I have stopped posting "humorous" jokes to lighten the mood in lieu of this virus. It is no longer funny at all and levity now seems disrespectful to those who have lost loved ones and those who will continue to lose loved ones. The numbers are staggering, but these are people.
Each number reflects somebody's mother, daughter, sister, aunt, cousin, friend, neighbor. It is hitting me now hard. I don't really fear for myself. I will not leave much behind and I have lived a happy good life compared to millions of others in this world.
NY is overwhelmed. We lost high numbers of PEOPLE in a few days. Besides the regular day to day people, now police officers and fire department personnel are getting sick and several have died.
The Gov. was right on point. It IS, getting worse every day. You wake up and want to hear some good news but it NEVER comes.
They are telling us we will know soon if it will be six more weeks in quarantine or SIX MORE MONTHS.
It started with one man in New Rochelle, NY who never traveled outside the country and within less than a month's time, this virus has overcome New York. We are being brought down to our knees. You can't digest the numbers and realize those numbers are people.
You realize that your cancer IS GOING to spread and quickly without treatment except for the pills but you will never know bc you wont be getting injections and certainly no CT scans.
SO IF YOU CITY OR COUNTRY IS TELLING YOU TO SELF-QUARANTINE, LISTEN.......and do it!!!!!!!!!
Now they are announcing on news that hospitals are ONLY taking virus patients and even then you have to already have severe respiratory problems.
My cancer center (I had an appt. tomorrow) said that they will only be allowing those who are getting intravenous chemo into the center and even from that I am sure they culled certain people (younger vs. older, etc.).
People like me with stage iv will NOT be getting our injections, blood work and CT scans for quite some time. I get it. They have limited resources so they can only treat a limited amount of people when they are down to 1/4 of staff. They have medical personnel that used to work in Cancer Center now working at the hospital.
So I guess they made the decision that it is better to continue to treat those who still have a chance of getting their cancer eradicated and let them continue treatment. It makes sense to me. You can only treat a limited amount of people, so treat those who have a chance of beating cancer. I am on the other side of the fence now.
My friends and myself are so so depressed. My pain will be increasing soon as I no longer have access to the pain specialist and will be running out. Weaning myself now and preparing for the pain to return.
Be thankful even though it is a horror to be stuck in an apt. like mine which every day seems the walls keep closing in, that your country is taking extreme measures now.
Ordering food is close to impossible. Workers are getting sick, stores are out of so many items. I am alone and for once that seems like a blessing. I am not worried sick out my children and feeding them or elderly parents who I can't get to.
People in other countries are seeing how the virus is crippling and devastating New York and are taking very strong measures to make sure it does not happen in the numbers we are experiencing.
I have said that I would rather die from the cancer than the virus and now that treatment will be stopped for as long as this virus is here, I expect my cancer, without injections, for God knows how long, will spread.
Pray, pray, pray. I "forget" every night when I am sleeping and for a very few minutes in the morning and then BOOM......reality hits me.
I pray for all of us. Going to take a break tomorrow from the board. Can't really discuss my cancer anymore since treatment is stopped.
OFFER HELP TO THOSE WHO LIVE ALONE AND/OR OR THE ELDERLY. And I pray it does NOT turn to other states in the US and other countries.
I know things are catastrophic in NYC but they still need to give you your cancer meds and they should give you a new prescription for your pain meds. Do you take Ibrance and letrozole or are you using different cancer meds ? Have you spoken with your oncologist directly ? Did he say not to come ? You go to a cancer centre so you should be allowed in to receive your medication. If they tell you no it is time to contact the media as they cannot ignore existing Illnesses. 😞
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I get my cancer meds (Verzenio) online. The Gov. has stated that they will not run out of medication and that pharmacies will be STAYING OPEN.
I live in US. We do not get our cancer meds for them. They just write the rxs and send them to the specialty pharmacy, and as in the past, they mail them out to us.
The rules have changed. I was sure I would not get my pain meds bc my pain specialist is not going to be there for the foreseeable future and unable to write any rxs because she was sent to the hospital where she is needed more.
I had emailed my onco and her physician's assistant wrote my prescription for 90 10 mg. of percocet and at the pharmacy (I called).
In normal times in NY you have to physically see the person before getting another rx but these are different times. The pharmacy even said I could pick it up five days before I am "legally due" to get it. Restrictions have changed.
So one less worry. Plus my onco is going to call me today via a phone visit. In the email I said even if I were allowed, I would not go. I feel safer home. She agreed via email that it would not make a big difference if I missed a month or two of injections versus the reality of catching the virus. She said it is the lesser of the two evils so I feel good about that.
In US, we do not get our cancer meds from the onco. I get mine, I order it online (they send me a reminder) and I got it a week ago via email PLUS I have an extra month that was given free to me while awaiting for Medicaid to be approved.
But she was able to get my pain meds rx and that is what I was worried about bc I thought you had to see a patient in person (which you did) but obviously bc of how bad it is here in NY, they (the Govt.) are restricting previous guidelines.
So I will just go without the injections for now and I am okay with that.
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I’m so happy you got things straightened out. ❤️
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That is great that you are able to get your pain medication . Take care .
