STEAM ROOM FOR ANGER
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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****
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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.
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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.
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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?
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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. 😀
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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!!
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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.
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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!
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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.
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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.
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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.
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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.
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alice-What is the name of the publication in which the article was published?
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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.
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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.
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I could take a sudden fatal hearth atack. While I'm dancing polka, like Runor said0 -
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!
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I fear alzheimer's too. I do have short term memory loss at times and comprehension. I often forget why I got up and my mind isn't distracted. It forms slowly. It's not until stage 3 or 4 of 7 that a firm dx is made. I've studied up on it. Friends mom has it, and I'm going through it with my former boss. What sent her to the neurologist is asking a question then still talking but on another subject, asks it again completely forgetting she asked it 15 min ago....frequently.
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My mother has vascular dementia. She is becoming a sweet child, always talking about her childhood. She remembers me as a baby but she completely lost all her memories about our last 20/25 years together. A few days ago she asked why I had never visited her again. That broke my heart. I answered her: Mom, we saw each other almost every day, but you just don't remember it. It is so sad, I feel I lost my mother already. This new person is a sweet old ladie with whom you have to start all over again every day.
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My friends mom is really mean. She was like that since forever. So she tells her daughter I hope you die, you're evil, etc. Sometimes she's nice but not often. They say the personality you go in with becomes enhanced.
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I think aggression is characteristic of dementia. My mother's doc asks at each appointment if she is becoming aggressive. I hope that does not happens untill some more years.
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My aunt never got mean (that I know of), but she became something of an exhibitionist, answering the door topless, for instance. She had a good body for someone in her 90s, but I think the nudity wasn't about vanity.
Jo6359, I can't find the link to the research paper my niece co-authored. It must have been somewhere besides FB.
I'm not a nice person. I love that my niece does research for Alzheimer's, and also posts fundraising for the research. I'm glad that she is incredibly supportive of a close friend with ovarian cancer, and organizes and attends many fundraisers for both her friend, and awareness/research. But I also wish that once, just once, she would have asked how I was doing last year when I was having body parts cut off or dug out or zapped.
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my aunt's husband was always mellow and through dementia too. He got frustrated but not bad. I think it's the individual.
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I have been having a rough time of late and need people to talk me down.
I live alone, never did make any really close friends and not much family. I talked about having to let go of younger brother so he is gone, older brother and family still around.
My older brother and his family are the only family I have in my life. My mother died in January after lung cancer. I am largely moving beyond the grief as she spent her last days losing mobility and independence while at the same time, she worried about me. I was glad she was finally at rest after suffering and no longer having to worry about me.
My problem nowadays is because I never cultivated friendships beyond casual acquaintances, I have nobody to really share concerns or chat about things with like I did with her. Things I accomplish that I am proud of such as purchasing a treadmill and being able to build my strength back slowly, adjusting my diet to get rid of some nasty digestive issues I had, are not really priorities for them. When they do come to visit, it feels like a chore they are doing. I understand that they went above and beyond for many months helping me move, get real estate agent, selling home, finding apartment etc. I also gave them a large sum of money for doing all of this.
My main issue is that I know they cannot possibly be around all the time as I know they all have their own lives, I just am having trouble adjusting to being alone and I am not always well enough to get out. I hesitate to call because messages I have sent go unanswered and also I KNOW they need to relax. Also, we don't typically talk on the phone or check in and if I do call, that usually means I am sick.
The other issue is that because I am on disability and lead a quiet life, we really have run out of things to talk about. When I speak, there is not much that holds their interest and they continue their conversations with each other. I feel like I am now just a chore to get out of the way. I need to help myself deal with life as it is now since Mom is gone and I have to look after myself. Just feeling sad, lonely and sorry for myself and needed some people to share this with. I don't want to address it with them as it will come across as demanding their time and they did so much. Also can't afford to lose only family I have left.
Signed feeling sad, lonely and isolated. Thanks for reading. I know I won't always feel this way, I am just tired of feeling isolated and tired of not having anything to say that they would find interesting.
It also makes me wonder why I keep doing these treatments to stay alive without anybody to share it with. There are so many other people who actually deserve my good fortune with my years of decent physical condition. I feel like good fortune has been wasted on me who does not have anyone who needs me. So many of our sisters and brothers have lost their lives who have had families and friends who need them. I feel like people forgot that though I have done better than a lot of people in my condition, people have forgotten my time is limited and I don't feel people really care about that anymore. I am not sure this is true or just my sad mind, but that is how I feel. I am told I will probably go on for years. I keep reminding that I will die, I will decline and pass away.
I just question the folly of sticking around longer for largely a solitary life. No one to share it with anymore. Wish I could give my health to someone else who has more to live for, more people who need them.
I hope I feel better tomorrow, getting tired of feeling sad and hopeless and suffering SE from the drugs I am on. I will talk with my cancer centre and ask for more help with the social worker. I
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mara- I'm so sorry to hear you're going through so many things alone with feelings of isolation from your family. The loss of your mother must have been devastating. Even though you recognized she was losing her mobility prior to dying she seemed to be your major source of support and sharing. You did mention something in your post which struck home. I believe you stated when you called your family it's usually because you're sick. Have you tried calling them just to say hello and have a great day. Who knows? Maybe if you do that enough they'll start to reciprocate. You might have already tried these things without any success. Do you feel as if everything is contingent upon you making the effort to maintain any semblance of a relationship with your family? It's extremely difficult if not almost impossible to change another person's Behavior. Based on everything you have said, it's important to you to maintain some type of relationship with your family. Have you ever tried sitting down with them and sharing your feelings of isolation and sadness? Or try to find something you all still have in common? It seems as if you are doing all the work but maybe you're the one who wants the relationship the most and are willing to work at it. It can be very tough even when you have a strong support system . Have you considered signing up with a mentor through a local Cancer Association group? For many people it is difficult to cultivate interests when you are on disability and stuck at home. What are things you enjoy doing? Are any of these things you could do with a support group or a social club? I apologize for throwing so many questions that you. Keep us posted on what's happening in your life.
