Starting Radiation August 2021 - Anyone else?
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Tinkerbell65: Cancelling work on Tuesday and going to celebrate - sounds SO wonderful and like SUCH a good idea! Put yourself first for sure. Whatever that looks like. Your job is so meaningful and important, but also, requires so much focus and emotional output - I'm glad to know you are thinking of being kinder to yourself.
Please come here and tell us when you're done so we can all be happy with and for you.
Ivy, too!
Cheryl's cookies? What are those? Are they local where you are? (where are you? LOL) Is it sort of like a Mrs. Field's cookies thing? Halloween themed cookies - that is SO nice and individually wrapped makes sense. You are so thoughtful.
I love all of these ideas for our radiation staff people.
This is a big week for our group - I'm thinking of you all with love.
Jen
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Tinkerbell - I'm a day ahead of you. So happy you only have two left.
Definitely go celebrate! If you take off of work, will you do anything fun to commemorate the occasion? I wish I could, but Ive been so sick today and have a feeling this will be going on until next week or so. I'm so weak. I said earlier in the October thread that I felt like I had a hangover, but it has progressed throughout the day and now feels more flu-like. I feel like I did when I was having chemo. I know it's temporary so I'm trying to stay positive in knowing that this too shall pass.
Cheryl's cookies are good! What a great idea! If I felt better I would've baked something. I ordered bagels and cream cheese and will pick them up curbside on my way Monday morning. Last night I figured I'd better put an order in. If yesterday was an indication of how I'll be feeling on Monday there's no way my brain will allow me to go in and try to pick out how many of which kind, lol.
Thanks Jen! Tinkerbell and I are the last the group!
Happy Saturday night!
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Ivy - thinking of you today! Today is your last treatment, yes? Can't wait to hear from you so we can all celebrate you! Much love.
Jen
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DONE!!! So happy to be finished. It was emotional getting off the table. I prayed the whole time in there; for me, for you all and those who are having to go through any type of radiation. I overheard one of the techs say quietly to not ask me if I wanted to ring the best; she recalled me having told her at the beginning that it wasn't something I wanted to do. The staff all did come and congratulate me and wished me well. Oh, and thank me for the bagels and cream cheese. Met with the RO and he's happy with having been able to reach the areas he wanted. Skin is exactly what he expected, so no surprises there. Now to start to heal from this emotionally and hopefully begin to heal physically soon.
Thanks for staying with me through this. I hope you all will check in once in a while.
Tinkerbell - you're up!
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IVY!!!! HIP HIP HOOORAYYY!Y!Y!!!!!!!!!! I am filled with relief for you! And love! Yummy bagels and cream cheese - that's my fave LOLOL! I'm glad they remembered about the bell thing. THat's so thoughtful of them. This is a very very very ouchy time on lots of levels (as I would say to my kiddos LOL), so go easy on yourself, and just know we're all out here thinking of you and holding you in our hearts. I know I speak for everyone here when I say:YYAYYYYYYYYY!!!!!!!!!!!!! YAY!!!!!!!!
And Tinkerbell - one more day!!!! Please let us know when you're done too!
Sending love to all of the wonderful women in this group. I've been so blessed/lucky/honored to find you all - even though it's for a very yukki reason LOL. Please, everyone, check in every now and then to update us on how you're doing, what you're thinking, and if you need support/love, we're all here any time. I am sure of that.
Jen
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Serendipity: Congrats on finishing rads! That is wonderful. All the best in all of your healing!!
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Thank you Jen!! YAY is right!
Thank you swimgal, I appreciate it!
Did you get your answer to the question you posted about the prone position? Maybe I should be asking you that question on the other thread.
