Winter 2015-16 RADS
Comments
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Thanks to all for your presence and encouragement at what can be such a scary time. Was just thinking yesterday that this year, New Year's Eve -- which isn't usually my favorite holiday -- has potential to be pretty good, starting a year I pray will be less frightening than 2015 and with a renewed sense of resilience and hope. I wish this for all here.
AND, I wish that -- via cyberspace, somehow -- you could taste my fruitcake...it is YUMMY!
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Love the elf idea! I may borrow it!!
I am finishing week two of six tomorrow, and just now finding this forum. The nurse told me that no one who has been through chemo finds radiation to be more difficult, and so far that has been the case for me. Thankfully.
Appreciate all the advice and encouragement!
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AmyQ, I'm having treatment to T11 and I think you did, too? RO warned me that it could affect my esophagus. I better check out the Magic Mouthwash. Glad you're finished and feeling better.
Girl53, I know most people hate fruitcake, but I love, love, love it!!
Mary, I'm always impressed at how many of us you manage to address in one post!
Here, here to a better 2016! I'm ready to drink to that!
My best to all, Barbara
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Girl53, send some my way! I hate the store made fruit cake but homeade is SO GOOD!
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Just had treatment 9 of 25 today. Things are going really well. No skin changes yet and my energy level is pretty good. I am tired in the early evening, so I have been just going to bed early. I did have a bit of irritation yesterday and I see it is from where my underwire bra rubs on the underside of my breast. I cushioned that area with some cotton gauze and put lots of extra aloe there this morning after my treatment.
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Rads has been VERY difficult on me physically but mostly emotionally. I had a panic attack after the 3rd treatment on Wed. but after meeting with the nurse and RO have some strategies to work through it daily as well as have decided to take .25 of Ativan prior to arriving at the office. Have done this the past 2 days and it has been better.
Wondering if I am the only one who has anxiety seeing and talking with the other rads patients- so many of them are SO sick and talk to me about it....am a retired counselor so maybe they sense this? Not sure as I am not looking for talk at the office for sure.
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mdoc524, Once you get those Santa presents wrapped, don't stress about anything else. I remember when my kids were younger, I always felt such a sense of relief when that was done. Luckily the elf on the shelf was not a thing then. LOL. My kids are 16, 17, 25, and 26 now. Only the two youngest are still at home, but we still play the "Santa" game",which means that I am not allowed to put any presents under the tree until after they have gone to bed on Christmas Eve, and they still leave cookies out. They better go to bed early this year, as I am starting radiation next Sunday. They are open on Sunday, because they will be closed Christmas Eve and Christmas Day. Enjoy your children. It's lovely when they still believe in magical things. Patty
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Love the magical thinking of children and parents on Christmas....enjoy it and conserve your energy by resting whenever possible!
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Welcome Welcome Peachy2 and glad Rads are going well for you so far - hope it stays that way! Glad you found us!!
Creativevintage- glad all well so far - hope it continues that way for you
HappyHammer - so sorry you are having so much anxiety .. personally I think the anxiety is that hardest part to deal with as it stays with us and have to find ways and outlets to manage it. Hope the Ativan and RO strategies work for you to get you thru treatment - hugs to you!
BJSMiller- HaHa .. I do try to connect with all in my posts as much as I can - helps me stay connected ..
PattyMeg - so true and I will always keep Santa alive for my kids as my Mom did for me - keeps Christmas magical. I will be sad though when they don't believe anymore - it is so much fun. Now about the Elf - we have had him now for 6 years and while so fun to see kids faces when he is up to his antics during the night - so hard for parents to remember to move him and do something silly with him. So often we have forgotten and they wake up asking why didn't he move - UGH .. won't miss him!
Happy Sunday All
Mary
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Hi everyone, dropping in from the Fall 2015 rads group to wish you well. I've had 18 of 25 treatments, 7 to go!
RFP268, I'm being treated at MSKCC. Have you started yet?
