STEAM ROOM FOR ANGER

AliceBastable

I think the only reason I remember my surgery date is because it's an easy one, 7/11. I'm not up to a year yet, so I don't know how I'll feel, but I remember about a year after my hysterectomy, I just thought, "Oh, yeah, I had surgery around this time last year." I'm awful at marking dates as landmarks; I have to look up my hubby's birthday (and sometimes my son's!) and I usually forget our wedding anniversary. But I'm glad because it makes it very hard for me to obsess over dates with a negative connotation. I had to look up my parents' death dates recently, and mom passed just last year. But back to surgery, I'm lucky that I just needed that plus radiation plus Tamoxifen, so it's easier to think of it as being in the past, and not a current issue.

Snickersmom

Well, damn, Barbara!! I sure wish I had called you back tonight when I got your message. I thought you sounded pretty low but didn't realize you hit an anniversary date today. Last year when I hit my one year date, I thought I would be jumping for joy but instead, I pretty much cried all day. Now I am dreading that date again in May.

I'll call you tomorrow. We need to talk.

Hugs, Ann

VLH

I don't know why, but I rarely broke down during treatment. One memorable time was when I had to have a second lumpectomy because the first pathology report showed DCIS in the margins. The surgeon had flipflopped that first lumpectomy with another patient without explanation or apology. For the initial surgery, I had to make it to the huge downtown hospital for my sentinel node biopsy by 7 AM so had left home well before dawn. I can usually deal with not eating if needed, but am always thirsty and need to pee constantly when nervous. (Thanks, Fibromyalgia!) It's amazing how time seemed interminable when stuck on the uncomfortable surgical bed hooked up to machines. Next surgery, also after being prepped and hooked up to machines, no water, etc., I learned the procedure would be postponed over 2 1/2 hours. My friend can't drive at night so I had to frantically find another ride home. Again, the surgeon offered no apology or explanation. when she finally arrived, she handed me my pathology report and I felt sick when I saw that it showed triple negative instead of the ER-HER2+ on my core needle biopsy report. She'd had the info for days, but thought handing me the report in person was a kindness. Maybe for some people, but I would have much preferred the news sooner via a call or office visit so I could absorb the diagnosis, do some research, make a list of questions. Next, the surgery was going to be so late that the front office was going to be closed. Also, the parking garage where I told my second friend to park. Since Friend #1 has to leave, I can't hand off my phone & the only rude nurse I ever encountered at that facility tells me they can't ensure it will be safe. THAT is when I blubbered like a baby. i would never resent the surgeon staying in the office to, say, work in a newly diagnosed patient and eventually, the problems got sorted out, but UGH! Way too much stress at an already difficult time.

I've found myself far more tearful the last couple of months. I lost my cherished dog, who was also my work partner. I read the study showing that delaying chemo (seroma infection, oral antibiotics, then PICC line, IV antibiotics) means my prognosis is significantly worse. After losing my career, life savings, employer matching for savings, nice retirement, etc., at only 41 years old, now at 64 years old, I'm losing a part-time job I loved. I made huge sacrifices for my career and education to escape the financial struggles my family always faced and here I am finding myself more freaked out at the idea of my air conditioner dying than the now 30% chance I'll die from cancer. Maybe it's just easier to live in denial of the latter vs. the "real" threat of a financial disaster?

VLH

Jenkins, I'm glad that your director stepped up to apologize. I sometimes read where someone is offended by something that doesn't bother me, but I can't imagine anyone thinking what he did was acceptable behavior. My Fibromyalgia brain fog sometimes makes me say or do things I wouldn't in my "right mind" so I have to apologize. When he doubled down with the pretend coughing? Uh, NO!

Lyn

bella2013

Thank you sweet BCO sisters for sharing your cancerversary experiences. It helped me to not feel so isolated in that depressive state. Thank you also for the PM’s. It felt like angels were sent to deliver sweet encouraging messages to me.

I am feeling better. I don’t feel like I am sitting on the edge of an abyss. I can walk away from it and continue to live. Whew, I am relieved that Anniversary is history.

Blessings,

Barbara

VLH

I'm glad you're feeling better, Barbara / Bella.

Lyn

Amica

I can't get a return call from my oncologist's office. I called this morning telling them I am in pain and need help. No return phone call.

I called about another matter earlier this month; no return phone call then either.

I am wondering if I should make a complaint to the hospital's Customer Relations (complaint department) tomorrow. Is it the cancer center's policy not to return phone calls from Stage IV cancer patients or is it just too much to ask for? But even if I make a complaint, that doesn't help the pain, and I don't want to go to the ER for something that is not acute, but chronic cancer pain. I don't want to sit for hours in a room full of people with flu etc. The last time a family member had to go to the ER, it was a 14 hour wait, he literally had to wait over-night to the next day to see a doctor. That is the shitty healthcare we get in Canada. And I would imagine the ER doc would say, "why is your cancer center not helping you?" My answer would be "I don't know."

