STEAM ROOM FOR ANGER
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For Hapa (and everyone) I really have to clarify that my Hub isn't a Bad Person (not, that is my job it seems). But he is definitely guilty of being ignorant, on purpose, of the realities of life. Since making that post I have said to him at least 3 times, if you want to have everyone over, you can. It's okay. We do have the room. So if it's important to you to host your entire family, do it. But I'm out. I'm leaving. You take this ball and run with it honey because I do not enjoy this and I do not want to do it anymore.
It's not so much that I don't have the energy or stamina. I think I could muster that if I needed to. I DO muster that when needed. We all do! BUt at what point do we get to put our foot down and say this is one thing I do NOT need to push my way through? This is one thing I can block from my life so I don't feel resentful and walked on and tired. How many Christmases was Hub fast asleep in bed while I was still in the kitchen washing up? Yup. I remember that shit. I remember not feeling really good about it. I remember feeling ever so slightly like I had been trampled in a stampede. Resentment means that you are not speaking your truth. I have become resentful of social obligations that someone else saddles me with. So I have found my NO. I have found it in the past but even more recently. I realize that some people hate entertaining but do so because they feel it is important - go for it. Others actually enjoy it. Go for it! But I do not enjoy it and don't want to do it so...no.
Thank you everyone for knowing what I'm talking about. I feel like such a miserable cow and my sad, blinking husband who stares at me in wide eyed silence certainly doesn't help. It's like kicking a puppy. But puppy or not, if you passive aggressive guilt me about your family, you can have them, ALL ON YOUR OWN!
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Runor - it seems that we all do know exactly what you are feeling! Since my BMX two years ago, my husband - and my daughters, too - seem to think okay, the cancer is gone so what the heck is her problem? How come she still has days when she stays in bed and other days when she cries most of the day? She should be so thankful that the cancer is gone. Ask how I am doing? Hell no. I should be feeling just fine. That little white pill is keeping the cancer away and the blue one prevents her from screaming and yelling at us.
Don't get me wrong. My DH and my daughters are wonderful but they just don't get it. I think they all figure that since I had surgery and the oncologist tells me I'm "cancer-free" that should be the end of it. So I should get on with my life and remember that there are a lot of others who are far worse off than me. Doesn't matter that I had two very important body parts amputated. Doesn't matter that I have to go for therapy because I have PTSD.
I think it's time to tell your hubby that if he wants to entertain, he can jump right in and do it. Start to finish. If you don't want to do it, don't. We all know it's a lot of work no matter whether it's 3 people or 30. Like they tell the kids - just say no. You are NOT a bad person.
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Thank you Snicker, for bringing that up. I've been thinking a lot about the "you should be grateful" thing. I'm getting that from my MO's nurses a lot lately. Just an attitude. Like you are stage IV. You should be grateful to be alive. I needed an analogy to go back at people with. Thought of it yesterday, well, in the middle of the night last night. What if your husband beat you once a week. Would people say, "he could be beating you every day instead of just once a week. You should be grateful." Maybe some idiots would think that but I'm hoping most people would not. Next time I get that "you should be grateful" attitude, I'm going with that.
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I kept my menu's of different family gatherings we've hosted over the years. This Easter is the 1st in a very, very long time that there will be nothing. I'm not sure how I really feel about that. I won't miss the cleaning and washing dishes that's for sure, but our family dynamic is different now. My parents are deceased, it's hard to get my siblings and their families together it seems and that does piss me off. Last time we were together Easter was discussed and it is fine that we cannot be together. I get it. However my brother just turned 60, and we are trying to come up with a time and place to celebrate that. The last message was Apr-8. I'm not reaching out again. It makes me soooo sad. Just answer the damn group text. My one brother and sister in law did not reply at all......it's rude.
My husbands' family is a total disaster. His mother was recently placed in a skilled nursing facility after her 2nd husband had passed away back in Oct. The year and a half prior trying to help them out and dealing with his siblings totally exhausted me. I finally put up boundries and none of them talk to either of us now. I'm OK with that. We deal with them when we have to.
My new motto is, do only what you want to do and feel good about doing.
I'll be saying a prayer for all of you this weekend. Have a good one.
