Why was I stronger DURING treatment than I am now?
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Winter, I have stopped reading about endometrial cancer and breast cancer. There are a lot of horror stories. I think the people who have it easy don't write as much. In fact, that's why I travel to New York. I read a few horror stories about radiation treatments. But so far I have no side effects except for fatigue. Either way, those stories can curl your hair and my hair is already too curly!
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Janet, that was bitchy wasn't it? Sometimes I give the benefit of the doubt too much. You know how email can sometimes be.
But she is a bitch. I'm glad she's moving away!
About fatigue.... After this last radiation treatment, I had to sit down. It's such a wave that overcomes you. So I asked the nurse, "what is causing this fatigue?" She said "oh, it's just that it's over, it's a let down of relief". Now this nurse sees patients all day long. How could she say, basically, it's all in your head? The whole treatment is only 7 minutes. If anything I think I would feel elated that it's over. Then, when walking out, I overheard another patient ask "What is this fatigue?" The same nurse said "Oh, it's part real and part mental". I wanted to interrupt and tell that woman that it's ALL real!
I went back to the motel and curled up in bed, hugging a pillow. It felt like heaven. I asked my husband to leave...go have fun...and I just lied there, not moving, not reading, not watching tv for over 2 hours. After that I came back to life.
I realized that last trip I had been pushing so hard because I felt bad for my husband who had tons of energy and wanted to go, go, go. My point is, all of the poisons, all of the radiation, the surgeries, and probably the cancer too, all take such a toll and that's why we are the ones who understand, and no one else!
After my surgery, they had emphasized walking so much that I pushed on the treadmill. I wanted to get well and fast.
But then I felt awful afterwards. I told the surgeon and he said "Listen to your body! The incisions are small but the operation is big". Just two months ago!
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Holy effin shit, timbuk! that divider and conQueror has got to go! my mother is the same way, she is almost 80, and impossible. it has really caused some crap in our family, and now she is really depressed, but does not want to do anything about it. she goes to me, lucky thing you moved away! but the stress of being intimately involved with my fam was 2 much, and plus, i do have a pretty good man now. no talking to her, i love her, but. you deserve peace and quietude, & let them come to you.
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tim get rid of the great betrayer.......i am fuming here, how totally disloyal and dishonest......you deserve better, he is TOXIC
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I need his insurance. I have a lot to figure out.
Now I have an infection in my foot and the dr put me on antibiotics. With few nodes infections are dangerous, as you guys know.
They moved up my onco app to Monday. Had I known I would never have come home. But at least, hopefully, by Tuesday I should be done. Unless they decide on chemo.
I slept a llll day.
Thanks for the support. Living with him has been hell. He can be so wonderful and kind and loving but there is always something up his sleeve. My counselor told me, before I got sick again, that he was going to make me sick, no one can
survive this constant misery.
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No but I understand your position........sounds like he really is one of those sociopaths whjo live next door types....but take your time and make sure you are set up in a way that supports your health and do think carefully about chemo as it will deplete you more and the possible benefits may not be worth the hassle (thats a spanish phrase they use a lot here)
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He actually had a personality test, years ago, the MMPI. He was a narcissist, a step down from sociopath but in the neighborhood. It actually said "this type of personality cannot have a good marriage because they don't experience guilt or empathy." That's exactly it because even when he showed me the photo, he didn't seem ashamed, he didn't take it to heart.
But he will turn on a dime and be a prince when he wants to.
Basically, I'm stuck. I have no one else really and I'm financially dependent.
We were in counseling for about a year and the counselor seemed to help, he stopped lying to me (I think). But the counselor said I was stuck.
And you are so right, anyone who is physically incapacitated is truly stuck.
Question: do you think I should tell my son? It kills me that my husband gave the impression that I refused to go to my granddaughter's party. I told my husband I would, I was tired of covering for him. But I'm afraid it will make my very tenuous relationship with my son break.
Anyway, I was so exhausted yesterday I slept almost non stop from 3 PM until this morning ...9 am. Maybe I shouldn't make any decisions when I'm in this state. I told him I did not want to return to New York with him ...sigh...but that means I'll have to lift suitcases, etc.
Either way, I do feel calmer now. The problem with Xanax, I've been told, is when you come off of it things seem worse. I think that happened yesterday, I really lost it.
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Well, i found out why that friend was so insistent! She had bought two Group ons and one expires on April 15! I told her to find someone else to go with her, I can't even buy green bananas anymore. Someone once told me that when things don't make sense it's usually money that is the explanation. So true!
