My Husband, My Life, My Love, My Family, My Cancer
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Hello all.
Hi Mae. Praying your swallowing gets better soon. Hugs to you from me.
Concerning the discussion of shopping--- I too see those pics of lines outside large stores. How do people do it? Standing in line for multiple hours, in all kinds of weather. No cover from awning or anything. I could not do that. I have the chronic back issues and the bone mets in the spine. I cannot stand for long periods of time anymore. And with the fatigue I could not tolerate hours of the waiting. Bless those seniors. I am sure they don't feel too good either.
I have been logging on Walmart website the past couple of days and it says "sorry, try again later". This morning at 7:30am I logged on and it let me place an order---curbside pick up, and should be ready by Friday morning (48 hours). Woohoo. Of course, limits on all items still, no TP still, but hey at least I got to place an order. I hope I get some of the items I ordered--they will send email of substitutions or out of stock items in the next 2 days.
Crazy. And when will it get any better?????
Moomala- I hope you are immune. I have not even had a cold this year, so I know I am not immune. Unless I had it with no symptoms, which I doubt.
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re the senator and the slow progress coming off a vent - respiratory therapists literally call it 'weaning' - it is a gradual, slow process.
And then after - assuming a successful wean, you go to ICU for more treatment & to make sure you stay stable. And then after, if you are well, you step down to a regular ward and you might go home. BUT if it was a long time in ICU or vent, odds are you will require (at home): physiotherapy, occupational therapy, ongoing respiratory therapy (because lung tissue is damaged), wound care (because there's a good chance you may have a pressure ulcer or perineum skin breakdown from being in bed for so long). Prolonged ICU stays can lead to very weak bodies and incredible psychological stress too. People who were vented or had respiratory problems often report essentially ptsd from feeling like they were drowningJust wanted to add some context to this because for some of us used to our cancer care being under the ERAS model (enhanced recovery after surgery) we're used to a same day or overnight stays for what is really major surgery and so we don't even have a mental picture of what this type prolonged icu type hospitalization looks like.
I've seen online some young ones get weaned bounce back & get discharged in pretty good shape but for many, this will be a long road if they survive.
I think we're all gonna have ptsd
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Moth, can you tell me how being on a ventilator is same/different as having a breathing tube during surgery or other procedure? When I get my biliary stent changed via ERCP every three months, they give me some oxygen to prepare, I go under with sevoflurane and propofol, then they put in the breathing tube and ERCP equipment. I wake up with a raspy voice and somewhat sore throat, and often a fat lip.
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Mae and Mel, I hope that the eating does improve for both of you. Nothing worse than wanting to eat and then not wanting what you have. You do have the voice saying eat, get stronger and the mind and body are like Meh, not right now. I hope it subsides for both of you.
I had my infusion today. It was interesting about the spacing. We lined up outside on spots marked for us to get in. Checked in the front door area and went in. The chairs are spaced farther apart which makes sense and we are not allowed to have anyone else in the cancer clinic with us. Makes sense. Only trouble I had was when leaving, missed arrows taped on the floor showing me the exit. Good set up given the social isolation. I had my own scarf up and down. I get overheated with it so left it down as much as possible until the nurse had to access my chest port. I just could not bear the scarf the whole time. Too hot. Oh well, we do what we gotta do.
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shetland, it's the same thing as you get in general surgery, just longer duration you stay on it
Anesthesiologists operate them for short term but during a long surgery, a respiratory therapist will often be in the OR running & monitoring the vent. Same for ECMO.
in my province they cancelled all elective surgeries so those surgical suite vents would be available if we needed them. (btw, BC is in the massively 'overprepared' camp right now. Our hospital beds are empty, we have unused ventilators. Our curve is bending. I'm so relieved)
btw, some areas are also reporting they're running out the drugs to sedate/paralyze patients for the intubation. being conscious during an intubation sounds like hell to me
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Thank you for the info, moth. I guess I fear a ventilator less now that I know I have already done it, but more to hear there is a possibility of being conscious for it. Not sure what to write on my “Five Wishes" instructions. I have been putting it off for years, and now things are more complicated with the specter of covid-19 creating an emergency situation. As if having mbc would not make a person realize that things can change quickly, but with mbc I have felt I have a good idea of how I am doing and no concerns about lack of supplies and equipment for my care — until now.
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Moth that's good information and I feel more prepared for what's to come for this family. It sounds awful. When I had my mastectomy in 1995 I had a tram free flap reconstruction which required several days in ICU to monitor tissue around the free flap. The woman next to me in ICU had the same procedure but had a stroke during the surgery and was vented. I could hear them talking to her and explaining to her why she was vented and that they knew it is uncomfortable but they will take it out as soon as they could She pulled it out herself in the middle of the night. She sounded conscious to me and I was horrified at the idea.
