STEAM ROOM FOR ANGER

LimnoGal

AllyBee-I have sat on both sides of this issue, as the employee going through treatment, and as the manager with employees going through treatment. I am truly trying to be helpful with my comments.

First, if your docs have written you off work, but are not keen on writing you back in, there is likely a reason. Sometimes the reason is legal with respect to disability coverage (in the US, if you are released to work with no restrictions, your disability process completely resets). Sometimes you just need to focus on yourself and your family, and getting over this (admittedly shi**y) bump in the road.

Second, if you do go back to work (and your employer sounds like they are willing, if your docs agree), ask for a trial period where both you and your employer truly evaluate your ability to do your work. Agree that you will all abide with the results of the evaluation at the end of the trial period. This is difficult for everyone, because no one (on either side) wants to hurt anyone. This Is a much better situation than going back to work full on and discovering that you can’t really do your job any more. Or worse yet, having your coworkers and managers realize that you can’t do your job ( while you think you can). That begins a long, ugly, and frankly inhumane process of documenting what you can and cannot do.

There are lots of opportunities to contribute in your community that allow the flexibility you may need during and aftertreatment. Walk dogs at the local humane society. Participate in your church or another civic group. Many of these also have free birthday cake in the break room!!

Mental health, both long and short term, is important. Please carefully consider the balance between a short and long term gains in mental health.

I thought long and hard about whether to post this or not. If I can save just one person from going down the hellish path of being shown what all the can no longer do, it was worth it.

Artista964

I was in such a rush for my CT scan appt that I didn't think to stop to give this site info for a lady who was telling another lady that she was just dxd with mbc. 😐

SheliaMarie

There is nothing normal about this “new normal”. I’m miserable - all the time. Pain, exhaustion, lymphedema, the inability to do normal day to day things like clean the house or grocery shop - what kind of life is this? What kind of new normal? I just want to feel like myself again. I’m so angry that cancer has taken my life while I’m fighting so hard to continue living.

Micmel

Sheila~ you're not alone. I live the same way. People just don't understand. I am truly sorry for your discomfort and miserable circumstances... I walk hand in hand with you in the same experiences. Everyday. Every moment. Sending hugs across the miles.

Much love ~M~

candy-678

Shelia-  Sending hugs also.  Cancer sucks.  It effects us in every aspect--financial, emotional, spiritual, our day to day activities, our families, our relationships.  I am a different person since my diagnosis.  And I have lost some friends.  But we keep on keeping on.  

vampeyes

Sheila & Micmel - HUGS. I am so very sorry that you are going through this, cancer does suck. xxx

bcincolorado

Anyone else sick of those "cheery" commercials for people with cancer and the "new normal" they live with now? I'm already dreading October coming when everyone is inundated in pink everywhere you look on TV on commercials even at work I deal with it. Do you think I don't 'know this is an awful disease? Those who have died I've known with it and those who are still struggling with it. We do not need a 24 hour in our face everywhere we go.

Lita57

Yep...sick of it.

I feel like making my own little pin that says, "ALL CANCERS MATTER!"

It's insane....how many effin' years has this Pinktober crap been around? What about colon cancer, pancreatic cancer, glioblastoma brain cancers, soft tissue sarcomas, blood cancers like leukemia, lymphoma, etc.? The list goes on and on. Nobody seems to give a damn about them, unless they come down with one...then it's a different story for sure.

Yes, women have a 1 in 8 chance of getting bc in their lifetime, but when you factor in ALL cancers, we each have about a 1 in 4 or a 1 in 5 chance of getting ANY type of cancer. Two people in my church have just been Dx'd this year with new cancers, but since it's not BREAST cancer, there's no hoopla, no votive candle march, no nothing. These poor people will have to battle on by themselves and with the prayers of the congregation.

I'm NOT attending any Pinktober events this year either. I've had enuf.

Sorry to sound so bitter, but that's the way it is for me.

Sara536

Lita, I like your idea for an “All Cancers Matter" pin. It's hard to remember now, but wasn't the pink breast cancer hoopla started in the first place because women felt that breast cancer research was under funded because it is primarily a women's disease in a male centered world? (Yes, I've always been disgusted by, and kept my distance from the pink parades, but I think they have suceeded in putting breast cancer on the research map.) Maybe the emphasis should now be on eliminating the cancer causing stuff that big business puts into our environment and our food that affects both sexes and all cancers - not to mention the effects on the not-so-insignificant bottom dwellers (krill, tiny fish, etc. of the food chain that we all depend on.

