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  • THERE IS ONLY ONE KIND OF DOCTOR FOR EACH KIND OF THING AT AT TIME IN THIS WORLD apparently!*



    * if you live in a relatively small rural-ish town in Appalachia and refuse to drive to the nearest bigger-ish town because of stubbornness reasons.

    This whole experience has been very eye opening! I guess I thought cancer was more like it is on tv, where after you get a diagnosis you are introduced to a whole TEAM of nice people who will be taking care of you and then maybe somebody makes sure you go to a therapist or a lovely support group or something? And anytime you have a question somebody with actual knowledge and experience is always available to answer kindly and lay out your treatment options clearly and tell you what you can expect next? but LOL NOOOOPE THIS COUNTRY SUCKS ASS. My mom gets tossed a terminal diagnosis by her GP (who has no oncology experience at all from what I can tell) and then doesn't get to speak to anybody else in the field about it for weeks and nobody has even once said "hey here's a pamphlet that will explain your options" or "hey here's a lovely group of kind people you can talk to about all of your emotions", I mean she was really just thrown into the deep end of TEH CANCER scariness with no support at all. She's got me, who is hundreds of miles away, my brother who is searching for a voodoo cure, my other brother who refuses to talk about it at all, and her newly divorced ex-husband who is now in the depths of a depression, and I can't see that we are much help, tbh.

    It seems like there should be a better system for this kind of thing? I'll bet they handle it better in like, Sweden or the Netherlands maybe. I'll bet in Finland they've got it all figured out so people don't go crazy just sitting around alone waiting to die at any second with basically no information at all about what is going on in their own beekdamned bodies or how to maybe? make it stop.

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    • It's all very confusing to me. Here a GP would refuse to make a diagnosis for this kind of thing. They would just send you to a hospital. A group of people knowing what to do and helping you throughout sounds like utopia.

      Btw, mr. Dada has had his fifth chemo (of six) and after that they pretty much tell us he's done. I mean he has to check regularly for five years but they don't expect it'll appear again. The first chemos were uneventful but the last two ones resulted in a severe cystitis so he is in pain, especially when he pees. So they delayed the last one for a few days. Cross fingers we are done by Tuesday.
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      • Good to hear, dada.

        I feel like everything you said tracks, o. They don't tell you ANYTHING. And when you ask, they smile and say it's fine?

        I went for my second oncology follow-up two days ago and a weird thing happened. The lady doc (junior to my oncologist who uses the term "hubby" and plays love songs in his waiting room) gave me my pelvic exam. She's got a hand up in there and is pressing down on the left side and her face looks ALARMED and I'm like: ?! She pulls back and whips her gloves off and says she can feel my ovary. And I'm like: ooookay? Then she says she's sure it's nothing (!) but she's gonna get the oncology/gynecologist and basically bolts out of the rom. And I'm like: WTF?

        So he comes in, asks if he can get up in it and I say yes, and he does the same thing. She continues to look Deeply Concerned. His eyebrows shoot up, he looks at her and kinda whispers, "I felt it." And she nods. ANd I'm like: WHAT IN THE ACTUAL FUCK is going on?

        He asks me if I have any pain, any issues, etc. And I'm like: WHY IS SHE SHITTING HER PANTS? And he says it's "unusual" to be able to feel the left ovary but that, since my uterus is gone, things have just shifted so it's no big deal. And also... they can feel a cyst on my ovary but it is ALSO no big deal so long as I'm not in pain.

        I peppered them with questions, he demurred and just said to let them know if I find myself in persistent pain! And he'll see me in 3 months. And I said: It's supposed to be 6 months so long as my pelvic is clean. And his eyebrows shoot up and says: Oh, ok.

        LIKE WHAT IS HAPPENING.

        They wouldn't explain why this was so weird or alarming. He acted like it was nothing to worry about.

        I left feeling super confused and baffled. Like every doctor visit.

        Itís just really honestly so tiring and emotionally draining to have to get upset over reality constantly.

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        • ISADORA WHAAAAAT.


          Why can't they just TELL people WTF is going on??? Do they not understand that we will all imagine much worse things than if they just SAY THE THING ALOUD?








          I mean he has to check regularly for five years but they don't expect it'll appear again.


          That is such great news, dada! (but sucks about the side effects, obvs.)

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          • Is, that is not cool. I wonder if they will put enough detail in your medical records to at least be able to see what they mean. If it were actually bad, they would have made you have more tests, but you would not be out of line to go for a second opinion.

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            • My results will post to their site in a few days and I'm gonna review that paperwork closely!
              Itís just really honestly so tiring and emotionally draining to have to get upset over reality constantly.

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              • Oh, and after some googling, I think they were worried I'd developed ovarian cancer. It seems that if you've got cysts on your ovaries after menopause, it's a higher risk for ovarian cancer. So, that's a fun thing to worry about. But, if you've got cysts after hysterectomy, the odds of it being cancer is lower? IDK. It's very confusing and I'm not excited about my body's aging issues.
                Itís just really honestly so tiring and emotionally draining to have to get upset over reality constantly.

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                • Can they not tell patients what theyíre thinking if itís not an official diagnosis!? Ugh. That is so ridic.

