Join Us

We are 224,270 members in 83 forums discussing 163,473 topics.

Help with Abbreviations

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 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: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

Page 1 of 20 (598 results)

Posts 1 - 30 (598 total)

Log in to post a reply

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

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

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: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

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 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
Log in to post a reply

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
Log in to post a reply

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: Left, 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: Brain Targeted Therapy 4/8/2018 Ibrance (palbociclib) Hormonal Therapy 4/8/2018 Femara (letrozole), Zoladex (goserelin)
Log in to post a reply

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) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/6/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes
Log in to post a reply

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: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 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)
Log in to post a reply

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

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

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?

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

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: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

Sep 8, 2021 08:00PM Betrayal wrote:

cm2020: My issues pale in comparison to yours. I am hoping that you can catch a break soon and as far as your husband, Karma is a bitch and at some point he will have to pay the piper. ((Hugs)).

Surgery 1/31/2016 Lumpectomy: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 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)
Log in to post a reply

Sep 8, 2021 08:04PM MountainMia wrote:

Thanks, Trishyla. Yeah, I'm angry. My life is fine, and in general I'm pretty healthy. I'm way more fortunate than most people in a wide variety of ways. But I miss my kids and grandkids, I worry about the g-kids in school, heading back without sufficient protection from illness, I worry about their teachers. I miss my old, pre-cancer life, at the same time recognizing how very very "lucky" I was to be diagnosed and treated in 2019. I feel cheated. My husband is 74. We've had several friends and family members die in the last year, ironically not due to covid. But would their treatment have been better, quicker, different in any way if resources weren't sucked up by covid-19? I'm extremely pissed about the Venn diagram overlap of people who claim the right to act as selfish asses and not wear masks or isolate or get vaccinated and at the same time think women shouldn't have the right to make decisions for their own health.

How has covid-19 affected me, as a cancer patient/survivor? It's made my world much smaller. It's left me angry and resentful a lot of the time. It's kept me from seeing people I love. None of that is healthy.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
Log in to post a reply

Sep 8, 2021 08:13PM illimae wrote:

I’m one of the lucky ones who has not been affected other than virtual follow ups instead of in person. I had brain surgery in January of 2020 before everything got crazy and MDA is strictly a cancer center, so their strict precautions and absence of regular medical patients resulted in only minor changes like masks, visitor limitations and food service. I do realize that many others did have problems, which is really unfortunate and hopefully not detrimental.

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+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary 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+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Sep 8, 2021 09:09PM Harley07 wrote:

@wrenn - I'm truly concerned that you may be missing out on badly needed healthcare given your TNC diagnosis and history of diverticulitis. I'm not sure what the situation is in BC, but I hope you can find a relatively safe way to get care. In my area, there are separate ER rooms for each patient. I waited in the room until the CT machine was available so my interactions with others was minimal.

There has not been a significant impact to my life due to COVID. I worked in an office throughout the pandemic, most of the time wearing a mask. I'm pretty much of a loner and am happy to spend time alone or with my husband at home when I'm not working. For the most part I don't stress over what others are doing or not doing in terms of vaccinations, masking, social distancing etc. because I figure I can't change their minds. We did lose several friends over the last year which is an unfortunate side effect of getting older. Their deaths were not related to COVID and their care was not impacted by the virus. I do have one coworker who lost his father to COVID at the end of 2020 which was devastating to his family. On the flip side of life, we welcomed two new babies into our extended family in 2020. Some birthing protocols were changed due to COVID, however, the fathers were present at the birth and able to spend the first days in the hospital bonding with the little ones. We love to travel and had travelled to Portugal at the end of February 2020 and returned just prior to our state's lockdown. We had more international travel planned over the last 18 months which didn't happen. When the world returns to some sense of normalcy, we'll take stock to see if we can physically and financially take those trips.

While my cancer care had some very frustrating hiccups it was not due to COVID and instead was due to a few key folks practicing sloppy medicine in spite of my providers belonging to a Top 10 U.S. cancer center. On the bright side, I saw more of my adult son over the past 18 months as he escaped his tiny urban apartment for the relative space of the suburbs on several multi week visits. While he generally refuses to talk about it, he has an incurable, life threatening illness so I was thrilled to spend time with him.

In the past 48 hours, I found out that my SIL has been hospitalized with a breakthrough COVID infection. She is hospitalized (not intubated ) due to several comorbidities and COVID. My brother is waiting for his test results, but fully expects to test positive. BOTH ARE FULLY VACCINATED. I'm not sure I would call this a silver lining, but my SIL has been experiencing seizures the past 2 months and her healthcare team has brushed off her concerns. Now that she is hospitalized the doctors are paying very close attention and running a series of tests. We expect to know more within a day or two, but initial results indicate a very poor long term outlook. Nevertheless, at this point my brother is just relieved that's she is getting appropriate medical care and no longer suffering.

