Panic

[Stage4Gir]

I’m so scared. If Italy is making the choice to let over 80 patients die what will they do with Stage 4 patients here??

[nstonerocks]

There is so much uncertainty and anxiety associated with mbc, the prospects of the pandemic make everything worse. We don’t know what will happen here. It is natural for the mind to grab on to yet one more thing to wrestle with. Will you spend your time going down these blind, very dark alleys or will you try to refocus and deal with what is in front of you at the moment. It will not make anything better nor will it change anything to terrorize yourself with the dire possibilities that don’t yet exist and may never. Having said that, it is prudent to take every precaution possible to keep yourself safe

Italy is indeed going thru a very tragic time. I pray this virus will soon be on the decline and they can recover individually and as a nation

I don’t mean to preach. And I am certainly no stalwart, brave person calmly looking down the barrel of our double predicament. Today my husband and I and driving into a major NYC hospital to get my scan results. I will wear a mask and I will wear gloves. I cannot bear to get whatever news I am facing over the phone or computer, and my doctor has not called to suggest it. If I could unleash my inhibitions and run around like Henny Penny waiting for the next acorn to hit, I would. I am full of apprehension, but trying like hell to be rational and calm. Panic and conjecture change nothing

If you meditate, now would be a good time. Both Tara Brach and Kris Carr offer some free ones on their websites. Do something you love. A favorite book? Make some cookies? Go through old photos? Email friends, write a long letter to a loved one. Limit exposure to the news. Find a

Movie on Netflix.

We can only do something about what is actually happening. It is very difficult. Try to keep bringing yourself back to the present. I’m going to try to take my own advice

[nstonerocks in reply to nstonerocks]

Update: well doctor cancelled all non urgent visits. I will get results be phone. Ugh. Secretary said people are coming in sick. We all have to do the best we can.

[Red1246 in reply to nstonerocks]

Oh no. I too prefer hearing results in person. Please update us when you’ve had the call. Thinking of you and hoping for the very best. More hugs, Kathleen

[Hidden in reply to Red1246]

I would prefer getting them over the phone. I have been alone so long and have gone through various problems in life, as we all do, always by myself. It gives me time to calm down but then again I am one of those people that sleep well before a CT scan and sleep well the night before I am getting results and even when told it spread, the question is well now what. I don't get scared of any cancer thing and I never have had a person with me once, even when I had to have my lung biopsy. I don't come to home to any family waiting for me, not even a pet.

I think now I am so used to dealing with bad things alone in my life (because friends are just that friends, but family is family and a stronger bond for most.)

I think I would be more upset at this point bc the person with me who doesn't have cancer would be more scared than I would and I would wind up trying to comfort them so it gives me time to let it sink then and THEN tell others.

So we each have different ways to deal with things like this. The results are going to be the same whether told in person or whether on the phone and I would not want my onco to hug me but I also know that I would not be crying or upset. I would just ask what next.

But now we are going a scary time with this virus, which to me is 10x more scary than the cancer and right now doctors have to prepare themselves for what they expect, an influx of people possibly getting the virus so they have to put things in order of what is more important at this moment.

It just means that they cannot even afford to take chances of getting ill, because they are going to be needed which is why here in NY they are cancelling all non-urgent medical operations. So having a patient come in now just to give them the results is NOT URGENT in these times.

May God be with all of us (meaning the world) during these scary times.

[hopenowandtomorrow in reply to nstonerocks]

Wonderfully said @nstonerocks! None of us are in control. What can we control?

1. Our hygiene

2. Our exposure

3. Our environment at home (good heathy food, walks outdoors, lovey music, good books, good movies, avoiding non-stop social media & TV, etc.)

4. Our attitude. Fight to stay positive & grateful! Live fully one day at a time.

5. Encourage yourself & others.

Difficult times help all of us focus on what’s really important. We MBC patients are experts at this. We can help so many others with the strength we have developed. Strength from enduring great personal pain, suffering, hardship, fear, overcoming adversity, and always adjusting to the new normal.

Love & prayers to each of you ❤️🙏❤️!!!

