Why was I stronger DURING treatment than I am now?
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Janet.
How lovely you were there to take care of your sister. Hope you are both ok.
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Janet, Good for you! I would do the same thing. Having gone through....well, actually still going through all of this, I hope God uses me as a support and helper to ANYONE who needs it. I knew nothing about Breast cancer 6 months ago. Now, I feel like an expert. I still am recovering from chemo - 2 weeks PFT. Hsve surgery for reconstruction in a couple of months, but plan on doing whatever I can to help others in the future.
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Janet: Thinking about your sis. I remember the fog/disconnect when I was told I had cancer and your sister is very fortunate to have you by her side. I totally get that inner warrior feeling when in a hospital, especially if you were treated there. I was treated and had surgery at the same hospital my mom spent so much time in during the 70's and she died on the same floor I had my mastectomy. I walk around that place like I own it! God help the nurse or aid or doctor that may look at me sideways or doesn't listen to me or the person I am there to visit. Strange how "powerful and deserving" I feel within those walls.
I need to extend that power to the rest of my life! Thanks again for sharing; it is always nice to read your posts which contain both wisdom and a welcoming humorous slant.
Love and a huge (& especially long) hug to all on this treasured thread,
Purl
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I managed to find some humour (after a while) in the fact that I was working as a voluntary Oncology Support person in the acute oncology ward at one of our major hospitals, when I was diagnosed with breast cancer. The reason I volunteered for the Cancer Society was because I had had cervical cancer when I was 20 so thought I might have some empathy to offer those going through their own trials, but I did not expect another boxing round with cancer myself, thirty years after the first round. The interesting thing is that I didn't have any of my seven surgeries at that hospital. It's like the universe wanted to separate out my 'work' from my 'self' which was good, as I can walk the corridors of at least that hospital without having memories of being there as a patient
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Thanks girls - for your kind thoughts. Purl - I can relate to walking around the hospital as 'though you own it'. I have a lot of respect of for most doctors and nurses, but when it comes to not getting results, or not getting access to a room or an appointment, I start to look at them all as a bunch of giant toddlers who need to have their clipboards taken away, along with their Fisher-Price stethoscopes.
Ever since my dear BS failed to show up for my mastectomy, my sister has been on high alert and demanded to see her surgeon, in the OR, before she was put under. As well, we want to know his schedule for the next few months so we're aware of when he is unavailable, out of town, or playing golf. Also - the best method of communication, be it phone, email, texting. And who is his second in command.
Mysunshine4 - Hope you're recovering comfortably. Be kind to yourself. One of the best lessons of learned is that healing is non-linear process and there may be good, and not-so-good days as you move forward. Be patient. Pamper yourself as much as you can. Give yourself permission to rest. Drink a lot of liquids. Accept help. And don't be hard on yourself if you have a meltdown.
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Thank you, Janet. It just seems like recovery is so slow. I have never been a sit around person, but I am listening to my body.
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It is SO slow. Just think about also those little teensy tiny little cells rebuilding your body. And it's not like they're making a crappy bungalow. They're rebuilding the Taj Mahal.
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Janet, I'm so glad you could be there for your sister.
Mysunshine, yes, the slow pace is frustrating. I'm not a sit around person either. But if you give in to those tendencies, you may have a setback which delays progress. Hang in there.
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Janet...you are amazing. Wouldn't it be cool if the hospital had "sisters" you could be paired up ...I can't imagine being alone and going through it all.
We are Moving on Saturday...the house is in shambles...I'm tired, I'm losing weight, and DH thinks I'm a little steam engine....I'm not doing anything healthy except taking my tamoxifen....and it's crazy wicked hot here. I just want the move to done.
Mother Nature has also blessed me with the period from hell. My PMS has also gotten worse. OMG. My DH just doesn't get it....I'm so done and need a time out in a clean dust bunny box free house!!!
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Oh..and my DD is working as a camp counsellor with 4&5 yr olds....and there is a head lice outbreak. How bad of a mother am I for not wanting her to come home this weekend...or at least until her waist length hairhas been thoroughly checked!!!
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JJ, you are NOT a bad mother! You don't need head lice in your house on top of everything else. What you need is a break. I'm going to come over there now and give your DH a smack upside the head. He needs to start getting it. Please, please try to get some rest and a healthy meal so you don't crash and burn.
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JJOntario - You're moving during a heat wave, post recovery? It makes me exhausted just thinking about it. Tell your husband to either take you out for dinner, or slap something on the barbecue that's good and healthy.
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I have been out this.last week or.so feeling terrible. I thought a side effect of my new heart med was my cough, but it.seems it was maybe that along with the enjoyment of a.summer cold. Now the right side.is not.just sore from my.expansion,.but also from coughing and sneezing. I keep trying to tell myself it is still better than last year at this time when I was recovering from chemo and my bmx.