All in all, no big impact due to COVID, although I know I'm luckier than many.

Surgery 11/5/2020 Lumpectomy: Right Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/19/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
Log in to post a reply

Sep 9, 2021 07:34AM wrenn wrote:

Thanks Harley, It is a bit better today. I too think that the pandemic hasn't impacted me as much as many but just reading your post made me realize that it does still make a huge difference. I hope your SIL is ok.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

Sep 9, 2021 07:37AM - edited Sep 9, 2021 10:22AM by wrenn

Reading xxxxx interpretation that Covid was not an emergency reminded me to use the term "pandemic" to remind me that all pandemics are emergencies. "Covid" might just be seen as a flu by some but pandemic by definition refers to "all" demic. It has been a disaster for most countries on the planet.

Edited to remove members name at request of mods

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

Sep 9, 2021 07:57AM - edited Sep 9, 2021 07:58AM by PamEP

Due to the shutdown I postponed my mammogram one year. In May 2020 I went to the Outpatient Pavilion where such tests are performed, and it was mayhem, so I walked away, which was in no way discouraged by the outside front desk. This May I discovered a lump that was found to be IDC. Interestingly, I read this morning that Amy Klobuchar also postponed a mammogram during the shutdown and was diagnosed with Stage IA BC earlier this year. She had a lumpectomy and completed a course of radiation. Good to have a Senator who has experienced what we are all going through. Any stats on the increase in BC diagnoses this year due to the shutdown?


Dx 7/26/2021, DCIS/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 8/6/2021 Lumpectomy: Right; Lymph node removal: Sentinel
Log in to post a reply

Sep 9, 2021 08:47AM Sadiesservant wrote:

It's been a mixed bag for me in terms of impacts of COVID. In some ways I have been very fortunate. I have been able to work from home since March of last year and have not experienced the financial impacts that many have faced. However, it has had a profound impact given my situation.

I have not seen my oncologist in person since January 2020. I'm not sure that it impacted my care in any way but it has added a layer of stress as I try to ensure that I am providing the right level of detail in terms of how I am doing, feeling, etc. It was kind of comical when it came to the NP assessment of how I was doing on Xeloda. Not sure how she could accurately assess hand and foot syndrome over the phone! LOL.

Now, my MO is on a six month research sabbatical so I'm a bit adrift in terms of may care. I'm scheduled to see someone else in October (four weeks after the scan I had on Tuesday - hope he doesn't think I am waiting that long to learn the results). My MO is wonderful and very accessible so this situation of not having a direct line is daunting to say the least. While my MO may have gone on sabbatical regardless, I suspect it was, at least in part, in response to the stress and strain all health care workers have experienced during the pandemic. They are all burnt out and so I'm sure he welcomed a break.

I've also struggled with the lack of clear direction and information for the clinically vulnerable. I felt fortunate that early on they decided that I was in a group that should be vaccinated first but then things started to go sideways. Our Provincial Health Officer made the decision to space out the first and second shot to 12 weeks from the recommended 3 weeks in an attempt to get first doses to as many as possible. This despite early evidence that those with compromised immune systems had a reduced response to the vaccine and should have the shots at the recommended intervals. The guidelines quietly changed to three weeks for cancer patients but by that time I was at more than 11 weeks between doses. Then to add to the angst, they ran short of Pfizer for a brief period and I ended up having Moderna as my second dose despite my protestations. This has all left me a bit at sea, not knowing how well covered I am, particularly as I was on chemo at the time of my vaccinations.

The biggest impact, of course, has been the limitations that COVID has placed on me in terms of my ability to enjoy the time I have. There have been restrictions to travel, restaurant closures, etc. And with an unknown immunity status and a compromised lung, I don't feel I can do many of the things I hoped to do. (Add to this the fact that, given the decision about mixed doses, many of the places I would like to travel to won't recognize my vaccine status.) Part way through the pandemic I learned that the mets had spread to my liver so it's hard not to feel time is getting shorter...

Overall I am doing okay but damn, I'd like this blood pandemic to be over!

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
Log in to post a reply

Sep 9, 2021 08:50AM Trishyla wrote:

Oh, I'm so sorry you had a delay in your diagnosis, PamEP. I did see something about an uptick in cancer diagnoses after the lockdowns eased. Not sure where, though. I'll see if I can find the article.

I'm also so sorry to hear about Senator Klobuchar. She's a really cool human being who's apparently liked by just about everyone in the Sena6, bo matter their political affiliation. That's almost unheard of.

