STEAM ROOM FOR ANGER
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moth, i'm the same, i go to the worst place first. thanks for the info on the bladder lining, totally makes sense as my gut, mouth and feet are suffering, but not my bladder this time. take care, gg
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A few years back, after not having UTIs for years (decades, actually), I started to get them again. Frequently. After doing some research, I decided to take cranberry supplements daily. While the jury is out on whether cranberry can resolve an infection that is there, the research indicates that cranberry can stop an infection from happening. I checked with my PCP, she's fine that I take it, as is my MO. I've only had one UTI in the years since I've been on the supplements and that one was questionable (in-office test said yes, lab test said no but I felt better after antibiotics so I think it was).
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Beesie and Moth, it must be made clear that cranberry juice for UTI is NOT that sweet and very tasty Ocean Spray stuff you get in a grocery store. No no no. That is NOT the stuff. You need the pure, crushed, unsweetened cranberry juice you buy at a health food store. That stuff is VILE and undrinkable. You will roll on the floor and grab your throat and kick your legs. Weeping might be involved. Shouts of "Oh dear god in heaven, what IS this shit?" might be heard. But if you want to apply cranberry juice to a UTI, forget your pleasant glass of Ocean Spray. (someone else said this a few posts back but I felt it warranted a second vote)
I used to have so many UTIs that regularly peeing out blood was no longer cause for alarm. I peed out a lot of blood and to this very day always register very high amounts of occult blood in my urine. Back then I took high doses of vitamin C, zinc and dolomite for bladder issues. And a lifetime worth of antibiotics.
After many years of having an infection, making an appt, waiting for appt, doing the pee test, waiting for results, waiting for prescription, filling prescription...I freaked out. Now I ALWAYS have a big bottle of antibiotics in the house. I know when I need to take some. I have played this game long enough I am an expert. But I laid it out for my doc that he knew and I knew when I had a bladder infection and I was not going to waste time and suffer for the sake of 'procedure', so write me a damn prescription for 60 of these stinking things and be done with it. I have changed docs since then and I have this talk with every one of them - I will NOT wait for YOUR schedule, getting worse the whole time! Write me prescrip now and don't waste both our time. So I have my meds, I DO NOT take a full 5 or 7 day course unless I feel I need to. Sometimes 3 days does the trick and if it does, I quit the meds after 3 days. I know you hear the line..take all your meds...I do not. I take what I need and those meds still work. Have never developed immunity.
Being older and on tamoxifen has changed the nature of my lady bits and now UTIs are linked to the fact that things are just a bit more worn out. I sometimes smear on some estrogen cream, just to give those tissues a fighting chance. There is a huge debate about the safety of estrogen cream for estrogen positive cancers. But I ask, how miserable do I want to be? I want to be alive but I also don't want to stagger around with a horrible UTI if I don't have to and if now and then I rub a glob of estrogen cream into my lady parts, so be it. I will take that chance.
Hope you both get a handle on this.0 -
Runor
I can't believe that any reputable doctor would write such a large prescription for antibiotics, or allow a patient to self-medicate in that way. It sounds like your extreme UTIs might be part of some other urinary tract problem. I've used Ocean Spray (or generic) to head off UTIs. Eating dried cranberries also helps. Maybe it doesn't work for you if you have such severe infections. That sounds pretty uncomfortable.
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Runor, I didn't mention cranberry juice, I was talking about capsules/gel caps. That said, some studies have found that even the cranberry juice cocktails available in the supermarket do provide benefit. So it appears that whatever cranberry product people choose to use can be helpful.
Urinary Tract Infections — Nonantibiotic Prophylaxis With High-Dose Cranberry Proanthocyanidins
"A pharmaceutical-grade supplement that contains proven effective 36 mg PAC is a tool that can be simply and safely implemented into routine care to prevent recurrent UTIs"Consumption of a cranberry juice beverage lowered the number of clinical urinary tract infection episodes in women with a recent history of urinary tract infection
"In this randomized, double-blind, placebo-controlled, multicenter study in women with a recent UTI history, the daily consumption of a cranberry beverage for 24 wk produced a 39% (95% CI: 9%, 59%) reduction in clinical UTI episodes." "The cranberry juice cocktail study beverage used was similar to commercially available low-calorie products in its juice content (27% cranberry juice) although additional measures were taken to minimize the variability in the contents of proanthocyanidins and other bioactives."
