Exercise and well being during chemo and radiation

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    Keep in mind, too, that you'll want to limit your sun exposure during radiation. And do NOT take in mega-doses of anti-oxidants. This is one time that you WANT those free radicals running freely around your system. I was told that the amounts in a daily vitamin were fine, as was the vitamin D supplement. The effects of radiation continue for 1-2 months after end of treatment, so I was told to avoid the above for that per period as well.


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Thanks, Hopeful. My RO did say not to do a green tea blueberry smoothie cleanse or anything crazy like that, but also to not change my eating habits. Definitely no anti-oxidant vitamins ever again- I'm wondering if that is what made the cancer I had grow in the first place. Do you limit sun exposure to your whole body, or just the radiated area?

    Lymphedema sleeve wearers, did you wear yours during treatment? I'm worried about mine chafing my armpit?

    Yeah, I had a Derm appointment right after, and she said the good thing about chemo and rads is, practically 0 chance of developing skin cancer while in treatment, and chemo will take care of anything growing, which is good. Then she said breast cancer sufferers have a 50% chance of developing melanoma, and skin cancers loooooove to pop up in scars. So, we will be doing every 6 month skin checks indefinitly. I love her, but ugh.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    LB - I limited sun exposure to the entire body. I found that heat really irritated my skin - even though it wasn't burned, it would get hot and bothered and flushed. It took a much higher toll on me overall than heat normally would.

    In general, although my skin did very well and I didn't encounter too much fatigue, I rarely had any sense of well-being during radiation. Part of it was psychological - not knowing just how bad things would get and bracing myself for the cumulative effects. Another aspect was that the SEs were so variable - I never knew what to expect from one day to the next. You may not encounter that - this is a much less predictable experience than chemo, from what I've read.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    I think you'll know if you start chafing, and can alter your behavior accordingly.

    My RO just said that though opinions vary, I can restart my antioxidants tomorrow.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Hopeful, I haven't had any sense of well-being since the end of February LOL. That may be what I miss the most...

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    just got back from the hospital for truncal LE evaluation. It appears that there is significant fluid on the right and left. Not in the same places though. Going back for treatment Friday. In the meantime she really made my day.

    1) in all her years of practice she's "never seen a worse outcome scar-wise, surgically; and does not blame me for not wanting to look at it or touch my body". She recommends I see a PS at least to talk about my options, understanding I'm not anxious to go under the knife again.

    2) she feels my emotional state may be causing the pain to be worse and need to see my therapist more often than I am.

    I'm in a heap on the floor. Metaphorically speaking. The tears are real though and I can't stop them.

    WTF? I'm trying to be proactive and get the rest of the way through this. Yes the pain is better, though as the pain meds have been leaving the building, levels and creeping back up.

    Devastated. Help me.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    That's heavy stuff, Katy. I'm sorry. I'm glad that she affirmed your perceptions, though I'm sure you'd wish she had a better explanation. Can you see your therapist, or at least have a phone conversation?

    Holding you in my thoughts.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    I have an appt day after tomorrow. I guess I'll wait. Sitting in the hospital parking lot crying.

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  • octogirl
    octogirl Member Posts: 2,804
    edited August 2015

    Jackbirdie, I am SOO Sorry to hear this! Those are pretty harsh words to hear about the scar! I can't even imagine. But who is the she here? The LE therapist, or your MO? With all due respect to whoever said it, I am not sure it was helpful. But I don't want to second guess or diminish your feelings either.

    You've been strong, and proactive. You can get through this. Please tell us what we can do to help pick you off the floor.

    Love from

    Octogirl

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited August 2015

    Oh, Katy. I'm so sorry. Are you sure you want to drive? Anyone you know in your area who could meet you and take you home? I know you're a newbie in this town, but maybe there is someone who could help out?

    By "she," do you mean a physical therapist who specializes in lymphedema? Is this the first time you've seen her? Did you trust her overall? Did she suggest a PS, maybe someone she works with frequently? It might make you feel better to at least get an appointment with a PS, whether or not you go through with more surgery.

    I'm so sorry you're dealing with this.


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  • sailorbev
    sailorbev Member Posts: 75
    edited August 2015

    Oh, Katy, I am so sorry. I get why you are devastated. I am keeping you in my heart and hoping things get better. 

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    Thanks Rainny- it was pretty hard to hear and I'm not sure how helpful it was but as Susan said, it affirmed the truth. I hate to put lotion, anything topical on because I hate looking at it and feeling it. What a mess. I think I may just have to cry this one out.

    I already called the PS office for an appt. doesn't hurt to talk if I can manage not to cry.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited August 2015

    Katy, I'm at work now and can't type much on my phone, but I want you to know that I'm sending virtual hugs and passing a virtual Kleenex from Illinois.

    The person who told you those things could have been more tactful and worded it more delicately.

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited August 2015

    Every single person who works in a BC-related field has seen women cry. Multiple times. Probably men, too. The last thing to worry about, yes?

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  • Trvler
    Trvler Member Posts: 3,159
    edited August 2015

    Awww….Katy. Hugs. I never knew you felt that way about your scar. But maybe a PS CAN help you and make you feel better about how it appears? I am sorry about that idiot.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    Katy, you know your therapist. Would she be upset if you called for a check-in today? Or would she be upset if you didn't?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    Katy - that's a LOT to take in. I think it's worse because we try so hard to look after our interests and then we find, sometimes more than once, that the very people we'd carefully selected to provide our care have done a less-than-acceptable (or worse) job of it. There's a lot of frustration and betrayal all the way through this process, made far, far worse by our vulnerability.