Micmel

I had my DDs bridal shower yesterday. It was wonderful. Yesterday it was.. today I am reminded. “I’m dying”. Sitting in the couch watching all the people live life and laugh. I can barely taste my food... my spine hurts in one place only. Remission. Yeah ok. Then why does my body feel like it’s breaking apart ? Why do I know inside it’s a volcanic eruption waiting to unleash and then I won’t be sitting on the couch watching happiness. People say live in the moment. I tried yesterday and it was hard. Because the sadness of the fear and terror was too loud to hear anything else. I was the one with the grim reaper standing above her with his sharpened sickle. Happiness everywhere and I felt robbed and beaten. I cant find any happiness anywhere. The grief is just too loud. I’m so devastated and cancer has stolen our lives and some of our futures. I’m so damn angry and sad.

DebAL

micmel, I know there are no words so I won't even begin to try. Sending you the biggest heartfelt hug possible.

JKL2017

Oh, Micmel, my heart breaks for you. You are so important to so many people. (You were the first person to reach out to me on this site & I will never forget your kindness.) Please don't give up. Lean on us & take some of our strength until you can find your own. You can do this!

candy-678

Micmel-    My thoughts and prayers are with you and all of us. 

The way I try to explain my situation to others is ---- We all have watched those movies where the woman is hiding from the killer, behind cardboard boxes, etc. And the murderer is looking behind everything and saying " Susie, you may as well come out, I am going to find you."     So far I have remained "hidden" but I know eventually the "killer" is going to come around the corner and get me.     I try to continue living my life, enjoying happy moments.   But it is hard living knowing the "killer" is around the corner, somewhere.....

This group really does truly understand.  

I love you all.    

Micmel

thank you ladies. Cancer turns everything upside down.

JKL~ that warms my heart thank you very much. I guess we have no chance but to move forward. It's like walking into a fire knowing you'll be burned, but you have no choice because you cannot go back. It's impossible. The road behind you Is black and burned. And as you go forward more more, you're exposed to debris flying ashes blinding lights and painful feet and breathing labored because of polluted air. You are stuck. It's a torture to live this way, although in ways we are all dying. My issue is I can see it slowly taking me. My issue is I know it's happening. I always wanted to go fast and swift without pain or in my sleep dreaming of my sweet husbands smile and kisses. Instead my worst fear came true. I have cancer, not only cancer but stage four cancer. At least no one can say I don't do things right.

I'm trying everyday. I am getting tired along the way. Blood work soon. Then Onc visit. I honestly hate all of that so much. Grrrr thanks for The kind words. ~M~

SheliaMarie

The cherry commercials annoy the piss outta me. Where I’m different is that I personally am grateful for the breast cancer recognition, as I have experienced people who think BC is “no big deal”. I think it’s opened a lot of eyes. And pink happens to be one of my favorite colors. I proudly wear my breast cancer and survivor shirts. I will always consider myself a survivor as I continue to live and survive each day. The only thing I think people say to me that is offensive is the “stay positive” bullshit. Questions don’t bother me, and I don’t mind educating anyone who wants or needs it. However, I don’t like having to be the one who makes everyone else feel better about my diagnosis and I absolutely abhor people who compare their aches and pains to mine.

runor

Micmel, time slowed as I read your post. Every single word, clear and precise, like a bullet , went right into my heart and out the other side. You describe so well that exquisite pain that a cancer diagnosis brings. We are alive ... except that we have a pretty good chance of being dead. And that is the first thing on our mind every morning, last on our mind every night and the first thing we think when you get an ache, bruise or feel tired.

I have gained some solid wisdom from this site. I wish I could remember who said to wait two weeks. Have a pain? Write it down. If it's still there in 2 weeks, deal with it. If it's not, then it wasn't important. I am having pain in my boob for days now and I instantly go to the Black Thoughts. But then I remember the two week rule and think yup, that was good advice.

Or when the bad thoughts get too bad I say to myself, yes, I have real reason to be worried. But RIGHT NOW in THIS DAY, I am here and alive, so pay attention to this cup of coffee, this conversation, this ripe tomato I am putting in your mouth. I might die from this, but not today. That was another piece of wisdom I read hear on BCO.

But Micmel, I do know that weird feeling of being there, but not there. Separated. Like I am a distant spectator in my own life. Already gone in a sense, taken away by the terror of being taken away. It is a strange, strange thing and if there is a name for it, I don't know it. It's like you become a shadow. Hugs to you, my friend.

Parrynd1

Thr Pink Parade

Disclaimer: I dont think awareness is bad. People should see how wide spread breast cancer is and demand something be done. I’m very grateful breast cancer has so much funding & movement. Show unity. Show survivorship. Raise money. Show an honest portrayal. All that jazz.

