STEAM ROOM FOR ANGER
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Jo, isn't it hard to be friends with these people? I would find it difficult. The wife is one of your closest friends so there's that. I'm watching a show on Amazon right now called "Spiral." It's a French crime drama. (The subtitles are HUGE which is so great.) In the course of investigations and prosecutions, they do things called "confrontations" (imagine that pronounced in French). The victims and criminals sit down and "talk." It's probably rather contentious. That's what I think you need. This guy needs to get straightened out. Runor's way would be one choice. Funny but I'm not sure she even SHE would really do that. (She might.) But seriously, the longer you let this situation continue, the more he will think that it is OK, WHICH IT IS NOT. He is a moron and someone needs to tell him that. He needs to explain why he thinks this behavior is acceptable. (I'd love to hear that.)
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Runor- thanks for for a great post. Also for a great laugh.
WC- to the point and well said
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Runor~ love you and your honesty always.
Bella~LOL at ass hat. And I agree.
I'm here to scream and yell about a wonderful close friend of mine who is entering hospice... LIKE WHAT THE FUCK. This is another beautiful good woman, wouldn't hurt a fly. But is strong as brick. Is beautiful like a butterfly, but will rip your head off and sting like a bee when she doesn't like something. I've grown to love her, I'm Damned mad. How on earth can we possibly continue to loose the ones we love. FUCK YOU CANCER!
(Edited to say I’m sorry mods, or to anyone else that may offend, I’m broken hearted gotta let it go or I’ll blow up)
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I was hoping it wasn’t Gracie you were referring to. I’m so sorry. 🤬 cancer. Never is fair!
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Hospice. Seriously. Hospice. I just went through it with my father. It just angers me that we are so helpless. My father lasted 7 months. In hospice. 💔
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What a weird new existence we are thrown into with our diagnosis.
I spent the day with my sister yesterday. Good day. I will always cherish the memory. But the cancer always seems to rear its ugly head. We were driving around and found ourselves in the same neighborhood as my old job. As we passed the parking lot, I was taken back in time to when I worked there and the precancer days. I remember parking my car early in the morning, walking into the employee entrance, and up the elevator to my department. Now the building is gone--company moved to another building and that one torn down-- and the parking lot is being overgrown with weeds. When I worked there never would I have thought that the day would come that I would be diagnosed with a terminal cancer. Looking back to those days working there, Yes it was not all happiness and rainbows, but it was nothing like now - the treatments, the doc appts, the fear, the anger.
Now, though, I do not take anything for granted. With my sister yesterday, I wanted to freeze time. I didn't want the day to end. We are close, but not close. I cannot cry on her shoulder. I go to doc appts by myself. And she doesn't like me to talk about the cancer or my feelings. But when we have a day of fun, like yesterday, we really enjoy being with each other. God, I wish I had more time on this Earth. I don't want it to end yet. I want more days like yesterday. I DON'T WANT THIS CANCER. THIS IS SOOOOO HARD.
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Hello all. I have a small rant about something that may be a bother to only me. Yesterday I spent 3.5 hrs at my infusion center hooked up to my particular poison. During that time three adult volunteers and a group of about 25 6th grade vacation Bible school children had to ask me if I needed anything. Not once, but numerous times. Keep in mind I go to this center once a week. I see the adult volunteers each week and always say I am fine. I bring my own snacks that are in plain view. I bring my own blanket also in plain view. And have a book and IPad in my lap. My husband accompanies me so I am not in need of entertainment. The VBS kids were a new twist. They were in small groups of three that had water bottles and apples. Each group came by asking if we wanted any. I felt they needed more adult supervision. I asked a nurse if things weren’t a bit volunteer heavy and she rolled her eyes in agreement.
I am not against volunteers. I wish people would learn to leave me alone to endure the infusion. They are not adding anything to the experience. In an attempt to engage me in conversation, one of the adult volunteers asked when I could ring the bell. My answer was “never” as I am metastatic. She seemed confused about that, but left fairly quickly after. I have been a volunteer. I have supervised volunteers. Being able to read signals and understanding when a person does not want to engage are very important.
Hope I have not offended anyone. Just had to get that out.
