STEAM ROOM FOR ANGER
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Yesterday was my first cataract surgery. The fun started on Friday afternoon. My fault, really, because I was supposed to call them to register three days before but I didn't see that. So much paperwork. They called me at 2 PM Fri. and did a bunch of questions on the phone. I asked if they would use my port and she said she would ask. She never did. She did say that I needed to bring them my last "progress notes" from my oncologist or the anesthesiologist wouldn't work on me. Good to know so far in advance. I scramble down to onc office and get the notes. Interesting. I'd never seen those before. Lots of errors. The phone person also told me that I needed to be there at 9 AM. My surgeon said 9:45. I have it on the order. Whatever. Yesterday, Monday, I get my port accessed at 8:15 AM. (DH is driving me all over and the dog is indignant.) I get to Mountain View (not my regular hospital) at 9 and wait until 9:45. That's when they start. Of course, the anesthesiologist would not use my port. He said something like it is too small and if my blood pressure drops during surgery, he wouldn't be able to push fluids fast enough. That is bull dookey, of course, but I knew he as not going to change his mind. I had a really good guy start the IV and it was fine. They use my favorite anesthesia, Versed, so I don't remember anything. But I also don't remember what they told me afterward. DH was supposed to be listening (he even signed a paper saying he heard it all) but it was a good thing they also gave us written instructions. Big problem is I'm not supposed to sleep on my left side. (First surgery was on the left eye.) I can only sleep on my left side. One time I had vertigo really bad, I had slept on my right side. That was years ago but I still try not to sleep on my right side. And you have to sleep propped up on two pillows which I hate. Oh, and I had this huge eye patch taped to my face. I got maybe two hours. I went to my optometrist here this morning and got the patch off. I have to put three different kinds of eye drops in four times a day. I can't sleep on my left side for a week and I have to put a patch on when I sleep. Showering is ok if you don't get water in your eye. How would you do that, I wonder. So this is not all that much fun but I hope the payoff is worth it. I can see ok to read, watch TV and read/type on my computer. That's all I do.
Fun, Friday/Monday, right? On a good note, there is way less pink junk on NFL football and they do public service announcements for awareness of all cancers. That was good to hear.
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Jaycee, that must have been some surgery! Everyone I know who has had cataract surgery is stone cold awake for the entire thing. They strap you to the bed, put freezing drops in your eye and go to town. You walk out, patched up and horrified half an hour later. I think it's inhumane! Hoping for a speedy recovery for you!
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runor, cataract surgery has advanced a lot. It is really no big deal. I just wish I had known the truth about certain aspects BEFORE the fact, like that the guy would not use my port. The surgeon's staff humors you by telling you whatever they think you want to hear. Like the port thing. When I asked them about it, they said, "oh yeah, they do that all the time." I left out the best part. When they wheeled me out to be picked up by DH at the door, DH was in the driveway picking up nails. He had seen a construction truck and some guys working when we arrived. He worked construction when he was a kid with his dad. They never dropped a nail anywhere and if they did, they went back and picked them up. He always checks when he sees workers. He picked up about 15 nails in the driveway that people use to exit the facility. This really tells you more about him than the facility. We backed out of the driveway, opposite the nails.
I'm feeling a lot better. I just need some sleep. Last night I was told not to take my Ativan. Tonight, I can. Yay.
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nice, lita. Not pink either, bonus.
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Oh, Lita57, I love that!
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Not happy. Not happy at all.
I was changing PS's to have my surgery in the proper treatment window indicated for my type of cancer after neoadjuvant chemo because the date I was given really is too far out for my type of cancer...I had to go in person to do this because I didn't have the number I needed and the general number for the office was just a recording asking me to leave a message. I finally got in touch with the right person but now my BS, who I like, can't do the surgery much sooner and the ORs are all booked up. I don't want to leave my current facility but I would also like to not die so I decided to check around at other facilities.
Place #2, which originally told me they could do it in the necessary time frame, said I need to have a follow up with the BS I had a consultation with months ago...understood, but there is not an appointment for that until AFTER the soonest my current place can do the surgery, ok, understood, I don't have a problem seeing a different BS, only they will not let me see a BS there who has sooner availability because their policy is you can only see the surgeon you saw at your first consultation. WTF? Well ok, if I am still considered a patient and they won't let me see someone who can get the cancer out of me in the proper time frame, as a matter of policy and not lack of availability, then my policy is reporting policies that needlessly endanger patient lives to JCHO.
Place #3 is happy to see me this week for a consultation but is out of network with my insurance.
I am positive I did not have a pCR to my chemotherapy because the tumor is still visible on MRI so those resistant cells will get almost a full tumor doubling time to multiply unless something can get worked out. In the month before my chemotherapy it was growing so fast it was visible. To make matters worse, I have increased angiogenesis and I now theoretically have more TMEM sites, in other words, more doors, more highways for cancer cells.
