Is anyone else still having to isolate? - YouLookFab Forum

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Is anyone else still having to isolate?

Peri

Veteran

My husband has been through chemo for Lymphoma. Thankfully he is now doing great and his 6 month check showed nothing worrisome. He's feeling well and the worst is behind us.

But...the vaccine is showing poor results with blood cancer chemo patients, especially linked to one particular drug which of course was in his cocktail. Without a real science understanding, in layman's terms, they spent 6 months killing off his B cells and the vaccine works on B cells. He's had the booster too but still tests as having no protection. Double whammy because he's also still immune compromised.

So, while I'm hearing so much talk about the world getting back to normal, and things opening up, etc, they sure aren't for us. We still have to hide out and be super careful, because if I got exposed and brought it home to him that could be very bad.

Is anyone else in my boat? I'm feeling alone. Even my BFF will be sympathetic and then say "well, I'm off to get a manicure for this wedding I'm going to". Am I the only one still in mostly isolation?

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44 replies

Latest reply was from Runcarla

Anonymous

I am stillisolsting or wearing masks in spite of having my 2 vacinations. I have issues and the grandchildren and other small children have had no vaccinations, they ate too young. It helps that my grandson’s school regularly does Covid screening tests. I do not want to get this disease. Too many dear ones have died or have not yet, many moths later, fully recovered. I have kept some doctor appointments and still attending meetings via Zoom if that is an available option. If not I stat home. I am still waiting for booster shots to be available and plan to get one.

cjh

(website)

Veteran

Peri, I’m sorry for your difficult situation. I’m glad your husband has come through the chemo and is now doing well. Hopefully there will be better news soon that covid vaccinations all over are up enough to eliminate danger for those like him who don’t make the antibodies. I hope you have some good friends and family support.

In Illinois, we aren’t in isolation. We are healthy, socialize mainly with seniors who have all been vaccinated, and must wear masks indoors (state mandate). I avoid church (where some adults are not vaccinated!?!), indoor restaurants, and keep my distance at outdoor activities. My grandkids are too young for vaccinations and I have an elderly MIL to protect. With all those precautions we take and as good as that may sound, I do still feel isolated sometimes, but mostly my emotions run in a perilous roller coaster of anger, fear, despair, depression, uncertainty, anger again, a sliver of hope and optimism on occasion. It feels like our lives and the world are ruined. My friends almost all feel this way and it’s very wearing on everyone. None of this is meant to minimize or criticize your situation.

Anonymous

Nope, our state is pretending Covid doesn't exist. I've gone back to masking in public places, though not required if you're vax. About half the people do.

Kyle

Veteran

I’m a blood cancer patient too, and can so relate to this. I was diagnosed with leukemia just before the pandemic hit and had zero immune system. That part has gotten better, but we still need to be careful, even after my third vaccine. I will be on chemo for the rest of my life (18 pills a day) and that alone makes me vulnerable. Let’s just say it’s not exactly how I pictured my early retirement going, and it’s been hard. I’m also very angry, honestly, at the entire situation, and especially those who won’t get vaccinated. Their stubborn refusal is perpetuating this terrible situation and as a result, we may never be rid of Covid. It has to be hard on you, just as it is on my husband. I know he worries about me and is petrified of bringing something home that gets me sick. That said, I try hard to focus on the positive, as I know so many have it much worse than I do, and I am grateful to be alive. If it helps to know you are not alone in this situation, I am glad. Wishing you peace, happiness, and hopefully a bit more freedom sometime soon.

Runcarla

Veteran

DH and I no longer have to isolate, but life is far from what it was like pre C19. Vaxed and masked is the norm, and we do ‘risk assessments’ before venturing beyond a strict routine of regular home based activities. I alternate between being sad, depressed, frustrated, anxious about the situation, and feeling privileged and grateful regarding my personal life circumstances.

Helena

Veteran

Peri, I am so sorry you are dealing with this (Kyle too) - I can't imagine the extra burden that Covid is putting onto chemo patients. Sending love your way.

