June 2020 radiation group
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wahoomama87... Welcome. That course of treatment sounds right. Everybody is different. Treatment ranges from 15 to 33 sessions, according to what I’ve read. Some women get boosts, some don’t. If you read through this June forum, you’ll learn about what to expect, etc. It’s normal to be nervous and afraid. This is a roller coaster we didn’t want to be on, but take it one day at a time. That’s what helped me. Also, if there is a bell in your hospital that you ring when you’re done, make that your goal, lol. All the best, you can do it
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grdngrl505... It seems to me that everyone struggles after they’re done... I have gotten a little itch too. Walking in the evening is helping me mentally and physically. I didn’t go for walks for a long time and now I have more energy so I’m starting with 15 minutes a day. Hope you feel better soon! Hugs
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I’ve got round 22/33 today. My skin is very red and a little itchy. I’m trying to not itch it, but it’s hard! My fatigue seems to be the worst on Mondays...it’s like I lower through radiation all week, then get the weekend off and my body starts to put in the recovery work leading me to be tired and then it’s back to the table (literally). I’m nervous for what my skin will look like when this is done since it seems like many on here have continued skin irritation after it’s over. I’m continuing to slather on the lotion..
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ajminn3...It is interesting that you are most tired on Mondays. For me it was always worse the more into the week it got. Like the radiation was slowly zapping my energy every day. Then I would rest and get a break over the weekend and Monday wasn't so bad. Hopefully your skin won't get too much worse. Mine didn't get a whole lot worse once I finished, just more red and itchy (oh the itching is bad sometimes!).
I am less fatigued now (1 week since last treatment). My skin continues to get darker under my arm and is red in some places and itchy. But I keep using the calendula cream several times a day. I am still pretty down though it seems to have plateaued a bit. I think part of that is I feel so alone. I am married and usually my husband is pretty good but he hasn't been with the cancer and I have learned that I just can't count on him. It breaks my heart. I have talked to him, told him what I need, begged him to please listen, and well, he doesn't. He claims he is doing all the right things but he isn't. At all. I finally just stopped trying to get his support and stopped trying to talk to him. We have been married over 30 years so I am shocked and disappointed that this is how he is being when I need him more than ever. Sorry for the rant...
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Hello friends,
I finished on Monday, 20 rounds, rang the bell-they allowed my 16 year old son in to video and watch as he was in the car(offered to go with me which was very sweet). Monday evening, my two daughters were scheduled to take me to dinner. Instead I was met by a surprise party at my son's house including our closest friends and their two daughters. Pink everywhere and my youngest made pink cupcakes. All five kids and my daughter's boyfriend had white shirts on that said various things like, "Hakuna ma tatas" "I'm just here for the boobs" "Save the rack(looked like a deer)" "Boob lives matter(my daughter's boyfriend is African American) "Protect second base"(my baseball player son) and "For t*ts and giggles" my eldest daughter wore. She made a delicious chicken pasta, salade, breadsticks and pink champagne and pink lemonade. I was toasted and received a banner "Survivor", roses and a certificate the kids made, also cards from all the kids. I am blessed, but getting more tired each day. Armpit is sore and angry looking but breast seems a little less pink?
It remains in the 90s here and I am petrified to go out in the sun for fear I'll severely burn, so busying myself in the house. There seems to be a limbo feeling in my heart-like now what? And I am tired of it being all things BC...
I am praying daily for us all and pray y'all are feeling ok, healing and enjoying your day. This group has been a gift to me during my treatment.
xx
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ajminn3... The day I finished radiation my skin started getting red and also dark (under the nipple and under the armpit). That was a week ago and somehow I think today it looks a little better (crossing my fingers). But everybody is different, so maybe your skin is looking bad now but won't get worse when you're done! Think possitive!
cm2020... I'm sorry you're not getting the support you need from your husband. I wonder if it's a guy thing and how they process difficult things. With my husband, he took me to RT every single day (I don't drive that far, don't laugh), he changed his schedule at work and got up really early and also worked on Saturdays to make up for those hours that he took off during the week. But he was in such a crabby mood every single day... I tried to understand him and thought it was all the tiredness and stress, but after I was done with RADS, he has continued being cranky! I'm getting tired of it. We bicker all the time now. Before RT, we were fine! He doesn't show any curiosity about seeing my breast, and I understand. In fact, I don't want him to see it. But it's his not asking anything about it that is so strange to me...
toria1212...Great photo! Congrats once again
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About sun protection
The other day I was going to be out in the sun (toria, I totally relate to being petrified) and instead of wearing a sunblock lotion, I wore my rash guard (the SPF30 shirts that you wear on top of your swimsuit). I hope they do what they claim they do! It was a little too hot but at least I didn't have to worry about applying the lotion.
