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Managing risk while being immunocompromised

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parakeetsrule
parakeetsrule Member Posts: 605

My oncologist told me that I'm considered immunocompromised, which wasn't surprising. But I asked for clarification and she didn't have much to offer, she only said I was more prone to infection and that it was hard to quantify the risk. So....now what? I'm not sure how to manage this unknown level of risk.

I don't have any desire to be in thick unmasked concert crowds or anything, but I also don't want to be a total hermit and avoid people and places I want to see, and events I want to go to. Covid is quickly becoming what I feel is a non-significant issue where I live because of extremely high vaccination rates, willingness to wear masks even when it's not required, and taking precautions in general. (yes, I understand that can change but for now, I'm good with covid risk) I'm otherwise healthy and in good shape, and don't have any other health problems to worry about. Just dumb old cancer. :)

Unless the common cold is going to kill me I'm probably not going to stop traveling. But other than the extremes I mentioned above, I have no idea what's "safe" and what might be best avoided. What kinds of things did you start avoiding after your diagnosis, if anything? Does anybody basically do everything they did before cancer? Anyone know of research or more specific information about how at risk we are for infections while being treated for Stage IV cancer?

Edit: NOT covid-specific risk. I mean in general, with colds, influenza, other viruses, etc.

Comments

  • illimae
    illimae Member Posts: 5,642
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    I had a similar discussion with my MO. Being on an oral chemo, I’m technically immunocompromised but due to how individual Covid symptoms and severity are, there’s no telling. I generally plan with worst case scenario in mind, especially being unvaccinated (primarily due to allergy). Currently, I avoid dining indoors, large crowds and socializing with friends who work directly with the public and/or go out to bars and clubs whether they are vaxed or not. DH and I travel in state by car, go to our cabin, beach, RV trips, etc. I enjoy cooking and we occasionally get take out but I really don’t feel like I’ve missed out on much, except for concerts. I wear a good mask everywhere indoors but I do go out and about pretty normally, I personally feel like the risk is not what media would have us believe and I’ve still got to live what’s left of my life.

  • moth
    moth Member Posts: 3,293
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    This is a great resource to estimate your personal risk of needing hospitalization or ICU/death from covid 19

    https://riskcalc.org

    I am essentially still in self imposed lockdown. My 3 big outings since March 2020: outdoor garden center X2, early in morning when no one else around. Ikea late at night weekday when it was almost empty. That's it. All my other appointments are medical.

    I walk outside a lot with my dog. We did stuff like boating & in 2020 went tent camping in a very quiet low occupancy place right on the water with lots of wind.

    We were having people for socially distanced visits outside last summer. Sitting, no milling around, one couple in our bubble only, everyone masked. We stopped this fall as numbers climbed & then when Omicron hit. My son had a couple visitors last summer but they kept to a separate part of the house, windows open. I'm not letting my guard down, not yet.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Sorry if I wasn't more clear...I'm not asking about covid in particular. I'm fully vaccinated and almost everyone in my state is as well, plus our omicron wave is almost gone. Once we get back to low transmission levels I'm going to treat covid the same as any other germ to avoid. And get that fourth booster as soon as I can! :)

    I'm thinking about the overall risk of infection in general, when it comes to regular colds, influenza, viruses, etc. How did people handle it before covid, basically?

  • olma61
    olma61 Member Posts: 1,027
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    I was on taxol before COVID and I was told I was more susceptible to infection at that time. I wore gloves everywhere to try to protect my lifted nails, I did wind up with nail infections anyway. I didn't wear a mask anywhere, some people did wear surgical masks to the chemo suite but I never did. I did contract a couple of upper respiratory infections, not serious, pretty routine, I had to go on antibiotics for those and also for my toenails. I got pinkeye a couple of times too.

    I used to shop for myself, go to the gym, the mall, restaurants etc. Didn't go to any concerts or fly anywhere. I took my first post-cancer vacation after the Taxol was over with.

