Calling all TNs
Comments
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Inspired - Wow you can go! I was feeling like such a wimp about what little I do each day when compared to your day. Then I saw you are only 45. At 45 I was teaching high school in the day and adult school at night. In between taking 3 teenage daughters to various events, etc. My DD expected a homecooked meal on the table at 6PM. But I wasn't recovering from BC at the time. I'm 71 now and my body reminds me of my age every day. So sorry you got your BC so young, but so happy you feel so strong. Yeah for youth!!!!!
Susan - It seems all doctors have a slightly different view of follow up care. My original oncologist was scanning me all the time. That made me feel secure that I was OK. My new oncologist won't do any scanning until some symptom calls for it. Now that I realize how much radiation comes with the various scans, I'm sorry that I've had so many. But I do see your radiologist's point about getting baseline pictures; that sounds very reasonable. Others on this thread will offer their experiences. Good luck.
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Hi Jan! It is a challenge for me to go everyday, but I keep my list on the fridge, so I can keep track and hold myself accountable. Yesterday, I didn't work out, and I thought, regarding all that I had done yesterday: 'this had better count as exercise.'
There is a lady that I exercise next to sometimes, and she is a 7-year survivor of bc. She didn't do radiation or chemo, they just removed her lump. She was on a specific medication though for ER+, but that just ended. It wasn't Tamoxifen. She is 75 years old, and you would not know it! She is amazing, and looks so youthful, and exercises 3x a week. I would have placed her at 50-55 years of age. I so want to be like her when I get to her age! She is a great point of reference for me to look up to, and I do like working out next to her - she is a lot of fun!
How fun to have 3 Daughters!
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I am over 4 years out...52 months on july 20..to be exact...and I see the onc and bs every six months..mammo every year...I actually didn't freak out about the mammo this year..compared to last year and the year before that....not saying I'm back to normal..whatever that is...but right now the appts. are just something that I have to do..and I don't like them but I do them...I just want to forget this crap ever happened but I know I can't..dang it....not sure what will happen at 5 years out...but I am going to insist on keeping with the every 6 months..well....forever...after the first 2 years..which is our scary time for tn...you tend to maybe relax a little...and start to have hope...that maybe, just maybe things will be ok.....still be diligent of of course...
I remember when I started to exercise..during chemo and realizing that eating right and exercising was something I can never ever stop doing....and well now..I like the shape I'm in....could stand to lose a few pounds..but it will come....physically adjusting is not so bad...it is has always been the mental part of this disease that I have had a hard time with...losing Dawn and our other friends has hurt so badly but it is something we have to accept with this disease.....and part of our mental health is accepting this and dealing with it.
ah..chemo brain...it is amazing how it really does get better...I have worked through it all...and I feel that it is just the past few months that I'm finally getting back to where I was before.....thank God my employers lightened up with me during that time...now though...I feel better and ready to take on more challenges.....
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Hello ladies - checking in from Chicago on the last night of my bucket list trip. It has been a wonderful trip! I love Chicago, so much to see and do and the weather has been marvelous!
I so glad my girlfriend, who is also my PCP, is on the trip with me.
Love you Annie - I know the loss of Dawn has been hard.
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Well, Karen, I bet you get all kinds of extra insight and firsthand information, since your girlfriend is your PCP! That is awesome.
Your trip sounds so much fun, and glad the windy city was very hospitable to you! What is your next new adventure going to be?
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Titan - it's great to hear our TN leader is doing well.
Karen - so happy to hear you've had a wonderful time. Any news back on the testing you were waiting for?0 -
Hey Kathy...how is it going...know you are going through alot right now..hoping you can get a little poker in...we have going to the casino a bit too much...lol..
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I am six months post-ACT chemo, working full time but very tired. I can walk for 45 minutes or run for 15/walk for 30, but getting up in the morning and then in the late afternoons I am very tired. Sleeping for 10 hours does not get rid of it, although it's better than getting 8. Definitely not my former self. (I am 45.). On the plus side, I've lost 16 lb. so far from healthy eating and no drinking.
How long did this last for others? How long until I don't wake up with swollen head feeling and tired and until I don't have to go to bed early?0 -
placid...your signature says it all...surgery in Feb Radiation in March.. All of these things take their toll on us and we must give our bodies time to heal. Healing takes tremendous energy. I too am 45 and my recon is just not how I imagined it going so it will be a while before I feel like my old self...much less before I am cleared by doc to exercise. Patience is the key and follow what your body demands. Some nights for me that means bed at 9pm and I need sleeping pills to sleep not to mention the occasional xanax
Hang in there. I was almost there when my recon began so I know it is possibleMaggie
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Hi Placid,
I'm wondering if you are really fit to be back at work fulltime?
