Why was I stronger DURING treatment than I am now?
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cfdr, julieho, Rockym- :+ !EXACTLY!
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Julieho - So great to hear that you're 'much better emotionally'. I actually remember when we first met you, and the difficulties you experienced, so to see you climb out from the rabbit hole is kind of thrilling. Such good progress - congratulations.
Not quite as thrilled about your auto-immune stuff though - I really hope you can find some relief from the pain. I'm very interested in knowing if the sugar free, or gluten free diet makes a difference to the way you feel.
cfdr - Nicely said. There is no comparison to the natural aging process. I feel like I've aged ten years this year. I'm finally tired of trying to push things. My normal weekly routine is to come home, walk the dog, then go to a yoga class, or dinner. Well, I just can't keep trying so hard. So now I work, walk the dog, do a 1/2 hour yoga stretch that I downloaded on my ipad, crash on the couch and watch reruns of Sex and the City while I massage myself with Bio gel. And that's ALL that I can do.
I love the part of the day when I don't have to take responsibility for my actions. At work I often say/write the wrong thing and have to correct myself, or I talk to a family member and have to explain my lack of enthusiasm or energy, so I love being at home where all I have to do it is pat the dog and not worry that my shirt is on backward or that I've given someone the wrong phone number. Being alone is so relaxing.
(I feel badly for Jim though. He worries that I'm getting careless and is always asking if I've turned off the stove. Poor guy lives in fear that i'm going to burn down the house)
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Hello Rabbit:
I happen to be a long time survivor
l4 yrs
and read your post, so wanted to respond
My goodness, you did so well during the Tx
yes, but one can not keep this up
The thing is, when we move away from TX
we move away from our team and feel
like we are floating
no security blanket
I did have to take coun selling for depression
and meds, for a short time
Some days are god and some are bad
I send you lots of special light to move through this
and sure you will do fine
get lots of sleep if you can
Namaste
Sierra
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Hi Everyone, Tuesday will be a year that my sister passed away. The time went by so fast. Been dreaming about her so much and feeling emotional. Still can't believe it. :-(
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Surely chemo does lots of stuff to the body and brain, but I think that just having cancer does something to our ability to concentrate. I have not been able to focus since my dx. I have only had surgery and am in the midst of radiation, so cannot blame it on chemo. Hope to regain my brain?? Any experience here with getting back to one's pre-cancer functioning?
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I was just talking to someone who has lung cancer. She said the same thing. The cancer seems to effect our brains. I was in a great books class for 5 years. It was my favorite thing in the world. That last class I hated it. I would sit there and think "I have to get out of here". I couldn't concentrate. I hated everyone there when I really loved them. I couldn't figure it out. Then I found out about the cancer. So it wasn't that I was distracted, knowing I had cancer. I had no idea. This person I was talking to said the same exact thing happened to her and to her friends. I think there must be hormones or chemicals that the cancer sends out to the brain. Very strange.
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There is a thread somewhere on the boards here about people who felt fatigued even before they were diagnosed (I may have even started it...that's just something else I don't remember). There were a number of people (myself included) who were having difficulty in the year or so prior to diagnosis. I asked my oncologist's nurse practitioner (which is usually who I see) if it was possible the tumor itself had caused fatigue, and she answered with a quick and sure "no". But this is also the woman who told me I shouldn't be fatigued 5 months out from chemo, even though a third of women are fatigued 10 years after treatment. So I don't particularly trust her assessment.
I would think that brain issues would be similar.
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...i would have to agree with you, cypher. i think it was in a book i was reading on lymphoma, where they were talking about what they call ann arbor b symptoms, because it would signify a certain subset of that kind of cancer. AnnArbor B symptoms are things like like low grade fever, fatigue ,night-sweats, etc. you have those at first i believe, because your immune system is recognizing cancer cells and you are ending up with vague sort of flu like symptoms. I know for sure that i had been googling questions like, "how do you distinguish between hot flashes and night-sweats" at least two years before diagnosis, because i think i was having them particularly noticeably at night, well after the onset of menopause, which i also experienced and was done with abnormally young. i do think we have to trust the wisdom of our bodies, because i think they do tell us when something is wrong. i was so stressed out over several things, previous to being diagnosed, was dealing with some pretty heavy stuff, that i think if i had been able to slow down and pay attention, i would have been able to notice a deficit in my reasoning. its like i collapsed when i was done with those stressful things. and i have wondered myself, if and how much better i would have been able to handle those things, if only cancer hadn't been percolating in my body.
