STEAM ROOM FOR ANGER

mara51506

Nano, sounds like a BS switch may be in order. Its not their place to be tired of anyone. You should never have to feel that way. You have enough to worry about.

dtad

Do you know what infuriated me today? I just saw a commercial about the treatment of a crooked erection!!!!

Really?? I cannot believe money is being used to study this? I’m not saying sexual function is not important, but we already have millions of dollars spent on erectile dysfunction!

I truly believe that if breast cancer was a male dominated disease we would be much further ahead in finding a cure. I’ve said this before but my dear cousin died of bc almost 30 years ago at the age of 38 after a 10 year battle with this horrible disease. Aside from the fact that she had a radical BMX her treatment was not much different than it would be today. We need better treatment options and yes a cure

WC3

dtad:

There are definately instances of male bias in our society, and medicine as well. Girl's and women's pain is not taken aa seriously, many aspects of female reproductive health are viewed as intangible and neglected in both research and clinical settings, most medications are tested exclusively in men, and most diagnostic standards are determined from exclusively male subjects.

But when it comes to cancer, men get cancer more often and breast cancer is among the most funded of cancers in terms of research

What gets me is, when a guy has arousal issues, it's considered a medical condition, but when a woman has arousal issues, it's considered psychological. The IDC code women get is for "Hypoactive Sexual Desire Disorder" which is a condition defined in the DSM (bible of psychiatric and psychological disorders).

But breast cancer gets a lot of funding.

dtad

Thanks for your reply. However I don't care how much funding breast cancer gets! Its just not enough! I'm frustrated that we are not further along!

WC3

dtad:

I get frustrated that we are not farther along as well.

With immunotherapy and gene editing, I think that we are on the cusp of some very big advancements in cancer treatment though.

runor

Rant.

I hate the fear. The unwanted guest that moved in. It is like a ticking clock. Sometimes it fades into the background and there is a small window of blissful 'not thinking about it'. But when something goes wrong, when my guts are off and I have weird back pain or a headache that lasts for days, I hear the BONG! BONG! BONG! of being on the clock, the countdown is on.

I have been coughing for about 6 months. I have ignored this. I have ignored this because I hate and resent the hypochondriac I have become. Is it cancer? Is the sky falling? Well, the sky fell once and we all know damn well it can fall again no matter what your statistics say. What I hate is how alone I feel with mounting terror.

I remember back in 2017 when all this shit started. I was wiped out with anxiety, dread and despair. I couldn't function, eat or sleep. I dragged myself around, stooped and slack faced, feeling like I was being led to the gallows. Friends looked in from the outside with worried expressions, doing what they could to help and support. And now, I am feeling the same way. I am feeling the dread and anxiety and the mental screaming NONONONO! But I feel like I can't tell anyone. I feel like I am a burden if I say to someone, my god, I am so scared. I feel like they showed up once and gave a shit, but how much of this can they keep showing up for? How many possibly false panics can anyone else give a shit about? If I have lung mets, I know there will be support. But until I know for sure I feel like I have to keep it to myself and bear this crushing misery on my own. Of course Hub knows, he looks at me with worried eyes and goes off to work as he usually does.

Life rolls on. It's a shock and maybe a comfort, maybe a necessity. But my world teeters on the edge of coming off its hinges entirely. It is a painful place to live. And I feel that I can't say anything to anyone, because I am just being paranoid or looking for attention. How I long for the days when an ache was just an ache and not the harbinger of The End. And this might not be the end! Or it might be. And until I know for sure I have to keep it to myself. That's how it feels. Like the enormity of this misery is too much for anyone else to bear, it's not their problem, it's mine, so shut up and take your problem where it isn't blocking anyone's view of the future. All true. It IS my problem. I hate feeling alone with this. I go to doc in 10 days.

