STEAM ROOM FOR ANGER
Comments
-
I gently remind people in my life who think I will live 20 years that it's highly unlikely. I have a decent life and do not worry about too much now but that can change. The terminal DX does not bother me, my family should be aware so it doesn't whack them over the head when it happens.
0 -
Agreed dtad.
My new MO had the decency to tell me that fully 20% of women cannot tolerate AI's. Sadly, I am among that group. My side effects were extreme, including notable vertigo, at which point I quit trying. I most probably have a met to my lung now, and do not regret my decision. There was no point for me to spend 5 years, curled up in an immovable ball screaming at everyone around me. I further found an article describing late onset schizophrenia in women with severe drops in estrogen. Reinforcement for my personal choice. I would never judge someone's choices and hope the same courtesy is extended to me.
All the best
0 -
An unmovable ball is a great description! I question why we are forced to take the generics made in foreign countries and whatever is cheapest to the pharmacy on a given day. Who knows what we are really getting?
0 -
I'm kn the 20% who can't do AIs. Luckily Tamoxifen isn't bad on me.
0 -
Movingsoccermom: My mom had an histerecthomy and oosph at 46 (not related with cancer but still) she is now in 75 and she has any kind of dementia in initial stage (she is taking memantine and donepezil) After read your post I can relate both things
0 -
I hate the "Are you going to blame yourself if the cancer comes back?", No I am not! It is kind a form of bullying. Like you weren't selfless enough to do the hard treatment, you wanted an easier path. I want to live with my QOL intact.
0 -
Yndorian, so sorry to hear about your Mom!
Meow, indeed. There are only hard choices and screaming at my loved ones was not a choice for me. And someday I hope to beat my DH (exceptional tennis player) at his own game!
All the best.
0 -
meow, totally agree! My MO first said to me you have to have no regrets, then when she saw what had happened to my bone density she said I couldn’t take it, I had given it a good try. I just wish they would be upfront with a personal risk benefits so we can all make an informed decision on what is best for each of us.
Truly it is an individual decision, based on each individuals situation, lets all just support each other.
0 -
Families do not understand the choices at all unfortunately. I do not share everything with mine at all and if something comes up then they try to give me a bad time for "not sharing". It is that we do not want judgements from them and complaints. It is our life. We are tired. Sick of doctors. Sick of feeling sick and tired. Too old before our time.
0 -
I am using this thread for its intended purpose! As the boss at my work, I do NOT want to take my frustration out on my employees but find myself more thin-skinned and easy to aggravate than I can ever remember. So here goes!
1)Deliver me from zealots. Pink zealots. Things happen for a reason zealots. Religious zealots. Cult vitamin and diet/nitrition zealots and you will be fine zealots.
2) Deliver me from people who haven't googled The Ten Stupid Things Not to Say People with Cancer!
3)Deliver me from people who want to engage me in long conversations about my treatments when I have a caringbridge account I have asked people to read in order to compartmentalize and avoid such conversations.
4)Deliver me from the medical bureaucracy and the siloing and lack of communication between departments.
5)Deliver me from people who tell me I shouldn't be stressed and then do things that cause me stress!
I feel better already. On with my working Saturday before I start radiation on Tuesday.
Live your life. Live your life.
0 -
movingsoccermom...My BS at a major NYC teaching hospital told me 40-50 percent do not complete the recommended time due to side effects. I'm happy for anyone who does well on anti hormone treatment. I'm not disputing that they can reduce recurrence rates. I just don't understand how with that high of a non compliance rate it can be called an effective treatment. Good luck to all navigating this complicated disease.
0 -
Simply YIP Haliday
0 -
okay. . I give up. What does YIP stand for?
0 -
YIP- year in photos as per my niece. I'm not sure what it meant in the context written in the above post The only time I ever use yip it's when I'm referring to my yip yap dog
0 -
Haliday - awesome post! Take care.
0 -
I JUST HAVE TO VENT. I AM SCREAMING RIGHT NOW. I WAS TALKING WITH MY SISTER. SHE COMPARED MY SITUATION--MBC--WITH HER HUSBAND WHO HAD TO TAKE A JOB IN A LOWER POSITION. SHE SAID THAT LIFE IS NOT FAIR. THAT HE HATES HIS JOB AND DID NOT GO TO COLLEGE FOR THE POSTION HE HAS NOW. I TOLD HER THAT IF I HAD MY HEALTH, BUT HAD TO TAKE A LOWER JOB I ENVY THAT. THAT MY MBC IS INCURRABLE AND WILL SHORTEN MY LIFE. AND THEY SHOULD NOT BE COMPARED. WE ENDED THE CONVERSATION SCREAMING AND I HUNG UP.