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toria1212....Love the photo!!! You have a wonderful family.
callmegenie....It was so kind of your husband to take you to RT everyday. I am really sorry he is cranky and not checking in with you. That is very much how my husband is behaving....he doesn't ask me anything either...no check ins to see how I am doing or how my skin is...nothing at all. It is like the cancer never happened and I haven't been through hell. We have been bickering too. Well we were, now I just don't say anything. The other morning I just sat in the shower and cried. I don't want my daughter to hear me so crying the shower is my new thing. It is awful and I am so very sorry you are going through the same thing. How long have you been married? Maybe it is a guy a thing...I don't know. It hurts though. I thought about posting to see if anyone else's husband behaved this way but I am not sure where it would even go so I didn't.
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cm2020... I'm glad you posted as you should feel free to vent and also because maybe it's not just us... I'm sorry you have to cry in the shower... I'm not crying, at least not lately. We have been married 16 years. Did you ever watch Modern Family? There was this episode where Phil goes to a women's spa and they tell him that women don't always want solutions but just a hug and a "there there". So there are guy things... Maybe what we are experiencing is one of them... I may ask him later tonight. I will let you know how it goes... Hang in there! xo
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Thanks for the link to the radiation group! Lots to think about.
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cm2020... I asked my husband last night why he never asked me anything about the breast, the skin, etc. and he replied "because you never say anything about it... You have told me about your belly aches but nothing about the breast so I assumed everything was fine". I said I was waiting for him to ask. Anyway, it was just a silly misunderstanding. After that, he asked me about it and I told him about the skin, etc. So it was a good thing to ask him why!!!
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callmegenie...I am so happy it was just a misunderstanding and am glad you guys were able to talk and straighten it out.
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Does anyone else’s skin feel good in the morning and bad starting in the late afternoon? I think it is the swelling that is making me so much more sore later in the day.
I agree that guys need to “fix things”. I’ve had similar conversations with my husband who is super supportive. Although I drive myself to all my appointments due to Covid, he used to drive me to chemo. He has taken over almost ALL of the home duties from grocery shopping to cooking dinner to doing some light cleaning. I feel very supported, but I rarely talk about my symptoms because he immediately wants me to call a nurse, take a pill, or do something that I don’t feel is necessary. He gets angry because it hurts him when I am hurting and he feels powerless to help. I’ve told him that I don’t want a fix, I just want him to commiserate with me, but that hasn’t worked, so I’ve found a middle ground that works for us. It sounds like others are doing the same thing.
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cyathea...Yes. My breast is the same way. I have been wearing a sports bra almost 24/7 to help with the swelling. But even with that by the afternoon and evening I am sore and my skin seems to bother me more. You make a good point about guys wanting to fix things. I'm glad you and your husband were able to find a middle ground that works for you both.
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cyathea... I’m glad you and your husband have been able to find a middle ground.
About bras, I go braless most of the time, unless I have to go somewhere. I cannot stand wearing a bra.
My breast skin is still dark, but no darker than a week ago.
Does anybody know when we can know the amount of shrinkage that our breast will experience?
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cm2020 thank you for “validation” of my feelings. It has been such a long, long road for me. And I’m just tired I think. I finished #33 of 36 Treatments today. I’m using the Mepitel film so my skin didn’t start getting dark until the 28th Treatment. But I’m getting dark in areas not included in the “bolus” or extra treatments but are covered by Mepitel. Clear as mud, huh? Anyway, the end result is I can’t put any kind of cream or ointment on the areas that are hurting. I’m just miserable right now and want to complain.
To all who have stomach issues, I have had recurring diarrhea throughout the Treatments. And according to all the experts it’s not connected to any Treatment I’m undergoing. Best explanation is “stress” from everything going on. Works for me. I just live with it anyway. I’ve continued to take the Letrozole throughout the Radiation, but have to wait to start the Ibrance. Some concerns about the need for “bolus” Treatments, but almost through anyway.