I think others on the fall group are doing a great job of educating everyone. I just wanted to speak up about the unexpected schedule changes. I was told in the beginning that it would take a week or so to settle into the schedule I'd asked for. The facility I'm with mostly runs on time--more or less--but there are glitches that I believe are unavoidable. One late patient can throw off a machine's schedule for the rest of the day. And when I arrived one morning last week, I was told that the machine I'm usually on had broken down; in fact, I saw it had been pulled completely to pieces. They fixed it in a day, but in the meantime, they were having to fit the patients who used that machine onto the schedules of other machines, and I ended up having the treatment nearly two hours late. Talk about frustrating--but there was absolutely nothing to be done. The techs were very apologetic and couldn't have been nicer. They did fix the machine, so the next day things were back to normal. Next week, there is one day when I know I'm scheduled an hour later than normal, because someone is doing a two hour simulation before me.
Needless to say, all of this is certainly influencing me to get there on time. The techs are very nice but they are pretty clear that they need to keep things on schedule. And not every patient can handle that (there's one poor woman with colon cancer who has to keep running to the rest room), so I try to do my part to not create delays.
Anyway, good luck to all! I hope it goes well.
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rain: I hear you that schedule changes are unavoidable; I get that. However, you seem to have been informed as to the *reasons* for schedule changes and delays... I have had two even just during the sim and initial starting phases, and in both cases they either wouldn't or couldn't tell me why: even though in one instance they called me at 5:15 pm to cancel an appointment scheduled at 8:30 the next morning! Under those circumstances, it would have been nice to at least gotten an apology for the inconvenience, if not a reason, but all I got was "we need to change the appointment"...not even an " we are sorry" . In the most recent instance, they did call on Thursday to change a Monday appointment, but no reason was given other than 'Doctor asked us to change it' (talk about crazy making, and I think it is fairly obvious that, while no one told me why I was being changed, it wasn't a machine breaking down if they were calling me on Thursday for a Monday change). Again, not even an acknowledgement of inconvenience when I pointed out that, given that it is a minimum of 40 minutes drive each way to my appointment, that changing an appointment from 4:45 pm on Monday to noon on Tuesday makes a huge difference in terms of whether I can work during rads. If they had just cancelled and kept my expected appointment at 4:45 pm Tuesday it wouldn't have been any big deal, but they told me that 'wasn't possible' without explaining why (I had been previously told that while my schedule would be finalized for the next few weeks at the Monday apt. that I could expect the appointments to all be late afternoon since that was my preference and the late afternoon time frame was their least popular....). I only missed a few days of work all during chemo, and already it appears that I am more likely to miss work during rads than during chemo, even though it is supposed to be easier physically.
Thanks for letting me rant about this. Frankly, when I mentioned it to the person who called me about the changes, she just didn't seem to understand. Seemed downright confused about the concept that it is hard to work FT and have last minute changes to a schedule..How could I possibly be the first person who has to work for a living during rads in this practice? If it happened again, I'd be tempted to switch ROs...but that is the other problem: they have you over a barrel in terms of service: once started, switching really isn't an option, especially meaning how much of a delay there would be to find another RO in my area where they are rare, get consultation apt, sim done, and all the rest, even assuming insurance would pay for another sim at this point.
Stuff happens. I totally get that. But the response to 'stuff' happening is what makes all the difference in terms of one's patience and one's confidence in the provider.
Edited to add: when I read this it sounds harsh. Maybe I am being a bit harsh. But damn it, no one ever even said they were sorry for the inconvenience, much less gave a reason for the changes. Sigh.
Octogirl
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Hey, Octo. I totally get it. It can be massively frustrating. Before the machine broke down, there were two days when they ran an hour or so late, and I had to just sit there. Sometimes they explain, as when the machine broke, and sometimes I just figure it out from what I see. And sometimes I haven't a clue. I'm fortunate to be self-employed and have been lugging my laptop everywhere. (Though since my shoulders are feeling the rads big time, I'm not sure that's going to be an option soon.) Of course they should call you! Of course they should honor your time with at least an explanation! I think the rads group has an our-way-or-the-highway attitude that probably works with about 90% of the patients. I have pushed back hard a couple of times (picture a cranky NY Jew saying, "I am walking out of here fully dressed at noon because I have a meeting in midtown and need to earn a living."), and to my surprise it has worked and all of a sudden everything is back on schedule. The head tech is a little bit of a bully, but she actually offered me a couple of options when I had an unavoidable work conflict. I've also been buttering up the receptionist like crazy. But the daily-ness of rads is just a huge time-suck, and it stinks for us control freaks.