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MaineJen - Thank you - I rescheduled my appointments so I cam taking tomorrow off. I planned on doing something outdoors - like my husband and I taking the dog to the forest preserve for a hike. But the weather is not going to cooperate. So - maybe lunch at a restaurant - with a cocktail, or wine. We don't go out to eat very often any more, due to COVID. But maybe make an exception if I'm up to it. Then maybe a movie (probably Netflix)
Cheryl's cookies - an online site that makes pretty decorated cookies for all occasions. they are nice for a gift. They partner with a group of other mail-order companies - wolfermans, Harry & David, a flower company - and if you pay for a "passport" you get free shipping for a year for all the companies. I did that this year only because I had to send a gift, and it seemed like it was worth it because I have a bunch of people I sent birthday gifts to throughout the year. When the shipping is free, I tend to order more often. I got them for the techs because you can get a box, and each cookie is in a plastic sleeve.
https://www.cheryls.com/halloween-gifts
Serendipity - congrats on finishing radiation! I hope all the side effects diminish now. I understand the reasons for radiation, but the experience is something else. Lying on a table, my mangled breast-without-a-nipple exposed, having people chat with me as they position me, check my rash. You certainly lose all sense of modesty. The center I go to, there are realistic fake windows on the ceiling, so while you have the treatment, you look up at a blue sky with flowered branches. It does help, as does taking slow deep breaths.
I am half Irish, so very light skinned. the rash keeps getting worse, I put hydrocortisone cream on three times a day, but at this point the cream stings, because my skin is so raw. I am looking forward to putting this behind me so my skin can heal.
What I am really looking forward to is fewer medical appointments. SInce my diagnosis in July, I have been to a multitude of doctors. MRI, ultrasound, heart ultrasound, surgeons - multiple appointments each week. I know I will still have followup visits, but I look forward to having it a smaller part of my life.
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Tinkerbell - being out in nature sounds so relaxing. Whatever you do, I hope you enjoy it to the fullest. I'm hoping to be able to go to dinner to celebrate tomorrow, assuming I feel better. Hoping that now this is done, I can relax and not be so stressed so I'm able to go out to dinner tomorrow.
Modesty?! Ha, what is that? I don't think twice about getting undressed from the waist up at appointments anymore. They're not mine, they don't look like mine, it's kind of funny!
My burn too seems to get worse, they gave me a bunch of patches that have vaseline or aquaphor on it and some compression patches to put over them to keep them in place, along with a super soft "mesh" surgical bra that won't irritate the burns or the raw patches under my breast. I hope yours heal quickly.
You'll be in my thoughts tomorrow.
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How are you doing today, Ivy? Thinking of you.
Also: Tinkerbell - thanks for the info on Cheryls. Sounds awesome! And I'm so glad you're considering getting out and about with your husband today. Whether it is outdoors on a lovely day or lunch at a restaurant (we haven't gone anywhere due to covid, too, so I get it) - it Sounds lovely. I'm so happy you're doing that for yourself - if you're able/up for it. Maybe you aren't up for it and you're staying home and watching a movie or just resting? Whatever is happening for you today, good for you for taking today off. Is your last appointment tomorrow?
And I'm so sad your skin hurts so much. This is really awful, isn't it. I'm not even that light skinned - I tan super easily - and I was burned to a crisp. And I mean - 2nd degree, serious painful burns. This radiation thing - it's not easy on anyone. I'm so sorry you're hurting.
I cannot wait for this part to be over for all of us.Also: I'm with you on looking Forward to fewer doc appointments. OMG it is overwhelming to go in daily for radiation, and also to have - what seems like endless MRIs, CT scans, infusions, meetings with surgeons, ultra sounds, and on and on. Today I visited with my oncologist about my next steps (surgery then hormone meds) and they took blood and I was like "really? MORE blood?!" LOL. I mean, really!
And when I think back to the first time my oncologist asked me to show him my breast after surgery - and how I felt "sheesh, why do I have to show this to people?" I just cringe. I had no idea what was ahead of me and how I'd get used to being half naked in front of so many people all of the time. Now I'm like "what? You don't want or need to look at my boob?" LOLOL It's really awful to be subjected to so much medical intervention. And you do lose all sense of modesty along the way, don't you. I did.
Anyway, sending you warm thoughts and hoping your day is ok- considering the pain you're in.
Jen
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Jen - you received 2nd degree burns from rads?! That's awful! And painful!