Rant time. It has become a joke almost. Everything in the store is a pink ribbon thing. To me it feels like it diminishes what the people dealing with this disease are going through. Oh it’s just breast cancer. Everyone lives forever with breast cancer nowadays just look at the commercials...This lady is going back to work today not a spot of hair on her body (she must have completed treatment the day before since it hasn’t started to grow back) and she is so happy and perky and doesn’t look like she was fatigued a day in her life. That’s a real cancer patient, someone fighting and fearing for their life, if I ever saw it. It’s a breeze beating/living/dealing with cancer. This IS NOT how I want to be portrayed. Hard chemo that leaves you a naked mole rat is hard and maybe someone out there flew through it like a goddess, but let’s not glamorize it. SHOW the fuzzy wussy was a bear phase. It’s not pretty but it’s what many have to go through. Let’s do a fun run to show we know about breast cancer and sell some more stuff. Maybe I’m just angry, because I know it has served some good out there. When you are in the thick of it rolling down a mountain hitting all the trees on the way down the last thing I want to see is a pink ribbon pep rally. There’s a lot of positive but there’s much suffering that isn’t portrayed by the hyperpinkpoptosis that is breast cancer awareness month. I’M AWARE!

Parrynd1

Micmel,

You have also inspired and brought me a lot of comfort on these forums. All I can say is I share your fatigue, but these are the moments when you say f u to the cancer because that’s when it starts to win. You stay strong not for the moments when you don’t need need it things are going ok, good scans, less pain, you found $1 in your pocket, but right here. Today. Tomorrow. When you feel like if I die today or next week it’s all the same right? What’s a few more days. I know these are dark thoughts, but I think it’s important not to pretend we don’t think them sometimes. Those days are important. The reasons vary for everyone. One more smile on their child’s face. A chance to tell someone something important. Feel the sun on your skin and know you were a tangible good that forever altered the world. I think the word ‘fight’ in relation to cancer might relate not just to the disease, but ourselves. Sometimes I feel cynical about it. I’m not fighting I’m trying to outpace a beast.

Hang in there and if your reason bucket is empty do it just to say f u cancer

Micmel

candy that is truly accurate (as an MBC cancer commercial comes on tv). It’s heart wrenching, and we are pushed along for the ride. Like loosing your footing in snow or ice, skidding along not wanting to move but not able to stop. Knee deep in the mud, or spinning wheels knowing you're stuck. I feel every single word you write.

Runor~ always gets me too. Somehow that connection is there. Even though we've never met. I feel close to you. You take the time to care. That is a Wonderful feeling. To know someone. Cares. I am making sure that I tell people these days. People that I go way back with, sometimes things become pointless to harbor anymore. Especially ones that really didn't even get involved in drama within the family. Sometimes they feel the same way you do and you never would have known. Had you not even spoken. I've cried so many tears. Each one seems to sting lately. Like the hurt has become exhausting to even shed a tear anymore and it's settled into a sick feeling everyday in my stomach, and of course with my nerves shot that stomach turns to pain. We must go forward even though for me , forward has been taken away, I move but it's not forward. It's obeying time. Which again I have no control. I'm weak then strong, strong then weak. It's as chronic as the disease I face. I never know what emotion will un controllably escape my heart demanding to be said. Again no control..... face down on the sandy beach tussled about in the waves, lucky to have found land.. but realizing you'll never be saved.... ever..

Parry~ thank you for caring. Thank you for your response. Reading different opinions thoughts and ideas gives me tools to try to distract my mind. My emotions can't handle anything anymore. My nerves are weak and I fear every little thing. I can understand why women give up. Everyday in syrup wading through just to get the strength to get out of your own mind long enough to remember to eat. Yes... they do understand here. ~M~

Amica

runor

That's very well said. I agree, there is much wisdom on these boards.

I recently read something similar on these boards, I wish I could credit the person who posted it, but she wrote about not being able to sleep and having dark thoughts in the middle of the night, and that she would then tell herself, "it's OK, right now at this moment I am safe in my bed, nothing bad is happening to me at this moment, I am in fact doing fine at this moment lying here safe and secure in my bed" and checking in with herself as she continued to lie awake, and reassuring herself over and over again, that "at least for right now I am alive and OK."

I have used that thought to self-comfort myself, fighting back against the fears and dark thoughts that often come in the middle of the night ,forcing myself to concentrate on the present, and that for now I am alive. And I am not denying that sometimes the current moment may indeed be filled with pain and suffering, but hopefully there is some reprieve from those moments for all of us.

For me breast cancer seeks to rob me of my presence and my present moment. I cry to my own SELF, "Don't leave me" and am fighting hard to not desert myself in hopelessness.

Amica

Micmel

I don't know what to say. Your posts are so expressive and heart-rendering and I wish I could comfort you, and reach across the internet and give you a huge hug. All I can say is I am here in spirit with you, in solidarity. You are not alone, I can see there is much love for you on these boards.

hope and peace,

Amica

bcincolorado

micmel I feel badly for you having to deal with this in what should be a joyous occasion and you are struggling.