Cranberry Reduces the
Risk of Urinary Tract Infection Recurrence in Otherwise Healthy Women: A
Systematic Review and Meta-AnalysisCranberry Capsules More Effective Than Juice for UTIs
Cranberry Studied for Effects on UTI Risk in Elderly
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I started taking the cranberry capsules just before my hysterectomy and I like to throw the dried fruit in my salads. My urogyn said it was important to drink plenty of fluids before 7PM. and not much after and no caffeine after 3PM. I remember my Mom saying as she aged " I'm not drinking I don't want to have to go to the bathroom so much!" She started to have numerous UTI's. Until 90 she was still continent, but I think she didn't urinate or drink as often as she should have. After the hysterectomy I was told to empty my bladder each time I felt the urge and to change my cotton liner 4 to 5 times a day. Knock on wood no infection and no leakage. As we age I think it is harder to drink water and do all the healthy things we are supposed to do. Especially being in so much with Covid-19 stay at home orders.....that glass of wine is just too appealing. Good luck to all! Missing my family on this holiday weekend.
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Alice, I have worn the carpet out in my doctor's office showing up for the rigamaroll of peeing in a bottle then waiting, all the while feeling worse and worse. So yes, I DO have docs write me prescrips that I keep at home. It's not like they're narcotics or have a street value. These are pretty dull, run of the mill antibiotics. I have had invasive tests and unpleasant procedures done to battle these UTI infections (typically I call them a bladder infection.) My bladder shows large amounts of scarring. All my pee tests show alarming occult blood. Every single test. This is a known problem with me. Yes, docs write me prescrips so that I always have meds on hand should the need arise.
Beesie, my doc told me to drink cranberyy juice and to go for the health store stuff. Which I cannot gag down. I much prefer to ocean spray cran juice, but consumer reports in past years have shown it to contain little actual cranbeyyr juice. That may have changed, I don't know. My doc felt the sugar added was no help to an infected bladder. But juice so bitter it gives you a permanenet pucker isn't all that helpful either!0 -
Runor, I worked with someone whose wife got UTIs so often that her doctor did the dame as yours. You know your body and what it’s telling you. Know yo aren’t alone.
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runor, Your bladder issues really sound terrible. I know you are probably followed by a urologist especially due to the hematuria, but have you ever thought of getting a second opinion from a urogynecologist? With the dryness and decrease in estrogen it can make everything worse. I was surprised at what was available today even with BC. Maybe when we get back to the new normal you might want to consider it.
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From a Mayo Clinic article: (https://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/diagnosis-treatment/drc-20353453)
Frequent infections
If you have frequent UTIs, your doctor may make certain treatment recommendations, such as:
- Low-dose antibiotics, initially for six months but sometimes longer
- Self-diagnosis and treatment, if you stay in touch with your doctor
- A single dose of antibiotic after sexual intercourse if your infections are related to sexual activity
- Vaginal estrogen therapy if you're postmenopausal
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I just started hormonal treatment three weeks ago and every night I wake up freezing and covered in sweat and have to change clothes. I am glad I live alone so no one has to know except me and of course you guys.
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Darlene, sorry to hear about that. I experienced that when I was on my super strong chemo for a while after going into menopause. The chemo put me in. It did eventually subside and I hope the same is true for you as well.
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Well here I am on bco this morning to talk about my breasts and distract myself from work and worry about my husband and I answered some gal named Marie who is actually here spamming the boards! Mods are deleting her posts so I deleted the one I wrote. I wasn't paying attention so now I'm pissed off a little!!!!!!! Ugh/sigh. So much for distraction!!
I don't know where I left off with hubby. Think I told you all that he has disease progression as of last scan. Last week he started a 2nd line chemo treatment that is 1-30 minute infusion for 5 days and 2 weeks off. MO gives it a fair chance of working. Last week he told MO his right leg wouldn't work when he got up in the night to use the bathroom so now he has ordered an MRI of his head. MO also called our primary as if test doesn't show brain mets then he wants him checked for blood clots (mini stroke). He had a telephone visit with his primary and they also give him 2 Ativan to keep him calm and still for the MRI.
So, that's where I am. His MRI is this afternoon so we'll know in a day or two what more bad news he will have to endure. He is sleeping a lot and is very quiet and we don't speak much. Surely he is mad yet I haven't been verbally abused too bad. Haven't had an actual conversation in weeks!! At least I can smile and use my body language around him to try and keep morale from being flushed down the toilet~!!!
I'm also gaining some weight from being home. I will try and just fast and eat smaller portions. I don't feel right exercising or doing a whole lot during this time with hubs if you know what I mean. The weather is not helping either!!! Hopefully we will have time to plant our garden.
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ctmbsikia
How nice to see your post, even though it's not the best news. And it's such a weird time to be going through anything right now. A friend of mine who has undergone years of chemo treatments has had at least one stroke as a result of an aggressive chemo, but she has bounced back and manages very well. She's currently undergoing yet another chemo, but although this one makes her feel like crap for several days after (it's every three weeks), it doesn't seem to have the scarier side effects. It's so hard to see people suffer from the disease OR the treatments. My friend is at least lucky to have more good days than bad ones, which I guess is pretty good after many years of living with it.
