How has the Pandemic affected you as a cancer patient/survivor
Comments
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Can I just AAAAAAAAHHHHHHHHHHHHRRRRGHHHH here?! I hate Covid and I hate that there are so many nice people who believe in conspiracy theories.
My mom, thank goodness, doesn't believe in Covid conspiracies, and for the most part, is level headed and thoughful, but she does believe in sasquatches. She's a lovely and smart woman who believes in sasquatches!
I am glad my mom's choice conspiracy is super benign, but gosh dang it, the Qanon Covid crowd drives me nuts. Talk about normal everyday things and they are perfectly fine people. They even seem to care about others in unfortunate situations, and may lend a helping hand. But once you bring up Covid, all of a sudden they feel attacked and the crazy comes out. Why can't they just be not freaking weird? I am generally passive with conspiracies, but these people are just harmful to themselves and to everyone else. I am mad that I have to reevaluate friends and family on a scale of how much harm would this person be willing to put me in!
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In Feb 2021, we were kind of getting used to the new normal when our new normal got even stricter with my cancer diagnosis. After my diagnosis, we stopped sending my son to school, and except for my mom, who came to live with us, we haven't had anyone over for the last 6 months. During that time, my son had no play dates or any other physical interaction with anyone outside of our household. He just went back to school about a week ago. I do worry about his mental well-being. I feel like my cancer diagnosis during covid made a prison for my family at the time restrictions were easing here.
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Aram
I think kids are pretty resilient.
I have older teen kids and I felt bad during the pandemic first they had to worry about me and cancer in 2019 and then once the worry dust had settled for that Covid showed up and they had to worry about me getting a bad case of Covid. They missed out on a year of the teenage life the times where you meet at a party, have a first kiss- all delayed. Being back in school with masks has made a real difference in their mental states—- I’m grateful our state requires masks for pre k-12. It’s obscene not to require masks for teens and younger
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Thrishyla, thanks for starting this thread. An important question, can be answered from different perspectives. I try to point some views, mostly related to my fears and emotions.
No doubt that the pandemic has negative effects on my life, I tried different ways to manage some of difficulties and learned to give up those that I do not have power to change them.
- I diagnosed stage 4 at the beginning, and ended up in hospital and bed rest a couple of months before the previous administration decided to talk about the virus! I needed emotional and physical support, so my sister offered to come over here and stay with me for a month or until I could safely walk, then bam Europe-US borders went to complicated relationship, I did not want her to take any risks, so the plan didn’t work.
+ a good number of meditation classes, support groups etc switched to online, which worked well for me as I wasn’t in good shape to attend them in person in the world without virus. So I took advantage of those resources while working on my emotions accepting my new normal as MBC with broken vertebrae who must be very careful about basic daily activities, and dealing with unknown future.+ lockdown gave me good reasons to reduce my relationship with annoying/ toxic people...mmm some in-laws, friends. so I don’t have to listen their expert opinion based on their neighbors great grandmother’s cat died of cancer. a bonus, I made a good number of friends, virtual and real.
- I am deeply disappointed in few relatives& friends, I work on few plans hopefully I can make some positive changes in my life (the pandemic and cancer slow down my plans).
+ lockdown has also made people to learn new skills, hobby included, and that enables them to cope with isolation/ new normal. I enjoy seeing people do some meaningful actions, unlike those that have nothing to offer but craps.
+ I had a very busy life before cancer, so did not pay much attention in simple joys, during the pandemic/ lockdown while I was so slow because of rads+treatments- the good thing was I did not have to push myself to be more because the world was slow despite fast-spreading virus-, we created some good quality time, as simple as making cookies together, watching silly movies, some high school games etc.
- from August to April I hadn’t had in person meeting with my new MO. It was Scary, no physical examination performed for 8 months. My follow up mri after radiation postponed 2 months, the results weren’t good but no changes in treatment, so didn’t really matter the delay at the end.
- scan/mri machines are the most scariest, when they accept patients back to back and I have no power to change it.
+ I rather prefer to go to my appointments solely, so ‘no guest’ policy is my favorite part!