Like the all cancer matters idea! If someone knows how to market that bet you can make a fortune selling bumper stickers or window magnets for our cars!

Sara536

The fortune to be donated for research of course!:)

vampeyes

Oh Micmel great big hugs hun, I am so sorry you are feeling this way. Have you thought of talking to someone? I see a therapist and love her, she has helped tremendously with everything that has been going on. Have you tried screaming at the top of your lungs for a stress relief? My DS1 told people "my mom goes to the garage to scream." Embarrassing, but I know I am not alone, a woman I worked with told me she would do the same thing - heck that's like where I got the idea from! haha I hope today is a better day for you.

xxx

TrailDweller

I am grumpy today. Started out with a 10 year old girl that couldn't manage to get her stuff together and get in the car anywhere near on time, then she didn't have any shoes, etc. etc. I then called a provider to add a bill to my already existing payment arrangement, they apparently can't do that. When I asked to speak to a supervisor, he hung up on me, I called back. They will not add the 2 bills together and give me one payment per month, now I have 2 payments per month from the same place at a lot higher amount. Do these places think they are the only bill you have? I'm tired. I'm crying. I'm hungry. I'm sick of breast cancer. I just needed to vent. Thanks.

Micmel

Trail~ you’re not alone. Wrapping you in arms. I understand... we all do. Fu cancer

jaycee49

OK, two thoughts have occurred to me this week, kind of connected. A friend on Facebook posted about having a "minor" throat surgery and then having the recovery way worse than described by her doctors. Several people chimed in on comments that that is pretty common, me included. I think I actually said, "they never tell your the truth about anything." After about 10 or so comments like this, one person had to say, "on a positive note, I hope you feel better." Now, several people had said they hope she feels better, etc. but the "on a positive note" stayed with me. Does there always have to be "a positive note?" Maybe there is not. My friend is a singer, a serious singer. The difficult recovery from throat surgery is a really big deal to her. No positive note. Or any note.

Then that lead me to drug side effects. I have at least two doctors that think that if a patient knows about the side effects of a drug, they are more likely to have it. I've known about this for a while. I finally decided to see if there is any actual research that shows that. Yes, there is. Several studies exist where a control group was not told about a drug's side effects and a the study group was told. The group that was told had more of the reported side effects than the group that was not told. My question is this: is it a question of HAVING the side effect or REPORTING the side effect to a doctor. I think patients are more likely to report a side effect that is known and has been reported before. If you come up with something new, never reported before, you are reluctant to report it. You think maybe it is due to something totally unrelated to that drug. Or you think that your doctor will not believe you or shrug it off as stress. Or your doctor will think you are being difficult or non-compliant. This has happened to me many times. So I have to doubt this research.

On a positive note, I obviously need to stop thinking so much.

Lula73

Jaycee-the answer is that it’s about recognizing the side effects and what caused them. Now, what the docs are trying to avoid in this case is someone having another cause for the side effect, blaming the drug and refusing to take it anymore. For instance, a lady called in insisting that the medication she was prescribed for diabetes (not metformin) caused her to have explosive painful diarrhea for 3 days and she only took took the one dose. Diarrhea is a listed side effect of the drug but not that common. After a little more questioning she’s said the medication and a cleanse she bought at GNC were the only things she did different and it couldn’t possibly have been the cleanse and so she wasn’t taking the diabetes medication anymore. Unfortunately docs are dealing with the general population who don’t always think logically, Don’t understand the disease/condition or it’s treatment and don’t want to. So they just don’t discuss side effects.

KatyK

Interesting study on SE from medications, jaycee49. I struggle with even talking to my oncologist about potential SE which is probably not a great idea but I find they are usually dismissed. Not much they can do about it and we kind of need the meds. I was a bit pissed at the nurse who told me that I was more likely to have SE from Ibrance due to my coloring - fair skin, blue eyes. I did not need to hear that. Fortunately she was wrong and I’ve been on Ibrance and letrozole for a year now with minor SE. And on a positive note - just kidding!

Sara536

I think it is a horrible idea for a doctor not to discuss side effects, and even worse to lie about them. I was told that since I had had very few, almost non existant problems going through menopause, that taking anastrozole would be a piece of cake. NOT! I lasted 4 days and when I reported my side effects to her she acted totally surprised! So much for trusting her.... I think the truth belongs to the patient. Was she thinking that the power of suggestion would negate real side effects? The next doctor I saw warned me that I might experience “a few” hot flashes with the tamoxifen he prescribed. This time I read the fine print and decided that with my family history of heart attacks and strokes and my current age that I was not a good candidate for this drug either. How can you expect that a doctor who denies side effects will be able or willing to help you deal with them?