I hate this. I hate it for all of us. I don't think I"m alone in this (that's why I post here) although in this quiet, empty house, that's sure how it feels.

kingjr66

hello everyone: i am new to your blog. I am a breast cancer survivor, 6 years now, but I find a need to express my anger and disbelief that my sister who is stage IV breast cancer and in her bones does not care to learn or acknowledge anything to do with her cancer. she is going day to day and does not have a care in the world to want to live longer, to better her health. She says she wants to live but has made no effort. she thinks the hormone and ibrance treatments are going to keep her alive. she was not offered chemo and had only a 6 week radiation treatment to one area of the spine, they didn't even remove the cancer from her breast. She is only being given quality of life treatment. our mother had breast cancer and she is a 41 year survivor. as I mentioned, I am a survivor too, but the both of us had regular mammogram screenings and we are continuing to live. knowing that your mother and sister had cancer, wouldn't you be determined to screen and hope that all is well or catch it before it is too late? No, not my sister. I have begged her for 5 years now after my diagnosis and she always promised. 1 and 1/2 years ago she had a mild stroke and incidental findings on CT scan showed numerous tumors on her spine and skull. she was quickly diagnosed when a lump was felt and found on PET scan. when asked how long she noticed this lump, she lied and said about a year. now, even if it were found a year ago wouldn't you want to have it checked out, no, not my sister. the hospital doctor told me that with the amount of tumors, this disease was evident for least 5 years. But I can't tell her, told you so, or why didn't you listen for the last five years. Jesus, I am so angry. I am now her caregiver. I haven't a clue as to how long she has, what I am to expect down the road, how much pain she will be in, I am not to ask. and everyday I keep thinking I told her to get that mammogram. She just does not want to talk about anything related to her health. she argues with me, and keeps stating that we talk as if she will die tomorrow. What is wrong with her? she is a mother and grandmother. Jeez, just those two things would make me determined to want to live longer and that maybe I should change my bad habits, no, not my sister. her husband died 3 years ago because he had the same attitude with his life. he knew he was sick and kept it all from her. she was so ignorant to his impending death and just did not know how sick he was. blamed it all on his drinking and smoking. does she not watch TV or read the news, drinking and smoking can cause death. he was her mentor and now she is following in his footsteps. I can't get through to her. when the time comes when she is really sick, too sick to care for herself, what will she do then? I can't watch her die, but I can't make her see. I know I am only supposed to vent and move on, but does anyone have any suggestions? I am thinking intervention with the family. maybe her granddaughters can beg her to be open to want to change but they are still too young to know that grandma is sick. Sign me,

Sister who cares too much to want her to go too soon.

ShetlandPony

King, what is it you want her to see? If she is taking Ibrance and a hormonal treatment ( letrozole or faslodex) that means she is under medical care. Do you want her, in addition to that, to worry a lot and be exacting about her lifestyle? That will not cure her. Let her go on day to day feeling ok. If you want her to do more healthy lifestyle things, well I don't think she will listen to you or talk to you about it if you rant and blame.

It sounds like you think she is not doing appropriate treatment, but in fact this approach, with no chemo or surgery, is a standard of care treatment for stage iv with bone mets. It is not giving up. Stage iv treatment is generally aimed at giving the best quality and quantity of life. Chemo is probably not appropriate right now (maybe later), and breast surgery may be pointless as the cancer has already escaped the breast and surgery has its own risks.

Mammograms do not prevent breast cancer. They don't guarantee that the cancer will be “caught early" and cured. I feel your frustration, but the past is the past. Move on from here and enjoy your time together, which could be many years of her feeling fairly well. Let it go, and be present.

I know your feelings of frustration and anger come from your love for your sister. My suggestion is to trust that she is under medical care, so she is not denying her condition. Let the doctors worry, and you just be her sister. Lead by example with your healthy lifestyle but don't nag. Then when a time does come that she needs care, I think she will be more willing to involve you and talk to you about it. That day may come, but it's not today.

leftduetostupidmods

I agree with Pony. She seems to be receiving the appropriate treatment. As much as it's understandable that, because you love her, you'd like her to do more and be less carefree, I am going to be blunt here: it's her life. The bird has already flown out of the cage. She seems to want to enjoy whatever life she has left for as long as she can do it. Try joining in and make beautiful memories instead of trying to drag her down in the pit of despair. As for the false sentiment of prevention mammos give you, my own sister is probably one degree of stupidity above yours. She says she doesn't want to have mammos because "she would rather not know that she has it", as if miraculously her not knowing would make the cancer disappear.

LoriCA

ShetlandPony said it better than I ever could, but I wanted to ask - a family intervention to tell her what exactly? There is no cure for metastatic (Stage IV) breast cancer, it is going to kill her. Treatment at this stage with the cancer in multiple locations is strictly palliative (quality of life) because there is no cure. All she can do is follow her doctor's treatment advice and live as well as she can until then. Hindsight is 20/20 and victim blaming doesn't do any good for any one involved. All it does is create resentment for both.

