I'm fighting in my mind on what type of cancer I tell people I have. Family knows I have anal cancer a couple friends but that it. I feel uncomfortable telling people I have anal cancer...even though everyone has an anus. What do all of you tell people when the topic comes up?
I've been monogamous for 40 years, but prior to that I had me a big time. I've never been embarrassed about it or made it a secret. In my era the Big Fear was pregnancy so I was vigilant about taking the Plill, but rarely made my partners wear condoms, so I'm lucky I didn't have way more problems.
What haunts me most is my attitude toward HPV. I never knew much about it, just that everyone was being exhorted to get their kids vaccinated against what I stated assertively was a 'totally preventable disease' and that the vaccines were just a big fat moneymaker for Big Pharma.
Now what embarrasses me is my (former) lackadaisical attitude toward educating myself. And my pushback against a vaccine that, had it been available to me in my youth, would have saved me all this awfulness.
I'm okay with my cheerful promiscuity. Not so much with my ignorance.
:( Suz
Sarah, cutting someone out of your life (and being polite about it too) was so brave of you. Sometimes it is extremely difficult to move on gracefully and without rancour from old friendships/acquaintances, but people who aren't there for you when the going gets tough aren't there for you full-stop.
And you are spot on about the association with sex. You are not the only one.
Irene xxx
I was really nice about it Irene. I just explained how she made me feel-she tried to turn it back on me saying I never called her, but I simply pointed out I had been extremely ill. I just left it at that. What I did do was type out a message saying how I really felt, which wasn’t so polite, but I never sent it. It got all my hurt feelings out of my head without hurting her, and I moved on.
I’m quite ruthless about cutting people out of my life if they’re not good for me. I know who my tribe are and I hold them close and am fiercely loyal.
Sarah xx
Hi ridetbred
i really can identify with what you’re saying here Suz. Much the same as me in my youth and my ignorance. If I had the same knowledge then as I have now, life could be so different but I try not to look back. I could never in my worst imaginings believed I could have ended up where I am now. I wouldn’t have believed it possible.
I’m lucky to be married for the second time to the most wonderful person who adores me without the sex but it’s hard to be the reason for the lack of it.
Can I take this opportunity to say I LOVE your hair?! My style is virtually exactly the same as yours, but grey, and I lack the courage to do what you’ve done!
Sarah xx
I usually tell people, “It was a type of colorectal tumor, but not a typical colon cancer. It’s more rare, but also very treatable and even curable.” I don’t want anyone’s pity, and I figure telling them “it’s not a typical colon cancer, it’s very rare” will prevent them from telling me about their best friend’s sister’s boyfriend’s third cousin who took herbal supplements for colon cancer and was cured in two weeks ;) . Honestly, that line works really well and usually moves the conversation forward and away from the specific diagnosis.
There are literally 5 people, outside of my medical team, y’all here on this forum, and two friends who I met via the Anal Cancer Foundation, who know it’s anal cancer, specifically. The “non-cancerland” people include my very oldest and dearest friend, who dropped everything to come stay with our kids while I was going from one appointment to another during the diagnosis period, another friend who is a cancer survivor and stayed with me in Houston for a week during my chemo-radiation, and 3 other close friends who know me well enough to not jump to conclusions based on a Google search. One is a doctor, and he just shrugged when I told him, said, “As far as cancer diagnosis goes, it’s not the best type, but it’s absolutely not the worst type. You’re going to go through treatment and you’re going to be fine.” Ever since then, in between translating some medical jargon on occasion for me, he makes me laugh with butt jokes. There are so many…
I’ve had more partners than just my husband, but I was always super-neurotic about condom use with all partners until my husband and I were married. My husband’s had fewer partners than I, so who the heck knows what happened. When the HPV vaccine first rolled out, I was just a little older than the upper age limit (that has since been changed), and I’d met my husband and was fairly certain he was “the one” for me. I didn’t see a need to argue to be vaccinated out of the age range. I’d also never had an abnormal Pap smear.
One of my doctors, when I asked how this happened, said “Hey, it could literally happen to any of us who have been sexually active at all, and the info out there about risk factors is very misleading and keeps people from seeing doctors, because they assume they don’t fit the risk profile.” And another doctor said “There’s risk even when we use condoms, because there’s a lot of sexual contact that happens before the condom goes on or penetration happens.” He said HPV is just so prevalent that it’s really just a matter of luck for most people that their immune system clears it or doesn’t.
So to circle back to “what I tell people,” I’m only completely honest with people who know me very well and won’t make judgments, but who ALSO know these medical facts about HPV. I don’t need to deal with anyone’s judgmental comments.
The doctor who told me “a lot of sexual contact happens before the condom goes on” said it’s the medical community’s job to change the conversation about risk. I agree. We, as survivors, can choose to speak more openly about our diagnosis, and while I do think it’s helpful, it isn’t our responsibility. If I can be transparent with a few people, I feel like that’s enough. I don’t have to be the poster child for anal cancer specifically. However, I’m more than happy to talk to just about anyone about weathering treatment, advocating for oneself, etc.
Just my thoughts. In all, I’m so grateful for this community and the freedom to discuss with no judgment.
Peace and very best wishes to you on your passage through this challenge.
Red
Your sense of humor, Suz, is a treasure. It sounds like your friends are as awesome as you. Birds of a feather, and so on…
I agree with you…no regrets of the past.
And yes, only say what you’re comfortable saying! It is not perpetuation of myth or misinformation to just not speak very plainly and openly about it. It’s your own, private health information. It’s the medical community’s job to clear up the stigma. It’s our job to endure.
Hugs,
Red
Oh, thank you, Sarah! Both for the nice compliment about my hair and the identification with the other.
After all the frogs I kissed (kissed....haha!) I'm awfully lucky to have found my prince. We're not having much sex but what we manage is sure nice. I'm just so relieved that he still finds me sexy. Hard to feel sexy when you've been through all this, and your prince escorts you to your DRE sessions.
Suz
Suz,
I’m so glad you have your prince-those of us who have such partners are truly blessed. I am apparently sexy too without the sex though I fail to see it myself-however, I’m very happy this is the case! We have a deep emotional connection and love which transcends any physical stuff, so our philosophy is always not to think what you can’t do, but appreciate what you can!
Sarah xx
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