Why was I stronger DURING treatment than I am now?
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jeannie, was that cause of the stroke in your eye from the tamox? are you still doing it? i am so sorry sweetie.
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Thanks you guys! I don't feel like any kind of hero, believe me. What can you do?? That picture was taken during chemo. I cut my hair but didn't lose it.No, the "stroke" is a bit of a misnomer, no clots or bleeding involved. No relation to chemo or surgery that they know of. My optic nerve mysteriously swelled and damaged my optic disk. Apparently the anatomy (small) of those two things increases risk which is why my other eye is at risk, too. sigh.
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Thank you for the kind responses. I think I am headed into what I am starting to recognize as some kind of cycle. I have started keeping a calendar of the mood swings and how bad they get. Today I put myself in time out for awhile when I started to escalate. It seemed to help.
I was also cleared for my flu shot and finally got it today - at which point the nursing staff let me know that it would be best for me to now just avoid public places for the next couple of weeks as the vaccine takes time to work and I am high risk. Ugh. I am starting to feel like a hermit!
Looking forward to an inspired and productive day tomorrow. Wish me luck!
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Good luck Flutter!
I'm having a meltdown right now. I made an appointment with a shrink for Tuesday. I'm ready for meds.
It's been over a month with my husband and daughter at home. The weather in Chicago made it impossible to go out.
We got along amazingly well. But the other shoe dropped as it always does and now I can't sleep, I have no peace.
It's not about any one thing, just a lifetime of things.
I had my d & C Tuesday. I wasn't scared because I was hoping I would not wake up. But I did wake up and when I saw my husband sitting next to me...I realized that it's living that is hard, not dying.
I'm supposed to hear from pathology on Monday. the dr thought everything looked good, they removed a polyp.
I stopped taking Anastrazole in December and now all of the pains are gone. I should be happy.
But my husband always does me in. If I wrote what it is about it would sound petty. But it's a lifetime of emotional blackmail that I just can't handle anymore.
Maybe it's all of this illness and trauma but I just feel like enough is enough and if I'm going to live I want it to be good, not just more endless misery and conflict. I have nowhere to go....
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Flutter - Welcome to this group. It's a fabulous group of ex-warriors who have laid down their swords, and seem to have forgotten where they put them. In the time is takes to rebuild yourself, you will find your weapons, and realize that you don't need them. It's a long, scary, fragile, surprising frustrating process, but once you're though it ( and you will be) your whole self will be strong, and full, and amazingly capable.
And I agree with your husband and your daughter. You are being too too hard on yourself. Your expectation is probably to pick up where you left off before you diagnosis. After all - you smiled through treatment and that is the hardest part. Or so they say. For me, treatment was a cakewalk compared to to post treatment blues. At least there was a plan, and an end date to chemo & radiation. And we could jump into action. But the post treatment is invisible, and it just creeps up out of nowhere and drags us down into the ugly muck. So don't expect that you should bounce back right away. Your hair will grow back, and your nails will get stronger, but inside you are probably just a house of cards who needs to take teensy tiny steps in order not to fall apart. At least that's my experience.
Rabbit, who started this thread, wrote that she kicked ass during treatment but now her emotions were all over the place. I related immediately when I read that, and I was so relieved, because I could feel myself sinking. I wanted to be celebrating being alive, but instead I was going on long walks with my dog and didn't realize I was crying until people started looking at me. But I just walked because I didn't know what else to do. I didn't want to be home, and I didn't want to be with friends. I just didn't fit in anywhere and what made it even tougher was that my friends and family were so relieved that I was healthy and 'back to normal' when I was about as far from normal as I could ever be. Inside I was a mess. And I still can't explain it. My body and my brain simply weren't working together anymore. All the parts of my body that were once such an excellent machine were all functioning out of synch, and I wasn't comfortable in my own skin. Small tasks could be overwhelming. Socializing was tough 'cus I was too distracted or just didn't care about all the trivial things that people were talking about - it was hard to be interested in someone else's life.
