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

Forum: All things COVID-19 or coronavirus — A place to discuss the impact of COVID-19 (Coronavirus) on you and the ones you love.

Posted on: Sep 8, 2021 06:58PM

Posted on: Sep 8, 2021 06:58PM

trishyla wrote:

Has the Pandemic substantially impacted your life as a current or former cancer patient? Please post your stories; heartbreaking, frustrating, even uplifting.

If you post anything about treatments, cures, vaccinations, hospitalizations or deaths, please back it up with research from accepted, credible sources. Your Uncle's neighbor's third wife who posted a crazy conspiracy theory on Facebook is not a credible source.

Angry, passionate, sad are all acceptable, disrespectful is not.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Apr 20, 2022 03:55PM illimae wrote:

edgeofnoreturn, my husband and I have stayed safe from Covid, colds, flu, etc. by employing faiy strict precautions and common sense. We still mask indoors in public, although we’ve been busy and just don’t go out much. I will relax some and try going maskless in the nearby very small town when the situation allows (not when tourists are around). I’m stage IV too and my husband is diabetic, so neither of us are taking risks.

I hope everyone else is doing well 🙂

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 20, 2022 08:12PM gladis wrote:

I'm sad. Yet, I read these and try desperately to suck it up.

I followed my husband to CA for a great job-----Left ALL my friends, my child, my Littles, and sold all our belongings, our home across from a cow mooing meadow.

we said goodbye to our life- and Jumped!

THEN, nine days after we arrived here in British Columbia, we were in lockdown for the next 18 mos(No travel in or out of BC)

This past Feb 17th I found a 1.5cm lump in the shower (IDC) HR + Her (-) for the moment, right?

I'd been feeling really off, and I'd been feeling 'odd' for a long while and started Googling 'heavy boob feel'

The covid vaccine caused a serious health flare. UGH but I did it

.Against medical advice, trying to get to our son's Bosotn wedding after 2 yrs without friend or family ...I risked it.

Please, don't judge, after over 700 days with only us 2...24/7...

and now IDC-

The biopsy one month ago and excision surgery April 11th-I know I'm lucky to even have surgery with the pandemic's surgery wait list and bumping !

The Pandemic brought an already burdened medical system to it's knees here in British Columbia.

A GIANT wait list , my retired neighbor is on a 3 yr ankle surgery wait list.

She was a Banff forester , she can't walk farther that a few feet)

My breast cancer surgeon in Vancouver has scheduled and rescheduled and failed to phone me back at all since my surgery on April 11.

Even 3 msg (one a day they request)

of me trying to self diagnose bruises from neck to crotch (lumpectomy left 1.5cm)

(Thank you mods for reaching out, I was scared out of my mind. Thank you rah for answering, I teared up)

The entire internet does not have any images that looked like me after my lumpectomy- I took the picture down, it was scary- wtf?

and now a seroma??? It is the size/shape of a DOVE soap bar (Sent. Node removal.) Painful but no fever.

Today, 8 days later the nurse phoned to say the office is overwhelmed, he's in the er, and to go to an emergency room. NO worries, while there is no answering service, the phone message says go to the er too)

or see a family dr (he too is unable to see me or anyone on short notice, but booking out a month.)

--I will if This is an actual emergency but it is sketchy, we've been 2x over the last 2 years....

I'm unsure what happens IF I don't get this drained though

(I've read the threads under the topic seroma :-()
But, (pls don't judge, I'm wrecked and lonely)

I'm driving 8 hrs to see my daughter in Washington right now, where she is flying in ...I have to.

I'm also aware, I'm lucky to have what I do, a home, a paid for car, and my husband is working and while the pandemic has /is taking a toll on my mind and my poor marriage..

This pandemic has sucked the marrow from the bones of civilization in myriad ways.

I KNOW this moment before a DX is the best time, the medical data is in someone's lab (ty) or by now on someones desk. for now my family is ok, right now.(ty ty ty)

(BTW: my pap smear from January is still an unknown, taking 16 weeks on average I'm told)

The pandemic allowed me to 'entertain' 2 cancers breast being only the one.

The poor People who perished in a car accident just now in Surry-- didn't get even this much warning

I've been warned. Suck it up buttercup. I tell me this a lot.

The pandemic has made life a microscope view of now, don't look back, don't dream forward without the caveats

Cancer has made a bright yellow highlighter mark with a black thick sharpie exclamation point on life.