+ Now we have highest vaccine rates after Massachusetts, my city 77% of eligible people are fully vaccinated, before delta variant 77% could lead us to herd immunity, many healthy people don’t wear masks which is fine but I take extra precaution. I haven’t seen fully vaccinated people around here get infected by virus as I think it is because the population of vaccinated is high. California handled the spread relatively well. I hope people take a few minutes of their precious time to vote no on this ridiculous recall or we’ll face a new pandemic here, and before someone with medieval opinion- embarrassing democracy even more- makes decision for women’s body, my blood is boiling..... -
Aram, we delayed the start of school for our little ones in elementary. They are going to start school on Monday. I felt like I missed out on their growth during the summer. I am usually a really fun mom and we do lots of things when I have time, but it saddens me that I was too sick and fatigued to do anything with them. I love that they love me no matter what, but I feel like it's so unfair to them that they didn't have the mommy they should have had. If the pandemic wasn't around we probably would have taken trips to the park or beach at least to let them run and play. I couldn't do that during chemo. I live in a low vax city and our parks are packed with unmasked families. I think those unvaccinated are starting to come around, but it's a little too late isn't it? My family had to lock themselves away for the summer for my sake.
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Well, I guess I'm relatively lucky--we are financially quite comfortable. When I was diagnosed in 2015, I'd already been retired from law practice for three years and was performing (guitar, dulcimer, vocals) with my Madison, WI singing partner at various coffeehouses & festivals--even going to a gig 90 miles away 2 weeks after lumpectomy and to regional folk music conferences just before and a few months after radiation. I got to sing & act in the Chicago Bar Assn.'s annual "Bar Show" musical through 2019. We got to take a Mediterranean cruise at the end of 2015; I traveled to Europe for continuing legal ed. trips, and we traveled to London for Thanksgiving week 2019. We dined at least once or twice a week at our favorite neighborhood restaurant (which had special New Year's Eve, Valentine's Day, Super Bowl and Oscars parties), and ate at some elegant Michelin-starred restaurants in NYC & Chicago. Life was great...until everything shut down. We paid our housekeeper even though we had to give her two months off (and her husband caught COVID at the V.A. hospital's dialysis center. He recovered from COVID but is getting weaker & weaker. He was on the transplant list, supposed to get a kidney at the V.A. in Iowa City this past January. Obviously, the door slammed shut on that too).
My husband Bob had to spend every other weekend at his S. suburban hospitals, seeing numerous COVID patients even though he was not on the COVID wards nor in patient rooms in the ICU. Meanwhile, in Mar. 2020 I was supposed to get my annual ophthalmology checkup--but my doc decided that since cataract surgeries were canceled, it was a good time to retire. My primary care doc saw me in Feb. 2020, but a month later he caught COVID, and after 7 weeks on a ventilator died in early June 2020.
I had to wait till June to see my ENT for what could have been a life-threatening vascular problem in my ear (she had to cancel three times before that). On July 1, I had a series of ear & brain MRIs, that ruled out that life-threatening AVM but revealed a "small mass or possible hemorrhage in the R orbital cavity." The radiologist report advised an ophthalmic followup. But before I could do that, the very next day I awoke with a large floater in my L eye--and knew it might be a retinal detachment. We have a close friend who is a retinologist, who got me in the next day after that. He ruled out a retinal detachment, but said, "your ophtho retired before you could get an exam, so let me dilate your R eye too." That was the longest and ominously quietest eye exam of my life.
My friend broke his silence. "I saw a tumor, about 3-4mm, behind your right iris. You had breast cancer, right?" I nodded and asked if it could be mets, and he answered that was highly unlikely--but what he saw was consistent with ocular melanoma. My stomach dropped into my toes. He referred me to the top ocular oncologist in Chicago--though he said ideally I should go to Philadelphia to see the top ocular melanoma specialists in the country--but it was unsafe to travel.
I saw the ocular onc a few days later--and he confirmed that what he saw was consistent with a choroidal melanoma: "95% certain." I asked about biopsy, and he gently explained that wasn't really possible in an outpatient setting, lest he disturb the highly vascularized tumor--ocular melanoma, when it metastasizes, does so through the bloodstream. The biopsy, if performed, would be for genomic markers to determine what if any immunotherapy might work once it spreads. I asked whether I'd have to lose my eye, and he replied that for a tumor that small and toward the front, "plaque brachytherapy" (implanted radiation) had just as high a survival rate. (I didn't ask "how long do I have?" because I knew it was deadlier than a skin melanoma).He sent me home with an after-visit summary. I read the summary and saw "ciliary body melanoma." I thought maybe that wasn't so bad--but it turns out that of the three possible locations it had the poorest prognosis.