I guess that during chemo, I was more resentful of the schedule changes; the MO's office tended to be rather incommunicado at times--like after my PET scan when I erroneously thought I had brain mets, for pete's sake!--so I seem to be rolling with the rads schedule. Or maybe it's just that the guy who does the scheduling is one of the sweetest cookies I've met on the cancer journey. Or maybe it's that I felt sick during chemo, so I was less patient.
It's easier once it's started....
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rain, I have never had schedule or appointment changes during chemo or in MOs office at all, or for that matter during surgery follow up even though I had wound healing issues and for a while there was seeing bs once a week. Of course, bs had the BEST STAFF EVER (seriously, even the hospital techs talked about her staff and how wonderful they were...)...so maybe I just got lucky until now? (sweet staff definitely make all the difference, don't they?).
Anyway, thanks for the post back. It does make me feel better to see the mental image of you as a cranky NY Jew pushing back: maybe I should channel that part of my inner heritage a bit more? :-)
I do have a lot of flexibility in my own schedule even though I am not self employed, and can lug a laptop and get a lot done: the problem is that if and until I know what the schedule is, I can't schedule any meetings without risk of all the hassle of trying to reschedule, and, unfortunately for this situation most of my work is done in teams with others (necessitating those meetings I then have to reschedule... :-( )
Hugs
Octogirl
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mdoc524. My niece struggles to find new spots for the elf each day. She uses this http://www.howdoesshe.com/25-genius-elf-on-the-she.... They have some pretty cute ideas.
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Please add me to this group. I will be starting 6 weeks of radiation on January 4.
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Radiation clinic here is ab.so.lutely wonderful....today, I arrived at the appointed time....only to find out i was 4 hours early. They worked me in to not have to come back. (PS- they gave me a print out of times/dates FOR THE 6 WEEKS OF TREATMENT LAST WEEK-and I was WRONG!) They never missed a beat....I had to wait for a bit but had taken my Ativan...they came and checked on me several times because they know I have had angst....but....nope, it worked out. This group in small town SC is FABULOUS!!! So very thankful. Just trying to figure out what to do for them as a thank you....and, whether to do it before or after the holidays....any ideas?
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HappyHammer, that is good news. I'm glad they were able to work it out for you. Maybe a nice holiday plant like a poinsettia. It's hard to buy a gift, when you don't know them that well. ( do they like wine? Chocolate? Etc.). I got a nice pre- rads gift from one of the Moms at my daughter's cheer gym. It's an aloe plant all dressed up for the holidays. Good luck with everything, Patty
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happyhammer - woo hoo for your great clinic! I'm glad things are going well for you so far..
Pattymeg - love the fancy aloe plant!
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Love the aloe plant! Such a thoughtful gift....
heading in today finally for what is supposed to be first session. But changed at Doc's request from yesterday, as I think I mentioned, so we will see, perhaps, why.....I didn't have a big day at work today so I decided to take the day off and maybe get a bit of shopping and eating done before or after. My grandson's third birthday is next week and he will be visiting, so need to order a cake and buy presents! DD says he is into 'Paws Patrol'. Of course, I had to google it, but now that I know what I am looking for, a visit to Target is in order....
Hope everyone has a good day today!
Hugs
Octogirl
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Mdoc, thanks for the welcome.
My sim is today and then rads start tomorrow. I met with a counselor yesterday who suggested I think of rads more positively as "positive healing rays flowing through my body" (the image and words I came up with) and that's helping a bit to reduce the anxiety.
I'm also working FT and I need to leave early to get the treatments at 3:15. The center says, "we'll work with your schedule" .... last appointment is 3:30pm (What??!!! I don't get why there aren't evening appointments) I get off at 3pm, so it's not too bad. Here's the snippy Chicago Jew coming out.
Looking forward to meet RO nurse today to find out about lotions and if they'll be open on Christmas and New Years and other questions. She specifically told me that I'll find out everything today and only answered 1 question last week about Tom's deoderant. I find that a little irritating, since I like to be prepared and don't want to spend more time shopping or running around to pick up lotions or other things I'll need.
I love the aloe plant gift idea. Years ago we had one, but with 4 cats now there's no way it would survive even 5 minutes in our house.
Wish everyone well and thanks for the support,
Linda
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Lindab: I haven't been told anything about preparation either. It seems like this big mystery. Unlike during chemo, where they sat me down and held my hand (so maybe I was crying a bit) right after telling me I needed it, and took lots of time to explain it all...very strange contrast. I haven't figured out why it is such a different climate in the ROs office but it would make for an interesting study some day....