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...And i do believe that if people in the field were more attentive to the things women tell them, that they would have a great resource into maybe detecting it much earlier than possible with the best imaging that they have. Have you joined dr. susan love's army of women or how study?.... i think she has done and is doing a great thing. and that a copy of her breast book should be given to each woman on her first mammogram, not to scare her, but to inform her. that is, if she is the type who would like to know more. and i think that there are lots of us with this type of question. and i am soo tired of them getting tired of me asking questions @ treatment center. i am heartily sick of them, and am just thinking of jumping off this cancer-wheel, as far as treatments, and just taking my chances with what i have already done, and ignoring them when they call. guess in that case i better get my port out first. and they want me to do a colonoscopy, and i think they are so sick of me, that they would intentionally poke a hole, and i would have to live with a shit-bag for the rest of my life.. wow do i sound like i dont trust them? well i could tell you stories, but i am sure that you have many of your own, like all of us here.
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There is nothing so stupid as someone who thinks they "know" what they can't possibly know,
I recently went for my post op visit with my surgeon., I had had an ulcer bleed after exercising a LOT. I asked this brilliant surgeon if the exercise could have triggered the bleed.
He shrugged his shoulders. I LOVED him for that. He didn't pretend to know. An honest man, a truly intelligent man. And yes, we know our bodies and drs and nurses, if they are
intelligent, will listen, They learn about how to treat the average joe. But no such person exists. Everyone is an individual.
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This isn't cancer related but a story about a know-it-all doctor who didn't. Around 1990 I was diagnosed with asthma. At that time they treated it mainly with a drug called theophylline. Since my main asthma symptom was coughing at night, he told me to take it before bed. I did so the first night, and laid awake until 4am. The next day (no Google in 1990!) I went to the health library at Stanford and looked up theophylline in a PDR (Physicians' Desk Reference, kind of an encyclopedia of drugs). Number one side effect: insomnia! I talked to a couple of friends who are nurses, and their reaction was "DUH!!! Theophylline is chemically similar to caffeine. Of course you couldn't sleep." When I went back to the doctor for a follow-up, I told him I was taking it in the morning because of the insomnia. He said "theophylline doesn't cause insomnia." I said "Pick up that PDR on the shelf behind your head and look it up." He did and said "Whaddya know!!!" This man was an allergist who treated lots of asthma patients. How could he not know the #1 side effect of the #1 drug he was prescribing for a common condition???
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Ugh! And we trust the "experts" with our lives, what choice do we have? Well, you handled it well, in the end we have to take care of ourselves, which is really hard when you're sick!
I also have asthma and was told that in a pinch a cup of coffee will help. Caffeine by any other name...
What a story!
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Janet, I think my husband is concerned about me burning down the house, too! I am just so scattered...driving, where am I going and how do I get there?....not emptying my pockets before laundry and having lip gloss go through repeatedly...misplacing everything...forgetting so much. At least I'm not crying so much despite current hardships. I am picturing you on your huge couch after work that you wrote about on your blog, with your dog.
I am hoping this is a result of treatments and not a warning of more...
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Hi all, not a good week and I'm so glad I have you to bounce this off of.
My friendships seem to be changing. The current example, my friend of 30+ years
that moved to another state about 8 years ago sent me a card. She told me she was going to send it when we
had a nice phone convo and remarked that it reminded her of me. I’ve attached an image. The sentiments written were nice. Love you, miss you…, but I sent her an email
(1st mistake; I should have called) and told her thank you for
loving words and casually mentioned that the outside startled me. It looked tired, sad and angry. I said that it made sense since those were
definitely feelings of mine in the last year.
Well she got soooooooooo angry that I would think she would
intentionally send something hurtful and that “she” thought the card
represented courage. Art is interpreted
differently which makes the world go round but she has taken such a defense to
my response. Her anger seems so over the
top. I’m just getting use to the whole
anger thing. It was easier just keeping
my thoughts to myself. Love to you
women. Does anyone think this is a
little “startling”? Sorry.... it copied in rather huge!
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purl, love you... just think of what my friend amy said, many years ago... its only a drawing.... but you could throw it in the bonfire of the goddesses! see you there!
