My Husband, My Life, My Love, My Family, My Cancer
Comments
-
BevJen and Candy, My DH said just that last night. Maybe we should get it over with and just go out and let ourselves be infected. I agree, the key is to not get it where we have to be hospitalized or worse. He wasn’t completely serious but the paranoia of germs now and the warnings of it not even at its peak yet are hard to handle mentally. I am not even considering that, He has asthma and I have lowered immunity so we’ll just keep staying home. We’ve debated which of us should be the grocery shopper next week?!
Mara, I can feel your sadness. I wish we could physically be there for each other. Wouldn't it be great if a bunch of us could meet up for lunch? 😊 We can dream, I guess.
Hello to all. 🌸🌺🌸
0 -
Another rainy day. Can’t even walk. Geeze this just plain sucks out loud. I mean I still can’t even believe I have MBC and now this I have to let soak into my Noggin. I am used to being alone. But even though I have people in my House, I still feel like I’m being held somehow. My state keeps growing as well. They are saying they need to start enforcing social distancing. Oh really? Now you think so? I just wish I knew how I would respond should I get it? The flu kicked my ever lovin rear end. It’s very scary....
0 -
Good morning 🙂
I’m feeling like some of you too, I almost want Covid so I can recover (hopefully) and be done with all the caution and what if’s. It’s just not knowing what it would do that keeps me very concerned.
0 -
Well, my family surprised me. They are going to take me out shopping for supplies. They may have seen my facebook post that instacart is swamped by orders. I have decided to wear my mask for their protection more than mine, maybe if more of us could make masks, it would limit spread of droplets. I know it isn't effective enough to prevent disease to myself but it sure would protect others from being contaminated by me.
I don't mean surgical masks but the ones they are showing on youtube. If we can contain our droplets, less people would be possibly infected. Save the surgical kind for the people on the front lines in health care.
0 -
I wish they could Be thanked some how. There really is no way to thank them. They are so putting themselves at risk. I hope they power through and are okay. Brave men and women, in my opinion. They not only risks themselves, but their own families. They are heroic (meaning the health care people, Fire, police, volunteers etc)
0 -
Where I live Vancouver, BC Canada, the BC chief Medical Officer reported yesterday that they are seeing encouraging trends that we have slowed the spread here, that social distancing is working. 792 cases, 16 people have died here. We are 2 weeks into it. Doesn’t mean we stop doing it, means less cases will flood the ER so we are being asked to double down even more now. People are staying home, streets are full of parked cars, grocery stores are limiting numbers, businesses are closed. Until we slow the spread, I don’t think there’s any point in talking about how long we do this....
I too miss seeing and being part of my grandkids and kids lives. I had a melt down at the MO visit this week....time is even more precious when you have MBC. She said WBC and RBC numbers and said that my immune system is normal, that even if I were to get virus, I may have a good chance of fighting it off. I’ll take her words on face value. Comforting. Some days I get really scared about how we will live in the future...anticipatory grief lurks about what we have lost and might los. I don’t dare think too far ahead of the future, let’s get through next week and slow the spread of this virus. It needs hosts/people to infect to survive.
I get my information from reliable sources (CBC mainly...our media isn’t as politicized as the US) The Guardian UK online newspaper app is excellent if you want international news including US.
Be well
0 -
Well, I was surprised and pleased. My SIL asked if I needed to do some grocery shopping and I jumped at the chance. They drove me to a couple of places and a fast food place. I was nice to see them, the grocery store had good spacing for distancing in the store, security guard keep track of how many were in there. I forgot the rice I bought but that is OK and am not going to bother them about it. Got essentials and extra laundry stuff as people are starting to snap that stuff up too.
It was nice to see them in person and I wore my mask to protect them and anyone working.
It may have come about because the grocery delivery service is overwhelmed and not enough drivers here. Not sure how your instacart is going but mine does not even let you order anything.