I mentioned this pain at my last appointment with my oncologist, at the end of the appointment to the nurse, and the doctor would not return to my examination room to address it, the nurse said, "we can address it at your next appointment (in a month)." Do they not realize that every minute in pain feels like an hour?

I hate my doctor, my cancer center, and most of all, shitty Canadian healthcare.

bcincolorado

Sorry you are dealing with that Amica. Sounds like either not enough doctors and too many patients to me. I would think you definitely should expect better care than that anywhere!!!!

marijen

So I went to confirm an appointment online and this is new. I was prompted to update the redundant Medicare questions. And then it prompted me to confirm my new Medicare number. What? I thought this was supposed to be Confidential information. Is my new number carrying through out their computer system? And then I checked my latest statement and sure enough the numbers are there, not most of them x'd out like the SSN was. So I asked Medicare why they would go to so much trouble to provide us the new numbers, send emails to make sure we got the cards, and the instructions to keep this number to ourselves, and then not x them out on the statements. And I am told Congress voted to replace the use of our SSN as our Medicare Health Insurance number, but there was no law to x out the new numbers/letters. Unfortunately I lost their response when I tried to save the chat.

WC3

marines:

My cable company prints my account number on every single advertisement they send along with my bill. Not quite as bad as a SSN or Medicare number but I still have to shred advertisements because of it

marijen

Yes I bought a small shredder for that purpose, so much junk in the mail with our addresses, birthdates, what else do they need? It just gets me that we are supposed to guard our information against identity theft and Medicare Fraud, but everyone else can do what they want with it. I imagine getting a new Medicare Health Insurance card is probably just as difficult as getting a new SSN! And the problem with going paperless is there are times when your electronic medical records are not available due to computer failures and you just might be in the ER. There's a recent article on that.

bcincolorado

Not to mention typos that happen when a doctor or assistant is in a hurry inputting information. Always double check your dosage on your medication too. I've had an issue with DH pills before for that reason.

marijen

I would like to be able to access my records directly and correct all the errors. Asking them makes them pissy.

bcincolorado

I can get most of my stuff online from primary and MO and lab work. If you want more though they charge you and that is not right.

Phoenixwmn

Neither of my surgeons has called or written me to make appts for a 1 yr follow-up. It'll be one year in April. While I honestly don't want to endure a mamm b/c my breasts still hurt SO much, I think they ought to at least be interested in how I'm doing. Kinda feels like they took the $$$$ and ran. Maybe that's not entirely fair, I don't know....but I'm hurting a lot still and sick of neuropathy & lymphedema and piles of medical bills/co-pays for oncology visits that do nothing ( although I really like my onc) and Lymphedema Therapy that seems to only provide relief for a few hours the day I have it; I'm sick of all of all of it. I'm pretty damn disgusted with family & friends who seem to think I'm "all better". I honestly don't want them to fawn over me or pity me but it'd sure be lovely if they could grasp I still need support. I feel like a different person now; I'm often bitchy and resentful and I keep trying to bury it and act like nothing's changed. Pain & Anastrozole put me through a deep depression that lasted for many months until I started taking Zinc to alleviate it. I'm tired all the damn time and I want my life back. Anybody else experiencing these things ???

AliceBastable

So far, I've had appointments set for me at the end of my previous appointment. I think once we're no longer on the 2, 3, or 4 month schedule, it's up to the patient to call for an appointment - at least that's how it's been for most doctors I've ever gone to. At the most, I might get an annual reminder card from a dentist or eye doctor, but it's up to me to make the appointment. The doctor might care, but their computer system doesn't.

marijen

Medicare Health Insurance number replacement for SSN - Now that I think of it, it’s worse than displaying our credit card numbers online...

Phoenix I think it depends on where you go for your healthcare. I am being followed for five years, first years every 3 months, then two years every six months, now every year, with mammograms every year from here to eternity or when I’ve had enough. Whichever come first.

Artista964

My docs are all in one group. I'm able to book a year out. Depends on how they do their calendars. The surgeons office I used to work for only booked 3 mo out because they didn't know their schedule, vacation, talks, etc further than that. And I can tell rescheduling all those pts is major time consuming and sucks for the pts too.

Snickersmom

My MO and BS are part of my team. It's the two of them, my surgeon's PA, charge nurse, and 2 other nurses on their staff. If one of their patients has chemo and radiation, they also have a nurse navigator. So I always see the same people every time I walk in the door. I am so impressed with the level of care I get and I'm so thankful for all of them. I am almost at 2 years and still see both MO and BS every 3-4 months. After I hit two years, my surgeon said he will see me every 6 months and my oncologist will keep me at 3-4 months for at least another year. I get my appointments set up at the end of previous appointments, too.