I am struggling with my underarm today, The skin is very dark and there's a patch that peeled, and it's raw, it looks really bad. My techs were keeping an eye on it and it must not have been something out of the ordinary.
Tinkerbell - you're done!! WOOHHOO! I hope you were/are able to go out for your hike or dinner. I wasn't up to doing going to dinner so, I'll just save it for when I'm feeling up to it.
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Tinkerbell - are you finished? Please share how you're doing with the group? We hope you're done - woohoooooo!
And Ivy: yeah - ugh - the under-side of my breast was blistering, and raw and just - well - awful - for a while. And, like you, they took a look and didn't act like anything unusual was happening...they just said to put a t-shirt cut out under there before I put on clothes. I was like, really??!?! Holy crap! This is in the range of normal? The nurse didn't flinch and just said "yup." So, I guess it's normal to have burns and painful skin reactions and even blistering and rawness in various spots.
I hope you're not suffering too much today. Regardless, I send healing thoughts your way. This stuff is rough!0 -
Hi Jen! - A t-shirt cut out?! Ok, guess I'll be doing that shortly. My underarm looks bad, I was scared. My skin is just coming off in areas. It's so gross. I had a difficult time in bed last night. I had to sleep with a small pillow in between my surgical bra and skin to avoid the bra or anything else touching my skin. It was a rough night. I have the vaseline patches on and bought some aquaphor spray and it feels better, but I def do not like the greasiness. Feeling less fatigued today, thank God!
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Thank you great information! I will look for the October thread.
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Ivy: definitely try the t-shirt cut out thing. I lather on aloe vera (Celor) very gently all over my under arm, neck, boob and underneath my boob. Then I let it dry just for a bit. Then I take a cut out of a clean t shirt - like a giant square. I place it gently under my boob and fold it over my boob. Then a bra. If you need to use the same concept for your underarm, I'd do it. I think the idea is to protect the raw, blistering skin from any friction when moving around, from clothing, bras, etc. OMG it's so awful, I'm so sorry you're enduring this misery too. If it's any consolation, tomorrow makes it 3 weeks since my last treatment, and although I'm still doing everything (the aloe 3 times/day and aquifor at bedtime - and I sleep with a light camisole and I've ruined many camisoles with the greasy gross aquifor - and bed sheets - and pillow cases - LOL - but it's all just now starting to feel less intense, and I'm peeling and anyway, around the end of week #2 post-treatment, I could tell things started to heal rather than scream at me. It still hurts. I cannot lie. I accidentally bumped my boob with the door as I entered the waiting room for my appointment with my oncologist yesterday and thought "well, yup! It is still REALLY hurting" LOL. OWWWW. Anyway, that said, it does slowly improve. But sadly, it takes time and so be patient and go easy on yourself. LOADS of love.
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Wow - we really are all going through the same thing, aren't we?
I finished radiation tuesday, told my husband he was taking me out to lunch. I never thought about the fact that the White Sox were having some important playoff game, but he was a good sport about it. (Listened to the game on the car radio, left his phone open for updates during lunch). I have to remember that if I want his full attention, I have to schedule it around the Sox And the Bears. And the Blackhawks. (lucky for me he hates basketball, or it would be year-round)
Anyway, we had a lovely lunch, with cocktails at a Coopers Hawk restaurant. Illinois has a strict mask policy that is followed around here, so, masks on until you get your food and drinks, and the restaurant had people spaced away from each other. I feel much better having a weekday lunch, instead of a Saturday night dinner. We went home and relaxed - (and watched the rest of the game). Overall, I feel like I have my mornings back. Even though the hospital is close, and they are very efficient about getting me in and out in a timely manner, it takes up time. shower, drive, get radiation, then back home to put deodorant and lotion on, rest a bit, then work on the days I work. Now I can take my time in the morning. I saw the doctor, he gave me some other cream for the rash, another steroid that seems to work better so far. The bad rash isn't even on my breasts, it's on my upper chest - rough, scaly, bright red.