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I used to have two brothers and two SIL. My mother cooked a weekly Sunday dinner. When she was able to do that, we all got together.
That all changed once I got cancer. My brother and his wife initially were around but they completely disappeared. Then his wife's poor mother got lung cancer and they cared her in their home. We offered ourselves some help but they passed. She died at the house. We understood the absence then. Buy they stayed gone many months after she died. It also turned verbally abusive. He always liked to antagonize people until they blew up. His wife could be nice out of one side of her face and unkind after.
What am I getting too. When my mother died, we co owned the home and it was hard running two houses. He became angry at my older brother and I saying we kept him from our mother. We only asked for short visits as she was tired.
I was verbally abused by his wife not a week after Mom died. Andrew was quite alright. I told him he would no longer hear from me. He just said whatever.
This was 3 months ago and I am glad those people are gone. I have moved, they can't find me and my medical directive have said he is not allowed to see me at the end. I don't think he will care but it protects me.
I now only have one brother. I have a wonderful older brother and his wife and children. When people have asked about my family, I tell them I only have one. I lose out on s couple of nephews but the peace without toxic people.
Sometimes we need to do the cutting off of family members for our benefit and theirs. I feel more at peace without people who take joy in verbal abuse and abusing terminally ill people.
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Jaycee, what a brilliant analogy! Spot on. It really does get trite and tiring when people bitch slap you with 'you need to be grateful'. Here's the thing. Gratitude for whatever I feel gratitude for is an INTERNAL and PERSONAL decision. It is not EVER up to some outside entity to tell you how you should be feeling in your life. Maybe if you've gone to a therapist and are paying them $100 an hour to tell you to be grateful, fine. But once you've been diagnosed with cancer, your world is tilted on its axis and it's a battle to try and get back in the saddle, live a life that looks normal, while having a new mental battle to fight every day. As Snicker'smom pointed out, some days we are on our game and other days we're in bed crying.
Just today my Hub said to me (rather bizarrely) "Do I get pissed off at you that you keep acting like you have cancer when you don't actually have it?" I stared at him in dumbfounded shock because I had no response to that. A) WHAT exactly do I do that makes you think I am 'acting' like I have cancer? Every goddamned task and chore that I have ever done I am doing now! I make fires, split firewood, look after livestock, shovel snow, mow lawns, do all the housework all of the yardwork, stay home while he goes snowmobling ... what the FUCK do you think I do or do not do because I am 'acting' like I have cancer? Asshole.
By what authority do you claim I don't have cancer? There is a good chance that I do not have cancer. There is just as good a chance that I do and we haven't noticed it yet. There is no proof one way or the other of my cancer status. No one is checking blood tests. No scans are being done. When I have a pain or problem they'll go looking, like they did with my lungs. I live waiting for the other shoe to drop - yet I continue on as if everything is just fine. I am grateful for the lovely moments that I can enjoy now and then, the small pleasures that make my spirit smile. But do I blaze ahead with my chest puffed out, look at me, I am cancer free, I shall live to be 100. NO! That is NOT the case and I know it. Act like I still have cancer, go pound sand with that bullshit. I have terror. I have uncertainty . I have an up close and personal reminder that one day I won't be here anymore. And I think I do pretty damn well day to day, thank you very much. People who tell us we have lots to be grateful for are offering it as an either/ or situation. You can either be grateful OR you can be clasped in the grips of cancer, wallowing in self pity and weak -mindedness. To this I say, it's hard to grasp, Confucius, but it can be both. Both grateful and laid low all at the same time, all in the same day, all in the same breath.
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Runor - you sure said what I feel! I know there are people out there who are a lot worse off than me but nobody has the right to minimize what has happened to me. I kind of have to chuckle when you mention your husband saying you act like you have cancer. So how do we act? What do we do thay sets us apart from those who don't have it. And how are we supposed to act?? Yeah, that would have pissed me off big time.
I love you guys. I don't know what I would do without all of you.
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Same here. I consider this a safe space to vent frustration and stress, which will kill me faster. It acts as a buffer as well. Allows us to vent toxic words and emotions here with people who don't judge and not our families. Thus saving our feelings and sometimes theirs in turn.