Anonymous

I didn't realize until tonight how angry I am.

I was diagnosed with breast cancer last April. My sister was diagnosed with breast cancer about three months later, triple-negative. Her treatment is so much more complicated than mine.

She sent me her schedule for the next few months. She's already had two surgeries and some chemo treatments. More chemo, then a third lumpectomy, then radiation.

I can't even explain what I'm feeling.

bcincolorado

Make sure your docs know about your sister too. They might change how you should be treated now.

fishingal68

I need to rant!

I've been through the trifecta -- chemo, surgery, radiation, and more chemo. Somewhere along the way, I ended up with heart damage. My oncologist referred me to my cardiologist, who is part of their 'system'. My oncologist's office told me from the start if I ever needed to have my port accessed, to call & then come to THEM to have it done. (Apparently, they don't trust the other people in the system to do it). On Monday, my cardiologist ordered labs, and when I called to schedule a time at the oncology clinic to have it done through my port, I was told they couldn't do it. They were 'too busy' and it was a 'new policy'. I was told I had to have an appointment with the oncologist. She refused to give me one, because I'm not due to see him until April. WTH??!!

I explained the predicament with the scheduler who kept arguing with me about it. I told her I have not had good experiences with the lab techs at the hospital, not to mention that I can only have labs drawn from 1 arm... (not to mention they will NOT access my port for the blood draw). She said, "Well, I've had labs done there, and they never leave me bruised." I responded with, "Have YOU had cancer treatments??!! Do you have anemia? Do you bruise easily? No, I didn't think so!!!" I am LIVID!!!

Why the hell did they make me get the port if they weren't going to let me use it??!!!

I've already filed a complaint at the hospital level. As soon as the clinic opens this morning, I'm going to call and ask for the office manager. If that is unsuccessful, I am going to file a complaint with the chief of staff.

Haven't we as cancer patients been through enough without them causing us more unnecessary pain & suffering? By going to the hospital lab, I will be exposed to not only flu (the hospital is full of flu patients) and other communicable diseases, but also the risk of lymphedema increases every time they put a tourniquet on my arm. The port access lab-draw is the only logical draw site.

Ladies, what are your thoughts?

Anonymous

bcincolorad, thanks for the suggestion. I have told her already and when I see her next week, I'm going to give her a copy of my sister's genetic blood test results.

Anonymous

fishingal68, reading about your situation makes me livid. I'm sorry you have to go through this.

Ask them for a written copy of their "policy."

If you don't get a proper response from the higher hospital authorities, tell them you are going to report it to an elected official for action. Don't just say it, do it if you have to. If you have a state medical board where you can send a complaint, tell them you're also going to file a complaint with them. Anything in writing, I'd send it certified, return receipt so you have a proof that they've received it.

Reading this scares me for the future of the medical profession/health insurance in our country.

Micmel

Fishing~WHENEVER I have any blood drawn it's always by my infusion nurses. It's gotta be. No way in hell should you be put through that. They just don't freaking get it. That is the DAMN reason we got the port. That makes me infuriated beyond belief when they blow it off because they are too busy. Bullshit. I'm too busy living to come to this place filled with Germs and get poked at over and over! And no way with a lymphatic arm problem! 😡😡😡😡I have it also no one touches my left arm. I'm so sorry. When I (nicely and calmly call and complain. Cry a little. It always works.). One thing Ive learned. Is after the patient leaves the room they turn into chatty Cathy's. If you're labeled a bad complainer. They never call back. Make a good friend in the practice. Then use that connection to help you. That's what I have done. It's helped tremendously. Appeal to their egos. Say I know this is your specialty. Please help me!? Make them feel smart. It works wonders. They eat that shit up. Sometimes you have to play their game to get what you need and want. You must advocate for yourself however you need to. Just be honest. And you. Cant go wrong. I'm so sorry. It really pisses me off. So I do what I need to do! Once a complaint is filed. Most oncologists notice that when your file is in front. Of them. They can elect not to take you on as a patient, that’s why you at least should try to kill them with kindness first. Because then they look like the huge asses they are !!

