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Starting Radiation January, 2022

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  • Dicon
    Dicon Member Posts: 32
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    I’m late in responding jen2957, hip pain is probably a pinched nerve and not related to radiation, thankfully. Port is still in for now. I’m on #17 radiation tomorrow, so halfway. Using Aloe and coconut oil and Doc says my skin is doing better than most of his patients. They zap up my neck to get those lymph nodes and that’s beginning to feel swollen. I had a lot of lymphatic invasion so they go up the neck.
    Mostly feel really tired. RO said to walk every day at least 20 minutes each day and I have to fight the desire to take a nap instead. So far I’ve done the walks.

    Have no appetite and I’m wondering if anyone else has that side effect.

    Also diarrhea but I have microscopic colitis so it could be that.

  • gamzu710
    gamzu710 Member Posts: 203
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    Joining this thread; I had my "dry run" today and will have my first session Monday. I have 3 tattooed marks and a bunch of pen marks with tape over them and am feeling very annoyed because why couldn't they all just be pen marks if I was going to be stuck with the tape anyway? Oh, well.

    On the sort-of-plus side, I had an allergic itchy rash to Tegaderm dressings over my port during chemo but the radiation people apparently didn't check my chart and used Tegaderm tape on the marks. And, no reaction! I had constant rashes and hives throughout Taxol eventually culminating in anaphylaxis at week 9 so now I'm thinking the Tegaderm rash was actually just from my immune system being very angry about constant exposure to Taxol and reacting to everything (seriously, I got spots on my arms from Sudafed at one point during chemo, which I thought was impossible), and I'm not actually allergic to it. Yay.

    My attitude about radiation is honestly not great. I felt like I handled chemo pretty well but I'm just feeling grouchy about this whole thing now. Maybe because I felt like I understood pretty well exactly what the chemo was doing, but I don't really understand how or why radiation works. I believe that it does, because I've seen the studies and the statistics, but I don't truly get it.

  • kotchaj
    kotchaj Member Posts: 212
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    Hi gamzu710!!

    I was going to say how nice it was to see you on here. Then decided to NOT say that. But it is good to see a familiar name who I went through some chemo with. I start the week after you and I wonder why you ended up with the tape and the tattoos, too. I'm happy to hear that you didn't have a reaction to the Tegaderm, though.

    I was hoping I'd get a call this week to start next, but my RO decided he needed a vacation before I start, lol. I wonder if my MO has told him about me? I didn't think I was that bad, but who knows.

    I am having 16 treatments with 4 bursts at the end directly to the scar. My chemo didn't work on my cancer as it thought, but then my cancer ended up being IDC AND mucinous both. It got rid of one and the other one just grew. Surgery took care of the tumor and I'm hoping that this will take care of any micromets that may still be lurking around in there.

    Welcome.

  • gamzu710
    gamzu710 Member Posts: 203
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    Hello KotchAJ!! A Taxol thread buddy! Nice to see familiar names! I had seen your post about your tumor growing during chemo and was devastated for you, but I'm glad they've been able to pinpoint why that happened with the pathology. Mucinous, huh.

    I am doing 15 whole-breast treatments and then 4 boosts to the scar area, so pretty much the same treatment plan as you. Mine is in the prone position. I wonder what the difference is between 15 vs. 16 treatments. Are they radiating your nodes, too?

  • kotchaj
    kotchaj Member Posts: 212
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    Gamzu710

    Yes, my nodes are getting radiated along with the whole breast. I had 20 out of 21 nodes cancerous. Yes, mucinous. I told my MO that I didn't want to be a unicorn with the whole mucinous thing going on and my PA in the office said I needed to just be a horse, not a zebra, not a unicorn, just a horse:-) I love that they can laugh with me, it truly helps.

    You will be a week ahead of me so I hope that all goes well for you. Is your center close? We are driving about an hour one way for radiation, hubby is retired and has decided to be my chauffer. I'm going to let him! My job will be to find us a place to have dinner before we head home.