As Shetland pointed out, mammograms don't always catch it early. I'm one of the "lucky" ones with a rare type of breast cancer that doesn't show on mammograms and has no symptoms until it is advanced. My doctor told me it was likely growing for years without any symptoms. I can't tell you how angry it makes me that the first words out of the mouths of so many people is to ask if I had been skipping mammograms, as if this is somehow my fault. I was healthy and active, never been sick in a day in my life until my diagnosis. No surgery for me, my doctor said it would do me more harm than good. The only reason I'm having radiation now is because I became chemo-resistant.

Every case is different. It sounds like your sister is following her doctor's plan with the Ibrance and hormonals and there isn't much else she can do. Taking good care of her health won't make her live longer unless she's frail to begin with, but it will put her in better shape to withstand the treatments she'll be in for the rest of her life and handle the side effects.

All of those concerns you have - how much longer she has, what to expect down the road, how much pain she'll be in - she has all of the same concerns and it's much scarier for her because she's the one who is going through it. Be there for her, tell her how much you love her, ask her what she needs help with, do fun things with her. Please don't blame her because all you'll do is push her away when she needs you the most.

ShetlandPony

One other thought, King, after reading Lori’s comments: Maybe you could talk with a social worker at your or your sister’s cancer center, to get support and education for yourself as a sister of a person with stage iv. It might really help. Family members deserve care, too.

I also want to point out, as there is sometimes a misconception around the word “palliative”, that palliative care has to do with lessening suffering from the disease or from treatment; it does not necessarily mean the end is near. Stage iv treatments DO have the potential to extend life, in addition to promoting quality of life. I believe that has been the case for me.

Micmel

I had doctors several say it was a cyst, I had another say oh stage two or three worst. Well uh no.! Stage four denovo out of the gate. Aged 45. Do not pass go. Do not Collect $200! Truly screwed. I ran six miles everyday and didn't have an ounce of fat on me. Cancer has no real blame. It just is. Smoking sure could cause it ( am not a smoker) drinking again could contribute (not a drinker either) Now I sit and watch my dying father who did drink and smoke his whole life. He is 77. Weighs 106 lbs. he is NOT dying from cancer. He is dying from other reasons. Cancer knows no rhyme or reason because there isn't any in my family. Just me. My worst nightmare.

And if anyone wanted to tell me how I should be living knowing I am dying. I think I'd have a hard time accepting that in my life. And I'm the one with cancer please let me live and die on my terms. One thing you can't play with, once the diagnosis is handed down is time. Enjoy every minute. Love on her. Because the chances are really that nothing she would have done would have changed the course of the path evil cancer chooses. You just baton down the hatches and fear and terror are front and center. She is mostly likely happily living in denial. And she has every right to be there. She is the one who is actually dying . I am also stage four bone only. I live every day in terror. If you're a survivor. Then you're one of the lucky ones. Can you imagine how she feels knowing that she wasn't? I do. Just love on her. Then when the time comes and she isn't a survivor, sisters love will have the memories to hold onto. Not questions with never any answers wasting time. My father and I were estranged 16 years now he's dying. I am by his bedside. Because I only have this chance to make my peace. This is all I get. My last chance to feel like I did what I could to set things as right as they may ever be. I don't envy anyone dealing with this. Cancer survivor or caretaker. It's all a huge big pile of shit !

Yaniza

Runor, thank you for your "rant". It was exactly what I needed to read at this moment in this quiet house.

WC3

kingjr66:

I understand your frustration, and I don't understand people like your sister who do not care to be on top of their medical care. But she is how she is and now it is what it is.

As others pointed out, she is under treatment, and though she is not as proactive as you might be with her medical care, and may have neglected her medical care in the past, she is not neglecting it now. I don't know if there are other treatments out there for her but her oncologist has probably discussed treatment options with her and she has decided how she wants to live out the remainder of her life.

I think you should just try to enjoy the time you have together.

mara51506

King Jr, I am glad you came to vent with us. As hard as it is to be the patient, it is hard for a caregiver. Your sister is receiving the appropriate care for her Dx. If she finds joy in her life, let her have it. You need to practice some self care. A social worker can help you with your stress about your dear sister.