Good thoughts going out to all! And hoping for a great weekend for everyone
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mac5... I’m sorry this is being so difficult, but you’re only three treatments away! When you say bolus, do you mean the boosts? I have come to the conclusion that ROs don’t tell us the truth. Mine told me belly aches were not related to RT, but of course they were. They went away one week after I finished my treatments. Hang in there, is there a bell you’re going to ring?
cm2020... How are you mentally? Did you talk to your DH? Are you still crying in the shower? Prayers and hugs
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mac5...Please feel free to complain as much as you need to! Going through treatment stinks and you are among friends who truly get it. My skin is still getting darker and I finished over a week ago. It seems like each morning it is a bit darker in areas. My darkest areas are not even where I got the boosts, go figure. Just think, this time next week you will done! I know it seems like forever away at this point though. Lots of gentle hugs.
callmegenie...You are very sweet to check in with me. Mentally I am better, no more crying in the shower. Oh I have talked, cried, pleaded, and begged my husband to truly listen to me and have expressed my feelings and how he has pretty much ignored cancer and all my treatments. He doesn't get it. He thinks he has done a great job and asks about me all the time. Newsflash: he doesn't and hasn't. I gave up and don't bring it up anymore. At this point I have done all I can do and don't expect any emotional support from him at all. Maybe at some point he will realize he is wrong but I can't beg him anymore. All I can do is take care of myself. Thank you for asking. I wish I had a better update. This is just so out of character for him.
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cm2020...yes the bolus treatments are boosters that target the mastectomy scar. Puzzles me because I had skin sparing mastectomy and the problem margin was on the chest wall, not the breast skin. Haven’t really gotten a good answer about that. Even after asking point blank.
Just a word, treat yourself like you would treat the one you love. LOVE YOURSELF! Dh May never do what you need so do as much as possible for you
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cm2020... I’m glad you’re taking care of yourself. The fact that his behavior towards your cancer is so out of character makes me think that maybe this is too difficult for him. I don’t know what else to think or say, except keep taking care of yourself and maybe ask your local cancer organization if they have mental health counselors. Mine does and they do free virtual appointments. I was referred by the nurse navigator and I had four sessions because my anxiety was high a few weeks ago. Hugs and enjoy the weekend.
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Question for everyone
Did you get a printed schedule on the first day of your radiation treatment? Did your schedule show all the dates, including the boosts? Or did they add the boosts days later
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callmegenie, I received a calendar marking all my appointments after they did my simulation session. At the time, I didn’t know about boosts and just assumed that all the treatments were the same.
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callmegenie.....You know I think you might be right about this being too difficult for my husband. I am an RN and most of my nursing practice was spent working in peds oncology. He saw the very worst of what cancer does and probably expects that is what is going to happen to me (i pray it doesn't). Thank you for suggesting this as a possibility and for the support.
To answer your question...yes...I got a calendar with all my treatments on it. It did include the boosts though it wasn't labeled that they were boosts.
mac5...Thank you for the support and encouragement.
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cyathea and cm2020... Thank you for your answer about the schedule... I’m going to wait to see if somebody else replies and then I’ll tell you something that is bothering me about this subject.
cm2020... I’m no psychologist, but every time there is a change in behavior (or somebody acting out of character) that is a red flag to me or something that needs to be investigated. In your DH’s case he may need to talk to somebody more than you do! Guys don’t like counselors, but maybe if a family member, pastor or friend emailed him or called him to check on him? Make sure you’re not around if they call... I did that when I was going to have surgery. I asked my DH’s family to check on him and they did.
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callmegenie....I am very interested in what is bothering you about the calendar for radiation. Thank you for the suggestion of having someone talk to my husband. That is a good idea.
How is everyone doing? I am starting to be a lot less sore and fatigued. My skin isn't any darker and is healing.
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Hello friends,
I am hoping everyone has had a restful weekend, and that your week with treatment goes smoothly. For those of us finished, I feel detached a bit from all things bc lately as we had a mental health crisis(episode) with my 25 year old son late Thursday night. My oldest daughter is a therapist so she came over at midnight and spent the night. My anxiety was so high I could hardly function. We were up most of the night. I believe the incident was related to my son's therapy session the day before(and always relating to his piece of sh*t father and new wife) It was not medication related but we did not know that for about 12 hours. Exhaustion, much prayer and also wondering what the h*ll I ever did to deserve all of this?! So my focus has been on him, my youngest two went to their father's for the weekend so the energy of the house settled down and it seems that now we are all ok.
I am broken inside from my son's mental health struggles. He has never used drugs nor alcohol, but he is a big guy, has been non-violent towards us to date, but there have been times when he has busted up his room and it has sounded like all h*ll was breaking loose. He has been hospitalized multiple times when younger but those short stays are ineffective and traumatizing. It is a lifestyle that like breast cancer, people who haven't been 'in it' have no idea the terror and distress it brings to a household and a family.