I miss me, my idealistic hopeful insides and can't believe that the pandemic losses, the missed everything, the attempt by MOST of us - with a can do attitude, and a hail to science..could entertain this so Ted Lasso like -It's " The Hope that kills you"

Sorry to be sad on this rainy cold day, but thanks for the pandemic subject to give a rant to reflect on what has been a 100 yr historic 2x4 to society.

Best to every soul,


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Apr 20, 2022 09:49PM katg wrote:

Hi all!

I am new in this thread.

I am in California being treated at COH. Today, masks are off in most places. I wear mine always. I agree about the medical offices. At COH, they took off the tape between seats in the waiting rooms that I have only known since diagnosis in July of 2021. Temperatures are not being taken either. Masks are a must. I was supposed to have my right breast removed as a precaution, but my blood clot diagnosis likely from my Feb 9th mastectomy/ovary and fallopian tube removal has postponed the surgery. Would i have needed the PCR Covid test again? Four times this last year. Once more when i was hospitalized.

My sister, older, did not get the vaccine. She does wear masks. She also has not had the genetic test to see if she also carries BRCA2. I have the cancer; our younger sister and her daughter were tested, and they both carry the mutated gene. My older brother was just tested. His results have not come in.

COVID. I had a student worker who used to work in my office, pass along with his father from Covid last year. Many sick. December of this 2021, i went to my older brother's daughters baby shower. I and one other were masked. It was my only holiday outing.

2 weeks later, I was tested at COH and had Covid. Since i had been vaccinated. I mainly got a chest cold. 2 bottles and 8 days of Mucinex. I had a lot of fatigue as well, which combined with the effects of the chemo pill i had just finished in later December.

I was hospitalized mid-January due to low blood counts. I needed a transfusion. They tested me and i was still positive. I was isolated in a "Covid Room". Released after my blood transfusion the same day. No one wants those with Covid to be staying in rooms at the COH. Nearly everyone in there is ill. I had another in a room across from me. I could only use the porta potty in my room. Everything i touched was tossed. The nurse was double masked. I did not know my door had a "Do not enter" on it. That was why my lunch was not delivered till my nurse came back from lunch. It was cold.

As i said above, Feb 6th i was tested again and NO covid. Surgery happened.

No trips for me except November of 2020 before diagnosis. Went to visit my younger sister in Western NY and we traveled 7 states in a Covid drive around. There was little traffic and few people. We booked our rooms on book . WE had a grand time. We wore masks, sanitized and enjoyed time that would never happen like that again.

I do pray all of you get your treatments and keep calling till they see you. COH has been fabulous. There triage team has helped me every time. I hope you have one.

Chemotherapy 8/14/2021 AC + T (Taxol) Hormonal Therapy 1/1/2022 Femara (letrozole) Surgery 2/9/2022 Cryotherapy (Left); Lumpectomy (Left); Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Prophylactic mastectomy (Left); Reconstruction (Left): Aesthetic Flat Closure, Fat grafting, Nipple reconstruction, Nipple tattoo, Removal (Left), Tissue Expander Dx IDC, Left, 5cm, Stage IIB, Grade 2, ER+/PR-, HER2+, ISH, IHC
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Apr 20, 2022 10:37PM moth wrote:

gladis, we went into lockdown just after I was diagnosed with mets & started treatment for stage 4. It's been a crazy ride. I live in Greater Van too....

your neighbour waiting for the ankle surgery might consider looking at the surgical wait list site & asking for a referral to a surgeon who has a shorter list. Many are closer to 4-5 months.

re your seroma - geeez, poor you. In Vancouver Coastal, the ER wait times are also public so maybe see if you can find a time it's quiet & see about popping in but also, if there's no fever or sign of infection, it should eventually reabsorb anyway....

people act like covid is over but the health care system is straining. So many staff burnt out or left or finally on overdue vacations. Everything seems behind right now.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Apr 21, 2022 05:50AM rah2464 wrote:

Gladis your seroma can self absorb, and can take a while to do so. As Moth said as long as no pain, redness, warmth or other signs of infection you should be ok. But I would still push to be seen and to have it drained if necessary. If you have a workout bra or a compression bra/tank that may help. Place additional padding (I used medical grade abdominal pads) over the area with the seroma to create extra compression and that can speed absorption. I had a seroma post surgery and this is what my PS instructed me to do. It resolved after about 6 weeks.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 26, 2022 09:52AM serenitystat wrote:

I've had 2 Moderna and 1 Pfizer shots (4 months ago) . Quebec is allowing 2nd booster to < 60 by walk-in only. Appointments are available for immunocompromised for 12+. I'm not severely immunocompromised, so I haven't made an appointment. That and I lost my healthcare card and just got my replacement. It seems I would benefit from another booster anyway. My husband and I plan to get another booster when my MO okays a break from Ibrance. The Pfizer shot didn't trigger a rash so I'll stick with that. The positivity rate here is in the teens, so the pandemic continues.

