STEAM ROOM FOR ANGER
Comments
-
Dearest ParryND1----I am so moved by what you wrote. I am saddened by what you're dealing with. It sounds like you have people around you that support you & love you deeply. That's everything & I'm grateful you have that. Your spouse sounds amazing. God bless both of you & keep you. I am saddened for those goals you worked so hard for, held dear & aspired to, being snatched from you. I see your heartache for those you love being fearful & worried for you. I understand that well and share your outrage.
I wish I had something inspirational to say to you but I'm not in an inspirational space myself lately so I fear it'd sound false coming from me and I don't want to do that.
Just please know, dear Lady & Fellow Traveler I'll never meet or know except here---I am holding you in my heart.
0 -
I absolutely HATE IT when people call me a "survivor."
WTF !?!?!
I was Dx'd STAGE IV de novo right from the bloody gate! There is NO SURVIVING St IV w/mets to my spine, pelvis, femur, hips, internal organs (liver, kidneys, pancreas) and 20+ brain mets, for which I received Whole Brain Radiation (and now some of the old symptoms are coming back, sadly enough).
As soon as I was Dx'd with the brain mets, I was immediately assigned to a Palliative Care dr., who will see me thru until I'm ready to go on to Hospice.
I wasn't expected to live too much after last Christmas 2017...but, by the grace of GOD, steroids, and lots of CBD tincture to keep the brain inflammation down and the seizures at bay, I'm still here. For how long, I have no idea. I take it one day at a time - that's all I can do. As I've stated before, the Palliative Care doc said "You could go in 6 weeks, 6 months, 16 months...or in less than 6 minutes if one of those brain tumors decides to start bleeding again."
If I make it to my next birthday, and am able to see (I still have the blurry vision and auras), can string two semi-coherent sentences together (that's getting noticeably harder to do as I'm forgetting words and phrases now), and walk with my cane/walker (everything is going numb again, thanks to spinal mets compressing the nerves...I've already had spinal rads THREE TIMES, and there's not much more they can do)...I'll be very fortunate.
Yep...I'm a "survivor" alright.
I REFUSE to participate in any of those BC "Walk for Life" events this year. Last year when I went and walked, some women would walk with me, and when they asked me what my story was, and I told them I was St IV de novo, THEY LITERALLY WALKED AWAY FROM ME DOWN THE TRACK AS FAST AS THEY COULD, LIKE I HAD THE EFFIN' PLAGUE!!
But I'm supposed to be a "survivor" with a positive attitude, right?
My exhaustion gets worse with each subsequent chemo infusion. I wear a back and leg brace, support hose for my chemo-related ankle/leg swelling. And, of course, I never go anywhere now without Depends because of the bowel incontinence the spinal mets have caused.
Isn't it WONDERFUL to be a "survivor"?
L
0 -
OK, my own little mini-rant. Seems small compared to some of your issues but here it is. When I hear you all saying how difficult it is to deal with some of your family members, I think how fortunate I am to not have to deal with that. Then I get a text from my sister in law about how I should be "doing cartwheels" and how happy she is that I can "get back to feeling good again after all I have been through." What??? Some of it may be my own fault. I use the term "clean Pet scan" with everyone when there is nothing new or growing. People here understand that and most (I thought all) of my family understand that and my MS forum people understand that. But this sister in law obviously does not. First, I have felt pretty good for the past few years since stopping chemo. She knows that. I tell her that. I wonder if DH (it's his sister) is telling her different. He plays the sympathy card all the time with her and he also doesn't want her to visit and uses me as an excuse. Oh, so off topic, that. Cartwheels? I think she thinks I'm CURED. Her ex husband (father of her children) had cancer. Did she not learn anything about the disease back then? Does she not know what stage IV means? The bigger question is, then, should I explain it to her or just let her wallow in her obliviousness. I'm also pretty sure that she included a few sentences about my health so she could spend the rest of the very long text message on hers. She fell off her horse a few months ago (she's 60) and broke her shoulder. THAT will heal. My lung mets will not.