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Tim, how's it going? Should of checked in before now, I happened to see your post 9 days ago, my heart broke for you, was trying to say something meaningful, and you deleted that post. Yes, we have all been there, sometimes daily.
Have you been to NYC & back? The situation with your son is sensitive for sure. I would want to reach out to him, and try for a fresh start.
I am getting a Zometa infusion on Thursday...nervous for some reason, I guess cause some ladies have bad bone pain. I pushed for this & might have to pay out of pocket...
Hello to all, things are kinda quiet here, hope that means everyone is busy & feel decent...
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I never know when to be happy, or worried, when this thread goes quiet. I like to think that everyone is finding their footing and moving on - but I know from experience that sometimes we all just need quiet time under a duvet.
Tim - How's it going with you?
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It has been quiet lately on this thread. I can only speak for myself in saying that in part it is because I am busy but I am also struggling a bit lately.
As always I need to hear some experience, strength and hope from all of you.
I am coming up on the two year anniversary of my diagnosis next month and I am thinking it is in part why I am so squarely lately. I just feel anxious and scattered again. Like the chemo brain is back in full force but this time it is more just feeling scattered and unable to focus. Which is actually a lot like what chemo brain was like too. (See, I am not even making sense).
Anyway, I just wanted to tell on myself and see what others experience with the anniversary of their diagnosis was like. Last year I had my final reconstruction surgery at that time so I think I was so absorbed with that I didn't really pay attention. Anyway, I have been thinking about it a lot lately and also feeling like it is two years later and I still feel sometimes like it is all so fresh and so a part of my life at times still.
Not always, I had a few months this winter where I wasn't feeling that way so much anymore but lately that is not the case.
Hope all of you are doing well.
Take care,
Julieho
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Hey juleho. good post. its good that you are coming up on two year anniversary. and so i looked to see what pill you were taking, then noticed afresh that you dont have to! cause i was going to blame chemo brain feeling on em. so now i am wondering if that is something that just happens around the two year mark, regardless of anti-hormonal therapy. and i am thinking maybe yes, cause mostly we feel a little better, after active treatment, and just wear ourselves out more quickly than pre-bc. or maybe we can blame it on spring. i am blaming mine on a little bitty brownie.(small treat, every once in a while.)and i am happier, more productive but when the bed calls, get outta my way! then after lying there and reading or whatever for a quarter of an hour, i seem to recharge my batteries for another 45 mins of activity.it goes on like that all day, and i seem to worry about it less when i just go with the flow, and not worry too much about tasks that demand a great deal of concentration, i will just tackle them to the extent of my concentration, then come back to it again later. the great thing for me about doing it that way, is, first it seems to me that i am getting NOTHING done, then 5-6 hours later, i look around, and it seems like SEVERAL things have magically gotten done, all @ once!
in august, it will be two years for me, surgery date, when it was OUT! yeah, i love this topic, too.
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Julie,
I don't really notice the anniversaries except for my finally-done-with-chemo anniversary, which happens to fall on Dec. 30, so when I celebrate the new year now, it is also celebrating another year of survival, and the hope for a cancer-free and fatigue-free year ahead. My chemo brain was really bad the first year; it is a lot better now but I still get flashes of it, especially when I'm also feeling fatigued. I used to be a very focused and self-motivated and self-disciplined person, now I'm pretty scattered a lot of the time. I dick around on facebook and play candy crush saga when I should be working. I used to work 10 hours at a stretch, including while I was eating lunch at my desk. Not any more.
Kathec has great advice: do what you can, when you can. One downside, for me, of living in the moment is not acknowledging that this moment won't last forever. If I feel good one day, I assume I'll never have another bad day, so when the bad day comes, I'm crushed. If I have a bad day, I feel like I'll always feel that way, and my brain will never clear enough for me to get through the project I'm neglecting. And yet if I look at it, I realize that somehow things got done the last couple of years (OK, my husband did a LOT of cooking and even some cleaning, and has carried a lot of the financial burden).
I also find, as Kathec says, that it is much easier to wear myself out. I find I do much better with a predictable schedule: a late night, or a weekend away, and I'm all discombobulated. I'm also beginning to find that 30 minutes of vigorous exercise, although it's more exhausting immediately after, results in less long-term fatigue than a 90 minute hike or several hours of yard work.
One thing I *wish* happened to me is the battery-recharging rest. Kathec, I'm jealous! I find that once I start feeling pooped, I'm done for the day. I can take a rest, but the energy doesn't return. Sometimes I just take my laptop and work lying down on the sofa, and can eke out another hour or two of work that way.
