STEAM ROOM FOR ANGER

Yndorian

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

runor

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.

ctmbsikia

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.   

Carpediem56

@runor Well said! I feel the same way!

ShetlandPony

On the Memorial Sloan Kettering Cancer Center web site there is a video of one of their psychiatrists talking about Fatigue vs. Depression.

Betrayal

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

candy-678

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   

candy-678

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. 

Betrayal

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

Peregrinelady

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?

jaycee49

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.

mistyeyes

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.

Beesie

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.

Castigame

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.

JMouse

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.

JMouse

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.

runor

Jaycee, I got goosebumps reading your post.

bcincolorado

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!!!

jaycee49

runor, by the time my onc nurse was de-accessing my port yesterday afternoon, it was 4:30. They chemo room had gotten quiet. I was reading BCO on my phone and she was reading over my shoulder. She goes HA, Rhinoceros. She was reading your post. So you gave an oncology nurse in New Mexico a chuckle. The Pet scan tech jerked her head around to look at me right when I said, "no one around you gets it." Yeah. Goosebumps ... or rhinoceros bumps. Personally, I choose heart attack while doing the polka.

Betrayal

Dear BC:

I had a nurse navigator tell me when I was diagnosed and asked about the BC support group at the hospital where my surgery was performed that they were a "close group and she felt I would not be a good fit." Who knows, she may have done me a favor, but it just struck me as so cold and uncaring. So I did not try to join that group but she did not recommend another group either within their vast multi-hospital system. The next nurse navigator never reached out and when we did make contact, I initially thought she was the department administrative assistant, not an RN.

The next group was recommended by the BS social worker who was an integral part of the team that lead the group. I made a second attempt at a BC support group but this one made me feel like I was crashing a sorority rather than a place to share one's reaction to dealing with the horrors of a BC diagnosis. I tried on more than one occasion to make a connection but left feeling saddened by hearing of other's ongoing battles and envious of those who seemed to have nurse navigators, positive experiences with surgery and radiation and interactions with support people who seemed to want to help. This only deepened my sorrow because I had not had this experience.

The RO felt I had PTSD and offered an antidepressant which I respectfully declined. I was living a nightmare and dulling my senses with an antidepressant seemed a way for the RO to brush off the reality of my radiation experience which was a continuation of my nightmare. Initially I felt the RO was an advocate, only to later learn that this trust was misplaced.

I have had both my RO and MO both downplay my experience and tell me about "patient's who are far more worse off". I realize that in one sense I was lucky to be diagnosed early but I have not been in the higher percentiles for any of my results except the oncotype. My risk factor for BC adjusted for my age group would be 1 in 26, so I got to join the club. Only 6% of BC are left lower inner quadrant and again I got lucky. The chances of my biopsy being positive were < 20%, and again I got the shi**y end of the stick. I could go on and on with how my percentiles are not on the positive side.

It was the cumulative experiences of a unsympathetic radiologist who scared the living sh*t out of me by insisting that I could not leave the department after my ultrasound without a BS appointment because "my cancer could kill me". I was in tears and mentioned that it was Christmas in a few days and he told me "cancer doesn't respect holidays" with the implied message I needed to get over it. He was not soothing at all and the poor tech looked horrified. Word of advice, do not have a breast biopsy over any holiday because the wait for results is prolonged by the hospital staff being "off" so the wait is even more interminable. Unfortunately biopsy specimens can wait for interpretation. So it was a case of "hurry up and wait" so my Christmas holiday was the last time I really celebrated and it was for the benefit of my family. I have not celebrated since and find this time of year to be overwhelmingly anxiety producing. So thank you for reaching out and validating my experience. Betrayal

Yndorian

Jaycee, runor post made me cry and laugh at the same time. I like the polka too. I will take some classes because if you have to do it, you have do it good"

AliceBastable

I heard the breast center I used had a nurse navigator, but I never met one. All the other staff were so helpful about moving me through the necessary appointments that I still have no idea what a navigator does. I was given information about BC groups, but I just can't do that. I've had cancer before (endometrial/uterine) and I was pretty much sent home after my very thorough hysterectomy and told to heal and get on with my life. No support groups. I've had another cancer surgery since the lumpectomy; a total nephrectomy squeezed in between a re-excision and radiation. No support groups for that, either. So even though I have had breast cancer and treatments, I also kind of resent the amount of attention and support it gets compared to other cancers, and I refuse to be part of it.

Meow13

I always think of the people on this site as a support group.

DawnS1962

Meow13 I would be lost without this site. I've gotten so much information here. Being that 1 in 8 women will be diagnosed with breast cancer we need as much support and information we can get.

I was listening to music while walking yesterday and Lay Down by Melanie played. I know the song was written about war, but these lyrics made me think of this site.

Wanderingneedle

I’m so sad that so many have no good in-person support group available. I’m one of the lucky ones that has a good support group in person plus this website. In the next town there is a non-profit cancer resource center funded by donations. It started as a breast cancer resource center and has now expanded to include all cancers. It was started by the parents of a young girl who died of breast cancer at age 26 and had no local resources beyond her doctor. She just wanted someone to talk to.This place offers everything you may need - hats, scarves, prosthetics and undergarments, haircuts, wigs, yoga, art classes, support groups for all stages and for spouses and children, and activities for them too. Special presentations from speakers and lots of helpful people. My group is all stage 4 like me and it’s so nice to be with others that get it, how our disease is so similar but each different and we learn from each other.

ctmbsikia

I too look to bc.org as my support. I needed it a year ago when getting into radiation treatment almost pushed me over the edge.  I found the Radiation forum and started there.  Again, I think sharing experiences is helpful as we all "get it!"