At this point, having sore breasts seems to be a way of life for me. It's hard to get comfortable at night, and I need melatonin to get a good night's rest.
Next step - I'm supposed to wait a week, then start on letrozole, which has a ton of fun side effects, I'm told.
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Jen - thanks for the tips, going to try it tonight.
Tinkerbell - So happy you were able to go out to eat, I love Coopers Hawk!
I'm a side sleeper, specifically my right side; naturally that's my bad side, so night time has been a challenge for me for almost a week now. I use a king size pillow and it helps once I can into the right position.
I see the MO on Tuesday and she's going to want to start Xeloda, I'm hoping she'll hold off a couple weeks until I heal a bit. I thought she told me last year that Xeloda impedes healing.
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Tinkerbell: Congratulations on being done with radiation! YAYYYYY!!!!! and "having sore breasts seems to be a way of life for me..." OMG! This. Yes. THIS. Thank you for articulating this! That resonates for me - a lot. It's hard to get comfortable at night for sure. I said to my husband the other night that getting comfortable means different things each night now - so who knows what it'll look like in a week, two weeks, two months, two years LOL.
And I don't know the names of all of the meds - but I know I'm going to be starting one soon too (cannot think of the name right now and I don't know if the meds you both list are the same types of thing or variations on one thing or totally different). I start it the day after my next surgery at the end of this month. And yes, I've heard about side effects. Oyyyyyy.
Well, Tinkerbell and Ivy: I hope you both find some way to get at least some rest tonight. I'll try too.
At least we're all done now with this radiation thing. And by "all done" I mean we're all done getting zapped. Doesn't mean it's healed or even close to all better yet.
Love to all!
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I have my first radiation today at 5 PST. This is what was suggested by a friend and I will start today. After treatment apply a mixture of candula cream and hydrogel (3x a day) and then just avocado oil at night. Each application takes a while to soak into the skin. My RO office suggested Jason's vitamin E oil (5000 IU) and also aquaphor. I will change to their suggestion if first doesn't work. My friend is on her 17th treatment today and so far no burns. I am back at the acupuncture doctor to help me through radiation. She has also suggested a supplement to help boost immune system. The name is astragalus max v. I started both acupuncture and the supplement on Tuesday.
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MimiArmani: I wish you all the best as you go through this radiation experience. I hope so much that your plan helps you avoid bad pain and burns. Keep us posted and we'll be holding you in our hearts!
Jen
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Congratulations, Ivy and Tinkerbell on being DONE and outta there!! I"m glad you made it through but my heart hurts that you are having skin issues. I guess we all do to some extent. You would think in this day and age they would have invented a cream that soaks in and helps the skin speed up recovery. I tried melatonin cream after seeing a study on it, and even kept it in the refrigerator before applying it - but I couldn't see that it was doing a thing for the skin and I was told that we shouldn't have anything hot OR cold to our skin during rads. Anyway, it didn't seem to work for me so I stuck with calendula. I am just about to switch to the Bio Oil. The RO said to wait until a month after radiation, for the skin to heal before switching to it.
Tinkerbell, I love that you went to the Coopers Hawk for a celebratory Lunch. Just eating out feels like such a treat these days, and you had something really special to celebrate, an end to the radiation chapter, and no more commutes. You gals are so creative with your gifts for the techs, and you remembered to bring them on the last day. I still cannot believe that I forgot. I saw it today and gee the Trader Joes jalapeno beef jerky sticks looked really good, but I have it all wrapped up with a pretty bow, so I am NOT breaking in to eat any of the snackies I put together for the rad techs, no matter how tempting! Maybe that's a secret to dieting.. wrap it up and put a bow on it.
Ivy, I hope your MO can safely delay the Xeloda a bit so you can start healing first. Jen, maybe yours will advise the same. Especially since you have been on the tough train from chemo right up until radiation and now you're just pulling into the station and they want to send you straight off to the next treatment without stopping. Jen, when is your next surgery? How can I (we) support you as you go through this next step? Are you feeling peace about where you are in the process or are you perhaps like me, and you haven't let yourself think about it yet until it gets closer?