  • gamzu710
    gamzu710 Member Posts: 203
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    An hour each way! Yikes! What a grind. I can't imagine that; I guess I shouldn't complain at all about my setup! My radiation is in the same building as my chemo was: oncologist is on the 4th floor (with breast surgeon across the hall), radiation oncology is on the 1st floor. It's about 10 minutes drive away. And unlike the oncologist, they validate parking. I have my Herceptin infusion set up right after my radiation next Thursday, just have to get in the elevator. It's about as convenient as it could be, but I'm still grouchy about it. Prone position is disorienting and today when they were moving the table around it made me feel a bit dizzy. But on the plus side, because I'm face down, they said I can take my mask off for treatments.

    I was upset for you when I saw your post last month about the post-mastectomy pathology. Every time we think we've got things in hand on this mess of a journey, something seems to blitz us anyway. Hopefully the surgery and radiation will take care of all of it for you and the unexpected pathology news will ultimately make no difference whatsoever!

  • kotchaj
    kotchaj Member Posts: 212
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    Gamzu710

    Thank you. I was upset, too and really struggled with wrapping my head around it and coming to terms with it. It does make you feel like you're walking down a field filled with bombs and you don't know if the next step will be another bomb or it will be a safe step. It's so very hard to trust and just be. I then pulled up my big girl panties and remembered one of the ONLY things I can control out of this is how I respond to it emotionally and I will NOT let it take anymore away from me. I decided to bring out my sick sense of humor and deal with it. I posted on my FB page that I was naming my tumor Earl after the Dixie Chicks song, "Goodbye Earl" and not spend all of my waking moments doing the what ifs. If you aren't familiar with the song, look it up, and instead of Earl, just imagine your tumor:-).My son got engaged this last month so I've got a wedding coming up sometime in the next decade, lol. I say that because there isn't a date and they're not in a hurry to decide on one. I'm okay with that.

    We live in a very rural area, 5200 people in my hometown, so my MO has office hours here two days a week. We have to go to another one of their offices for Radiation. It's a bigger town so we will spend some time getting to know it well.I'm always a glass half full kinda girl, so I'm still staying positive that this will take care of whatever is left and that will be that. If not, well, we'll deal with that, too.

    It's okay to be grouchy about it. NONE of this is fun. That would be disorienting to be turned that way and then having it move on you. Does closing your eyes help or make it worse? It will be nice to have the mask off at least.

  • jen2957
    jen2957 Member Posts: 75
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    Hi, everyone! Today was supposed to be treatment #9, but instead, it ended up being the first time I have had an interruption in treatment- I drove my 35-40 mile trip to the hospital only to find that the machine had just overheated bc the water pump was out. Thankfully, it was my day to see my RO, so all was not lost. It pushed my date back by a day, though, so now I am likely not going to make my trip with my husband at all…UNLESS…it occurred to me that I should ask my RO if I can do treatment, then skip a week between the treatment and the five boosts. He said those boosts were optional, depending on how my skin is holding up at that time, so maybe skipping five days is feasible. May be worth asking the question.

    I did send my RO the Mepitel film research and he has approved me using it for the remainder of treatment. He can't endorse it, bc he has no personal experience with it, but agrees the research looks promising and it should not cause adverse effects to my treatment. Fingers crossed that it will protect my poor, stretched, thin tissue-expander skin!

    MFK and Star2017- everything still looking good with you guys? You're getting so close, MFK!!!

    KotchAJ- You nailed it with your comment on what a solitary journey this feels like at times. I am so thankful for you all and everyone else in this board. There's nothing like support from those who have walked the path themselves. Love the Earl name! It's perfect. Mine is named Bruce- as in Bruce Banner. He started out mild and nice, but now he is an angry, incorrigible, hulk (seriously, y'all- this tissue expander looks ridiculous)!

    Mermaid- don't feel like a jerk! You're entitled to a little frustration right now. I mean, really? What terrible timing. I hope your hubby is feeling well- as a former high school English teacher, I am impressed he has made it this far without being Covid positive. Best to both of you!

    Dicon- pinched nerves are miserable. It seems there is no quick relief. I have done some neural gliding exercises for my sciatica and for cervical disk herniation pain before, though, and it can be extremely helpful!

