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How has the Pandemic affected you as a cancer patient/survivor

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  • chisandy
    chisandy Member Posts: 11,407
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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.

  • moth
    moth Member Posts: 3,293
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    ChiSandy, That's a lot. Just a lot.

  • harley07
    harley07 Member Posts: 315
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    @ChiSandy - Holy cow! I've never heard of ocular melanoma until now. Sounds terrifying.

  • chisandy
    chisandy Member Posts: 11,407
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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.


  • jhl
    jhl Member Posts: 174
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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

  • sondraf
    sondraf Member Posts: 1,628
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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.

  • beesie.is.out-of-office
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    ChiSandy, crap, I'm so sorry you've been hit with this.

  • mountainmia
    mountainmia Member Posts: 857
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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.

  • chowdog
    chowdog Member Posts: 190
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    Wow, ChiSandy, that’s quite a lot you have been through in the past 18 months! Hugs!

  • alicebastable
    alicebastable Member Posts: 1,946
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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.

    https://news.stlpublicradio.org/coronavirus/2021-09-10/hundreds-of-st-louis-county-students-catch-coronavirus-as-school-begins

  • ctmbsikia
    ctmbsikia Member Posts: 758
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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.

  • trishyla
    trishyla Member Posts: 698
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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.

  • trishyla
    trishyla Member Posts: 698
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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.

  • illimae
    illimae Member Posts: 5,645
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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.

  • illimae
    illimae Member Posts: 5,645
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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.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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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.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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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.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
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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!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    And there are people like transplant patients who don't benefit from getting vaccinated.


  • illimae
    illimae Member Posts: 5,645
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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.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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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.


  • olma61
    olma61 Member Posts: 1,027
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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.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I know someone fully vaccinated (healthy 50 yo with childhood asthma) who got COVID. He needed extra sleep for a few days and had anosmia for a few weeks.

    Vaccinations are working well in preventing serious illness. Hope your friend recovers quickly.

    ETA: Adding Quebec COVID case/hospitalization data that shows most are unvaccinated in a population with 69% fully vaccinated.

    image

  • chisandy
    chisandy Member Posts: 11,407
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    I do not blame those who cannot be vaccinated for legitimate medical reasons (a very, very few, like our Illi), as well as children too young to be eligible. In many large cities, there is no longer any excuse for the eligible, because local health workers will now vaccinate people at home or workplace. And rural people are playing Russian roulette with two bullets in the chamber.

    First bullet: unless they live truly "off the grid," they will come into contact with others. Unless everyone they contact has not encountered anyone who travelled outside the area (like to a store or church in another town), they are still at risk. The virus is truly a hitchhiker. And the second bullet? Rural hospitals are few & far between, and not equipped to handle any but the simplest illnesses or trauma. Moreover, even if it's possible to be transferred to a larger more sophisticated facility, it's becoming increasingly unlikely to be able to find a bed, much less a ventilator-equipped one in an ICU. And every COVID patient in an ICU prevents an accident, shooting, heart attack or stroke victim from accessing the care they need.

  • chowdog
    chowdog Member Posts: 190
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    ChiSandy,

    ThumbsUp



  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    The antivax conspiracy crowd seem to grab onto numbers like 1 percent because it sounds like a low number. I imagine 11 times doesn't sound like a big number for them. Maybe articles should use numbers like 1100 percent as opposed to 11 times. That might get some to think about it more. Although, I imagine someone saying fake news.... percents only go to 100...... So nevermind the former suggestion?

  • mountainmia
    mountainmia Member Posts: 857
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    Here is the Washington Post article someone mentioned earlier. There is no pay wall on this one, as it's covid-related.

    Unvaccinated People Were 11 Times More Likely to Die of Covid-19, CDC Report Finds.

    https://www.washingtonpost.com/health/2021/09/10/moderna-most-effective-covid-vaccine-studies/

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    AlwaysMeC - It's hard to overcome innumeracy. Even things that seem obvious aren't accepted by them. Don't forget there are people who still believe the earth is flat. A flat-earther man built his own rocket to prove it. He finally got the rocket off the ground and promptly died when it crashed. 🤦🏻

    https://www.bbc.com/news/world-us-canada-51602655

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
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    The flat earth society! Some of my favorite science deniers 😉. I don't remember where I read this but I love it:

    How do we know the earth is not flat? Because if it was, cats would have already pushed everything off the edges. I am thinking ofyou Princess Leigh aka Prinny (my granddaughter's cat 🐈 )!

  • trishyla
    trishyla Member Posts: 698
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    Couple of quotes from a favorite writer/scientist, Issac Asimov.

    "The saddest aspect of life right now is that science gathers knowledge faster than society gathers wisdom."

    "There is a cult of ignorance in the United States, and there always has been. The strain of anti-intellectualism has been a constant thread winding its' way through our political and cultural life, nurtured by the false notion that democracy means that my ignorance is just as good as your knowledge."

    Nothing new under the sun...