleeping? Are you having trouble doing daily activities? Are you having trouble concentrating? Are you sad most days? Anxious? There is no spot to write in I HAVE / AM BEING TREATED FOR CANCER. I suspect most of us who seek proper counseling are not getting it.
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Jaycee, I got goosebumps reading your post.
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Betrayal I agree that often you feel that how you feel get trivialized in a "in person" cancer support group. If you are not basically ready for hospice they think your feelings and medical issues related to cancer treatments are not relevant and you should not be there. Felt not for me either. Makes it hard to complain to MO often as well. I do not want to report issues as a result because then you are seen as being "whiney". We all have our own pain levels too and they sure forget that!!!
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