My surgery was supposed to be 3 to 4 weeks from my last infusion, 6 weeks max.
I'm just very upset about all of this. Why was I was even assigned a PS who wanted to book so far out to begin with?
The surgery scheduler for the new PS recommended I see if my oncologist can do anything about and I sent a message but if the BS no longer has anything sooner and there are no OR slots then I don't know what can be done other than find another facility, or just sit here twiddling my thumbs while my odds of survival drop.
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WC3- so sorry you’re having to deal with stupid policies that don’t make any sense. So frustrating. Since you mention PS I’m guessing you’re having recon as the same time? May i ask what kind of recon?
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Lula73:
I am having expanders placed and will then have DIEP or some similar reconstruction when I gain enough weight for it as I lost weight during chemo. I actually have enough fat in my inner thighs and buttox now but my facility is no longer using the inner thighs due to the risk of lymphedema and they don't like to use the buttox as a donor site because of the difficulties having incisions on both sides of my body presents...one of the PSs also said it will look like a shark took a bite out of my butt but he hasn't seen my butt...if a shark took a bite out of my butt, I would then have a nice butt and jeans that fit would be much easier to find.
NOLA offers some more options but they are also out of network with my insurance, my insurance only covers their Crecent City hospital, not their St. Charles hospital, it would take two to four round trips across the country, and that would likely have to be by train, bus or car across the country as I don't think I can fly.
But I am just more concerned with getting the cancer out right now and mentioned I was willing to go flat temporarily to do it. They think that will potentially ruin my chances for reconstruction though, thus the need for temoprary expanders.
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So, going flat will not mess up your chance for recon if you go DIEP or SGAP. BUT your outcome would be aesthetically better with skin/nipple sparing. Using the thigh flap more often than not causes permanent numbness across the back of the thighs (not a good thing as we need those muscles as we age) so probably a good thing not to use them.
Can you elaborate on thinking you can’t fly? Almost all of us fly to NOLA to have the surgery. If NOLA can get you in and do a mx with immediate SGAP at Crescent City so 1/2 the bills are in network I’d jump on it. Alternatives to NOLA to check out would be Dr Craig Blum with Sweetgrass PS and Dr Marga Massey both in Charleston, SC. Both were NOLA surgeons and they moved back home for family reasons. And both take additional insurances other than what NOLA takes. Most ladies that go to NOLA or SC only fly out there 2-3 times overall. Consult is done by phone and email, fly out for stage 1, fly out for stage 2. If you need nipple recon or another revision you’d fly out for stage 3. Most of us are good to go after stage 2. Trust me when I tell you it’s worth it
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My dog has cancer. I know he is old, 12 to be exact, but really!? It’s not bad enough that I have cancer with a shitty prognosis but my dog too? Everyone in the family loves him. They always try to steal him when we visit. He was supposed to be there to comfort them when I’m gone, but now it’s going to be 2 huge hits in a small time frame from the same disease. What’s worse is he might have another year or two if we could afford treatment, but because of my cancer I can’t work and from my care there is financial burden already. If I could,we could take care of him the way he deserves. I’m just so angry with this disease.
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Lula73:
I don't think it safe for me to fly right now due to another condition. The lower cabin pressure might pose a problem for me.
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Parry~ I am terribly sorry about your doggie. I know that they become kids to us. Our sweet tag is getting up there as well. I know soon we will have to put him down. But I don’t like hearing a precious dog, who can’t speak of pain..... like a child .... gets cancer. I just hate it more than anything in this world. No matter what kind. Sending hugs to you ! ~M
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I love your pin. Makes so much sense. I admire your “solve it” attitude. Take care. Maire
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it's kind of sad and funny at the same time that only one person publicly noticed that I was leaving BCO. Candy, I left because I really was affected by the journey that Patty took to her ultimate end. I've seen so many members of BCO pass this past three years that I thought perhaps it was time to create some distance between me and breast cancer. I'm still not out of the woods but am choosing to move away from thinking about cancer every day. This board and the ladies here have provided me with the strength to do just that. I came back today because I lost another friend last night to triple negative BC. Cancer is such a bitch! I'm off again ladies, and will check back now and then. Lita I love you, you are my heroine!0 -
Parrynd1:
Sorry to hear about your dog. I had a dog and cat, both of whome I had to euthanize due to cancer. Ironically my dog had breast cancer. She had a kind that rare metastasized but I think hers did. My family had financial difficulties at the time but miraculously were were able to cone up with money for the surgery. Unforunately the tumor started growing back instantly and quickly and we were unable to come up with the money for a second surgery while the tumor was still operable. I believe her cancet was hormone driven as she was not spayed before her first heat and had discharge ftom that teet during her first heat.
