What would you do??: My wife's niece who lives... - CLL Support

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What would you do??

rcusher profile image
37 Replies

My wife's niece who lives in the northern part of Alberta is coming too Ontario for the months of August and September. She has asked to stay with us as we are the closest to where her treatment will be.

It will be just her and her husband. My quandary is that both have never had any covid vaccinations. Our house has a separate bed area but they would have to use our kitchen and shower facility, only 2 piece available for them. They will have to use public transit each day as they won't have a car.

I am currently on the Bruin-321 trial and am on my 3rd cycle of Pirtobrutinib, after a very rough time with Idelalisib + Rituximab infusions.

They are not financially able to stay in hotels etc. and no other relatives close by. I don't know what I am feeling.

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rcusher
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37 Replies
lankisterguy profile image
lankisterguyVolunteer

Tell them to get the COVID vaccines to protect you from serious life threatening infections and then they will be welcome to stay with you .

lindalou5 profile image
lindalou5 in reply to lankisterguy

I have a few close family members and friends who have had all their vaccines and yet they got Covid and I was lucky not to have caught it from them. I always make my daughter and her family take a test when they come to visit. Nothing is gaurenteed.

Sepsur profile image
Sepsur in reply to lindalou5

The vaccines ( like flu vaccine) don’t have 100% efficacy, what they improve is that if you get infected it will not be the full onslaught and end with you in ICU.

lindalou5 profile image
lindalou5 in reply to Sepsur

My point was that we cannot control what other people do outside of our homes.. not about the efficacy of the vaccines. If you get sick, you have the ability to spread the disease whether or not you were vaccinated. And my sister and my daughter were very sick for two weeks..even tho they had all vaccines up to date. Once again, you cannot always control things, just prepare and pray and hope you get through OK.

SofiaDeo profile image
SofiaDeo in reply to lindalou5

Imagine how ill they might have been, if they hadn't gotten vaccinated. I'm sorry to hear they were very ill, but you didn't say they were hospitalized/in the ICU so that's great.

Did you see this post?

healthunlocked.com/cllsuppo...

Unvaccinated patients are twice as likely to die from Covid. So vaccinated versus unvaccinated is "better."

ncbi.nlm.nih.gov/pmc/articl...

I agree with you that we can't control others, and that nothing is guaranteed. Vaccinated folk are less likely to get infected, and their viral load is lower.

IMO the point of lankisterguy's comment, is that one should attempt to take available precautions. I wouldn't host someone who drove my vehicle impaired, or without wearing their seat belt. They may still be in an accident, but it won't be from carelessness driving impaired, and injury is generally less severe when one is wearing a seat belt. So even *if* one is willing to host, basic precautions are warranted.

lindalou5 profile image
lindalou5 in reply to SofiaDeo

I did not post my comment to have an argument..or to be lectured.

SofiaDeo profile image
SofiaDeo in reply to lindalou5

I think we are having a misunderstanding here.

Had you replied to the original poster, as a separate comment, your comment would stand on its own.

In replying to lankisterguy, it seemed to me (and likely Sepsur as well) that you were arguing with lankisterguy, disagreeing with what he posted.

My interpretation was you were arguing a common "anti vaxxer" stance, arguing against the vaccine recommendation. When someone posts "I recommend vaccination" and the response is "they got vaccines but still got Covid, nothing is guaranteed" I interpreted it as arguing against what that person posted.

And my response was based on thinking this. I didn't mean to come off as "lecturing" but when I see what I think is misinformation, I address it. Apologies if this is just a simple misunderstanding. Do you see why it is possible it appeared you were arguing with Len?