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: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

Sep 9, 2021 11:05AM SondraF wrote:

I've tried to look at the pandemic from a positive point of view. Im lucky that:

- I was diagnosed and had my hospital incident late fall/early winter of 2019 and the pandemic gave me time to heal in private and not feel like I was missing out on concerts and travel or had to take time off work

- I had the ability to change my care, and to get better care, as soon as I saw which way the wind was blowing in the public system (faceless MO conversations, one treatment suspended for six months, letrozole supply problems at one point)

- Ive been stable on my current line of treatment, and was able to get in for BSO surgery when cases were lowest

- The pandemic has accelerated WFH arrangements/acceptance to the point where its a viable future option should I change jobs, and with my current job I dont have to go back into the office ever again if I don't want to which makes it easier to manage MO visit days or any other things like exercising or laying down if I feel tired

- Ive found some new hobbies and enjoyment from homebody activities (even if there were some tough days in there!)

I only know one person who got Covid out of all this time, though a close friend had several family members die (all in their 40s or 50s and fit) in South Africa. Covid almost sounds as much of a crapshoot as cancer, at least until they figure out why some folks get it worse than others. But its also prevented me from seeing my own family for two years and its really hard to talk about cancer and mortality on the phone. My brother got sick with head and neck cancer and my parents were shuttling back and forth across half the US at the height of covid to help take care of his kids while he drove 6 hours to his treatment facility. I should have seen them in June but we had to postpone the trip due to UK government advice which made getting insurance impossible. Now the UK cancer travel insurance market has been severely impacted because of covid, though I think I found a solution by finding a US based provider.



"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy 11/29/2019 Ibrance (palbociclib) Surgery Prophylactic ovary removal
Log in to post a reply

Sep 9, 2021 11:37AM Moderators wrote:

Dear Members,

As a reminder we ask that you maintain the goals of the OP when posting on this thread and in general we request that you not reference other members by name and what they posted on other threads. We appreciate your understanding.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Sep 9, 2021 12:08PM moth wrote:

I was diagnosed with mets right before lockdown so I've been going to all my treatments, appointments, biopsies, getting results etc by myself. I've sort of gotten used to it but it is still weird when once in a while I see a person protesting at the door at being refused entrance: "but she has cancer, I have to go in with her & support her!!!! " and I'm like "dude, we all have cancer, we're all in here alone" and then I remember - oh right, that's not normal.....

My appointments have mostly been in person and I was damned lucky to get into a clinical trial just before lockdown - because literally days after they randomized me, all new trial admissions were halted for the pandemic.

The bucket list - well. That's just not a thing unless we reframe that as 'cleaning out closets and not leaving a mess behind' which you know, might not be such a bad goal but it's not exactly what bucket lists bring to mind, is it.

It's been very isolating & while I'm a very introverted person, even I feel it. Between friends ghosting me because of cancer and friends drifting off because as far as they're concerned covid is over so they're travelling & going to wine country & doing little parties etc etc which just means that they keep becoming *more* unsafe for me to see.... it's gotten hard. I'm suddenly noticing how everyone is just gone and I think bored of the cancer lady & her crazy level precautions.

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- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
Log in to post a reply

Sep 9, 2021 12:34PM Sadiesservant wrote:

Moth, I had to laugh at your description of the bucket list. I’m single and my mom (we live together) is 90 so getting rid of stuff has become a top priority. And that’s been impacted by COVID as well. My mom was a “collector” so it’s not junk but garage sales, flea markets, etc. are a bit tricky. Selling online is a slowwwww process!

I hadn’t realized that about trials….

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
Log in to post a reply

Sep 9, 2021 02:30PM Chowdog wrote:

I am mostly disappointed in and angry at how the society has treated people with underlying conditions such as us during the pandemic.

In 2020, it was the narrative of "only old people and people with comorbidities suffer from severe covid. They should just stay at home."

Now with vaccine, the narrative has shifted to at first "I have done everything I can. I masked, stayed at home and am vaccinated. I am done with the pandemic". When being confronted with the idea of protecting immunocompromised people and kids under 12, they changed the narrative to "immunocompromised people always had to protect themselves, even before Covid", "kids are low risk" or "once vaccinated, it's all about individual risk reduction".

Well, I am not sure what kind of rock these people have been living under, but I sure did not have to self isolate during the flu season despite my subpar ANC count.

When I tried to educate these people, they throw out the "learn to live with virus. covid isn't going away. it's endemic.".

It hurts me even more when some of MDs & MPHs are saying the same thing on social media. Some even make fun of those who have remained vigilant.

