Mayo Clinic Connect
I am trying to find information from others who have had this treatment. My apointment is soon but my anxiety needs information sooner.
Liked by Teresa, Volunteer Mentor
Meltdown in 10 hours and 2 minutes. I’m starting to doubt my ability to go through with this. Trying desperately to get relaxation techniques to work. Meds arent even helping. My chest is getting tight so i know a panic attack is coming. My poor husband doesn’t know what to do – except keep his head down. Poor guy. I’m so sorry for being such a baby, reading it sounds pathetic but not even close to my stress level. Your support really does help. Sometimes I just need to vent.
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We left at 7 this morning and are finally in the car ramp with an hour drive. This place ,except EKG tech, has been absolutely horrible. Worst experience I’ve had with a hospital.
I’m so sorry to hear that your tough day was especially rough. What are the next steps?
That is so unfortunate – I was really hoping that it would be more bearable.
Was there anything that could have made the experience better?
Liked by Colleen Young, Connect Director
This is gonna be a long one. It was like a day from a horror movie for me. Putting out first that I have agorophobia, anxiety, claustrophobia, frantic anxiety over IV’s, panic attacks aND my PTSD is from 7 years(age 7-14) of sexual abuse by mystepfather with tying my arms being part of it , this was my day. I also do not handle exposure of very affected and horrible looking peri area at all. Getting me into a gown is impossible. I cannot tolerate the lack of dignity. Yes, my life is a struggle. All this background will be relevant later. This a new to me clinic at a teaching hospital. 3 people all asking me questions at check in desk – where they already have the 15 pages of information and history i filled out online. 15, i counted. In that paperwork is the discussion about the actual vulvar exam being done under sedation because of the pain, which is also recommended in the referral by my gyn. The referral also advises that from the time I walk through the front door to the time I go through OR doors, my husband is within 3 feet of me. She’s been my gyn for 19 years and 3 surgeries. All these issues have been discussed via email on the portal with my nurse.does vitals. Nurse is next. Fellow is next, gives me a sheet. Bonus points cuz it’s not paper towel size. So far, I’m just jittery and pacing, while my husband quards the door cuz I will run. Just sayin. Then comes the doctor, who talks for a bit then pulls on gloves. Oh hell no. We have the coversation – okay, i told him – you cannot do this without sedation because i simply cannot take the pain. Period. I have not sat down the entire time because I just can’t. I can’t even sit in the SUV. I have a pile of blankets in the back I lay on. It’s the only way I can ride in the car. So, I cannot move my right leg clear over to the stirrup because of the extra tissue growth, screen tissue and fissures. So we do this shuffle where I scoot and they keep moving my feet. Finally the nurse asks me if it’s painful to stretch my leg over that far. Doc has pissy expression. Unbelievably, he actually attempt to start an exam. I’m bawling and almost puking, come straight off the table and freak out. My husband flips out. Everyone goes to their corners while my husband attempts to calm me down. End result – the rest of pre-op today and exam under sedation next Thursday. So, also need blood work, xray, CT, PET, and EKG. Managed lab and xray. Had issues but made it. Hubby 3 feet away behind window during xray, btw. CT and PET go okay until I see the machine, they say I have an IV and then lay there, by myself, for 80 minutes so injected crap works it’s way around. I have 3 issues here – the IV (they make me hysterical ); hubby cannot even wait the 80 minutes in the prep room with me, let alone be there while the scan is done (he has always been allowed before, even at this hospital); and the tube part of the machine is longer than I am tall. 30 minutes later he is with while I get the IV in, med pushed, and IV removed. I laid there, tears running, waiting for 60 minutes to pass so he can come back in while I drink the next appropriate amount of nasty liquid, use the bathroom and get what’s left of the 20 minutes (of the 80) I have to wait getting precious hugs and a pep talk from hubby. He goes to waiting room to wait the 20 minutes it’s supposed to take so they can come get him back to the prep room so that he can keep my reaction under control when I wake up in a strange place. Meanwhile, a full blown panic attack is going on when THEY wake me up freaked out as hell, hustle me into the bathroom and when i come out he’s on his way through the doors and headed my direction! Thank God! Finally I’m calmer and in the into procedure area. Then tell me they are actually doing eyebrows to knees on scan instead of hips to knees like they had just said 90 minutes earlier. Can i gut it out? Finally pursuaded on the table she tries to stabilize my head, and yes I get the need for it, but covers most of my face. Panic reaction again. They need my hands clasped over my head. I conquer that, finally. They explain using a small pillow case from hands to shoulders to help take strain from my arms. Again, conquered. Then she breaks out the tape and proceeds to attempt to tape the pillowcase to my arms. I freakin lost it. After awhile, I am again managing the attempt to gut this out. Mius the Bean bag stabilizer so close around my face, and NO tape on the pillowcase. I close my eyes, knowing I can call for them to stop through the microphone. A bit later I open my eyes and I am IN THE TUBE! Seemingly stopped. Tears, nausea, and severe shaking start as I call for help on the microphone . Lady comes in, stands by the end of the tube, holds my hand and tris to talk me down. Only 2 minutes left. Okay, I can do this. Finally done, bawling, shaking, severe wheezing breaths and they hand me my coat and purse then send me out the door like nothing has happened.
