STEAM ROOM FOR ANGER

AliceBastable

JCSLibrarian, it's insane that people receiving chemo are being used as guinea pigs for some random kids to learn empathy. And that volunteer coordinator needs to be reminded of who has priority in a medical setting - the patient! What an idiot.

P.S. I have an extreme Resting Bitch Face that I have used to flatten annoying children against a wall, quaking in their grubby little shoes. I'm willing to teach others how to use it. 😈

jo6359

alice- you never fail to make me laugh. My previous chemo unit did not allow volunteers on the unit. There are many ways for children to learn empathy. I personally would not appreciate a child volunteer on the chemo unit.

RosieRed

JCSLibrarian - If the volunteer coordinator wont listen to you, then I’d bring it up to the patient advocate at the place you get your infusions. Getting chemo is uncomfortable enough without needy volunteers waiting to pounce when you barely make eye contact with them. And no, it’s not ok for them to ask about your treatment. That’s a HIPAA violation. There are many other things to talk to strangers about, like the weather.

The infusion center I went to had a policy of no children under 16 could be there and you could have a max of 2 people with you to keep you company. There were no volunteers.

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Alice: I visualized the whole scene and it was hilarious! LOL

MelissaDallas

Send ‘em to the nursery to slobber on the new babies. See how that goes over. Heck, have the kids rock babies in the NICU. No problems with germs after all, huh

edj3

You guys are cracking me up I can't begin to imagine why anyone would think kids should volunteer in some of these places. They could go mow your yards and do some real good, amirite?

mara51506

My cancer centre does not even allow kids in chemotherapy suite. I get annoyed enough when an adult volunteer bugs me when I am watching a movie. I like to be left alone when I am there. Mind you, I am not being used to teach volunteers, just being offered a cookie but still

AliceBastable

I'd say someone should take the little dears to an animal shelter to learn empathy, but I like animals too much.

Tmh0921

As someone in healthcare I see so many HIPAA issues here with what the volunteer coordinator said...

However, on the topic of children in the infusion center; it shouldn’t be allowed for patient health and safety issues. Neither my oncologist or my infusion center allow children. There are clear signs posted prohibiting children for the “health and safety of the patients”

I have two children (16 & 11) and I would never dream of them visiting the infusion center, as a visitor or a volunteer

VLH

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I understand wanting to encourage kindness and empathy; however, I was neutropenic after 3 of my 4 AC infusions and wouldn't welcome extra people in the infusion room. I've heard many an adult leave the rest room without washing her hands. Still, I believe that, in general, children re less conscientious about hygiene and are in very close quarters at school and day care. That means more cooties. Surely, there are other opportunities.

Would printing "Please Do Not Disturb" on a sheet of paper cardstock and folding it to nest under your book or iPad help?

Lyn

Beesie

Librarian, from a practical standpoint, I think you should speak to whoever the volunteer coordinator reports to, or contact someone in a position of authority at the infusion center, and tell them about your experience and your discussion with the volunteer coordinator.

The infusion center's services should be focused on the patients, and clearly that's not happening here. Volunteers are there to assist the patients; yes, there should be a benefit to the volunteers as well, but that is secondary and if the benefit is not what the volunteers wanted or expected, they can leave. It's not about them, it's about the patient. That should be intuitively obvious to anyone, but obviously is not to the volunteer coordinator. The responses received here provide a good list of concerns to be raised. Other than the fact that the presence of children might make the process more difficult for the patients, there are very real and very serious health concerns - that is totally unacceptable and presents a legal liability.

It sounds as though the volunteer program at your infusion center needs a shake up, and a short, rational discussion or note with the right person can get that process started.

JCSLibrarian

Thanks to all of you for the advice. I will ponder a next step and see if I can find someone to speak with. My son works tangentially for a medical equipment company and he had to sign HIPAA paperwork. I wonder if these volunteers do? Early on in my treatments one of the volunteers was a woman I knew from work. It was a bit awkward, but we enjoyed catching up. I was concerned that she was spreading news of my diagnosis, but have no proof of that. I agree, the patient should always come first. There is a great deal that “living with cancer” has shown to be pretty crappy

ShetlandPony

Golly, the health and privacy issues here are huge. Not to mention the lack of focus on the patient’s needs. I hope you can move this up the chain at the hospital, JCSLibrarian. Put it in writing. I do think I like your idea of a patient being able to request a companion if they have no support from friends or family, but that companion should have to do training in health & safety, and in appropriate interactions.

jaycee49

Librarian, like others have said, you need to go over this coordinator's head. She is wrong for so many reasons. My center does not allow children, either. Little germ machines. I would also talk to your MO about your discomfort being asked about your prognosis, given your new dx. If you are still working on your own approach, you don't need it pushed in your face. Time to get bitchy.

Alice, I'd like to take you up on your offer to help with the Resting Bitch Face but look at my photo. I think I got it.

mara51506

I've got a pretty good resting bitch face myself. I always have had one, if I'm not smiling I look really pissed off. It was a PIA when I worked retail and people would tell me to smile constantly and I was not allowed to punch them in the face. It was against company policy. It is tough being told over and over to smile if I forgot to plaster one on. I was not miserable at my retail jobs either so was not looking sullen or anything. Just don't have a cheerful looking face when it is neutral. God help the person who tells me to smile nowadays, especially with my cancer dx. It's been a long time since that happened but you never know. My explosive filter is not always the best anymore since I am not required to be patient with customers of any sort.