I saw this on twitter today from Dr. Nicole Basta (some of fellow Canadian sisters may have heard of her): "When I hear "We need to learn to live w/the virus". It really sounds like "I have access to every available resources to ensure my family stays safe and healthy. I am willing to pay the price for letting #COVID19 spread-as long as it's someone else's child/family that pays."

So, how has the pandemic affected me? it makes me even more cynical.

Dx 6/2007, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/1/2007 Mastectomy: Left, 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: Brain Targeted Therapy 4/8/2018 Ibrance (palbociclib) Hormonal Therapy 4/8/2018 Femara (letrozole), Zoladex (goserelin)
Log in to post a reply

Sep 9, 2021 02:48PM - edited Sep 9, 2021 02:48PM by Trishyla

I'm with you on that, Chowdog. Those vulnerable members of society need to be protected. That's why everyone who can has to get vaccinated. In my view it's a moral imperative.

Just to clarify what the mods posted, as the OP I encourage everyone to continue to post their rants here. In my mind this is a continuation of that earlier thread. Don't direct your rant personally at others on this site. Rip apart their arguments if warranted. Just make sure your tirade is grounded in fact, not fantasy or whacked out conspiracy theories. Don't want to be sent back to the netherworld.

Have at it.

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: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

Sep 9, 2021 03:25PM wrenn wrote:

I think psychology (sociology?) books will be working on figuring out the extent of this weird behaviour for a long time.

It is all so simple. Pandemics are inconvenient but so easily dealt with. This would have been long gone had there not been an invasion of some kind of strange anti-everything.

Since my diagnosis I tend to think everything is a met or recurrence (one of those lovely cancer gifts) so I was at my NPs office much more often than I have been since the pandemic started. In a way that is a good thing since I am being forced to chill and ride out the little twinges. Stomach aches are gastric mets. Dizziness or headaches are brain mets. Since I was afraid to go out I realized that after cancer it is possible to have "ordinary" health stuff that can be ignored. After all before we had universal health care here I am sure my ancestors didn't see doctors unless it was urgent.

BUT it also means that things that might actually matter might be overlooked.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

Sep 9, 2021 03:40PM SerenitySTAT wrote:

Chowdog - The pandemic did confirm that people are selfish, but I didn't realize how anti-vax some healthcare workers are. I'm pleased to see more vaccine mandates. Pandemic requirement now.

https://www.scientificamerican.com/article/vaccine-mandates-are-lawful-effective-and-based-on-rock-solid-science/

"Do not overlook the little joys!" (Hesse, 1905) 💉💉🐶☕️🛀🖼🥐🌲🎭 Dx 11/2015 IDC L IIIC 10/11 nodes ++-, 12/2015 L Mast, 2/2016 4 AC+12 Taxol fasted, 9/2016 Rads Nodes Chest wall 15+4 boosts, 10/2016 Tamox, 4/2019 Exemestane, 12/2019 Ibrance/Xgeva
Log in to post a reply

Sep 9, 2021 03:50PM Chowdog wrote:

SerenitySTAT, Yes, I don't get the push back against vaccine mandate & vaccine passport. At least biden finally announced some new measures today, albeit about at least 2 months late.

Dx 6/2007, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/1/2007 Mastectomy: Left, 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: Brain Targeted Therapy 4/8/2018 Ibrance (palbociclib) Hormonal Therapy 4/8/2018 Femara (letrozole), Zoladex (goserelin)
Log in to post a reply

Sep 9, 2021 04:22PM AliceBastable wrote:

I didn't know that about Sen. Klobuchar. I'm sorry she's had to go through the whole cancer thing, but am I a turd for being a weird sort of happy that she's one of us, since I like her?

My husband and I both had low-paying jobs, mine at a not-for-profit and his at the state government, in one of the lowest-paying states. I'm retired now, so it's minimum Social Security and a tiny pension as my income. We've always gone without a lot of things to finance our vacations, which are road trips in our one old car, staying in modest lodging, and going to a lot of state parks or occasional pre-planned splurges to historic sites. His job is super stressful and I am so pissed that we couldn't travel at all last year even though he had to keep working as an essential employee. It's not up there with getting sick or losing loved ones, but it is a stressor that makes all the other daily sensible restrictions even more annoying.

Maybe the Mods will delete this, but I keep thinking how someone who had built up a good reputation on this site decided that THIS was the hill on which they wanted to kill that reputation. How sad, and what a waste. Lives aren't the only thing lost to Covid.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Sep 9, 2021 04:32PM MountainMia wrote:

Alice, "Lives aren't the only thing lost to Covid."

AGREED. Relationships are irreparably damaged, both online and in real world. Of course, covid isn't the only subject at issue these days, but certainly one at the forefront right now.

The rain comes and the rain goes, but the mountain remains. I am the mountain.

Page 1 of 20 (598 results)