Speaking of anniversaries, I'm coming up on the anniversary of that first dreadful mammogram. Four days ago is the anniversary of my mother's death; the mammo a month later was one of my first my-life-is-getting-back-to-normal-now appointments. So much for "normal"!
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I am sorry you guys are feeling the fatigue but it is reassuring to know I'm not alone. I just can't seem to find my stamina. It's been two years since my bmx. I am working out regularly at the Y but I can't really see much improvement. I am doing all kinds of things there--Zumba, the pool, elliptical, treadmill, recumbent bike, free weights (light). I come home and just crash for the rest of the day. The vigorous exercise (except for the couple Zumbas I did) is only for half an hour. And my brain...I am so forgetful and often say stupid things. I attribute it all to treatment, reconstructive surgeries, Tamoxifen and stress, but I don't really know...
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Jeannie I get feeling some comfort in knowing you are not the only one who still feels fatigued. It is interesting to see how we all respond to treatment a bit differently but so many of us don't just "bounce back". It is gradual and seems to, at least for me, be a roller coaster ride.
I have been really tired lately and feeling a bit down but I also know from earlier times that this will likely pass.
I just wanted to let you know I understand what you are experiencing and hope we will gradually improve and regain energy over time.
Hope everyone else is doing okay.
Take care - Julieho
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I just discovered something called HabitRPG. It's a productivity tool--a way of keeping to-do lists--but it's set up like a role-playing game, where you can earn gold and silver for completing tasks, or lose them for indulging in bad habits. And you can set yourself rewards, so for instance, so many gold pieces earns you a piece of chocolate or a favorite TV show. There are also "guilds" and "parties" where groups of players can chat and set group challenges. My avatar is "Surviving" if anyone else wants to play along!
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Have any of you found that the slightest physical setback knocks your down? If I get a bad night's sleep, I feel like I pulled an all-nighter. If I get the sniffles, I feel like I have the flu. It's like my body has become this histrionic drama queen, getting all bent out of shape at the slightest offense. Here I am trying to practice mindfulness and be all calm and serene, and my body just will not cooperate.
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cfdr, I know what you mean but for me, it's emotions. I feel like I'm walking near a cliff sometimes and it doesn't take much to feel like I might fall over the edge. Not jump over the edge, no worries, just trip and fall!
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I think for me my mind follows my body. Today is a gorgeous day and I walked 2 miles in the forest.
I feel calm and happy in spite of the aches and pains. I really think getting out of the house and getting excercize is so important...for everything. I know it's hard, I have a lot of pain. But amazingly, less pain today than yesterday when I did my first walk.
It's as though the stress hormones that normally go to worry, are diverted to moving my muscles.
And it cuts the chance of recurrence and makes us stronger. And strength ...that's what we all need!
I just got some palpitations!
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...i agree, timbuk, & i love to walk! walking in the city is a whole different animal than walking in a forest, that sounds so lovely. i lived for a year in the mountains once, off grid and everything, and it was very bracing and dear to me and freeing to walk outside and no one would see me! chopped and dragged firewood and everything, and cooked on a wood stove. it was the year of the winter olympics in japan, i remember, because we would have the tv on for an hour or two each night as a treat. the propane tank would run the generator, which would power the tv and a light or two each night- early to bed! and up early too. so quiet,and amazingly beautiful on my daily morning walk. i still love to walk, but have to convince myself to go, and am usually very happy when i do. Now there is architecture, and houses nestled into hills, all kinds of different plants and trees to look at, and people walking their dogs! am getting to know quite a few of them! but noisier and stinkier than where you are! but for that little while, i forget about myself, and what might hurt that day, and i take my camera.
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Cfdr: I am with
you! Especially if I don’t sleep well or
in the wrong position as well! I had a
day last week I thought, hey, I am feeling pretty good. I woke up and my shoulder was killing
me. I couldn’t lift to touch my opposite
shoulder. It still is sore but
better. Yesterday I look down at work and
there is a red mark on my inner wrist the size of a quarter. I put a Band-Aid on it. If I went to the Doc with each symptom that pops up I
would need to rent out a room with a cot.Jeannie57: Sitting at
my desk at work I put on my headphones and listened to the song “Hey Brother”
by Avicii. I just love this song. I started bawling (albeit quietly) for the
longest time. Sent my brother a text
telling him I loved him. Grabbed some
tissues and listened to it about 15 times and allowed myself to give into the
feeling.When I am riding one of these rollercoaster days, I try to
remember that my body AND mind are continuing to heal and deal with all that
has taken place.Tim: I would LOVE to
walk with you in the forest. Just the
thought of that relaxes my whole mood today.