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Thanks Alice. We were back from the test yesterday for maybe a little over an hour and the phone rang. We spoke to his primary doc 1st. MRI shows brain mets. He took this pretty good, although he's not saying much he knows his body. The MO then called afterwards and he said he has called the RO and we should expect a call today to do some radiation treatment. We were also instructed to begin taking the steroid (8mg dexamethasone) daily so he had that last night. Since he had Ativan as well yesterday, he did sleep. This morning he's up, chatty cathy, and he went out even though Doc told him not to drive. He doesn't go too far. He's going to the store to get some Pepcid. You just can't stop him and I am not going to get into an argument with him. He's on a mission to survive corona while he knows he won't win the battle with this cancer.
Will see what the RO says. I hate that place, it's a cluster f of people. There's one machine around here and it's at the hospital. He has the same Doc I had, who is good. Not looking forward to driving over there, WAITING, everyday for however many treatments he's going to have. I spent more time waiting then I did getting treated!! Not sure I can even go in with him? I'll probably have a little PTSD just being near that place! Just taking it a day at a time. The sun is out today, so there's that!!!
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ctmbsikia
Sending you a big cyber-hug, masked and gloves! It sounds like your hubby's attitude is very upbeat now, which will help him get through treatments. Apparently they can do amazing things with radiation on brain mets. I know it's hard for you, especially under the current screwy circumstances. One thing I found odd when I was having my basic breast radiation - my hubby was the one in the waiting room, and he made friends with the other patients and their families. I never had time for more than a quick "good morning" before being whisked back to the zap chamber. So I hope you find support and friendship with the other patients and families if you're allowed in there.
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I can attest to the amazing things radiation can do for brain mets. I was dx with a brain met in 2016. Had whole brain radiation first which was a bitch to recover from but I did after a while and then 2018 around easter, a couple of spots at the original site grew. I had local radiation on my surgical bed and been NED in the brain since. I have felt incredibly lucky for this.
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Back from hospital. Hubby did OK-I couldn't go in with him. The RO called me on the phone then they took him in for the set up. He will have 10 treatments starting Monday. Pretty sure this delays the next chemo until he recovers? I'll ask the MO that question.
Mara, how many treatments did you have? Did you have to take memantine during treatment? I guess I should go check out the brain mets threads here too.
This morning at breakfast with the first bite, BAM! stuck feeling in my esophagus. You would think water would work but no. The more you drink the worse it hurts. It won't go down, so I cough it all back up. Can't say if it's just a spasm or if it's something else. I should look back in this thread to see when I was posting about having some GI issues. Whatever it was then, it's gone, but today I feel like shit after this episode. I managed a small sandwich and a zinc cough drop. I don't like my body feeling like it's in a constant state of stress -well today it is at least. I took a short walk and visited with my brother while hubs was at his appointment which helped for that hour! I took a Pepcid and 2 advil. I can't afford to get sick, or go down with anything, I just want to feel good, but I don't. It's not like I can see a Doc anytime soon either! Maybe I'll just go take a nap, screw the rest of this working from home day. I need to go to the pharmacy anyway.
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Hubs doing OK. I took him for labs this morning so now he's sleeping. Taking the steroids he is up for hours and hours at night. I wonder if it will level off? My mood seems like it's dependent on the weather. We are going to get flooding rains later. After that weather looks good and doing stuff around the house, outdoors, not working or running around to appointments will be a huge lift for me. At least I hope. Looking forward to the weekend.
We have all sorts of cards with well wishes that I display, and a friend sent a little care package which included these Upspring stomach settle suckers. It has ginger, lemon, spearmint, and B6. I ate one last night and woke up feeling much better stomach wise. My gut seems to be working well this morning. I am having a hot flash as I type though! Work for me has slowed down, but I am hoping things may pick up again in the coming weeks and that my employer will allow me to stay at home for a little longer due to my personal situation once PA begins the re-opening process.
I'm searching for a rowing machine. I'm not sure I will ever get back to my FREE during work hours circuit training classes anytime soon. Already have a weight bench at home. Must get moving on my own to help with the stress. Between cardio and some strength exercises that I've learned I pray it improves my own overall health. Can't be a sick or stressed out caregiver. I've concluded that working out at home I won't feel bad/guilty going out and leaving hubs alone while I go out to the park. Thanks for listening.
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ctmbsikia - You need to take care of yourself, physically and mentally, or you won't be able to help your DH. prayers for both of you.
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Montreal has multiple outbreaks. Most are in long-term care facilities, but not all. People nearby had guests over last night. There were 6 adults around a fire pit sitting 2 ft apart. Today I learned a friend's BIL is a probable case because he couldn't get tested. His doctor and a public health nurse are keeping track of him, but he isn't included in the confirmed case count. He had been working at a store he owns every day with no mask. He lives not too far from me, but I can't remember where his store is. He seems to be recovering. Hope the rest of his family is ok.