Anyway, it's good to see that vaccinations and boosters do help.

🌻 🇺🇦 BCO leaked our private data. 🤦🏻‍♀️🤷🏻‍♀️ . . . . . "Do not overlook the little joys!" (Hesse, 1905) 🐶Dx.11/2015.IDC.L.IIIC.10/11nodes.++- ☕️12/2015.L.Mast 🛀2/2016.4AC.12Taxol.fasted 🖼9/2016.Rads.Nodes.ChestWall.15+4boosts 🥐10/2016.Tamox(2.5y) 🌲4/2019.Exemestane 🎭12/2019.Ibrance/Xgeva 🕊
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Apr 26, 2022 09:04PM jrnj wrote:

The pandemic was mostly a blessing for me. I finished chemo first week of March 2020. NJ locked down about a week later. I went to radiation every day right when the major lockdown happened. I enjoyed getting out of the house when the rest of my family was there driving me nuts. I did the shopping as my husband felt he was higher risk because he smokes and is overweight, idiot. When I went back to work in June, I was able to work from home while starting the horrible AI/lupron, ovary removal journey, which would have never happened before as a state worker. I've been struggling really bad for almost 2 years on AIs, so really need the extra sleep work from home provides. I was able to grow my hair back without seeing too many people. I was able to drive my son to soccer in August AM, because of course high school sports discriminates against working mothers. My kids liked being remote for a year and a third. But they already are socially awkward, so that was the bad part of the pandemic. But am so grateful they were 7th and 9th grade, and not in elementary or graduating in 2020. My 87 yo father and his girlfriend still socialized with us outside. We are just this year back to the office full time, but in July will implement a new partial work from home policy which would have never happened before. The other negative is haven't seen the kids' other grandfather in over 2 years. He won't leave the house or even zoom call. He lives close. Also haven't seen mother-in-law in Florida, but I don't mind that, lol.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal; Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Surgery 1/29/2021 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Hormonal Therapy 3/10/2021 Femara (letrozole)
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Apr 30, 2022 12:27PM dancemom wrote:

I am having problems leaving my high-rise building, now that people are abandoning masks. Yesterday I waited for 6 elevators to pass because all of them had naked people in them. Somehow, standing in a 4×4 box with a bunch of strangers is not considered close contact by entitled people.

I get that some people don't care. I don't go to restaurants. I minimize my time at the grocery store. I dont' go clothes shopping. Fine, go naked at your bar or at a party, but we ALL need to use the elevators, and transportation!!!!!! BE RESPECTFUL OF OTHERS.

Dx 3/16/2021, IDC, Right, 3cm, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 3/29/2021 Femara (letrozole) Targeted Therapy 4/26/2021 Ibrance (palbociclib) Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Radiation Therapy 3/14/2022 Whole breast, Radiation boost: Right breast, Chest wall, Lymph nodes, Other part
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Apr 30, 2022 01:40PM exbrnxgrl wrote:


I feel for you. Unfortunately unless there is law or mandate you can’t make people be respectful. Too many have difficulty considering others.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Apr 30, 2022 04:34PM dancemom wrote:

exbrnxgrl, it funny to see who breaks the law on public transportation. Highschool boys don't wear them, Masters of the universe type don't wear them, Tourists certainly DON'T wear them (what happened to "when in Rome..." and "follow local laws"?). Most families and regular working NYers do, especially those of us with forward facing jobs. But in the residential high rises it's weird. Many younger (20-40) people feel they are already "home" and so don't wear them in the elevators.

Dx 3/16/2021, IDC, Right, 3cm, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- Hormonal Therapy 3/29/2021 Femara (letrozole) Targeted Therapy 4/26/2021 Ibrance (palbociclib) Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Surgery 1/3/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Skin Sparing Radiation Therapy 3/14/2022 Whole breast, Radiation boost: Right breast, Chest wall, Lymph nodes, Other part

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