Why was I stronger DURING treatment than I am now?
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Purl and Jennie,
I too recognise much of what you write. My hair pre-chemo was mad and wild (not in a nice way), but when I run my fingers through it now the thinning and limpness reminds me of cancer constantly. I feel too that even my facial expressions have changed there is just something inherently changed about me. It is near impossible to define. I too have the numbness and tightness and I am to be found constantly tugging at my clothing in an attempt to hide the prosthesis and hollowness that now remains of my lost breast.
Sometimes I catch myself being 'normal' and then I am reminded about the cancer in some small way. whichever way I turn it always comes back to cancer. I wish it were not so, but I try not to fight that feeling but accept it - i think that it is the best way to cope with it. I am largely able to function quite well, but this is because I am on industrial strength anti-depressants. Nearly 2 years now post dx and I still feel bewildered as to all that has happened. If only our emotions might generate as readily as our nerves. I feel a shadow of what I was. How to make it better? - wow, I ask myself that all the time......
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Oh Wintersocks: (((hug)) If "this" is a shadow of the previous you....WOW.
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Winter - do you remember I felt a lot like you last year? When I stopped Femara I re-connected with the old me again. After two months I started a different AI (Exemestane) and I have not had the same severe side effects and definitely not the horrible emotional ones. I have side effects yes but it was the depressive elements of Femara that ground me down........all this was done in conjunction with the Oncologist at Royal Marsden and he said taking a break from AIs can actually be helpful, so long as its not too long, and iots important to have a gap if you are planning to change from one AI to another......just offering it in case you think its worth trying for you?
I am still not body happy etc but the aawful bleakness of Femara depression has gone......of course I still get black days or weeks but even those at their worst are not the same as when I was on Femara.....
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Before cancer if something happened to me I knew it would heal and all would be well. Now when something happens, I always get scared that it will be permanent. I understand what Jennie is saying as a dx in 2012 is one year of less healing time then some of us My underarm nerves did not fix themselves, but there are worse parts of me that could be numb. I don't grow hair on my body the way I used to, but I'm thankful the hair on my head looks normal again. I saw a women today without hair and wanted to reach out, but wasn't sure if I should. She could have had chemo for a number of reasons or maybe even alopecia, since our eyes didn't meet, I said nothing.
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I hope I did not come off as harsh. It's not what I intended.
It happens that I have a good friend who has a bad hip. She went to the dr and he showed her the x-ray and told her she needed a new hip immediately, she has no cartlidge left. I tried t reassure her that things can change but she was beside herself. She'd never been sick, never had arthritis, etc. She kept saying she would be a "cripple". She wouldn't believe me when I tried to reassure her that it can turn on a dime.
Well, two days ago she told me the pain was gone. Poof! Just like that!
I know pain works on our thinking and it's easy to think all is lost when it just isn't.
I was told 5 years ago that I needed two new knees immediately. I'm still walking, and pain free.
The body is just so strange in it's ability to heal and regenerate and I just haven't found these things to be so predictable. I'm trying to remind myself, as well as you guys, that we just don't know what will happen in the future and we have to keep hope alive. It's actually the most realistic thing to do at times!
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Yep, just a week or so after chemo ended I fell off my bike going very slow. I twisted my leg and was left limping around. After a few more weeks, when I felt like an old lady every time I got up, I had an MRI that showed a meniscus tear and a mess. I was scheduled for surgery since I really wanted to walk normal again and after pre-ops and everything... poof pain gone. Darn thing healed around the 12 week mark. Haven't had a problem with the knee since.
As we all know, things change. Sometimes it's overnight and sometimes other crap just replaces it.
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Rabbit43- very probable SE from the Tamoxifen. Ask your oncologist if you can try another hormone blocker. I was so emotional on it when I was usually even keeled. Your a saint for taking care of your kids and household already. Big hugs coming out to you.
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I have not been on my bike since my last chemo, 2 years ago. I don't feel my balance is the same.
Do you feel that way? In fact I even prefer walking with my husband now, holding on to him.