So, the confirmed cases are really undercounted. Outbreaks are occurring within hospitals. We are not plateauing, but the Quebec Premier wants to open the elementary schools.
What happens when you open too quickly?
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That picture perfectly describes the situation.
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That picture certainly does paint an accurate picture.
Ontario schools are closed at least until May 31. From there, I am not sure what happens. Restrictions have not yet been lifted, I prefer the cautious approach myself and don't believe life will go back to total normal until a vaccine comes out. Places may open but masks and social distancing of other people will probably still be observed so we prevent a large second wave. We don't even know if people are immune after having it, just a very new disease.
The second wave of the spanish flu was more deadly as people gathered in the streets celebrating the end of WWI. Caution is warranted.
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Need to vent!
Yesterday my hubby took me out to the pharmacy to pick up one of my prescriptions and then to the grocery store for a few things. I wore a mask in both places. I take it off as soon as I get to the car! It's very hard for me to breathe while wearing it, but I do wear it! So yesterday as we got home and I got out of the car and brought the groceries and my medication to the house to bring it inside my neighbors were outside. One neighbor waited until I was inside and my hubby was talking to her husband before she butted in and rudely told my husband that “your wife shouldn't be going out anywhere because she is at high risk". My husband just looked at her and said “Well, she takes the proper precautions.“
I thought that as long as you take the proper precautions, it was okay. My doctors haven't told me that I need to stay inside. The only person I have been around in almost 2 months is my hubby and we are both fine! What right does my neighbor have in telling my husband that I shouldn't be going out of the house?
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She has none. Just a butinsky nose neighbor with nothing better to do.
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i think it's hard & frustrating because so much of the communication around covid and cancer pts has been unclear and varies from area to area.
Our health authorities & my doctors said anyone who is high risk - incl cancer pts - should stay home except for exercising outside with proper social distancing or essential trips to medical care. No visitors, no shopping etc.
Other regions & drs. have different instructions.
It's always irritating to have your decisions questioned
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moth, this woman is always trying to put her two cents into everything.
She scowled at me again this morning and said I needed to stay inside until after this is over. I was checking the gas level in the mower so I could cut the lawn. I was in my own yard, for crying out loud! The health officials here in my state said there is nothing wrong with being outside in your yard during this crisis, especially if you are doing something like yard workwhere you are getting fresh air and exercise. I ignored her and proceeded to cut the grass. Can’t wait to see if she bitches at me that I need to hide in my house when I start hanging out my laundry as the days start to get warmer.
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Then tell her to kiss your grits.
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I need to post a rant. I can't even take for granted eating and pooping. I am so sick of monitoring everything that goes in and comes out. I am sooo tired of battling diarrhea. It causes me to lose potassium and then the potassium supplement causes more diarrhea! Catch-22. And it was stupid antibiotics that set off the latest wave, not even the drug that gave me so much trouble when I started it in February. All that diarrhea and vomiting made me lose weight and I get scolded for that. So in an effort to gain weight I eat questionable stuff that, you guessed it, exacerbates the diarrhea. I mean stuff normal people can eat, like frozen desert bars or potato chips. Another catch-22. Furthermore, all of this trouble comes with threats from doctors and nurses that if I lose too much weight or turn up potassium deficient again, or if I have too much diarrhea, they could lower my dose or withdraw the drug that has gotten me to NEAD. That allows me more time to live. Or I could get heart problems from low potassium. I am so tired of worrying about this stuff and trying to figure it it out. I feel like I'm going to get in trouble for doing it wrong but I don't know how to do it right. I am trying my hardest. I even have to keep a log of my anti-diarrhea meds and bowel movements for the trial. So now I am trying to dose the potassium very slowly all day and this takes up so much of my time and mental energy. Geez, I'm NEAD so can't I please just live my life instead of dealing with this shit? (Yes, pun intended.) I can't win. And I want to not think and talk about eating and pooping all the time. No wonder my gut is unhappy, with the months of antibiotics last summer and fall, in addition to all the cancer drugs. I fear my gut health will be completely destroyed and with it my immune health, mental health, etc. But I have to do the stent exchange every three months and I always get a course of antibiotics with that. Another catch-22. I feel like saying to hell with it. I mean I don't want to give up treating the cancer but I feel like having a tantrum and refusing to keep the log and take the potassium etc. Just go on strike. Because I can't win here. I'll say it again: It is not fair that at my age I can't even take for granted eating and pooping — that I have to monitor and record and live my days afraid of what should not even require a second thought.
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Shetland, that whole mess sounds horrendous. Do you have palliative care people? When I get to where you are, I will stop taking cancer drugs, NEAD or not. But you are stronger than I am and want to keep going. I won't even get to where you are before I give up. Not doing all that. It just seems like your situation could be managed better.
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