About taking a break, if that's possible... I felt like it was so important to detox. I got that from my sweet integrative doctor. She has me eating Juice Plus which is powdered fruit and veggies (I was not getting enough in my diet), systemic (proteolytic) enzymes to soften up the scar tissue (inside and out), several vitamins (C, D, zinc, iodine, etc). and a very good probiotic called Probiotic 225 from Ortho Molecular. It's just a powder and you can mix it with any beverage. I think it's the most powerful probiotic out there to strengthen your gut which I think is 85% of the immune system. I am convinced this is all working, because I feel really good, not like before my diagnosis. I did not feel good at all, nor was my gut happy. I noticed that my immune system was struggling. But I haven't felt like that since she started me on these vitamins and Juice Plus so I have a feeling it's all working. The only thing I am NOT getting is r-e-s-t ..... we just finished our termite tenting so the circus tents came down today and it was safe to go back in. Moving our things back and forth to live somewhere else this week felt literally like moving out of that house. I missed being here with you on the boards this past week due to all of the bug hubbub, but I was thinking of you all and hoping you are healing.
Much love-
Esther
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Esther - thank you! Thee last few days have not been easy. The fatigue is getting better, but the skin...my goodness, it feels like it's on fire. There's patch on my chest that is not happy along with under my breast, WOW, does that hurt with every move I make, especially at night. I woke up with a small blister on my breast, going to do my best to make sure it stays intact. I was told to report any blisters; the RO's nurse said that it's normal being that I'm only four days out. I was concerned about my underarm as it seems to be wet, but she explained that because I'm peeling it's the natural moisture that the skin produces. I've been doing aquaphor during the day and covering that up with the pads they gave and than the burn cream with calendula at night. I bought the Bio oil yesterday and will wait until I'm a month out as well.
That's great that the tents are down, I'm sure it had to be stressful.
Mimi - hope everything went well at your first session today!
Jen, please keep us posted on when your surgery is.
I'm praying that the MO will delay the Xeloda. I honestly don't think my body can handle it.
Have a good Friday!
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Oh Ivy, I'm praying for you as your skin heals. I have been so frustrated with my internet being down for the past hour and being locked out of my router as well, and then I realized, I didn't even think to pray about it, so I sat down and did, and then my mind went to you and how much you are going through so I am lifting you up today... holding you in my heart, as our sweet Jenn says. It is awful to not be able to find a comfortable position that relieves the pain, especially when it messes with our sleep! Did your RO mention any dietary things we can eat to speed the skin healing process? In addition to drinking lots of water, that is. Someone said to eat lots of protein but I can't remember if that was during or after radiation. I also am wondering about collagen. They have that in powders, powdered creamers, etc. I wish all of this information was in one place for us as we go through radiation and its aftermath. Keep checking in please so we know how you are doing.
Love you,
Esther
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Thanks Esther! It really has been an experience like no other. I don't wish it on anybody. My surgeries and, as of recent, I dare to say that even chemo was a bit more doable than this, with the exception of losing my hair (I don't want to go through that again). I don't say this to scare anyone new that comes and reads this post as everyone is different, but I seemed to struggle with rads right from the beginning and it was all being tolerated somewhat until the last week.
Like you, I find myself having to step back and pray on things, otherwise I get so frustrated and anxious.
The RO has not mentioned any dietary changes, I'm trying to eat clean, more fruits and veggies and lean proteins and of course lots of water. I find that I feel better when I do all this. When I slip I start to feel sluggish and heavy. Having all the info in place would be great. You have been a wealth of knowledge for me throughout all this, so thank you!
Love to you,
Ivy
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Thank you all for sharing your experiences. Congratulations to you lovelies that have finished. First radiation went fine. My neck did get a bit cranky having to hold to the right for so long. Second radiation is done today as well and I had to get a 4th tattoo spot today. I'm not sure when the burning starts, but two sessions in and nothing yet.