NO ONE UNDERSTANDS. I HATE THIS CANCER. I WANT TO BE HEALTHY. I WOULD WORK ANY JOB IF I ONLY COULD HAVE MY HEALTH.
0 -
That sucks!
Too bad we can't "unfriend" family members.
0 -
I think we have to look behind the reasons why people make these totally absurd comparisons. Some are trying to be kind and sympathetic (although failing miserably) whereas others are being mean and self-centered.
It might be that they are trying to relate, and they are using the closest example they can think of from their own lives, in terms of something that worried them or upset them. "See, I understand what you are going through because this is what happened to me"
Or it might be that they feel left out or ignored and are trying to shift some of the attention and sympathy over to them. "Yeah, you've got cancer but It's not all about you" candy-678, I'd guess that your conversation with your sister falls into this category.
Many many years ago, someone on this site made a comment that has stuck with me all these year later. I even remember the context - a newbie was completely freaking out over an upcoming biopsy, making comments to the effect that she couldn't imagine anything worse. She kept posting about how the diagnostic process/biopsy was the most horrible experience she'd ever had and how she couldn't imagine having to go through anything this awful again. Since most of the people responding to her posts and trying to reassure her were women with breast cancer, many took offense. What the very wise member reminded everyone was that "The worst thing that has ever happened to someone is the worst thing that has ever happened to them."
My breast cancer diagnosis is early stage, and while the associated risk still scares me, my feeling is that I got lucky and dodged a bullet. I recognize however that my attitude is based on the fact that I've gone through something that was much more devastating and life changing than this breast cancer diagnosis. I regularly remind myself, as I read this board and respond to posts, that many of the women here, even those going through just a call-back or biopsy, are going through the worst experience of their lives. And when someone says something totally absurd to me, if I feel that they are trying to be kind and empathetic, then even if what they said riles me, I consider the intent rather than the words. Well, I try to, anyway.
0 -
Wow, Candy, that seems brutal. I admit that I knew practically nothing about breast cancer before being involuntarily and unexpectedly thrown into a frenzy of research about the disease(s) three years ago. Still, I would hope that even I in my ignorance wouldn't think to compare Stage IV cancer to a job downgrade. I'm sorry that you had that experience when you instead deserve compassion and support.
Beesie, I'm editing my note that "crossed in the mail" with yours to acknowledge that I think you made some excellent points. Thank you for sharing the thoughtful post.
Lyn
0 -
Here's another explanation. She is still in denial about what your MBC really means. If she compares it to her husband's job, she can make it small. Or maybe she doesn't really know what it means. Or she is trying not to know what it means. Another form of denial.
0 -
beesie- I agree with you. Most people aren't deliberately trying to be mean. When I began treatment I had one rule when I would go out with friends. For 5 minutes,they could ask me anything they want to about my cancer after that I wanted to focus on their lives. Notwithstanding, some people are clueless, ignorant and sometimes mean. Frustrating when you are in the moment.
0 -
Thanks guys. My anger has subsided and replaced with some sadness for my relationship with my sister. I love her and I think she loves me (deep down). I just wish I could get support and comfort from her. That she could tell me "It is going to be ok, I will be beside you". But I don't think I will ever hear that come from her. I do think some of it is denial about how serious this really is.
0 -
Candy, there is probably another dynamic going on that I just thought of. Sisters. If one has BC, the other(s) are more likely to be diagnosed. I have two sisters. Both had BC. One did not survive. The other is fine. After each diagnosis, I felt really conflicted and confused. Was I mad at them for increasing my risk? Sort of ... maybe. But what I really wanted was for them not to have it. I actually thought it would be really unlikely for all three of us to have it and for me to also have MS. Wrong again.
0 -
Have room for 1 more tonight? I’m.just.mad
0 -
My rant for yesterday was that my oncologist can't seem to understand that I also have work schedule. In between the BS, MO, echocardiograms, seroma drains, lymphadenopathy therapy and chemo teaching appointments, I have got to put some time on the time clock. No work hours, no insurance. No insurance, no treatments. Yesterday I went to an appointment (4 hours) out of a work day and the appointment was for the next day. It was a mutual mistake - the receptionist told me Tuesday but put it on the schedule for Wednesday. Now I have to take time off on Thursday for the rescheduled appointment.
0 -
For some reason unknown to me, man and maybe God, oncologists, surgeons and particularly ROs think no one works. That somehow we're all on disability or something. And maybe most women are. More power to them. It drove me crazy during early stage treatment.
I actually had my RO say to me (4 weeks into radiation), "you mean, you're WORKING? Full time??". I wanted to ask him who he thought he was dealing with but must have found some tact somewhere. And I KNOW there were plenty of others working through radiation. They had the 7:30-8:45am appointments, after which they were going to work.