Glory

Veteran

I’m so sorry to read about your husbands battle. And Kyle- what a courageous battle you are fighting.
I am still isolating as well. I haven’t been in a store or venue since January 2020. I have had 2 clear scans since completing radiation and chemotherapy but I’m nervous. I just started physio yesterday for a broken ankle and it was stressful.

Suz

(website)

Veteran

Peri and Kyle, I'm so sorry to hear about this. It feels punishingly hard in what is already an awful situation for so many. No wonder you are feeling alone and frustrated. I know I would be awfully upset in your shoes.

I do not need to isolate and I'm back to working in the community (masked and fully vaxxed, of course) but even so, I do not feel life is back to "normal" and every week seems to bring a new loss or disappointment. I try not to dwell on the negative and do take solace from walking, gardening, biking, making art, talking with friends when I can. But some of those activities would be denied to you in this situation and the fewer options we have, the harder it is to maintain equilibrium and poise.

kkards

Veteran

Am I’m slowing getting back into the greater world, some of it because i have not choice, we are back to office 3 days a week next week…masks are required only for those not vaxed…like Runclara, i feel like i am running a mental risk assessment daily for everything outside my house…
that being said, i realize that my general good health, and office job has afforded me the opportunity to be picky and to get back out there, even in a limited way. I feel for you, your husband, Kyle and all others in a similar situation. I wish i had something comforting and encouraging to say.

Angie

(website)

Fashion Stylist

Peri, I am so very sorry. That's very stressful, and my heart goes out to you and hubs. You are right to be VERY careful. Sending healing thoughts to you both, as well as lots of luck, and positive energy. Hang in there.

Kyle, you are INCREDIBLE. Wishing you on going good health too.

To answer your question Peri, life is absolutely not back to normal. At all. There was hope after our vaccinations, which we enjoyed for a brief moment - then Delta hit the world. And my need to travel abroad twice to see very sick Dad, who passed away, was very stressful too. We are back to being masked almost everywhere, and also being very careful despite vaccination. We are safer - but not safe. And life is still restricted. You are not alone.

Sal

Veteran

Our largest city Auckland is still in a lockdown where many people work from home and most children are not at school. No shopping in store or eating in. We are out of ours now but still have restrictions at work and for activities. NZ has been slow on the vaccination front due to supply - I am double vaccinated as of two weeks ago, my husband and sons have had one shot.

There’s resentment growing here about our border restrictions and our lockdown - and varying opinions about how to open up again. There is no straightforward answer of course.

I feel for you Peri, Glory and Kyle. It is hard indeed and there is no easy answer. It must be exhausting making these decisions about activities all the time - and lonely too.

Sloper

Veteran

Peri and Kyle - I'm in a very similar boat.
Peri - glad to hear your husband is doing well. Kyle - I'm sending you big vibes and hugs.

I was diagnosed with leukemia (AML) a few years ago. Chemo and bone marrow transplant. So I have someone else's immune system (a most fabulous donor - more on that below). A common after effect is that the donor's immune system can attack me (the host). So I've been on immune-suppressant medications (and other meds) and will probably continue to be. Kyle - I hear you - retirement was not supposed to be like this!!

Because of this regimen, the first two Pfizer doses didn't work. I'm part of a COVID study by the Leukemia/Lymphoma Society and get periodic blood tests to check efficacy of vaccines. Just got 3rd vax yesterday and will have blood work in about 3 weeks - fingers majorly crossed.

So I've been in the house, except for doctor appointments, since March 2020. It really sucks for my husband (vaxxed)- he's concerned about me, so his outside activities are constrained, and his mom is in a nursing home. He hasn't seen her in person since early 2020 either. And now that visits are permitted (outside, 6 feet apart) - he hesitates to go because he doesn't want to bring some germ home to me. We don't even get outside meals delivered - just groceries. Mega guilt trips all around.

Fortunately, his company went almost all work-from-home last year, and they are letting him continue with that.

Anyway, I try to avoid too many stories about yoyo's who won't get vaccinated but will gladly take horse deworming medication (ivermectin) - not good for my blood pressure.

