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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.

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Posted on: Sep 8, 2021 03:58PM

Posted on: Sep 8, 2021 03:58PM

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 8/4/2017 Xeloda (capecitabine)
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Sep 8, 2021 04:05PM wrenn wrote:

Thanks Trishyla.

My yearly cancer check was postponed a year (my choice). I am 74 (one foot in) with some other stuff so it felt risky.

I am feeling off with some pain and mild fever today and have a history of diverticulitis. I would normally get antibiotics right away after once having a perforation but I am afraid to go to emerg because they will insist on a CT scan and it will mean waiting hours where covid numbers are up.

I am monitoring

Triple Negative Metaplastic. I had one dose of Cytoxan/Taxotere and was then cut off due to complications. Surgery 8/16/2013 Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Simple; Mastectomy (Right): Simple
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Sep 8, 2021 04:19PM trishyla wrote:

I'll start. I've lost four people who I loved in the 19 months since this all started.

First was my father in law who died last September of complications of a series of strokes. My 78 year old mother in law had to care for him mostly on her own as Mesa Arizona (where they live) was on a complete lockdown due to a massive Covid19 surge. Getting hospice nurses to come in on a regular basis was nearly impossible; many of them contracted Covid due to their close contact with so many patients each day.

Next was my friend Julie. Dear, sweet Julie who battled stage IV ovarian cancer for four years before dying on February 15th at age 43. She loved nothing better than to travel and take cruises and make new friends. Her last year was spent at home, isolated from all human contact except her husband and mother in law.

Then came the news on Mother's day that my friend Ari had died of an extremely rare form of melanoma. Her last ditch effort, a clinical trial at Cedar's Sinai was postponed three times due to Covid19 surges that swamped the hospital and took all the available beds. Ari was 33 when she died.

Finally, my neighbor InaMae died in June of Covid19. One of the best human beings I've ever known. Raised as a Seventh Day Adventist, she chose not to be vaccinated, believing her immune system would fight anything that came along. It didn't and she died gasping for air as she drowned in her own fluids. Her children weren't even allowed to be with her. It breaks my heart to know she died alone.

I wasn't able to see any of them before they died, or attend any funerals except InaMae's. I don't blame the lockdown, I blame the worst public health crisis in over one hundred years. I want it to be over, and I have very strong views on what it will take to get past this.

Be safe. Be well.

Trish


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 8/4/2017 Xeloda (capecitabine)
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Sep 8, 2021 04:20PM melbo wrote:

It didn’t substantially affect my life, but it caused certain situations to be more difficult and could have caused me substantial harm if the dice fell slightly differently.

My port caused a blood clot in my jugular vein in December. Because covid was raging and my immune system was trashed from chemo my MO didn’t want me to go to the emergency room. I agreed with him and waited until the next day to get an appointment for an ultrasound to confirm the diagnosis. Because of some ridiculous scheduling issues and other misadventures, it took almost 24 hours for me to get started on blood thinners.

In normal times I would have been diagnosed and treated within hours of calling my MO and describing my symptoms. Turns out a blood clot in the jugular would get you front line tickets to treatment in the ER because those things are pretty damn deadly. It was only after reading some statistics and doing a little research that I realized just how serious the situation was.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/6/2020 Herceptin (trastuzumab) Targeted Therapy 8/6/2020 Perjeta (pertuzumab) Chemotherapy 8/6/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes
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Sep 8, 2021 04:32PM 2019whatayear wrote:

It's made me real disappointed to see how many people I know who don't believe that we are part of a community and as such, we need to do things to support our community at large i.e. wear a mask, vaccinate. I trust people less. Like take WW2, people gave up stuff to help the war effort. A disappointing # of people will not do the same so we can get past the virus and it's dragging us all down--but they don't care, and for me that's a mindf*ck on top of my general cancer concerns.

It's also really f*cked up to see the number of people who are in our healthcare centers that don't "believe" in vaccines. I mean, if that's your belief, please find a new profession, I don't trust you to give me the standard of care that I deserve.

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Sep 8, 2021 04:43PM chowdog wrote:

Thank you for starting this thread, Trishyla!

I am still thinking about what I am going to write, but I will be reading.

Dx 6/2007, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/1/2007 Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/14/2007 AC + T (Taxol) Hormonal Therapy 1/9/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 2/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Dx 2/12/2018, IDC, Stage IV, metastasized to brain/bone/lungs, ER+/PR+, HER2- Radiation Therapy 3/18/2018 External Local Metastases 3/18/2018 Brain Targeted Therapy 4/8/2018 Ibrance (palbociclib) Hormonal Therapy 4/8/2018 Femara (letrozole), Zoladex (goserelin)
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Sep 8, 2021 05:08PM cm2020 wrote:

For me the pandemic directly affected my surgery. I was diagnosed the same week my state shut down. No one knew if/when cancer surgeries would be stopped. I desperately wanted a bilateral mastectomy. However, due to the pandemic and all the unknowns, after talking to my MO, I had a lumpectomy and radiation. While I know it was the right decision, I am very unhappy that I didn't have the surgery I wanted and that I had radiation. My plan had been to talk to my BS and go back for the bilateral mastectomy. However, my husband (as I have posted in the steam room) totally checked out of our marriage when I was diagnosed. I can't undergo that major of a surgery without some kind of support. Dealing with the emotional/mental fallout of going through cancer treatment with no support from him and realizing he just doesn't care about me and what happens to me has filled my plate. My BS moved to another state in April. So I am not planning on surgery. It is a bitter pill to swallow. A pandemic and shitty husband robbed me of my choice. I will say though that I am very grateful to have not had my treatment delayed, very grateful.

Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2-, IHC Surgery 4/1/2020 Lumpectomy (Right) Surgery 4/1/2020 Lumpectomy (Right) Surgery 4/1/2020 Lymph node removal (Right): Sentinel Hormonal Therapy 4/1/2020 Femara (letrozole) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/5/2020 Lumpectomy; Lumpectomy (Right); Lymph node removal Surgery 4/6/2020 Hormonal Therapy 4/24/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole breast: Breast, Lymph nodes Radiation Therapy 6/10/2020 Whole breast, Radiation boost: Right breast, Lymph nodes Radiation Therapy Whole breast, Radiation boost: Right breast, Lymph nodes
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Sep 8, 2021 05:10PM betrayal wrote:

Yes, we love to travel and had a number of places we wanted to visit on our bucket list. Neither of us is getting any younger and while we were still mobile we wanted to use our retirement time to travel. I retired in December of 2019 to deal with storm damage to our home that occurred in November. We did manage to squeeze in 2 short trips in 2020; in January we had a cruise and land tour of Egypt to make up for the previously scheduled trip canceled by the spring uprising in Egypt a decade earlier and in March we had a short tour of the Greek Peloponnesis. We arrived home 2 days before we went into lockdown. The cruise and land trip we had scheduled for July of 2020 was of course canceled. My DH retired in June of 2021 so we were free to travel offseason now. Hoping that once the vaccine was available (and we were able to get it in March and April), we had scheduled a return trip to Sicily for the end of September but given the fact that the EU has recently shut the US out, we canceled today losing our airfare and 20% of the deposit on our trip. We had a cruise of South America and the Antarctica scheduled for January but HAL canceled that today because Argentina and Chile will not let Americans land or depart from their countries due to our rising covid numbers. We worked past retirement age so we could travel and both had demanding careers so while this is a big disappointment for us, we realize we do have it better than many others. Not looking for pity here, I just need to vent.

I have had to postpone a TKR because I am afraid to be hospitalized at present and this has limited my mobility for the past year. I have resorted to Omnivisc injections in the knee (not fun) to keep me moving but it my limited mobility prevents me from being able to garden as I have in the past. Kneeling is out of the question and a squat is nigh on impossible.

We are still in the process of having our home restored due to lack of supplies, workers, etc and it is coming up to the 2 year anniversary on 11/1 and my home is less than half restored. From the exterior it looks fine but it is the interior that still requires more work. So I am pissed on multiple levels about the lack of community I see in our country, the naysayers and the conspiracy theorists as well as political spin put on this pandemic. I am vaccinated, wear a mask for every outing, have not eaten in a restaurant since March of 2020 (in Greece) and social distance to protect others as well as my self. I am beyond suffering fools at this point and hope no one confronts me about wearing a mask because I will seriously hand them their head.

Trishyla, thanks for creating this forum.



Surgery 1/31/2016 Lumpectomy; Lumpectomy (Left) Surgery 1/31/2016 Lymph node removal Surgery 3/3/2016 Lumpectomy; Lumpectomy (Left) Radiation Therapy 3/30/2016 Whole breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole) Hormonal Therapy 6/15/2020 Aromasin (exemestane)
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Sep 8, 2021 05:12PM wrenn wrote:

Wow cm2020. i can't imagine dealing with that. i think it is good for us to hear about the nightmares. take care

Triple Negative Metaplastic. I had one dose of Cytoxan/Taxotere and was then cut off due to complications. Surgery 8/16/2013 Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Simple; Mastectomy (Right): Simple
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Sep 8, 2021 05:22PM exbrnxgrl wrote:

Yes, for me too, both the pandemic itself and posts I’ve seen here , have really left me disappointed in some of my fellow human beings. I try very hard to understand everyone’s take on the pandemic but some of the things I hear about not getting vaccinated, not wearing masks, etc. are astounding not only in their selfishness but what seems to be a complete lack of understanding that this is a community issue! When did we become so self centered as a society?

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2- Dx DCIS/IDC, Left, 4cm, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Sep 8, 2021 07:28PM trishyla wrote:

I have also had medical treatment delayed because the shutdown. I broke my ankle in June of last year and didn't go to the Emergency room because of Covid. I waited until the next day to go to the walk in urgent care.

The doctor understood, but said it would have been better to get it immobilized right away. I should have had surgery, but couldn't schedule it due to lack of beds and staff. Also couldn't get physical therapy until March of this year. It really slowed my recovery down. It took a year before I felt like I was getting my mobility back.

I really want this Pandemic to be over and I resent the hell out of anyone who is prolonging it due to ignorance, selfishness or just plain callousness about the suffering of others. I'm done done being polite to them.

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 8/4/2017 Xeloda (capecitabine)

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