STEAM ROOM FOR ANGER

jaycee49

wrenn, all your ways of grieving are right for you and not out of the ordinary for people suffering such a loss. Blocked it out and dissociated, PTSD, tried to protect your daughter: normal, normal, normal, if that word can be used in that horrendous situation. Some of us don't howl in public. I know I don't. Most of us fall apart in private as you did. That is normal, too. Coward? Nope. And you DID NOT cause your cancer. That's insane.

Wanderingneedle

Wrenn, what Janet said! 👆🏻👆🏻👆🏻👆🏻👆🏻

We all grieve differently and holding things in can cause stress-related ills. You did not do this.

AliceBastable

Wrenn, sometimes I'm stoic around others when grieving and other times I bawl like a baby. Both are appropriate. Sometimes clamping down to keep from falling apart is how we get through those times, like it's something else to concentrate on.

I get you on the age thing, and "what's gonna get me?" I read posts from people totally freaking out when they're diagnosed, but my reaction was, "Oh, okay. Well, shit. What do I do about it?". Then I realize that I did freak out a little in 2008 when I had endometrial cancer. So I don't know if my calmness last year was due to experience or age. Then when they told me I had kidney cancer right around the time of my lumpectomy, I was sitting with Hubby in the oncologist's office, I said "Alrighty, then" but Hubby started moaning and crying, and I elbowed him really hard in the gut right in front of the doctor and snapped "You're not being helpful!" I'm sure the onc thinks I'm a horrible person all around. 😁 But sometimes, late at night, I ask myself which cancer will come back to get me someday. I bet on the kidney since it was a grade 4. But it could be a new one since I collect them. Or maybe my watch-and-wait aneurysm will blow ahead of schedule. Turning it into a game keeps me from going to the crazy places in my head.

jo6359

alice-Sometimes it's very challenging to stay away from the crazy places in our heads. Endometrial and kidney cancer! That is tough. Life sure as hell isn't fair. I can only recall losing it once in public. It was after chemo number four and I felt as if I was moving in slow motion. I was picking up a few groceries and inadvertently lost my car keys at the grocery store. When a staff person finally found my car keys and handed it to me ; she patted me on the shoulder and said , "I've been there and cancer sucks". I burst into tears and for almost 3 minutes a stranger hugged me while I cried. Thank goodness it was early in the morning and the store was relatively empty. Strangely enough I didn't feel embarrassed. My body needed that release.

edwards750

That totally sucks Alice. I don’t blame you for poking your husband even though I know he was upset. Sometimes we just get tired of being the cheerleader. After all it is happening to us and we need all the support preferably positive that we can get.

My husband is the quiet type. Good thing because I’m not. He’s an engineer so he’s very analytical which is helpful sometimes. I don’t expect him to be emotional because that’s the way he is about everything so I’m way past expecting him to shed a tear. I know he cares but there are times I wish he would take the lead instead of just being by my side. I guess that’s what I get for being fiercely independent.

Diane

ctmbsikia

If I learned anything in life- it sure as hell doesn't get any easier! People grieve and respond differently to trauma, all of which should never be judged because it's neither right or wrong. Some people need help to get through it, and that is a good thing!!! Thank goodness for that!

From reading back just wanted to say my sister was diagnosed @ 50 and me @ 56. Only 1 maternal aunt @ age 70. My genetic tests were negative. Only the 3 of us in a whole big family with BC.

ctmbsikia

Today is my Dad's birthday. He would have been 84. He passed in 2014 and it's amazing how much I still miss him (Mom too)!!! Then, I quickly change my thoughts to knowing they are both at peace now, and also knowing they did not have to deal with both of their daughters getting a cancer diagnosis.

mysticalcity

JCS Librarian--NO children should be in an infusion center due to germs/contagious disease. You should ask the center also if their liability insurance covers anything that could happen to anyone from the children being in there. My guess coming from an insurance background is that it does not.

Artista964

So todays price is right had an audience full of bc peeps. This week is honoring a group, like yesterday was veterans and there will be a first responders audience. A sea full of pink. Wtf?? How about other cancers?? Why not have a mixed group?? That's why I hate this pink crap and bc being the only one with this much awareness. All cancers matter!

Beesie

Rosabella, what a shame I missed The Price is Right. A sea full of pink... What Fun! Makes it seem as though Breast Cancer is the sorority that everyone wants to join. All the fun and frivolity!! Aren't we the lucky ones?

Honestly, what I don't understand are all the women who participate in these events. I found this pic from last year's big Price is Right event (and I blocked out the face so as to be respectful of the woman in the picture). I understand wanting to get together with other women who've had BC and who understand what you've been through. I understand wanting to have fun. I'm all for gallows humor, finding humor in serious things. I can poke fun at breast cancer and some of what I've gone through.