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I agree with your assessment Purl. It's a disturbing portrait, at least to me.
I guess everything depends on what your relationship is like but I personally am so fed up with people who can't accept that another person has the freedom to think and feel what they do. It extends to politics and everything else. Everyone demands total agreement and I find that contemptuous of our individuality, It's crossing a boundary.
OTH, the woman in picture is beautiful. I keep trying to remember something my daughter told me. Her brother behaved horribly when I got sick and I just could not cope with his rejection of me. I could not get past it. My daughter said "What he did was really, really awful, but it doesn't make him worthless." I think of that so often because I think it's a really mature outlook and I want to be her when I grow up. It's hard though.
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I showed my husband the image. He is an artist and professor of art of 40 years. I read him the note and when I read "courage" he said 'NO WAY!" He thought it was a frightening image of someone who has been very hurt. She's protecting herself, her throat, from further harm. Her hair is starting to turn gray from stress. Red is blood, purple is death. She's wearing a mask.
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Kathec & Tim: Thank you for your feedback. It means so much to me. Tim, your hubby saw the picture exactly how I did. Wow I loved the insight from the prospective of an art professor. The meaning of colors, hair, mask. Thanks again. I feel my being "startled" was spot on and I embrace it! Love to you.
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What an odd picture. I am grateful to the art profs who were able to interpret it...I've taken several art history classes but they were no help to me here! Honestly, when I see someone's face painted in colors like that it reminds me of sports fans who paint their faces in their teams' colors. To me this looks more like an artist just trying to paint something cool and sexy without any particular content.
Out of curiosity, I googled "H Peter artist" and I'm guessing this is him:http://www.henripeter.net/category/gallery-all-pai...
Don't know if that gives it much more context though. He mostly paints southwestern Native American imagery, with a little cheesecake thrown in. Pretty kitschy stuff, IMHO.
According to his bio, he's self-taught. And color blind.
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Purl - I find that picture really agitating. Are you familiar with Munsch's 'The Scream? '. Well, it looks like that, but with bad 80's make-up. It reminds me when I was on steroids and I was so uncomfortable in my own skin that I thought my head would explode. But I think that even a picture of my exploding head would be better - at least it expresses release. Yuck.
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cfdr: Thank you for your insight. I am just like you. I went to the artist's website too. Colorblind. I forgot that part.
Hope you are doing well.Janet: Agitating. Just how I felt the second I pulled it from the envelope. Thanks for your feedback too. It's hard to imagine how this was interpreted by my friend as positive and brave. To each their own. and "Yuck", that's a good interpretation too. Funny, I thought, "oh, I look forward to receiving a card from my friend. It will probably be something I may want to frame and hang to remind me of hope or something". ~~~NOT! Love you all.
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Since we are interpreting art (if that's what you call it :-)), to me it looks very childish. Almost like someone trying to be hip, but just not getting there. I recall reading about a model who was painting her face that way and some rap artist stealing her look and copying her face as their album cover photo. Maybe your friend saw courage because the color purple can associate with the purple heart metal from war. That's my best guess, but I don't know how old she is or if she would be clever on associations. Either way, I say ewwwww.
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Over the last few years I've had several uncomfortable interactions with friends where I've often felt like saying, 'Do you even know me?'
That's how I would have felt if I received that piece of art. By the way - I've got three pieces of art that I've received as gifts that are sitting in my closet. I can't put them on the wall because they don't make me happy. In fact, I'm confused with why they were even given to me. I'm not sure if it's a post-treatment adjustment, or that we all hit 50 and got walloped with hormones and are going a little bit crazy.
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Rockym: Thank you. She is my age, 53. We met when we were 13. All other cards over the years have been so calming/beautiful/uplifting.
Janet: "Do you even know me?" Yep, I have had that thought with quite a few people in the last couple of years that I have shared so much with. WTF? Stands for "What The Floogenheimer?" ~~ I printed out a really beautiful picture of a floating lily the other day that had the phrase. "If it is not beautiful, useful and brings you joy...get rid of it". Maybe after all we have been through anything that doesn't resonate peace or brings us a feeling of comfort and healing of some kind makes our insides reject it. Like our hearts are taking care of us. Yea. I like that thought. That is a post treatment adjustment I can deal with.
Bless you women. Truly; how I appreciate you.