You did the right thing coming here. You guys still need each other. Remember that your cancer being earlier stage meant more aggressive treatment to cure you. As another person said above, Stage 4 is incurable. Our treatments are focused on quality of life. We need gentler treatments since it never stops.

Enjoy your time with her. Go out like you would normally. If she hasn't mentioned her cancer, that is quite alright. Follow her lead. You'll have good memories instead of conflict. Look after yourself by venting off your stress here or even look over the threads for caregivers. I did not get much chance to check them over before my mom died last month but they would help. Good luck and hugs.

runor

The wisdom and compassion and acceptance of reality in all the above posts rocks me back on my ass in admiration and respect. RESPECT!

leftduetostupidmods

Heh. Talking about the value of mammograms "catching it early". The mammo I had 6 months prior to diagnosis showed nothing. Ultra dense breast tissue. The BOS said it was there for at least 10 years, if not 20, as extensive non-invasive, and just started going invasive in a few months. It was just my family doctor's trust in my instincts when I went to see him, because I was terrified and convinced it was there, that made him skip ahead and order a diagnostic mammogram that made them find it when they did.

On the other hand, I have a good friend who has been diagnosed with the worst form of glioblastoma a bit over a month ago. She had surgery and is doing chemo and rads now, but even if she will be able to withstand the treatment it will mean that instead of just 5-6 months to live she might live 12-15 months. Her and her daughter have been estranged for over 10 years and had started talking again around Christmas. The daughter flew in from another state to be with her Mom for how much it will take. It's very hard on her, as my friend's cognitive and behavioral functions are degrading every day - she has become stubborn, hard to deal with, impossible sometimes, as her brain is slowly being eaten away by cancer. But her daughter is there. She cries, gets her feelings hurt on a daily basis, but is there, with compassion, care and love because she knows that is all the time she has left with her Mom.

pingpong1953

Seachain, so sorry to hear about your friend. What a devastating diagnosis, and so little time to prepare for what's ahead. Her daughter is going to need a lot of support in the months ahead. What a shame they wasted so much time with their estrangement. A good lesson for all of us, I think. 

mara51506

So sorry to hear about your friends Mom. As I said above, the role of caregiver is as tough as it comes. Hopefully you friend gets some relief with nursing and other people to be helpful. I also think it is amazing she can be there with someone she had conflict and hurt feelings. We should all be able to put conflict aside for the greater good.

My own experience with the day to day depression and lack of any symptom relief broke my heart for my Mom. Though I was sad when she died, I was happy her suffering was over. Cancer robbed her mobility and dignity. It was awful. I can empathize with your friend.

leftduetostupidmods

Mara, my friend is the Mom, not the daughter. 2019 didn't start very well for me, emotionally. On the 1st of January, in the morning, when I went to check on my next door neighbor, I found him dead. He was my friend for almost 20 years. 2 days later, the lady I spoke of in the previous post informed me of her pathology results. Next day, the husband of another friend, who was a stage IV BC sister, emailed me to tell me that treatment stopped working and she was in the hospital, loaded with morphine, going in and out of consciousness - she died a week later. Now I'm witnessing this friend slowly fading - the person she was, her kindness, her sweet heart, gradually replaced by what the tumors in her brain are changing her into - we Skype almost daily. It's heartbreaking.

mara51506

I am so sorry Seachain. Cancer is terrible. My own mother died of lung cancer Jan 17 this year. It was painful to watch it rob her of her mobility and cause her suffering. Caregiving as a stage 4 cancer patient really took a toll.

I am also sorry about both of your dear friends. Many gentle hugs.

Cpeachymom

Mara and seachain- I am very sorry for both your losses. It’s a terrible way to start the year. Having witnessed close family members die of different cancers when I was still a teenager, I remember well the suffering.

Dear Runor- could we be sisters? The stupid cough- I always tell people it’s from rads. I finally brought it up to my MO last month. She ordered a CT. Two new spots on my lungs. Too small to biopsy. Recheck in 3 months. WTF?!!

So now I have this hanging over my head for 3 months! I’m deliberately NOT putting things on hold. But I’m scared. I don’t tell people that. I know “most” lung nodules are benign, but the odds haven’t worked out for me. My MO described them as “not definitively malignant.”