So, dancingelizabeth, I get the DH jerk thing. I have one of my own. We were separated when I was diagnosed. I moved back with him. I am very jealous of your "own room." Treasure it.
0 -
Jaycee - I have a feeling that you could tell her till the cows come home and it wouldn't sink in. Some people are just naturally dense. Congrats on a clean PET scan though, this means NEAD and current tumors are staying the same?
Parry - I got a feeling you are the type of personality that is going to show that cancer the door! You sound like a fighter, with a very supportive support group around you. {HUGS}
Lita - I can't believe people would walk away from you, what the heck? My guess is they didn't know how to respond to what you had just told them. {HUGS}
Phoenix - just {HUGS} Big ones.
0 -
vamp, thank you. Yes, I am NEAD. Maybe I should be doing cartwheels but I'm pretty sure that is a bad idea. Vulnerable bones and all.
Lita, I forgot to mention that walking away thing. Sick. I do notice, though, that even on BCO, a thread will get very quiet when a stage IV person shows up. It's very rare but I have been ignored on a busy thread that was populated with lower stage people. I guess if they ignore us, they will not have to consider the possibility of being one of us. And I HATE the survivor thing, too.
0 -
Lita, I don't know why they would walk away from you, unless it's too much in their face that it could be them one day. lol, I am not stage 4, but I told my doctor I didn't want to hear any of that survivor crap, I am not a survivor unless I die of something else in my 90's. I keep thinking I read that somewhere and thought Yes! They always say survivor until you die. Makes no sense.
0 -
Certainly one of the hardest things about this stinking stage IV diagnosis is the emotional trauma caused by some people that just have no or little empathy! I have enough to deal with emotionally that I really don’t need people in my life that can not offer compassion, love, and kindness. Fortunately I have a good support group but there have been a few people in my life that have chosen to not be supportive and the hardest one being my sister. I have tried talking with her about some of her hurtful behavior but now she is mad at me - imagine that being mad at your sister with a stage IV cancer diagnosis! But when people don’t have empathy that’s what they do- get mad at you like it’s your fault. She has told me she would do anything for me and to just tell her what I need but when I do she seems irritated. She has now canceled three dinners on me, unbelievable. Now I don’t even hear from her but I think it’s for the best. I want to spend my time with family and friends that are loving and kind. And I’m pissed that my treatment is changing my body. I’ve always been very active and fit but now I’m gaining weight. I’m still pretty active and do something every day but still gained weight. I know I need to follow treatment to stay alive and weight gain should not be that important but right now I’m pissed about it! I saw pictures of me at a lake from last year to this year and I look so different. Sometimes I don’t even recognize this body any more. Ugh! Thanks for listening. I’ll go for a mountain bike ride tomorrow morning and feel better.0
-
Katy - Big HUGS for you! It's amazing how some people can be, I am just sorry that it's your own sister. I have a defective mom and an arsehole for a real dad, so I understand how you must feel. Thankfully you have other wonderful supportive people around you.
Jaycee, I don't have bone cancer that I know of and I wouldn't even do cartwheels. lmao at the thought of me trying to do them.
I have to say that my pet peeve is - "Do you think this is your bodies way of telling you that you needed to slow down?" UGH. I don't want to slow down, I quite enjoy being busy and doing lots. I am quite angry that I have had to slow down so much because of this disease. I am also worried if all my back pain is really mets and not the arthritis they told me it was.
Big Hugs for everybody! Katy I want to join you on the bike ride! I miss riding my bike!
0 -
Thanks for the hugs, Vampeyes. Yep, just trying to focus my energy on the supportive people in my life and really not interested in wasting my time with others. This crappy disease clears up real quickly how you want to spend your time and who you want to spend time with. I’ll put in an extra mile on my bike tomorrow for you
0 -
Hi everyone,
Thanks for all the support. Sometimes you just need to let off steam.