Your daughter is probably right that you're pushing your recovery. Having said that - I don't know that there was a proper timeline. Judging by the stories from the other ladies on this board, you're pretty much on track for becoming a basket case. It seems to happen during the year following treatment and affects us, even if we're not emotional people. I'm pretty even keel by the way - so it was a shock for me to have such crazy unexpected reactions to things. It was even more of a shock for my partner, who was used to me being the sane one. Ha! What kind of sane person puts her wig on crooked, and throws a box of cereal at her partners head to make him stop talking and then falls down sobbing on the kitchen floor?
Looking back now I feel that it was all part of being rebuilt. And for me to rebuild I had to bust completely wide open and somehow allow myself to absorb all that had happened and make room for the emotions that are part of the 'new me' , while tearing apart the old me and unloading the bits and pieces that didn't belong any more. It was such an unconscious process of trial and error and taking little baby steps, and having meltdowns, and taking larger steps, and falling over, and slowly slowly starting to feel steady on my feet. Today I feel great, and even though that time in my life was intensely painful, I think it was necessary for me and I really feel rock solid in my core. I still get upset sometimes, and feel blindsided by the chain of events, but I no longer feel any despair or confusion.
You will feel pretty again. And you will eventually feel like your smiling is coming from your heart, and not something that you have to plaster on in public. Your hair will have it's own crazy 'journey' (I hate that word) and will do whatever it wants for the next few years, until it becomes beautiful again.
Your education, and your business are still in your future, so don't worry about that. If you want them, you will have them, even if it's not as soon as you want. Take some time to be kind to yourself, and let yourself off the hook if things don't go according to plan. You are still healing. And this kind of healing is lonely because it comes from such a deep mysterious place. So be patient. And listen to your husband - you are still beautiful.
Janet
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Jeannie - You've always been such a bright light for us. And an inspiration. If I had a gratitude journal, you would be in it.
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I have been doing pretty well, positive and good energy since school started. This despite the fact that I hurt every single morning and it is several hours before I loosen up and feel better (tho still back/hips are tight.) I've been going to jazzercise, a pilates class, walking (as well as working 10 hour days at school.)
I had a crappy night's sleep Weds- from back and shoulder pain. When I awoke I thought- I'm sick of feeling like this, my body hurting sucks. I've been on 3 diff AIs and am now on Tamoxifen. That probably is a factor, even though it is better than Aromasin was. Yet I have to take it. So Thursday I just went through the motions, did not feel like myself at all. Got into bed at 6 pm, and took advil and ativan to get a night's sleep without being aware of pain. Which I did. So I guess I should be glad.
Can I do that for 3 more years and 8 more months? And- of course- is it bone cancer? My doc said if it got worse we could do a bone scan. He thinks it's just aches and pains.
Having a quiet day of house tidying and such. My DH and one of our kids is on an all-day bike ride.Peaceful.
Now to post office. Sorry for complaining.
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For those of you who have experienced neuropathy what is it like? My hands and feet keep cramping all the time and I'm wondering if its that or if my potassium is low. Can't see the doctor until Feb...
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Try eating a banana or a white potato every day for a few days, see if cramps improve. Both high in potassium.
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Janet_M: "this kind of healing is lonely because it comes from such a deep mysterious place" - I love this line. Beautiful post.<3
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I once heard someone say that depression doesn't come from being weak but from being strong for too long, I think that's so true!
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Flutter, welcome. So sorry to hear you are having a bad time of it. The good news: it does get better. The bad news: it may not get better soon. It's true that the doctors don't warn you about how long the fatigue and chemo brain can last.
I found that taking this day by day and even hour by hour worked best for me. It was impossible to plan anything because I never knew if I'd have the energy to follow through with my plans.