And I could never express that fear and heaviness as eloquently as you. Not wanting to be paranoid. Not wanting to burden others. I get it. Really and truly.

DodgersGirl

Cpeachymom & Runor,

I am in that same boat. Always something— is it recurrence or spread? Is it something else?? Don’t want to alarm family over and over. I feel like the little crying wolf.

Developed a cough over the summer. Mentioned it to MO who immediately sent me down for an X-ray,,, heart beats faster cause she reacted so swiftly. X-ray clear. Exhale.

Back acts up. I think it’s sciatica. Referred pain to my right knee. Can’t sleep at night because the pain won’t go away. See PCP who immediately orders X-rays Deep breaths again, heart racing. PCP calls to say nothing out of ordinary (where ordinary includes stenosis and arthritis of my back) with directions to return for Ortho followup if not better in a few days. Well, knee still hurts but I am sleeping again, so I am better

Headache after working on taxes. Is it just a headache or skull mets

Runor, I feel your pain as described everyday. You are not alone

Cpeachymom, hoping your X-ray is clear in 3 months.

runor

Seachain, life is like a fist to the face sometimes, isn't it? I am sorry for these unending blows that just keep coming. Mara, same for you, a hard blow.

CPeachy and DodgersGirl ... (my hands flew up into the air above the keyboard and hovered because the words to convey this new and unique misery are not there). This house is empty when Hub is at work. I talk to myself. I am not the best person for me to talk to about this. One me says, do you think this chronic cough is lung cancer? The other me says, hell, yes I do! First me says, what should we do about it? The next me says, let's freak the fuck out ! Now, I could phone a friend and howl, but really, they can only deal with so much. So I huddle alone here and type my agonizing anxiety out into the world in an anonymous way so people aren't burdened by me, because they don't really know me and don't really need to concern themselves with me. I mean yes, we are all concerned with each other in that we are all in the same boat and hanging on for dear life and thus we IDENTIFY with each other. That is the real value here, the ability to speak our truths, a truth that the Rest Of The World can't really grasp. I remember the day I felt a glass dome fall over me, a thick wall that separated me from the rest of the people. It left me inside that dome, where I could see out and they could see in but we lived in different environments. Theirs: life just goes on like it did before. Mine: Life will never go on like it did before even though to those outside looking in it all looks the same. It is not.

Even now. If this many months of coughing turns out to be an allergy or something, I will feel stupid that I said anything. Like having played the cancer card once, I must step aside with all other issues because I've had my time in the spotlight. Why would I feel that way? I don't know, but I do. It is a very isolating feeling. I hate all of this so much I could puke.

mistyeyes

I know the scary feeling. I was having postmenopausal spotting and was so afraid it was cancer. My husband recently, suddenly, died and I felt like I had no one to talk to. I called my sister and told her, but immediately said it is probably nothing and I am ok. I did go to the doctors and I have non cancerous polyps in my uterus and they are scraping my uterus tomorrow. (d&c) I go and wait for the horrible news and feel relieved that it is not cancer. I feel like I could use a break in life for a bit. I am sure there are a lot of people who feel that way.

runor

Mistyeyes, so sorry about your husband and now dealing with grief and this new worry together. I am forever amazed at how people carry on even when we don't want to.

DodgersGirl

Mistyeyes— so sorry for the loss of your hubby. Big hugs to you

Like Runor said, it is amazing how much we are dealt with each day and keep moving forward.

May you get nothing but good news from your D&C.

Cancer sucks

Cpeachymom

misty eyes- I’m very sorry for the loss of your husband. I hope your d & c is trouble free.

So there it is- the fear and worry we all share.

Dodgers- I’m glad you’re tests have been not cancer. Glad docs are taking us seriously and checking things out. I miss just being healthy.

I had to take my son with me grocery shopping today, because my chest, arm, and shoulder are so messed up from this effing tissue expander that I can’t even carry a gallon of milk with that side. A few years ago I could lift over 100 lbs. I mentioned to him that it must be weird for him. He said, “Yeah, you used to be like Superwoman physically. Now it’s just mentally. You have to put up with all this.”

Runor and Dodgers- May we all have allergies.

DodgersGirl

cpeachymom—. I think I am allergic to doctors and medical stuff

mara51506

Mistyeyes, so sorry to hear about your husband. My thoughts go out to you, your family and all who loved him.