So I have had many posts about the younger brother I had. I decided that I need to let go of my anger and hatred of him. I was really stressed and upset still about our parting of the ways. I spoke to my social worker and she suggested that I write him a letter, saying everything I wanted to say to him. She said I could decide to either send it or destroy it, BUT either way, write all the feelings and resentment and stress into the letter. I did what she asked me to do, wrote the letter and ultimately destroyed it. It is starting me on the path to healing myself. It won't change the separation (too much happened) but changes my thinking about it. I am no longer allowing my hurt feelings destroy the joys that I do have in my life. I have a new apartment, family members that helped me, new and old friends in my life as well. I should not allow my own feelings to dictate how I choose to live. I only hurt myself by hanging onto the anger and resentment I have.
My coping mechanism, taught to me by a friend, is every time I start to dwell on the situation, I mentally start spelling the word red. I repeat R E D in my head until the thoughts disappear. It is helping alot. My new goal is to no longer harp on the situation in my family by writing the letter and distracting any thoughts about the situation. Given time, I am confident that I will think about things less and less often.
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Mara, years ago I had a counselor suggest the same thing to me. Writing a letter is a good way to release those feelings. I decided to send mine to my parents to ask about abuse from an older brother. It was difficult confronting them and it did cause a blowup for a bit, but I am so glad I did it. The brother flew to where I was and apologized. I am not suggesting this for you, just relating my experience. I have another brother who never calls me or my mother and I don’t know why. We were never that close so I haven’t pursued finding out why. I will not be writing a letter to him. Glad to hear that you are moving past the anger.0
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this is the first time I've ever posted to this topic... I'm so shocked and upset... my husband and I were talking about a close friend of ours who has a very serious case of bladder cancer... I said I'm glad he's getting scanned and that I also am getting scanned every year... he said "yours is different ... it's like skin cancer it's not like it's deep inside your body." I was so shocked I didn't even respond... my husband and I have been married almost 40 years...I know he loves me so it's not that... I think that when I had my surgery and radiation I minimized it all so as not to upset him but now I don't know what to think...I didn't respond and let it go but I still feel very upset...
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I woke up this morning with ba d pain in mybrightbshoukder. Have read back and bit might be from the liver? Brook a half a lortab. Anybody has this?
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April, I hope your husband realizes that skin cancer can become malignant. You may have minimized your treatments but cancer is serious no matter the kind or stage. Like a lot of men he may be a selective listener, only hearing those catch words like “cured” and “early stage” and not thinking it’s serious. But it is. And he’s lucky you came through treatments well antaking care of yourself.
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I tend to break things down to simpler for my DH as he's just so overwhelmed with my having cancer. Then when he goes to appointments with me... like our 1st visit to RO and we discuss treatment you can see his anxiety building. He tells me sometimes less is more meaning he doesn't always 'want' to know. I saw this with his reactions to his mother's illness especially during her last 6 months... he couldn't comprehend it all and stuck his head in the sand. Now 9 months later he regrets that he wasn't more involved....
Gracie I'm sorry your in pain and hope you feel better soon. As per the pain could you have slept on your shoulder in an odd position?? Please don't wait too long before you call your Dr.
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I worked in a cancer hospital in the U.S.- we were open Christmas Day and every other holiday. That is at it should be --its hospital!
Now I am STUCK in Canada. I had an important bone scan on April 18th, and the entire hospital system is "on Easter Holiday" until tomorrow the 23rd. That is an awfully long time to to wait for results, I am so anxious. Even if I get a hold of someone tomorrow it may take days to get cursory verbal results. To get written results take 30 to 60 days which is useless. I HATE THE CANADIAN HEALTHCARE SYSTEM. IT IS A BROKEN SYSTEM. I HAVE NEVER SEEN ENTIRE HOSPITALS CLOSE FOR HOLIDAYS.
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thank you wanderingneedle for your kind words... Nanette your hubby sounds like mine...
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amica odd that a whole hospital would close for Easter holiday. May you get good results. Stinks you have to wait!
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Amica, hospitals don't close. But hospital departments do. Patients still get fed and tended, emergency room still make you wait 5 hours with your severed leg beside you in a garbage bag. But close? Not in the fullest sense of the word, but they don't book appointments for those days most times. Yes, the waiting is torture. My average wait time for anything cancer related, whether it be a test result or news of my next appointment was 3 weeks. Three weeks of hell!