0 -
Mel - I am just about to start the first new episode of Ozark! That wait felt forever, so glad this has come back on just when we need it.
Re: covid anxiety - this is why getting that antibody test is critical here. If folks can test at home like a pregnancy test and find out in 15 minutes if they've had it or are a carrier or whatever and have some level of immunity, I think that would go a lot towards relieving general anxiety, help people back to work, and enable those who are asymptomatic to take appropriate steps. Let's hope the powers that are able can come up with something soon.
Also - I read a story today of a 103 yr old Italian woman who recovered out of ICU. They took a blood sample from her because she was alive at the time of the Spanish Flu. Isn't that crazy to contemplate? She didnt even have any family as her only son passed many years before.
0 -
For those who want a mask that is safer or one to donate to healthcare places that are short, here is a video that explains how to make them with a hepa filter from vacuum bags of all things.
https://www.youtube.com/watch?v=W6d3twpHwis
It would probably be good to make sure if using hepa filters to make a pocket you can slip it into before washing. Interfacing may also be a good layer to include as well.
0 -
I'm self isolating from everyone except husband & our 2 adult kids who live here. Husband runs minimal errands, most things are delivered or curbside pickup. My parents were my drivers/companions for tests and blood transfusions in Feb but we no longer see them. Social distancing means 2m away from anyone you're not living with so I can't get into a car safely with them. I have weekly appt+ lab one day and chemo the next. I have to go alone now - no people accompanying people allowed. Regular pts at my cancer center are doing telemedicine Dr visits before chemo and only having to go for blood work and chemo. But the trial I'm in requires face to face - tho I guess that might change.
Fwiw, my healthcare worker contacts are pretty much all signing DNI/DNR advance directives. A respiratory therapist said the journals were indicating 3-14% survival rate if you were on a ventilator. Hospitalization with oxygen masks or tents, yes, maybe worth trying (tho I have a 6cm lung tumor so probably not for me ..) but they're saying they'd say no to intubation & vent.
Oh also I'm sad because after my very first taxol and immunotherapy treatment my liver values went way out of whack and so i already have complications & I'm *already* on a reduced dose taxol
Hemoglobin also falling again so I'm tired again and feeling useless. I suddenly feel like either a virus or liver failure will take me quicker than I expected
0 -
Moth I am sorry that you are having to reduce your dosage and that your so tired from low hemoglobin. I hope your numbers go back up with the reduced dose soon and that you feel better soon.
0 -
I also have an advanced directive that would prevent me from going on a ventilator and a DNR as well. If my heart stops for whatever reason, be it cancer or something else, I do NOT want to be brought back. Family is clear on my wishes as well.
0 -
fun song below done to the tune of su·per·ca·li·fra·gil·is·tic·ex·pi·a·li·do·cious
0 -
I think we all feel very vulnerable about now. I hope you start feeling stronger. I just want this corona to go a gona
0 -
Waving hello to everyone. Surviving so far, but this sure is creepy.
0 -
I agree that it is very creepy. Where I am from, we now have a limit of 5 people in a group allowed at anytime. I would imagine families in same house exempt of course and also my province is fining people 100,000 if they try to profiteer from stuff needed like medical masks, alcohol or toilet paper. I think that is good to hear.
0 -
There should definite no gouging. I hope the medical People are doing ok getting the items they need. They are on the front lines!
MJH~Hello darling good to see you. It really is creepy. I’m going stir crazy!
0 -
the first Ozark was awesome ! Sondra! So glad it’s back ...
0 -
Hi from Spain. All fine here. Our area not greatly affected, but all staying indoors. Take care and stay safe everyone. Hi Mary Jane, good to see you here x
0 -
Shetland.... My oncologist also told me that I'm immunocompromised and at severe risk if exposed to covid-19.
I work in a hospital and she said that I should not be involved with any covid-19 patients at all. She also said if there's community spread I should not work at all. Has anyone else been told anything like this? Are you working or on leave or something else?