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Well I've just found out I've been given the wrong implants and I'm very upset about this because I expressed I didn't want this kind multiple times and my PS assured me he doesn't use this kind multiple times, yet somehow something I did not want in my body ended up in my body.
These types of implants are the ones associated with that rare type of cancer. One of the major reasons I had a BMX was because I didn't want to have to live with the worry of getting cancer in my breasts again, so these implants defeat that purpose of the BMX. Take stuff that can become cancerous out, put things that can cause cancer in it's place? I can't live with that.
How does this even happen?
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Librarian, that would have driven me bonkers. Children are not allowed at my infusion center so I don't think the kids thing would happen. I would not have been that nice and subtle about telling a nurse. I would be yelling, "get them out of my face!!" I wouldn't mind talking to adults if they were there to learn. Many people don't know what Metastatic means. I would calmly explain that it means terminal. That word they understand. Then a real conversation might be possible with the right person.
If they need activities for VBS kids, find something else. I will tell my onc nurse that story next time. She will be entertained/appalled.
WC3, that is just so amazing and outrageous, I can't even say. Ridiculously bad mistake. Will anyone take responsibility? Be accountable? Make them redo the surgery? That's puts the whole mess on you. I personally, would not redo the surgery. What a screw up.
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jaycee:
I was mistaken. It was a paperwork mix up. Right implants, wrong paperwork.
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What a relief. So glad. Easier to replace paperwork than implants.
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JCSLibrarian,
I do NOT use the word "metastatic" when describing my cancer to people anymore. It's frustrating because most of them just don't understand what that term means, and I'm not about to spend 5-10 mins each time explaining what it entails.
Now I just use, "I can't ever ring the bell because I have Stage IV TERMINAL cancer throughout my entire body. There is no cure; we can only use chemo to keep it in check." Takes less than 15 seconds to say that.
L
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Lita57: I go back and forth about how to describe my diagnosis. I personally dislike the word “terminal” as I have not accepted that part of the diagnosis. I also feel that term is almost like asking for sympathy. I do use stage IV and explain about the cancer being in other organs. The volunteers at the infusion center are cancer “survivors”, but I thought they would know what metastatic means. Guess not.
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Those volunteers can be like an over-attentive waiter who interrupts your conversation, I felt bad saying I didn’t need anything so next time they came around I accepted some cookies (along with their good intentions) even though I was not planning to eat junk food just then.
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They're also annoying and quite invasive they who come to pray for you in front of everybody
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25 children? Do they care that you could catch something? Isn’t that breaking the rules?
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It’s about our voice too re volunteers. Make it heard if you don’t want children volunteering in hospital, but explain why and what they could do instead! Not their fault, they and their adults think they are doing good. We need to educate them otherwise
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I only get reclast infusions, but it bothers me there is no privacy. There is a long long row of chairs along the wall right room outside the nurses station where everyone can see you as they go to the exam rooms. I guess they do that for safety reasons.
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I've never seen children volunteers at my hospital. That would drive me insane. I know there are some that knit caps for the infusion center and put together kits of essentials but they aren't there hanging out. Who wants someone in their face? A couple times fine to check on me but if I need something I'll ask. I don't blame the kids and would be kind to them but my review after that session wouldn't be great..
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I believe that cancer patiens are sometimes being used to teach children to be supportive. Otherwise I don't understand children presence in oncological centers. Sorry if I hurt somebody feelings but a volunteer has to be helpful, not just good intentioned
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yndorian- I'm in complete agreement.
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In my infusion center they are being supportive by knitting caps and the kits they put together. What should be taught as well is to respect privacy and space. Teach them that being in our face is not wanted. A supervisor should be guiding and teaching them. It's not a field trip to the zoo to pet and feed the animals.
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I totally agree with all those that have posted. I will attempt to find out who I can ask about volunteers at the infusion center. I personally want to get the treatment over with as quickly and seamlessly as possible. The nurses are there to make that possible. The volunteers are a bother. I feel I have to be polite and chat when I do not want to. Having cancer is bad enough. Being stuck in a recliner having an inane conversation with a stranger is just not necessary
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I have seen people get on this site because a wife or mother has been diagnosed with BC. That is fine but it angers me to see them being critical of their spouse or mother. Until YOU have been diagnosed with BC you can't criticize how they choose to handle their situation. I think people are looking for others to judge them I won't do it.
