Anyone getting ready to start Radiation in Fall 2016?
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summerbum I totally get what you are saying. It is so much easier to say I am doing great then to go through how you really feel. My dx was in July. It was easy to figure those who asked me how I was doing and really meant it. I think finding a group is a great. It will be a safe place to share feelings. Hang in there.
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I keep thinking I will look for a cancer support group. I'm thankful to have the forum here, but people's reactions IRL have surprised me.
My daughter avoids me almost completely, though she spent half a day with me taking me to appointments one time and was so kind I wanted to cry, but I've not seen her or talked to her since. My husband has become Mr. Sarcasm and "picks" at me all the time, then says I'm too sensitive if I get upset. He really does not get that ALL I want is a little kindness. And he gets upset if I try to make him understand. I finally called a lifelong friend to tell her about my diagnosis (she may have figured out I'm sick from brief mentions of dr. appts. on FB) and she didn't answer, won't answer, and won't call me back. I contacted an old friend who is a BC survivor and fairly vocal about it, and she was just shocked, didn't know how to react, and backed off. One of the kindest ladies at Church is just suddenly not there and not really speaking to me - I thought for some weeks I had made her mad at me. A few others have stepped up and checked on me and been very kind - they are like lifesavers, but I only speak to them a few minutes and not every week.
Overall it feels a bit like a Twilight Zone episode. My best support has come from a few good online friends from another forum I've participated in for the past 4 years or so, but I poured out everything to them and I get the sense they were getting tired of it a month or so ago so I stopped talking about it.
I really think we could benefit by having some kind of training in how to help people in our lives go through things. It would be nice if it was part of "being human". And it makes me think of people undergoing OTHER difficulties, loss of loved ones, aging, living alone, serious financial stress, illness of loved ones, disabilities, etc. I've experienced some of these, and not others, and I remember too that others rarely know what to say or how to respond, and often say or do the worst possible thing, I suppose out of not knowing how to help or being uncomfortable with the suffering of others. But we really have a lack of such kinds of help in the world, it seems to me. And it makes me very aware of how many opportunities I must have missed to be compassionate and show kindness, in my own ignorance.
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Summerbum - Wow! Your family needs to support you! Good that you're seeing a counselor.
Scout - My automatic response to how I am has been "I'm good". I need to change that.
9 of ~20 done. So glad the week is over. Rads is more emotionally draining than chemo was. During chemo, I just had to show up. No problem if I fall asleep. With the breath holding, I have to breathe in just right, hold it until they tell me to stop, keep my chin up to the right, and not arch my back. Repeat several times. They take several x-rays to make sure they're zapping the right area. They keep making adjustments, and I worry that I'm not getting my heart out of the way. Was on the table for 45 mins today. I'm not used to feeling anxious. I got an email from a co-worker saying that he's thinking of me and hopes I'm doing OK. My first thought is my boss is behind this to see if I'm feeling better since he called me a few weeks after chemo. He was surprised I was tired then. Guess I'm feeling paranoid as well.
Weight still trending down even after adding ice cream. Had a cheeseburger today. If weight still goes down, I'm gonna need some cheesecake. This problem I like!
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bbbb - I lost pretty much all my hair with AC and Taxol. I had some white fuzz growing before the end. At 5 weeks PFC, I could see a 5 o'clock shadow on my scalp. At 7 wks PFC, looks like a buzz cut.
Check out the Hair thread here https://community.breastcancer.org/forum/69/topics...
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summerbum - I read from your profile that you are triple positive ( ER+,PR+ HER2 +) will you be receiving Herceptin for your HER2 status? There is a very informational board for us triple positives. If you haven't already check it out. I'm glad you have someone to talk to , It helps to get all those emotions out .
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Seraphima:
I so relate to the Twilight Zone concept. The Breast Cancer Zone where friends slowly fade into the shadows.
I've lost a few friends over the past year of treatment and a couple relatives. Even my mom, who was at least there to talk, bring food and groceries, etc., freaked out about being exposed or contaminated during my 30 radiation treatments and couldn't see me in person. Now that I finished this past Tuesday (yay!), she is again talking about meeting me for lunch. I'm honestly not in a rush to do so. I know I have to forgive her and she is my mom but what kind of support is that? I spend way too much time thinking about who I am upset with and I know it isn't healthy...I just can't help but be angry. Nobody should have to deal with an illness and broken heart at the same time.
I didn't mean to go on about me, I just wanted you to know I can empathize totally.
Marcella
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serenity why do you need to hold your breath during rads? Does it depend on which side you have it on? I haven't started yet, but my Dr didn't mention that.