I now have my oncologist trained. Yes, I have some business trips. No I can't be here next Tuesday. But it took a few years.
0 -
My first RANT...just been to an appointment with Onc ( who is very nice) in order to get CT scan results, only to be told there is a 4-6 WEEK backlog on the reports!! We are very lucky to have the NHS, but my God REALLY??
She took a quick look at pics and said she didn’t see anything major... what does THAT mean? Obviously she needs to wait for the report too and she’s just as frustrated as me, but COME ON!!
The phrase in Glasgow for how I feel right now is “ Pure Bealin’.....!!!!”
0 -
I had the most difficulty with scheduling radiation sessions since their 7-3:30 schedule was in direct conflict with my work schedule. My work schedule differs by day of the week from Monday through Friday and I do not have the option of just leaving for an appointment. I teach so I have to work around that schedule. They wanted the sessions to be scheduled for the same time each day claiming that "this was the best for my treatment", but it was not the best for my angst. They were frequently late, insisted I show up 15 minutes before my scheduled time and many a time I waited 45 minutes or 30 minutes beyond my scheduled time in a waiting room with many others. I felt their schedule was too tight and did not consider the actual time each person required, did not allow for glitches with the equipment which did happened several times and did not consider how humiliating it was to sit in a waiting room in a robe. True, we were all there for treatment but I did not feel comfortable when I felt others knew what my diagnosis was by my mode of dress for treatment. There were times I needed to change my time due to work issues and I always provided advance notice. But then found I would be sharing the same time slot with others and sometimes the wait stretched to over an hour meaning I missed meetings at work. The best was when they announced on a Wednesday that the machine needed to be recalibrated on a Friday afternoon and all afternoon appointments would need to be rescheduled. I tried to reschedule but all early morning appointments were already taken and nothing else would work. When I told them I could not make the time they suggested, I was given the lecture about how important it was for me to have "daily" sessions and that this could have a negative impact on my treatment. I was pissed because this was not of my doing and could they not have scheduled the recalibration for the weekend when they were not in service? I know others have missed sessions related to skin issues so wonder if they were given the lecture I received? This was one reason I hated the radiation experience but not the only one; there are multiple other reasons.
I have been lucky with scheduling MO appointments but had a problem with the BS since their office hours were also restricted by day and times not for workers. It made it easier to fire the BS then to reveal my real reason for never wanting to see them again. The BS referred me to their choice of an MO but again their hours of availability conflicted with my work schedule and I was told if I was late getting there, I would be charged for the appointment but would not be seen! I was also told I had to arrive 15 minutes early, so yes, we are expected to be accepting of waiting but the MO was not. I found another MO in the same practice and am satisfied. We have our moments when we don't agree but for the most part she listens and tries to find a solution that is mutually acceptable. She is on time and never ends an appointment until we are done talking.
0 -
Good grief Betrayal what an inconsiderate place. I scheduled my treatments when they opened in the morning. I wanted to get it over with however, my initial appointment was not on time. I sat inthe waiting room for 30 minutes and then the nurse called me on my cell asking where I was. Needless to say I unloaded on the staff. The RO didn’t know either. They were never late after that.
I guess they think you can just drop everything to meet their schedules. Duh. Have to work. Fortunately for me I was on medical leave so I didn’t have the issues you do. Just what you need more stress. Not.
Diane
0 -
I hated radiation. Mine was at the hospital. One machine, 2 RO's on staff. I remember asking the RO at the consult appt. how many patients are being treated. Absolute nightmare of a schedule. It was obvious to me walking in that there are too many patients to treat and there are only so many hours in a day. My simulation failed doing the breath hold, so I (yes me the newbie to bc and especially left side) requested to then be treated in the prone position and the RO agreed. More appointments, waiting for the planning, the 2nd simulation was OK and I got my 1st treatment at 9:00 at night. Out of the 30 treatments, I think 3 or 4 of them I was in and out in the 20 min. time span. The rest of the time I was waiting, and waiting. I made some friends! One older feller just came right out and asked, "Breast cancer?" The robe must have gave it away! Having to keep to a schedule that only worked less than a quarter of the time, work, and still try to process the diagnosis and gain knowledge about this disease, is enough to give anyone fatigue!!!!
Thankfully I have an understanding employer. I scheduled as late in the afternoons that I could -not knowing how long the line was but at least knowing I could go home afterwards. They called numerous times with changes so I just resigned myself to the fact that I was literally at that machines beck n call night or day. It was the only way I got through it. I wanted to pull that bell off it's borings and throw it out the window! Hope I don't have to go there again. Good riddance.
0