I think I cross posted as well
0 -
Minnie~Hi honey!! I was just asking about you a few pages back. Always thinking of you and hope you’re doing well. I’m thrilled to hear your area is not all that greatly effected by this. That’s music to my ears ! my state hugs NYC on one border so needless to say it’s a trickledown effect eventually. It’s like bad air over the North east and coasts. USA is the most traveled country so makes sense.
0 -
It helps me to keep in mind (as Sondra mentioned above) that eventually there will be people who have had covid-19, maybe even without being aware of it, and so will likely have immunity. Once we have an antibody test to tell us this, these people can safely go back to work, or even hang out with those of us still isolating. I wish I could know if my fever a few weeks ago was covid-19! If it was then I would feel safer and I could visit my poor mom.
Bwahaha! Like a drug dealer I got another relative started on watching Downton Abbey since she is staying home. I got a DVD of the movie for Christmas and have been saving it for a party. But now, I will watch it. (No spoilers, please!)
Moth, keep in mind that the trials that determine dose typically look for the highest tolerated dose, not the lowest effective dose. So try not to worry about reducing.
Nice to see you, Mary Jane!
0 -
MJHjan Minnie good to see you two.
I think it’s clear with covid19 that there are people who are not significantly affected that are carriers. My friends son and his wife were quarantined for 2 weeks. She had slight symptoms- a stewardess so she was tested and tested positive. They have a 3 month old who was sent to live with her mom for 2 weeks. Her husband tow truck driver never had any symptoms and tested positive too. They were busy at work and spreading it unknowingly. SondraF I agree that knowing if you have antibody or whatever would greatly reduce general anxiety.
I hope you’re all well. This is my week off ibrance and I still feel depleted. Mel I took a few extra days off ibrance just felt like I needed to feel a little stronger. So many months of low blood counts and weakness. I hope you’re doing well holding down your borders and not letting NYorkers in.
Dutch Chris I’m not working so I don’t know what the protocols are for medical staff. I wish you could just not go at all but that’s probably not an option.
My son works at a laundromat and is considered essential employee. Now his boss wants him to let people in to wash but no waiting in laundromat. Oh well fight the people or coronavirus or both.
Mara good to see you’re still keeping your spirits high. I juiced veggies this morning and then made muffins with the pulverized carrots squash apples and strawberries.
Shetland pony I’ll be trying downtown abbey as I think we’ve watched or fallen asleep to everything on netflix.
Moth I didn’t sign advance directive yet. I didn’t know the survival rate was so low on a ventilator. I would normally not want to be resuscitated but with covid19 it seems that’s the only chance you have is to be on ventilator. I did have taxol-only one treatment because I had anaphylactic shock reaction to it. It’s a very strong chemo and kicks cancers butt. Just making it through one cycle is good. The side effects are formidable. Sending you gentle hugs and Taxol still can be working while the next treatment gets figured out. I’m sorry you’re not feeling well.
Pots good to see you and I ditto missing the grandchildren. FaceTiming and stuff
Candy Philly Mae Boo boo waving hello
Take care all
Tany
0 -
Hi from New York! I live upstate so our cases reflect other parts of the country but today we are on travel ban along with CT and NJ. I wasn't going anywhere anyway. I have not been anywhere for over two weeks but I'm struggling a bit with anxiety over the virus. I did a directive form the last time I was in the hospital. If you have not done this, you can print one out online from your state health dept. Initially I did a complete DNR in December when I was in the hospital for whatever respiratory infection I had that was initially thought to be pneumonia. After I went home I realized I wanted more more flexibility with the DNR and the form allows for making these choices given the circumstance as a third choice. Our former NYS Senator (63 yrs old) is on a ventilator for the last week. We know them - his wife reported that symptoms were really sort of moderate - no fever. A week later he was on the vent and is not expected to live.