Sending positive thoughts to everyone having a hard time. Just found out today my fiancé’s grandma has breast cancer recurrence. We didn’t know about the first time. No genes saying it should run in the family or make either of usmore pone to this disease. Who would have thought we’d have this in common! Life is crazy sometimes...
0 -
Having recently been diagnosed with a metastatic recurrence, it pisses me off how readily my family doctor wrote off hip and rib pain I've been having for about a year as osteo-arthritis. I feel like saying to her now, "So you can diagnosis arthritis just by looking at someone from the outside?" Doctors shouldn't be so ignorant with any breast cancer survivor. She also wrote off the lump under my collarbone as a lipoma but at least humored me by ordering an ultrasound. Of course it turned out to be positive for metastasized breast cancer.
0 -
Dear Lita57
My heart breaks for you. I am so sorry for your pain and hardship. I send you hugs and love and compassion.
take care,
Amica
0 -
Oh Parry so sorry your finance's grandmother has to go through this again!
Amica - they haven't done a bone scan on you yet? Frickin Ontario - so cheap with the tests! I had the tests, but my back hurts so much lately I don't know if I agree it's arthritis, I am only 42! Too bad it's hard to get a doctor or I'd be switching if I were you! {HUGS}
0 -
We are sending gentle hugs to each of you
. We're here for you!
0 -
Jaycee & Lita, about the "walking away" or "going quiet" things. My first reaction - That is so awful!, My second reaction - I hope I haven't done that myself. I know that sometimes I see comments from stage IV folks and I think, man, how can I respond to that? I'm not even in the same boat?
I want to be more empathetic. That is a goal of mine and since my diagnosis it has been a focus for me. I'm a work in progress.
I like the word survivor, every day is one more day I get to fight. But I get that that might be annoying to others as well.
0 -
Vampeyes
re: "Amica - they haven't done a bone scan on you yet? Frickin Ontario - so cheap with the tests! "
I can't even get a freaking appointment at the Juravinski Center in Hamilton until mid-August according to a clerk I spoke with today. I hope she was in error. I called to check they had all the necessary paperwork they needed for the referral and it sounded like a mess. They said, "We got the letter you wrote." I never wrote any letter!! It's just a mess, and I am furious and disgusted with the Ontario healthcare system. For Pete's sake, instigate $10 co-pay per office visit and pump some more money into this underfunded system!!!
Yes I believe I am due a bone scan, a Pet scan and whatever other tests should be run to determine where the cancer has spread. And this should be done ASAP given I have a tumor pressing on my collarbone that makes me feel like I am being strangled, and stabbing pains in my side ribs and collarbone. Did my doctor even report that to them? I believe not, she's such an idiot.
Having read another woman's experience on this board with multiple positive supraclavicular lymph nodes, the first thing they did was a PET scan and multiple areas lit up. Why isn't that being done for me? I don't believe I have only one positive lymph node. It is a 30 X 40 mm mass, and it is highly likely other lymph nodes are affected.
Anyway I am royallly pissed, and SO disgusted with the Ontario so-called healthcare system.
Amica
0 -
Fight and fight hard Amica! They took their sweet time with my step dad, by the time he got chemo it was too late and now he's gone. Go to the emerge if you have to, it was the ER doctor who got me a bone scan. Ask to go to Toronto or London if you need to. I am so angry and frustrated with Ontario's health care as well.
0 -
Vampeyes
re: "Fight and fight hard Amica! They took their sweet time with my step dad, by the time he got chemo it was too late and now he's gone. Go to the emerge if you have to, it was the ER doctor who got me a bone scan. Ask to go to Toronto or London if you need to. I am so angry and frustrated with Ontario's health care as well."
That's good advice Vampeyes. I added you as a Friend, but I don't know how to find my Friend's list, lol? Maybe someone on here knows.
