STEAM ROOM FOR ANGER
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noni, you aren’t alone. I’m sorry you feel as if your posts go unnoticed; I feel that way, too. I try not to take it personally, but it sure feels personal, right?
I was a nurse at CTCA and I can vouch that as cheesy as the commercials make it sound, they truly do care about the patients. They are a privately owned, for profit company though. Unfortunately, the mindset that the “big dogs” have and the expectations they’ve given most of the patients has caused a great deal of emotional and physical stress and strain on the staff. All patients are important, but no patient is the only patient...if that makes sense. I left because of the demands put on me as a nurse by the patients... and I have stage 4 breast cancer! But the staff is phenomenal. Just my two cents.
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Not angry - just tired and want to sleep. Got a nap today. Thankful for that, passing out is a good thing. Cough is pissing me off though. Bronch Monday, lung biopsy, GI, liver biopsy. Going to get to bottom of this.
Swess - I checked back ten pages and couldn't find posts on here for you or noni so maybe you are thinking you wrote on a different forum but it ended up here.
i feel the same way - I am more vocal, you can see from threads I frequent, always a story or a bitch fest. I used to feel overlooked but then when I clammed up I did no favour to me or others. There are readers who never speak. But we all identify. I hope you do get comments and help when you need it though. Sometimes if I have a comment or question I have had to post three times.
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Hello lovelies,
The good news, finally out of hospital after 10 days. I had 8 litres of ascites drained, and 2 litres from a plural effusion. My left lung on the ultrasound looked like an index finger flapping in the breeze, the rest was black (fluid). Needed a transfusion of platelets during each procedure, as mine are almost non existent.
My first day was a nightmare, 8 attempts at a cannula, thought they were successful on the last try (the last 3 attempts being U/S guided). Went for a CT scan and contrast extravasation, all the contrast fluid leaked into my arm. Well isn't that just more fu*%ing painful than you would imagine. My arm swelled to 5cm larger than normal, doesn't sound like much, but it hurts like the bejeesus.
Had to wait a few days before we could try that again. My MO turned up with a Dr who has a 100% success rate of getting cannula's in, first time every time, and he succeeded, YAY!.
Only been out for a couple of hours, need a nap. I will catch up with all your news soon.
Hugs.
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Glad you're better, Freya.
What a bloody ordeal!
The onco nurse blew out two of my veins during my last infusion...but that's NOTHING compared to what you had to go thru.
No port for me until results from next brain scan. If there's serious progression with my 20+ mets, they will move me on to hospice. I'm okay with that. If I'm doing better or at least somewhat stable, then they will install a port.
I will ask about the newly approved Abemaciclib, but don't know if it will be that effective as my 2 biggest tumors are over 4 cms. This new stuff may work on smaller lesions, and I need to research into seeing if it helps at all with leptomeningeal involvement.
L
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Freya - I was looking at your profile and you hadn't been around for 10 days and now we know why. That is a lot of doctoring and hassle. But you are better. Did they put in a drain for main ascites? And now you have to watch for lymphedema forever in the arm.
Well Hubby did it again. In his effort to take care of us and learning to follow directions he has once again fed up my craving for a certain comfort food. Chicken and noodle soup. I know, he's a good guy and I am fortunate to have him in my corner. And I am an ungrateful bitch sometimes. But again, he does not hear or listen or communicate. Caramelize onions in butter and coconut oil. Add chicken broth and equal water. Heat to boil. Add noodles. Til done. Stir in chicken already cooked. Add 2 tablespoons butter to make broth rich. Season w celtic sea salt, little garlic powder..... and serve. He used the boxes we got at store today instead of the ones in cabinet that I told him where they were and instead he used BUTTERNUT SQUASH SOUP w garlic and parsley instead of chicken broth. So I had him add a box of broth. Tomorrow we will add the other box of broth and make some spelt / millet flour dumplings to cook in broth.
New rule for the kitchen, do not open anything or add anything until showing them to me first.
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Is it ok to rant here for someone else? Freya, are you kidding me? Did the first guy just need some practice? WHY didn't MO show up with the good guy FIRST? Why put you through all that when he had that good guy in his back pocket? These are all questions, I know, but I have no answers.