Octogirl
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I had my sim yesterday, and I'll start next week. There's quite a bit about prep that I don't know yet either, and I kinda forgot to ask. I did get a sticker for parking (there's a spot for Rads patients, my clinic is in a busy downtown area), and some sort of card that I'm supposed to scan when I walk in for treatment. I was told they will give me Miaderm for my skin. I forgot to ask about deodorant.
I did get 2 tiny ink tattoo spots in each side of my trunk, and I guess I'll get another on my chest, but not till next week. I have other marks all over me that are covered with stickers and that are supposed to stay on.
I was worried going in mostly because of my range of motion. I've had PT, and I've come a long way, but my left arm (alnd side) just doesn't want to stretch out the same way it used to. Still, I'm able to get my arms above my head, and they were able to mold me the way they needed to.
So if I'm to get my left underarm area radiated... No hair should grow there for now, right?!? Trying to find a positive... Lol.
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Your experiences are making me really appreciate my RO and his office! They have a special pre-rads appointment to give you all the info - type of lotion, what to expect, statistics for my specific diagnosis, a video on exactly how rads work and what the machine looks like, etc. Both the doctor and the nurse take part. So my DH got to meet everyone too, answered all our questions and sent us home with a folder full of the same info in written form.
I have my sim scheduled for first week of Jan, so I haven't dealt with anything else yet. But I met a sister radling in the waiting room and she says they are on it to keep the rads schedule, never more than five minutes off the appt time, that they are aware it is a pain to come every day and they have a system worked out to keep everyone moving through.
Maybe they can franchise..
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Today was treatment #5, so nothing to report yet. So far, so good.
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I'm in- simulation this Friday and rads start sometime after Christmas, date TBD
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wow peabrain, that's awesome that your office does all that. Mine wasn't bad so I guess it falls in the middle of everyone. When I went to meet with my RO the appointment before my sim I didn't realize I was also going to be talking to the nurse that day. she gave me a folder with all the information about lotion, cleaning, deodorant, phone numbers to call, side effects, what to look for, when to call them, etc. Other than that, not much else was told to me! The nurses have been amazing though and I love them!
8 down...23 to go. I can see some slight tanning in my armpit area but it doesn't feel any different. Is this early to see a tan?
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amazing how different places are! My MO's office did the chemo education stuff but not much else. My RO's office gave handouts to prep and meet with nurse and have a social worker and nutritionist on staff and massages on Wednesdays. I could've used all that during chemo! Unfortunately it's hard to share about Lotions as it seems each RO has his/her own preferences. Mine is 100% aloe gel three times a day
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Hi all: first treatment today...it went well. I still didn't get much info about what to do and what not to do (no one has said ANYTHING about gels, or aloe or any such, so I figure I will just listen to what others recommend on this board unless i have problems...the techs did show me a board that they project my information on for each rad, and there is a place there where I am supposed to rate my pain level each day...ok...but what if I have itching?..)
But I am NOT complaining, because the RO gave me the great news that the Stanford radiation Board reviewed my sim stuff and models, and recommended that he go with the 16 day version, so he is! So happy! He did point out that if I do have problems he can always scale back, but I am hoping all will go well, in which case, 1 of 16 done! Woohoo!
They did give me my appointments for the next three days, and they are late in the day as I prefer. Easier to blend with my work schedule. Of course starting next week I am on vacation for two weeks. Heck of a way to spend one's holiday break, right?
Hugs to all
Octogirl
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Octogirl....glad you have started...it is a means to an end if nothing else, right? Am wondering about them asking about your pain...no one has said anything at my RO about pain and/or itching....am 7 down and 23 to go...but my breast does have a kind of dull ache today and the nipple area feels really "heavy"/tender...different....they put tape on the nipple right before the rads.. Meet with RO after treatment tomorrow and will ask him about this....
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good morning - after lots of patience and waiting, I now have my start date, being moved up from January start to tomorrow for my first treatment, ending in mid January (16 rounds+ 4 boosts). Looks like hubby will be helping out with Xmas dinner
Very grateful for all the good tips and support here. Running alongside Octogirl and noting Happy Hammer's notes...off we goWarm wishes to all of you, Deb
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