That is an EXCELLENT idea re the ER doctor. Or on the other hand, if I do indeed have to wait a month to get in to the Cancer Center I see no reason why my family doctor cannot order some PET or MRI scans in the meanwhile. The thing is she is so absolutely clueless about how to proceed. I think it is criminal that Ontario does not let breast cancer survivors continue annual checkups with oncologists. An oncologist or even an oncology nurse would have probably caught this swelling on my breast as something to be suspicious of, before it grew so big. I just thought it was pectoral muscle that stuck out a bit more on my affected side than my normal side; it didn't feel at all like a "lump."
Another option I have is to call my original oncologist in the U.S. who I last saw in 2011, and see if he can light a fire under someone here.
My father's 70-something girlfriend went to the local hospital with back and stomach pain and was determined to have pancreatic cancer. SHE NEVER EVEN GOT TO SEE AN ONCOLOGIST during the four weeks she was there because they were so under-staffed and over-booked. She died before she even got to see one. In Canada,, I understand you can't really sue doctors or the damages are capped at extremely low numbers. But they should have been sued.
Tomorrow I will phone the Juravinski Referral office and demand politely that they just tell me what records they have, It should take all of 2 minutes to run through the list. There are about 8 or 9 records, that's all. It would take less time for them to run through the list with me than to argue with me and give me the runaround. And if she refuses I'll ask to speak to her manager, or the patient ombudsman, or I will just raise holy hell.
I am frustrated and in despair, and my response to that is just lie in bed and listen to podcasts to get my mind off of all this torment. I know that is not a very good response, but that's all I have.
0 -
In regards to seuing or making complaints against doctors it's not worth it. You can't win and it will only cause more harm for you. I am sorry about for dad's girlfriend, if anything we can learn from these and fight for ourselves. For me I won't see my new MO again unless I have a recurrence. I do see my RO in November and not sure where it will go from the other than yearly mammos.
I do think it's a good idea to ask your GP or other primary caregiver for an MRI or PET scan. You need to know if it has spread anywhere else. I have a CT in November to follow up on a spot on my lung, thanks to that ER doctor....I still wonder if I actually have bone mets and they are passing it off as arthritis due to the type of cancer I had.
I think friends list is in your dashboard.
{HUGS}
0 -
Yes, I just checked...friends list IS on the dashboard, towards the bottom.
L
0 -
thanks Vampeyes
Also a good suggestion re Toronto or London. A doctor who is a nephew of my ex also said Ottawa has a good cancer hospital. Of course referrals elsewhere may slow the process down even more. I am going to take this mid-August thing with a grain of salt, I may have gotten the wrong clerk, who was just giving me the average next appointment, not an appointment for more urgent cases. Sometimes getting an unknowledgeable clerk is the worst. They are going to have to treat this as urgent if the tumor cuts off my breathing, or blood supply to my brain, and I start passing out.
I'm repeating myself, but I just feel that the system should be fighting for the patient; it does not seem like it here in Ontario.
0 -
Thank you dear Lita57!
How are you doing today?
Sending you love and hugs,
Amica
0 -
All of you---you cannot guess how bone-deep grateful I am that I've found you. I feel so isolated & alone with all this BC bulls*t. Seeing your replies, your support both of me and each other, lifts my heart for a few minutes and I love you for that. I think many of us struggle with the people in our orbit, not because there's any malice in what they say to us, but more perhaps because they have zero frame reference for what we endure & flounder from lack of information. Of course, there's always the occasional sh*thead we all encounter.
Those of you who are fighting for your lives, who have a far more immediate cancer battle...I hold you in my heart as heroes. I read what you say & feel a bit ashamed for complaining about my situation, and there you are struggling with mets/radiation/chemo etc, worrying about your loved ones & palliative care care...my heart hurts for you. And my heart fills up with pride and reverent awe at your ferocity. I honestly don't think I could do what you're doing. I think this whole shebang has dried up whatever moxie I mighta had. You can't say that to people who love you , who're worried about you, though...it just won't play well so I keep it to myself, churning inside.