Very thankful that you got all that taken care of & you can stay safely in your home ❤️🙏❤️. Take care of yourself & know you are being prayed for & virtually hugged!
I'm not in NY but I have friends who are (both with MBC and without) and I know it's crazy. I've spoken to a few folks who are navigating treatment while resources are focused on Covid. Depending on what drugs you need you may be able to speak directly to the pharmacy and get a refill. Or perhaps someone from the cancer center can do a telemedicine call with you to discuss. If you want someone to chat with just message me and I will call you and we can have a visit.
My onco is calling me today via a phone visit. She did write and send to my pharmacy for my next rx of percocets. The pharmacy has it. Tightened restrictions on opiods, etc. have been lightened due to the the virus.
But to me the telephone visit is really just a way for them to bill the insurance bc if I am not getting my injections and blood work, what is the point at long as she is sending my rx for my pain meds.
No pharmacies cannot just give you pills without an rx but they have lessened the requirement that the doctor has to physically see you in person.
Right now, this virus is more important than my cancer. We are losing so many people per die the numbers are hard to fathom.
What is there to talk about when my onco calls? Guess, what you still have stage iv cancer?
Hi aamkearns I know from listening to the news things are bad in New York! I feel though that from your post that you may be severely depressed and should contact your health care personal to get a Tele help set up. I don't feel they are choosing who lives and dies. I know if you listen to some of the news cast they are scaring people unnecessarily . Listen to the professionals that talk at Trumps Briefings They are telling you that yes this is bad because even the loss of one life is bad. Yet you should not panic just follow what they are telling you to do and you will be OK!! The ones that have died have either been infected before the social distancing went into effect or are people such as nurses doctors ems fire and police that are still out in the midst of things. Please calm down call your doctor and find out what they recommend you do. I do not want you to go with out your meds or pain meds when I think it's just a matter of knowing who to contact. PLEASE is there anyone on this sight or monitoring this sight that could help her get hold of the people there in New York that can get her the help she needs!!PLEASE!!!
I was actually more afraid because all of a sudden bc of my percocet use, I had (Sorry) impacted stools for close to three days. I felt so so sick. It was terrifying. I was in such pain that I could barely sit.
For two days, I was drinking olive oil, loads of water, chugging the liquid the pain dr. prescribed for constipation, taking almost 10 stool softeners. I was afraid to eat.
I was crying and in such pain and even more scared bc I knew there was nowhere to go.
I was getting sicker and sicker. I kept trying to go and it was not happening. I was sweating profusely. I had ran out of Metamucil (which I was taking every day) and that is why the opiate constipation had kicked in.
I felt like I was going to die. I tried everything. After three full days (and constantly trying so hard to pus to the point I was trying so hard and nothing was happening.
Finally, yesterday, it started. I was screaming in pain in my bathroom but what a relief but i was not fully done but I felt the hardest part. Later that night, again and I cried I felt such relief (I had stopped taking the percocet).
And then this morning (after two days of no percocets and NO FOOD bc I did not want anything else in my body), this morning, AGAIN and finally I am fully done.
I was terrified. The pain was horrible, I could not sleep and I was sweating so much and I felt like I would die from not going. I was terrified to eat food.
I prayed so hard to God. I could not believe this morning that I was not done. It is scary to realize how much was left inside me.
Stocking up on Metamucil the next time I go to pick up my prescriptions and taking less percocet than prescribed. You don't realize you have not gone for a few days.
It was scary, I was alone and was crying. It got so bad I could not even sit.
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Hi,
How are you feeling today? I hope you are no longer dealing with the constipation. Do you have any Epsom salts in the house? That can help as a mild laxative if you need it again in future. Hopefully you won't, but as a temporary measure it can help. It's so scary when you are constipated and in pain, but nothing is happening to ease the symptoms. I hope you are feeling better about things today. I know most of us live far apart from one another, but that does not mean we are not thinking of others on here and hoping for the best for them.
I found a number for you to call tell them what you are feeling and the fact you think you can't get your treatment or your medications I hope they can help you. It's free it's through United Health Care you don't have to belong to there company to call. The number is 1 866 342 6892
I’m worried about you. Please call the number justme153 has provided. You should still continue your treatments. I had to go by myself but I had a ct scan today at a hospital. Sending positive thoughts your way.
I live in US. We do not have NHS. NY is like a war zone. We are the worst in the world thus far and they are estimating that at least 16,000 will die in New York CITY alone, not just the state.
Hospitals are ONLY admitting virus patients and those who say got run over by a car. The Governors brother tested positive. He is home, not at hospital because he is not "sick enough" by the new rules.
He is living in his basement and he did a news show so he was continuing to do so from his basement. He was saying YOU DO NOT WANT TO CATCH THIS. He is in his late 30s and healthy. He said he was suffering going from extreme fever to shivering. He said he was shivering so hard he cracked his front tooth.
He said it is that bad but luckily his family (wife, kids) tested negative. But he said he had delusions from the high fever and it was scary and also the feeling of cut glass in this throat.
He does not qualify for hospital care. He has to go through it. so he is quaranting himself in the basement and this is our Gov.'s brother.