April - wow. Just wow. I have to be honest and say I wonder what kindness you think you're providing when you sugar coat or soft sell or down play or minimize your reality? Unless your husband is truly mentally challenged, stupid or suffering a neurological injury, we HARM OUR PARTNERS when we decide all on our own that they're too stupid to handle the truth. It's a vote of non-confidence. It's a sign of disrespect. It allows us to harbour resentment and let it out later, in ugly ways. It sows the seeds of discord. It comes back to haunt you.
I say you have not let this go. You won't be able to. He brushed you off. He categorized your situation as 'not that bad'. He is either ignorant or in denial, either way, I say tune the man up. What he does with that truth is totally up to him. But then it's not your fault that you didn't lay all the cards on the table. It is, in my mind, extremely dishonest to not be plain and bloody clear with others who refuse to Get It! It might be something as simple as asking "Well, dear, just when will my cacner be, you know, real and deep? When it shows up in my brain or bones or lungs? Will it be deep then? Shall we reserve our concern and alarm for that and ignore the situation now? Please let me know how you want this to play out so that I may go along with your fiction." Ooooh - this makes me mad!
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Geez, April. I'm sorry. Skin Cancer is the NUMBER ONE CANCER, with a higher incidence than breast cancer, and it KILLS people by drilling down into the body and metastasizing. There are so many family members out there who either choose to "selectively forget" or just don't care about the truths of cancer.
My Sis-In-Law once asked, "Aren't you done with chemo yet?" She KNOWS I am STAGE IV, and that means I will NEVER be done with cancer Tx until I actually go on hospice, or die from a heart attack or one of my brain tumors hemorrhages in my sleep.
It's tough when it's your partner, tho.
I know my DH knows I'm very sick, he takes me to my dr apps after all, but I still don't truly know if he really "gets it." I still try to cook (altho I have to sit at the table to prep vegetables and cut other things up), fold the laundry, and wash a dish once in a while. So in some instances he must think everything is just fine and dandy....but it's not. I can't bend over or do yard work, and I can't climb steps anymore either.
My DD just wants to bury her head in the sand. I'm trying to get her to do more of the cooking, reminding her that I won't be here much longer to show her all my mom's Italian recipes and techniques. DD needs to step up to the plate and start doing more things around here besides just a little cooking, clean up her act, and stop turning her bedroom into a hoarder's paradise (or nightmare - she must have gotten the hoarding gene from my DH's mother), but it falls on deaf ears.
And then I get ANGRY.
And I yell and SWEAR vociferously because all the steroids I take for the brain tumors have totally changed my personality.
And I don't apologize anymore. Why should I? It's not going to change anything. Being nice hasn't changed anything. Swearing and being outspoken hasn't changed anything. It doesn't matter anymore.
So I just go on my merry way, and - - my daughter HATES this expression - - que sera. sera.
L
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I mentioned once to my husband that although I appreciated how helpful and supportive he'd been during my Year of Crap, he seemed less emotional about it than I expected. He said, "You weren't in the car the times I've had to pull over and let it all out." Turns out we'd been protecting each other's feelings a bit. And we decided that it was absolutely okay to do that.
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Good reminder to thank those who help and support and it is hard to remember to do that when you feel crummy.
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Reading some of these posts makes me re-think if my "rant" is worthy. No one has to read this, but I need to write it down.
I go back to work May 6 and should be able to get back to a "new" normal life. I have been home since my Surgery the first week in Jan. 2019.
The first time I had cancer I went to a local hospital for treatment. It was 2003. I had a good surgeon, great medical oncologist and horrid radiation oncologist. There was no such thing as a "breast care co-ordinator." I received a list of medical oncologists, and the hospital only had one radiation oncologist. My doctors didn't communicate. I was awake for a surgery I should have been out for, but they covered my head with a sheet and no one looked to see if I was still awake. Eventually, I guess they realized it as I did go to sleep, but not before being traumatized. I was burned very badly by radiation. All in all it was a horrific experience.
I was diagnosed again, in Dec. 2018. This time I vowed to go to a cancer hospital. I live within an hour of a city that actually has 4 very well known and established breast cancer programs. The hospital I went to ONLY deals with cancer. I thought it would be great, but what I learned was that it wasn't perfect either, for the following reasons.