lindalou5 profile image
lindalou5 in reply to SofiaDeo

I believe I explained myself fine in my comment..your problem if you took it wrong. Please do not feel that you need to argue and vent your opinion/anger because of something you misinterpret. Very plain in second post '.. not about the efficacy of the vaccines. If you get sick, you have the ability to spread the disease whether or not you were vaccinated. '

lindalou5 profile image
lindalou5 in reply to lindalou5

One more thing and then no more will you hear from me. I am quite the opposite of what you are implying. I sort of raged for a while during the worst of the Covid at the amt of people who were refusing the vax. My dear family members were vaccincated so that they were safe and thought that they could not pass it on. We all -the population-learned that later to be false. Many people who were vaccinated walked around thinking their crap didn't stink. They were as dangerous as others for passing the virus on. So I became more of a person who depended more on the masking, air circulating, and staying away from those who were not taking any precautions. I have a sign on my door-still-No entrance without a mask- until testing negative. My sister and my best friend got their covid from the dentist office they were in the same day and became sick on the same day later. So who is to say whether it came from a vaccinated person, or an anti-vaxxer.

HopeME profile image
HopeME in reply to lindalou5

Hi Lindalou:

SofiaDeo explained how she misinterpreted your post and offered you an apology. Please accept it and move on. We are all dealing with this lousy disease. No need to argue amongst ourselves.

Be well,

Mark

lindalou5 profile image
lindalou5 in reply to HopeME

I agree and I did write to her and explained..but it just felt too much like she was chastising me for something I did not do.

HopeME profile image
HopeME in reply to lindalou5

Hi Lindalou:

I understand. It’s terrible we all have to deal with Covid infection risk among a myriad of other risks. I understand how frustrating life can be dealing with these threats. Thank you for clarifying yourself.

Best,

Mark

SofiaDeo profile image
SofiaDeo

People who refuse to vaccinate are not welcome in our houses. As lankisterguy says, it's to protect US. If they are unwilling, then that's a Hard No.

Regardless of anyone else's financial condition, we aren't willing to risk our health. Oh, I personally would also insist they mask on all the public transportation. We don't have to ask friends & family who fly out, they already do it for themselves.

And if they are using public transit to go around on a day basis, that's doubly important to mask IMO.

Your house, your rules has always been, and still is, the prevaling sentiment. For things less critical than "I ask this because I am at high risk of catching something".

If they refuse, so do you. It's tough, but people nowadays do all kinds of outrageous "asks". Things that in past, we often helped family but that was before the days of people failing to save money because they want daily Starbucks, their hair & nails done, new clothes, streaming services, eating out. There are numerous instances nowadays of people failing to plan/budget and expect/demand relatives help financially.

I am not saying they definately are like this, but if they are, please take that in to consideration. It's not your responsibility to fund anything they have failed to save up/plan ahead for. In case you are getting pressure "because family."

It's nice for you to offer to host, but please don't let anyone put you at high risk because "family."

scryer99 profile image
scryer99

Asking them to get vaccinated for your health is reasonable. People rarely appreciate being forced, however. So consider alternatives.

The risk of contracting COVID from a co-resident is 15%. I’d consider managing the risk in the following ways.

1) Limit face to face contact.

2) N95s for you when in the room with them.

3) Have plenty of COVID tests on hand. Asking for periodic testing is reasonable.

4) Ask them to let you know when they are sick. It’s not just COVID, plenty of other things they could bring home.

OR

Hey, we’re putting you up for months, the least you could do is get vaccinated. No shots, no bed. Don’t like that? That’s your problem, not mine. Live with the consequences of your decisions. I have boundaries and I am committed to them as I have cancer for crying out loud.

—-

Depends on how much you like your family, I guess. I could go either way depending on which family member is asking and how they ask.

Recognize if you go the second route, though, you might irreparably damage your family ties. That might be OK. That might not be OK. Or, that could be awesome! Your call.

CLLerinOz profile image
CLLerinOzAdministrator

It's moments like these that cause uncertainty and anxiety and I feel for you as you decide what to do.

Apart from the suggestions you've already received, if you've not already done so and particularly if you decide to host your wife's niece and husband for such a long time, it would be a good idea to check out how well ventilated your home is.

The Canadian advice about ventilation measures that can help to reduce (not necessarily eliminate) the risk of contracting Covid-19 can be found here:

canada.ca/en/public-health/...

The Victorian Government's Health Department here in Australia also has a helpful resource: betterhealth.vic.gov.au/cov...