Janet, I am sorry to hear about your sister's diagnosis. She is lucky to have you there to advocate and help her.
JJOntario, wow, moving during a heatwave. Yikes. I hope the.head lice.does.not.make.it's way home with your.daughter.
Sunshine,.I hope.you can try to enjoy healing rest and be gentle with yourself.
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The topic of this forum...I get it now.
I chose my avatar when I was first dx in January...that's how I felt. Now I feel defeated - I don't have that tough attitude anymore. I wonder if the transition from HRT to an AI (pretty extreme) has anything to do with it. I wish I had the mindset when I was first diagnosed but I don't, and it will never come back.
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Doctors that say (when I mention side effects like fatigue, joint pain, weight gain, arthritis) "Oh, you're just getting older" can kiss my A. Four years ago I was strong, eating well, exercising....happy. I was so hopeful and strong after diagnosis (finding a little lump in the shower). Today, I don't recognize myself anymore. I've gained 60 pounds and wake up in pain throughout the night. I'm cynical and tired. Some good days, but I use to have a lot more. I'm trying.... ~ having you all here that understand sure helps. ALOT!!!!
Love, Purl I CALL THIS "ONE FACE OF BREAST CANCER" ~Enjoy.
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Yes, Purl - it's amazing how cancer changes us; some handle it better than others.
I started Femara 2 months ago - gained 10 lbs...is that possible?
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Jilly: You mean some "doctors" handle it better than others.
and yes, 10 pounds is totally possible. 25 of mine came from the chemo/steroid, 25 from Tamoxifen/Femara and the last 10 from frustration.
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That fucking sucks, Purl. that is a graphic depiction. a year or so ago, my oncs nurse said, when i was complaining of pain and weight gain and shortness of breath, said 'Well, you ARE getting older!". well , fuck me. i have a sister one year younger, in terrible shape for many years, and she does not have the pain and shortness of breath that I do. So last time I saw that nurse, I told her my sister was my 'control', so I could see what it was like to age naturally with out the ravages of treatment.
I have thought a lot about this recently. Yes, I am glad I am alive, but really? all this crap special effects? Just yuck.
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I recently saw a different doctor and she. nodded knowingly when i said my lung problem resolved itself after stopping Aromasin........I am now seriously thinking about NOT taking it again.......
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purl- I was diagnosed the same month as you.
A while after starting letrozole, I was miserable. Arthritic hands and feet, if I sat for 15 minutes I could not get up, constant pain, not sleeping well, felt like I was 80 instead of 48 and I gained 40 pounds. I went to a rheumatologist convinced I had a new disease. She contacted my oncologist and suggested a break from the drug to see if it was causing these symptoms. It wasn't until I got off of it that I realized I was also depressed. So many of those symptoms went away. I got a clearer head, was able to eat better and started to exercise. Lost some weight and started to feel like myself.
I switched to Aromasin and I did so much better on it. I still have creaky hands now and then but nothing like before. If you have not tried one of the other AI's, it is worth a try. Different drugs are better for different people.
Wishing you the best!
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Thanks Tomboy and Ginger: WOW sorry gals, I didn't realize how HUGE those pictures posted. Ginger, I was taken off Letrozole a month ago because of side effects. I was told that SE's may get a little worse before better and they did, but now I AM less stiff in the AM and very hopeful that I am able to move around easier and easier. Thank you for your understanding all. I may remove those pics as they are way too big. Anyway, Love to all, Purl. FULL MOON TONIGHT!
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Purl, I get it. I feel like I aged 10 years in the year after my diagnosis. I have a sister who is 3 years older than me and overweight from the usual causes. She doesn't have the "signs of aging" that I have. You can't tell me that multiple surgeries (what does the physical trauma and the anesthesia really do to us), chemo poisoning, radiation burning, and the biochemical changes that come from sudden and severe reductions in estrogen don't have some long term affects such as speeding up aspects of aging.
Tomboy, I hope that nurse got what you were trying to tell her. Saying that we're just getting older is patronizing.
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I have to agree all of these treatments to keep the cancer at bay have got to be doing to the outside what they are doing to the inside. I think that is part of what adds to my bitterness...I not only feel like crap I look like crap to. I have no idea who that person in the mirror is, but I am pretty sure it isn't me.
I had a bit of a meltdown today after an appointment with my regular doc. Not sure why. I talked with her about how things were going & reported I am plugging along...then got home and was fearful and sad.
I think it probably had to do with the brief conversation we had about my work situation. I had told her before they have not been treating me well, but I need my health insurance. That makes me feel so trapped. Ugh. I hate that.