Mae I hope eating improves. I'm in no way in your situation but I have been experiencing dry mouth and loss of appetite from Afinitor. Forcing oneself to eat is gross and having a limited number of foods that will go down is gross. I have just sent a little request up to the universe for your recovery from this.
Candy that illness I had was just wierd. And the hospitalist changed my MYChart hospital visit from pneumonia to shortness of breath. My oxygen was not going too low but it was dropping to 94 - 95 upon exertion. Really super short of breath. They also told me it looked like the cancer in my lungs was active again but it was not. In fact a PET scan two months later showed that the tumors in my lungs didn't even light up. So who knows. A lot of people are wondering if illnesses they've had could have been Covid. I think we're all just trying to make ourselves feel less anxious. I'm still not leaving the house. Oh - but labs tomorrow darn it. My friends' doctors told them to skip labs this month but mine is being more strict on this. So on with my mask and to the cancer center I will go grudgingly.
It looks as though social distancing is working in NYC. Over here on the other side of the state we are a week or two behind NYC so we expect to reach peak in early May. That is a difficult pill to swallow. (not quite as bad as my potassium pills but that's another story) Being cooped up is no fun. I can't seem to find energy to start a project. My grandkids (aged 10) FaceTime with me but they are acting silly and not really talking to me so that is tiring too. I feel a little sad and alone today.
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Moomala,
I am so sorry you are feeling sad and lonely today. Iwant you to know you are very special to all of us here, and hope that tomorrow is a better day. I try not to look too far into the future....just take it one day at a time. It’s really the only way I can cope with all of the crazy! I agree with the others who have said that the press and tv has not helped with all of the negative updates. There are so many people who are doing amazing things to help each other....I wish they would focus on that instead.
Anyway, hang in there, and please let me know if you ever need a pep talk.
Your MBC sister,
Boo
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Moomala, big hugs from me to you from Canada. I am sorry that you are feeling that way. I can empathize with you. i don't know how long it will be before I can touch my family again and it can make me sad. I wish we could set up a video call and talk to each other in person. I love this site, but sometimes in person chats are really good to feel connected to since we are all in the same boat right now. Cheer each other up when others are down.
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Thanks for the love. Right back atcha! A Zoom call would be fun but it might be hard to get everyone together. I have my weekly MBC support group on Zoom (tomorrow actually) and it works well. I love everyone here too Mara. It's just a great place to come and connect.
I have to go in for labs tomorrow morning so I guess that is giving me a little anxiety too. Can't they draw my blood from six feet away??? (ha)
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I’m loosing my mind sitting in my house. I don’t know what the heck to believe They say the curve. Then I see my state increase like crazy daily. I mean there are many states with tens of thousands of cases. Is this because they are just testing more ? Or is this severe cases that need medical assistance further. ? Everyday every states numbers go up. Up up. People are starting to commute up to my area from Philadelphia. Uh no! Stay away It’s the worst in our state. Stay down there please. It seems like a sludge flowing down From the poor epicenter of all this NJ, now Pa is becoming a hot spot. Connecticut is above it. Either people are doing a lot of traveling. Or it’s airborne !!!! That’s why I don’t want to go outside even.
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I hear you Mel. I hope that you can at least go outside to a backyard even for some fresh air. I do my best to only follow local news but even that is depressing. They are always reporting on estimates by research on how long this may last etc etc etc. I refuse to take those figures to heart. I still consider trying to guess what will happen with covid as cancer, I don't know what will happen or how long I may last with the cancer, covid or any other disease. I cannot worry about that stuff. I only deal with day by day. If I am well, that is good. Grocery supplies are annoying to get, but I have what I need now. That is all I can ask for. Don't watch US coverage like CNN because this does not affect me. Stick to your own city, your own situation etc.
I have started actually calling my DB and sIL. We don't typically talk on the phone,we texted each other and used to have visits. I decided we can talk for a few minutes a couple times a week to keep up with each other. Just don't need them worrying about me since I am doing fine now.
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Moomala - when the news first said they could tell covid lit up a CT with ground glass opacity I thought 'huh, well that's interesting.' Im sure if it gets to that stage in people with cancer, like yourself, it could throw off a false positive for progression. I have only had a respiratory infection once, bronchitis in 2003, and I rarely get coughs otherwise, but this burning lung pain was like nothing I had ever felt before. And the heart palpitations. Like you I am dying to get my hands on an antibody test to see!
