My Husband, My Life, My Love, My Family, My Cancer
Comments
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Mae, sorry about your plans. Hope you feel better soon.
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Saying HI to all here on this Sunday.
I am staying home from church right now. Our church is still having services---our attendance is around 75 on any given Sunday and mostly older folks--70's-80's. They had a fundraising meal planned for today. One lady brought me some to-go containers from the meal. She was saying that she went on a senior bus trip yesterday--40 on the bus. So people in my area don't sound like they are "social distancing". Just going about their regular business. But... schools K-12 are closed for 2 weeks and the stores are HORRENDIOUS. Stores out of TP, milk, dry goods, etc.
I am starting to fear that we will not be able to get food at some point. None. I can social distance, but I have to live. I am thinking about rationing my food that I have in the house. Seriously. What if in the next couple of weeks it gets to the point of stores having nothing. Or riot situation--fight over items in your cart, fight at your car when packing up groceries.
This is getting scary.
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If everyone just stays home as much as possible, and eats from the pantry as much as possible, and basically hunkers down for a few weeks, it will avoid what is happening in Italy. If even 75% of us do this it would be a huge help.
Cancer patients are already very good at hunkering down for a week or two, hand-washing, following medical advice, etc. The rest of people aren't good at it! We could lead the way on this!
Young people feel like getting Covid-19 will be no biggie....they are not thinking about then PASSING it to people who are immune compromised or elderly. Couple ignorant viewpoints on national TV with a lack of testing driving down the numbers of "known" cases..... we have a massive undercount right now. MANY ill people are not being tested due to test rationing, and many no-symptom people also ill without knowing it.
If the whole country except essential personnel stayed home for 2-3 weeks there would be a lot of lives saved. My friends kids and I are doing this voluntarily. Canceling social plans and hunkering down at home.
I go out to exercise alone (hike0. Sometimes I wear gloves (hand rails). I use hand sanitizer or wipes at market and after being in public. When I get home I spray the soles of my shoes with disinfectant and leave them on my porch, then wash my hands immediately.
I spray my door knobs, fridge handle, faucet handles, car handle, key ring once or twice a day too. And nobody at my house has been sick. I just think I need to do what we want everyone to do. That's called being a community member.
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I did go to Walmart to check supplies there. They were out of my beans but had all my other staples, picked up one of each and a couple of frozen beef stroganoff meals that I can combine extra things with. I will be able to stretch my food longer.
Addressing the going out, if you can self isolate, I think that is wise not to go places with large crowds. Myself, I need to travel to several places to get things I need for the house as my ability to carry things is limited. I will be going out for lunch tomorrow with an old family friend but don't think it will be busy. As far as total self isolation, I am on my own and largely cannot do that. Need to go outside and walk.
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They say exercise is not an issue for transmission, and so allow it even in Italy, if you go briefly and on your own.
I would eat at a restaurant possibly, but I would wash my hands before and after, choose a roomy place, and wipe down the table w alcohol wipe, wear glasses to remind myself not to touch my eyes, and not go when it is crowded. If your friend is driving you perhaps you could use her/ & her car to help you stock up on a few staples, like a one week emergency supply, so in case you get sick, or supplies run down, you can see yourself through...?
We who go out must all wash hands a lot, use tissue to sneeze or cough, & avoid touching our faces unless with freshly washed hands. That and stay home.
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I experienced some of the desperation for water at the grocery store. It was like a draw without guns. I was like wow this is just one for the history books. Now I’ve seen it all. Young people ushering past older to get there faster even though they knew exactly what they were doing. I was so disappointed in witnessing. I don’t want things to end up like the purge or anything that crazy. What happens to people when it snows on steriods. I hope it calms down soon..
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There is no toilet paper in the local store. There is paper towel but if you are on your own sewer system the last thing you want to do is flush paper towel or anything like that down the toilet. Then you'll be snaking out the pipes to get the stuckage unblocked and digging your tank out from under the snow to have it pumped. I told Hub it was time to start digging an outhouse, you can throw whatever paper products you like in one of those and it can compost away for ages, no plugged lines, tanks or septic fields. I'll have to find some old magazines for emergency bum wipe, just like in the good old days.