Sick and tired of hearing about their complaints that they didn't take care of themselves or the didn't act soon enough. Why can't they just stop it and be supportive.
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Meow, yeah, that bothers me too. Since we are venting, on the topic of people who are here because of a family member, my vent is when they use the words "we" or "our" to talk about the treatment.
"We have surgery in 4 days" Really, are you both having surgery?
"Our oncologist said that..." You and your family member have the same oncologist? What a coincidence.
"We are trying to decide between..." As a family member you might be participating and assisting with the decision, but the decision rests with the patient and the patient should not feel pressured to do what you as a family member feels is right.
"We are experiencing a new side effect... " Interesting that you both have this happening. Sympathetic pains, perhaps?
Support is important. I appreciate there is value in approaching this as a team. Knowing that a spouse/child/parent/sibling is right there with you is encouraging and can be a source of strength (especially after reading some of the posts on this site about unsupportive family members). But the family member is not the person with cancer. There is no "We" when it comes to undergoing surgery or radiation or chemo or endocrine therapy. "We" don't experience the pain. "We" don't experience nausea and neuropathy. Only the patient does and I find it terribly disrespectful when a family member says "we" in this context. I also find it inappropriate and rather clueless for someone who is supporting a breast cancer patient to talk as though they are the patient when posting on this site to people who actually are breast cancer patients.
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beesie- I recall on one of these threads a gentleman was posting about his wife having reoccurrence of cancer. He wanted feedback from other women who have cancer because he wanted to force his wife to have chemo. His wife was totally against having chemo. He was very angry at her refusal to have chemo. His plan was to share the posts with his wife in the hope she would be convinced to accept chemo. He frequently use the word we and several women for very angry at his use of the word we. His response was every pain she feels I also feel that pain and I am the one who is her primary caregiver. I could appreciate he was coming from a place of love but you cannot force a person to choose treatment. No matter how much you love your spouse and you are with them every step of the way. The ultimate choice is always with the person who has the cancer.
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I've always had this feeling when I read a spouse or whoever posting on behalf of the cancer patient is that the cancer patient is missing out on the true value of being here. To me, the true value is the connection we feel with each other. That connection can only be made by reading (not being read to) other's posts. But more importantly, writing what you are feeling and knowing another person with cancer will read what you wrote and say, "oh, yeah, that's what I feel, too." That's how that deep connection is made and that is the most important benefit of BCO. We are miles apart but still so close together.
Aren't there threads for caregivers? Once in a while, not often, I get the feeling that a spouse is the controlling type and would be in other aspects of the patient's life, too. That makes me sad for them. The patient and the spouse but mostly the patient. I read post once by a spouse saying, "I want my wife on this treatment." Like they had control where they obviously don't or shouldn't.
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Bessie, the Royal We. One thing to use it with small children when you are in a position of stewardship over them (even then it's questionable although I have been guilty of it myself) but to use it in most contexts with another adult of equal social standing is to imply a condescension that is inappropriate and an authority of ownership that is just plain wrong.
As others have pointed out there are those partners who come here scared and seeking support, maybe stories of hope when they are feeling utterly hopeless and powerless to stop the loss of their mate. BUt there are others who come here seeking collusion, and that is a whole other ballgame. I have a feeling that those people edit what they read here to suit their purposes, which is NOT truthful to the ill partner. It is manipulation of the information and dishonest.
I am going to go We on my husband now.
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I get the spouses are scared but they aren’t the patient. No one can really relate to what the patient is truly feeling except those with BC.
I agree you can’t and shouldn’t try to force someone to have a treatment. Not their call anyway.
I thought it was sweet that husbands post on our website about the concerns for their wives and yes it would be better if we heard it straight from the horses mouth. This website has been a lifeline for me from the getgo. It’s a place I can go and compare notes and seek advice from people who can truly relate.
Idk why their wives aren’t posting instead but I guess not everyone wants to air their questions and concerns on a website.
Diane
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A lot of parents don't get their kids vaccinated anymore, and that scares the b'jesus out of me. They could be carrying just about anything. I can't get booster shots anymore because some of them contain "live viruses" which my MO said could kill me.
Keep children out of infusion suites. They can go elsewhere. Teach them to do blood pressure checks while wearing masks.
L0
