Coping After Treatment - Summer 2013
Comments
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Thanks Mum, I am going to look for that book on Amazon. Just back from my MO's office where two more Dr.s had to look at the cords running down the front of my stomach. Even my LE therapist had never seen anything like it before.. ( very reassuring!!) She wanted my MO to see it.
Just another fun day dealing with BC! I also have a cord in my axilla that is wicked sore. Gave up for the day .. Reclining with Advil, heating pad and the big screen. -
I wish we could quote easily on this BBF. Since we can't, this is in reply to Lenn13ka's wondering about how we handle other people thinking we're past BC despite still being in (less obvious) treatment.
Mostly, for me, I try to ignore it, I go on about my life, knowing it affects me still, even though most of my friends see me as being past my treatment. With my partner, I blew up once or twice. How the fu** am I supposed to be over it when I still hurt all the time, and I have to take tamoxifen every day, and have to take it for the next few years, my breast is still peeling... It isn't over just because I'm not going for treatment every day! Considering that he's nervous about getting sexual what with my pain, you'd've thought he grokked that it isn't "over", but instead we had to have a whole big talk about it.
I am back in school and feeling discouraged with the cluelessness of the young people around me. Dealing with my peers (in terms of my cohort) is like an anthropological experiment. Dealing with grad student professors in their early 20's is a abysmally bad joke. Of course, NOTHING I may have gone through in my 47 years (and this is to profs know my age and who have a letter from my oncologist) could possibly compare to your stress as a grad student going through midterms :eyeroll: :deepbreath: letting it go :sigh:
I am at a loss. I am feeling worse in these past several weeks than I ever did when I was in a more active part of treatment. I am filled with a turmoil of conflicting emotions because nearly everyone expects me to be over it. These expectations leave me feeling all the worse. Like, why do I feel worse when clearly I should feel better. I find I cut myself off, not wanting to subject the people around me to how badly I feel.
In other news, the house has not yet sold, but there is a family taking a second look Saturday, so that's promising.
Ugh, this is so negative. I'm sorry. -
Oh, and the peeling? I had rads over the summer, ending on 8/17. I got through with skin reddened but intact. The skin didn't start peeling until a couple of weeks later. Now, over two months later, the skin continues to peel. It's intact, but quite sensitive. How long did the peeling take to resolve for other rads women? -
Oh Cass, I totally get you. I'm having a hellofa down day after being able to do all kinds of stuff yesterday. We are STILL recovering. We need to stay connected because WE know this, but that's about it.
Peeling for me was continuous during the last couple of weeks and a week or two after. It was subtle. I moisturized a lot (like 5 times an hour) so most of it rolled off and stuck to my shirt or fell on my pants. Please take care of it. It still hurts sometimes. And my surgeon just told me to not expect to be able to do yoga at the same level I did before mastectomy. That won't keep me from trying but it will keep me from fretting about it. -
Cass - I didn't have peeling but 3 months post rads my breast is still very hot and tingly. Oh yeah, and then there is the lymphodema ( which couldn't come from rads- right). Another night of ice/ heat/ and Advil.
It is interesting to me how rads effects people so differently. I obviously developed lots if scar tissue( hence all the cords) but, I never peeled once.
Hang in there ladies! -
I will probably get shot down for this, but I used Bag Balm along with the aloe gel. No more than a bit of skin coming off at the end. I wanted it specifically because I had testimonials from our cows growing up. You would put it on their chapped teats/udders and they expressed instant relief. (Yes, part of my chores was doing the evening milking.)
As a bit of irony, I finally learned why. It's extremely soothing to a chapped/sunburned udder, I think because of the herbs it contains. I know this now from having used it on my own personal udder!!
My medical team was fine with me using this product and they were ready to fit me with ointments/bandages for the cycling events I did immediately following rads. I never needed this. No more than giving my bras a good washing, but that wasn't anything very difficult.
Feel better ladies. - Claire -
CasDugan - We understand how you feel.
Is there anything you can arrange to do soon that is something you specifically enjoy doing? A gentle or brisk walk in Nature (depending on what YOU prefer). A meal at a fancy restaurant? A massage or a reflexology session? Something that will make you feel good - even its just for an hour? Buy yourself something new (clothes, kitchen gadget, book, something YOU want).