Hi @vsinn2000 I wanted to check in and see how you are doing today. I hope you and your husband were able to get a good night’s rest after yesterday’s ordeal.
I slept well enough that I can’t tell you if he slept. If that makes sense. I know we overslept this morning. Thank you so much for asking.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
I am so sorry that you have to go through this. Given your personal history, I can understand how difficult this is for you!
Your must feel relieved that this step is behind you now. I hope that today can be a calmer day and you can rest from the ordeal.
Do you know yet when you will have the radiation treatment?
I wish you a restful day.
Blessings and prayers,
Thank you so much. Your words mean a lot. I have no idea when radiation will start. The 16th is a sedated exam as an outpatient. It was included in the referral and the paperwork I filled out before I went that the exam would have to be under sedation. I feel frustrated that it’s wasted 8 days that could have been been much better utilized. From the questions he asked I don’t think the doctor looked at my chart. It may sound paranoid but asking what scars are from when my chart clearly states I’ve had a hysterectomy and a tubiligation concerns me. He also wanted to know if I’d had pap test done. I may not be the brightest crayon in the box but it’s kind of hard to check for cervical cancer on someone who doesn’t have a cervix. I’m slowly figuring out some days are better than others. The good ones are a pleasant suprise but that can change quickly. So I’m learning. I’m not used to being so off balance with what happens, ok, I’m a control freak. Lol. When I have so little control now…. but I can adjust. Venting helps. My husband listens and is a rock when I need him to be but I think having this helps too. Again, thank you. I hope you have a good day as well. You have your concerns but take time for mine. I appreciate that!
I do understand your frustration when doctors ask you questions about what should be obvious to them by your medical history – however, I guess they want to hear you express to them what has happened (this is my best guess, not based on any scientific thought). I look at educating the doctors as part of our process when we go for medical treatment. Doesn’t really make it easier, but it may help you to reframe your thinking and not get so frustrated with the whole process.
I’m glad that your husband is so supportive of you, that is a blessing in the midst of the emotional chaos that you are feeling right now.
Keep posting and expressing your feelings and thoughts – you will get through this and be stronger eventually!
I’ve got a long road ahead of me wirh this doc. Wondering if a change is in order? My husband has been amazing, always willing to do whatever I need. I know it’s got to be over whelming for him but he just keeps going. Without violating any rules and realizing g it’s Mayo Clinics site, what are you seeing in teaching hospitals vs new therapies? Its really confusing.
I’m really not able to answer your question about teaching hospitals and new therapies all that well. At Mayo Connect, we are patients, just like you, and I don’t have any answers to how medical teams work, etc. Perhaps someone else can give you a perspective on that.
I’m sure your confusion comes from many different experiences right now. I sincerely wish you well as you wait for your next appointment.
Peace and strength,
Visinn, you are not violating any rules by talking about getting second opinions, finding treatment centers and/or clinical trials. People can recommend treatment centers other than Mayo Clinic on this site. Naturally, I recommend seeking a second opinion at Mayo 🙂 Here’s the contact info should you wish to make contact http://mayocl.in/1mtmR63
I found 2 clinical trials for vulvar cancer listed here: http://www.mayo.edu/research/clinical-trials/search-results?keyword=vulvar%20cancer
I’m not sure I understand your question regarding teaching hospitals vs. new therapies. Are you asking if teaching hospitals are more likely to offer new therapies? Can you elaborate?
Thanks so much Teresa. I’m noticing things now I guess that I just assumed worked well. Strange how your focus changes. I appreciate your thoughts and hope things go well for you also.
I was weighing the idea of a teaching hospital sticking to accepted/standard protocol in their clinics versus taking their research into their clinics. My brain does tend to wander into some convoluted lines of thinking.
Checking treatment plans and various supporting therapies at different facilities is eye opening as well.
Trying to stay focused on deciding what I want or expect out of the experience of treatment is difficult when so many new topics come that need investigated. This is definitely a situation where Type A/oldest child/mom is not helping! Lol. I can’t possibly learn it all!
Thank you for the information.
Super news! PET scan kindly reports no mets anywhere! Lymph nodes are all good! I have an apointment on the 21st at Mayo.
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