    Nothing I came down with was any different than what I used to get when I worked with other people, except the nail infections, those were new. It is important to treat any infection right away, of course

  • illimae
    illimae Member Posts: 5,642
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    Parakeets, with regard to non Covid risk, I do nothing really. I avoid anyone feeling ill and I’m extra cautious and observant about signs of possible infection but so far I’ve been very lucky. My only infection was my nails during my initial chemo in 2017 and I haven’t had a cold or flu in nearly 10 years.

  • olma61
    olma61 Member Posts: 1,027
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    I will also add my WBC count was never super low, it did dip below normal slightly at times, but nothing that alarmed my onc

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Oh I didn't even think about WBC! I can probably look that up in the bloodwork I just did yesterday.

    Edit: Interesting! The last two WBC readings are lower than the readings I had before starting treatment, but not by much and they're still well into the normal zone. But the first one after starting treatment was doubled and flagged as high! I wonder why? My immune system freaking out after being inundated with all sorts of new drugs? Infection I didn't know I had?

  • Kikomoon
    Kikomoon Member Posts: 358
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    Parakeets, my MO says to look at the neutrophils (sp?) count.

    I was diagnosed during Covid, so don't know how it would have been before. If Covid were NOT an issue (which I still think it is) I think I would prefer to dine outdoors, but indoors would be ok if not too crowded. I would avoid crowded indoor places and routine shopping (curbside is my preference from now on, no matter what's going on). I would probably only wear a mask in an airport, on a plane, or bus, but generally avoid crowds indoors. Wash hands alot, hand sanitize. I think they told me to stay away from fresh vegetables and fruits unless making myself, but I have largely ignored that :/, probably not the wisest decision. I have, unfortunately, given up raw sushi and rare burgers/steaks though :(.

  • illimae
    illimae Member Posts: 5,642
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    Parakeets, since bloodwork was mentioned, I’ll add that I did have a few tattoos done while on maintenance chemo. Labs a few days prior to the work were good and I scheduled them on my off week but no infections and no other issues, I healed quickly and completely.

    PSA: Almost no MO would approve of tattoos for us, so I asked if I’d likely heal ok if got cut or injured (I was packing to move at the time), she said yes.

  • divinemrsm
    divinemrsm Member Posts: 6,188
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    It sounds odd, but other than getting the mbc diagnosis 11 years ago, I’ve hardly been sick. One big exception: I had Covid a year ago before the vaccine was available. This, despite following all safety guidelines. It was the sickest I’ve ever been for two solid weeks, then it went away. It took awhile to regain energy. Now 2x vaxxed and boostered.

    I get a flu shot every year. Years before Covid, I was in the practice of immediately walking into the bathroom and washing my hands whenever I came home from being anywhere; this continues. I’ve also always preferred to shop early in the morning whenever possible. Same thing for doctor appointments, any kind of scans and other appointments like car repair: early.

    Something else: I take time to relax. Rest is very important to me. And I drink lots of water.

    I do miss going to concerts. I don’t miss restaurant eating; ordering take out works fine for me, Dh and I got a pool pass last summer. It often wasn’t crowded and is a good place to socialize. We went to a few family gatherings at Christmas. I go to line dance class and water aerobics. Classes are small. I should add that I don’t work outside the home, and dh is almost retirement age and our kids are raised so we have more flexibility arranging our schedules around what works for us.

    For a bit of context, tho, I’ve had surgery two summers in a row for broken metatarsals in each foot (ugh) and had a difficult year due to side effects from mbc treatment, plus the first year after dx dealing with chemo/surgery/radiation, so it hasn’t been a cakewalk. Life’s always, always throwing stuff at us. That’s life.