Think of yourself as 2 people - and make sure the Healthy Cas treats and nurtures the cancer Cas.
You are really coping with a feeling of having lost something .... I think you are grieving for the old you. Be nice to the new you. Love and respect your new needs. Just tell people flat out what you want and expect from them. I think it is really hard for other people to know how to behave around us and they don't always know the right thing to say and do - so they pretend everything is OK in the hope that that is how it will be.
Also know that Tamoxifen might make you feel down and that exercise can help with that - even little bits.
Sending you gentle hugs -
Hey CassDugan
How are you? How is the peeling? -
Great advice, Cas. I'll borrow that myself today, too.
Take care, all! -
I am taking my day Friday! Good idea. We need a name for that day.
I will have a day off from work as it going to rain.I am going to get a facial,nails done....etc. No appt. with the lymphodema therapist this week. She gave me a couple of weeks off so I can finish my season and deal with it afterwards. I work April 1 - right before Thankgiving. I was diagnosed on April 2nd. It has been a LONG haul and I am exhausted. Crawling to the finish line, wrapped in spandex and sleeves. My body is beat up. And, oh joy, I end the season with an appt. with my BS on November 12. He is the least favorite member of my "team". I wonder what he will say about all the cords down my trunk (let me guess:" surgery didn't cause them").Sorry for the complaints.
Hope everyone is doing OK.
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I have my first meeting at the YMCA for the LIVESTRONG program on Wednsday. If you aren't familiar with the program, it's a FREE 12 week membership for cancer survivors. They are trained to work against lymphedema too, and to give each person individualized training.
I told her, I'm an X-large gal, who walks with a cane, and my goal is to get stronger, have more balance, and get rid of the cane. -
Hi All, Just got back from Oahu after celebrating 6 months post chemo. I'm doing pretty good on the Tamoxifen but the lingering aches and pains are a bummer and tend to keep me worried. I have some weird impingement thing going on with my right shoulder and it hurts like hell. I cant even throw the ball for the dog so I started p/t but not sure its going to do much. It just dawned on me recently that the chemo brain is getting better. Thank god! I felt like an idiot. -
Soteria205 - Glad to hear your news. Hope you enjoy the course mightly. It sounds great. Keep us posted. -
Wow ladies, looks like we're all trucking right along. Oahu, Livestrong, spa day! Awesome!
I just learned recently that my long term disability insurance is trying to jerk me out of access to the insurance benefit I've been paying for. Trying to say it's a preexisting condition. Just what I need. More stress. Ugh.
Makes me want to poke myself in the eye with a sharp object... -
No no no mummommama
Be nice to your eyes - poke someone else's eyes!
I find I get very easily upset by bureaucracy. I just don't want to have to invest my time and energy into sorting out things that should be running smoothly. At the slightest little upset I want to cry.
Gird your loins (the only battle cry I know, sorry) , be strong and fight. Make it very clear to the person you are dealing with that you are NEVER going to stop fighting for your rights. Sometimes it helps when they know you won't just take NO for an answer and go away quitely. Also tell them flat out they should be ashamed of themselves for giving you aggrevation at this time of your life.
Maybe someone will grow a conscience and do the right thing. -
Breast Cancer- a preexisting condition. REALLY!!! Stay strong mummomama. I agree with Bounce... Poke someone else's eye out.
Melody, your trip sounded great. I have one planned for when my season ends I can't wait.
Good luck at the Y Paula!!! -
Thank you. I really appreciate the support. I love the suggestions and will implement them if the case worker ever returns my calls (it'll be a week tomorrow). I've resorted to trying to get HR to help, which is also a bit tricky. At least they said they would make sure she (case worker) calls me to help me understand what exactly counts as a pre-existing condition in her understanding of it. Pathetic!
I know I'm not ready to go back full time to my high demand job. Not having access to this benefit also makes it impossible for me to ease back in slowly, which means if I don't get it, I'll have to be out longer until I'm fully recovered. I hoped that would light a fire under HR, but it's still radio silence here... -
Soteria I am looking into that program too, let me know what you think -
Melody~~I went for my sign up at YMCA Livestrong yesterday. There are 6 ladies in the class counting me. All but one was dx with BC. We will meet twice a week in the aerobics room to work on strength. They give us a free 12 week membership to use anytime we want. That includes all gym equipment and swimming pool. This class is the first one in my area. It lasts until December and then we are welcome, even encouraged to come back again in the Spring. I'm hoping this is the Kick Start I need.