[hopenowandtomorrow in reply to hopenowandtomorrow]

A quick story to share. My twin sister was living in CT when 911 occurred & she was overwhelmed with anxiety & fear (as most of us were). Her older Jewish friends exhibited amazing strength & shared encouraging words for her. They said, “we survived the Holocaust, we can survive anything.”

She saw some other ladies in the park. They came up to talk with her. Seeing that my sister was greatly distraught, they asked if they could pray with her. Kind, loving, encouraging Christian ladies.

I will never forget the impact both sets of women had on her. ❤️🙏❤️

[nstonerocks in reply to hopenowandtomorrow]

I worked in ER one mile north of the Towers. New Yorkers were incredibly kind and nurturing at that time. Complete strangers bonded by our shared calamity You are right about how mbc is a training ground for handling disasters.

[Red1246 in reply to hopenowandtomorrow]

Thank you for this lovely, positive message. Be well! Virtual hugs, Kathleen

[Red1246 in reply to nstonerocks]

Wonderful and kind response. Wish you all the best in hearing your results. Please update us.

Sending virtual hugs. 🌷

Kathleen

[Dancer1000 in reply to nstonerocks]

Yes we must make the best of this. I decided to look at this isolation with gratitude. My 11 yo son will be home too since school is now closed until 4/20. He hated his school so he isn't so busted up anyway. We are doing homeschooling and after one try yesterday its going well and he is happier. We then watch something on Netflix and/or he gets to play a video game with his bestfriend virtually. I am thankful that we have a good amount of time together now because my husband and I were always working. We bought a ton of food and just are hunkered down. My husband is a musician and unfortunately 90% of his gigs are cancelled. We are both self employed and now aren't working. No clue where the money is going to come BUT I am still here and as long as I can get my chemo treatments I am not going to complain. I just need to stay alive. I wear my mask every time I leave the house and will wear my gloves now too. I am going to assume they cancelled all non "active" treatment appointments like NYU did.

[nstonerocks in reply to Dancer1000]

I think that’s a safe assumption. My doctor was very adamant how scary this was. I too will wear a mask and gloves. Wish NYU had a satellite in NJ. We have to hunker down as you say and make the best of it. Be well!

[13plus in reply to nstonerocks]

What beautiful encouraging words you wrote here . Thank you so much. I needed that. I chuckled at you needing to heed your own advice. That sounds a lot like me! I’m always trying to encourage people how to keep healthy and fit but I’ve spent the last few days reading all the updates on my phone and barely getting off my behind!

I have to snap out of it and get off!

Which is why I’m here this morning instead so it was timely to read your words. XX

[nstonerocks in reply to 13plus]

Yep. Now that I got my not very good results I am really going to struggle to take my own advice Stay safe!💕

[13plus in reply to nstonerocks]

I looked up the meditation recos, thanks! I am going to dig deeper into those. Tara has a lovely and soothing voice

[nstonerocks in reply to 13plus]

Yes and sometimes she’ll have a free mini course. If I get emails about any I’ll post them. If you sign up for her emails you’ll probably get notified. She also has some books out. Glad you looked into it

[Red71]

The best thing we can do is isolate ourselves as much as possible so that we don’t catch this virus. For me that means just seeing my husband, and maybe one friend that I will see outdoors when we walk together. My kids and grandkids are off limits, we will go to the grocery store once a week or less, not daily! If we forgot something we will do without. If we have to do this until summer arrives(here that isn’t until July), that is a short period when I think back to how long I was out of commission when I was first diagnosed because of extreme pain of back lesions, about 6 months. If we do a good job of isolating ourselves, then we have a much lower chance of catching this virus at the height of the process. That will be the period when there might not be enough respirators. So we need to work hard at flattening the curve and convincing others to do likewise. There are many people who don’t understand that the more people you have contact with, even if they might appear healthy, the more chance you have of catching this disease and/or passing it on to others.

Don’t panic, just figure out what you need to do to stay healthy and do it! A sense of purpose helps. Otherwise you feel like you are spinning without a goal. I’m going to use my solitary time to spend more time quilting for my grandkids. I haven’t done any this past year so this is getting me back into it.