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My face always seemed a little sad if I was not smiling. People used to ask me, does something bad happen to you? Now, after the dx, the chemo and the surgery, I have a melted candle face ☹

Wanderingneedle

I often enjoy having a resting bitch face when I’m thinking or concentrating. It often keeps people away and I can focus. I worked at the local high school in the career center and students would often make a wide arc around my desk (mine was in front) and go to the counselor. By the time they were seniors they came to me and the military reps (I’m a former Marine) always came to me first. I miss working with the kids but glad to be out of the workplace drama. I have enough at home

AliceBastable

Mara51506, Jaycee, and Wanderingneedle, I almost got fired from a public service job over my RBF. Yes, I wanted to punch also. But the RBF is a little different than the FBC (flatten bratty children). If you ever wasted time watching America's Top Model (guilty! probably why I got cancer 😁), you'd have heard that stupid "smize," smile-with-your-eyes. FBC has "frize," fry-them-with-your-eyes. Think Bela Lugosi's Dracula stare added to RBF. Use it wisely!

mara51506

I love the FBC frize fry them with your eyes. That is funny Alice!

Rosie24

Thinking of you, Lita. Hoping you’re doing ok

AliceBastable

I ran into something today that took all my self-restraint to not get REALLY, um, direct. I was on a forum for kidney cancer, and somebody with a screen name like BubbaMamie (husband and wife's names as one) wrote a post saying WE had surgery, WE were undergoing a particular treatment, WE were feeling so-and-so, WE will see Dr. X tomorrow. I know this has been discussed before, but DAMN. I had to click to get into their info because I had NO idea which of them was the patient. I really wanted to ask if they were a rare conjoined male/female.

One more time for those in the cheap seats: If you weren't personally diagnosed, and didn't have surgery/chemo/radiation/other treatments, just lay off the effing WE crap. It's offensive to everyone who DID go through those things, and it makes you and your partner look like co-dependent idiots.

Artista964

Um. Good thing you didn't post that. maybe they wanted to post it that way. Yes it's the pt but maybe the couple sees this as going through it together. Unless the pt complains about it, I don't see the problem. Some couples are conjoined so to speak.

edj3

AliceBastable, agreed. I find it annoying when hetero couples say WE are having a baby, It's more annoying and offensive when the couple uses that language about one of their diseases/surgeries/etc. I love my husband for a bazillion reasons, he is the best thing that ever happened to me but I don't have his thyroid issues and he does not have my two cancers.

mara51506

While I can understand the annoyance with the posting of WE, I agree with Rosabella on this one.

The people who support and love you do go through it with you. Not the same physical things but the emotional part. You never want to see someone suffering that you care about. It takes a toll through the sheer stress of the disease and same fear of death. The sadness and empathy also can be physically debilitating.

I was the patient with my own cancer but had to watch my mother decline over the space of a year. Before the cancer was dx, she was told it was age related, then she got pneumonia and the found cancer as well. We both went through things, myself taking care her She had both physical and emotional, mine was physical from the stress and sadness of watching a proud person lose her mobility, independence and ultimately her life. She also never stopped worrying for me either. She would ask repeatedly if I was all right in her sleep as I also have cancer. I was glad in a way that her passing set her free from suffering the cancer and worrying about me.

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Well, my mother has vascular dementia and "we" are certainly having a bad time with her illness, but I don't say: "today we had diarrhea and we made a mess in our bed". My father loves her with all his heart, but he said: "she made a mess, I cleaned up.

Would it be different if my mother had cancer?

exbrnxgrl

While I’m not wild about the use of “we” with respect to a very supportive partner, I do understand that this is important for some couples. It wouldn’t work fo me, but I can see that it really matters to some

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I guess they don't talk like this at their medical appointments...

JCSLibrarian

My DH asked me recently when “our” Oncologist appointment was. I corrected him as it was MY appointment that he was attending with me. I correct him when he says “she” and I am standing next to him. I prefer to be referred to by my name in that situation. I feel that is proper and respectful. I spoke to doctors frequently when my mother was dying and never once referred to her situation as “ours”. Family can (and should) show support in other ways.

Artista964

Bottom line, respect others whether you agree with the term or not. They are both dealing with a dreadful disease really. You don't know them. Maybe the english is bad. I know my parents sometimes throw in the wrong term. So what. I don't bother to correct them as they are approaching their elderly years. I can't imagine the hurt if OP had posted if they are conjoined. Wow. And on a cancer board! Have compassion. Everyone needs to deal with this dreadful disease in their own way. Everyone is different. Chill.

wrenn

When I was diagnosed my sister said “I can't believe this is happening to us". I corrected her.

What bothers me more on the “we" thing is a couple using the same email address. I am in a cancer group where we discuss private things and one member's email address is her husband's. The address is his name and every time I see it I know I am talking to him as well and in fact our meditation centre sends out group emails and he is included in the group mail out.

ETA that I don't really care if people use "we" or share emails but in the case of group privacy it bothers me. At retreat the woman shared about problems she was having with her husband and we all emailed when we got home but of course no one could bring up anything about what she had shared obviously.