Kudos to you for returning to school...I completed my B.A. at age 43. College was actually a lot more interesting and fulfilling to me at that age then when I was an 18-year-old knucklehead.
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I started an ongoing, part-time contract last week, which should mean steady, predictable income for me...what a concept! I also started on my biggest project of each year, a program for an academic conference. I've been a little nervous; I haven't really had much fatigue for 4 months but this was the first time in a long time I had a full workload.
So of course I came down with a fever on Friday! At least the worst of it was over the weekend. I spent most of the last two days in bed, shivering and aching. Had the flu vaccine but was tested just in case; it was not the flu.
So of course I had to poke around on google and discover that fever can be a symptom of leukemia...or lymphoma...or liver mets...I wonder if there will ever be a time in my life when any odd pain or symptom doesn't send me rushing to the internet to see if I should be worried.
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Janet, thanks. I'm grateful for your blog. I loved the one about delivering Christmas toys and how even in doing a good thing, it's not all about us. There is something bigger going on. I would love to think about myself less! Especially regarding boobs and nipples!
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Attended my first support group on Monday. Everyone in there, their cancer had returned. One lady had been diagnosed over twenty years ago and at that time given six months to live... I was the youngest in the group at 50, these lady's were so positive and encouraging. My husband went with me and thinks I should go back again. It's only once a month so maybe... and right now I need the support. This site is also a good support for me. Who better understands what we go through than someone who has been there.
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I just found out that I have uterine cancer. I guess I have to move on to a new support group, Good luck to all of you!
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oh timbuktu! i am so sorry. were you on tamox? you will still come see us at bco, wont you? i bet nothing out there is as good as this group of ladies, but for your sake, i hope so.
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Oh, Timbuktu! I am sorry! You know you have support here, too, if you need it. I hate cancer so much!
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timbuktu that is miserable, but often a hysterectomy is all thats needed, hope thats the case for you......xx
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timbuktu,
This is awful news. What a shock. Please stay on here with us.
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timbuktu...so sorry to hear that you have uterine cancer. You are in my prayers.
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i agree please stay here with people you know
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Tim
Sorry to hear this. Please stay among friends
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Oh, Timbuktu, my heart just sank when I read your post. I'm sorry that you are facing another challenge, but remember that you are on here because you are a warrior. Janet once said on this board that this is a place for warriors who forgot where they put their swords. You will find yours (I bet you have already), pick it up and use it as only you know how. Please don't leave us. We will do our best to support you through this time and you are so helpful to so many on here. Let us know what's going on. Sending prayers and positive thoughts your way.
Rabbit
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Thanks all of you for your kind thoughts. I just want to reassure you all that I was not on Tamoxifin. I've been on and off of Anastrazole for almost 2 years.
I'm back in the decision making phase and you all know what that's like! Actually I don't even know if this is bc that set up shop in my uterus or if it's uterun cancer. I've been sitting by the phone all day, didn't even take a shower, because the drs all say they will call back and they don't. My gyne called early this morning and just told me that there were some "abnormal" cells. I asked if that meant cancer and she said yes. I didn't have the wherewithal to ask what kind grade, etc. Crazy!
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Timbuktu - I hope you get a call from your doctors today. I'm so very sorry that you're being faced with another challenge. F*cking cancer.
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Timbuktu,
All you've been through, and now this. My heart goes out to you. I hope the doc calls back and says it's not too bad.
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I just got the path report. It's an aggressive form. "Poorly differentiated".
Just want to tell everyone, thank you, and PLEASE don't accept delays. Don't deny what is happening when you have symptoms.
Positive thinking can kill!
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Timbuktu: Please let us support you during this time. (((((((gigantic hug)))))))
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Yes agree with Purl - so it will be a hysterectomy sooner rather than later then?
Have you asked for second opinion on sample? I say this as I had 2 analyses of my KI-67 (which i think is cell differentiation), one was over 50% higher than the other one, a significant one
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