What’s your cancer experience? Have you been through it or been close to someone who’s been through it? It’s been a little over two years since I went through treatment. Shortly after my diagnosis a doctor told me I had a very good chance of being cured—a word I’d never associated with cancer before. I lost a very close friend to cancer a few years earlier and while I was happy my own odds were good I kept asking myself, why me and not her?
I want this to be a place where anyone can share anything they want, but here are a few topics for discussion. They’re questions that have stayed on my mind and I wonder if others have felt the same way.
• If you’ve been through cancer do you ever feel survivor’s guilt, or something like it?
• Have you ever gotten over the feeling of always looking over your shoulder, always wondering if a cough or a pain is a sign that it’s back?
• Are there things about cancer that surprised you? Are there things you wish you’d known?
• Is there anything you wish you’d done? Anything you wish you’d not done?
• Are there things you wish other people had done or not done?
I don’t know if this exactly fits the topic as it is more a question/comment on treatment of symptoms… but here goes anyways.
Currently a close family member of mine is going through chemotherapy for stage 3 bladder cancer, their most chronic symptom from treatment has been a massive increase in saliva production. While this isn’t a painful symptom, so to speak, it has dramatically effected their ability/willingness to leave the house (they carry a plastic cup with them as a spittoon wherever they go). I don’t know if I’m asking for ideas or just… venting? But yeah, cancer complicates everything, doesn’t it.
Just waiting for my turn.
Back in 2010, two of my paternal aunts got breast cancer. One is still in remission, and the other died a few months ago after a resurgence in her stomach. Oddly enough, I just got a package from her partner of a medallion with her thumb print.
My dad died of lung cancer 3 years ago. My step dad (who was a vietnam vet) had pancreatic cancer and passed away earlier this year. My grandmother died of leukemia 4 years ago.
I’ve been lucky enough not to deal with the daily grind of helping someone through cancer. It exhausted my mom, I think, with my step dad and my step mom with my dad.
It seems like treatments are better, more effective, more targeted, but obviously, heading it off at the pass or as early as possible increases that likelihood of survival.
Anyway. Hugs to everyone who has/had cancer or who has had family with it.
I had a spot of melanoma cut out of my leg a decade or more ago. If I don’t get killed first, I fully expect to eventually die very painfully and horribly, since that’s how my people tend to go. So I’ve always kept an eye out for symptoms.
As cancer experiences go, I probably had the easiest possible ride - I found it myself, and went through four doctors until I found one that would do a biopsy. My insurance paid (eventually) and thus I am alive with nothing but a minor scar.
I was pretty paranoid about my own and others’ minor skin blemishes for the first five or six years afterwards, but that passed; now I am merely vigilant.
Slow painful death is not uncommon in my world, but I don’t think I’ve ever had anything I’d call “survivor’s guilt”. Sometimes I regret allowing some of the treatments that have prolonged the suffering of loved ones, but honestly there’s never been a case where I wouldn’t have been fighting against my own family, so it’s probably best that didn’t happen. It’s hard enough being a caregiver to someone for years without having bad blood between relatives complicating things.
If the massive increase in saliva hadn’t affected your family member’s willingness to leave the house it’s one of those things that would be amusing, but it’s a real shame. Yes, cancer complicates everything. When I lost almost all my hair–including part of my eyebrows and a lot of eyelashes–I discovered I couldn’t eat or drink anything without my nose dripping like a faucet. It made eating around other people really uncomfortable.
@Mindysan33 Yes, treatments are definitely better, more effective, and more targeted. Ideally any cancer should be caught as early as possible but I was late stage 3 when I was diagnosed and yet the treatment wasn’t that bad. Admittedly I had testicular cancer which is extremely treatable. It, thyroid cancer, and a few others are so treatable that one of my doctors called them “good”, saying, “If you’re gonna get cancer they’re the ones to get.” I hope soon the same can be said of lung and pancreatic cancer and leukemia too. Those tend to be so aggressive and the treatments so serious that, no joke, it’s really debatable whether the remedy is worse than the disease.
@Medievalist I hope you can avoid dying painfully and horribly, and in your melanoma experience it sounds like you did exactly what you should have done in going through several doctors until you found one who’d do a biopsy. I’ve known too many people who stuck with a doctor either out of loyalty or ignorance, even when it was detrimental to their health.
I have a friend who was diagnosed with breast Cancer before she turned 30.
She’s been through chemo, radiation, a double mastectomy, and chemically induced menopause.
She’ll be 35 this coming year, and while I’m grateful my friend is still here, I don’t wish that nightmarish shit on anyone ever.
I’ve known other Survivors, but only tangentially; this recent experience was the first time it was ‘up close and personal’ for me; and it was a harrowing experience, just to witness.
I’m going to run this by my family member and see what they think. They have a history of severe depression and their mental state has severely suffered during treatment. Depending on their response, I am willing to seriously consider procuring psilocybin for them. I doubt it would be that hard to find in Portland.