Bluebird, the soup with the butternut squash added actually sounds interesting. I may try that unless you say it was awful.
OK, one rant for myself. My MO says some incredibly hurtful things to me. He is the best MO in town so I keep him. Just an example: when I took DH with me to an appointment because I knew from the patient portal that he was going to tell me I was stage IV, he looked at DH and said, "most patients breeze through the chemo she was on." BREEZE??? He was saying this because I only made it through two rounds of TCH so I guess it was my fault I am stage IV. Was that statement supposed to make him feel better or us feel worse? I know the answer to that one. It made us feel horrible and sad and depressed. Anyone who has been through chemo knows that the word "breeze" can not be used to describe any part of it.
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Jay- what an unprofessional thing for an MO to say! Jerk!!!
Sometimes I see the NP and twice she wanted to talk about me dying. Was horrible. Hubby said he would stop her next time she does that.
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Janet - The soup is "interesting" like something the real chefs would throw together on a 15 min contest on Food Network. Today decided to let it be a creamy mushroom chicken soup instead of adding dumplings. Still another box of chicken broth is needed. I told Hubby I told on him.
Janet - in considering chemo to weather then it is like a mudslide, some slip down the outside layer and some get buried. Either way, a real downer. Some doctors just don't think at all.
I had 4 specialists appts in 3 days last week. RO first. I gave him a rough time of it w questions and needing answers. So I went into pulmonologist later that day. Sitting and waiting, Hubby aasks, are you going to piss him off too? I said the RO really did handle that well, he was not defensive or taking it personal at all. Just helped us figure out the way to go. So I warned the pulm who I have been to 5x and who did a bronch and pulled sunflower seed out of my lung, aspirated due to scleroderma, and I warned him I had been hard on RO and I had some hard questions to ask him now and to please not tak offense but I needed to know. I got out something about how I would have appreciated to know what the outcome could be.............. and he interrupted me and was offensive and a jerk, he said that no one can tell what chemo and rads are going to accomplish for us and ............ I interrupted him and said don't take offense to what I am saying if especially you do not even know what I want to say. And I finished - that I would have appreciated to know the bronchial tube to right lung was going to remain severely compressed even after radiation so I would know there could be a cough from that like the RO just told me. I am saying I would have been back here a lot sooner. Anyhoot more of that fun and leaving his office w not one ? answered and so he is fired. Specialists are like fertilizer in my path to get somewhere. So done messing around w these high paid inefficient ones.
I wish we could contact our insurance and tell them don't pay the bill for ________________ because this did or did not happen. Give control to the patients, vote to the patients.
Dianarose, the NP needs to get real, if we are dying we already know it without any editorial from them.
Famous last words from my beloved oncologist who went to Alaska and left me - he was often wrong and his team sucked - but I love him still. He said to me, the good news is this cancer is not killing you. I have been stage iv from beginning and I am still here. Partly because he believed in my system to get thus far. He worked with me. I may go to Alaska for several months a year starting next Spring. Just to get on what he is learning about new tx and complementary therapies from the other doctor there.
LITA - Good to see you. Your veins are tired aren't they. Mine won't give up much and I just started chemo, think it is the scleroderma maybe. The blood started giving it up well before Xeloda. The onc has Abemaciclib in the back pocket. I haven't read anything about it yet. Did you tell us, can you revisit Ibrance? But it seems you never were on it. Do you have your status updated?
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My idea for today is that I think to get certified as an oncologist, you have to go through at least a week of simulated chemo. Some drug/food/supplement combo that would make them feel like they had chemo. I'm liking this idea more as the hours pass. My MO totally dismisses all talk of side effects. He basically thinks they don't exist or you cause them yourself. Anytime I mention a drug causing a side effect, he promptly says, "that xxx (whatever drug) doesn't cause that (whatever side effect)." He must have all his patients trained not to mention side effects. Thus the "breeze" comment. He actually told me that hormonals don't cause UTIs. I was on Tamoxifen and was having one UTI after another. About once a month for over a year. My gyn agreed with me but declined to speak to him about it. He has her trained, too.