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I do have a wonderful service through hospice for a companion volunteer. In my case, that service is a person who I can talk to, we are like a couple of good friends and we usually walk around the mall, get coffee and shop or do errands. I enjoy the time out of the house. Unfortunately, you cannot maintain a friendship outside of the volunteer hours as this kind of service would put too much emotional burden on the volunteers and they need to unplug from it themselves.
I plan to go on my own back to my cancer clinic next time I have an appointment, I am presently on a MO ordered chemo holiday to rebuild strength. I have been using my treadmill religiously and am starting to feel stronger.
I don't always feel this way and these sad days are getting fewer and farther between. I will discuss with the family next time I see them that I don't want to only visit when they think I need to do a chore.
Mentally, I think sometimes unpacking my inner baggage here before just spewing sadness on people helps me put things into perspective too. I think the tears are my body's stress coping mechanism. I have fewer of these spells now and they are shorter. Today's spell was after a long day at the cancer clinic for my 3 month CT scan to make sure I am still NED from neck down. Having people here who can understand what I am going through helps too. It is sometimes good just to have a kind person respond to and validate my feelings.
When clear headed, my older brother has done NOTHING wrong, he has to live his own life too after months of looking after first my mother and then me. I know his family needs time to decompress as they literally did EVERYTHING to get me packed, moved out of the house, into an apartment, staging of house and getting it sold. I did not have to do anything. That's why I don't burden them and sometimes just need to get the thoights out that I believe are masking my grief for losing my mother and to a lesser extent my younger brother, nephew and greatnephew. All of those feel like a death and it is a lot to deal with.
Best thing I can do is work through feelings, sleep, exercise to stay strong AND to modulate my mood so these sad dark times are fewer. Would help me think clearly and see more clearly how lucky I actually am compared to a lot of people. I guess the tears are cathartic and I need to work through thoughts before picking up the phone.
Thanks for responding, if I don't start having fewer depressive feelings, I will definitely call my cancer centre, we do have good social workers. I do feel a connection here, both when I am seeking help and hopefully at times when I can help others with my experience.
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mara- I am so glad you have a volunteer to spend a few hours a week with and to share your feelings. You defend your brother for doing nothing wrong. You haven't done anything wrong either. I agree with you being able to vent and spew on these threads seems to help and prepare oneself when dealing with difficult situations or people. Vent and rant all you want we are here listening and willing to support you.
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Thanks jo6359. I agree, the volunteer is wonderful, we do just chat like old friends and have a really good time. I should also add, I don't spend all my days at home. I do go places for myself that I enjoy. Saw the new SpiderMan movie which was great. I don't mind going to movies myself as I REALLY enjoy my popcorn as well. It is lots of fun.
I think just organizing thoughts helps me realize that I am not so much depressed as just still grieving. It helps me understand that some of my thoughts are not real so much as a byproduct of a lot of upheaval. I spend more days than not enjoying myself, my treadmill (love walking but outdoors is too hot and humid) and staying strong as I can for as long as I can. Also, instead of just dumping my thoughts on my brother, it is better to separate fact from fiction that I am somewhat creating about being a chore. I largely think this is my mind's own invention when under stress. If I was not important to them, they would not have helped me with all the packing, putting everything together etc at the expense of their own lives. They are just needing a break. It helps me not burden my situation on them constantly.
I am getting better at reaching out for professional help first and I am glad that these thoughts are fewer and far between as stated above. I went through similar issues after whole brain radiation. I spent months in a dark place and it was hard to know which issue to blame. Steroids were a part of it but the inflamed brain can also affect some for a long time after. I started walking just to try to feel better and that helped me get strong back from 2017 and 2018 which is why I purchased the treadmill. I wanted that walking ability to fortify me now while I still can and it is largely starting to work on my mind and body which lost a lot when looking after my mom.
I will look forward to facing my emotional challenges and become an stronger, more determined person. These are the kind of thoughts that I think are more representative of who I have become. They just sometimes get hidden behind my occasional dark stormy times. Thanks again jo for your good advice and wise words. You are so very kind and have helped me a lot.
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I'm having major memory issues now, too. When it gets really frustrating, I tell myself, "Take a breath, slow down and find your words. They will come eventually."
L
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Yes to everything Wrenn said, and so eloquently.
I've been blaming my mushy, scrambled brain on an overdose of anesthesia last year. And my tendency to let myself get dehydrated, which I REALLY need to not do, being a unikidney person now. I tried to blame my recent anger outbursts and word stupidity and increased klutziness on Tamoxifen, but a one-month break didn't change anything. I guess I'll have to eventually ask my PCP if I have a problem, but I'm willing to procrastinate as long as I can - or as long as my family will put up with my Jeckyll and Hyde days.
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