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

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.

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.

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

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.

@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.

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

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!

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.

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 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.

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.

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.

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.