It’s wonderful that you were there to be by your friend’s side. What she went through was terrible and not something anyone should ever have to suffer, but it helps to have friends.
I hope it also helps that she’s now a survivor and that really means something. Breast cancer is terrible and yet I’ve met women who are twenty and thirty year survivors. Cancer will radically alter a person’s life but at least there’s life after it.
During chemo my oncologist added Zoloft to my mix of medications to help me deal with anxiety and depression. I think I would have preferred psilocybin.
I should look into it too. The drug I’m on now has two main side effects which are debilitating enough to make most patients go off it: bone pain and searing depression. I find the depression harder to deal with than the bone pain, FWIW.
I should probably answer the OP: Stage 3 breast cancer, multiple surgeries (it had spread further than they realized), chemo, radiation, ongoing oral medication to keep it at bay. Have gotten through all the crucial markers so far…at this point, I am reasonably assured that even if it does come back in future, I will at least get my youngest the rest of the way through high school.
I threw a party once I was through all the overt treatments, to thank all the friends who helped me in various ways. We went to a local art center and spent the evening with a staff instructor running a private pottery class for us while we all drank wine. Instead of making THINGS, she had us break up into three groups and work sequentially between three tables: each group created the top third of a hero/creature, then moved to the next table to create the middle third (with the other part covered), then moved again to finish the creations before they were unveiled for all to see. The instructor had a whole story line for what we were supposed to embody in each section. It was a really fun and creative exercise.
Also, one thing I found really surprising was how NICE total strangers were when I was bald from chemo, and how uncomfortable friends-but-not-close-ones were.
That’s fantastic that you’re a survivor and that pottery project sounds like a great way to celebrate.
I can’t imagine how hard losing your hair must have been. One thing that surprised me was learning how varied peoples’ experiences with that were. Some didn’t lose their hair at all, some only had partial loss. One man I knew only lost hair from the neck down. I was told my hair might come back gray and curly and I said “Cool–I’ll look like Peter Capaldi!” Didn’t happen, dammit.
One day when I was in the store wearing a head wrap a man asked me, “Chemo?” He then pointed to his hair and said “Don’t worry–it grows back.”
A lot of the kindness of strangers seems to come from people who’ve had experience with cancer.
Five years free of thyroid cancer. We’d noticed a large lump in my throat, but all my hormone tests came back normal. We had it biopsied (that is really not fun) and they found nothing. But it was bothering me; I could feel it when I swallowed and it was grossing me out. So after two cardiologists (I also have a congenital heart defect) approved me for “elective” surgery, I had it removed.
And it was totally cancer. A 10cm tumor. I had to go back in for a second surgery to have all of my thyroid taken out. And the other lobe was totally clean. The tumor was totally discrete and hadn’t spread at all. I was very lucky.
I also had the radiation therapy after, where you swallow a pill they bring you in a lead bottle and you’re radioactive for a week. I lost my sense of taste for almost a month - that was weird.
When discussing treatment, I told my onco that losing my hair wouldn’t be a problem, but I was hoping my eyebrows and eyelashes didn’t go. I have dark hair, and skin that goes between a few different shades and undertones depending on access to sunlight, so for me the contrast between light and dark is normal and thus ‘preferable’. I had a roommate once who was of Scandinavian heritage, a blonde even as an adult, and in the morning there was no face there. She had to draw in eyebrows, put on mascara and liner, etc. before there was any contrast in her face. Some people find that beautiful, of course, and I can see the aesthetics (Tilda Swinton comes to mind) but it wouldn’t feel normal to see it on my own face. And sure enough, I lost all body hair, and it really was the loss of the eyebrows specifically that bothered me.
In my case, they only grew back about 50%, and lighter, and the same with my eyelashes, and I really think that does not work well for my coloring and facial structure at all. I’m no Tilda! But my hair came back basically the same as it ever was.
Body hair also grew back at only about 50%, very fine, and virtually blonde, so that was a nice silver lining to the cloud!
The little lead casket? Isn’t that the cutest thing? It shouldn’t seem cute, considering, but it is. Can’t find an example online to show everyone else.
I haven’t been able to figure out any pattern to the hair thing. One friend grew her hair back curly, after having been straight-haired all her life; another took well over a year to grow back (she wore woad or henna patterns in the summer when it was too hot for caps) and right now my cousin’s gone bald for the second time (bone cancer this time) but the first time 'round it all grew back exactly as it had been before the we cancer. It does seem to always come back, though, eventually.
I am sending you warm fuzzy kitten thoughts. Is this the cute little lead casket?
No, but that is cute!
They didn’t let me keep my casket!
The one thing I don’t have is a family history of breast cancer. Which I think is one I’d have the hardest time dealing with, personally. I’ve got myeloma on both sides, as well as lymphoma. I got diagnosed with thyroid cancer right after my dad was diagnosed with myeloma. I blame my spouse for mine - his whole family has a history of thyroid problems and mine has none, so it HAD to be him!