I saw my breast cancer supportive care doctor this week, and asked her if I should expect to still be off work by November, as I'm planning a trip to Hawaii, and wondered if I should book leave. I will finish three weeks of radiation on August 12.
To my surprise she said she strongly advised me not to consider returning to work until at least the end of November. She then went on to say that returning to work just before Christmas was not a good idea and so I really shouldn't plan to return until the new year. AND that it would take a further three months before I would get up to full time!!
She saw I was gobsmacked, and said that she knew I was planning/hoping to return earlier, but that going back too early leads to immense stress and fatigue, and if people end up having to go back on sick leave it is extremely demoralizing, and really undermines a person's confidence that they will be able to return to the same job at all!
She asked me to reframe my ideas to plan to return "well" rather than "early" to work!
I'm still somewhat sceptical that I shall need to stay off so long, but I guess we shall see! An insurance company is covering my disability payments, and she said they know her well, and will accept her opinion without question when she helps me to make a return to work plan.
Post cancer fatigue is a very real effect, and its the mental, emotional and physical effects of the diagnosis and all the treatments we endure. I guess we cannot necessarily expect to just shrug them off and be back to normal any time soon!
Take care of yourself. xxx0 -
I see my PCP for bloodwork every 6 months...Onc every 6 months and a mammo yearly. Bone density test every 2 years.
He does not do any USs or MRIs or any testing unless symptoms appear. So far, so good! I have not seen my BS since the followup after surgery. That was over 2 years ago. I had a lumpectomy.
I am almost 70 and feel pretty much as I did before all this began...the chemo brain or just old age remains the same! Bring on all those crosswords!
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Morwenna: That was the return-to-work schedule that my sister was advised too. She finished treatment in August 2009, started back part-time (shortened days, 3 days a week) in January then full-time in mid February. I'm self-employed, and didn't have disability insurance, I just worked reduced hours throughout. I think everyone is different in recovery time, but it's worth remembering that your body has endured quite an onslaught and it needs time to heal. For those who can do it, phasing in a return-to-work is a good option to see how it goes.
Re follow-up: At almost 4 years out, I see my onc now once per year, and my BS once per year (6 months apart each). I have an annual mammo, no other scans unless symptoms arise that need investigating. For the first 2 years I was getting an annual MRI too. Bloodwork annually by my PCP.
Re vision: I couldn't wear contacts during chemo, but I returned to them after. I have slight astigmatism, which occasionally gives me blurriness with my contacts; it has gotten worse since treatment, but it may be just natural deterioration.
Re chemo brain: The head fogginess disappeared a few weeks after treatment, but I still suffer from chemo brain... memory lapses, slower processing and inability to find the precise word (an occupational disability when you're a writer!). It has gotten better over time, but it is still a frustration for me. For example, with memory, I used to forget the simplest appointments or what I had to do that day... now it is more a case of forgetting the gist of a conversation, movie or news story a few days afterwards.
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My wife is now 8 treatments into a 12 treatment chemo plan. Tomorrow will be number 9. You can see that the chemo is starting to catch up with her. More and more fatigue. Some nausea that wasn't previously there. Achy all over. I suspect that these last 3 or 4 treatments are probably just the "steepest part of the hill". Can anybody tell me how long after the last chemo treatment a person should start to feel better? I know "normal" will probably take a while as her body builds back up. But, how long before felling "better" kicks in?
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I think it's different for everyone but defintely just the mental part of knowing treatment is over, will really improve how she is feeling once treatment is over. I remember mine ended on April 4th, and got the port out on April 30th. That is when I started to really significantly improve. We had a birthday event at the end of May, and I remember feeling really good, just tired a bit in the day, but not too bad. May 30th had tissue expander exchange, and by July 1st feeling great. So a good 90 days before back into a semi-productive routine, but immediately started feeling better once treatment ended, about 3 weeks later. Took 15 months to reach full 100%, but reached 90% probably with 6-9 months. The treatments are accumulative, so each subsequent treatment could have enhanced effects from the previous one. I've also read that typical time for body to be back to repair after this is 18 months on up to 2 years, for things like the liver.
