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How can cancer be no big deal?
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08-05-2017, 11:02 PM
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HysterSister
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Posts: 12
Hysterectomy: May 16th, 2017
Surgery Type: DvH
Ovaries: Kept 1 or both
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How can cancer be no big deal?
I'm struggling.
I was diagnosed with stage 0 cervical cancer in January, and I had my surgery in May. In the time between, no one really "cared" much about my cancer. Everyone brushed it aside with a reassuring, "It will be FINE" and that was that.
My husband was diagnosed with kidney disease almost 4 years ago. As he's had multiple surgeries, treatments, home PD, and now, dialysis at the center 3 times a week, all eyes are on him. He's been the center of attention for years now. I have been his nurse. I have kept him ALIVE more than once, and when he was suicidal, I'm the one who convinced him to get help. I have done SO. MUCH. for him.
And I don't want to sound terrible-- I love my husband. We have always thought we were meant to be together (17 years now) and we complete one another. I don't begrudge him my time and attention. I do, however, begrudge the fact that he has brushed off my cancer.
To come right out and say it, I don't feel like I got enough attention for my cancer. I had CANCER. I have had years of repeated paps for abnormal cells, and have been through a lot of colposcopies and Leeps and two surgeries where I was put under. I've always felt like these were just treated as no big deal-- but cancer? You would think cancer would register. But no.
I have very good friends who came to help out the first two weeks after my surgery. I don't know how I can ever repay them. And I've got a group of friends that I can count on for support. But my family (mother, father, sister, brother, extended family) didn't do a single thing. No cards. No flowers. No acknowledgment of what I was going through. I became estranged from my best friend around Easter, and she didn't acknowledge the surgery either.
I feel like everything was done and neatly wrapped up in a bow in six months and I'm expected to just be happy. But I'm not. I haven't really processed the fact that I had cancer. I haven't processed the fact that I might have cancer again in the future. I'm so terrified that because I've had it once, it's going to start cropping up in other places in my body. And no one wants to talk about that.
Does anyone else feel like their cancer was treated like it was no big deal? Like you just get cut open and they yank it out, and you're expected to be good to go, like a car getting repaired? Or that, because you haven't had chemo and radiation, it's not "real" cancer?
Thank you for listening, if you've read this far. I really needed to get this out. It's been weighing heavily on my mind.
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08-06-2017, 12:06 AM
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Posts: 12,392
Hysterectomy: October 15th, 2009
Surgery Type: TVH
Ovaries: Removed both
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Re: How can cancer be no big deal?
I can so relate to your feelings. When I had my cancer diagnosis, it shook my world. I didn't think I'd ever have cancer and I had no warning. Most people, and for this reason I didn't tell many, reacted by telling me it was "only" a uterine cancer, "not serious like breast cancer", and after all was being treated with "just a hysterectomy ". Didn't they realize I had surgery to remove organs near and dear to me? And as we all do, I feared a higher stage or a recurrence. I still fear other cancers. My sister in law had a completely different cancer and was offered support groups, people wore ribbon pins for her, and similar support, which was a wonderful thing. But where's the support for those of us with GYN cancers? I felt like my cancer wasn't considered "real". I don't even mention it now for the most part. I don't feel lucky to have gotten cancer. So yes, I do think it's a big deal you had cancer and needed surgery. I understand the way it can change your thinking and cause stress and fear. I'm sorry you have not had support. And I too lost a friend over the situation. But as time has gone by, it's been easier, and I've found support here as well as been able to give support. You had real cancer and it takes time to heal from that in all ways. We are here for you as you get through this time.
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08-06-2017, 07:38 AM
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HysterSister
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Posts: 12
Hysterectomy: May 16th, 2017
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: How can cancer be no big deal?
Thank you so much for the reply... I wrote this last night after having had a long talk with my husband about HIS five year plan and future. And the whole time we were talking, he didn't once ask me about MY plans for the future. It really hurt. (And I told him so, but it wasn't the same, him asking after I'd pointed it out.)
I feel a little better this morning, especially after reading your reply... thank you :-)
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08-06-2017, 07:59 AM
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HysterSister
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Posts: 54
Hysterectomy: June 6th, 2017
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Re: How can cancer be no big deal?
It's only breast cancer that gets the cancer party. I had it 5 years ago and support was crazy. You are practically a rockstar. I HATE the pink lobby so much because of this. I now have ovarian cancer and its a whole different ballgame. I suffer alone without the support of the world or most people I know. As for you- a stage 0 cancer like that is awesome in that odds are really really bad you will die from it. My best advice is to move on. You can only control yourself and bad thoughts are exremely unhealthy. I wish I would have used my breast cancer as a wake up call for major lifestyle and personal changes- I can't help but to feel I may not be in the awful position I am in now.
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08-06-2017, 08:16 AM
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Posts: 19,781
Hysterectomy: May 29th, 2013
Surgery Type: TAH
Ovaries: Removed both
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Re: How can cancer be no big deal?
