Anyone else feel guilty?

Anonymous

Anyone else feel guilty?

clarrn

I've been out of treatment for 5 years (other than tamoxifen) and had flap reconstruction in August. All year I have felt guilty that my husband and kids feel anxious about me in regards to COVID. It seems like everyone else can bend the rules but we can't. My daughter was exposed on the bus and in her class and had to self isolate for 2 weeks. She immediately ran to put her mask on and was so worried to come out of her room because she was terrified that she would become positive and spread it to me. She is 9 and it was the worst week waiting for her results. Thankfully her bus and school were strict with masks and there wasn't a single case of transmission even though the 2 brothers reported later that they went to school for 2 days not feeling great before the parents realized. No gatherings at all are allowed in my province from November 23 to Jan 8 so we don't have to make any hard decisions about gatherings. But oh the guilt! I remind my family that I am strong and healthy now, but I still see it in their eyes. When I tell my husband that I am sure I would be fine, he says that he is not and there are no guarantees. I cannot argue with that.

This puts them right back to 2014/15 when they thought they were losing me from cancer, and then sepsis. I felt guilty about it then and I feel guilty about it now. I am only 37, and we have been through more than any of them should of had to walk through. My 38 year old cousin died last fall of colon cancer which started the fears resurfacing for them and then Covid hit.

The good news is that I am a nurse with ICU experience so I should be in the first wave of vaccine distribution after the current ICU staff. And once I get both doses and its kicked in, they should be able to relax a little. Right? I hope so. Unfortunately it's not just us who looks over our shoulders too often once cancer has struck. I wish I could take it from them.

moth

I thought the evidence was that unless you're on immunosuppressive therapy, you're fine?

https://www.breastcancer.org/research-news/esmo-re...

exbrnxgrl

I was going to say the same thing moth said. What does your mo say? I am stage IV and will always be in treatment but am not on immunosuppressive treatment. My mo says that I need to take the usual precautions but beyond that there are no concerns about me being at greater risk than the average person.

I understand how your family feels given your history. My adult daughters had similar concerns and asked me to check with my mo several times. Calmly provide your family with the facts and give them time. Take care

flashlight

HI clarrn, Thank you for being on the front lines during this difficult time. You have a young family and kids worry about the unknown. As a retired nurse I know how scary and unpredictable sepsis can be then add in the BC. All we can do is take one day at a time and try to make the most of it. Guilt follows us all at times the hard part is not letting it control us. Best wishes to you and your family.

MountainMia

I don't believe I'm in a higher risk category. I finished treatment last year. My immune system, as far as I know, works just fine. It's of course possible I have heart or lung damage from chemo and/or radiation, but there isn't any evidence of that to this point. I and my husband are being very careful. He is 73 and in very good health. But we don't see ourselves as being at higher risk.

As the others have said, unless you are being treated such that you know your immune system is suppressed, or you have other risk characteristics, you don't need to feel guilty, and they don't need to feel so anxious.

ErenTo

I don't consider myself higher risk than the general population. Who told you that you're at higher risk? Unless we are in active immunosuppressive treatment (and not just cancer), I refuse to add any additional anxiety to my life.

clarrn

Thanks for the support ladies. I know that most of the their concern is irrational as is my guilt.

My MO said that the evidence shows surgery will suppress my immune system for many months. The length of time it is suppressed is directly related to how long you are under general anesthetic and in my case that was 11 hours. I didn't know this prior to surgery unfortunately, and although I had to have a suspicious lump and enlarged lymph node out (thankfully benign) I may have delayed the reconstruction.

He also said the ESMO recommendations are that treatment for cancer should not be delayed as we know cancer outcomes get worse without treatment and the benefits outweigh known risk. Survivors are not at greater risk for getting Covid but the evidence is still out as of Nov 16th on whether we do poorer if we catch it.

https://www.breastcancer.org/about_us/press_room/n... (says we don't know)

https://www.thelancet.com/journals/eclinm/article/...(20)30400-4/fulltext (says cancer survivors are at greater risk of complications and hospitalization due to covid for at least 5 years post treatment or more than 10 years with blood cancers)

So unfortunately my MO could not tell my dear husband that his concern was completely unfounded although he was trying to be reassuring to him. My husband likes facts and studies and unfortunately there are very few due to the novel nature of Covid.

I also have a recurrent history of viral myositis which has landed me in a wheelchair 3x due to my immune system overreacting to a virus or viruses? -all before I had kids, which is probably more of a concern really. A few weeks of steroids always reverses it.

My husband has never really dealt with his emotions regarding my cancer and I think that this is just a reflection of that.

I am not overly concerned personally for myself if I catch covid. For me there is a level of not-knowing that I am comfortable with. Life is not risk free. Of course I take all the precautions I believe everyone should, and then I continue with my life.

Thanks again for the wise words ladies. I am grateful for this community. And that I have a family who loves me enough to worry.

exbrnxgrl

Clarn, your outlook seems very sensible. Unfortunately, our family members definitely have a certain amount of PTSD from our bc. Time, love and and gently presenting the facts will go along way toward alleviating their anxieties. Take care

ThreeTree

I'm still unclear about our immune situations re Covid also. I had heard what others here have mentioned, i.e. that as long as we are not in active treatment, we are at no more risk than anyone. However, I was at an urgent care not long ago for another issue and they wanted me to do a Covid test and the MD there said it was extra important for me, "because of the cancer". She didn't elaborate and we actually decided not to do the test because I have to get one before getting an upper GI in a couple of weeks anyway, and I wasn't having any symptoms. (I had already had one Covid test when not having symptoms and it was extremely unpleasant to say the least, so I have been in no hurry to get another one.)

exbrnxgrl

ThreeTree,

What does your mo say? The urgent care doc may be generalizing about all cancer patients but as we know, those generalizations don’t apply across the board. I have lived with stage IV for 9 years and am not on immune suppressive meds. I have no other conditions which would contraindicate vaccines so, with my mo’s blessing, will get the vaccine when my turn comes. Please check with your mo.

AliceBastable

I'm probably in a few higher-risk categories because I'm 70 and mildly diabetic, but my cancer history doesn't put me at risk - not even having just one kidney now, which is more of a vital organ than anything else I've had removed or shortened. If my family thought it did, I'd just tell them that no, they're wrong.

ThreeTree

Exbrnxgrl - I didn't ask the MO and I'm not scheduled to see her until January. I agree with you though, about the urgent care MD perhaps putting all cancer people in one group. I've found that most of the regular doctors don't really get a lot or know a lot about cancer and things like the side effects of letrozole. They suggest that I speak with the oncologist, but then oftentimes when I've spoken to her, she tells me that whatever my issue is could be dealt with by a primary care person. They sometimes seem to want to pawn me off onto each other. It could just be a PTSD sort of thing, but I try to avoid the oncologist and that office if I can. They are often dismissive of side effect complaints, etc. and seem to really only be "expert" in giving chemo. I'm probably wrong about some of this, but that's how it has appeared to me since I started this whole mess. I really just try to avoid the oncologist's office unless I really need to see her - it's just too emotional or whatever for me. My sense is to believe the "if we aren't in active treatment we are at no more risk than anyone else" argument. That's mostly what I've read online.