    Sunbunny- I didn’t realize I had a dry run (or what I call an undress rehearsal) until I was adding my appointments to my calendar and had an extra one. I called and they explained that they had to get me on the actual machine and line me up perfectly before starting treatment. I think they forget that we don’t know all the things they do- it’s just routine to them- so they forget some of the smaller details. How are you doing?

    Welcome gamzu710! I read your post right before I met with my RO today and told him how thankful I am they stopped doing tattoos at that facility. I was initially annoyed by the sharpie marks covered with Tegaderm, but I'm quickly realizing how easy I've got it in comparison. Speaking of tegaderm- glad your reaction turned out to be unrelated! And I'll second what others have said about being grouchy AND add that you can grouch away with us- you're among “your tribe."


  • star2017
    star2017 Member Posts: 370
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    Just had treatment 8/15 on my femur. So far, so good.

  • star2017
    star2017 Member Posts: 370
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    Regarding the tattoo marks, I realized after being tattoo-ed the second time around that I was allergic to the tattoo ink (the first time, I didn't think to associate the hives with the tattoos). Well, this time they were just going to use sharpies and then ended up doing one of those invisible/pink tattoos that only show up under certain lights. I thankfully didn't react to that, but I was SO stressed showering or getting dress/undressed bc I was constantly worried about the tape shifting and marks disappearing, so I am glad that there is still one tattoo point of reference.

  • txlorelei
    txlorelei Member Posts: 68
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    Today at treatment, they got me all lined up on the table and I waited for the machine to start. And waited. And waited. Finally the tech came to tell me that she had to move me to the other machine. At least I did get it completed.

    Anyone else feel the urge to cough or sneeze but have to hold it in until the program ends? I didn't want to shift out of alignment.

    20/30 complete and my skin is slightly pink and dry in spite of the creams. Today is the first time I felt noticeable fatigue.

    Good luck to everyone.

  • jen2957
    jen2957 Member Posts: 75
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    Star2017- I had no idea they had those pink tattoos; that’s very cool! Glad all is going well with your rads to your femur.

    TXLorelei-Oh, geez! I’m so glad they got you in and you didn’t miss a day of treatment. They have two machines at my facility, too, but they must be different, because they said “the machine you are on.” I’ll have to ask why I couldn’t have used it. I’ve read that dry desquamation typically hits sometime after a cumulative dose of 20 Gy, so you are hanging tough by getting to 20 sessions- hope it is as bad as it gets.
    No sneezing or coughing urge here yet, but I often have a sudden tickle in my mask or an itch after they tell me not to move! 😂 However, my cousin is married to a former detective and police academy instructor. He just happened to mention to us a few weeks ago that he and his special forces colleague had been talking about that very issue! He said the SF guy told him that they are trained to press their tongues firmly to the roof of their mouths if they feel like they're going to sneeze during a mission. It supposedly stops the urge and prevents the sneeze! I don’t know what they do about a cough.

  • gamzu710
    gamzu710 Member Posts: 203
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    #2 of 19 done this morning, still feeling very grumpy about it all. Having to shlep over, deal with their nightmare parking lot, take half my clothes off all for a 2-minute session where I'm processed and pushed about like a piece of meat, mostly in silence with some Muzak playing and while face down and unable to see anyone or anything, is really a drag. The whole thing is sterile and robotic and feels like an assembly line. I have a Herceptin infusion right after my treatment on Thursday and am, for the first time, actually looking forward to going to my MO's office. I'll be treated like a person and not a bolster pillow with a medical record number and a bunch of pen marks drawn all over it.

    Anyway, meh. I'm smearing Aquaphor on the treated breast in the dressing room after each session and hoping for the best. My stomach has seemed a little unsettled on the way home both days but it goes away and I don't have enough data yet to determine if it's actually a thing, a random coincidence, or maybe psychosomatic.

    Still no reaction to the Tegaderm dots, which I'm very pleased about. I'll mention it to the nurse when I have my Herceptin on Thursday because they've had to be careful with my port dressings; maybe they'll be willing to try it again. One of stickers came off Friday afternoon and the mark was still fine 3 days (and 3 showers) later when the tech fixed it on Monday so I'm just not going to stress about them coming off.