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Yes, breath holding is used to move your heart away from the treatment field. It's only for the left side, but it's not always required. It also depends on your tumor location. Your treatments will be quick without it.
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Seraphima, I haven't had that with my dx, but have when we found we couldn't have children, friends stopped inviting us, stopped talking to us... and when my husband passed, same thing... my sil came over to help once, looked at my house and said it was too overwhelming and i should be doing it by myself... totally understand..it's like being swept to the curbside...
Serenity, Mine is on my left side and my ro mentioned holding my breath.. i find out my oncotype monday and will see if i need chemo... i'm going for just radiation.. chemo is optional at this point..
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Having a CT scan on Monday to see if my tumors bed has shrunken down. Four weeks ago it was still swollen and filled with fluid. RO told me this week that she might not be able to do boosts on me because the seroma is too large of an area to radiate safely. While I would be happy to be finished, it makes me nervous to not get the full intended amount of radiation.
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B"H
twilight zone it is! i also feel like i REALLY hope i will myself be better at helping out anyone i know is facing whatever.... but it is really hard to grasp that we are suddenly faced with CA and people close to us just disappear? i think MarcellaPA got it so right - it is really hard to take on CA and a broken heart at the same time! sometimes i feel i am mostly doing okay with the CA, but the broken heart?... that is a different story....
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Anyone have advice on bras during Rads? My Ro told me I can expect skin problems in the next few weeks and I know my underwire bra will not work! Trying to find something that will work that I can work in. I teach school so wearing a bra is a must!
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bbbb, this is what I'm wearing for a bra. Bali Women's Comfort Revolution Wirefree Bra.
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Seraphemia - I am so sorry that people are treating you this way because of your diagnosis. It is hard to understand why people do what they do. Fear, ignorance, or just not knowing what to do is still no excuse for not being kind and compassionate. I pray that you find a cancer support group quickly. This forum and the forum I was on for chemo has been wonderful and so supportive but it is also good to actually talk to people face to face and get a hug of support! As far as your daughter and husband, I think fear is causing them to react in a way that is not helpful to you. Maybe they too need to talk to a support group to deal with all this. In the end, all you can control is yourself. I pray that God gives you peace and comfort and know that He is grieved when you are and He loves you and you can trust Him to take care of you, regardless of those around you!
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bbbb, I would also give a preliminary thumbs up to the Bali comfort revolution bra. I have two of these I've worn since before BC and think they'd be great for rads when I start. I can wear this under most of my clothing with good support and no show through. It is not very breathable if you are outside in heat and humidity though
The conversation about the "twilight zone" and reactions of others has been interesting. I can relate. Some people are barely talking to me, and others are continuing a normal friendship without missing a beat. I'm trying not to take the avoidance personally.
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Met with the RO Thursday I will be getting 28 rounds beginning on October 24th. My last round of chemo is 10/3, the doctor said she usually likes to wait a month PFC to begin treatment but since I've been doing so well she is willing to start sooner. My setup appointment is October 17th...anyone have advice for me as I get ready to begin this journey? Hope everyone is having a great week <
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Twilight Zone is a good description for us! I don't know if anyone has avoided me due to my diagnosis and disease. I do not live around my family and although a good bit of my family on facebook have contacted me since I mentioned it on facebook earlier this year (I was diagnosed Dec 2015), not all have. I was surprised only one of my aunts contacted me with support. It has been hurtful the others have not. I am the ONLY one in my family to be diagnosed with Cancer on my mom's side. I am not in contact with my dad's side of the family. So, besides my 3 kids, my support has come from my close friends and workfamily (I work for a very small company). This discussion board has been so helpful to talk about it without feeling like no one understands.
Hope everyone has had a relaxing weekend. I appreciate my weekends right now more than ever getting a break from the zaps. Back to the grind tomorrow the 4th week of RADs.
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#22 today. I can see a light at the end of the tunnel, so happy to be almost done!! I'm suddenly in a good place, I have changes to make in my life and I'm excited to do them (who says you can't make a total career change at 46?!?!).
I've had a couple friends sort of disappear too, some were there in the beginning then fell away, and I received amazing support from the most unexpected places.
I got rescanned for my boosts on Friday. They did tape instead of tattoos. One is directly in the middle of my cleavage...it will be a miracle if it stays put.
Have a great week everyone
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To Lifealoft:
Absolutely you can make a total career change at 46--I did and it was a great decision.
I posted this quote on my refrigerator:
"It's never too late to be who you might have been"---George Eliot.
Best of luck!
Marcella
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10 of ~20. Slept a lot this weekend. Skin doing OK. I haven't noticed any changes. Spent an hour on the table. They had trouble lining me up. Took about 10 x-rays before starting treatments.