CLLerinOz

AussieNeil profile image
AussieNeilPartnerAdministrator

That's a very awkward situation you are in, for which you've had some excellent replies. I'd add that if they haven't had any COVID vaccinations, they don't seem to be too proactive about protecting their health. Different vaccinations vary in their effectiveness, with a few providing long lasting neutralising protection. The majority reduce the risk of and severity of any infection, but their effectiveness wanes as people age - even among those who are immunocompetent. That's why boosters are recommended for some vaccinations, up to yearly for the flu. So even if they are up to date with all recommended vaccinations, they can still bring home infections to you, albeit with a somewhat reduced likelihood.

You've mentioned that your wife's niece is having treatment. Will that reduce her immunity to infections? She'll be exposed to different bugs where you life to where she's living.

I wonder how she and her husband would feel in your shoes at your age? From your past posts, this appears to be your third round of treatment for CLL; FCR, ibrutinib and now a clinical trial, for which you don't know the associated increased risk of infection - that's one of the things the clinical trial will be determining. Neutropenia is common with all CLL treatments and we rely on our neutrophils as our first line of defence. To be accepted as guests, your relatives should be prepared to do at least what you to to protect themselves and you, e.g. wearing N95 masks on public transport. One haematologist reckoned the chances of picking up an infectious disease for blood cancer patients approached 100% after an hour on public transport. I don't have a reference for that assertion, but I gave up going to lectures on CLL after picking up colds and that's when I wasn't in treatment.

Neil

Skyshark profile image
Skyshark

What is she being treated for?

DogmomLM profile image
DogmomLM in reply to Skyshark

My question too. If she’s in treatment, it would seem she is also in a less robust state of health and would profit by protecting herself, much less protecting her kind-hearted ( you and your wife) relatives.

e_yu profile image
e_yu

If it's me, quite simple: my wife's niece, my wife's decision.

Spark_Plug profile image
Spark_Plug

The first question is have you already said yes? That can make it much harder as scryer99 noted forcing as opposed to choosing is a dynamic that will make or break how things go.

If they are waiting on your answer, then go the full disclosure route with a choice. "As you know your aunt and I have had to make lifestyle changes because of my cancer. So, before you choose to stay here, you may want to ask yourself if vaccination, masking while out traveling public or at (niece's) treatments, stores around lax masking standards is a commitment you'll make. At home here we maintain a highly hygienic routine in shared common spaces (kitchen and bathroom) wipe downs with sanitizers, etc. Because, it wouldn't be fair, to you to spring our expectations on you when you get here, and we'd never want hard feelings to develop if we had to ask you to leave".

They may get emotional and it may hurt, but more so if you have to force the point later.

Having been on both ends, host, and cap in hand guest, remember it is ALL about love, yours's for them and theirs's for you ( I swear my spell check is telling me to correct your's and their's) .

At least they know what to expect, and it removes the potential for embarrassment and awkward conversations.

Sepsur profile image
Sepsur

I agree with lankisterguy

Lilsa profile image
Lilsa

HI Crusher,

I do love Spark Plugs reply.

I have to deal with this sort of quandary (with the shoe on the other foot) regularly when I travel interstate to visit daughters and help care for grandchildren. There are cheaper options than hotel rooms. For the last few stays I have house sat and pet minded close to where my Sydney daughter lives and that has suited everyone. Worth putting a community board enquiry out.

Keep walking

Lilsa

Very best wishes

Spark_Plug profile image
Spark_Plug in reply to Lilsa

Now there's some outside the box thinking, great demonstration of flexible non-linear logic! +1

RosettaClapp profile image
RosettaClapp

Tell them yes they can come but on the understanding they get vaccinated.. Choices have consequences and it's their choice

ChristyAnne_UK profile image
ChristyAnne_UK

You've had some great replies, but for what it's worth, here's my list:

- Both vaccinated (at least two weeks prior)

- Tested daily for several days before, and regularly when with you

- Solemn promise for them to wear N95+ respirators on public transit, and all indoor public places, ESPECIALLY medical facilities

- HEPA filtration in shared areas at home + ventilation

- N95+ for you and your wife when in shared space with them

- If you have outside space & good weather, socialise and take meals/drinks outside

- If you have pets, discourage them from handling them

- Establishing hygiene expectations never hurts

- Communicate your expectations well in advance, and get them to agree

That's all I can think of. On the financial front, I would also expect a long-stay guest to contribute to extra expenses, but that's just me and not what you're asking.