Most people's minds tend to focus on the obvious. Your husband's kidney disease is an ongoing battle, so they remember that. And if someone has chemo for breast or lung cancer and they're walking around bald for several months, people remember that. But cervical and endometrial cancer often require no more than surgical treatment. There's a surgery, a recovery and then the situation *appears to be* over with.
Sure, the person who had the cancer still has to process the fact that they had cancer and might get it again. But other people, even people close to you, can't see inside your mind so they don't see that you're dealing with this.
I'm going to echo what greyown said: you had real cancer. You are a real cancer survivor. You need to - you're *entitled* to - take however much time, energy and focus you require to process this.
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08-06-2017, 12:12 PM
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HysterSister
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Posts: 1,080
Hysterectomy: August 17th, 2006
Surgery Type: DvH
Ovaries: Removed both
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Re: How can cancer be no big deal?
Just dropped in to say I empathize and agree with everything everyone has said. I am happy that others get such great support for whatever issues they face. But not to give the - so needed! - support to those of us facing gyn cancers . . . hurts a whole lot.
I see ads on television about how this cancer and that cancer are licked with this or that drug. When is someone going to do enough research that *women*'s reproductive cancers are treatable and, better yet, eradicated. Immune therapy drugs are the ones that would help me a whole lot, as I don't seem to even have an immune system, and HPV is overtaking me. But every time I ask about what kind of research is being done, there's very little. Women of my age seem to be expendable, and that's that. It's pretty upsetting, actually. So I totally understand where you are coming from. My sisters don't even call or drop me an email when I come back from surgeries now.
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08-06-2017, 01:29 PM
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HysterSister
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Posts: 54
Hysterectomy: June 6th, 2017
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How can cancer be no big deal?
Exactly!! The bulk of the money goes pink and unfortunately way to much to komen. Komen gives the bulk of its money to awareness whereas it really should be going to research. Research on mets, specifically. Nobody dies from breast cancer- it's when it spreads outside your breast that's the problem. And then the rest of the gyn. cancers are ignored. Either because they aren't interesting or there is no $ in it. Agree 100% with immunotherapy too- amazing breakthroughs with other cancers should be pushing all in this direction.
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08-06-2017, 01:50 PM
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HysterSister
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Posts: 47
Hysterectomy: June 27th, 2017
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Re: How can cancer be no big deal?
I think this discrepancy in society's attitude towards different types of cancer is affecting how *I* think of what I went through also. Since mine was not this cinematic cancer experience, I also have a hard time thinking of myself as a cancer survivor. Which maybe a good thing. Maybe it is best for this single experience to not define us. But the fear we experienced was very real and not having that acknowledged is troubling. I did not share the fact that I had cancer (saying this still feels pretentious since I didn't have chemotherapy) with anyone except for my husband. So no one from my friends and family even had a chance to acknowledge. Since I think it is over (despite the positive pelvic wash) why worry them is my logic.
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08-06-2017, 01:51 PM
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Posts: 19,781
Hysterectomy: May 29th, 2013
Surgery Type: TAH
Ovaries: Removed both
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Re: How can cancer be no big deal?
*Everyone's* heard of breast cancer. Most of us have also heard of cervical cancer because we're told that's why we need regular pap smears. I'd heard of ovarian cancer because for awhile I was coordinating a local lesbian support group. Ovarian Cancer Canada did an outreach campaign and since lesbians tend to have higher ovarian cancer risks, I got a packet of pamphlets in the mail.
But when I had some light bleeding almost four years after menopause, I had no clue that I was supposed to report this to my doc right away. I mean, I'd been bleeding heavily every month for decades and had been told that was "normal." How was I to know that the rules change completely after menopause?
Fortunately, I mentioned the bleeding to my sister, who happens to be a nurse practitioner who also trained as nurse midwife. After Sis got done screaming at me, I dutifully reported the bleeding to my doc. Turned out I had endometrial cancer. I'd never heard of endometrial cancer.
Furthermore when I told female co-workers and friends I had endometrial cancer, most of them asked if it had been picked up on a pap smear! I had to keep explaining how endometrial cancer is different from cervical cancer and why any post-menopausal bleeding should be reported immediately to one's doctor. Obviously I wasn't the only one who hadn't gotten this message!
My province sends a letter out every two years to all women ages 50-75 to remind them to have a mammogram. Do you think they could maybe add a sentence telling women to report any post-menopausal bleeding to a doctor immediately? Apparently not, because I asked and never got an answer, nor did the letter get changed.
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08-06-2017, 01:56 PM
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HysterSister
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Posts: 47
Hysterectomy: June 27th, 2017
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Re: How can cancer be no big deal?
I work at a male-dominated silicon valley technology company where females - including myself -usually suffer from impostor syndrome - inability to internalize accomplishments and having a persistent fear of being exposed as a "fraud". How tragic (or funny? ) is that I feel like I didn't even do cancer right.
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