Elaine

[Red1246 in reply to Red71]

I love your positive attitude! And you’re so right.

Have fun quilting. It’s a good time to take up a craft - I might place an online order and do the same. 😊 Thanks got the idea.

Sending virtual hugs,

Kathleen

[Hidden in reply to Red71]

Gov. Cuomo (another breaking news story) used the term "flattening the curve" several times last night and again today which means medical has to right now. make decisions, in matter of importance so having people just come to the cancer center or hospital is not urgent if they can do over the phone. Not only for us, but also for them as they realize they will need the beds and doctors for the virus which right now is more urgent than any other medical condition that will not kill those who are not in great health right away vs. this virus.

[Hidden]

Hi,

I can understand your panic. We are living in uncertain times right now.

I had my zoladex injection first thing this morning. As soon as I walked into the doctor's surgery I was surprised at all the changes. I could not check-in electronically, as the screen was turned off, so had to do so in person with the receptionist. Then I noticed a sign saying patients needed to keep their distance from the receptionist. When I went to grab a magasine to read while I was waiting I noticed they had all been removed.

When it was my turn to be seen my GP asked if I had a fever or cough. I thought he was joking, but he was serious. He said the surgery is stretched, as they are working at 50% capacity right now. He gave me some advice if I exhibit any symptoms and to stay tuned to weekly updates the surgery is putting on a local Facebook group for our town. I was alarmed when he said that I am likely to develop the virus, as 80% of the British population is expected to be affected. I really hope not! The cancer hasn't killed me yet, so I don't want this as well. I asked if future treatments could be affected and he said yes. My next zoladex injection is scheduled for 14th April, but he said it will be cancelled if I am ill. If I'm well the morning of my appointment I have been asked to call the surgery to confirm I am still coming in.

On top of all that, my local pharmacy had been closed since yesterday. I heard the receptionist telling a patient to knock on the door and they should still be able to dispense prescriptions. So I can really understand your concerns. As cancer patients we may well be affected, but hopefully we won't infected.

Oh and my niece and nephew from America are now trapped here in the UK. They were stranded in Egypt and were hoping they would be able to fly back to Colorado, but their flight got cancelled and due to travel restrictions we can't travel down to London to see them or risk having them come up to stay with us. This whole thing is a nightmare!

But we should still try to be positive! Sorry if my message sounds negative. I'm just letting off steam. I'm sure we will all get through this stronger than ever before.

Sophie ❤

[Hidden in reply to Hidden]

I was terrified the pharmacy would close but its a small family owned pharmacy and so far they said they would NOT be closing any time soon but I wonder if there will be a point where they are unable to get certain meds. But yesterday, I went and picked up five rxs at once and feel better knowing I have all in the house that I need for now.

[Hidden in reply to Hidden]

My 60 year old friend's daughter lives with her. It is only the two of them. Her daughter works for Apple in NY at Grand Central Station. Apple closed that store, with many others, as that is one of the busiest in NY and if you live in NY, you know how GCS is. They have her daughter staying home from all for the next three weeks as they "deep clean" the major NY Apple store in NY.

My friend told me about a month ago, her daughter came down with the "flu." She did not go to a doctor, but used over the counter medications and stayed in bed. On the fourth day she went back to work.

My friend who works in a hospital said a doctor told her that more than likely her daughter had the coronva virus but for those in good health and who never smoked, they can have the virus and not even be aware of it and they may feel sick and then it resolves itself. So he believes her daughter had the coronva virus but bc she was in good health, she basically felt like she had the flu and is now over it.

My friend who is 60 (same age as me) works in a hospital. She lost her job during recession and had to take this job and now has been there for 8 years. She is small and petite my friend. She works in the maintenance dept. She has to clean all the patient's rooms, scrub and mop their bathrooms and change the sheets when a patient leaves before a new patient arrives.

She does not get paid much money NOR does she had good medical. Hers is not a job she can do from home obviously and GET PAID. She said the only change the hospital made (and she is grateful for it) is that it used to be a 24/7 visiting hospital and that made her job harder because she has to try and clean when there are fewer people in the room. So now because of this virus, they have limited patients to two visits during a specific time period so my friend said that makes her job easier.

