New phase - new forum
Comments
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Moth - I am going to read the book. Thanks for suggesting it!
Piperkay - Sort of good news today. There is an area of inhomogeneous tissue in my left breast. Not cancerous apparently and I shouldn't be too worried. I have to go back in 6 months for another mammogram and ultrasound. It's good that they are keeping an eye on things. I see my RO in 3 weeks so I'll get more info from her. My PCP tells me that I'm in remission. I never know what to say either so just say nothing!
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So far, I say "I was diagnosed with breast cancer 10 months ago. I just finished treatment and right now, I'm cancer free."
What will I say in a year? I don't know yet, but I expect I'll have the same struggles others are.
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I never liked the fighting or survivor images. I don't see this as a battle. It's just a permanent part of my life. I'm further out than most of you - and there are many days I can actually ignore it or maybe even forget for awhile. In all honesty, I will never be back where I was before. One of the things that pisses me off is I can't separate the residual problems caused by cancer & treatment from what problems I might have had with normal aging anyway. And I'll never know. Would I still have been able to run around on the bow of a boat under sail? Unfortunately the balance is no longer there with 'dead' feet.
After my first round, I really put it away & never thought much about it. I was 'cured', right? Since I've already had a recurrence (albeit 5 years now) I just say I'm NED. But mostly I don't talk about cancer. When I share, it's about the side effects of treatment - lymphadema, CIPN (peripheral neuropathy), some residual lung damage, etc. I'm not shy about sharing, but I don't bring it up unless one of these things causes me a problem functioning & keeping up with everyone else. Or I have to decline an activity & explain why.
I get to exercise classes twice a week and chair yoga a third day. In the summer I add two or three sessions of water aerobics a week. So I'm capable of physically doing much of what I want. I don't bounce back as quickly, and sometimes need a day off, but my energy level is still high.
And in the end, we all make compromises every day. Or as Linda Ellerbee says, 'and so it goes...' And I am as mad & sad as Linda is about Cokie Roberts death.
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Yesterday I went to the acute care clinic for the worst cold I've had in decades. I don't have much physical or mental tolerance for feeling like crap, and I just wanted to be sure I don't have a secondary bacterial infection, like strep throat. The attending physician said something to me about the cancer and that at least it's over. I looked her straight in the eyes and said, "It's NOT over." She stumbled a bit over saying right, but now it's just follow-up appointments...
A couple minutes later she stopped and apologized, said she didn't mean to minimize my experience and understands that it isn't really over when the treatment is done. I agreed.
If nothing else, it was a good lesson for the resident doctor, who was also in the room.
At the same time, I'm dealing with issues with my son (on various fronts I don't even understand.) He seems to think I should just get over it by now. Frustrating.
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Bumping this thread up.
I am glad to have found this thread. I am 2 years past active treatment (TE to implant exchange was done), 3 years past MX, chemo and rads. When I recovered from the exchange, I felt fairly well. I expected to still experience fatigue a bit, but energy was heading back to "near normal". At least, I thought so. Now I feel as though every little thing is a challenge.
Like Minus Two, I never know if some symptom is due to general ageing, long-term side effects of chemo/surgery/rads, or something else entirely. And I never know which doctor to call first, the PCP, MO or Breast Specialist. What's the phrase? It's like being nibbled to death by ducks.
Just glad I'm in good company.
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SummerRain - love it "nibbled to death by ducks".
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And now it's a toss up between "my cancer is back" and "I have COVID-19"!! Does that mean we're being nibbled by bigger ducks?? Or maybe now it's geese? LOL
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Thanks for bumping this back into activity. I'm now a year past my lumpectomy, and just less than a year since my first chemo. It's sort of like, every day is a first anniversary of something. I'm not remembering things in great detail, but more like pins are pricking me, just little OWs!
I read this week that the recurrence rate for TNBC in the first 5 years after diagnosis is about 22%. And I read it's about 25%. And I read it's about 42%. This is all in academic research! You'd think they'd be able to agree on smaller range. Regardless, I don't like the odds. And it really leaves me feeling helpless, it's a roll of the dice.
I'm not really this gloomy all the time, but today is a down day for me. Thanks for letting me air this bit.
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I'm 2 weeks post treatment, now to start hormone blockers. I've been on an emotional roller coaster and so glad to have found this thread to know that a lot of what I'm feeling is normal. Thank you beautiful survivors for your honesty!
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So glad to have this thread active again. Hugs to all !!
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Happy to have found this forum! Diagnosis was a year ago tomorrow, was in chemo June-October 2019, surgery in October, radiation December-January 2020. So I'm four months out from treatment.
I know this will sound really weird, but the stay-at-home/shutdown of COVID-19 feels like the world has slowed down to my speed. After the completion of radiation in early January 2020, the world felt way too fast and noisy and careless. Now it feels like the world and I are about at the same pace, and I hope it will be easier to slot myself back in.
I was lucky enough to have a radiation oncologist who prescribed physical therapy so I could regain my strength and fitness, and it was a godsend. The first few weeks were scar tissue and lymphodema management, then after radiation was over, I moved to rebuilding strength by focusing on core work (lots of planks), and leg and upper body strength. I can't say I feel like myself, because I don't remember who I was before diagnosis, but I am way more comfortable in my own skin that I thought I would ever be. Plus I don't feel weak or sick or old, and I was feeling all those at the end of radiation.
My challenge now is I don't know what I want to do with myself. My work isn't nearly as compelling as it was before, but I'm not sure what direction to take, and it's not clear to me yet how to find the right direction. Plus I have no idea what to do with all this curly gray hair, especially since I can't get a haircut!
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Hi HolgaGirl! You sound a lot like me, right down to the curly gray hair that I can't get cut! My chemo ended a year ago March, and I had gotten a trim three times so that it grew out in a controlled way. I had decided to keep it ultra short because it actually really looked cute that way and because I didn't want the hassle of growing it out. Then bam, the pandemic, and now I have to keep letting it grow. It's unruly and unattractive and I'm glad so few people can see it! LOL! It's so curly that if I try to cut it myself, it'll look even worse. Oh well. It's only hair - like I told myself when I was bald last year - and it definitely grew back. Bald was so easy... And so are hats!
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Holgagirl, I have similar feelings. But I don't think the world has slowed down, I think the new public crisis helped erased bad memories of old private crisis.
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