***Note, I was in shock at having cancer again. I thought I was cured! It had been 15 1/2 years! I didn't really accept it until well after my surgery!
1. It's big and there is a revolving door of patients. I quickly felt lost in the numbers.
2. The doctors don't seem to care what I think, they "tell" me what I need to do! I wanted a BMX with no reconstruction. At my first meeting with the BS he said no, they don't remove healthy breasts! He immediately called in the PS who told me what reconstruction was best for me. It was a done deal, that is what they were doing. I left with a bunch of tests scheduled and a list of films/reports I needed to get from former doctors.
3. I found out my surgery was scheduled by accident! I happened to go on to my patient portal to check a time for an appointment, I found out I was scheduled for pre-admittance testing the same day! Never got a phone call or email/text to tell me that. I looked at appointments for Jan and saw my surgery listed! When I saw the BS again, he said something like, "lets see if your surgery has been scheduled yet." I didn't tell him I already knew, I was so shocked that he didn't seem to know!
4. I had a mastectomy with DIEP reconstruction. It was about a 9 hour surgery after which I was placed in a room with a woman who had just been diagnosed with pneumococcal pneumonia! The nurse asked me if I had that vaccine! Ummm, what about my visitors, what if I hadn't had it? No one seemed to care.
5. My follow up visits have lacked purpose. I saw the BS once, told to see him again in 6 months. I have large open wounds on my breast from having prior radiation. My PS has done nothing about it. They don't seem to care. I have gone though hundreds of sterile gauze non-adherent bandages and I will go through hundreds more until they heal......if they ever heal?
6. I have my final follow up with the PS before I go back to work next week. I expect nothing. I wish I could have billed my insurance company for all the care I have been giving myself. The PS will just look at the wounds (if I even see him, last time it was the PA), and he will say the same thing he has said for months, "there are granular cells there, it will take time for the skin cells to fill in." I stayed home from work an additional 4 weeks because I work in a middle school where I can't avoid getting bumped or worse, by students. The students are allowed to carry back packs etc and I change rooms throughout the day so I have to move through the halls too. I don't know when the PS will want be back for another follow up visit, but it can't be before the end of June. I have no sick days left. I have a feeling he will say 6 months too!
7. I am so worried that with the warm humid weather approaching that I will end up with yeast infections in my wounds. I guess I will have to have my primary care doctor deal with that if it happens because my PS doesn't seem to care. About a week or so after surgery and I broke out with hives all over my body. I called the cancer center's nurse triage who spoke with my "team" of doctors and they told me to see an allergist! I saw my PC and he helped me.
8. They set me up with a MO who of course prescribed Letrozole. The entire visit, after she told me my Oncotype score of 21 meant I didn't need chemo, was about the side effects. I wasn't supposed to start the AI until March, so I had time, but in that time I had questions. I contacted the nurse navigator with my questions and was told she passed them on to the MO. I didn't hear from her so I did my own research and agonized about it for three weeks. I finally decided not to take the Letrozole. I cancelled my lab appointment and MO appointment which was scheduled for 4 months after my initial visit. I received a phone call that very same day from the MO, just a few hours after cancelling. I was so upset I didn't pick up the phone, but I returned the call the next day. I left a message with the person who answered the phone, told her I decided not to take the medication, told her why, that I cancelled the appointments and that the MO could call me back but that I doubted I would change my mind. That was over a month ago, never heard from the MO again and I don't expect to.
9. I feel so lost in the system. I plan to go back to work, and try to forget all about breast cancer. I feel the doctors only think of me when I am in front of them, and even then I am not a person, I am $$$. So, I am going to try not to think of cancer except for the few minutes I am in front of them! I honestly doubt I will keep follow up appointments for long. I relied on my gynecologist for breast health before this, she was the one who listened to me about the pain I was feeling in my breast and ordered the diagnostic mammogram and ultrasound. She actually cares about all of her patients. I feel confident continuing with her. I will see her in the fall, by then I might have a different attitude, but right now I am hurt and angry.