Paula -
Paula, thanks for sharing the info about the Livestrong program. I will check to see if my Y has it. Love all the info you ladies provide.l -
Thanks Paula, I'm playing phone tag with them but it looks like they have it! -
For those of you on Tamoxifen..how are you doing? I am heading into my 5th month and have started to have "wicked" mood swings..which I didn't have in the beginning. Anyone else? I am also still getting occasional rad "brain fog". Sometime it just hits me...like today.
Energy level is pretty good though and my LE therapist has gotten things under control, so I can do so much more physically without getting swelling. This is good!
Good luck to all of you starting at the gym!
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look at you my ladies going to the gym nails hair trips.... Nice sounds so good!!!!
I'm doing great my port was removed yesterday sent my PS to hell looking for a new PS to work on my non TE radiated skin..... Dog got pregnant ... Lost 7 out 9 puppies was pretty sad ... But my new puppies give me joy....fall feels good in Miami....
My hubby is really great with me can't stand his family but he's just right for me.....
Just wondering if you guys still have that square tan from rads since August and my hands been tingling lately ..
My ladies don't let this cancer make you feel bad or wonder try to live to the fullest and keep turning the page because every day we live another chapter love you!! -
I still have the square tan from rads, finished mid May, it's fading, but slowly. RO said it would go away eventually, just takes a long time. I don't really care, it's covered by my clothes. -
I don't notice my area of treatment being any different in color, but my skin really had an easy time. I have noticed quite a few freckles/birthmarks and will have my RO check them in a week. I had my surgery June 7 and for the last few weeks have been getting zings, tenderness in my previously numb breast. I'm hoping this is just nerves reattaching, but am surprised at how far from surgery I'm getting this. Has anybody felt tenderness in ribs after rads? I have one area under my breast and to the side that almost feels like a bruised rib. Another ? For RO. -
Slv58 - I have definately have the rib/nerve pain and I had my surgery in April.. before you. It is finally getting a little better. I have been getting treatment for lympodema and that has greatly improved so, all the pain/numbness seems better. I am also trying to keep up with stretching and moving. My skin had no problems during rads or after. I think the rib pain was from rads,however.
Patricia -so good to hear you are doing OK!
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I still have my tan skin but it is fading slowly. I'm glad your talking about rib pain; I've had it since my surgery in Jan. I just happened to notice it before starting rads. I see the surgeon for follow up next week and I'm going to ask about it, this seems like a long time but who knows. Also have my mammo for both breasts next week and an appt with MO so I've been pretty edgy for a couple weeks now. Hopefully everything will come back great but its scary:( Tamoxifen I'm pretty sure is causing lots of achy joints. Lastly, I have the craziest hair! I wake up in the morning and look like I'm in the early stages of a stray cats pompadour. My son looked at me yesterday morning with a sly little smile and asked "whats up with your hair" lmao -
Hi Melidy - I had an appt. with my BS this week and he said you need to give everything a year to heal. Where you are at a year is where you will be. I have my lymphodema under control but all of a sudden my breast is super sensitive. I still have cords all over my stomach but all the swelling is gone.
Tamoxifen- the jury is still out. I think it makes me feel old and tired.. But trying to work through it...
Thanks ladies- I made it through my landscape design season. Last day today! Time to regroup and get my body healthy. These boards were a lifesaver for me as I pounded through this all with no one knowing. I am taking a deep breath!!! -
Well it's been over a year since my surgery and I still have pain every day, so I guess I better get used to it, if that's just how it's going to be from now on.
Pain, lymphedema, tamoxifen making me fat, yeah, the gift that keeps on giving.
Of course we are all glad to be alive, but all this other stuff just sucks! -
- I'm with you Jennie 93. Good description. Having an off day today so gave up and am watching movies. I should be doing something active to keep from getting fat from the Tamoxifen but I don't feel like it.
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