Beesie, hitting the like button for your sword analogy.

My sister and I had the same nurse navigator.  My sister loved her and asked her to run her life for her.  After I was diagnosed and had my 1st consult with BS I had to go back in for a biopsy of my right breast.  Cindy (the nurse nav.) was on duty at the radiology dept. that morning so I got to meet her.  I met with a different Dr.  that morning,  and after she read my MRI she saw another spot on the outer right quad that looked suspicious.  After she left Cindy took me into another private office as she is now assigned to schedule me for another biopsy.  They had a cancellation later that same day and she left it to me to decide if I wanted to do this 2nd biopsy then, or she would schedule for another date.  She could see and sense the absolute terror on my face.  She cried with me.  So, I said we have to know what's going on let's do it.  I had 2 biopsy's on my right breast in 1 day.  Ouch!  One in the mammo machine and one MRI guided. The 2nd bio was performed by the Dr. I had 2 weeks earlier for my left breast.  She was surprised to see me there again.  If it wasn't for Cindy, and my sister for being available to meet me for lunch that day in between appointments I would have lost it-emotionally.  If it weren't for these 3 Dr's.  (BS included here) putting their eyes and expertise on my reports as this was not my cancerous breast, I may not have felt safe and secure.   I know now that I had a very thorough and complete work up.  In fact, after the BS saw and read the reports of that day, she decided she still didn't like this area of tissue and I had another sample taken out during my surgery.  Thankfully, my right breast has been diagnosed with every type of benign condition known to man.

Hope you don't mind me sharing a good experience here in the steam room.   I feel it's important too, no use wasting energy on the bad ones.  At least not today.  I'm feeling good today!!!     Pray you all are too!  Thanks for listening.

jaycee49

ctmbsikia, you were lucky you had that support when getting news of another biopsy. I don't think medical people realize how much we are thrown by an unexpected change. Again, back to my Pet scan this Wed. It was scheduled for 3 PM, later than usual but fine. I had known about it for a week. I planned my day around it being at 3. I got a call at 11:30 asking if I could get there at noon. They had had a cancellation. I don't know about anyone else, but that makes me freeze if not panic. Everything goes out of kilter. Yes, I could be there by noon but I am not psychologically prepared to do that. I didn't say that (so as not to sound insane) but made up some excuse. Getting my port accessed in time would have been tricky so I used that. I probably could have done it but rushing is not something I am good at anymore.

My support is right here at BCO. No nurse navigator. My MO's office has a social worker and nurse navigator but none have been offered to me. I see her talking to patients in the waiting room and wonder why not me? I guess they think I can handle things on my own and they don't want to scare her off. The BC support group in town is all women who had BC 20+ years ago and know each other. It's like a social gathering. They have speakers talk about things like nutrition and exercise. Never a stage IV topic. Once, a BS talked about reconstruction. Not helpful to me.

jaycee49

ctmbsikia, you were lucky you had that support when getting news of another biopsy. I don't think medical people realize how much we are thrown by an unexpected change. Again, back to my Pet scan this Wed. It was scheduled for 3 PM, later than usual but fine. I had known about it for a week. I planned my day around it being at 3. I got a call at 11:30 asking if I could get there at noon. They had had a cancellation. I don't know about anyone else, but that makes me freeze if not panic. Everything goes out of kilter. Yes, I could be there by noon but I am not psychologically prepared to do that. I didn't say that (so as not to sound insane) but made up some excuse. Getting my port accessed in time would have been tricky so I used that. I probably could have done it but rushing is not something I am good at anymore.

My support is right here at BCO. No nurse navigator. My MO's office has a social worker and nurse navigator but none have been offered to me. I see her talking to patients in the waiting room and wonder why not me? I guess they think I can handle things on my own and they don't want to scare her off. The BC support group in town is all women who had BC 20+ years ago and know each other. It's like a social gathering. They have speakers talk about things like nutrition and exercise. Never a stage IV topic. Once, a BS talked about reconstruction. Not helpful to me.

bcincolorado

Betrayal it sounds like you had no medical person who even was at least helpful to you other than the basic care. Only my BS was supportive and caring. It was a woman and she even gave me a card for ever surgery I had and gave it to me before we went into surgery.

That really is awful. The whole cancer team need to be respectful of EVERYONE and how they feel and not just if you are Stage IV right off the bat. Even if it is caught "early" where you have a chance to live a few more years before it bites you again your feelings matter. You are scared. You matter.

candy-678

Jaycee---I think we are soul sisters.  Just the other day I read an article about our local cancer clinic.  It mentioned each patient is assigned a nurse navigator and there is support from nutrition, social service, pastoral care, etc.   I thought  "What".    I have never seen any of those support staff.  -----I wonder if we even have them or if it was just hype to promote our center to the public----- But then I wonder if I was not told of them due to being metastatic.  Maybe those are for the early stagers going thru chemo and radiation.  And we definitely don't have an in person support group in our area---I checked about that.  BCO is my support.  You all are wonderful.