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I was so confused for a bit. I wrote the soup story on here but had copied it and posted to Insomniacs. Then realized I did not cut. So I came back and cut. But it is still here. Oh well. Sorry for the repeat on two threads.
Janet - that is the best idea. MOs are the boss, aren't they. I guess considered the big dogs on the field.
I had an SE on Faslodex injections where sometimes after tx I would get a raging fever nd symptoms of H1N1. then I would sleep and it would pass. But when I called onc team they told me to go to GP that I must be ill. One day a nurse in infusion found me at the desk after injection. She said to me that the info on drug did include flu like symptoms and fever and cough. And she gave me the paperwork highlighted. And she told me that if my SE existed then it was real. And she was never seen by me again. Vanished from the team. I think she had heard enough.
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i have never been on Ibrance...just Xeloda and Taxol
L
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Jaycee, wow, just wow. What on earth is wrong with some people? I cannot believe your MO. Perhaps he is one of those genius types born with a huge brain for learning, but a small shrivelled cat shit for interpersonal relations. There are literally those types who are brilliant in their chosen field and 100% FAILS at every other aspect of their lives. Maybe this guys' wife thinks he's an asshole too, but hey, the brilliant part of him pays for the Rolls Royce so you takes your poison.... I am sorry you have to listen to him though because his words are like having a glass of cold water flung in your face.
Freya, my god. Reading your post of a few days back is horrifying and I am so sorry that you, that any of us, are poked and prodded and HURT like we are. I hope the pain goes away and you have some time of feeling better. Hugz.
Bluebird... you need to start a Chef Husband blog!
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I actually had a category just on him in my blog. But it was too often about driving and I deleted most of it. These are stories to add when I put them back later. The stories I could tell. It could be fun to live w a man who is really nice and cute but cannot hear or remember or even listen. But I am not a saint and have an ill sense of humour these days. The other day I told him he was being an a*#hole and he turned around and smiled, "Did you say you want me to peel you an apple?" Now did he hear me? Or did he not? LOL
Hubby. looking at an eagle's nest.
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This might be more of a whine than a rant. Forgive me for showing up with a pity party but I need to let this out somewhere. Diagnosed April. Had hospital stay in May thanks to a high fever. Not sure how I survived the "care" I received from the night and weekend staff. My mother in law died while was in the hospital. I could only attend the burial because I was so weak. Next few months I take breaks from Ibrance, drop the dose. Do everything I can think of. But, I have head 4 sinus infections and one UTI. Discovered a met in my skull so I just complete 10 days of radiation surgery. During that time my mother died. Supposed to restart 75 mgs Ibrance this week but my immune system tanked. I should be feeling better right. Nope, I have infected eyelids and developed a fever today. Every muscle and joint aches. Also, my father is 93 and not doing well. I have done almost nothing but be sick and visit doctors. This isn't living with cancer. This is slow effing death. Oh, and my sisters started fighting with each other about Mom's jewelry. Before she was even buried !!!!! And during the viewing my brother in law started telling who I should talk to because he didn't want to talk to them. AND one of my sisters told me I should introduce her to each person I spoke to and tell them she had laryngitis ! Sister got a cold stare. Brother in law got smacked.
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Good for you, JVF. Nothing brings out true family feelings like death and funerals. Buzzards circling the entrails, that's for sure.
L
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JFV- that's terrible. Hubby and I tried to do our will so there would not be fighting when we die. Between us we have nine kids. We put the 18 year old on the deed to the house so there can't be any fighting over that. All the others have homes and spouses. The one thing we have to change is that he also keeps the contents of the house. Don't want them all to fight over tv's and furniture . The big stuff can be sold and divided. It's crazy but we felt we needed to do this.
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JFV - I hear you - we had a wonderful time of it when our grandmother died. With both our parents, family did fine though. Lucky for us. But what jumps out at me is the brain met and Ibrance. Did you get changed to a different tx? Did the Ibrance work on what it was supposed to and that arena is no evidence of active disease. But there is now a brain met? Have you had full body PET CT?
Pity party anytime, it's what this thread is for. Rants and pity parties.