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Thanks Inspired! There is the factor of radiation as well. But I'm hoping maybe that won't be quite as bad.
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I noticed a huge difference two or three weeks after my last treatment. I still feel like Im recoverying honestly, have a lot of weakness now.
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Cocker_Spaniel: thanks for the info. Agoraphobia is fear of leaving your home so it is going to be a struggle............:( but I do appreciate all the information that you shared with me. I go Wednesday for my simulation.
Mags: Thanks for the group hug.......:) Congrats on the two years.Debra: I had a talk with her today and she did not mean it the way it sounded. She just meant that if that should happen, then I would not be suffering with all the stuff I am dealing with. She was trying to comfort me.........people just don't realize the way they word things may make it worse.
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Graceforme: thank you for the prayers
GROUP: I have had issues with my eyes ever since doing chemo two years ago and then when I did it again recently it just made it all get stirred up again and this time (Taxotere) I get the teary eyes (mainly my left) from time to time where the tears just poor. I was very upset when it started messing with my eyes because I thought that I could get caught up on my reading and still to this day I don't want to read because of the way my eyes are. Having what they call "40" eyes is not helping either. They say that is where when you look down you can no longer see the stuff without getting reading glasses.
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Oh Stupid Boob, that's awesome that you got a chance to talk with her and find out where she was coming from. I agree, that almost all people are operating from a place of wanting to help.
I just recently learned that Paula Dean used to have agoraphobia, and now she is the owner of a tremendous brand, image and empire (sans scandal). I've wanted to learn more about how she overcame this, because she didn't just overcome it, she mastered a new lifestyle in a very big way. My cousin also used to be married to someone who had agoraphobia.
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StupidBoob, I used warm washclothes on my eyes to keep the swelling and reaction down, which reduced the tearing. I also used a very nonperfume, hypoallergenic glycerin soap for washing my face.
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I was 43 when I finished surgery/chemo/rads after round one of BC. It took a couple of years to get my strength back or adjust to my new normal. Be patient with yourself. When your body says rest, do so! Your body is recovering from a great assault.
Still awaiting my tumor testing results. May take 2 more weeks.0 -
Debra she talks about it pretty good in her book. She even took her kids out of after school programs because she could not take them. I knew she was one who would understand when I read the part where she said she would look out the window and just wish she could go out and she could not understand why she could not. I have done that so many times and unless you live it you can't understand because even in our own minds we say...........WHY CAN'T YOU.........very aggravating and I am so hoping and praying that this does not throw her back in it. She worked hard to get out of it.
Thanks for the heads up on the warm cloths
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Hi ladies,
I am almost three months post chemo and I have lost my thumnail and now a big toe nail. I didnt even feel the toenail fall off. I really hope I dont lose anymore! This recovery stuff is crazy!0 -
Sweet pickle, that's horrible. I have my last taxol this Thursday & have been concerned about the way my nail beds feel.
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Sweet pickle-same here! I'm 9 weeks pfc, big toe nail fell off, didn't feel it at all. Sat. I stubbed my foot and lost another toenail-that one hurt like he%#! My thumb nails are feeling like there is pressure under the nail, hope I don't loose them as well. No one seems to understand why this bothers me so much. Hubby just sloughs it off, like no big deal. Same as my kids, but they don't understand that I have bravely taken everything my treatments have caused, and I am just tired of the "extras" that pop up! Still don't have any eyelashes. But I want to make sure that I say that I am grateful for chemo getting rid of my C, I just want to start feeling like "me"
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I'm 15 months post chemo and still have only baby eyelashes. My husband said they are not long enough yet for me to try mascara.
Like Syl58 mentioned, very grateful to have had treatment and insurance.
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Gotta feeling I might look like this one day if I continue to work and smoke (even got the dictaphones on lol).
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I lost one toenail...very weird..and it was a few months after chemo..I just kinda sighed and said whatever....and my eyelashes are still weird...pretty thick for awhile then very thin for a longer while...ah well..whatever....what can you do.
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Morwenna - my return to work was similar timing to what's been recommended for you. During 2010, I finished chemo in February and then rads at the start of May. I returned to work at the start of September on a six-week gradual return. By Oct. 18th, I resumed my full-time schedule.
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Annie - I want to say something clever, but can't think what that might be. You know we all might end up like that, smokers or not. I think we'd be pretty cold, too. Talk later, Jan
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