Why was I stronger DURING treatment than I am now?
Comments
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Janet - you write so eloquently and I resonate with so much of what you say, this damn disease tarnishes everything and everyone in our lives as everything, absolutely everything, is different as we are and feel different..........I tried telling people but they don´t get it and then I just feel more irritated and isolated......and some days I do wonder if it really is worth all this heartache if I´m going to die of cancer anyway and I have the idea that they only really bother to operate with the first cancer and simply want to do chemo or something for any other cancers and I have another health condition that makes chemo extra risky for me so did not do it
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I thought I'd share a Mary Anne Radmacher quote I received recently:
"speak quietly to yourself & promise there will be better days. whisper gently to yourself and provide assurance that you really are extending your best effort. console your bruised and tender spirit with reminders of many other successes. offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. recognize that on certain days the greatest grace it that the day is over and you get to close your eyes. tomorrow comes more brightly...."
Hugs to you all.
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Purl - That's beautiful. 'Bruised and tender spirit' almost made me cry. So lovely.
Thank you.
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Purl51.
Very moving. I will look up the author.
Hey does this happen to anyone? you are trundling along doing ok'ish and then all of a sudden the breast cancer cloud settles just above your head?
I really hate when it happens like this, it's like for a time there is a feeling of 'normal' and then that reminder comes, the realisation....
It's so hard to shake off that stomach flipping . It 's worse than the 'all day' low mood that I can wake with. I think it's because it gets you unawares...
I am going to have to find a way to manage these feelings, just not sure how to do it.
Any ideas, what do others do?
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Sometimes music helps. Finding something else I can focus on helps. The only problem is: I can't always turn my focus away from the cloud stuff. I do know I have to catch it early to prevent a long, drawn-out spell of it.
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I worked over 6 hours today, first time for I've worked that many hours in a day for a couple of months. My physical energy has finally come back after a year of being physically fatigued, but mentally, I still wear out quickly. I'm setting myself a goal of working 7 hours a day. Didn't quite make it today, but it was a good start. Funny to think how many times in my life people have called me a "workaholic". They wouldn't know me now. I actually felt sharp and focused most of the day, but once I wrapped up the project I was working on, I hit the wall and didn't feel like I could start on anything new.
I have to remind myself that I've come a long way from where I was a year ago...and that a year from now I may look back on this and shake my head at how tired I used to be.Off to have dinner with my offline BC support group. A little face to face is always fun!
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Congratulations cfdr! I am very happy for your progress, and yes, let's hope next year you are fully energized.
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Here's hoping you are having a good day today.
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This was a kinda blah week. I'm guessing with the holidays over and the excitement of shopping and travel over, things start getting back to the same old. I can say that when I was feeling bad about my body, I "talked" with myself about the positive things and how I really do have it good when it comes to how my breasts now look (they are still mine), how my hair has grown back, etc. Finding the positive in some of these things makes life a whole lot easier.
I refuse to let myself slip down into a dark place for things that just aren't worth it. On the other hand, I did take a 5mg Adderall today that I has leftover from last summer :-). Boy does that small little bit help bring back the energy. I have a feeling these will be in my arsenal for an as needed basis the same way I used to take Ativan to relax my mind or help with sleep. I would highly suggest using these responsibly to bring back some focus and energy when you see you might be moving downward.
I hope everyone has a great weekend!
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Are you ADHD Rocky? I sure would like to have something give me energy, get me interested in life, but I'm not ADHD. The one med that did help me is being taken away from me. Shrinks! Apparently they never heard the "First do no harm" thing.
You have a great weekend too.
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Dunesleeper, no I am not ADHD. Medications don't sit very well with me and back in the summer I tried an anti-depressant when I was hitting rock bottom. The problem was that the meds were causing side effects and after two weeks, I was getting worse not better. My husband is ADHD and had tried Adderall XR so there were 25mg pills in our cabinet. In my desperation, I separated the time release pill into three sections and took the 7.5mg and found I started to feel better. Around that time I was reading some Stage IV threads and found that some of the ladies were using Adderal and similar pills to increase their energy and mood.
I told my doctor at that time that the small amount of Adderal helped and she was totally on board and wrote me a script for 5mg pills. I took the pills for about 2 weeks and once I felt like my mood had improved I stopped. The med was just a sort of kick start and then my own natural chemicals kicked back in. Personally, I think if someone knows their body well enough and can take certain meds as needed then they know best. Since I had been feeling a bit off for a few days, I figured that I would try to nip it in the bud and that is why I took one today. It definitely helped. I had some decisions to make that were much easier having taken the drug and I feel much more like myself this evening.
What medicine did they take away from you and why if it was helping?
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Rocky, it's great when you find something that helps.
Xanax. And she doesn't feel "comfortable" with it.
I don't exactly feel comfortable with her taking it away right now.
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Dunesleeper....how are you....sorry I have been a little preoccupied this week....went for my first mammo and u/s since dx. Now I play the waiting game until next Wed. When I get my results. I am a teacher and OMG, this week was a disaster......I was making so many errors on exercises I was giving out....etc etc....my students were bringing me up short all the time.....lol...