And I have to give a big shout out for Be The Match.org. They are a sort of clearinghouse for bone marrow and blood stem cell donors. My donor is a most fantastic young guy in the mid west whose mother encouraged him to join the registry (all it takes is a cheek swab) just a few months before it turned out that I needed a donor. And we were an excellent match. The registry especially needs people of color and mixed ancestry.
https://bethematch.org/

Cardiff girl

Veteran

Well l do not know how people who have conditions that mean they still have to isolate are coping.The situation in the UK is basically that the pandemic is over,vaccination is the way to so go get vaccinated and you will be ok but if you “choose” not to well that’s your lookout,no consideration at all for people who through no fault if there own can’t have the vaccine or haven’t responded well to it.So you are going to either have to isolate until when?Or accept that you are probably going to catch it because virtually no one is wearing a mask ,no social distancing and even if you have a positive case in your house you can still go out until you test positive by which time you have no doubt spread it far and wide.but then that is what the government wants “herd immunity “although no such thing exists with covid 19.The economy is king and if the3million people in this country who are still having to isolate never leave the house again or die well who cares as long as the share holders are happy.
l am sorry to rant but the way this pandemic has been mishandled in this country is in my opinion beyond shameful and it’s always the vulnerable that suffer the most .l continue to wear a mask and meet outside ,although of course this is now considered to be over zealous(!)and am cautious but at least l am not afraid to step outside my house as l do not have a serious illness, my heart goes out to those of you that do.

Sal

Veteran

There is growing narrative here about those people isolating who need to, whilst the rest of the population get on with their lives. It's pretty cruel to think that those people who need to isolate are happy with that.....

I am beginning to believe that our last summer was a golden one with no covid in the community and freedom...

Peri

Veteran

Thank you all so much for your support. I couldn't get back on earlier because I wanted to be able to reply, but I did read the responses as they came in. I surely don't wish similar circumstances on anyone but at the same time it helps to know I have some company. No one in my real life still has to be as restricted as I have been.

Kyle, Glory and Sloper, I'm sorry to hear you have been through it too. I think this is the main thing many people don't think about: cancer and cancer treatment is awful, both for the patient and their support person or team. And the pandemic has been awful for everyone. But the Venn diagram overlap area between the two is a truly sucky place. I think about if this had happened with no pandemic, my husband having cancer would be flat out all I could handle, but at least I wouldn't be prevented from lunch with friends or seeing movies or getting haircuts or any of the other things that might help me cope and stay sane. We should form a support group.

Sloper, my husband is in that study too. That is a bright spot, a really good resource. Unfortunately though, that's how we know the 3rd shot also had zero effect for him.

Joy, cjh, and Suntiger, I do wish it could be as simple as masks and distancing, but I don't feel secure enough to believe that is all I need to do. Maybe it is, but I have heard of so many breakthrough cases that I just can't operate that way. I really want to find out what they were doing that was risky! If all the breakthrough cases came from eating in restaurants or attending crowded indoor events with no masks, at least I'd be able to feel like I was being careful enough.

Helena, kkards and Suz, thank you.

Runcarla, yes about the risk assessments. I had to go the dentist to get a cracked tooth repaired. Not anything I could reasonably postpone, but had major anxiety about two people hovering over me for two hours while my mask was off. Necessary risk though. Haircuts, as much as I want one...unnecessary risk, can't do it. Every single thing has to be so studied and fraught, with no real happy answers.

Angie, I felt the same thing. We had about a two month window this summer that was post vaccine, numbers decreasing, and no knowledge yet of the problems with the vaccine and chemo patients. Just a tiny tease of "getting back to normal". Gone now.

Cardiff Girl and Sal, no possible answers on the political front but the US is surely not a good example of handling things greatly either. Actually Sal, I always heard NZ was the best example for all of us. I'm sorry to hear nerves are fraying there as well. Understandable though, people are people wherever we go.

Thank you all for your help, I really appreciate it.

Sloper

Veteran

Peri, Tyler and Glory - feel free to DM me anytime!

Even venting is helpful to decompress a bit.