    If you need names of a couple of good PS in Oregon, pm me. I realize you're probably not ready for more surgery but just knowing what would be involved and what the benefits could be might be very helpful. Bear in mind that if you're not massaging your scars, not doing self-LD, you may be taking risks with your health.

    I know you have an appt. day after tomorrow w/your therapist but please consider calling the hospital to see if there is a cancer social worker who could talk with you or see you in the meantime.

    Sending you gentle hugs and a great deal of support.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    LB - Yes, well, I doubt any of us have had a real sense of well-being since dx., which for me has been year. What I meant was that it was different during RT - a downward progression rather than being on an even keel and it certainly turned back the clock on the recovery from surgery, which had been coming along nicely. Your results may vary. ;)

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  • SueH58
    SueH58 Member Posts: 632
    edited August 2015

    Hopeful, why would not massaging your scars be harmful to your health?

    Dearest Katy, oh brave one. You have been through SO MUCH, from the surgery, through your treatments, you finalized divorce, your rats! But you made it, and are now exercising, eating healthy, got Tutti! I hope you can take a moment to feel how far you've come and how much you have to be proud for. Then, yes, seek a PS for options and I agree, see if there's anyone you can talk to today.

    You know we all love you and are sending good mojo and warm vibes. Please hang in there.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    yeah. Therapist/shrink on vaca till tomorrow.

    Nurse navigator appt. next month. For my stupid survival plan. Not available right now.

    No cancer social worker.

    Next best thing. Bread. Went to my favorite bakery since it's near the hospital. Thought I was okay to go in. Not. Total meltdown. Nice people very understanding. I'm a regular and they came around the counter and gave me a very gentle group hug. Then gave me a bunch of free stuff. It's the best bakery within hundreds of miles. I'm rich. Haha. Life is funny.

    Thanks Hopeful. Beautifully written. You know I love the word porn.

    And everybody else. You all came INSTANTLY to my rescue. My bestie just got around to texting me back after some time. It's not over, but I took a clonazepam and I can see to drive home now. Snuggles with my therapy dog self-scripted.

    Thank you all. Love you from the bottom of my 💔 heart.

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  • SueH58
    SueH58 Member Posts: 632
    edited August 2015

    Glad you're feeling better, Katy. And I agree that some warm bread with soft butter pretty much cures what ails you. And for everything else, chocolate cake.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    btw, the PS is Portland based. Does mostly breast and hand.Vangelisti. Flies in once a week. Anybody ever hear of him? Lake Oswego actually not Portland. How can I possibly endure another surgery?

    I just don't know how I won't wind up in rehab.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    The answer is the judicious use of cake therapy. Please take your first dose immediately.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    Sue - not massaging the scars can allow scar tissue to build up inside which can in turn exacerbate LE. That's per 2 LE PTs. Scar tissue also tends to limit range of motion which increases pain and degrades QOL.

    Katy - scar revision surgery may not be nearly as bad as you're thinking. It's probably just the skin that's affected, rather than the muscles. I'm not familiar with Vangelisti but looked him up on line and it looks like he might be a good choice. It appears that he does a lot of work with damaged tissues, so is not simply a nip and tuck type of plastic surgeon.

    Why don't you make an appt. to find out what's involved? You might even be able to speak with his PA or similar and get some info sooner rather than later.

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  • octogirl
    octogirl Member Posts: 2,804
    edited August 2015

    cake and bread are almost as good as hugs. Sending you virtual hugs but very glad the cake, bread and bakery is real.

    I agree that an apt with ps just to talk about it might make sense. and maybe asking therapist if she/he has a vacay backup (other than the bread)?

    My ducky tissues have your name on them.

    Octogirl.

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  • Lovemylab
    Lovemylab Member Posts: 80
    edited August 2015

    So sorry Katy. That is a lot to take in. Get some rest and I hope tomorrow is a better day!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    I made the call. They're trying to fit me in. I'll have to squeeze it in between the two cataract surgeries (thank you chemo).

    Ideally, for reasons emotional and financial, would like this done. Finished in 2015.

    You all have helped immensely. I'm still 40 minutes from home. Keep pulling over crying pretty hard. It's not a "why me" cry. It's deep frustration. I have tried so hard to be positive. I feel like a fraud.

    Hopeful, thanks for taking the time to look him up. Means so much. And the new idea that maybe this sort of surgery wouldn't be as bad due to its inherently less invasive nature. Gave me a glimmer of hope.

    Speaking of hope, I hope I'm laughing at myself (or better yet, WITH myself) by this time tomorrow.

    Love you guys.

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited August 2015

    Katy, you've been miserable with the scar and in what sounds like a great deal of pain. The LE consultant may not have been the most tactful, but perhaps has put the two together in a way that might help you start to mend. I have at various times in my life been called a pollyanna, but maybe this is the start of all kinds of healing? I hope so.

    And maybe ask the PS's office person if they can recommend a social worker to help you in the meantime before the appointment?

    Sending hugs your way. Baked goods as therapy will have to do for now, but it sounds as if you may have some real possibilities when all is said and done. I hope so!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    Octo- I was given a back up shrink to call. Feel like it would take me till Thursday anyway to get him on the same page. I'll take you guys until then.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    There's no need to try to be positive about this, Katy. breast cancer is the pits and I, for one, am pretty much done with the expectation that we'll be gracious and positive and upbeat about any aspect of it. To me, THAT is the fraud. It contributes to and perpetuates the notion that no, breast cancer's no big deal - just wear some pink and run the race and you'll be fine.

    Let yourself admit that this is a rotten hand you've been dealt. You'll feel better and it will be more authentically you. End of lecture...

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