Last chemo I tripped and fell flat on my face. Broke my front teeth, I don't think that would have happened if I hadn't been on chemo. I was too weak and unsteady to catch myself.
I so miss riding my bike!
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Timbuktu, I tried riding my bike last summer and fell over AFTER I stopped. That was humiliating and painful. Road rash really, really hurts. I think my problem was a combo of balance and technique. I really should work on my balance.
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Yeah, I'e done that too. I thought I was being so careful but really you have to MOVE to stay balanced on a bike.
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I'm about 2.3 years out from treatment; I find that some things healed quickly, some slowly, and some still plague me.
What healed quickly: low red blood cell count (and accompanying shortness of breath), nausea/lack of appetite, constipation.
What took up to around a year: fingernails black/brittle, hair kinky, the worst of the chemo brain, the worst of the rib pain
What still plagues me: fatigue, occasional mental fog, occasional mild rib pain, mild truncal lymphedema, some numbness near the incision.
I have to remind myself that we are all different people, with different genes, different comorbidities, different cancers and different treatments. I breezed through radiation but a friend had terrible problems through radiation. I'm still dragging two years after chemo, but my neighbor, after less time, is perky as anything (although she's triple negative, so no AI for her).
And as I recall, I did have some balance issues during chemo and for several months afterwards. I would actually bump into walls sometimes...felt like a total spaz.
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Ditto on the brain fog and fatigue. And oh yes - motor skills. The other day I was trying to access a key from my key ring, and I felt like I was a baby playing with a key ring from Fisher-Price. Eventually it just fell to the ground. I don't know if it's the treatment, or menopause, or lymphedema - but I get what it feels like to be a 'total spaz'.
My partner keeps reminding me to close the fridge door - and turn off the stove. I can't even begin to explain to him that I am doing my best. I'm not careless - I'm just crazy. And I'm still bumping into walls! Well, door frames mostly. I always seem to go a little cockeyed when I go from room to room.
Again - I don't know what is my natural progression, and what is cancer related. My sister reminded me that I was kicked out of ballet when I was in grade school. The teacher said I was 'wasting her time'. However I'm okay on a bike - but I would never again go out without a helmut. In fact, I should probably just keep my helmut on all day.
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LOL janet! Ditto!
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My bike fall was my fault. I was excited when chemo was done, trying to get back to the old me and I road my bike to my dd's bus stop while she rode her scooter. I was carrying her scooter back when it got stuck in my spokes and down I went. That was the left knee, but now I'm dealing with problems with my left foot. Fell off a wall... my fault and bashed my foot on a ladder rung... my fault I was wearing flip flops on both occasions and now I am paying the price. Now when I even look at a ladder, I think SHOES AND SOCKS!
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What timing. Just yesterday I added "tune-up bike" to my to do list. Thank you for reminding me to take it slow ladies. I may get the tune-up done and just stare at the bike through the summer, but hey, it's tuned up! Jeannie, that would be me; ride for a little bit, stop, then topple over. Even "thinking" about cycling raises my heart rate. "Helmet on all day" made me chuckle Janet. Nothing like beginning a day with a chuckle.
I am glad to have company in the "bumping" into walls arena. Each time, it's such a shock, like "when did that doorway get narrowed or wall get put up?"
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LOL, Janet! I'm often bumping into walls and doorways, too, and it's my arms that pay the price. I'm always surprised when it happens, feeling like a pinball machine. I often misplace things and have trouble finding the right word sometimes. I don't know where my stamina has gone. I am truckin' along, though.
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Thanks ladies, makes me feel like I'm not the only klutz..I smash into the bed frame every other day. Hold on to the walls when I need to use the bathroom in the middle of the night...
I was never this clumsy before. About a month ago, I had deep bruises in several places. Oh, I accidentally ( obviously ) hit my shin bone with a golf club. I swelled up instantly, huge monkey lump. I showed the bruises to RO. He commented that I was always like that..I was thinking NO, but they will heal..