My cat actually had a rare virally induced skin cancer due to being immunocompromised due to feline aids. He survived that and ended up developing inoperable oral squamous cell carinoma. The only treatment for that is radiation but he was 17, the cancer became advance quickly, and his vets and I felt thar the benefit to cost of quality of life did not work out in his favor. We were going to do a clinical trial with a compound I found that showed promise in rats, but his condition deteriorated too quickly and I had to euthanize him so he wouldn't starve to death.
After having to euthanize some of my previous pets, and realizing the traumatic aspect of it to them waa going to the vet, and the traumatic aspect of it to me was my human notions of understanding of death and their stress over going to the vet stressing me, I put things in perspective and was able to make better decisions for my cat than I had for my previous pets.
I realized that my cat likely had no concept of death in the way humans do. We understand that death is the end of our existence...at least in our current form. My cat probably had no such notions. All my cat knew was that he didn't feel well, and he was waiting to feel better, only I knew that was not going to happen. His tumor was ulcerative and like a wound healing in reverse. When it got to the point where he could no longer eat and I couldn't make him comfortable, even with steroids, appetite stimulants and narcotic pain killer injections, I decided to have him euthanized at home.
I have no regrets over this. The vet who came to administer the euthanasia was a very kind lady who he did not find frightening. He was laying in my bedroom next to his water with his back to us and after petting him and talking to him him kindly, she administered a dose of a strong sedative. After a minute or two he became drowsy, put his head down, and closed his eyes, but was still responsive to touch. We let him stay that way for a few minutes so he could have the pleasure of rest and relief from his discomfort, and then she administered another dose which was essentially an overdose that rendered him unconscious and slowed his heart rate to almost nothingi She then pur a catheter in his leg and injected the drug that stopped his heart completely.
He remained completely relaxed through the entire process and did not show any signs of stress and it was honestly the only time I didn't feel horrible about a pet's death outside of the loss itself.
Home euthanasia is more expensive than taking them to the vet to euthanze them but well worth the extra money many times over in my opinion.
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My poor old german shepherd was struggling to breathe from cancer tumors my Dad had him put to sleep.
Cancer is horrible, I pray to God I don't suffer at the end. I wasn't with my SIL at the end but she was pretty doped up. She was unable to eat but kidneys were somewhat functioning.
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I won't suffer like that. When I'm done with the side effects of txs if i go stage 4, I'll expedite my impending death. Qol all the way.
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MC3
Thanks. I think I’m relating my diagnosis to his, but you are right. Pets are great because they can be so smart and loving and simple in the way that they just know they don’t feel good and are waiting to. He will be my first pet I may need to put down. He has mouth cancer, Ameloblastoma. Rarely malignant and in his case he is. I didn’t even know a home euthanasia was an option. He hates the vet after a prior surgery when he was young to remove a staple he had eaten. He recovered great from that. Seeing how he recovered from a simple biopsy is worrisome even if we could afford surgery and treatment. I haven’t found any clinical trials available to him, but I’ll keep looking...haven’t thrown in the towel yet!
Meow13
I agree. Cancer is not only terrible but also an epidemic I see even more now, and have the same fears. I hope the end is either quick or comfortable no matter what the cause.
I met a lady whose dad passed away and had brain cancer. He ended up dying 3 years after diagnosis, but from something completely different. Goes to show you never know what will happen. Same for those who have been told they have x amount of years and live much longer. My cancer terrifies me, makes me sad, angry and generally feeling like I got the shit end of the stick. I can choose to not let it run or ruin whatever time me or my family (dogs included) have here. There is always that fear. I guess living a semi normal and happy a life I can is my big F U to cancer. I wish it could be bigger, lol. Someday it will be I hope. Do yu think I can flip the bird from heaven on that day?
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Molliefish, I think more people than you expect noticed your leaving. I understand your reasoning and sometimes I debate if continued presence here supports me or keeps reminding me of something I'd be better off forgetting.
In the beginning, I was here a lot. As time goes by longer period go where I don't check in. Yet, at the end of the day, if I think I can' forget about cancer, I am fooling myself. I can't forget. Which is not to say I can't move on. But I move on with eyes wide open, and that is the burden, isn't it. The REALITY that is ever so unyielding and unknown. The future, with all its possibilities, both good and bad. Like you I sometimes think about quitting BCO. But then I realize that here, and only here, do I find myself amongst other who know. KNOW. If we were all in a room we wouldn't even have to say it. We'd look at each other and a connection would pass between us and yup, we are linked by having had our happy little bubbles burst in a doctor's office. It is absolutely true that no one can understand the gravity and profound effect until it happens to them. It can be an isolating and bewildering event. It was for me. But not here. Here I can be the most real I can be anywhere. The others in my life don't want to hear it anymore. They want to move on. Hell, I want to move on! And some days I do. I have some fabulous days! BUt then when I have a bad day and need to not feel so alone with this shit, I come here. At this point it fills a very real need in my life. When I hear someone newly diagnosed I tell them to come here and start reading.