I ask if she fears going to work and she said no. They have given them SPECIAL masks and gloves and my friend feels fine.

How scary would it be to have that type of job now with this virus going on. But my friend said I cannot NOT go in if I do not feel sick. She said she worries about the patients and that if everyone in her dept. started calling in from fear rather than from actually feeling ill, it would be a disaster.

So I admire her for doing a job that even without the virus going around, is a back-breaking, thankless job and even thought it is a hospital, she has lousy medical benefits and vacation.

The ramifications from this virus, besides the obvious, are ones that will be felt years from now. Broadway plays not playing, all those people are of work, all the NY restaurants that catered to the theater guests, all now closed and all those people are out of work. People are not going to movies, concerts, any place where is are large groups, so now all those people out of work on top of none of them getting paid when not working and losing their only source of income.

Closing NY public schools where the one my friend teaches at is in a low-income neighborhood and these kids get free breakfast and lunch. They now will probably go back to only have one meal per day.

My friend is expected to be teaching via online. She teaches social studies for 5th and 6th graders. Many of them did not even have computers or laptops at home and now these primarily single parent households cannot go to their hourly jobs bc they have no one to watch their kids. Many of them work as home aides and now the elderly who have home aides will not have anybody coming to assist them with things we take for granted.

The mayor and gov. of NY have both said that in a few weeks, there will be thousands of people (low income primarily) that will have no money to even go food shopping.

Many stores that are now closed will not be able to recover and will never open again. So besides the obvious, this virus is causing even people who are not yet sick or have any illnesses severe financial and other aspects.

The poor children who may have gotten excited will now start to experience fear bc they will wonder why they are not going back to school for so long and why cant they play with their friends and they will be start to get scared if they see the adults are in such fear.

All we can do now is pray. Some things are out of our control and this is one but NY and other states are trying their hardest. So everyone is affected by this. Does not matter if you are rich vs poor.

There are probably many people walking around with the virus but are not even aware of it bc they feel no symptoms. Hopefully, in the next few weeks, they will have more virus test kits available, and it will provide people with a sense of calm.

In the time, that it took me to type this up, there have been now three BREAKING NEWS. I will turn off soon, bc I cannot hear any more about this virus for now. I need a mental break from it all.

[Dancer1000 in reply to Hidden]

My son's school is public and they are doing a grab and go breakfast and lunch for parents that want to pick it up for their kids.

[Hidden in reply to Dancer1000]

I heard of that a good idea. The bad thing is that our Mayor waited too long to close the schools and then did it last minute on a Sunday night giving single family households (of which my friend's school is many) having no one to care for their kids and having to stay home from their hourly jobs. He also stated that he believed in a couple of weeks many of these same families will no longer have any cash to even buy food.

And it not like you can let your kids go out and play. How do you explain this to kids without scaring them to death as the adults feel now.

But good to know at least that they will get their two meals. I saw a show once where a kid said he liked school bc they fed him breakfast and lunch bc when schools were closed, he only had one meal a day.

[hdhonda in reply to Dancer1000]

They are doing that in Panama City too. Some parents don't have transportation to pick it up. It is so sad that the U.S. was so late to respond. We needed 300,000,000 tests weeks ago. Blessings to all, Hannah

[Hidden in reply to hdhonda]

It is a low paying but back-breaking job and she is a tiny thing but she loves her job, she loves talking with the patients and even though many of my friends make so much more money as legal assistants and are allowed to work from home, her job does not allow that and she realizes how important her job is to the patients. They do have them wearing special masks and gloves. She is happy though that they cut the 24/7 visiting hours (can you believe that) to only two visitors a day and only for a short three hour visiting period.

[Hidden in reply to Hidden]

You're right that this virus is going to have far reaching consequences for many of us. It's already caused so much disruption to people's routines. Your friend who works in a hospital sounds like she is not appreciated for what she does, but I am sure she makes a real difference to patients and their families.