Janet, lol on keeping that helmet on all day...you guys have got me thinking about a new bike. DH has a fantastic one that I can use but that seat ! Yikes, it a racing seat, no way...
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Um how about a 3 wheel trike for adults?
Ducking from shoes, golf balls and other objects being thrown. LOL
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Holeinone - Have you thought about getting a new seat for DH's bike? You can each have your own seat and alternate, depending on who's riding. As my DIEP present last year, I bought an upright bike with a fat squishy seat. It's fabulous.
Jeannie - I often have trouble finding the right word too. Somehow my sister always knows exactly what I' saying. (Yay for girls!) . Here's how bad I am with words. I just realized that 'Holeinone' is hole-in-one. JUST realized it. I've been reading the name for a while, and I thought it was an English version of 'Heloise'. Damn. I used to be so smart.
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I definitely feel like I've gotten stupider. Remembering names and faces? I embarrass myself regularly having to be re-introduced to someone I've met 3 times. When I'm working on the computer, I open a folder, pause to remember why, open the subfolder, pause to remember why, open a file, pause to remember why...ad nauseum.
A book I read about chemo brain said the pausing is due to deficits in the "executive function" of the brain. The memory is intact, but it's like a file cabinet with all the files out of order...it takes longer to find what I'm looking for. Sometimes that works for me with faces...if I stare at someone long enough, sometimes I remember the name...or sometimes I just creep them out. :-/
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I compare my brain to a computer that is frozen. I just can't retrieve what is there.
However, aren't we lucky to have Google? My memory is gone but I can google
just about anything.
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cfdr: LOL! Sounds familiar!0 -
I've been walking into doorways and the occasional wall since WAY before chemo. Can't blame my lack of ability to put names to faces on chemo, either.
I do feel just generally less "sharp" than I used to be, although one would think from reading the first paragraph that I was never especially sharp to begin with. Hmm.
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Janet,
Yes, I need to take the bike ( it was an expensive one ) to the bike shop and make sure I get one that we can swap out. I have a old comfy seat, from a cruiser bike but you cannot get it to adjust. I will make that a goal for next week, as our weather is supposed to be in the high 70s.
Talk about getting stupider...twice in the last month I have poured orange juice in my coffee. I grab the carton, don't look and chit, tried to drink it last time...no way
Also, for several weeks I was putting laundry soap in the softener dispenser, and the softener where the soap should go....
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Holeinone -
Coffee and orange juice! Gross.
Here's my stupid thing of the day. This happened last week. I had bag carrying a jar of change that I was taking to the bank to put into their change machine. $157 worth of coins. So I parked my car on the street, and realized that I had to pay for parking - and needed some money for the meter. So I went through my wallet and couldn't find any coins. So I went back to the car, and dug around in various compartments to see if I could find any quarters. I couldn't. So I got back in my car, with my change jar, and the intention of moving my car to the bank parking lot. It was only then that I made my connection between my hundreds of coins in my bag and the parking meter.
And apparently - I can't even spell helmet anymore!
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Janet_M: Dumb?~ No HILARIOUS? ~ Yes0 -
Janet, I have one of those bikes, too! Not cool here in Seattle but I am so beyond that, anyway....
Today I was on my way to a meeting and I was congratulating myself that I would be arriving on time. Then I promptly drove right by the meeting place. Recognizing my mistake, I almost caused a fender-bender and drove over a curb in my efforts to correct my mistake. Yep, I was the last to arrive.
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Where does my mind GO when stuff like that happens? I have no idea what I was thinking about.
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Oh Jeannie - I can just picture it. And I'm having a chuckle at your expense. Not laughing at you though - I'm laughing with you. (You are laughing, aren't you?)
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I just had a long talk with someone at the American Cancer Society. They have a wonderful service.
You can ask questions of an onco nurse too.
So I asked about chemo brain and she sent me some info.
She said: the cancer can cause problems with the brain
the anxiety can
the lack of estrogen can
the chemo can
lack of sleep can
In other words, they don't really understand it. At least that's what I gather from that. When there are 20 different causes, generally, I don't think they know how it works exactly.
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