Always thinking about you though....❤0 -
Oh Scottiee! i know what you mean. Your students must be loving it.
I had my ultrasound Monday. I have to go back in 6 months. They found a couple of cysts that they want to follow up on in the other breast. Lovely! I feel like acting out Robot's "Danger Will Robinson Danger Danger." lol You know? How he flings his arms around and twists and turns while he says that? Actually, doing that feels better than holding it in and worrying.
Let me know what your results are. I'll be thinking about you.
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Dunesleeper.....my u/s is for the same thing. My BS found a cluster of cysts next to my tumour site, but she said it is nothing , just to have an u/s every six months to be sure.
The mammo , well you know what that's for.....get my results on Wed. Will let you know.0 -
I finally got somebody to talk to, somebody to hug, yesterday. It enabled me to open up to some of the stuff that has been bothering me. In speaking, I found myself saying a lot about feeling unsupported, about the conventional doctors making me feel like I am a walking dead person, about the conventional screening people trying to make me feel like I am stupid for choosing options other than mammogram, about feeling like I cannot talk about my unconventional choices for fear of either being put down by the conventional treatment people or for fear of making them doubt their own choices. There is nothing worse than causing a person to doubt their own choices. However, I could get support from alternative people. While I was working, I could not do it. When I first retired and was only getting $700 a month, I could not do it. But now, even though I cannot afford it often, I actually CAN go for acupuncture, Reiki, or Zero Balancing -- and get the support I need to help put an end to this constant fear.
I just needed to be able to talk to a non-judgmental person. Damn!
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Dunesleeper - I echo what you say as I also refused chemo and all I hear from doctors is I am very high risk of recurrence - well I don´t agree as I know my body and have lived with it a lot longer than them and cancer is an individual disease right? I cannot refuse mammogram as its the only screening they will offer me yet I think its pointless as did not show my stage 3 lobular cancer!!
However I now am feeling very vulnerable, been waiting for an appt with Oncology since november and still not been offered one and think they are just not bothering with me now as I refused chemo but had mutilating surgery (breast was mis-shapen and painful and I could feel the tumoration but still no lumps) and radiotherapy..and radiotherapy has left me with a LOT of problems and constant pain at a low wearing level, hormones too I think are affecting me as I feel like I am wading through treacle all the time - am a very oestrogen dominant person or I was.....
I am having a thermogram done next month which I have to pay for myself but maybe we can friend up on here? I am sure you could teach me a lot about your diet and isn´t the laternative or complementary section on here any support to you?
Hang in there.....
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I started a separate topic for this post but think maybe it belongs on here more...
I am really struggling again - stopped taking the homoeopathic pills as was only a fixed time course and starting to feel worse again plus not sleeping for long chunks......constantly feel exhausted and everything is a huge effort, started counselling but not finding it that helpful as was sent away last time to write answers to questions that if I knew the answers to would not need counselling!!!!! Tried anti deps, make me worse, tried valium started to get panicky after a couple of weeks so stopped them, cannot enjoy anything, even food or drink I used to like does not give me any sense of enjoyment or fulfilment and i force myself to eat for hunger rather than look forward to anything....
I believe in the Secret type energy whereby what you think you attract and yet I find myself constantly feeling that my life is over (I was stage IIIA diagnosed April 2012 and refused chemo for other health reasons). I am on letrozole and have been for 7 months now, wondering if it is that making me feel like this? So now on top I think well if i am thinking this i will attract it yet another part of me does not care if I do as I hate being like this and no longer feel like me at all....... I am someone who always had lots of oestrogen - fibroids, endometriosis, awful period pains etc, culminating in a hysterectomy for enormous fibroids in the end so I do wonder if it is the lack of available oestrogen - any ideas anyone? Or feeling the same?
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Hi Lily. Yeah, I'd love to friend up. My oncologist continues to see me, though she is unhappy with my choice. I wanted thermogram. She would not accept that. She said she would "settle for ultrasound." Then the ultrasound technician berates me for using US to screen for recurrence, saying it is not a screening tool and that the amount of radiation in mammograms is "minimal." I wish people who worked in the field would read something other than the propaganda spoon-fed them.
The alternative threads are not great places to be around here. The conventional people feel it is their moral imperative to come there and tell us how we are going to die because of not doing things the way they do them. Then it ends up being a big argument. It gets repeated time and time again.
I think hormones are affecting me too. I have never been such a cry baby. I can't take a shower anymore without crying. I cry lots of other times too, but it seems to be impossible to take a shower without crying before it is over. LOL
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I should probably be posting in this thread. I have constant pain that is dragging me down and is a constant reminder of cancer.
I am not suicidal, but I wish I was dead. I no longer care about anything that used to be important to me. I find no joy at all in life, and find it all completely pointless.