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                  • Hey all,
                    Yesterday I had my 4th chemo session - all done the AC portion, in two weeks I start the Taxol sessions.
                    So far I've been very lucky, not a lot of icky side effects (no mouth sores) but have had sore muscles, fingernail discolouration, my hands are darker, napping a lot, and losing most of my hair (I sort of look like a baby duck). I've had 1 bout of nausea - mostly foamy water and a little bit of bile. I think it was from only drinking 5 glasses of water the previous day - usually I drink 8 to 9, plus tea or a small ginger ale.

                    Is - OMG - that sounds so scary! I hope everything turns out ok.

                    Dada - I hope your husband is doing well.

                    Ophy - does your mom live in a rural area? I know that the further you are from a largish town or small city effects health care - like seriously - the small hospitals really don't have enough specialists. My mom had that problem when she first developed diabetes.

                    I live in a large city in Canada so this place is crawling with specialists. In Ontario women over 50 are given a free yearly mammogram as the chances of breast cancer increase after that age. In early January I asked my doctor about it as I'd missed the scheduled one in December and I could feel what I thought was a calcium deposit. A week later I had the mammogram - and the tech was asking me a bunch of questions about why I thought it was a calcium deposit. I'd had those before so I wasn't worried. While I was getting dressed she said she had to step out so could I wait. When she came back in she said there was an opening for a ultrasound. Still wasn't worried. That tech seemed kind of gruff, like I ruined her smoke break or something. I was fine until she started pressing the wand around my armpit. She sort of went "Hmmm." Thing was I had never even checked my armpit since I only thought it was a calcium deposit. That's when I felt a bit of panic.
                    A week later I was back at the family doc to go over the results. . . . and to schedule a biopsy. The results were to be in a week later but then the family doc was on vacation and wouldn't be back for 2 weeks. I asked to see another doctor and got the results. He admitted he didn't know a lot about cancer but advised me to just take care of myself and try keep a positive attitude. I learned more from Google and a bunch of different cancer websites and blogs. I had to wait for my regular doctor to schedule stuff with the cancer clinic at the hospital.
                    The first of March I met with my surgeon. A week later the oncologist and her nurses. Then a social worker, then a dietician. Chemo started in mid-March.
                    I'm very lucky - the Ontario Health Insurance Plan (OHIP) covers all my doctors and any tests like MRI, CAT, etc. My drugs are covered by a federal health plan. Even the chemo beanies and scarves are provided by volunteers. So far I've paid for parking and some OTC stuff like Polysporin (when I got my chemo port), and an ear thermometer, and hospital parking (which I get a flat $3 rate for because of the cancer).

                    God - that sounds like a lot of bragging, doesn't it? People comment on how calm I am about having cancer. I always say - I'm glad I'm in Canada where I'm taken care of instead of the States where I'd have to pay for everything. Although, I am sure that people in Scandinavian and European countries probably have a better health care system. Socialized medicine is the way to go.

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                    • (I sort of look like a baby duck)


                      Okay, the side effects you are dealing with are all terrible except for that one! That one just sounds adorable.


                      Have you found anything that helps with the chemo side effects? My mom is still trying to decide if she's interested in treatment and I was wondering what I could do to help her prepare if she does go through with it.

                      I'm glad I'm in Canada where I'm taken care of instead of the States where I'd have to pay for everything. Although, I am sure that people in Scandinavian and European countries probably have a better health care system. Socialized medicine is the way to go.

                      AGREED. And my mom actually benefits from socialized medicine, because she's old enough to be on Medicare. So she doesn't have to pay for anything so far, I think.


                      Ophy - does your mom live in a rural area?

                      Not exactly, but it's not at all a major metropolitan area either. I think her experience is a lesson to me that I want to make sure to move somewhere with truly great facilities and specialists before I get old, though.

                      She FINALLY had her biopsy last week and they said it was INCONCLUSIVE and they are going to make her do a second biopsy next week. The only thing they did determine was that her doc screwed up when she told my mom that she would die in a couple of months . . . the doc jumped to conclusions from the CT scan/ PET scan reports and assumed that her tumors (she has one huge mass and then several smaller tumors . . . like, 9 or 10 of them, I think?) were one kind when they actually look to be lymphoma, which is apparently different? I do not understand all of this, but I am trying. Now that they think it's lymphoma, they have to figure out from the next biopsy if it's Hodgkins or Non-Hodgkins or something else. It's presumably Stage IV, but regardless, sounds like she may have given all her stuff away and canceled her credit cards and arranged her funeral and said good bye to all of us wee bit prematurely because she's unlikely to kick off from lymphoma quite so quickly as predicted. This makes treatment more likely than she was originally told, as well. Still totally possible that she dies this year, but the door is cracked open a bit which is a HUGE DIFFERENCE then what we were told back in March.