Hopefully, it won't be contentious.

LeoPa profile image
LeoPa

Can they rent an Air BNB? How about a campsite with bungalows for rent? Hostels? Those should be cheaper than hotels.

francc profile image
francc

There are some things I am sure your relatives understand and respect: Your doctor has surely advised you to be vaccinated and stay updated with your vaccinations, and to keep your distance from people who are unvaccinated. That should be easy enough for most people and relatives. :o)

Stamphappy profile image
Stamphappy

I have a similar situation. My brother, his wife, their daughter and her son, are coming from Europe for several months. They asked to stay with us: Unvaccinated, Don't wear masks, Have had covid. My heart- broken answer is no. I am too concerned that catching covid will accelerate my cll. We can visit outside.

Bobby9toes profile image
Bobby9toes

You are in a tough spot. You didn’t say what she was getting treatment for. I would ask her why she doesn’t want to get vaccinated. I was in a similar place as she is in a few years ago. I wanted to visit my brother and stay with him for a few days. I was not vaccinated. He had congestive heart failure as well as what the doctors thought was COPD. He asked that I get vaccinated before coming because he was afraid if he contracted Covid, it would kill him. As much as I didn’t want to, I did because his health and wellbeing was more important to me than my personal feelings about getting vaccinated. I hope you all can work this out to keep you well. Good luck.

Jan

Spark_Plug profile image
Spark_Plug in reply to Bobby9toes

Thank you, how I wish people could get an anti-apathy vaccination!

Red49 profile image
Red49

I think it depends on your relationship with your niece and husband. Can you trust they will do what is best for you? If they are anti vax, do not believe in wearing masks, are not stringent with hand sanitizer then the answer is no. Do you know how they were during the pandemic? Those factors would all play into my decision.

If she is getting treatment for a serious illness then she and her hubby may be more careful as well.

I am very close to my nieces and I know 100% they would not take a chance with me and are up to date on all vaccines. They are also extremely careful around my 90yr old mother who does dialysis for CKD.

At the end of the day no matter what your niece and husband do there are risks involved so can you be comfortable with that? I think you just need to have a heart to heart express your concerns and in fairness to them I would do it soon in case they need to make other arrangements.

Justasheet1 profile image
Justasheet1

rcusher,

Does being vaccinated prevent infection or transmission or does it just lower the risk of hospitalization to the individual infected?

My understanding is the latter so I would ask them to where masks when traveling and wash hands. You can try to practice a little distancing and keep the windows open.

The issue for me is not the lack of vaccination but the high risk travel that they must do.

In the end, if they were vaccinated they could still give you Covid but if you catch it and test, you can get Paxlovid.

It all depends on your level of risk assumption for your family.

Jeff

MisfitK profile image
MisfitK

What would I do?

I'm gonna go against the grain...but if you don't hate this family (and they don't normally stress you out wildly, where that would affect your health), I would house them.

I've been in your niece's shoes...and unexpected family members stepped up to help me in a moment's notice, no questions asked. I now try to do the same b/c how could I not? If they hadn't stepped up, I'm not sure what I would have done...but they did.

rcusher profile image
rcusher

Update on my Question ' What would you do ' I had a long conversation with my wife's niece about my concerns and I asked what she what she was coming to be treated for. The main reason that she hasn't got her covid vaccine isn't because she' an anti-vax person it's just that her condition is very complicated and has had trouble with almost anything she has taken. She said she is very conscious of getting infections so much so that she will be driving from northern Alberta to Toronto because she's afraid of getting sick from being on a plane and also while here she doesn't want to take public ( subway ) transportation to avoid people so she will have her car here to drive to appointments. I will attach her note on what her condition is. Very rare, apparently only 16 people worldwide have same condition. So for me as of now I am still undecided about having her stay here but will be looking at other options for her. She completely understands my position.