Sophie

[Stage4Gir]

Thanks Sophie, and let off as much steam as you need! Sometimes that's exactly why I come on this site to do that so that I can regroup and be positive again. Scary times indeed. Sigh. I have to go get my lung drained this Friday at the hospital and I am so fearful but needs to be done.

xo

Debbi

[Hidden in reply to Stage4Gir]

Thanks, Debbi! I'm feeling a lot better than I did because I just got off the phone to my sister-in-law and her son and daughter-in-law have managed to leave the UK. They could not fly straight to Denver, but they did get on a flight to Chicago. She said that internal flights have not yet been cancelled, so I am hoping they will be able to get a connecting flight back to Denver once they land. That's a real weight off my mind! I couldn't believe our niece and nephew were so close, but we were unable to see them.

Sophie

[Hidden]

I heard yesterday on news that Italy was telling the US to start early about shutting down all places, making people stay inside. They said they waited too long thus Italy became a hotbed for people catching it and have warned the US and other countries to do a shut down now and not wait as long as they did.

The people that have died have ALL had underlying medical issue, especially respiratory. I have not heard of one case where somebody has died that had no previous medical issues.

The Gov. of NY is on and again it seems like within two days they realized how serious it is and now everything is happening so quickly. The patients that Italy "let die" (for want of better words) are elderly people that have medical issues and they know no matter what they are try to do treat these people, the fact is it is too late already. Thus, they have to concentrate on those who are getting it and have a fighting chance.

I have not yet heard of one person dying in the US that was in good medical health and dying ONLY from getting this virus.

My friends that are healthy and do not have cancer or any other medical issues are terrified and are staying at home. Almost every one of my friends no longer have to go to City and work. All large law firms and companies are realizing that they cannot expect staff to come in so now have people at home.

I think within a few weeks, with more testing kits available, we will be tested.

Gov. is announcing more cases are growing every day. I do NOT think at all that people with cancer or MS or ALS or other conditions are going to be thrown to the curb. We have to remember people with cancer are NOT the only ones at risk. We are just part of a group of people that have more to worry about if they catch the virus.

Italy advised the US that they waited too long to shut down restaurants, isolate people, etc.

Italy had not done all this right away (they did not nor did the rest of the world realize how quickly it was going to spread and they are overwhelmed so I do not think they are seeing Oh she has cancer, we may as well do nothing and let her die.

This "virus panic" is worse, in my thoughts, then getting news that the cancer has spread.

I think Italy is seeing that there are some patients that no matter what they attempt to do are going to die. There is a shortage of beds and doctors and staff. So they are attempting to save those who have a better chance of surviving this virus, no matter if they have cancer or some other disease.

With our cancer, even if it spreads there is more treatment options available. With this virus, they do not have a vaccine or a clear plan of treatment that works. They are already in the works for cancelling non-emergency surgeries such as hip or knee replacements bc they are aware they may need more beds and staff for those who get the virus and who like us will need immediate care thus we are much more ready and have things in place than Italy had.

Hard to not worry, of course, every day new things are coming out but I do not think your fear will happen. You have to look at the whole situation and the difference in how Italy did not react quickly at first and how US is now acting much more promptly and putting measures in place sooner rather than later.

So I have made the decision that I am not going to my appt. on Thursday for the injections and blood work. I now do not want to chance it. I feel like I have a better chance if my cancer spread and new treatment had to be started, than I do if I get the virus. I live alone (and for once that seems like a plus). So you have to look at the whole picture in entirety, not just one piece of information.

It is like in times of war and they can only bring some wounded soldiers out of the fighting fields. The medics look and realize that some of them, no matter what the medics try to do for them, they are going to die from their wounds. So since they can only carry so many soldiers off the battlefields, they take the ones that have a better chance, even if smaller.

They can quickly determine or have to quickly determine which soldiers may have a better chance and realize that some of them soliders their wounds are so severe that they will not make it, no matter what and they have to make this decision in seconds.

Here in NY, it won't be like that. They won't have seconds to decide. It's about trying to calm ourselves down a bit and realize the reality vs. our fear.

Hugs to you.