It took a couple weeks to make a tele-appt. with ocular radiology, but they did craft the plaque and it was implanted in early Aug. 2020 and (after I had to isolate in the guest room because I was radioactive) removed 5 days later. (I was alone for both surgeries--Bob had to drop me off at the entrance and be called to come get me after). Was rapid COVID-tested both times. Recovery was slow & painful, and I mostly wore sunglasses to hide the swelling & redness until I looked presentable. I was told to expect to lose perhaps 40-50% of my acuity, but it would take a while. I've been getting followups every 3 months. Bob was allowed to come with me (as a "consulting physician") exactly once before the hospital system clamped down again. It did shrink a little, then grew a little, but seems to have stabilized at 2.7mm. The ocular onc said it's more in the iris than the ciliary body, so my survival prognosis is comparable to that of my breast cancer--and over the next three years it might shrink some more. I lost about one line of vision on the eye chart, which was better than expected. But I'm living waiting for the other shoe to drop.
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ChiSandy, That's a lot. Just a lot.
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@ChiSandy - Holy cow! I've never heard of ocular melanoma until now. Sounds terrifying.
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But by summer 2020, the snows melted, stores began letting people inside with masks & social distancing, sidewalk & patio cafes made dining out possible again. Social distancing & masks became second-nature, and we even cautiously dined indoors at low-capacity restaurants we trusted. But Thanksgiving was just us two eating takeout; and Christmas was a Zoom call. New Year's Eve? Fuhgeddabout it. And then came the vaccines, which at first were like the Hunger Games. If anyone had told me back then that less than a year later doses would be discarded because idiots refused to take them, I'd have questioned their sanity (instead of the sanity of those who are refusing them). The vaccines, plus the mitigations, did start pushing the numbers back down, to the point where hibernating restaurants reopened and mitigations began easing. By June there were no indoor capacity limits, and suddenly masks were "optional for the fully vaccinated." (Too soon, I would tell myself). We even went to a couple of ball games and I took one overnight trip to hang out with my sister in NYC. Right after that, Delta....
Anyway, by the time I thought to make a "bucket list" (after seeing the movie of the same name) I realized there wasn't much left to put on it. I've led a pretty lucky pre-pandemic life, breast cancer notwithstanding. I've never wanted to jump out of a plane or zip-line, and have no desire to visit Antarctica. I probably won't get to have grandchildren--my son is getting married in April...in New Orleans. The venue is still standing and reopening this weekend. But we're getting increasingly discouraged that the COVID numbers there won't have reversed in time by then to have any guests who aren't fully-vaccinated. We've been lucky enough to get our boosters, but anything can happen, Who knew back in June that there would be breakthrough cases? As long as too many people value their "freedumb" over their families and communities and dig ever deeper into the online rabbit hole (what they call "doing research") to find the few anti-vax doctors (sort of analogous to the 3% of "scientists" who are climate-change deniers) who will tell them what they want to hear and reinforce their wacko biases, we'll never even be able to bring this down to an endemic seasonal level, let alone eradicate it.
My music career is pretty much kaput. Even though some small venues are reopening for live shows, the bigger fish higher up on the folkie food chain are grabbing the gigs we in the trenches used to depend on. I don't have video equipment adequate for decent livestreaming--and besides, who's gonna help me run it? I'm alone in the house being monopolized by my cats--especially the 14-yr-old with IBD (possibly lymphoma) who, when not puking, insists on sitting on my lap & laptop, with his increasingly long claws trashing my forearms. The 16 year old eats when she wants, and is incredibly finicky. My singing partner had to pivot to a day job (disinfecting a print shop) to take care of his wife--who has severe fibromyalgia and can't leave the house lest she get infected. My husband had wanted to retire--in 2019, we had planned a round-the-world Viking cruise...for this year. Nope. No floating Petri dishes for us--especially when no ports of call will let us off the ship. My son & his fiancee had, in Jan. 2020, booked a trip to Spain for her 30th birthday the following June. Not happening. 2020's Bar Show was online--a short series of excruciatingly difficult to record videos (half of which had to be scrapped due to current events). 2021's will be live, in spring 2022...if it's safe again. A big "if."