All my life since I was 19, raising six kids alone, working 60-80 hr wks to support them by myself for 31 years---people just keep telling me "Oh, you're SO strong, you'll be just fine!" Guess what----this treatment regimen and all it brings with it, has dragged me way below the water line. I DON'T feel "strong" any more. If I'm honest, in my almost 68 yrs I've never felt so fragile, so......paper-thin. I have zero assurances that I'll "be just fine". NO cancer Dr/Oncologist/surgeon etc ever says such things to a BC patient , or at least I've never heard of that if they have. Ah, well.
I'll likely never meet any of you, but I want you to know-----Parrynd1, Amica, Lita57, Vampeyes, KatyK, Jaycee49; all of you----when I read what you say.... I don't feel so alone for a little while. The silent but terrible impotent anger cools slightly. That's a blessing. All of you are a blessing, each in your own particular way. You give me something I can aspire to during this trial ---( REALLY over people calling it a "journey"..... a journey is a trip to Paris or a weekend with friends, not having effing breast cancer.) Don't wanna gush, just want you to know I'm grateful to you for helping me to feel I'm not a freak or psycho weenie who's losing my mind.
0 -
i very well might be losing my mind, and honestly I wish I would. Then the pain. Of looking into the sweetest blue eyes on my sweet DH of going on 16 years who is the air I breathe. When I get ritilan headaches, they aren't pretty. I am already constantly worried about every single ache and pain. My DH is my hero and the best man and person I have ever met. His honesty astounds me. His never faltering sense of devotion and his beautiful kisses on my forehead. To soothe my soul. I had an extreme meltdown today. They occur quite often I won't lie.
I searched 33years for this beautiful creature and I am damn well not handing him over to anyone else. (I'll haunt her as* everyday) he took one look at me and said. Head hurt? I immediately broke down in his arms. But somehow they feel like a life line. They feel like my arms my home. My heart recognizes his heart. I ugly cried, which made the headache worse. He always talks me down and reminds me of the good points I have going for me. He always says he is almost 53. He is set in his ways. He said I know I am hard to live with, because I am a hard person. And yes he is. He said I have my one love and that’s you. I am not going through anything like that again. Everyone who knows him. Is very intimidated by him. I wasn't in ways. But was in others. But I fell in love immediately like I have never known. I belong to him. I live for my family.
My DD moved out July 1,2018. She was married and moved. My DH immediately painted the room and got it ready for me. My bed is in the living room now, with all of my surgeries and spine mets I need my hospital bed. Plus he snores like a freight train. The room is so beautiful I picked the paint out and it was done within. Hours, just waiting for the second coats to dry now. By this weekend I'll be in the room. He's bringing me a television this weekend for it. That way my son can have a place to invite his friends over to watch tv. Since I have been sick He never feels like he has a place other than his room. I didn't like that. I could use the privacy anyway.
I am distraught over even the thought of one day without hearing DH’s voice or speaking with my kids. How does one come to terms with really understanding, that a lot sooner than you could ever ever imagine having to say goodbye to your beautiful family that he and I created together?? . A lot of blended families didn't work. And don't work. They are so difficult, especially with x husbands and wives in the mix. But we made it. We had just everything moving towards where we wanted to be headed. To finally have the kids graduate and go off to college. Rent my home here and move down where his work is into a new home we choose together, and sell his as well. Combine two homes.
Then I felt this dread hanging over me. I couldn't shake it. I didn't know with who. Or what? I just knew it wasn't good. Then I found the lump. Was told it was cyst and I was under 45 at the time. Too young for a mammo. Next year. Well that year is going to cost me many years I'll never have now. It wasn't a cyst. No siree do not pass go, do not collect two hundred dollars. You're off to see a breast surgeon and oncologist who will tell you how it's spread and you're considered stage four and I have about three years to live. Excuse me what??? Still to this day it’s all I can come up with. Still in such shock. It’s been 2.5 years. Already. So anyone, man or woman, any cancer, that dread is the Worst and I so so very much feel for you., and am sad for us all. We just need the magic cure to occur. ~M~
0 -
Micmel and Pheonixwmn
Your posts brought tears to my eyes. You do not extoll yourselves but what comes to mind when I read your posts - you are both full of courage, love and fortitude. You both deserve all the love and compassion in the world.