I was the first to have breast cancer in my immediate family. Within the year I was diagnosed, my 82 year old mother was diagnose as was my sister. My sister had both breast cancer and lymphoma at the same time and fought for nine years before she passed away. Yesterday my other sister had a biopsy and we are now waiting for results. I am getting ready to do my 30 min walk, so hopefully the sun and fresh air will cheer me up. I hate feeling down, but I feel I have no connection with the doctors and that I am totally alone dealing with this. I still want to know how women get BMX without having cancer in both breasts or being positive for BRCA 1 or 2? Right now I don't know which I hate worse, the cancer or my doctors? I feel stuck now, so I just need to get the note to return to work, then I will be free to do what I want to.
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I deleted my post, which was a VERY long rant, because I just needed to write it. Short version, cancer sucks and cancer care can suck too!
I should be rejoicing because I am so lucky to be going back to work soon, but all I can focus on is my doctor visit next week and how I feel rejected by my doctors. (doubtful I will even see my doctor, most likely a PA). I know I will feel 100% better once I get back to my job and the "real" world. I didn't feel anyone needed to read my venting.
This community really can be a life saver! I am very thankful to be part of it.
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Mavsmom, I read your whole earlier post. Very interesting and confusing. It is good to have it all written out to get it out of your system. I hope you saved it for yourself anyway. I usually write long posts in a word processor and paste them into the forum. It is also good for future reference. I save EVERYTHING. But as you noticed, doctors aren't interested. I sit with my phone in MO appts and say, "you want to see this?" No. I guess I have an unfair advantage being involved with the medical establishment for so long (30 years) due to my MS dx. I only see doctors who do what I want. Sometimes they have to be trained (if they are trainable, some are, some aren't) or I move on to another doctor. That's not always easy because there aren't an unlimited number of doctors where I live. I know it is also difficult to go through all the hassle of going from facility to facility to find the one that best suits you. And then after you go through all the hassle and sit through a long appointment (most of the time spent waiting), you just want to get out of there. I do it every time and as soon as I leave say to myself, "why didn't you say that or ask this?" I hope that at your appointment next week, you can be assertive and request (demand) what you want. I hate being pushed around by doctors. I try not to let that happen. How many medical practices have I been thrown our of? Amazingly, only one.
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Thank you Jaycee! I'm sorry I wrote so much.
No point in asking for what I want because they can't give it to me. I want the open breast wounds, one is 3"X4", one 2"X1" and one 1/2" X1", to heal. I want to take a shower and dry my body off without patting wounds and covering with bandages.
Someone posted a really good article on radiology burns and how they differ from thermal burns. It explains what happened to me in 2003. I still don't understand what happened to my skin cells where I was previously burned, during or after my DIEP reconstruction. My skin in those areas turned black, like a burnt piece of meat on a grill. My home care nurse called the doctor and asked for Santyl cream, which helped. I don't have the nurse come to my home anymore.
If you think of a circle, everything inside the circle is granular in nature, no dermal or epidermal cells. I'm told those cells will grow from the circumference inward. Not sure that is happening. No creams can grow skin so all my plastic surgeon told me to do was to use soap and water and keep them covered.
I feel guilty for wanting someone at the cancer hospital to at least seem to care about me, but I know that is too unrealistic. For insurance reasons, I can't shop around for new doctors, its too late. I should have done that in Dec but because I was in shock and with the holiday pressure, I didn't do that.
Oh well, live and learn. I can't change how the doctors treat me, only how I react to them. I am reacting by staying away as much as possible. Next week may be my last appointment with the plastic surgeon, no one tells me anything until the day of my appointment. There is no long term plan. I read there are stages with DIEP reconstruction involving a second or third surgery, but when I asked they acted like I was “one and done" as far as surgery is concerned. I don't want anymore surgery. My body looks horrible. The fake breast is so much smaller than my real one.
To answer your question, I did keep a copy of what I wrote. I'm glad I did because I don't want to forget all the reasons to not go there again if I get another recurrence some day.