  • nkb
    nkb Member Posts: 1,561
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    Before covid while on Ibrance and then Afinitor I didn't do anything differently - my lab was low on ibrance. if someone was visibly sick I moved away from them. I did go to Warriors games which were indoors and packed and ate in restaurants I did get a severe virus in Feb 2020 (covid? will never know) and ended up in the hospital- I was on an anti-hormonal only at the time.

    Now I am pretty careful- no indoor restaurants and no indoor concerts or Warriors games. I wear a mask indoor anywhere (it is a mandate here anyway) and am increasingly wearing only n95- I do go to the hospital lab twice a month and pharmacy and lately radiation. I did fly to Vermont right before Omicron-masked etc and only ate outdoors and stayed in a B&B which was small and I didn't run into others. went to a few museums.

    I think that my biggest risk is getting together with my son who lives in SF which is highly vaccinated also- but, he goes skiing, rock climbing etc - he does a test before he visits-

    Ive only gotten radiation tattoos.

  • olma61
    olma61 Member Posts: 1,027
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    oh yeah - I bought Hibiclens for washing my hands in the bathroom and my feet in the shower. Also, plenty of peroxide for cleaning the kitchen counters and the washing machines since I have to use the laundry room in my building

  • aprilgirl1
    aprilgirl1 Member Posts: 784
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    Parakeets, I started Ibrance a few months prior to Covid and my oncologist told me from the start that there are times in my Ibrance cycle that my anc/white count will be low and I will have lower immunity and/or need to be more cautious to avoid getting colds or the flu. Specifically, she said in my case, the meds don't make me immunocompromised as my WBC will rebound and fluctuate during the 21 days on Ibrance. So I started out pre-covid "lying low " on my last week into the beginning of my off week of Ibrance knowing that my anc would be lower. At that time I started shopping at the grocery store early in the day vs. on my way home from work (less crowds) , started carrying hand sanitizer in my purse and did not attend a couple of large holiday parties in the end of 2019. A few months into 2020 our state and most states had serious covid protocol which probably helped me and I had already started some new "immune protection" habits.

    I now have 2 years on Ibrance and my blood work is consistently low at the end of my third week so I plan events with this in mind. I did attend a concert in Sept 2021 at a large arena but proof of vaccines were required AND we wore masks inside. It was early Sept so covid #'s were low in my area and Omicron had not hit here, yet. My oncologist has been supportive of the travel that I have done, asking me to keep N95 masks on (no snacks on flight) keep glasses on or wear goggles on the flights and eat outdoors (we have traveled to warmer climates). She also told me to carry my own sanitizer and not use the sanitizer provided by various stores/restaurants.

    We have continued to eat outdoors only when we have been on vacation or in warmer weather (which means take out in the Seattle area right now n-95 masks. I no longer have clients in my car (I sell real estate) and I don't take public transportation (used to take the bus when in the city). I quit my indoor gym membership :(

    I had one cold (Thanksgiving 2021) but otherwise have not been sick these past two years and 2 months.... except for Cancer;) I have not had covid that I am aware of (I took a home test when I had a cold at Thanksgiving but it was negative for Covid).

    edited to add: Like Candy-678, my concern is that I don't want to stop treatment due to illness (covid or something else). In addition, I really try to ONLY spend time with people that have been vaccinated for Covid. I do ask clients if they have been vaccinated. The majority of my friends are vaccinated, and 1 has a significant allergy and can't get vaccinated but also doesn't go out much as she is concerned about her health. Obviously, if I am at the grocery store I don't know who has or has not been vaccinated but my state has a mask mandate in place and people in my small community are careful about distancing etc.


  • candy-678
    candy-678 Member Posts: 4,141
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    Parakeets- I was diagnosed with MBC in 2017- 3 years before Covid. I was initially on Ibrance as my first line therapy and I fought low WBC's and ANC's the whole time. I have always been cautious about germs and would wash my hands immediately when coming back into the house from being out and about, always washed my hands before eating, etc. I wore a surgical mask during cold/flu season and paused in-person church attendance from November thru March when colds/ flus abound and people are coughing and hacking. I did the elbow bump handshake before it was a thing post Covid. I did my own grocery shopping but took bleach wipes along and wiped down the cart handles.