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Purl,
I agree with all every one else has said. I am shocked that someone should send such a picture to someone who has/had cancer. It's just so 'dark'. I think it says more about her than it does about you. What was she thinking and feeling to send something so lacking in comfort, or real regard for all you have suffered. It's really odd.
Janet, does she even know me? yes!, me too!. I have had that. My friend whom I have known for 20+ yrs exclaimed with glee, when I asked her to help me choose scarves for my baldness: 'Oh goody, I love shopping - let's go' I was utterly desperate at this point to try to look 'normal' - really struggling. I couldn't and still can't understand her reaction. I have felt our friendship 'slipping' since - and I don't mind/care.
Purl, If I could work out how to embed pictures, I would post a lovely pic of spring flowers for you!
I am sad that you too, have been left bewildered by the actions of a 'friend'
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Wintersocks: Thank you for your interpretation. It "is" a dark picture. I have received such empathy and support with this issue today. Day started out crappy, ending feeling very understood and strong. THANKS my friends. It really means so much. And Wintersocks, thanks for the spring flowers.
Gals ~ Another quick memory with another friend comes to mind. She met me at the salon to watch me get my buzz cut when I started chemo. She wore a swimming cap (for solidarity). As I walked out the door facing the outside world feeling bald and exposed, I realized I was alone. She was still in the salon and spent a good 10 minutes deciding what shampoo to buy for herself. What? I don't make a lot of effort to spend time with her. Not because of this one instance, but many that just didn't feel like she was present, especially since diagnosis/treatment, etc. You all know what the "etc." is all about!
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Oh ladies it is always so good for me to come back to this board and catch up. I have been out in Santa Monica with my grandson, true love. So much fun, but back home and in reality again now.
I agree that the painting is odd - regardless of her intent, or her interpretation to reject your interpretation of the drawing, and in such an agressive way is just plain sad and without sounding dismissive, just not what a friend does.
I so agree with you that relationships post-cancer and treatment change. I feel like for the most part I have had good interactions with most of my friends but as we mentioned before the "aren't you over it" stuff and the lack of really wanting to understand how this emotionally all feels has been hard. People get it when you feel sick from chemo or surgery, somewhat at least, but, the emotional pain, the loss and the fear I have felt for the most part my friends don't get, especially now that it is almost coming up on two years since my diagnosis.
Speaking of which, I have been feeling emotionally much, much better as I mentioned several months back. Someone mentioned that a year out from the last chemo seems to be a moment where the really healing begins. For me that was true, this January something lifted. I have felt so much better emotionally and even have days where I don't think at all about cancer or any of it.
I think many of you know that my daughter was getting married four months after I was diagnosed. With my bi-lateral mastectomy and chemo she cancelled her wedding. They got married (legally at a justice of the peace) anyway and thought they would have the wedding the following year. Well, they had Oliver, my grandson instead this year.
She called me when I got back from California to tell me that they are re-booking and having a celebration of their marriage in June 2015. They had put a 50% deposit down on their wedding venue and thank goodness the place allowed them to carry that forward. I was of course happy but it triggered some real fear in me again that I haven't been able to talk to anyone about. But, I figured you would all understand.
I realized that I become so fearful about "plans" and the future. I wanted to say, "well, if I don't have a reoccurance or a new cancer again that's great." or , "hopefully I will still be alive then". I don't say these things - thank god but I found myself just sobbing the other night and filled with fear again.
It has mostly passed but I wanted to "release it" and share it with all of you. I am trying to just accept these feelings and not be frightened that I am slipping back into depression, which I don't believe I am. I think it is just part of this journey.
Anyway, I love all of you and so love this thread and being able to share with all of you.
Thank you SO, SO much for being here.
Julieho
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Julieho I think those things quite often - like something on the news or a new railway line and instantly my head shoots to "wonder if I will be alive to see it" , "is it worth organising a pension" etc etc.......I talked it over with my therapist and he seems to think its all normal and part of adjusting to our new "realities" of being hyper aware of our mortality, as opposed to those who just trundle on in life kidding themsleves they will live forever.....
I feel like most people I have spoken to just demonstrate they don´t get me or understand me........but i am deliberately trying to practice kindness to myself and to others
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At least she didn't send you one of the paintings with breasts exposed! Thanks for small favors.
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Tim: Ha! Love starting the day with a chuckle. You are so right.
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