LifeAloft - Good luck with career change! Sounds exciting!
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LifeAloft: Yay for being at the end! Definitely not to late to change careers at any age. I believe that we are learners for our life time and why not experience everything you can mange to experience. I hope your new career is something you love doing.
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Hi Everyone... I finally have my sim appt. on Thursday... Getting it started!
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Thank you for the well wishes! Marcella, I love that quote!!! It's something that I've wanted to do for years, and kept making excuses for myself, after this horrible year...no more excuses
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Lifealoft - Yes you can start a new career at 46. I went back to school at 47 and started a new teaching career at 49 and I love it. It was always a dream of mine to become a teacher and now I am living the dream. I love it! I have worked through chemo and now radiation - I think working has made things much better for me as it keeps my mind off cancer and on living and enjoying life! Good luck as you start your new career - you will be fabulous!
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Got my port removed today! I am so happy. All these cancer treatments are almost over. Removal was super easy. You just put numbing cream on prior to appointment ( I took a Xanax, too), then they numb you up some more, and you're awake through entire procedure. They let me listen to my headphones to keep my mind off things, but I still almost passed out. Not sure why. I never felt anything. Entire procedure took less than half an hour.
Went for 16/33 radiation treatment after. Skin is holding up well. Dr says I'm unlikely to have any peeling, burning, ore open sores, so I'm thinking of returning to work early. I am bored out of my mind. Weight loss has slowed down some. I'm now losing about a pound a week.
Hope everyone else is doing well.
Sabrina
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s1d1c1u1 yah!!!!!!! thats great.... your almost at the end..... happy for you! you have such a positive spirit! i start rads on thursday, i think i will also be having 33.... i guess its not the best way to do it, but i have been putting on weight, so maybe i'll lose some of it this way
:-)
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thereisnodespair Thanks :-)
I gained 17 pounds during my Taxol treatments from the steroids. I was never one to easily lose weight. I've always worked out 4-5 days a week and ate decently enough, but scale never budged, so that I'm losing during radiation was a surprise. My RO mentioned that I had lost a few pounds but wasn't concerned. He said once I lose more than 12 it becomes an issue during radiation alignment. Hope you experience the same thing. There's got to be some positive side effects, darn it! lol
Sabrina
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Congrats Sabrina on the port removal...hooray for you! I can't wait until my port and I part ways, we definitely have a love/ hate relationship. Question about the weight loss during radiation...is it because of the radiation itself or is it a SE (nausea, loss of appetite,etc.) or do you think it's because we are no longer on the steroids for chemo? I too gained weight while on taxol, not looking forward to the draining task of taking it off. Starting rads in 3 weeks.
Hope everyone is well
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Sabrina - Yay! Glad port removal was easy. I don't plan to return to work until at least a month after rads. Getting to the hospital and back takes about 5 hours a day with commuting and waiting times. I was told the effects may not be felt until after rads, and it could take 3 months to recover. I may try to ease into work.
Imkopy2 - I'm losing weight from stopping the steroids from Taxol and loss of appetite from rads. But they don't want you to lose too much because that could affect your treatment. I'm enjoying some extra treats to keep from losing too much. I'm down over 5 lbs from my simulation already.
11/~20. Only 30 mins on the table today! Trainee was just watching. Felt some warmth around my scar during bolus treatment, but it didn't last. Saw RO. She noticed swelling on my index finger on mastectomy side. It's been there about a week. Told her I planned to wear my sleeve/glove more often, but no recollection of injury. No pain either. She said we'd keep an eye on it. "No need to amputate yet!"
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Imkopy2 the weight loss is due to two things with me: first, rads makes you burn more calories just to recover from the radiation damage and second I have no appetite. I've been adding a protein bar daily just to make sure I'm getting enough to aide recovery.
SerenitySTAT phew no amputation today lmbo dodged a bullet there! So, lymphedema? Have you had issues with it or is this your first sign of it? As for work, I'm technically on leave until Nov 25 but I'm a retail manager and I cannot go into Black Friday just days prior! I've been keeping up with my temp manager and the store has been doing terrible recently and we don't have the staff we need. I feel like I need to get back in there asap. I can't go into holiday with no staff. I am worried abt the side effects that really won't hit until after treatment, but I just don't think I can stay on leave that long now. It was one thing while the store was doing ok, but that's no longer the case. I did tell my district manager I need the early shift because fatigue sets in early. I've been going to bed earlier and earlier each night plus I have a long commute to work. Can't have myself falling asleep at the wheel!
I spoke too soon about port removal...wow, it sure hurts now. I broke down and took narco that I had left over from surgery and ended up sleeping for several hours.
Sabrina
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