Micmel, what you have endured I can't even imagine, and your description of your creating a loving blended family and making it work, and your husband and his solicitude towards you and your aching head (and I know well that thing about a headache only getting worse if one cries), and painting and readying a pleasant room for you was heart-rendering, and very moving. I know well that experience of being written off because one is too "young" to have breast cancer, it happened to me in my 30s, I felt my lump for over a year before my doctor finally relented and let me have a mammogram just to humor me. And like you I wonder who knows how much that over a year delay has cost me. Even my recent recurrence was blithely discounted by my GP who was totally ignorant of the fact that recurrence can happen decades after the initial breast cancer occurs. I am struggling with facing my mortality too, and it is terrifying, and my heart goes out to you.
Pheonixwmn, raising 6 kids alone for 31 years is such a huge accomplishment, it is not just strong, it is extremely admirable, and your children are so fortunate to have you as their mother. I agree this is not a "'journey" but more like being trapped on a runaway train speeding and careening on thin tracks. And I can relate to that feeling of feeling paper thin and at one's wit's ends at the onslaught and indignities of this disease. I feel like I have nothing left to fight this disease, which is now at a more advanced stage, a second time. You are not alone, I stand alongside you, and many other women here also, we'll prop each other up to face and endure this struggle. We will support each other. I have already found so much support on these boards.
I wish you both truckloads of love and support, you are both remarkable women, and I hope you realize that across cyberspace you have myself and an army of other women rooting for you and supporting you in love and compassion.
with love,
Amica
0 -
Amica has said it perfectly and I second that. I don't have the words like she does and my heart goes out to you all. I am angry for you and at your idiot doctor Micmel. I don't know what your support system is Susi, but we are here for you always. If you can add your particulars to your profile so we can where you are at with BC and treatments.
I agree Amica with Ontario, I was lucky that my doctor didn't brush me off as too young for BC. Plus when I went to him with breathing issues he right away got my heart checked out - turns out it was Aspartame. To think of all that stress and anxiety over not being able to breath and the chest pains all due to aspartame. lol at it now, definitely not at the time! Unfortunately my doctor has retired (July 1st), I seen the doctor who is helping out till they can get us a doctor yesterday and he can't think of any reason for my current problems, but sending me for blood work and an ultrasound on my belly. I think the fatigue is Tamoxifen/Hormones and likely that's also what is causing the nausea.
Anyway ladies, I always have an ear for you, and a cyber HUG to give.
0 -
vampeyes-is this your new dr that retired?!?
0 -
I k ow this room is for ranting and being angry, but I’ve found a lot of hopeful and supportive people/posts here. It’s also nice to feel the kinship of frustration in dealing with this. Everyone is always so nice and polite, but no one is ever angry alongside me so i felt alone in my frustration before I found this thread. Not to say I’m happy about what anyone’s is going through.
Micmel
sometimes when the thought of having to say goodbye hits I also can’t find a way to accept it. I can accept dying and pain, but leaving my partner and family I just can’t seem to accept or find peace with other than I’m grateful We know it’s coming and have a chance to say what others never get to because of an accident or something. I know it’s not much, but hopefully it’s a string of comfort and I know I’m clinging to all the strings I can find at this point, lol.
Hugs to everyone...hang in there
0 -
Lula - my GP retired, hopefully have a new one by Fall.
0 -
Lula, I read about that Orgone box in college. He probably got thrown in jail by some big pharmaceutical companies who were terrified to lose their profits. They probably bought the patent and buried it. I have to laugh at myself because I tried the premise and didn't change my comforter for 2 years thinking I was getting my "good stuff" built up in the blanket and returned to me!
0