Mel - try recentering yourself first on you and your situation and what you can control. Turn off the national/international news - no one knows what is going on and its just bad news right now. Focus on your home and yard and relationships. Then focus on your community and what is happening locally there, like mara suggested. You'll drive yourself nuts otherwise! Is there a routine you can come up with or something fun you and hubby can do together every night or during the day, etc?
This generic letrozole brand change is really wiping the floor with me. I was cruising along just fine on the brand I had but nope! We are back to everything below the waist aching and burning and the left (non-cancer) low back and hip stabbing pains. Supposedly that is one of the side effects of this brand, I dont know, all I know is that it makes me not able to sleep, which makes me either anxious/angry/weepy depending. Its like the worst PMS I've ever had, but with bone pain instead of cramps. Had a cancer meltdown last night for the first time in months and I don't know why, I wasn't feeling particularly bad about cancer lately, but I guess it had been building all day. To not get out for real exercise like the pool, feeling so awful about the appearance of Frankenboob, maybe release of stress around this move and all. I miss physical therapy because it involved loosening up my back muscles and made everything ok. Im tired of being around screens all day, and I don't want to write my year end evaluation because who wants to really remember 2019?
Its a beautiful morning here and I think we will make a run to the wholesale butcher to get some steaks and pork loin and ground beef. To not grill today or tomorrow would be a sin. Its two streets behind my hospital so can check out what is going on over there too, from a distance.
Where's Philly been at?
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Just checking in - missed about 10 pages! It seems we’re all kind of in the same boat, at various stages. Little good news for anyone, frustrated and rightly scared (except for those who had recent great scan results). It’s concerning me a bit that many of us are understandably on a downward spiral mentally and we might be unwittingly reinforcing that with each other, even though we’re trying to be supportive? I certainly usually leave this thread with something hopeful...but not today.
Just trying to be grateful for the tiny wee small stuff is the best I can offer for the moment
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Karen~I am better today. DH Arrived back this morning. Now we can drive each other crazy. I wish it would stop being so cloudy. April showers bring May flowers they say. I guess misery loves company , we all know we already have enough to deal with. They said the curve is flattening. I’d like to know what road they are driving on. I take heart in the fact that I’m always inside and people around me care enough to scrub up. It’s always good too see you! One day At a time....it’s all we can do.
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Hi all. Well yesterday I did something I wonder if I should have done. I posted about wanting to go clothes shopping- new tops and shoes. Well yesterday I went shopping online. Bought a pair of shoes and a couple of tops. Doesn't sound like anything bad. The hesitation is because the UPS/FedEx driver will have another package to mess with- mine. They are overworked and have a chance of getting the virus too. And my items are not essential. Also, I now worry that the items will be germy when I get them. I guess I can spray down boxes and wash clothes in washer. I wanted so badly to do something "normal". I am looking forward to the new clothes. No where to wear them yet with staying in my house. But if I can ever get out again, I will have some new spring clothes.
I still want to get out and do things I cannot do online--new glasses, get vehicle serviced, HAIRCUT.
I was thinking this morning, I don't want to die of COVID, but I also don't want to die of cancer. I don't want to die period. I want to live longer. I am 49 years old. I want more years.
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Candy, I hear you and agree with you on your last lines. I don’t want to die of anything yet either. My state is now expecting a lot fewer cases overall from all the staying home people have been doing since mid March. But I worry that when we all start going places again that all of us not previously exposed people will be getting it. Maybe not? My MO took me off Ibrance for 6 weeks to get my immunity back up during this Covid time. But that’s only temporary.
Sondra, I just had a Letrozole brand change this last time too—they gave me Breckenridge instead of Teva. I have sleep problems now too, and getting up from the couch is pretty rough. What brands have you had, and which is the bad one? I hope those SEs settle down for you. Some of the little pills we take are good but some are awful.
We’ve had some crazy weather here. Tuesday night a tornado touched down in part of my city, luckily just trees down and some roofs damaged, no one hurt. Then Weds it was 70 and beautiful, not common here in April. Now this morning it’s snowing huge flakes, and 30.
Mara, The check in with your DB and SIL sounds good. Hearing each other’s voices gives all of you a good connection for the time being. I so admire your finding ways to make things better for yourself.Mel, Glad today is a better day for you.