I have an appt with RO on Tuesday morning to start rads to pelvis. I am considering not doing rads until a later date. I have JUST gotten Afinitor diarrhea resolved, and do not look forward to spending more time with this OR going to the hospital for diarrhea. I don't even want to go to the appointment or the cancer center every day for rads. MO and PCP appts are all televisits but this one will be in-person. Sh*t. I don't want to go but I will go and hear the details. MO asked for this rad to be done in January but I couldn't get an appointment until March 31. So I am having a dilemna in my mind about this. I'm stable on Afinitor for the moment but I had one new spot on my pelvis
0 -
Moomala - how many rads sessions and to where? Could they perhaps do 5 sessions rather than 10? I was ok with 5 to the sacrum and only two or three episodes of D (an episode being multiple times over the morning until Immodium kicked in). I guess perhaps find out if there is a bare minimum they could do rather than perhaps the 'recommended' amount?
Having a rough day today with all the general confusion and anxiety noise on top of the usual living with cancer bs. I know to manage the uncertain you can only take things a day at a time and make sure not to think too much of the future or the past. Or to manage what you have control over, and let the rest go. Probably time to stop reading the news for a while and give it all a break for a bit.
Tonight I went for a walk and since it was empty I went up on Tower Bridge to take some photos of the city. A man walked past on the other side of the bridge wearing yellow galoshes, a beige full body raincoat with the hood up and a military grade gas mask. Sort of like Philly's screamer about the end of the world - this was too surreal! I totally took a photo because no one would ever believe this get up. I wondered if maybe he was in the 'shielded' group who are required to stay strictly at home for 12 weeks and this was his way to at least get out and move around a bit.
0 -
about the ventilator survival rates - I want to clarify that the data is still developing. The 3-14% was i believe from Chinese and early Italian data (published in Lancet a couple weeks ago)
Just saw UK data showing 34% get weaned and step down to critical care ward.( Doesn't mean they survive of course) https://t.co/oeK8PC81wB?amp=1
Also, the protocols are changing. I understand that now they're ventilating quicker rather than gradually going up through the respiratory therapy steps. Apparently this is yielding better outcomes.
Anyway. Many unknowns but bottom line is vent is not a miracle esp as pt gets older and/or has other conditions
0 -
I gotta tell you, I am starting to realize I want things to go back to normal. I can feel the tension rising in the household at times. Everyone seems drained and exhausted and filled with uncertainty, all bubbling to the surface. But sometimes people can just plain hurt your feelings. One thing I've learned is I have limits to what I can do. Some days are better than others. I don't hop to take care of things like I used to be able to. I start things and stop because I get tired and need to take a break. I tend to have a few things started at one time. I am not afraid of a little clutter. Some I am seeing do not like it. I guess I'll have to try to do better. I'm set in my ways. I don't think even covid can change that. Sometimes people just plain are stuck together and frustrations arise.
0 -
My housework has gone by the wayside. I eat good meals still and take care of the cats needs. I did spend the day washing blankets which was overly time consuming. The other parts of the day involved a lot of napping. Not voluntary, just falling asleep while watching things. Time is shooting by.
My brother did drop of a turkey and stuffing dinner which I appreciate. I did not go out today, but may go for a walk tomorrow.
0 -
I am feeling drained today, no idea why. After I get through this call at 3 I am totally taking a nap. I did spend a lot of time cooking this weekend, so perhaps thats part of the problem, and my hip exercises last night which can take a day to adjust. Was meant to hit the hospital early this morning to pick up those pills but between a minor work crisis and just feeling blah I put it off to tomorrow first thing.
Yeah, there's a pile of dishes in the sink and I need to freeze some of these pinto beans I cooked last night, but I also don't need to cook a damn thing until Thursday at the earliest, and thats just to use up some leeks and potatoes! So long as the cats are shoveled out a few times a day and the trash goes out when its gross thats all I care about.
0 -
social distancing has been now moved to April 30. I’m going to go nuts
0