    I was rarely sick, but I think it was really due to how I was cognizant of germs and was cautious. My MO at the time (changed MO's in 2020) also would advise me to be cautious, saying to stay out of crowds during the winter months. I told him I was not going to in-person church that winter (winter of 2018-2019) and he said he thought that was best.

    Post Covid era it really hit me about germs and I became a major germaphobe. I have pretty much stayed indoors--- changed to curbside grocery shopping, drive thru's when available-- bank, pharmacy, etc, and have not been out to eat since Covid began. I have not been to church since Covid hit. My area is FULL of anti-maskers and anti-vax people. I now mainly only go to doctors appointments in person. And I have mastered Zoom.

    I do think that MBC, and the meds we are on that make us immunocompromised, do change us. Even without the Covid pandemic. We have to be more careful of getting sick. Not only the illness itself, but also if we get sick, we may have to pause our treatment as we heal, and that is not good to have to pause cancer therapy.

  • terri-c
    terri-c Member Posts: 65
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    I'm also a hand-washer, and I do all of my shopping early in the morning since Covid. Prior to Covid, I was still a hand-washer, but shopped when I felt like it. In the last year I've been on 2 beach vacations, been to a funeral and a wedding, and a few family gatherings. I don't worry too much about it, but when the Covid cases are spiking, I make sure I wear a mask when going inside any store.

  • divinemrsm
    divinemrsm Member Posts: 6,188
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    I often use Walmart pick-up for large grocery orders, tho for a handful of things I will run into the local store. I live in a small town and know the times it's least populated.

    I haven't been in a car with anyone but dh since the pandemic started. When I started line dance and water aerobics last summer several women offered rides but I turned them down. I want to have my own vehicle with me anyway, not just due to Covid.

    Dh takes precautions when he's at work and takes a shower as soon as he comes home. We are not church goers. We don't have much interest in attending sporting events these days. I have not been to the funeral home since Covid started.

    Covid and the pandemic changed me and I am still processing the changes. I don't put up with stuff like I used to. I'm more selective about how I spend my time and who I spend it with.

  • sf-cakes
    sf-cakes Member Posts: 572
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    My white blood cells, neutrophils and platelets all take a hit from my meds, too. My MO has told me they simply won't ever be in a normal range on my current regimen, and at the end of my cycles they can drop fairly precipitously. To the point where the oncology pharmacist reminds me to wash my hands frequently (which I LOL about, as haven't we all been washing our hands feverishly like raccoons in a stream these past couple of years?) and at one point, encouraged me to not eat any fresh, uncooked food. It's definitely weird to have a doctor tell me that, like a salad could kill me! She Had Cancer, But It Was The Lettuce That Did Her In.

    I believe I will continue to wear masks when I'm out and about, long after any mask mandate, because I agree with what Candy said, I don't want to have to delay my treatments due to a flu or other illness.

  • dancemom
    dancemom Member Posts: 404
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    I was diagnosed during pandemic, so I "grew up" in a mask. I'm terrified for the time when its not required here anymore. I teach about 110 dif kids under age 6 each week. DH runs a restaurant. Public transit is a daily necessity. My onc only once mentioned that my low counts put me at higher risk for infection. She wants me to do my normal life as much as possible. I haven't been out of my apt with out a mask since June 2020 (March-June 2020 I didn't go outside at all - except to store every other week w mask, plastic gloves, clothes I took off in the doorway and left in a plastic bag until I took them and my bleach wipes to the laundry room the off week)

    We dont eat inside restaurants, we haven't traveled at all, we only use transit as absolutely necessary (i walk a few miles a day), we dont socialize inside...its been a long 2 years. My 11 gets to go to his first inside social event in 2 years this weekend! Its with classmates he sees every day anyway, and same rules as school; fully vaxxed, kn95s, negative test this week, eating will be outside. All playdates have been in parks no matter the temp, we bundle up for socializing in 20*. Only rain has canceled playing.