                      I'm fucking mad about this? I mean, if there was a CHANCE it wasn't the 'kill you in a couple of months' cancer, then I feel like the doc should have led with that instead of immediately asking if my mom wanted her to start setting up hospice and telling her to say arrivederci to all of her loved ones ASAP, I mean really. This doc is waaaay too emotionally involved, too. She broke down in tears when telling my mom that she was going to die and has been a fucking mess throughout all of this. And my mom STILL refuses to change docs because she can't stand the thought of hurting her feelings, and then having to explain all of it to the doc's mom who is one my mom's BFFs. Lesson learned! Don't go to a doctor whose diaper you used to change, I think!



                      (My younger brother used to share an apartment with this doc when they were both in college and he's been TELLING ME SOME STORIES HOO BOY. )



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                      • Originally posted by ophy View Post

                        Okay, the side effects you are dealing with are all terrible except for that one! That one just sounds adorable.
                        It sounds cuter than it actually is - - I can feel every little breeze - when someone walks by me, or if I forget to wear a hat outside.

                        Originally posted by ophy View Post
                        Have you found anything that helps with the chemo side effects? My mom is still trying to decide if she's interested in treatment and I was wondering what I could do to help her prepare if she does go through with it.
                        everyone reacts differently. And she has a different cancer so she will have a different chemo regimen.
                        I havenít had any bad chemo side effects so far - not sure why. I drink plenty of water and stay away from spicy or really greasy foods. Had Taco Bell yesterday - usually I have the hottest sauce but went with mild and found it too spicy for me. What a wimp!
                        my skin is quite dry too but I just slather my face and hands with Aveeno (given in a goodie bag the first chemo session - along with teas, socks, and a bunch of other stuff).
                        Iíve had bouts of insomnia for years and years. When it got too bad my doctor would prescribe sleep aids. I donít mind
                        them but never felt comfortable taking them. Now with weed being legal in Canada iíve Started using that. Not smoking though - mainly because I donít want to mess with my asthma- so I use edibles. My oncologist hasnít prescribed anything yet so I buy at a ďdispensaryĒ near my brotherís.
                        And tell her to sleep when she feels like it. In all honesty I Ďm napping more than my 1 year old grand-niece. I think it really helps a great deal though.

                        Originally posted by ophy View Post
                        She FINALLY had her biopsy last week and they said it was INCONCLUSIVE and they are going to make her do a second biopsy next week. The only thing they did determine was that her doc screwed up when she told my mom that she would die in a couple of months
                        OMG - that is so f*cked. On so many levels.
                        Good that she isnít as sick as originally thought. But, man, having to straighten the mess with credit cards, etc, out when sheís not 100% is awful.

                        There is a hospice associated with the cancer centre I go to. They have all sorts of free programs for cancer patients and their families. Stuff like Spanish, guitar, scrapbooking, and knitting. They also have support groups. I want my sister to go to the siblings of patients group because she gets stressed about my cancer more than she likes to admit. So far she is resisting and I donít want to push her too much but I really think she would benefit from talking about it and hearing how others cope.

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                        • I am speechless. I knew it was strange that the doc told your mom so specific things without having a fucking autopsy. (Did she have an ultrasound?) Hodgkin's lymphoma is actually curable but not so sure at stage IV. Unbelievable.

                          Mr dada and I are going to Athens on Friday so he can have the last chemo treatment. After that it's just checking regularly. He hasn't been great though. He's now paranoid and convinced he has all the cancers so he will do a colonoscopy and a laparoscopy very soon and we constantly have to discuss if his burping more than usual is actually cancer. (And he's making me paranoid too! How do I know it is not?)

                          Res, you are dealing with this like a champ. I hope the rest of the treatment goes smoothly too.
                          Last edited by dada_teacher; 05-01-2019, 03:02 PM.
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                          • Res, it sounds like you are handling this shit like a boss! Good for you, because i've been a fucking wreck for months and basically a big baby through the whole thing and I didn't even have to have chemo! Also, god bless Canada. Jeez, I can't even imagine money stress on top of everything else.

                            O! I am GAPING at your story! This is INSANITY. I would lose all my shit on this doctor.
                            Itís just really honestly so tiring and emotionally draining to have to get upset over reality constantly.

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                            • O! I am GAPING at your story! This is INSANITY. I would lose all my shit on this doctor.


                              I AM SOMEWHAT DISPLEASED.

                              For reals, she has put us through HELL. I've gained six pounds from the stress of this!

                              And my kids! We made a special trip up there for me and my kids to say goodbye even though my mom wasn't really feeling that bad yet and it was all kind of puzzling because we were told she would be on her death bed and wacked out on morphine at that point but noooope she was just like, 'hey y'all let's all go to Kohls to buy cheap shit and then go to a steak house lol why not' and so then we came back home and have all just been waiting for her to actually get sicker and she hasn't really gotten sicker? and so I had to tell my kids ooops lol no your grandma might not be dying yet we really know nothing because modern science is basically just a JOKE guess we will just have to make another 'okay so this time grandma is REALLY dying trip' up there once the docs get their thumbs out of their asses later this year or next year or who the hell knows really.


                              MY KIDS DO NOT UNDERSTAND WHAT IS GOING ON AND NEITHER DO I. This has been rough on them and I blame myself!

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                              • How could you blame yourself? You've gotten terrible medical advice!
                                Itís just really honestly so tiring and emotionally draining to have to get upset over reality constantly.

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