Ivy and Serendipity sending healing thoughts for your skin! Jen hoping your surgery goes well. Jen - yes - all done - I like your comment. Feels like we are far from being done - like a monkey is always on our back. I hope in time it doesn't feel so raw.
Hope everyone has a restful weekend.
Mimi
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Mimi - I'm so glad you're on your way. I tried to think of it this way: each one behind me was one step closer to the end.
My surgery is Oct 29th. I'll be glad when it's done. Keep us in the loop about how you'er doing Mimi. Ivy: so sad you're hurting so much. This sucks so much.
Esther: So glad the termite tenting thing is done. Perhaps once you move back in you'll have a chance to rest a bit? Maybe. I certainly know you've earned the break! You've been on the move omg! Also: glad to know that your dietary adjustments are helping you feel better. I say whatever we can all do to give ourselves an edge in terms of feeling even a tiny bit better/happier/rested/whatever. If eating a certain diet brings that peace and physical wellness, excellent. If eating a few favorite candy bars or bags or Doritos is fun and soothing, so be it. Going out for a hike with a loved one. Listening to a podcast of any sort. Listening to bird songs or crickets on the sound machine. Whatever it takes, ladies. We're in a very, very VERY challenging, painful (on many levels), grueling experience - and so as I see it - whatever we can do to show ourselves a tiny bit of love and kindness along the way. I'm all for it.
Love you all.
Jen
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Yesterday, I had an itch in my armpit. I scratched, and felt something, residue, stuff, on my fingers. I thought it might be from lotion, deodorant, some substance that was irritating my skin. This morning I looked in the mirror (I can no longer bend my neck to see my armpit, due to a previous neck issue) My skin is peeling off in my armpit! Weird - the radiation was directed at breast tissue, not lymph nodes, but the peeling skin is only in that one spot.
It's not terrible, just a nuisance, but I thought I'd mention it for all you ladies having radiation on what can happen afterwards. I still have a raised rash on my upper chest, but the armpit thing is new. (starting 3 days after last treatment)
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Tinkerbell - I had rads on my lymph nodes. On the day of my last tx my underarm skin was super dark, looked as if dye from a t-shirt had rubbed off. I figured it was from rads. Next morning, like you, I had that residue and when I looked I had a patch of skin that had peeled. Everyday it's bigger. I have this bright pink patch of new skin surrounded by dark skin that's ready to fall off; kind of gross, lol. Luckily, I don't have feeling in the area, as I'm sure it would be hurting. So just itchy for you, no burning?
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Ivy and Tinkerbell, I am so sorry about the itching and peeling on the way to healing. I'm glad though that we can comfort each other with our personal experiences about it. My RO did mention that could happen. I hope it is not too painful and that your new skin grows and heals underneath it really fast. I finally took my first very warm shower this past week. I think I mentioned that I only took one lukewarm shower per week throughout radiation and sponge bathed instead to protect my skin and keep the oils in it. It feels SO good to finally take a normal shower and not have to constantly shield the breast from the direct water stream.
Mimi, we'll be thinking of you on Monday as you head in for session # 3 and cheering you on as you get each day behind you and one day closer to being done. Some of us burned right away and some never burned or peeled at all other than sporting a deep red tan. Everyone's body will react differently. I hope your commute isn't too bad. I drew a big pink X on every day of my wall calendar so I could see daily progress.
Jen, I love you for reminding us to be kind and loving to ourselves as well as everyone else around us. xoxoxox I am having a little cup of tea and a quiet moment which I'm trying to do more of these days. It's nice to finally relax now that the buggies are gone.
I hope you're all having a good rads-free weekend. Never appreciated weekends more than during radiation!
Love,
Esther
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Ivy, you have been through SOOOO much and you always take time to think of everyone else and love and support us and how we are doing. I am praying for you and thinking of you tonight, that you will heal and find relief from the awful pain - that the blisters will go away and heal- that you will find a comfortable position to sleep in so you can get some real rest. When we're in pain it takes so much extra out of us. You are indelibly in my heart and I care very much, thinking of you every day as you go through this.
Much love,
Esther
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