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Smurf, I am so sorry. They really need to NOT treat you like that at work. Isn't there anything you can do about it? I am so so sorry..
Purl, I hope that you DO leave those pictures up, I just went back and looked at them again. In fact, I am an artist, and I know I can find a gallery that would show them. So, you gave me a great idea. if anyone is interested, please pm me with your before and after. Let's do the real deal for october, which is rapidly coming up. If you send me pics, I will take it from there, blowing them up, and then when I am done, if you want them, you can have them? Or whatever. I think people should really see what happens. It would give me a much needed imputus to go and do a show, funny, because right before I was diagnosed, I was trying to put together a show of my very first solo exhibit of my artwork. Well, needless to say, that didn't happen... What do you guys think, anybody game?
Smart, also, I think that mini melt down was proper, and right on time! It's what we do.
2tabs, I don't think she did get it, all the way, in all of its implications, but she did get a pissed off look on her face. Good! She does it to me too many times to count.
Love all you gals.
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Tomboy: My first instinct was "no
way!", but if the photos are part of a
plethora of other before/after shots and presented in show geared toward cancer
support and I remain anonymous, I may think about it. It seems that most
cases getting attention these days are the "after shots" where women,
post treatment, are portrayed ~ finishing a triathlon or dressed in a beautiful
gown after having breast reconstruction or beaming with that “I’m just happy to
be alive” face.We are beautiful and brave (well, I know the ladies on this thread are…I can speak for
us and a few other I know).... but so many of us post treatment don't recognize ourselves as we
attempt to find that place of self-acceptance. I am hoping to feel a lot better/stronger than I do now someday which will soften my reflection in the mirror. I feel that it's important that people
know the road is not a smooth one for most attempting to reach that point.
It can be so difficult, painful and downright exhausting. You can PM me if you decide to go forward
with the show.Thanks 2Tabbies for your words too.
Love ya'll!! Purl
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Smurf, I've had days like that. I'll be ok, and then some little thing, or nothing at all will send me into a depression. I'm sorry about your work situation. Mine is part of the reason I'm depressed also. Not that they treat me badly, but other stuff. I feel like I'm wasting my life just to hang onto the insurance and increase my retirement benefits a little. Have to wonder if it's worth it. I'm sorry your employers treat you badly. That just sucks.
Tomboy, I might consider your idea. I'm not sure if my before and after photos, unless they included my bare chest would adequately show the damage though. The only thing really noticeable is that I had wavy brown mixed with gray hair. Now I have curly definitely gray hair. The weight gain doesn't show in my face. But if you decide to do the exhibit, let me know.
Purl, I could just scream when I see the "after" photos like you mentioned where everything is peachy. It makes me feel like such a loser because everything is NOT peachy for me. You know what else really pisses me off? The models on web sites and in catalogs for mastectomy bras. They're all just grinning like they're so happy to be wearing the damn thing. Me? Not happy. I hated going to that store. Hated it. Even now that I'm far enough along in recon that I don't need a mastectomy bra or prosthesis, just the thought of the things makes me angry. Irrational? Yes. But there it is.
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Agree with the bra models, 2 tabbies!
The more I thought about what I asked about the before and after proof of ravagement art exhibit, the more I really liked it. Its something that I think about every day, and I can see it in the mirror on my face, and with what my body feels like and looks like now. My hair is lusterless, my skin is dry, I have gained 30 lbs that I can't seem to shake, and I am flabby and slow. My neck is like a scrawny chicken, and I have violet bags under my eyes. One BigArm! So many things on my face and bod are different, and I don't have to like it. I will show you before and after pictures of me, let me go get them. I would leave the image up to you, both of you; or to whomever would like to be a part of this. I will try and write up a prospectus/ informational thingy to let you know more of exactly what I would like to do. I think a wall of women's faces, or whatever they cared to show, would be a profound and amazing thing. I would not show anything that was not comfortable to each of us. I love us so much! And now you have given me impetus and excitement about a great creative task!
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here you go:
And: So there you have it. I am doing my oliver & hardy imitation.
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Purl - I agree so much that all we ever see are triumphant cancer ladies. So much of the publicity glamorizes 'survivorship' as though its a sorority that is really hard to get into,but the rewards are fantastic! You come out stronger than ever!
Sometimes we look good - and sometimes we look different. What nobody sees is all the crazy sh*t going on inside our heads. Well, my head anyway. I don't like my big puffy hand, or the aching knees or the 20" scar, but that's nothing compared to the invisible stuff that I carry with me.
I love seeing your pictures, and putting a name to a face. I think we are all amazing.
Janet
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Very nicely said, Janet. I feel the same way, but doubt I could have put it into words so neatly.
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