I did give in to panic buying today. Fearing a food shortage I rushed to the grocery store where I purchased two pounds of coffee and 4 onions. And a bag of dog food. When the dog food is gone we're eating the dog.Mae, I am so sorry to hear that your trials continue. Enough already, you must be beyond sick and tired. I am so sorry. Everyone else, avoid the sickies and stay well!
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I don't have any alcohol wipes here. They are cleaned out online and in the store. Just going to do an excellent job washing hands and get outside regularly. Not going to worry overly. A lot of activities here that involve a lot of people in small enclosed spaces are being shut down for a couple of weeks. Should slow spread and we are getting into april and may soon, since the regular cold and flu slow down at this time of year due to more outdoor activities, perhaps covid 19 will do the same.
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where are you getting your proton rads?
Thank you.
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Funny how the media keeps covering the covid 19 so much that they forget that the regular flu has killed WAY more people. Pneumonia kills more people etc. Yet we are not seeing so many stories covering this. The constant coverage of covid 19 has caused the hysterical shopping. If they would just let us know what tests are available and what places are being closed down and travel restrictions, they could leave any covid 19 related news to CDC, WHO etc. I do blame them for causing undue fear over something that still not as bad as flu and other diseases we went through in the last few years. Be cautious, practice hand washing if you can. I do agree with some social restrictions too. I just don't agree with the hysteria that was created.
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we haven’t heard from Minnie. Italy isn’t doing well at all with this and I feel so worried for those people. I know Minnie is from Spain but I haven’t heard from her and am concerned. Europe seems to be being hit the hardest after China. I looked at a map today of infections and regions. The us looked like a small dot. In comparison to the huge obvious area of the epi center of the infection and where it started. In some Fish Market in Wuhan. I don’t know if I could ever purchase fish from that type of market ever again without fear now.
I just hope Mother Nature does combat with this thing soon! Stay well friends
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Hi Anna -you are very welcome! You may have picked up that this thread is our ‘living room’ and we can be irreverent and vocal... and rightly so.
No- one here is dismissive of the Virus, but we definitely are criticising the behaviour surrounding it as you can see from the previous posts.
I think those of us who are stage 4 patients are absolutely allowed to poke a little fun at the majority who seem to think the world is at an end because they can’t buy stuff... when we deal with a great deal of unimaginable shit every day!
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Candy, there are still a lot of things that people have not taken completely off the shelves. Eat as you normally would. If you are worried about stores closing, get more canned goods, there are still plenty of those to be had. Consider frozen meals and maybe add more nutritious things to them if need be. Phone the stores to find out when they restock. There has not been talk of closing grocery stores here so I would not panic yet. See what is available online as well. I just go to different stores a few times a week, partially because I can only carry a limited amount and because, if one thing is out of stock, I can usually find out when they restock and visit then. This is how I was dealing with my beans which are almost always front and centre. Same with queso and tortilla chips crumbled on top. I love any combo of beans, spinach, various beef or chicken patties which are cooked from frozen. I will sometimes mix packaged stuffing into the mix which sounds weird but is delicious. Lots of ways we can get good nutrition.
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So, this is weird and disturbing, I got a denial letter from my insurance company yesterday saying that my herceptin & Perjeta is not approved. It explains that the request was reviewed by an MD who specializes in obstetrics and gynecology, ummm, why not an oncologist? It further states that these meds are not for use after progression and that recent MO notes appear to show progression but they clearly say stable, I double checked. Looks like I’ll be making phone calls tomorrow, which is frustrating and extra difficult since no one can understand my horse whisper of a voice, ugh.
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Mae, I am confused. Have you progressed in just your brain or another part of the body. Just because your brain progressed, that does not mean these drugs failed. They don't cross BBB. If your body progressed as well that would be different. I don't recall reading you progressed from the neck down. You should still get H and P. You are right, you do not need this on top of everything else. I hope you get it straight soon. Also, why the heck was an oncologist part of this decision?