You are right; being outside is very important. Sometimes it takes everything I have to get
out the door on the weekends. Walk on
Tim and Kathec.Warm and loving hugs to each one of you.
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Hi Ladies...
I am one year, 04/22/13, from discovery, to biopsy, to BMX w/3 different kinds of c. Onto, chemo for the next few months. Began Tamoxifen, blah, blah...All that went fairly well....if only superficially...Because-
Now I find myself teetering on the verge of a nervous breakdown. The EMOTION button is on overload I guess. I cry at the drop of a hat; I am having trouble trying to keep weight on as I have no appetite; *( lost abt. 8+lb in the last 6-8wks.) No drive, no energy...just an endless fawcet of tears and such.
I am bothered by this, because I am normally sound-minded. Not so damn touchy and forgetful etc...
Has anyone felt like they are 'losing it' after all this time? Screw this! I don't work that way...never have...and I DO NOT like what I am turning into! It's not because I no longer have bodyparts, although I have addressed the 'mourning' if you will, at their loss... Anyhoo, THEN I can turn on a dime. This is BS, and I worry sometimes... I don't really have a person or way of getting support, other than constant prayer and the prayers of others.
It's a cycle that I am not prepared for, you know? Just how freakin 'normal' IS this?
Hi to my sisters....I have missed you all so very much!!!
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It's very normal. You have been through the year from hell. Emotionally, physically, mentally. You've gone through all the tests, treatments, appointments, people looking after you.
And the wonderful day came you realized you didn't have to be anywhere to be poked or tested. And don't know how to deal with that. So you start processing and healing the best you can. Your friends think your done! Par-Tay! But you're not ready, maybe never.
This really changes you. You may find yourself not wanting to see certain people ever again. It happens. Crying over "nothing". See if there is a therapist at your cancer center. Talk to your MO, maybe a short round of meds can help. And all the sisters here at BCO are more than willing to lend an ear and tissues.
Your feelings are normal, and should not be dismissed. Please come back, we care.
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Well said spookie. I think we've all been there.
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alve4five - sadly itsall too normal after treatment, i hit rock bottom, was finally diagnosed wuth post traumatic stress due to the way I was treated, still having therapy one year on
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Lily, how were you treated?
I think all of this has to cause post traumatic stress! The whole thing is very traumatic.
Here I am up at almost 3 am again. Starting TC chemo on Monday for the endometrial cancer.
So, so frightened. Scared of this new chemo. Will I need a port? Will I throw up? Will I ever be ok again, after two kinds of chemo, etc.
But then there's the looming cancer fear. How is it that they basically told me I was "cured" and now they tell me I'm at high intermediate risk for recurrence? Even after chemo, if I am able to complete it,
I'll have a 14% chance of recurrence. I'm not a risk taker. Life is full of risk and somehow I'm going to
have to learn to accept and adjust. They weren't kidding when they said old age isn't for sissies!
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Tim - inhumanely in my opinion. I was told i had cancer just before Easter and it was serious, doctor fast tracked "to save me a day" . Then no one contacted me as it was Easter.......after two weeks i had an appt with a surgeon, who told me i should not be there as no one had done a biopsy! I was then referred for biopsy, but told chemo was inevitable. Waited for biopsy but when this was done they gave me a pneumothorax and i could not breathe. Emergency admission, sadistic doctor said i needed a drain to remove air. He put local anaes needle in, immediately he removed it he cut me. I screamed and he made a racist comment to his colleague about my nationality being weaklings and not brave. No one gave me food or explained anything to me just forced me to sit up 24 hours a day, no sleep for 3 days as ward had well over twenty other patients in it and dementia ones yelled all night, staff responded by tying them to their beds. I was not allowed to leave the bed or lie down ........
When i was told i had cancer i was told it was advanced and very high risk of recurrence. I did not see the oncologist myself at all, surgeon discussed me with him then told me what he said. This was the protocol.......i wanted time to consider chemo so they did surgery first. I had to share a room for surgery, and there was no privacy.
After ten weeks i saw the oncologist who did not even have the manners to look at me, would not explain ordiscuss anything just told me his plan over and over again. During this first appt several people came in to chat to the nurse or to him, nothing connected to me at all. Again no privacy, i left feeling totally depressed and flew to London where i paid for a second opinion and was finally treated like a person with sensitivities and a brain.