  • kotchaj
    kotchaj Member Posts: 212
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    Oh gamzu710,

    I'm so sorry that is how you're feeling about this. Not that you're supposed to go in there all excited, but it would be nice if they at least made you feel better about going there. It's okay to be grumpy and I would be, too about being treated that way. You did make me chuckle with the analogy of a bolster pillow with a MRN and some ink marks, though.

    I'm still waiting for my call to start! UGH. I know of someone else in my small town that was waiting and got the call on Monday so they get to start today. I'm not thrilled about going, but I am thrilled about getting it done and out of the way, lol.

    We are supposed to get some weather tomorrow afternoon so my husband said to be glad we wouldn't have to make the hour long drive there. We don't get much in the way of snow here like we did when we lived in upstate New York, so I'm a little happy to see some snow.

    Anyway, hang in there and please keep posting the updates.

  • gamzu710
    gamzu710 Member Posts: 203
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    I'm sorry you're still waiting, KotchAJ! Hopefuly you get the call you're hoping for tomorrow. Starting a routine of having to drive 2 hours a day for days on end is not exactly a small thing and I'm sorry that you're being forced to wait around at the mercy of their schedules so they can drop this on you at the last second.

  • mfk
    mfk Member Posts: 35
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    Hello friends - Finished today! Spent some extra quality time in the waiting area; you know things aren't going well when they page the physicist to the Trubeam room. In any case, can't complain overall because I've had very little in the way of side effects. RO and RN said to continue using the creams for two weeks. RO says any issues should start to resolve about one week from now. I go back for a follow-up visit with the RO in about a month. Secret of my success? No clue, but I have been drinking plenty of water, getting quality rest and applying a thin layer of Aquaphor several times a day. My husband hums the guitar riff from Aqualung when I mention it. Only two more weeks of that!

    Hug

  • kotchaj
    kotchaj Member Posts: 212
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    I finally got the call to start radiation, woohoo! I start on February 9th which I'm glad to start, but due to the later start, I won't get to go and see my family while they're in the US from the UK. I'm bummed about it, but will figure something out later. My husband and I will be going there to visit, but this would've been nice since they were over here and I'd get to go to see them in Florida for a few days. As it is now, I finish up on March 8th barring any delays, and they are there until the 13th. I think to plan that would be cutting it entirely too close for my comfort and not knowing if I'm going to have skin reactions on top of it is just too much stress to add to the bucket right now, lol.

    So, looking forward to next week when this gets me one step closer to getting my port out and being done:-)



  • oldladyblue
    oldladyblue Member Posts: 302
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    It's 9 days since my last radiation, still feel the heat in that breast when I put my hand on it. Skin still doing fine. Never did have to use any creams.

    Unfortunately though I ended up with Covid on Sunday. I think I have about every symptom of the illness. Sunday and Monday were the worst, I felt more ill and wiped than I did at any time during chemotherapy. Today, feeling better, but still sick. That is despite both Pfizer vaccines and the booster which I got before starting chemo. I have no idea where I got it, except perhaps at the restaurant I went out to last Thursday to celebrate being done with radiation (despite social distancing from all other patrons and staff).

  • mfk
    mfk Member Posts: 35
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    oldladyblue - so sorry to hear about your Covid. Not fair at all! I hope you continue to make progress in your recovery.

  • jen2957
    jen2957 Member Posts: 75
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    Congratulations, MFK!!!! We know you must be thrilled to be past this daily grind. It’s especially worth celebrating since your skin has held up so well! Hooray!

    KotchAJ- I had been holding on hope that I would be able to make my trip to Florida t week of March, too; it is just such a disappointment. I think what really stings most is the fact that it’s just one more thing Cancer has done to control our lives. I wish you had been given just a few more days so you could still feel comfortable making plans to go.

    Gamzu- even with a pleasant rads team, I feel like a piece of meat sometimes; I even refer to my treatment as going to the BBQ. I think I would just be generally ticked off and over it if I also had to deal with an unfriendly bunch of techs AND be face down. Geez. This whole thing sucks and I’m so sorry for all the crap we have to deal with. You need to order one of those Morse code bracelets- a friend got me one and I wear it when I’m feeling particularly over everything and everybody! No one can tell what it says, but it helps me cope. I recommend swear words! ;)

    Blue- well, crap! I mean, really? So sorry and hope you are continuing to feel better daily.