I progressed back 2018 in my brain and had spot treatment but still NED from neck down. Once I finished rads, I was placed back on H and P. Only reason I don't take P now with the H is due to diarrhea SE.
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Oh, for heaven's sake, Mae, like you don’t have enough crap to deal with. Is there someone at your cancer center (an NP who works with your onc?) who can deal with this for you?
Candy, my dear, is there perhaps a church member or three who can add your shopping list to theirs and drop off some groceries?
I had a high fever last night. I am self quarantining. Not really worried for some reason.
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Yes, progression in the brain only, not the body. I don’t expect a gyno to get the specifics of cancer treatment and there’s a big part of the problem.
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Mae, sorry about the typo, I understood from the start no onc was part of this. That is what I meant to say, why was no oncologist part of this? What are they playing at? Since you have not progressed neck down, obviously H and P should still be on the table. I hope you get it fixed soon.
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Shetland, I am sorry about your fever. Probably a good idea to quarantine. I hope there are people who can pick up your supplies if you need them. Glad you are not worried about it. You are acting out of an abundance of caution which is totally understandable.
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Morning Ladies.
Shetland- Oh my. Take care of yourself. Any other symptoms except fever? You should call MO and let them know.
Grocery issue- I am going to check my local WalMart. I have never ordered groceries online. How do I do it? I think, just place order, pay with credit card, and pick up at store. But I am going to call and ask if that is how it is done. Do I drive to back of store, or some designated pick up location? I know they don't have delivery. No one has delivery in our rural area. We have a WalMart, an Aldi, and then small Dollar Stores.
Ok, advise from the group needed. I get my hair cut every 2 months. I am a week late already. Hair is thin from the meds, and now looking scraggly from needing trimmed. I have appointment with hairdresser tomorrow. 1st appt of the day for this stylist. There are other stylists in the building with customers but I wouldn't be around them. My stylist knows of my low counts and said she would clean her station, have a clean cape for me, etc. She said it is up to me on if I want to come in. I want to. I want to get my hair trimmed and then lay low for the next couple of months. Then, maybe when needed trim again, this crap will be over. If I don't go tomorrow, it will be another couple of months and I will look horrid. I have been staying away from church, and basically been in seclusion. Only going to necessary things--doc, groceries, bills. I know others have been doing normal activities.
What do you think? Should I go or cancel.
Edited to say---- The stylist did say that customers are coming in with coughs and such--flu/cold like symptoms. So germies have been in building. Not confirmed cases of coronavirus.
And I am starting week 3 of Ibrance--lowest counts, I guess.
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Any way you could persuade the stylist to come to you?
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Candy,
Or could you wait until the end of your "off" week -- which sounds like it's soon -- and go then? When I had previously asked my MO about having dental treatment, she told me to wait until my "off" week just as a precaution.
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Candy~ the joy of getting our hair done when it needs it. To me is big time. Relaxing and fulfilling. Soo.... go, if she's cleaning her station and no one else will be in the salon. Get in and out, or maybe you could wear a mask. That way you're covered. Even if you hold it instead of wear it close to your face. It would be hard for her to cut with it hooked on your ears. Then a trim and a fancy up. Doesn't take that long with a seasoned professional. Couple of snips and you're rolling. You could even dry it yourself. If people start coming in. Don't stop everything we need to do for ourselves. Haircut to me is important!
Mae~all I can say is are you freaking kidding me ? Really? Like wow Someone there needs a good shin knocking! People are morons!!!! Like come on!!
Mara~I am always impressed with your independence! Seriously, you're amazing. You go girl !
Karen~ I love love that you called it our living room, it means you've found your home 💕. Warms my heart. We've found you.
Tanya~ how are you sweetheart?
BooBoo~thinking of you sweet sister.....
Blueshine ~ haven't seen you!
Stillivin~ shout out to you and pots 🌹
Lynne50's~you never leave my mind. Never!
Chelle~ either do you my sweet sister.
