STEAM ROOM FOR ANGER

smwusaf

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.

Amica

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

vampeyes

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.

Amica

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.

vampeyes

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}

Lita57

Yes, I just checked...friends list IS on the dashboard, towards the bottom.

L

Amica

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.

Amica

Thank you dear Lita57!

How are you doing today?

Sending you love and hugs,

Amica

Phoenixwmn

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.

Micmel

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~

Amica

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

vampeyes

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.

Lula73

vampeyes-is this your new dr that retired?!?

Parrynd1

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

vampeyes

Lula - my GP retired, hopefully have a new one by Fall.

princessfluffybritches

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!

KatyK

Had my monthly oncology appointment today. Met with the nurse practitioner today and she is awesome. More time for questions and discussions. After that went to a coffee shop and ran into my old GP which was interesting, we politely ignored each other. When I was initially having symptoms of recurrence (difficulty breathing during intense exercise) she blew it off and told me it was my fitness level. I’ve been super active and fit all my life so I knew this was different but she did not take it seriously or ask any additional questions. Instead she told me a long story about herself! So since she didn’t seem too concerned I ignored this for months and then went to a different doctor who right away took it seriously and then after appropriate testing I was diagnosed with stage IV cancer. It would not have changed the diagnosis but I would have got treatment months sooner. So I did write a letter to my original GP about my diagnosis and suggested she listened to her patients more and talked less about herself (this was a pattern of hers that was getting worse). And that’s why it was a bit awkward running into her at the coffee shop, but I hope the letter made her reflect and listen better to her current patients.

Things seem stable right now. Get my scans next month, always scary. White blood cell count hanging in there. Will get blood tumor marker results in a day or two. Having friends over for dinner. Keep trying to live life. Good day to you all and hugs!

Amica

KatyK - a LOT of general practitioners could use a letter like that. As I've already written on here, both of my breast cancer occurrences were written off and ignored initially by ignorant doctors, who made excuses like "youre tiredness is due to depression.", "your pain is due to osteo-arthritis." I fell for it both times, but now I swear I will no longer let a family practitioner blithely write off symptoms, that yes 90 % of the time may be something innocuous, but may also be symptoms of cancer and mets.

KatyK,glad you're keeping up with your markers and test. Hoping for you you continue to do well.

vampeyes

I need to vent about something not cancer related! I have awful parents. The sperm donor and I do not speak anymore because well he's an a$$hole and his new wife is worse than him. Long story but she is ticked at me for repeating something my 4 year old said about her grandsons "Lucas doesn't like to play with AJ and Michael because all they do is fight." Fist fight! Apparently by telling them this I have insulted her family and should apologize - F that.

My mom, is a Drama seeker and a lier. I can't stand talking to her anymore, I have no empathy for this woman. I feel a lot of anger and hate towards her. I didn't notice any of this till I was pregnant with the twins (10 years ago), my brother tells me she's always been this way. My therapist thinks it's due to her upbringing, that she lacks empathy for people from being shuffled around from house to house to live. Yesterday she tries to tell me that my step dad had paper work from the cancer clinic hidden, didn't fill it out and that's why he didn't get his follow up after his initial diagnosis a few years ago. NOOOOOOOO, it was the clinics fault, it's the same clinic I go to and I get phone calls for appointments not paper work. They should have followed up when they didn't get any calls from the clinic and not it's too late, so it's actually on both of them - the clinic and my mom and step dad. I am sooooo sick and tired of all her lies and drama seeking. I get I could have had worse parents and a worse upbringing but OMG. The only thing I can do is ignore it apparently, she won't change, maybe with therapy, but that will never happen. She will always have some excuse to not go. I think of all the past lies and how I fell for her drama and fed her addiction. Dam Her!

mustlovepoodles

Erg! I am so pissed off. I have bipolar disorder, so i take a cocktail of psych medications which keep me from killing myself or anybody else. I've been taking them for 10 years and i have been very stable. I saw my psychiatrist last week and got prescriptions refilled, expecting delivery last Monday. I took my last full dose this past Tuesday and called Cigna, looking for my meds. They said if i paid $17 for expedited shopping, they could get them to me today. Great! Here's my credit card! Wednesday i cut the last pills in half and took half doses the past three days. Well, now, Cigna says that they JUST TODAY shipped my meds, meaning I won't get them until Monday earliest.