Legally i was entitled to immed recon but they refused any surgery other than MRM saying nothing else was suitable.....no negotiation......the surgeon himself was as nice as possible and he did listen to my questions but he was the only one who did.
I made an official complaint about the way I was treated by everyone except him
Part two - rads - although rads doc seemed nice at first when i raised my concerns at lack of privacy on day two of rads he yelled at me pushed his face towards me and said you are very high risk of recurrence and you refused chemo, so are you doing rads or not........I cried my way home every day of rads and i saw every woman before me on the machine so i know they saw me. Rads staff did not even speak for first two weeks of rads even if i said good morning, they were focused on processing me
I sound a real whinger - what do you think of way i was treated? Did i over react?
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Not only don't you sound like a whiner, I think you would be doing a public service by exposing which hospital all of this happened in, I can barely breathe thinking of all you went through! I'm so sorry and only hope that with time this will all recede and be forgotten but I can't imagine how. In the end, you are strong
and will overcome all of this! You make me feel like the whiner!
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Alive4Five - The good news is that you are 'normal', and the bad news is that you are 'normal'. Because normal means having some sort of delayed emotional collapse, months after treatment.
If you reread this thread I think you'd see that there was a pattern. Normally strong, solid woman just turn into a version of themselves that they don't recognize. Easily overwhelmed, teary, unpredictable, and unable to connect in situation that would normally be easy.
What you described is exactly what I went through. (Everything that it except the weight loss). I had zero drive, and no energy. Also, I had a hard time finding pleasure in things. Even getting together with friends for a 'fun' night seemed pointless and too much effort. I had a difficult time feeling interested in anything or anybody, and I found that the most trivial things made me hostile. And like you said - I 'turned on a dime'.
I think there are a bunch of things that happen at this time. The people around you are all happy that 'you're back to normal' when in fact, you are nowhere near. Although the bandages are off, and the hair is growing back, there's so much healing to do on the inside. I almost resented the relief that my family and friends felt. It seemed so selfish - though I know their emotions came only from places that were kind.
Personally I felt that all my components were out of synch. My new brain didn't match my body and I constantly felt uncomfortable in my own skin. My energy was off, my thoughts were inappropriate - and I was just starting to absorb all that I'd been through and it was tearing me apart. During treatment - as many of these woman have said - I was super strong. The general consensus was that I 'sailed through' cancer. That of course, is bullshit. But I did do quite well and I attribute that to the inner warrior that just came out and led the way. And then - she disappeared.
Other women on this thread have said the same thing - (or perhaps I stole it from them). Doesn't matter. There've been many reports of losing the warrior, or the warrior losing her sword . Ultimately, we're left on our own trying to sort things out and piece things back together. And there are no instructions.
I felt like a combination of the Tin Man, and the Scarecrow, but with nobody to hold me up. Terribly fragile on the inside for the longest time, and never knowing if I was moving in the right direction. Even though I looked like I was strong and healthy, the slightest breeze would knock me over. Often I just wanted to be alone because navigating my new self through the world was too hard.
The other good news is that it's temporary. Somehow it just seems to right itself after a few months as you settle into the new you. It might not seem like it right now - but you will get through it. Just don't be too hard on yourself or have too many expectations. You're still healing, and need time.
Cfdr - I can totally relate to the 'slightest setback'. If I don't get enough sleep or exercise I can barely function. I get sick, crabby, forgetful. And forget about stamina. I was never one who craved routine - but now I need it.
I can keep my energy at a good level if I'm careful. But that doesn't allow for late nights or a whole lot of spontaneity. We had our teenage niece for a sleepover last night and had to brace her that I wasn't in for a late night. And I had to wake up early and have my oats/berries/maple syrup. However, we did manage to go out for dinner and I had a couple of glasses of wine, which wasn't too smart - but very delicious - and worth my tiny hangover
Lilly - Holy F*k! Your treatment was horrendous. I am so very sorry that you were handled with such insensitivity. Sounds to me that you were led to battle, when you should have been protected and made to feel safe. You should also have been made to feel like you were part of the team. What you went through was wrong.
I hope that therapy help you be able to accept, and move ahead from what went on. You are absolutely not a whinger.
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Yes, I agree, we are on an emotional roller coaster. I feel like I have left that ride for now but I could jump back on...
I love walking in the city or the forest! Today, I have a cold for the first time in a couple of years. It is really a nuisance. Plantar fasciitis has visited my foot again, too, so I guess it's good timing since I have to rest anyway.
Wishing you all well.
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