BevJen~Hope all is wellMJH~I would love to see the pics of you guys and your lunch if you have them, I miss our other lynne also. Just thinking of old times. Time is fleeting. Hope you're well!
Rabbit~ congrats my sweet friend. Good news for us both. I'm so pleased. Hugs to you......
Jens got this~ always a delight to see you here. Pretty woman!
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Hi everyone from Lockdown Spain. Luckily where we live is a very quiet village, with not a lot of visitors from outside. So far we have no shortages of food, or anything else. Our local supermarket is well stocked. I hear today that they are sanitising the trollies, and keeping distance between customers. Staff wearing gloves and masks. We are allowed to shop for food, we are told that restaurants can offer home delivery, but as there are so few people demanding it here, I don't think it will happen.
I'm due to go for treatment tomorrow and so far I haven't been told not to come, so will attend. Results of MRI of brain, so would like to see the Oncologist.
Trying to catch up here. Main thing ladies, is take care!! Keep washing hands. Stay safe. X
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Marie~welcome to the thread. I am Not sure who you were directing your question to?
Runor~ Hi darling. Always good to see you here 🌹!
Santa~ awesome idea to have the hair dresser come to candy!!!! I hope that works out! Perfect!
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Minnie~ I was just thinking about you, and here you are! I'm pleased you and your surrounding community are fairing well. I hadn't heard from you and I keep track of my peeps And my OG people. (Oldest group). Thank you for checking In!!!! Hope you continue to be not effected. And I wish you well for your results A lot of us have been scanning as well. Seems to be the time for it!! In your pocket! Precious friend!!
we are also on lockdown. DH could be here up to two weeks, his district is closed. So he’s working from home Is that what Spain is also doing ? I hope Italy improves. So many sick. It’s so worriesome0 -
Thanks for the suggestions.
Santa- No she won't come to me.
BevJen- I thought about scheduling on off week when counts are better. But, so far, no confirmed cases of COVID-19 in our county. Some in counties around us. And probably out there, but not confirmed. I am thinking if I wait, things might get worse in our area. I made appt 2 weeks ago and had no idea we would be dealing with this virus then.
Mel- I was planning on wearing a mask, and even bringing 1 extra for her to wear. She just dampens my hair with a water bottle, so I wouldn't need to dry it. And usually appt only takes 45 minutes or so.
I really want to go. Just to have that fresh, haircut feel. I was even thinking of showering when I get home in case any germies are on me.
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This whole thing just keeps getting creepier and creepier. Just overall the feeling is weird. To think just going outside could make us deathly sick? Okay great as if cancer ain’t enough. I already go crazy being so inside all the time. Now make it worse ! Ugh. My DH said, giant had nothing. Nothing. No chicken. No ground beef, no anything. Empty shelves. Pallets! What if that can’t be replaced fast enough? Then what? People freak more? It’s definitely un heard of. Scary shit!
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Mel- I agree this is scary.
I called our local WalMart to ask about ordering online and pickup. The guy was nice. He wished me well concerning my cancer (I told him I was a cancer patient and have never ordered groceries online before). But he said that they are out of a lot of stuff-- no milk, no bread, no eggs, no meat. He said they will fill my order to the best of their ability. I cannot go from store to store looking for items. So I guess I go without.
Oh and I decided to cancel hair appointment. Have not called hairdresser yet, will do that soon. But I probably shouldn't potentially expose myself just to get a haircut.
I don't know if I can handle this for weeks on end.
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I live in earthquake country, and we are told to be self sufficient for 2 -3 weeks. I have emergency water, canned goods, pasta. I have a full freezer. So far, the grocery stores here are ok. The hand sanitizer and baby wipes are all gone, but food is not a problem.
We have to handle this, because it is reality. Everyone pitching in to self isolate gives the virus nobody to move to and it dies.
The more we bite the bullet right now, the better it is likely to be in one month. The more we stay home or keep social distance as much as possible, more it can be contained and not over stress our hospitals. Nobody wants it to get like Italy, where not everyone who needs a ventilator gets one.
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