    Yeah, im afraid for the future when everything "normalizes" and I have no white blood cells.

  • cowgal
    cowgal Member Posts: 625
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    After my recurrence in September 2019 that put me at stage 4 and the start of the whole chemo, then radiation, Ibrance, etc. stuff, I was told I needed to be more careful about trying to avoid getting colds, flu,etc. Obviously, I needed to continue washing my hands and use hand sanitizer and be more vigilant than before. Some of the other things I do is try to identify things that are probably dirty that I didn't normally clean (for example: keys, eyeglasses, cell phone) and make sure to clean and disinfect them. I bought one of those UV light sanitizer boxes and put smaller items in them. I also make sure at the end of each day to use an antiseptic mouth wash (mornings I do the flouride rinse because of being on XGEVA). I also will occasionally use a better version of a netti pot (I'll paste a link later if anyone needs me to) to rinse my sinuses if I think I have been somewhere where I might have been at higher risk. I still avoid large crowds and I shop on Saturday mornings since I work all week and sometimes use curbside but I also do in store early before it gets crowded (I did the morning shopping early before my cancer came back...I'm a morning person and I don't like waiting in line). We live in a rural area but on Saturday night's, we go to town and eat and will sometimes sit with another couple or two and socialize. I do not normally wear a mask but have one handy. I avoid being around anyone who is obviously sick but I probably take more risks than some others on here. I had the flu shot and have had three shots of Moderna and not sure about getting my 4th dose as I want to talk to my MO in two weeks about getting it. As far as the 4th dose of Moderna, I want to know how much my risk of a bad side effect to it increases at this point compared to the protection I already have from my first three shots and my PCP could not tell me...I don't think anyone knows.

  • chicagoan
    chicagoan Member Posts: 1,004
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    I think there is a big difference on risk assessment as to whether one is on IV chemo vs a targeted treatment. If I was on IV chemo I would be much more cautious because it seems that the immune system takes a much bigger hit. So far I have only been on Ibrance. While I have had low ANC counts the entire time, my MO and I agree that I don't seem particularly susceptible to infections. Pre-Covid, I let my friends know that I have a compromised immune system and requested that people let me know if they were sick before a planned outing. I'd rather stay home than get exposed to their cold or flu. If I was in a meeting with someone with an obvious cold, I would try to sit as far as possible from that person. I was very annoyed when a friend showed up for a dinner/symphony get together with a bad cold and told me that she didn't think she was infectious anymore. I guess she was right because I didn't get sick but I also did not enjoy my evening.

    I have been cautious with Covid but never isolated myself. Pre-vaccine, I socialized outdoors and socially distanced when I did my shopping, etc. Post-vaccine, I have lived a normal life. I've traveled several times, go out to eat, gone to concerts, church, crowded places, etc. I took a break in January due to an Omicron surge but now I am back to living a fairly normal life. As I said, if I were on IV chemo with low counts, I would live much differently.

    I feel like we never know what the future will bring having MBC, so my philosophy is to live life as fully as I can given my current circumstances because I know they could change at any time.

  • candy-678
    candy-678 Member Posts: 4,141
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    Good point about IV chemo versus targeted therapy. But it is really true?

    As I said, when I was on Ibrance my counts were always low. My WBC was 1.0-1.5 and my ANC never went above 1000 (1.0) and was usually 800-900. I have read on here that with Ibrance our counts are not "killed" but "sleeping" and would rouse on our week off. And that we were not really immune compromised. My MO did not seem to take that stance, as he advised me on crowds during cold/flu season (before Covid came to existence). Now I am on Lynparza--- a PARP-- targeted therapy, I guess. My latest WBC was 3.2--- higher than I have been in 4 years on Ibrance !!! But I do not get a week off Lynparza. It is twice a day dosing, every day. And the side effects mentioned in the literature is low WBC, RBC, and platelets. And mentions about monitoring for infections.