    My pity party this week has been that the machine was down Monday, as I mentioned, but my state was declared in a state of emergency bc of this ice storm, so my session today was cancelled and tomorrow may be as well. They really shouldn’t hammer the “it is imperative that you don’t miss a single appointment” mantra, bc it adds so much extra stress when things like this happen



  • gamzu710
    gamzu710 Member Posts: 203
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    KotchAJ--glad to hear you finally got the call you were waiting for! Major bummer about the family visit, though, I'm sorry. This process ruins so many random things.

    Jen--thanks, going to the BBQ put a smile on my face, maybe I'll start thinking of it that way. The nurse they have assigned to me is nice. But it just seems like being shoved around and processed through. They had to take more images and scans today that took up time and didn't tell me about it until I was already getting on the table. Apparently this is going to be a regular thing to "make sure everything lines up." Then they told me it was actually 20 sessions instead of 19, like I'd been told already (I wasn't) and added one more treatment at the end. OK, just one more day, but still. And just now I logged on after getting an automated message from MyChart and saw that I suddenly have a 1-hour "simulation" appointment after my treatment next Friday. Did they tell me about this when I was there this morning? Did they ask if it was OK with my schedule? Did they tell me what it's for? No, they did not. Rrrghh.

    I did have a brief meeting with a doctor, who gave me the interesting piece of information that he doesn't like the Aquaphor jelly because he thinks it's too viscous and greasy and requires more effort to rub in, which can itself have a negative impact on the skin. He recommended creams like Lubriderm and Cerave and said to focus more on moisturizing than creating a barrier. Food for thought.


  • mfk
    mfk Member Posts: 35
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    Gamzu - interesting comment on the Aquaphor. I will say that I smooth it on more than rub it in. I think the warm of your body helps draw it in, although that might just be my imagination. If anyone is using the Aquaphor, I recommend keeping an extra hand towel in the bathroom because you're not going to be able to wash that stuff off your hand immediately after application. On the plus side, your hands will be smooth as silk during the driest of winter weather.

  • jen2957
    jen2957 Member Posts: 75
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    Gamzu- Your little rant on the appointments and extended appointment times cracked me up! I can definitely relate! On the fifth day of treatment (🎶…my rads tech gave to me...🎶 😝 sorry, couldn’t resist), I showed up and they said, “We need to take some x-rays today.” I immediately thought something was wrong because I had no idea that was happening. Never mentioned before! Are yours done on every fifth treatment, too? Do you have boosts scheduled? If so, is that what your 1 hour simulation (that you didn’t sign up for) is for?

    I’ll chime in on the Aquaphor- I use the spray version so I don’t have to rub it in much. I do feel like I need to lightly wipe my hand over my skin to make it evenly cover, but I don’t have to apply any pressure to do that. It may be a bit lighter coverage than the jelly kind, but it still seems to do the job. I use it to “lock in” my lotion and/or Mometasone, because like you said, mfk, it is not going anywhere once it is on!

  • txlorelei
    txlorelei Member Posts: 68
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    My RO said I'd have X-rays once per week and I think I've figured out it's when the round part of the machine goes where I can't see it and a flat rectangular bit gets close to my face (I have no idea what the real names are).

    Yesterday's session was extra long while they drew marks on my skin to create a map for the boosts. They traced the same pattern on a plexiglass plate - not sure what that will do. My only problem was that holding my position that long made my arm painful. The tightness in that underarm has definitely gotten worse during treatment.

    Congrats to those who have finished and good luck to those who haven't. 6 more for me.


  • gamzu710
    gamzu710 Member Posts: 203
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    Jen2957--yes, I think the simulation is for the targeted boosts. The nurse mentioned offhand that this would be done, but made it sound like it would happen after the whole breast radiation, so when it suddenly appeared on my schedule for the same day as treatment #10, I was confused and annoyed.

    Imaging every 5 days? I don't know! Maybe you've given me the information they didn't! They said that it would be "every week," but not whether it would be the same day, or some regular interval, or some irregular interval, or whatever.

  • oldladyblue
    oldladyblue Member Posts: 302
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    Thanks ladies for your good wishes, I am recovering well from the really bad Covid days, the fatigue is sooo bad. Glad I was complete with radiation before I got sick.