Here's what's she will be treated for;

A chunk of my #2 Chromosome is missing. ( 2q12.3q13) Based on the testing done so far, 3 genes are affected. The main Choline transporter gene in the body is one of them, affecting all systems in the body especially brain and nervous system.

No name for it yet.

First and only published study in 2021.

We know there are 16 other people in the world with the exact same deletion.

Thanks for all the response, I read them all.

Jack

SofiaDeo profile image
SofiaDeo in reply to rcusher

I had a neighbor handyman with Graves disease who was told by his doctor not to get vaccinated. He too was very careful about getting sick/catching things/masked in public, and I never felt unsafe working with him. So it wasn't so much "unvaccinated people" as "what precautions are they taking to prevent themselves/others from getting /passing infection."

Not having the information that they were unvaccinated because of doctors recommendation, AND that they are mindful of infection, I would take that into account. So I amend my earlier statement.

If she is similar to many of us, masking and being mindful of infections, that's about the best one can do. And I also imagine if I were her, I would rather stay with a relative I knew was as mindful of me regarding infection, even if a hotel expense was not an issue. I've been in some dirty hotels even post Covid, a shared HVAC with a bunch of strangers is about the worst.

The fact that she is bringing her vehicle because of her concern about her own exposure on public transportation, is verification she is being careful.

I have air sanitizer so my entryway and the house itself gets surfaces sanitized without me having to wipe things down/get exposed to disinfectants. I occasionally run them in unused rooms overnight, and I have one near the main entryway where outdoor layers/shoes are left. Only the door units (I have one at the back door, where the doggy door is that they can run in & out the backyard as they please when unlocked) are run 24/7.

I like these, I clear dust around the air intake on them and change the bulb approximately every 3 years. They are very quiet and don't need filter changes like a HEPA unit. The device starts making a noise to tell you the bulb needs changing, one doesn't even need to keep track.

Maybe check one out for yourself, and share this information with her. I have tested this technology.

I am convinced my partner, his dad, and his sister were all exposed to one of the early Covid infections in the US. Most of this small ski town was ill with a severe respiratory illness January 2020, and people attibuted it to a charter planeful of Chinese tourists (true story, as far as I know, I was out of state). All three of them were very sick, and after 3 weeks no one was getting better. I asked my partner to drive back as soon as he felt well enough, Imwas sure they were all re-infecting each other. Plus no one was well enough to care for any of them.

He was concerned about giving me this infection. Late 2019 was when we had purchased this technology, to blanket the house. I said "let's test this tech we bought, see if it works." So he drove back as soon as he could.

Now, I did a number of things like swap his pillowcases daily, and clean any handles he touched, aired out bed linens, etc. so wasn't relying 100% on this tech. And I slept in the same bed, with our backs to each other. I did not catch this infection. His dad was so sick, he had in retrospect a sustained inflammatory reaction, and was weak/bedridden for over a year (a large part was his refusal to see a doctor, but that's another story).

But bottom line? The viral load was kept low enough that I didn't catch his thing. I did catch a "cold" some months later that I was sure I contracted from passing a group of workmen outside; I could smell their cigarette smoke so I imagine anything they were coughing out also hit me in the face. I now carry a mask when walking the dogs.

airoasis.com/products/ionic...

rcusher profile image
rcusher in reply to SofiaDeo

Thanks and yes the fact she is driving from her place to mine ( btw, it is approx. a 32 hour drive ) shows her concern not only for me but herself also.

SofiaDeo profile image
SofiaDeo in reply to rcusher

Mention to her that I read something showing that gasoline pumps and those touch pads are extremely contaminated. I carry a pair of thin gloves in the car, to use pumping gas, and remove them carefully before getting back in/touching steering wheel, etc. Disposable would work too, I just don't like the waste. I wash them a few times a year, with blue jeans/socks, they sit crammed into that little space between the seat & center console.

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