What I can't tolerate are events that present breast cancer in a way that makes it seem easy and fun and just a bit of pink inconvenience. I too don't like the way that breast cancer is singled out. Maybe if breast cancer was grouped in with other cancers, people would take it more seriously and realize that it's not all pink fun and games that everyone survives.

mistyeyes

You know, cancer sucks and its horrible to go through, but my friend was just diagnosed with ALS, and what I am reading on it is a whole lot worse to handle. I feel heavy with such despair that she is going through this, and going through cancer doesn't help me to know how she is feeling.

JCSLibrarian

I feel like so much of this is tied up in fundraising for whatever illness the group represents. And if not money, it is how much can you “care” about those that happen to have cancer. While I do not think it is a good thing to hide sick people, I really do not like parading them around to invoke sympathy.

ALS is awful. A friend’s husband had that and it was so very difficult. He was always aware of the fact his body was shutting down while his mind stayed fine.

Tmh0921

Just a vent about nurses leaving voicemails after hours. My oncologist’s nurse called at 5:08pm, and I was unable to answer because I was in a meeting at work. So she leaves a message asking that I call back tomorrow because MO would like to talk to me.

So now it’s after hours and I have to wait until tomorrow to find out what is going on. I mean could they either say “everything is fine, but can you give us a call” or just call me tomorrow? I’m in that period between DX and surgery right now, waiting on test results, etc. this is just adding to my anxiety.

****Vent Over****

Artista964

ALS and Alzheimer's are the worst imo. Just hate seeing harder to beat or survive long cancers like pancreatic come up unless alex trebeck gives an update.

bcincolorado

I agree about voice mails.

Also not returned calls or emails to the doctor to get information.

Sometimes staff members are clueless when they call.

Tmh0921

I once had a nurse leave a message on my home answering machine on a Friday stating that “they found something in my bloodwork they needed to discuss". I was stuck worrying all weekend, only to find out on the following Monday that my potassium was low and I needed to take a supplement. I mean really, they couldn't have said it was nothing to worry about in the voicemail?

AliceBastable

Jo6359, that store worker was just the person you needed to encounter at that particular time. I'm so glad you got some emotional release.

Oh, Beesie, I LOVE that pink frownie face! I'd wear a pin with that on it! I've been asked a few times why I don't wear BC pink or participate in events. My reply: One, I gave at the office, and two, my kidney, uterus, and skin would get jealous, and the colors clash if I wear them all.

Edwards750, Hubby was fairly stoic through all my medical adventures last year, to the point that I asked why he WASN'T reacting (before the kidney episode). He said he'd had to pull over in the car several times to get to coping level. I recommended that he find somewhere between hysterics and cold fish for the duration. 😀

DogMomRunner

I work with people with dementia. If I get diagnosed with it, I don’t plan on dying from it. ALS is even scarier.

Kids have no place in an infusion center. No volunteers at mine. Just trained medical staff and patients- the way it should be.

I had to wait overnight to find out MRI results. Playing phone tag with the BS. Just leave the results on the voicemail!!

edj3

My MIL has Alzheimer's. We are lucky if I can use that word with such a dreadful disease because she is content and happy. She remembers us, but loses most of the day to day details (in a phone conversation with my husband, she said she must have had breakfast because the tray was still there, and she guessed she had eggs and probably bacon because it would be weird to have eggs but not bacon).

He did tell her about my BC, mostly because other family members might mention it when they visit. She hasn't remembered, and I'm glad. I want her to stay happy and peaceful and I hope like crazy she goes before she's no longer herself.

runor

I find that pink shirt offensive and so should Drew Carry (Kerry?). I survived breast cancer to see Drew? Why in the name of god would anyone dump that blast of guilt and obligation on the poor man? It may as well say, 'I drank poison to guilt someone into letting me on The Price Is Right'. No one survives breast cancer to see Drew. We go through treatment to avoid death, if possible. It might be more acceptable (to me anyway) for a shirt to say 'I won't let breast cancer stop me from making a fool of myself on national television'. Fair enough. IT's not like breast cancer makes dumb people suddenly smart. But if I was Drew I'd have been mortified that anyone would survive anything as gruesome as breast cancer to see me. What a horrible thing to dump on someone!

jo6359

Last year was my first pink October. Initially I was really dreading the whole month. My BC mentor asked if I would be willing to walk with her group. I told her no because I was still going through treatment and it was a group for survivors. She said if you have breast cancer you are a survivor. I don't agree with that logic. I did participate in the one mile walk with the group, I found it to be very emotional. It isn't anything I would do again. I do volunteer for numerous breast cancer fundraisers and have for many years. On a positive note, pinktober provides opportunity for education and it raises hundreds of millions of dollars for breast cancer research. Of course the focus should be on the cancer throughout the year and raising money for research. Pink is my favorite color.