I cried when I read your post. I am so very sorry for what you are going through. It is the same for me. I have missed my injections (Faslodex and Xgeva) this month and maybe the next couple of months. The irony is the hospital is open and they are waiting for me but I live 200 kilometers from the hospital and we are on lockdown so I can’t get there. My Ibrance comes from Malaysia and thankfully my oncologist there has agreed to extend my prescription without blood work and a scan. However, I don’t know how long till the Ibrance arrives as it will have to be couriered here. All I can do is pray and hope that things work out for the best soon.
Try to at least get your pain meds. That’s what’s important at this point. When this is over, I am sure that there are other medications out there that we can take which will make us stable again. Please don’t give up. Please....
I am not. Yesterday was just tough bc the last three days (sorry again) I had impacted stool from the percocets. I live alone and I didn't even realize I was not going (I ran out of Metamucil).
Two and half days. I could not even sit. I was drinking olive oil, seven cups of coffee, taking 10 stool softeners and taking loads of the rx she gave me for constipation and NOTHING. I was in tears, I was feeling sicker and sicker. I could not deal with it. I was spending hours in the bathroom but nothing.
I was NOT eating at all. I had no appetite but I was more scared of putting any more food in me at all. I was drinking loads of water.
Finally, yesterday, I was basically crawling on my floor and felt so so sick and I knew there was no where for me to go.
And finally last night. It took about five hours and this morning (I stopped the percs obviously and started going through withdrawal.)
And again this morning. Scared feeling to realize how much was inside of me.
But I cried with relief and thanked God. It is scary when you are alone and in such pain and doing everything you can think of and nothing is happening.
I am being very careful and cutting down on my percs. It was because I had not been taking Metamucil which I had been taking every day with water.
Scary....but OMG...I cried like a baby when released and thank God. I thought I would die in my apt. from that. not the virus or the cancer.
I am so glad you are feeling better. Really glad. Prayers answered! I don’t know when things will improve but when they do, we will look back on this episode in our lives and say we survived it!
I’m sorry to hear your center is only continuing with iv chemo patients and you can’t get your treatments. But I want you to know not all cancer centers in NY are canceling treatments.
I, too, have bone mets but unlike your cancer center, my center is still providing treatments.
My center is in NYC at the Dubin Breast Center which is part of Mt. Sinai Hospital in the upper East Side. The Dubin faces the lovely central park. I’m actually heading to Mt. Sinai tomorrow (Thurs) for my 3 months CT/PT scans which was scheduled two weeks ago. And next Tues I go back to Dubin for my monthly labs followed by Faslodex and Xgeva shots. I would usually see my onc right after my lab and before my injections but because of COVID we’re doing a video call instead of seeing each other in person. I will call her as soon as I get home from the center. My onc and the Dubin breast center have no intentions of me missing my treatments. In fact they called today to remind me of my appts (as per usual) and advised me that companions are no longer allowed into the center due to their new COVID policy. Only patients can enter.
In your past posts I got the feeling you weren’t too happy with your care at your center in Brooklyn. Perhaps consider transferring to Dubin Breast Center? The center is modern and clean and the nurses and staff are great. They take most insurance and I believe medicare and medicade. My onc is smart and kind but a straight shooter. She really listens to me and is a big believer in having the best quality of life. Which means that if I were to ever be in a lot of pain from the cancer, I trust she would prescribe strong pain killers and not just give me some dinky Tylenol.
If you want to know more about my experience at the Dubin, please send me a message.
Thank you but even though they cancelled my visit (NY drug opiate restrictions have been lessened). She was able to send it into pharmacy. More than 1/4 of the medical staff,including my pain specialist) so are are unavailable for the "unforeseeable future."
I am self-quaranting. I am getting a phone call from my onco today. Quite frankly, if I was allowed to go to get my injections , I would not do so. I get medicaid free car service but I am more terrified of getting the virus. My mets are in my lungs and spine plus I was a smoker for years so if I miss injections for 2-5 months, I am okay with that.
Because I know that if I get the virus, I will not be coming out of that hospital. It is 10x for people with severe respiratory issues, and they are the ones not making it out.
So for now doing the self-quarantine and I live alone, Thank God.
A friend who had a mask and gloves drove in from SI and called me when she was downstairs and back in her car and had bought me several bags of groceries. I live in a residential area and I do not drive, NOR do I have any friends that still live in Brooklyn.
I am not scare of going to the cancer center. More of the car service there and back and getting the virus from an unclear car service.
I was more scared yesterday because of the issue I wrote above. I was afraid I would die from that and it was scary, and painful and I felt sick as a dog.
I feel relief today but I do not want to leave my apt. now. I am less scared of not getting my injections than I am of catching this virus.
Anne Marie -
I'm so incredibly sorry for what you're dealing with there...It's unimaginable, yet it's your reality, there in NYC.
My thoughts are with you - in fact, I hadn't checked the site yesterday but woke up worried about you...(heart).
Please keep posting here so we know how you’re doing. It sounds so frightening.
But at least you got your medications and are meeting with your oncologist by phone. Even if you have nothing much to discuss a check in is a good thing
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