STEAM ROOM FOR ANGER
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Lita: I wish you to have good news to share next monday. HUGS
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Lita best wishes for Monday.
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Lita, Sorry you had disturbing findings to investigate. Hoping for the best for you anyway.
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Lita, I too am hoping the best for you as well. I will keep you in my thoughts.
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Lita,
Sending you hugs. I hope all turns out ok on your PET.
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lita- sending warm thoughts in your direction. Please keep us posted as soon as you know something on Monday.
I use my real name on the message boards.
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Lita, hope for news that isn't too depressing and between my rudimentary graps of Spanish and Portuguese, I think I got the gyst of what you were saying. And no, you will not be using that language in Heaven, unless you're sitting with the bad kids.
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Lita, joining in on the wishes/ hopes that your PET results are better than any of us hope for!
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As I write this my sister is at the hospital prepping to have a Double mastectomy and Salpingo-Oophorectomy at 8:15 am Pacific time. I'm not afraid of the actual surgery she must endure, I'm concerned about her emotional well-being after the surgery and the first time she looks in the mirror after the bandages are off. I've relived that scene in my mind so many times in my head and can't get a grip on it. I've also looked a photos on the net.
I'm so mad that she has to go through this and mad that I can't be with her today (a friend is staying with her for two weeks until I arrive on the 19th and stay for three weeks!) I'm also mad that I live 3000 miles away from her!!
I think of all the breast cancer patients who have gone through similar surgeries. You're so courageous. Countless breast cancer patients have emotionally survived and those who have shared their stories in this forum are an inspiration to me.
Still, I'm mad and need to get a handle on my anger.
I shared this with my sister last night:
"You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give." Eleanor Roosevelt
"Courage is being scared to death... and saddling up anyway." John Wayne
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Viewfinder: I'm so sorry that your sister has to go through all that! So hard to you that cannot be with her right now! Fucking cancer! Your anger is justifyed. I send you hugs and my better wishes to your sister. I can absolute related myself with that John Wayne phrase
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viewfinder- I'm so sorry your sister has to go through all that. With you being a loving sister I can appreciate your anger and frustration at not being able to be by her side. I'm sure she knows you're with her emotionally. Both of you will find the strength you need. We say it all the time. Cancer Sucks. May your sister find the emotional strength to deal with the journey ahead.
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Viewfinder,
I'm sorry to hear your sister has to go through that. I pray God gives you and your sister the strength you need to make it through this. It's ok to feel angry, my sisters are miles away also. I still find comfort knowing they are always here for me.
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Viewfinder, I am also sorry you are not able to be with your sister right away. I am thinking of you both.
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Viewfinder, thinking about your sister and wishing her all the best. Yup, breast cancer stinks, doesn't it?
Lita, I hope that your PET Scan provides only reassuring good news!
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A week or so ago I ranted about the abundance of adult volunteers and groups of child volunteers at my infusion center. Today I called the volunteer coordinator to ask questions and let her know my concerns. Mainly she said it was my responsibility to alert the volunteers that I did not want a “visit” from them. I do not understand why it is the patient’s responsibility to direct the volunteer. Wouldn’t it make more sense to match a volunteer with a person that has requested a “visit” while at the infusion center These volunteers wander around the infusion room until they find someone that makes eye contact, then the questions start. When I asked the volunteer coordinator if it was ok for someone to ask patients when their treatments would end, she said sure. It was a conversation starter. A way to show empathy with the patient. I asked her why children were allowed in a medical setting as they could have numerous unknown germs. Her response was that children have no more germs than adults. Really?! This woman talked about how the children needed to learn empathy, but she showed me none during our conversation. Bottom line is that I need to overcome my Southern instinct of being polite and tell people over and over to F___ off.
I worked as the manager of a branch of our local public library and had to receive calls like this often. People would let me know how they felt marginalized, abused, talked down to, etc. I would like to believe I listened, cared and worked with them to find a solution. I hope I never made it the customers’s responsibility to work through a system they did not understand.
Cancer is a bitch and being treated like you do not matter doesn’t help. Good news is I am getting a break from chemo and will not be going back there for a month!
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JCSLibrarian, they do use sick people to teach the children to be supportive. It's so annoying! so the patient must take care not to make eye contact ... It seems a kind of sect!
I hope that woman has been clear that you do not need that kind of "empathy" and leave you alone during your next infusions. Hugs
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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. 😈
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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.
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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
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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
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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?0 -
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
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I'd say someone should take the little dears to an animal shelter to learn empathy, but I like animals too much.
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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
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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
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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.
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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
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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.
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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.
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