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I know the will/power of attorney dance all too well. Did it Monday with my DH by my side. He was and is amazing. IT was hard. To see my name and basically my life come down to a piece of paper was mind blowing. The attorney we saw was very honest and real. She drew diagrams for us to understand the probate part of a will and the medical bills aspect of it all. I don't want my family being held responsible for my medical bills that are astronomically high. No one can live with that hanging over your heads. Not ok in my book, so she was very helpful with advice to make sure that doesn't happen to my DH or kids. It was a surreal thing to decide if I wanted a feeding tube. Nope ✅, do you want to be kept alive by artificial means? Nope ✅. I felt like I was taking a test or something. Sign here date here. Good luck with your disease, NEXT........it all boils down to feeling like a number. Cancer just sucks ass. I have no pain, physically I feel great. It's the mental torture I could do without. Arrgggh.
My other siblings were already after my mom to start giving away her Elvis collection of rare things. Worth a pretty good penny. THey were always to be mine. But you see... since she is sick mom. I should actually have them, don't you think? Family is truly pathetic! Birds in the fields pecking at bugs is a more peaceful place to be, than to be with with any of them. Can't pick your family. ~M~
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that really makes me feel saddened! I just don't get it, why families treat each other so badly. We are put here to help each other in this already shitty world we live in. Why on earth would they want to make it bad or worse. It's difficult enough!! I am also thinking of you Mae! I know tomorrow is a big deal. Much love to all ~M~
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......today's visit with my beautiful grand puppy. Grand ma took me on two walks and we ran and played and looked at birds and geese. Chased leaves. Wrestled. (Watched Grand Ma fall over again).0 -
I was recently accused of being a "grumpy old lady" by my DH. I know he said it with love but now but it seems since I've begun this journey with him we've switch personalities at times (i.e. Optimist vs. Pessimist). Obviously I'm the negative one. I've gone through floods of anger and just being pissed off! Especially at the thought of others (non-cancer that is) getting to go on with their lives...having babies, going on vacation, enjoying their work, socializing with friends. Today is a better day and most of the anger has pasted and for the most part has turned in sarcasm LOL. I was always a sarcastic person but now even more so. I have surgery (bilateral mastectomy w/ expanders) in a couple weeks which I'm completely mixed up about. I know I need to do it but it is sad to say goodbye to a part of me. I've been reminiscing and looking back a old pictures of me and my husband.
Love to all you ladies - You give me an outlet and keep pushing ahead!
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Thanks for all your support ladies. I got stuff from my mom earlier because I have a daughter and was her primary caregiver. She wanted me to choose jewelry I would wear and then pass on to her only granddaughter. Gee, thanks mom ! I really hated that she wasn't giving it as a gift to me. I can play with it until I die. I found out about the engagement ring because I wanted her to wear it in the casket. She held on to that ring something fierce and refused to take it off. I figured we would take it off before she was buried. So, it turns out sister who was with mom when she died took the ring and wanted her son to u s e the gold to make a wedding ring for his fiance. That's when the fire works started. I now have possession of all the jewelry and people will need to look at it and list what they want. My daughter and I won't take anything until everyone else has gotten what they want.
Micmel. I've done all that stuff with my parents including the life prolonging question. I will also specify in my will or last wishes who gets what. I need to work on the last wishes stuff for my health also. I have little of value but I don't want my kids involved in this nonsense that I am going through. Also, my MILS family kept her on life support for 6months. What a nightmare. The family had some illusions that they could fix my MIL. Even though she went into the hospital seriously ill with numerous underlying health conditions
Bluebird. I actually have skull mets. The MO said that they can be treated as bone mets. It's just that one was pressing on my eye and they wanted to clean that up instead of waiting for ibrance to work on it. They are leaving the other little ones alone. That say my brain is clean. I don't think skull mets become brain mets. I only have bone mets so far. But, i have them everywhere. I had a scan in spring. I don't do well on ibrance and have had so many vacations it took until October for me to get through 3 months. I will get another scan in November to see how I'm doing even though I am on a one month break from ibrance. The ibrance has really wrecked my immune system
I constantly catch viruses and infections. I'm currently in bed with some sort of virus. Cancer s#!ks
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omg Freya sending you better luck and all my sons saint pattys 4 leaf clovers. ( never fails he finds more than 1 when he looks) he was born st patricks day... Anyway. Here is your very own virtual luck! Gentle hugs
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I am currently getting my affairs in order, re-writing my will. I've had one for over 30 years but it's time for an update in light of recent developments, like cancer!