But I fully understand the need to step back. I think about doing the same. In some ways, I already have. You will know what is best for you and that is exactly what you should do!
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Molliefish,
I think it’s understandable to take a break. I do too, and in the few years I’ve had it I’ve met some great people and lost some as well. Sometimes I think it’s so great to have such a community of people going through this together, but sometimes I feel like it’s a devil in disguise friendship circle. It’s hard. Cancer sucks and has brought out anger in me I didn’t know I had. I wouldn’t trade the time I’ve spent here or people I’ve met and connected with though. I’d definitely subtract the cancer if I could, but that’s just life.I’m realizing I don’t care about seeing the world or buying a new car, but connecting with people because we all go someway somehow. Maybe I can help them how they have me, maybe not, that’s ok too. We all have to do what’s right for us.
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I'm fairly new here, diagnosed in early June, and I probably started lurking here soon after. When I had a hysterectomy ten years ago due to endometrial/uterine cancer, I joined Hystersisters.com (great place, highly recommend it for those who are hollow in the nether regions) and I spent a lot of time there for the first month or so. I gradually tapered off, I guess once I was back at work and had other things on my mind. I don't think I checked in at all after a few months. But, the hysterectomy was a one and done, no chemo or radiation, which perhaps made it easier to put behind me and think of it in the past tense. This time, I've had a lumpectomy and re-excision, then an interruption for a different cancer and surgery to remove that, so I still have to do radiation. And anti-hormonals. 🙁 And, since the other cancer was borderline in size but the doctor said no chemo, I'll have frequent scans to check pretty much everything, I guess because I am a crap magnet. So this seems such a lengthy process compared to the hysterectomy experience, and I may need to stick around here to occasionally rant, vent, or just feel less mentally alone. But there are many days where I already forget about the bc, which I'm sure will change when the daily zaps start. And there's nothing like a different and more major surgery to get your mind off a lumpectomy!
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Molliefish, I completely understand. Sometimes I stay away because it makes cancer too much in my face. I need to step away and live life.
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molliefish- I read your message about leaving and was disappointed as you add so much to the forums, however I also understand needing to put some distance in place. I didn’t post anything about your leaving because you said you were leaving and if you’re not on the boards you wouldn’t see the message anyway. I’m so sorry for the loss of your friends. I hope you find the support you need here on BCO.
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My whippet was diagnosed with liver cancer last year in October and given two months to live, tops. I didn't have the money for treatment and, having gone myself through chemo didn't want to subject him to it. Got him on a home cooked diet of grilled chicken breast, boiled sweet potatoes and fat free cottage cheese, CBD oil and milk thistle extract. He's still alive, eating, playing with the cats and happy. I know that he didn't have long anyway, he's 12 y.o., but each month I can give him is a victory. When he won't be comfortable anymore I will put him to sleep even if my heart is breaking just thinking of it.
I also took breaks from the forum many times during these past 9 years. But I a!ways come back.
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Molliefish
I saw your post about leaving the BcOrg Boards. It is something I myself have been thinking about. I think we all need a break from time to time.
It's always here to come back to.
I hope you find enough emotional support through your family and friends. I don't have a lot of support in that respect but can get by with DH. I'm pretty independent....
Best of luck to you.
GP
Edited to correct name spelling - sorry Molliefish!
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Molliefish - I, too, understand why you are taking a break. It's probably time for me to do the same thing, even though I only have 18 months under my belt. I feel like the more I am on it, the Moore I think about my cancer and I know I should be distancing myself from it instead. I have a pretty full life and I don't want cancer to be a big part of it like it was last year. That being said, I still look to all of you for support, so I don't see myself totally leaving.
Ann
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molliefish: I also read your message about leaving and I also didn't comment at the time because you wouldn't see it if you were leaving. I hope you don't take it personally that no one commented because lots of folks leave from time to time.
I hope you were able to rest and recharge a little bit during your two week break.
Welcome Back
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Thanks to all, you truly are the one group of people that gets it. Love to all.
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Molliefish-
Only you can make the decision to leave BCO. We understand. But I will miss you. And all who post here, I would miss you too. I know new ones come (unfortunately), and some leave us for their eternal home, and some need to move past this group for their peace of mind. But I think we have a special group here that can help each other out. We truly understand what it is like going through this fight where others just cannot truly know.
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