    So are we "ok" if we are not on IV chemo treatment, but targeted therapies??? I do not want to be lulled into a false sense of security just because I am not on IV chemo.

    Though I do wish I could let my hair down and go out and do things while I still can. But, I just cannot live like I did pre cancer. Pre cancer I was not a traveler or always out on the town, but I did go places. And never thought a thing about going to a concert, the theater, a trip with friends. Now, even if Covid was gone, I would think long and hard about doing things like I did pre cancer. Is anyone in my group feeling under the weather? I would bring bleach wipes or hand sanitizer. I would have good hand hygiene. I would weigh the risks/ benefits and chose what I would do where pre cancer I would have just done it without thinking.

    Edited to add--- my last WBC check was 3.2, but the lab before that it was 2.7. So my WBC's are fluctuating during the month and will drop and then go up. So sometimes during the month my counts are lower. We do not know when it is lower and when up and can be suseptable to illnesses more at one time than another.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Thank you to everyone who has responded! It's definitely a lot to consider and it's helpful to hear what you are doing, or not doing. It's been on my mind because I have two upcoming trips that would probably be considered risky. They would be my first travel since my recurrence last year and I'm leaning towards skipping both mostly because covid is still a thing and there will be lots of people, lots of strangers. If there was no covid or it was down to minimal levels everywhere, I would go and just be extra careful.

    But they are opportunities to spend a lot of time with people I haven't seen in several years and/or people who are important to me. I live alone and most of the people I want to see live far away or far enough away that we can't pop over for dinner on a regular basis. Not traveling is not really a viable option. Neither is moving to be near them, because they are scattered all over the place. I don't want to get horribly sick but also, what's the point of doing treatment to live longer if I'm just going to sit at home alone all the time, you know?

  • terri-c
    terri-c Member Posts: 65
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    Parakeets....I am going to Europe in June. I get it Happy

  • sondraf
    sondraf Member Posts: 1,627
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    SFCakes - I managed to get a slight hit of food poisoning start of the month either due to older salad or older chicken I put on top of the salad! Ive been on long haul flights, in an office, on public transport (and in rush hour to boot!), in grocery stores, in a few restaurants, at home dinner parties, in the hospital, hell I even went to a concert in November indoors with 3K other people, and it honestly was the damn salad that caught me unawares! I only threw up twice but it took a week for stomach to calm down. Still haven't caught Covid or the flu, and just one suspected sinus infection since diagnosis.

    Mostly I just stick on an N95, sanitise hands when I get somewhere, try and not touch too many things, and stay away from the obviously ill. I wore a mask for over 16 hours on the plane back to the US but if you get a comfortable enough one its not that big a deal and I had to do it - it was the only way to see my family. I wore one to my concert too, even though I was one of a few doing so but eh, who cares how it looks, what mattered was that I went out and had fun and saw a band I love with a good friend for the first time in almost 2 years.

    Otherwise, in the few months I had between dx and the pandemic, I was starting to avoid the hot tub at the gym, being more careful around the cat box, and making sure I kept my sinuses irrigated (I tend to get sinus infections if anything). After the salad debacle the fridge got turned down a few more degrees and new household rule about purchasing meat and fresh veg and use by dates (difficulties with freshness lately due to hold ups at the border cause: Brexit). And if in doubt I do pitch it out - stuff like leftover rice, etc. and make sure things are labelled with dates made so I dont lose track.

    Parakeets - I say go on your trips, but maybe try some exposure therapy type activities before you go. Its hard to mentally overcome all the messaging about Covid, but when you start to get into the flow of being around larger groups of people or more people indoors, it starts to fade. Just have to build up confidence! And if you feel uncomfortable at some activity or point, speak up and suggest moving or a different activity.