My plan is to die with nothing. To get rid of the stuff I want people to have NOW so I can see them enjoy it and use it or wear it or spend it. I think it's just stupid to hang onto shit that you have stuffed in a closet or in the bottom drawer of a jewelry box. If I am not planning on wearing something everyday, Get rid of it!
We had an elderly neighbour die (he was a friend) and we helped his relatives clean out the basement. It was a horrifying year long procedure. Instead of spending a few weeks going through items and reminiscing fondly about the quirky old guy, it became this gruelling nightmare of slogging through piles of stuff that he held on to, as if keeping it was somehow going to buffer him against death. It should have been sold, thrown out or dispersed YEARS ago. The task was overwhelming and more often than not someone was saying. "What the hell was that old bastard thinking when he kept this shit?" And then his precious item that he hoarded for YEARS went right to the dump.
My plan is to let go of everything I do not use. I have downsized my stuff immensely. My will will make provisions for my few remaining items that I do truly care about. I think is it so important for every person to have a will and to let others know what your plans are, to avoid the nightmare that others have posted about here!
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Just FYI--I remember when my husband's grandma died she put it in her will that if anyone fought about anything...money or stuff...they were cut out totally! It sure helped keep the peace with 10 kids and spouses and grandkids who all wanted stuff! I updated mine and put in that in mine when I got cancer since ours was done when we had little kids and now they are grown with grandkids ourselves. We knew it had to be done and we just told them it is in there so they'd better just make nice when we are gone.
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Before my dad died he told us kids what he wanted us to have. I was supposed to get the garden tiller and a fly fishing rod. My step mother gave everything to her kids and some stuff she offered us kids only if we paid her for them. I did get his teddy bear from when he was a kid though. Death brings out the evil in people for sure.
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Smart lady!
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I just spent an hour and a half at Walgreen's (not my preferred Friday morning activity) picking up ONE prescription. There are several Walgreens' where I live and I normally use a different one but this prescription is compounded and this is the only Walgreen's that makes compounded drugs. Every time I go to this store, I realize it is very poorly managed. People go to pick up prescriptions because they are SICK. They do not have the physical or mental energy to stand in line for an hour to wait to get to a person who might help them. This Walgreen's has three windows for prescription pick-up. I have never been there when more than ONE was open. So people who take extra time are in the same line as I am. I just want to say my name, they bring me the bag and I pay for it. (I use their express pay so even that is shortened.) Two-three minutes, tops. The three people who went before me took at least twenty minutes each. Yup, I was in line for an hour. Then when I complained for an extra minute, I became THAT PERSON who makes the line move slower. I looked at the mass of people waiting and felt very guilty. The person who helped me at the window wrote the name of the store manager and the pharmacy manager on my receipt. She was very anxious for me to tell my story to each of them. She said it is the most under-staffed Walgreen's in town (or maybe the country). I asked where I might find these two managers. She was vague on that information. I just walked away because I was feeling even more guilty about the people waiting. The store was pretty empty and no managers loomed. I decided they might be in liquors (that's where I'd be if I managed that store). No luck. The two young ladies working there said the store manager is taking a few days off. Figures. When I asked about the pharmacy manager, she said he would be in about two. It was 10 AM. I went home, exhausted but ready to rant. This will be posted here, on Facebook, and sent to whatever Walgreen's corporate entity I can find.
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I just emailed that rant to Walgreen's corporate, district, store, pharmacy and other (whatever that is). Do I feel better? Sort of. I need to find a new compounding pharmacy or order it on Amazon. I just don't trust the quality of what Amazon sells. Does anyone else use boric acid vaginal suppositories to prevent vaginal yeast? Not to treat it because that is not a sure thing or recommended by gyn's. It works really well for me a as preventative. Just need to figure out how to get it without such a hassle.
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jaycee49-- does that help prevent yeast when having to take sone antibiotics??
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