Beesie

runor, I posted that picture specifically because of the t-shirt. Drew probably found it humorous (I don't know, I don't watch the show) but I think it trivializes breast cancer. Many women with breast cancer go through hell to survive (or to survive longer) and we all strive to survive because we don't want to die before our time (at 102, of old age, peacefully in our beds). We have spouses, children, parents, siblings, friends... we survive for them. We survive for ourselves.

All that said, for myself, I have never been comfortable with the word "survivor". I think of my treatment and consider myself lucky, as compared to so many others with this disease. I've dealt with a crappy situation and I've gotten through it. Up to this point, while breast cancer forces me to face my mortality, I've never felt close to death. So I don't feel I've survived anything. I'm always aware that the crap might still catch up with me one day but I don't live my life worrying about that. There have been other situations in my life that have been much more difficult on me emotionally, though not physically. That's where I would be more inclined to say "I survived" because there were times when I wasn't sure I had the strength to survive or even the will to survive. Luckily, I haven't had to dig deep within myself to make it through my breast cancer treatments or survive breast cancer. So I will never self-identify as a breast cancer survivor and I would never want someone else to put that label on me. That's something I think we all have to define for ourselves.

DogMomRunner

edj3 - my mom has dementia. She knows something is going on with me but not sure (week to week) what that is. She and my dad (and one of my sisters) live in my neighborhood so I can help care for her. No other medical issues. Still mobile.She will probably live a long life.

wrenn

My mother had Alzheimer's and didn't seem to notice or struggle. I have the gene and am disturbed by my memory loss but I figure once it gets bad I won't notice and my memory loss might not be related. I am terrified of ALS. That is the scariest disease in my opinion. Like Beesie my cancer diagnosis wasn't the worst thing to happen to me but I have been very lucky with mine (hardly any pain from surgery and no treatment). I am sure it is an entirely different experience if treatments are affecting life in horrendous ways as seems to happen to many.

off topic and regarding genes...I did Color Genomics and they check much more than BRCA but I think there are still many more that will be detected eventually.

AliceBastable

Beesie, hear! hear! I've gotten into it on other boards (for other cancers 🙄) because I won't call myself a survivor. If I did, I'd have to also call myself a hip replacement survivor, a disc repair survivor, Mohs surgery survivor, etc., etc. To me, cancer survivors are the ones who live with stage 3 and 4 and treatment for the rest of their lives (not sure about the 3s). The rest of us had a nasty experience, some nastier than others, but nothing that was life-threatening at the time. Could it come back to bite us later? Sure. We can also develop heart disease, any number of neuro-muscular diseases without a cure, kidney disease... but like those, if you don't have 'em yet, you're not a survivor of 'em. I might be okay with a shirt that said "I had breast cancer and I support funding research and support services." But not in a "survivors" walk.

I may have mentioned upthread that my niece is a genetics researcher working on Alzheimer's. She was recently a co-author on a published paper. I am so damn proud of her.

jo6359

alice-What is the name of the publication in which the article was published?

AliceBastable

Jo6359, I don't know, some academic/scientific one, but I don't remember. I'll try to dig back through her FB posts if I get a chance. If I remember from glancing at it, it was very technical, which meant I couldn't follow it.

Beesie

My mother has Alzheimer's and is at the point now where she is really struggling with her memory, her comprehension and her physical abilities - many basic physical activities require a lot of brain activity, so as brain function declines, so too do some physical abilities. She is still at the stage where strangers might not pick up on the fact that she has Alzheimer's but after a short time with her, it's clearly evident. She knows something is very wrong but doesn't know what. It's brutal, very disturbing for her and very difficult for the family. I think Alzheimer's presents somewhat differently with everyone, and how people cope relates very much to their personalities and how they've always coped in life, so I think the experience is different for everyone.

Alzheimer's scares me, but I'm too old for early on-set, and I think I would understand much sooner than my mother about what is happening, so it doesn't scare me that much. ALS on the other hand, that's probably the worst. I also fear stroke and a heart attack, because of the suddenness. It's horrible to see people with cancer (or any disease of this sort) suffer, and I hope that the medical community and as a society we get better at alleviating suffering, but with cancer, there is an opportunity to plan, an opportunity to get things in order and an opportunity to say goodbye. In different jurisdictions, there is even an opportunity to leave on one's own terms. A sudden fatal stroke or heart attack does not provide that opportunity, and that scares me. Perhaps at 85 or 95 or 105 it's a good way to go, but in one's 60s or 70s, not so much.

Xxxxxxxxxxxxxxx

I could take a sudden fatal hearth atack. While I'm dancing polka, like Runor said

AliceBastable

I had an aunt with some form of non-Alzheimer's dementia. It was rough because she realized what was happening, at least for a long time. She'd get so frustrated talking to us, and crying out, "The words aren't there!" Every time I have a memory problem incident, which are more and more frequent, I think of her. And I think of how much younger I am than she was when her mind started betraying her. Both of my parents stayed extremely sharp mentally up until the day of their respective deaths, both in their nineties. I want to be like them!