Karen, Hello! The wee, small stuff is so important, thanks for saying that! I’m happy for my banana nut muffins for breakfast today and for some entertaining tv coming up. (Just on season 1 of Ozarks but enjoying it 😊)
Hi to everyone else reading here! I hope there’s something good in your day today. 🌻
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Candy~ I am also 49 and agree with you completely. I just got off the phone with my mother. She has a fever of 100.4. Not good. She has copd. Not good. I have a bad feeling about this ladies. She's already weak. Here we go again. My father was ill and passed away May 11 2019, so one year is coming. Don't they say that the original married die within a year or each other ? Yikes. she lives far away And even if she didn't they wouldn't let me near her. She's also very stubborn. She won't go and get checked. She's quite grumpy actually. Always has been. I can usually bring her out of it. Not today junior, not today...
Waving to Rosie and Moomala!! And Karen!
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Oh Mel that is scary. Really scary. My sister has COPD and my husband has histoplasmosis ( this is a lung condition you get from inhaling a fungus from bird poop) They're both scared and so am I. But lets remember that so many people are getting tested and the large majority are negative. In my city as of now 5666 people have been tested and 5039 were negative. I hope your mom will be okay.
I went and did my labs this morning. Took all precautions like masking and such. They're also pretty good at the lab. They had on masks and plastic face coverings. There was only one other person waiting for blood work. It made me a little bit anxious but that's just becuase I haven't been out of my house in about a month. It was nice to drive to the lab and see the scenery. Oh and my care wouldn't start this morning. Duh it hasn't been driven in so long!
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Candy678 was it you that was asking me about Gabapentin? I think either you or Dodgersgirl or both were wondering. I am on week two and upping my dose each week to get to 900 mg per day. It is working on my sciatica and most of my other pain. It's also helping quite a bit with sleep and anxiety. I really hate taking new medications and I really would rather just push through it but my back was getting so bad that it was waking me up at night. Was taking a bit of Advil or Tylenol each day. I notice that since I started the morning dose a few days ago that i am a bit sleepy during the day. The nice thing about Gabapentin is that you can really play with your dosage. For example I am still sometimes waking with back pain. The palliative care NP said that I can take 300 mg in the morning and instead of adding a midday dose I can take 600 mg at night. I hope it will keep working. It is very nice to not have that radiating pain going across my low back or the sharp nerve pain I was having from the compression fracture in my thoracic spine.
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Rosie- That is what I worry about, going back to doing things and getting COVID since I am not immune.
Mel- Oh my. My thoughts are with your mom. Does she have anyone close to her that can try to convince her to seek help?
Moomala- I did ask about gabapentin. My PCP recommended it for my chronic pain--rheumatoid arthritis/cancer/AI use/chronic low back issues. I have not tried it. As you said, just hate to add another med to the mix.
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Thank you Ladies~ I have to admit I'm concerned. The fever started yesterday. She said her neck hurts, so there are the aches. I just don't know what's really going on My step father says she won't go to the doctor it will go away!! Stubborn woman!! I'm like six states away. She knows if she does have it she will be alone. And she knows that. She isnt a very pleasant patient or person for that matter. But her mother wasn't either. She's better than her mother but, stubborn as a bull. I'm just worried .
My step father didn’t take it serious enough. If she got it. He brought it in to her. She can’t walk well also. So that adds another degree of issues.
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Rosie - ha, I just switched to Teva from Sun Pharma. I had a third of the month on Sun and now on Teva. It is driving some wicked anxiety, fatigue, sleeplessness and making me feel just absolutely crazy/scrambled in the mind. Kinda like when I started everything in December and just wanted to sit down and start screaming to get all the crazy emotions out. This is day 14 in my cycle, though, and 13-17 tend to be on the iffy side and then I trend upwards to normal from there. The hip pain may actually be our damn mattress, I may sleep on the other bed tonight and see what happens as that one is much firmer.
I just had a really good dinner of some turkey patties, spinach, and spiced chickpeas with a little ranch and hot sauce on the side, and I've been pushing a lot more water since last night, so hopefully that will help too- I noticed my hip was FAR less painful today than yesterday.
And who knows - it could all just be slight side effects exacerbated by all this weirdness! (and I was housebound in December too so...)
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Sondra, I just got a refill today, and it’s another new one for me—Accord. Should be interesting! I hope your crappy symptoms go away soon. I’ve read that some here BCO request only a particular brand from their pharmacies. I don’t even know which one I’d ask for.
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Rosie - I think there could be quite the supply strain right now, I know that in the UK they are putting everyone on letrozole or one of the other inhibitors to hold them over until surgeries can be resumed. I am doing better today after getting a full nights sleep - I also did some PT work and yoga stretches (I can get into pigeon pose now, which helps a ton) last night after I posted and that seemed to help clear the crazy feeling too.