So, I have 'cheated' all week, wine, sugar, eating whatever I want although post radiation, my appetite has waned. I am seeing a new oncologist tomorrow, and my integrative this week as well, AND the nutritionist. So back on track soon, hopefully beginning supplements and getting back on the wellness train.
I am sorry for those of you who have struggles with your partner. I broke up wtih my longterm partner two weeks ago. We have seen each other twice since but breast cancer has confirmed to me that you get one life, and I have been waiting and waiting and waiting on my partner to step up and provide what he promised he wanted as much as I did(sell home, live together, prepare for marriage, integrate his daughter more into our lives). He was kind and attentive during my discovery through treatment, but I felt at times he was aloof about what I was really going through. Maybe it was his own fears about losing me(he has anyway) or some lack of empathy-I don't know. But I imagine having struggles with husbands during this is something you absolutely don't need nor deserve. At times I feel so alone in my thoughts and fears about my health future....
My breast is DEFINITELY less pink and my armpit is healing too(a little bit itchy). I have found a few tops I can wear braless and frankly I don't care anymore lol. If someone wants to see an old lady's hoo haws flopping around, well I just don't care lol. I only creme my breasts morning and night-calendula, vitamin E and aloe and let it air for awhile. I am thankful that it has improved.
I think of you all daily, and I pray for us. This is still 'too much' for me at times, and I still cry most days at least once. Sending (((hugs))) and love to my pink sisters xx PS Sorry so long today....
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callmegenie, I got my schedules weekly, so on a friday I would get my schedule for the following week, and so on.
Toria I am sorry to hear about your son's mental health issues. We have mental health issues in my family as well and its a lot to deal with.
My pain which hadn't improved in the 2 weeks post radiation is finally starting to dissipate in the 3rd week out, which is a relief. My armpit has healed. Only real ongoing issue is the dead skin peeling off around my nipple. Half of it peeled off leaving sensitive pink skin exposed and the rest is brown dead skin that hasn't fallen off yet.
I finally found a low armpit comfy bra with no underwires to dig into sensitive underboob--the fabric is buttery soft and the seams are all flatlock so they don't rub: https://trueandco.com/product/bras/bralette/true-body-triangle-convertible-strap-bra/black
I ordered several and will be wearing them exclusively until i am fully healed.
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callmegenie, one of the RTs gave me a schedule for all of my treatments. I also got an individual notification in MyChart for each appt. I didn't have any boosts. My appts were initially in the afternoon, but then switched to mornings at my request. The tech highlighted the first morning appt and I also received a reminder the day before I moved to morning appts from another tech. I got an email every day reminding me that I had an appt and a text to check MyChart. My RO told me at the outset that I wouldn't be getting any boosts.
toria1212, I hope your son is doing better. I wish there was mental health parity with physical health and it wasn't so stigmatized. Keeping you and your son in my thoughts.
BCat40, let us know how your bras work out. I was wearing the following, but they started to rub up against my skin too much near my mastectomy scar and I had to stop.
https://www.onehanesplace.com/bali-comfort-revolut...
My skin is peeling around my nipple, too. I had a nipple sparing mastectomy so I don't have a lot feeling in my left breast. I can feel that my irradiated breast is still a lot warmer than the other one. My PT noticed, too when she was doing lymph drainage. I also have some peeling around my breast crease. I tried using the mepllex sheets that the onco nurse gave me, but they just made me itchy. They have silver in them that's supposed to help the healing process.
I got some some button down shirts that have sun protection that I've been wearing. I hope they work. I also got some extra large t-shirts that don't touch my skin too much. My skin is feeling much better today than it was last week.
Hope everyone has a good week!
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toria1212, you have had a lot of difficult, stressful things in recent weeks. I’m sorry you are going through this. It is incredibly hard to see a loved one go through mental anguish when they are not their normal selves, but it is even harder to be in a situation where you fear that they may harm you or themselves when they are angry. I’m praying for you and your family. I do hope that you and your son can get help from a doctor or therapist who is skilled in this situation. (It sounds like your son’s current therapist may have made things worse rather than better.)
We are here for you, sister. Let it all out. I was listening to sessions from the Living Beyond Breast Cancer conference (lbbc.org) this weekend. There is a session with Yael Flusberg who leads the group in breathing, movement and writing. I found it to be very useful. She said that crying is actually good for the body physiologically. When our body shakes when we cry, it provides emotional and physical release.
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