    Gamzu - I am sorry your team isn't answering all of your questions. I had tatoos, magic marker marks, stickers, daily imaging, weekly imaging and a weekly meeting with the P.A. and Dr. My daily team was two wonderful women who always made sure I had no questions, and if I did, they got the doctor to answer them for me. I was well taken care of. So I'd say, ask more questions until you are happy.


  • gamzu710
    gamzu710 Member Posts: 203
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    #9 done today. Halfway mark tomorrow! My skin is starting to turn a little pink but the RO said it was pretty par for the course on what happens at this point, maybe even a little better.

    A study in two offices: my RO's office still has not had one single person tell me to my face that I have a 1-hour simulation appointment tomorrow after my treatment. It's in MyChart but that's the only reason I know about it. I'm assuming they'll just spring it on me tomorrow. I may say something snarky. Especially because the practice is filled with signs telling you to ignore MyChart notifications and that somebody will speak to you in person about all appointments!

    Meanwhile, I went up to my MO's office afterward this morning for my monthly Zoladex shot and the nurse was like, "Hi, gamzu, we have a shirt for you!" Huh? Turns out they got a giveaway bag with a chemo shirt earlier in the week, but the shirt was size XS. The nurses thought of me as the only patient who would both fit into that size and is known to come in that type of shirt, so they put it aside for when I came. So now I've got my original blue one and this new red one (which does indeed fit just fine).

    I'm sliding towards amused at this point. Being able to document the absurdities here helps. As long as the radiation happens the way it should (and I looked up the dosage and schedule they showed me last week and it clearly follows the latest research), all this stuff is just a sideshow. Bring on the BBQ.

  • kotchaj
    kotchaj Member Posts: 212
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    Gamzu710

    Bring on the BBQ, snort! Laughing at loud right now. Being able to talk about all of this here does help so very much! And I cannot wait to be able to look back on all of the stuff going on and laugh. Because I will, it's how I'm wired.

    You definitely have two separate experiences going on. I'm so glad at least one of them is pretty darn good. I was the last person in the clinic last night at my first rad appointment and they almost locked me in! Seriously, I came out of the dressing room, the lights were off and one nurse came and looked in the hallway where I was walking and was kind of like, "oh, I didn't know anyone was here." I do not want to have to spend the night in there, lol. But the two techs I have for my radiation are very nice and explain everything to me. I have noticed that my visits are not in Mychart. My initial consult is, but not my daily ones.

    Had my first rad yesterday. The table I lay on moves and so does the machine around me. It's a good thing I like carnival rides and don't get sick on them! I'm getting 5 more tattoos at today's appointment. I'm going to be covered with little blue freckles when this is done. I don't have any tattoos unless you count my microbladed eyebrows, but after this is all over and done I think I just may get an actual tattoo. Because, why not?

  • gamzu710
    gamzu710 Member Posts: 203
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    Glad you got the first one out of the way and the techs are good at explaining! Getting locked in and forgotten about would definitely win the "worst RO office customer service" award in a country mile.

  • gamzu710
    gamzu710 Member Posts: 203
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    The simulation for my boosts this morning had me lying on my side in an awkward position while they made some kind of molded cushion and did some scans. For the 2 minutes that the treatment takes it will be fine but for 15 minutes it was pretty uncomfortable. It seemed to be restricting my diaphragm somehow so I couldn't take deep breaths and my whole rib cage ached. But it was nice to finally be able to see what's going on!

    As predicted, they did spring this appointment on me with zero warning; the first time it was mentioned was by the techs after my treatment, telling me where to go to wait for it. I went back to the waiting area and my nurse asked me what I was there for(???!!!) and I went off on her a little bit, telling that nobody had told me about this appointment ahead of time or asked if the time was OK for me, that I do have a job and scheduling things without talking to me is not OK, and that I'm very unhappy with the communication I've been getting. She apologized a bunch of times and offered to reschedule it, but I was like whatever, just get it done. I'm sure it won't change anything but I feel better for having vented to someone and probably should have just complained earlier. I tend to seethe quietly for awhile and let it build until I blow up.