I started going into withdrawal this a.m. I can't reach my psychiatrist. The local pharmacy can't sell me anything. I'm waiting for my PCP to call back and sincerely hoping she will call some in for me. At this point I'm dizzy, nauseous, listless, and headachey. I know from experience that i will be just about immobilized with vomiting and vertigo by tomorrow if I don't get this medicine TODAY. These are not narcotics or benzos. Just an antidepressant, a mood stabilizer, oh, and an ANTI-PSYCHOTIC. Yeah, let's withhold THAT stuff.

I'm just so ticked off. Cigna dropped the ball in a big way here. I always make sure I have a minimum of 7-10 days medication expressly so i DON'T get in this situation. So, now it looks like I'm going to have to go to a walk in clinic to get enough meds to tie me over to next week. $$$

I swear, if i could live without these drugs, i would. But i can't. I tried. Ended up in a psych hospital. Twice. So,this is my life. Why is thivso hard fir them to understand?

vampeyes

Oh mustlovepoodles, that is awful, I hope you have your pills soon. Great big cyber hugs.

Micmel

I can’t understand how people can keep their jobs. THat is serious. I would call and complain everyday until someone gets a write up. That is just NOT acceptable! I hope you’re able to get your medicine. I so hope you get what you need. Much love ~M~

mustlovepoodles

OMG, I've been sweating bullets all afternoon. I FINALLY got word from my PCP that they would call in the medication at 4:55pm. I literally camped out at the pharmacy for 2-1/2 hours until they gave up The Precious for $25. I didn't care if it cost me $200.

I swear i sound like a crack addict. I promise you, I'm not. These meds really get you in their grip. I fear the day that i might not have access to them. They make my life worth living. Suddenly stopping them makes me so sick I could throw myself into traffic.

I'm gonna watch some Game of Thrones, take my meds early, and go to bed by 9pm.

vampeyes

Poodles, I am so glad you got your pills. I am on Trintellix and going off arms me into a deep depression with suicidal thoughts so I understand how you feel. I would be getting a hold of Cigna and speaking with a supervisor. Not cool to screw with people love that, is dangerous!

Lita57

Nobody should be ashamed about having to take Rx meds for bi-polar issues, depression, anxiety, neurosis, psychosis , etc.

My DD has been on antidepressants for a while. They really made a difference. She was suicidal b4 going on them, and we almost lost her :>(.

vampeyes

Absolutely right Lita - no one should be, it's such a common issue, lot's of people are on these types of meds. I just hope poodles is doing ok now.

mustlovepoodles

Much better this morning, after getting my full dose of meds. Thanks for thinking of me.

Micmel

poodles~ I am so glad you got your medicine and are feeling better today. Phew. That is not something to mess around with. I hope some heads roll. Patients are just blown off sometimes. It’s really shitty. Keep feeling better! ~M

MuddlingThrough

I'm angry but not sure where to aim the anger. I think it might be BCO. In the last week or so I've clicked on topic links related to intimacy during cancer treatment. You've seen them in Active Topics probably. Those boards are not racy, just advice and experience from others who've had their bodies attacked by this disease and AI's and other meds.Patients like me, wanting to do what I can to have as normal a life as possible for me and for DH.

At the same time, awful emails started landing in my email. You know the type- their subject lines scream about hot action and pictures of this or that prurient subject. I'm the only person using that email and the only person using this tablet and I have not visited any sites like that. Of course I trash the emails without opening them but I am really angry that these sleazy scammers have gotten my email addy. It had to be from this site. At set up I chose the most secure settings for the account. I don't want to leave BCO but I might.I

I joined here in Feb. I think. I've clicked many links here but never received Ibrance spam, or taxol spam, ha ha. When I joined I actually thought I was dying and I was in really bad shape so the last thing on my mind was intimacy but as soon as I clicked on a relationship topic the junk started showing up and I hate, hate, hate it.

Sara536

Hi MuddlingThrough,

I’m sorry you are experiencing this spam attack but I can’t see how this could possibly have anything to do with BCO. Maybe you clicked on some random thing that came into your regular email just to see what it was, or maybe you clicked on a link to an outside website that someone here posted. Why don’t you contact the mods directly. I’m sure they can explain the ways in which they protect our information and give you advice on how to protect yourself when following links. Good luck, I think it would freak me out too.