jaycee49

I've been having problems with my port use for the last year or so. There seem to be some new rules concerning nurses, etc. ability to access and de-access ports. I've had a Pet scan every 3-4 months for almost 3 years. For the first two, I would go to my onc nurse and have it accessed and a nurse from the infusion center (just because it is closer to the Pet scanner) would de-access it. This system ran smoothly and then something happened. I would get to the Pet scanner tech and they would say they are not supposed to use my port. I would say very authoritatively, you are using my port and they would. The infusion center nurses wouldn't come over to take it out so I would go back to onc nurse. All these locations are in a hospital complex, all very close together. One tech who liked using my port got injured or something and was out for a long time. The other one tried to refuse every time but I always convinced him. I asked my onc nurse, why all the resistance to using ports? She said they have gotten more strict with port use and which nurses are allowed to use them based on training and recent experience. She said she has to fill out a form EVERY MONTH and submit it to some accrediting organization that she has accessed a port and NAME the patient. This is a nurse who accesses ports at least 20 times per day. I don't know if this is a state thing but it might be. Maybe all states are tightening up on port use because they had some problem (like they got sued). Last Pet, I had a fill-in tech and she said she uses ports all the time. Why not?

If you are still reading this mess, there is also the story of my recent two cataract surgeries. At the first one, I had my port accessed by my onc nurse beforehand. The anesthesiologist said he would not use it. He said it would be TOO SMALL in case of an emergency. I had a really good nurse who got an IV started on my non-existent veins. So for the second cataract surgery, I didn't have my port accessed beforehand. THAT anesthesiologist said he would have used it. I requested the same nurse with the same good result. I lucked out but disaster could have ensued.

I'm not getting any IV meds right now. My last IV med was Aug 2014. My port is just for blood draws and scans. I must have it done that way. My onc nurse has NEVER said she was too busy. I do call and set up a time just to be courteous but she said I could come any time.

LoriCA

I can really sympathize about the issues with accessing the port. My scanning center flat out refuses to use my port even though my MO's staff has offered to access and remove it (they are in different locations but I'm willing to spend the extra time traveling between the two). I have one arm to use and my veins are shot so badly that one time before I had the port installed, 5 different people tried accessing a vein before calling in someone with ultrasound to locate a usable vein. The problem gets worse every time (a tech told me that Herceptin is very hard on veins). What used to be a simple procedure is now fraught with tension and it often takes 15-20 painful minutes just to get a usable vein. I've never had scanxiety or needle phobia but now I've developed intense anxiety over vein access. A few months ago they blew out two separate veins on my arm when I was getting contrast media for a scan and I had a bruise that went from my elbow to my wrist. And this is in a major hospital where there's no excuse for not having the proper equipment and training for accessing a port.

fishingal68

Thanks ladies for sharing your stories. As cancer patients, we go through enough trauma without having to endure torture to have labs drawn.

The oncology clinic still will not budge from their stance. As a matter of fact, the clinic director called me and we exchanged a very heated debate. She had the audacity to tell me that "we only draw labs on OUR patients." I emphatically told her I was their patient, and the only reason I had to see the cardiologist was because of the treatment I got at the oncology clinic. She was rude and hung up on me.

The hospital system's patient complaint person has called to try to smooth over my feelings, as has my cardiologist's office. I also wrote a letter to the chief of staff at the oncology clinic asking him to reconsider their policy. Although it will not make a difference for me personally (because by the time he gets it, I will have gone to the hospital for labs), perhaps it will make a difference for someone else.

I am still a mess over all of this. I never cry, but this disaster has turned me into a blubbering angry idiot. It shouldn't have to be this hard.

Artista964

yeah only the rns in the infusion center are allowed to use the port for labs. So it's iv and needles if I don't schedule an appt at the infusion center at the hospital system i use. Always been accomodating. The reason is they have the most experience over regular rns. Infection is always a risk. Anyone who wants labs sends it to the infusion center. I found out that they need orders to do the heparin flush at the end. So since my mo is not with the group anymore my pcp has orders for a certain number of months at a time for the ic to be able to flush after labs or for when it's the every 3 mo maintenance flush.

That's just nuts. I'd for sure file complaints everywhere you can.

I'd also change mo office. Your mo follows you for awhile after txs. Mine for life. You need an office that treats you right. My mo isn't in the hospital system anymore. She was during my txs. But because she goes to bat for you and cares, i did not go with the new mo at the hospital system.

Lita57

Sheezus Cripes! They CAN'T access my veins anymore because they are too weak, roll too much, collapse...you name it.

They HAVE to use my port for scans and infusions, and that's all there is to it. Yes, it's a pain because I have to go upstairs before all of my scans and get the port accessed (the techs in the scan depts. aren't trained to access ports because the nurses have to use special procedures as infection is a big risk, ergo I have to go upstairs every time).

I'd lodge a formal grievance, too. It's not like ports are a "new technology." They've been around for a while, and it shouldn't be a big deal to have it accessed by a trained person. I HATE it when they say they "are too busy." As many times as I've had to have mine accessed, it only takes a couple of minutes for them to put on ;the special gloves, a mask, and to clean the area with alcohol before "stabbing" me.