You mentioned you worked in medical industry for years, I worked in veterinary medicine for years, many years ago. It is safe to say that Veterinarians and Vet. Techs have more compassion and concern for their patients than anyone I came across at the cancer hospital. Maybe seeing people die has made them all strive to stay unattached
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New rant on incompetence. Had brain MRI because of issues last week Monday (maybe mets???) Primary doc rushed an appointment with neurology for me tomorrow morning. and pushed to get me in since they did not have an opening until JULY!!! Get a call this morning that they need more scans done and no idea who requested but I had to go in. Had to arrange to have someone take care of grandkid I was watching to get it done. Of course contrast and IV. They told me they'd know in 10 minutes if it was good or not. So sat and waited. Got ok and left. Almost home when get another call to go back again!!! 3 times to sit in that tube with that pounding on my head and needle in my arm. Still don't know if it worked. Bet they are not there tomorrow when I go to neurologist either and that appointment will be a waste of time too. Hey....apparently I have nothing to do but sit and spend money on appointments for no reason....right?????
Isn't like they don't know how to do MRI either!! UGH.
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Mavsmom, two things. First, when I went to a presentation by a BS that was given at my in town support group, he spent the whole meeting on breast reconstruction. I remember that several times, he talked about certain types of reconstruction not being possible on skin that had been radiated. He talked about exactly what you describe. I searched about it and it seems that any kind of flap surgery is ok where they use your own skin. The problem occurs when the radiated skin is used and it cannot handle the trauma of the surgery. Did they tell you about this?
Second, I need to correct a misconception you got from my post. When I said I was involved with the medical establishment, I didn't mean I worked in it. I was diagnosed with MS when I was 41 and have had to deal with medical people because of that. MS is much easier to ignore than cancer so being in denial for years worked for a while. Later, when I had to deal with it, I learned how to work the system. That experience came in handy when I got the cancer diagnosis. I already knew about what could go wrong and usually did. (I did actually work in a hospital kitchen when I was in college but I don't think that counts as working in the medical field.)
bcincolorado, what a mess. They called you back? Crazy. But, as I've mentioned before, these practices make the big bucks with procedures (and scans) so this is not that surprising. Every time I go to my neuro for my MS (not often), they want to do an MRI. The office visit you will have with the doctor will be expensive but not nearly as expensive as the MRI. Or all the MRI's.
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I'm finishing with chemo next monday. Next step surgery. I should have an apointment with SO today to planning surgery. Went to the hospital. No docs working today because of a gremial trouble. They reprogramed my apointment. May 29! Wtf? More than a month later. I supose that a cellular regrowth is not a problem for them 😤
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Yndorian, that's ridiculous. Anyone you can call and bitch at? Worth a try. Plus it lets some tension off and could actually work. So you get your planning appointment a month later which pushes the surgery even later. Unacceptable. Can you call your MO and see if they can push things along? BTW, what is gremial trouble?
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Yndorian, the surgery normally isn't until 4-6 weeks after your last chemo. There is a school of thought that one could wait up to 3 months before getting surgery because even though treatment is done chemo is still within the body.
Sorry to hear you're being hassled 8(
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So very happy I found this thread - it's really what I needed today. I posted this elsewhere, but I think it's better here.
I am so very tired of being tired.
I am almost done with chemo after 5 months. My last chemo treatment, assuming
my WBC rebounds from last week is in two days. I feel like I should be in
a more celebratory mood. I keep getting messages
from friends and family asking when we can lift a glass of champagne and kiss
chemo goodbye. (Yeah, no - the idea of alcohol right now is unappealing.)And yet, all I can think about is how freaking exhausted I
am. How this one last chemo treatment is
only going to make me feel worse before I feel better. How, after 5 months, my nausea is getting worse. How my nails are about to fall off. How I still don’t have eyebrows or eyelashes. How long it’s going to take to even start to
look and feel normal again.I want to feel grateful, or even just relieved. Instead I can’t mentally get past the next week
and the knowledge that I’m going to feel like crap for the next 7-9 days. This whole time I’ve not once been tempted to
quit early or ask for dose reduction. I’ve
gutted it out and allowed myself to feel a small amount of pride at how tough I
was. I agreed to adding Carboplatin to Taxol,
knowing it was more toxic, but that it could increase my long-term survival
chances.But I swear that if I walked into my MO’s office and he told
me that I could opt out of my last treatment, I’d be tempted to do it, even
knowing that finishing my course of treatment increases my odds. I won’t really and I won’t even ask about it,
but I am soooo ready to be done with this shyte.0