Anonymous

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Janet

(website)

Veteran

Peri, Kyle, Glory, and Sloper — sending all the best thoughts your way!

My husband and I are somewhere in between lockdown and wide open mentality. We are fully vaxxed with no significant pre-existing conditions, so supposedly we are in the clear ourselves. We have gone to some outdoor events (baseball game, concert) and spent a week in NYC. Most of our restaurant visits have been outdoor dining and we have avoided crowded places. We prefer to mask up when entering stores even though it’s only mandated in certain places. Like Suntiger said, it’s about 50/50 here in terms of how many people wear masks, until you get into the cities (Baltimore and DC) where masking rates are much higher.

I just had to cancel plans to get together with my two oldest BFF’s because one of the high school age daughters of one of them was exposed to a friend who came down with Covid. The family chose to self-quarantine and we canceled our plans, mainly because my other BFF is a breast cancer surgeon and needs to stay away from Covid exposure to protect her patients. Just so happens that my friend with the teenage daughters works for Pfizer, so he knows the risks better than most, and we all operate on an abundance of caution.

My doctor friend and I did get together for a lovely outdoor lunch, and she vented a lot about how hard she is having to work to convince some of her patients to get vaccinated. People have been absorbing a lot of misinformation about the vaccines and it’s causing the medical community a hell of a lot of heartache and stress. She’s 56 and wants very badly to retire — she has arthritis in her fingers and a bad back, and quite frankly, she’s tired of the BS, but she cannot afford to retire. Anyone who thinks that doctors are making bucketfuls of money these days needs to take a closer look at the insurance companies.

I have a friend/former colleague who is undergoing treatment for multiple myeloma (which also took the life of the wife of my Pfizer-employee friend). She is still very much isolating and her family is being super careful. I also know people who have various respiratory and other issues who are still staying away from others. So I know many people who are still very much taking this seriously and not taking unnecessary risks.

Meanwhile, we have family members in Texas who refuse to consider getting vaccinated, despite the fact that they know many people who have died from the virus. It’s insane but they won’t be swayed. We have tried to persuade them to no avail. They’ve just accepted that it’s a thing they could catch and be killed by, and they’re ok with that.

Sorry, this turned into a long and rambling rant, but I’m so angry with people who don’t realize it’s not only just about themselves — it’s about shutting down the spread of the virus and protecting other people too — other people who are more vulnerable. Sometimes I really fear for humanity.

Ginkgo

Veteran

Yes, we are still isolating as my husband was diagnosed with bladder cancer six months ago; after a couple of rounds of surgeries and treatment he is now declared to be cancer free but is scheduled for another series of chemo treatments starting next week. Even though we're both vaccinated (he has also received the booster also) and we live in an area with a low number of cases, I'm afraid of contracting covid and bringing it home and that his treatment would be rescheduled/delayed as a result.

We both long to travel again and I want to wander the shops, while away the time in cafes and visit friends and family.

Peri

Veteran

Suntiger, thanks for the link. That's a great article.

Janet, yes, I'm angry about the anti-vaccers too. I really can't think about it much because stupid is even harder to cure than Covid and I can't take the stress of dwelling on it. If such people realized what their actions are doing to people like my husband and me I can't even believe they'd care because it's all about them.

Ginko, so sorry, and welcome to my support group.

Jules

Veteran

Life is definitely not back to normal for us and probably won't be this fall and winter. We took advantage of the short Canadian summer to continue to socialize and dine outdoors for the most part. My little nuclear family has turned a corner in that we will all be fully vaccinated this week (my youngest just became eligible in August), as are all of our close contacts. I am ok with our more limited life for the time being. My main concern is my mother. While fully vaccinated she does have COPD and I heard recently of a breakthrough covid case in a more elderly person with COPD. He unfortunately passed away, although his health was in decline before getting covid. The scary part is that his family, who were being reasonably cautious, cannot figure out where he caught it. So I am faced with wondering whether life will ever really "get back to normal" for my parents. My father is cautious to the point of paranoid and not suffering too much over it, but my mother would like to return to a more normal lifestyle. And in their late 70s they might not be able to "wait it out" the way I can in middle age.