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Hi Cottontail - yes it just sucks doesn´t it? It is the constant reminder for me that gets me down and I just feel so abnormal...but there are lots of people on here who understand and most seem to agree it does get better but you are about the same way along as me, 9 to 10 months or so...... so I think it must be early days for us, I am sure it is the hormones that make a difference for me as I am happoier with lots of oestrogen.........(except it gives me cancer ha ha.....not)
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Hi Ladies.....was going to respond and say hi to Dunesleeper, but I see more of you are in a place I was.....I have told my story many times. This summer was the summer from hell for me. If it were not for my two wonderful sons, I'm not sure I would be here now.
I tried to become vegan, I exercised every day until I hurt, I researched until my eyes
crossed, talked to a therapist..etc etc etc...I got to the point where I lost so much weight,
was vomiting every day, nauseated every day , couldn't eat. It culminated in family and friends practically dragging me to the hospital. I thought about my sons, and took myself off to my GP who immediately put me on meds....they have saved my life.....I am more moderate in my eating habits, still organic, no dairy, only wild salmon, organic chix,
nuts, seeds fresh fruits and veggies, supplements, wheatgrass . I am so much better
now. I am not advocating meds, but I say, if you need them for a time to get you over this
Hump.....go for it.....it's called QOL.....please gals.....speak with your doctor.0 -
Scottiee1: Just curious. The QOL is the pharmacy company, but what is the actual med that helped you feel more like you? Thank you for sharing.
I would rather not take meds (who would prefer them?) but i don't want to feel this sad/mad for the rest of my days either. I think the withdrawals when one stops is what has concerned me as well as any weight gain, but these concerns are becoming less important.
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Hang in there Cottontail. You are not alone.
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Purl51....QOL means quality of life. I never took meds before either, didn't believe in them, but I really don't care now. If they give me more good days than bad, make me
not think about BC all the time....I'm in!!!!! BTW I am on Zoloft plus an anti-anxiety med
when needed.0 -
I second that opinion. I need my medications (antidepressants) and right now pain med. Pain makes me unable to tolerate the day to day life even when the pain is not real severe but constant aches all over. Do what is needed for now, it doens't mean we will be doing the same thing forever.
Sheryl
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Purl51 -
I agree with you about the meds. I prefer not to take them. But my personal feeling is that constant stress, sadness, and depression can wear a body down as well - and it's difficult to make desicions when you're depressed. Things that are good for you - like laughing, being productive, and excercising are pretty friggin' hard when you've go the deep dark blues.
Twenty years ago I was prescribed Zoloft for anxiety. I hated it! I became pretty even (mentally) but I missed the highs that come from working throught the lows. So these days, my drug of choice is atavin/Lorazepam. It's the one that keeps me from being a basket case. I take it very sparingly, but if I'm feeling anxious, or sleepless, I take half a pill. Or - if I start thinking about my upcoming surgery and get too tense to funcition, I take half a pill.
I agree with Rocky - sometimes your body needs a kick start before your own chemicals kick in. I'm also trying to train myself to think about scarey things without panicing, and if that requires a mild sedative - so be it.
I've spent a lot of time in basketcaseland over the last 14 months, so anything that can give me a leg up is welcome. My body needs a break from being constanly on guard, so I'm happy to be a mild pill popper while I navigate these waters.
Good luck. I know how tough it is to find solutions.
Janet
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I had to beg my BS for anti-anxiety meds when she gave me my diagnosis, and even then the Rx was only for 20 of the lowest dose available, no refills. I had to beg her again for extra pain pills when my drain site was infected. Again, I got very few of those.
(My MO is also very judgmental and almost wouldn't extend my Rx for gabapentin for the neuropathy I still have, and almost wouldn't give me an Rx for something to help me sleep.)
I have little hope that asking for something to help with depression or anxiety, now that I'm "well" would really do me much good.
I was vegetarian for two years pre-bc, and went vegan this year for New Years. That is for ethical rather than health reasons, though.
I eat almost nothing now. I do get hungry, but feel full almost instantly. I have to pretty much force myself to eat regular meals, but if my blood sugar didn't tend to be on the low side I probably wouldn't bother. I thought my stomach had shrunk, as I could eat very little during chemo, but a friend suggested I could have gastritis from all the pain meds I take. It's quite possible, but I can't afford to see a doctor about it.
I managed to maintain my weight through chemo because the times I lost weight were the times my SE's were the worst. I lost five pounds during rads, as I went over my lunch break and didn't have time to eat anything more than a peanut butter sandwich for lunch while I was driving. Since rads ended right before Thanksgiving, I've lost eleven pounds.0 -
Cottontail......FIND a new doctor....WTH....you are in pain.....as if a BC dx is not enough....you have to spend your days in debilitating pain!!!!! Please, please try to find
a new more compassionate doctor. Many gals on this site have done just that....it's your body.....you know it best. You should not have to be dealing with these morons that call themselves doctors. Do you have a GP??? Can you start there? That's who gives me my meds.0 -
Cottontail, speak to your primary doctor ... That is who gave me my meds.
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