Its going to be almost 80F here today and we have a pork loin already marinating in garlic and spices, ready for the grill later, along with some sweet potato fries and a small salad. Easter is a 4-day weekend here, so let's see how well social distancing holds together. They are already saying lockdown is extended, but since the PM is still incapacitated they cant say exactly for how long. No way they let up before June though, that's how long the bailout was for.
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Morning all, from Illinois.
Waiting on email that I can go pick up groceries from the order I placed Wednesday morning. I should be able to get them today. Will be interesting what is substituted or what I will be told is out of stock. Haha.
I listen to several different news outlets-- ABC, CBS, CNN, etc. Last night on CNN they had a "Town Hall" when people could video/Twitter/etc their questions. An older woman-- probably in her 70's or 80's-- sent in a video with a question. She asked if the elderly/high risk people that are sheltering-in now, when things reopen will those be the next wave of victims. Good question. The panel just ho humed the answer. They said "we will have to watch the numbers and hope the hospitals are not crowded too much". Great. Grrrr. So if we have been following the guidelines now, then we haven't gotten sick, but yet also have not built up an immunity. So.... are we really helping ourselves? Yes, I know that we have to slow the spread for the hospitals, but I don't think I (we that have no immunity) will ever get back to a normal life. Also mentioned was that a vaccine would probably not be available until Fall 2021.
Our Governor also gives a daily briefing. One reporter asked about organizers of summer festivities -- festivals, etc -- if they should control crowds or cancel plans altogether. The Governor answered the organizers should probably just cancel planned events. Probably a good idea. But, yet again, when is life going to be normal again?
Wow, hard to wrap head around.
So groceries today. Treadmill walk. Not much else. I feel like I am wasting what life I have left.
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I don’t really do a lot each day. I am a home body originally by nature. I just don’t like being told that I can’t go or Do something. My son could go see his friends again and love a life of 23 year old. It’s the suppression I feel about not saying hey. I want to go shop for a new shirt and cannot. Little things like this. I just get bored a lot of I don’t plan things to do. Cross stitch only so much. So I do get bored. Dh helps. But sometimes it’s hard to be by yourself to think. I kinda need a nice balance.
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I don't go out to stores except for necessities. I sometimes do need to visit more than one store if my supplies are out of stock. I do go outside for regular walks and when waiting for delivery, just walk back and forth up and down my street. Grocery stores are closed as it is a holiday today as well as Easter Sunday which is not unusual. The saturday between these two days is usually crazy busy, almost as bad as Christmas. Won't go near a store then.
My easter will be at home, but we have not done easter since Mom died last year anyway, so it does not bother me so much. If I feel I need contact with DB or SIL, I will simply call them. For now, walking outside and inside, making my pennies off my earning sites and that is about it. That is fine with me as well. Today, I am skipping the news. Only thing that was a nice surprise is we get what is called GST and I got a payment for 3 times the amount due to covid. I will save it as it will always come in handy for something.
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I am not a socialite. I don't party. I live in a rural town. I am pretty much a homebody too. Like Mel said, I think it is the being told you cannot do something that is the worst. I don't feel overly wonderful physically. The hot flashes, the body aches, the fatigue. But if I feel well enough to go to a department store to buy a pair of shoes, or go get a haircut, or go to a church service, I want to do those things. I live in a rural area, so going to my hairdresser is in a small building. Or a store is in a small building---not a big mall situation.
I used to work a full time job. Now that is gone with the cancer. After I "retired" from my job, I started doing some volunteer activities. Now those are on hold due to the virus. I just want to have something to look forward to, to break up the daily monotony. A committee meeting, a day of grocery shopping, a hair appointment. Now it is nothingness each day. One day going into another with nothing to do or look forward to. At the end of a day, I think " Well there is another day gone, never to come back". And then I worry the MBC may get worse and then I will feel too sick to do anything. I just feel like I am waiting to die.
Woohoo---time for the treadmill walk soon !!!! Happy, happy.
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Maybe we need to wrap out heads around “ this will not be forever”? I too have been wondering about whether this lockdown will be what is left of my life... but NO decided not having that. If it is so be it, but I / we still have something to offer and we ARE of value. There’s def a bit of ‘ welcome to our world’ with folk who are actually pretty healthy panicking... and I have thought, but never yet said, imagine feeling like that ALL the time - as we do.
I’ve found giving a bit of support to others ( online and by phone) helps...and they help me in turn. We pick each other up when we are down, but it really doesn’t help if we are ALL down at the same time!
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