And so many of our favorite haunts are no more. That Michelin-starred skyscraper-top French restaurant? Closed Dec. 31, 2020. Our little Mom & Pop French BYOB? Closed in July, supposed to reopen Aug. 10...still closed. And Cellars--our favorite neighborhood restaurant where for its entire 15-yr existence we celebrated milestones (including Bob's 70th birthday--mine happened during the lockdown--and our 50th anniv, this past June), consolations (my FIL's post-funeral repast, as it was his favorite place for the two years he lived with us), wine tastings & dinners, and brunches....served its last meal this past Monday. Empty storefronts not just in the neighborhood, but even along the Magnificent Mile.
What infuriates me is that life could have been so much closer to normal, with even a light-at-the-end-of-the-tunnel future, if not for the COVIDiots and their political enablers. Their idea of a light at the end of the tunnel is their own flashlights...but ominously, it might be the headlights of an oncoming train.
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As a BC cancer patient, I am so happy Biden has put forth a broad and encompassing public policy to deal with this pandemic.
This is not about freedom or personal choice. It's about protecting yourself and those around you — the people you work with, the people you care about, the people you love.........My message to unvaccinated Americans is this: What more is there to wait for? What more do you need to see? We've made vaccinations free, safe and convenient. The vaccine is F.D.A. approved. Over 200 million Americans have gotten at least one shot. We've been patient, but our patience is wearing thin. And your refusal has cost all of us.
We finally have a federal public policy, which is long overdue.
Stay well & stay safe,
Jane
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Chi-Sandy - London is just as bad, at least central London. I was in the City yesterday for an office visit and lunch with a friend and it was dead dead dead. The open air food area we like to go to would have been heaving with Thursday lunchers two years ago and now it was sad seeing some of the food stalls either closed for good, or folks waiting for someone, anyone, to walk by. One place was charging £4 for a bottle of water in an attempt to recoup money I guess. No buzz, no nothing happening. We used to complain about the spanish school tour groups and other tourist hordes in the area and now its just sad. Plenty of department stores and other places have closed up shop too.
Music venues are another issue entirely. I was supposed to go to a show last Sunday with a friend but I couldn't find the Covid policy for the venue anywhere (and its my most favorite one in town). The gig was likely attended by mostly 55+ yr old men so what, no masks required? My friend decided to not come down for the show either after I told him I couldnt risk it before flying. Our next gig together is in November at a larger venue that is far more likely to have singing and dancing involved and even that I am hesitant about. I want to go out and see things but not like this, even if I did slap on my good N95.
I think what I miss most is spontanaety. Its a little better now that that some pre-booking things have gone away, but you never quite know with some pubs and restaurants. Booking anything in advance is fraught with potential issues, none moreso than travel, and customer service is non-existent cause: covid. So in the end you just give up trying to do stuff and stay home, because either the place closed, has reduced hours,or you just cant be bothered to deal with non-masking / muh rights folks and the anxiety that can cause.
Its going to take years for the mental, social, and economic impacts from this to reset everyone at a new level. Its like in Back to the Future II where they draw the Alternate 1985 line after Biff gets hold of the sports almanac and becomes some mafioso type ruler.
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Wow. This thread is really opening my eyes to what this is like for everyone. So grateful for this perspective
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ChiSandy, crap, I'm so sorry you've been hit with this.
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My grandson started back to school this week, freshman in high school. Might have covid. He was vaccinated as soon as he could for age group. His younger brother is 10, not vaccinated. Everyone else in the house is vaccinated -- total 4 kids 10-21, and 2 parents.
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Wow, ChiSandy, that’s quite a lot you have been through in the past 18 months! Hugs!
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Ugh, this just came up in my news feed. I can't believe some people think it's not really a problem.
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Wow chi, that is alot.
My daughter and I were talking last weekend and we actually found a silver lining in the pandemic. My husband was doing active treatment when they locked us down. She came home, and we both worked from home and we were with him 24/7 for those last 3 months. My son also popped his head in the door almost daily too. Had we been in normal mode, he may have been left alone while we worked, and while we worked who could take him to treatment? Radiation? It may have felt more like a chore but it was different during this time. My employer never charged me with off time if I drove him to treatment and came back on line. Not once! Plus, we found that when you work from home, you are never really away from work, so there were times I worked in the evening to stay on top of things.
It's this new world normal that is upsetting to me. With so many being unvaccinated I read it may take another 2 years to get out of this. What's there to look forward to? That's why I'm angry too like so many of you.
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Being there and bearing witness as someone's life is drawing to a close is a singular experience. It is beautiful and terrible all at the same time. I wrote this poem after caring for my mother during her final illness. It's called Last Light.