Suz

(website)

Veteran

Thinking of all of you -- Glory, Sloper, Gingko, Kyle, Peri (and anyone else in this spot). It's so punishing. As you said, Peri -- in "normal" days a spouse with cancer or a cancer diagnosis would qualify you for some social support and at least acknowledgement that what you are going through is really tough. But now, this added burden of extreme isolation. Sounds like a support group could be a great thing.

Echo

Veteran

Oh, I am so sorry Peri, Kyle, Glory, Sloper, Ginko and others. Like Suntiger, my state is pretending covid doesn't exist; it is maddening and infuriating. I work in a school building where masks are not required (I am one of the minority who wears a mask all day, every day) and work with many science-deniers/anti-vaxxers. Considering we work in education, I find their attitudes especially horrifying, and as far as I am concerned they are putting children too young to be vaccinated at risk.

People don't seem to realize (or care?) that herd immunity through high rates of vaccination is the only thing that will keep the vulnerable safer. Ultimately, it is the only thing that will keep ANY of us safer, as the more bodies this virus goes through, the more opportunities it has to mutate.

My heart goes out to you. This was really an issue we should have all come together on. It's disheartening that safety and science and medicine have become political hot-button issues. If we can't come together in the face of a global pandemic, is there ANYTHING that can bring us together?

Runcarla

Veteran

As the rate of vaccination goes up (80.5 % of the Ontario provincial population are double vaxed) the number of folks testing positive is going down - even after a holiday weekend and the start of school at the beginning of the month. Media report that 3/4 of those who test positive and 3/4 or those who end up in hospital and in ICU’s are unvaccinated individuals. Since last Wednesday a vaccine passport has become a thing here - and I don’t mind one bit!

Laurie

Veteran

Peri, Kyle, Glory, Sloper, Ginko - my heart goes out to you. I am a long, long term survivor of lymphoma. I should look into that study and see if they are also testing people with a history of blood cancer. (Big supporter of LLS - I used to do their fund-raising events, both as a participant and as a speaker) I had not considered what riding out this pandemic would have been like when I was a patient. Pre-pandemic it would have been hard to fathom how one's stress level could go any higher than it is already with a diagnosis of cancer. This is how it goes higher.
My over-riding emotion most days is anger verging on fury about the situation we remain in, largely due to the resistance to vaccines and refusal to follow protocols/ appropriate behavior. I have nothing unique to add.

Sloper

Veteran

Laurie - you should definitely check out the study. I don't know all the criteria for each type of blood cancer, but the more participants the better. They did a webinar this morning to update everyone on the results of current studies and what's being planned. They've even got a study getting started for 4th doses.

Here's the original link for joining the patient registry:
https://www.ciitizen.com/LLSCO.....38;utm_med

Jenn

(website)

Veteran

My husband was diagnosed with cancer earlier this month and started active chemo yesterday, so we're having to rethink a lot about how we're approaching the outside world, and we're pulling back on some activities we were willing to risk before, when we were fully-vaccinated without any mitigating circumstances. It's a whole 'nother layer on top of the stress of the diagnosis and treatment. He was hospitalized for a few days last week for testing and observation, and because of COVID, I wasn't allowed in the building.

Peri

Veteran

Laurie, thank you. That "long, long term" did my heart good! Definitely check out the study. Maybe they want data on the long term. Right now they are saying the no-immunity response lasts about a year. More info is always good. And yes, cancer and pandemic at the same time has been a quick road to crazy town.

Sloper, my husband watched the webinar too. We are very intrigued about the monthly treatment idea. I hope that gains some traction.

Jenn, welcome to the support group. I'm so sorry you are having to join us. Every case is different but please message me if you want to. My husband finished chemo in March. He still sleeps like a teenager but mostly feels pretty good now. You are where I was one year ago.

Sloper

Veteran

Jenn - please message if you want. FYI I am a patient at City of Hope. Fortunately we have many good resources in the greater Los Angeles area.

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