To recognize
that quiet time
before the shadows fall
across their face
one last time.
To know
that you were there
to witness
the last light
is a blessing
and a curse
that will not leave you
unchanged.
Your husband was fortunate to have you there, ctmbsikia, surrounding him with love. It is one of the most meaningful acts we can do for another human being; to help them die.
I think that's one of the most tragic things about this Pandemic for me. That so many have died alone.
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Just saw this headline on the front page of Washington Post. "Unvaccinated people 11 times more likely to die of Covid19, CDC report finds."
It's beyond me how people don't look at that and think "holy crap, I should be vaccinated". It defies all reason.
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From comments I have read from anti vaxxers 'reason' is not their strong suit. I am ok if they choose to not protect themselves as I am ok with them not wearing seat belts but without a seat belt they only endanger themselves.
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For the unvaccinated (we are not all anti-vax btw), some may not believe they fall into a super high risk group simply by being unvaccinated. Plenty of people live in rural areas, where distancing is common and preferred, others take safety measures seriously and have done so successfully for quite some time now.
Personally, I find vaccinated grandma who just got back from a cruise far more potentially dangerous than the unvaccinated neighbor who rarely leaves his house.
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Illimae, I specifically referred to "anti" to avoid confusion
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I know wrenn and I don’t disagree, just adding clarification since it’s very much a vax-good/unvac-bad time we are living in regardless of individual behavior, which is the reason viruses spread in the first place. Sorry, I do take the generalization a bit personally, I shouldn’t but sometimes it’s just a quick reaction.
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I'm vaccinated and rarely leave my home in the suburbs. But I'm a cancer patient, so I'm at higher risk. I'm not elderly so that lowers my risk. You can drill down and find subgroups that are less/more risky, but it's simply the unvaccinated (for whatever reason) that have worse outcomes than vaccinated.
I can't not have cancer or get younger, but getting vaccinated reduced my risk of serious illness. If you can't get vaccinated, there are other layers of protection (masks, distancing, avoid public indoors, etc.). I still do all of those, but unless medically exempt, people need to get vaccinated. Even rural areas get outbreaks.
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illimae - Why do you take it personally? Even when I thought I couldn't get fully vaccinated, it didn't bother me when others called for people to get vaccinated. It bothered me more that I really wanted to get that second dose, and others just refused to be vaccinated.
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illimae,
I’ll add to the chorus. Please don’t take it personally. I doubt that there is a single person on bco who looks at those who have a legit medical reason for not being vaccinated as anti-vax! One great reason for getting the vaccine is to help our fellow citizens who cannot get vaxxed!
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And there are people like transplant patients who don't benefit from getting vaccinated.
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I’m pro vaccine if you can and want, I just get a little miffed at blanket thoughts and statements that the unvaccinated are selfish kooks keeping the pandemic going, when it’s really more of a subset of people who insist on living like it 2019 and worse, those who flat out refuse to take even basic precautions. But I don’t feel like anyone here thinks that of me, I’m probably a broken record on safety, lol, just saying we’re not all bad and not all to blame.
I did just find out that a good friend has covid, she’s young and goes to nightclubs and other gatherings. She is vaccinated, it’s frustrating.
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Well, it's mainly the unvaccinated (that includes ineligible or immunocompromised) who are overwhelming hospital resources now.
The anti-vaxxers/anti-maskers are the selfish kooks.
I'm frustrated with the vaccinated who aren't careful (related to a few).
Mask and vaccine mandates minimize the problems with the latter groups which in turn protect the ineligible and immunocompromised.
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The fact is, you (anyone) have much less to worry about in terms of a vaccinated person spreading the virus to you.
We were asked to provide information from reliable sources, so here goes -
“...vaccinated people who do get infected are up to 78% less likely to spread the virus to household members than are unvaccinated people. Overall, this adds up to very high protection against transmission, say researchers.“
This was research into people vaccinated with the Pfizer vaccine.
https://www.nature.com/articles/d41586-021-02054-z
I am a vaccinated grandma who travelled and I will again. I wouldn't take a cruise but I do fly. 3.5 hours on a plane in a seat where I'm isolated from others and masked (on United, where they now have mandatedv vaccines) versus ten days or more on a ship with a large number of people seems much less risky.
I am engaging in activities in accordance with what the law in my state, the CDC and my doctor allow.
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