Why was I stronger DURING treatment than I am now?
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Julieho - I believe you when you say that you 'literally can't imagine that right now.' I was there too - completely without faith that I would ever feel capable again. Cfdr sums it up too when she said that she doesn't recognize the person inside her skin.
And the time lines are all similar. My breakdown was about a year after my diagnosis, and a few months after the end of treatment. Currently I'm recovering from DIEP surgery, but that was nowhere near the mental minefield of last summer.
I liken that summer to the moving sidewalks they have at airports. You've got all your bags and suitcases but they balance quite nicely as you get carried along. And then you are spit off, and all those bags become great burdens that are unbalancable, and there's nothing carrying you along, and everything is going by you without paying any attention.
But eventually you will start to reassemble yourself. The good news is that all that you treasure is still available. Your kids, husband, new grand-daughter, dogs, horses and donkeys will all be there for you. The thrill of a good book will come back. Your humour will come back when it finds a place to fit in. The mourning will fizzle out, and the sadness will run it's course. When that happens it will open a door for joy that is temporally out of reach. Your grace won't desert you, and will be recognizable to everybody except you. You'll absorb the shock of all that has happened, and shed the excess baggage. You will to find things to grab on to and you will learn to keep your balance. And when that happens, so will the large strides.
it's good that you're taking your computer. You never know when you may need to check in here and get a pep talk.
One of my favorite pieces of wisdom came from a girlfriend who spends half her life in therapy. And thank God she does - cus I get all the good stuff without ever having to pay for it. I showed up on her doorstep in tears, and she asked how I was, and I said 'Not Good'. (Something I never said) And told her that I was losing my mind, and having meltdowns. And she said, 'Just because you're having a meltdown doesn't mean your not coping'.
So, in our own ways, we're all coping. And this next step in our 'recovery' requires that we live in discomfort and confusion while we adjust our bodies and our minds. Unfortunately - it just sucks. Perhaps it is temporary insanity. That wouldn't surprise me. I sometimes get flashes in my head of various appointments, tests, operatoins, nightmare phonecalles, and I just shudder. That seems like someone else's life right now - and it was so much more difficult than I ever admitted, especially to myself. But how quickly cancer-land became the 'new normal', and how unfair that our old selves were uninhabitable.
So take care. Enjoy your trip. and take little steps. Check in here when you need some understanding, or a place to vent. I can't think of a better place to go that's all support, and no judgment.
Rabbit - Ugh. Ocotober. Pink everything. I was away with friends and we rented bikes, and someone suggested I get the pink one - cus of cancer. Er..no thanks, Arsehole.
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Hi again Bayou.. This thread is great. It was reading all the comments here that started the Coping 2013 thread that you and I have been on.. A lot of women on the Summer 2013 rads thread were already starting to "hit the PTSD wall". It was/is SO helpful to learn from these women.
The aromatse inhibitors sound "scary". So far, I have "think" I have been OK with the Tamoxefin. Still sorting it all out.
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Lenn13ka - I am hoping your run with Tamoxifin stays a pleasant one. Have my fingers crossed for you! You are right, it is amazing all the things I have learned from women here. The good, the bad, the ugly. But everyone on this site helps in seeing the light at the end of the tunnel. Cheers to all of you here!
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BayouBabe I so understand how you feel. I thought I was losing my mind.
In so many ways I do physically feel better than I did five months ago and am definitely physically stronger but emotionally I just started tanking. This recent bout of depression felt more like grieving a death than just being down. After my mother died of cancer 17 years ago I remember having this kind of emotional pain, where I would hear myself utter sobs I didn't even know I had in me and I felt so alone and lost.
I realize that in a sense I am grieving. The year had so many traumatic events held within it and I was so occupied trying to focus on both the immediate issue, surgery, treating post-surgical infections, chemo, drug reactions - etc and/or preparing for the next thing that I feel like I never really processed it all.
There are days where my body so doesn't feel like my own now, between the foobs (breast implants) and this sort of pins and needles discomfort I have all over, bouts of daily anxiety attacks, which I had never experienced before and what feels like out of control grief at times I feel ashamed and guilty that I am not "enjoying" being physically stronger, healthier and more active now than I was over the past year.
But, I am encouraged by Janet M's remarks that eventually I will begin to reassemble myself. I love hearing the sadness will run its course and the grief will fizzle out. Intellectually I know that but was sort of beating myself up with feeling that if I know this than why don't I just let go of it now and get on with it. After being on this discussion board I realize this current feeling is likely as much of a process (at least for some of us) as having nausea and bone pain after chemo and neurotin treatments. The side effects of chemo, or recovery from surgery were all processes that as difficult as they were I didn't beat myself up for experiencing them or having difficulty at times going through it. But, I was doing that with this emotional bottom I hit late this summer towards the end of all my treatments.
It really helps to understand that this too is another part of "recovery" and healing from BC and treatment. I don't particularly like this part, I would prefer to just get on with it, skip this over and feel like myself again but, I am not sure what that is yet and what that will look like.
Thank you all SO, SO much for being here.
Julieho
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julieho,
You are doing fine - honest, just keep talking to us on here. I am having a bad day today. Don't know what I feel or think most of the time.
I have my date for the ovary cyst removal and Oophrectomy - 7th November. My gynae says it is 'almost certainly b9'.
I feel like I have never got off the medical merry go round. BS for 3 month check on Weds. Gulp.....I feel like I have to be dragged in there....
I am keeping up with you all......
Cold here now in GB
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Julieho, I've been real achy too. Funny thing is, before bc, I might have just shrugged it off, swallowed a Motrin and not thought about it. And now I get emotional every time I'm achy or tired!
Janet -- great post -- I've read it 3 times!
When I was first received my biopsy results in June 2011, I had a doctor with a terrible beside manner who bluntly told me that my cancer was probably late stage. In the weeks that followed, I realized that I no longer cared about all those aspects of my life that I had been dissatisfied with -- not married, never became a famous author, overweight, etc. I just wanted to be able to continue to do ordinary stuff: go to work, go shopping, go to the movies, etc. I wanted my life back, exactly as it was! So now that I've survived Stage 3 cancer, all those dissatisfactions are creeping back; but now I'm remembering how I felt in those early days of my cancer journey. So I'm going to just start enjoying the ordinary stuff! I changed doctors pretty quickly, by the way.
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Just Susan, that is a great trick to remember. Every day, no matter how mundane or dissatisfying, is a gift that we thought we might not get back when we were first diagnosed. BTW, I was diagnosed in July of 2011 so we're at a similar point in recovery. I felt the same exact way. I would never complain about the weather, etc. Good thing to remember, Remember to be grateful!
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Dear Julieho,
I know exactly how you feel
I've had a real rough year....and now that it is all behind me....its like wow I had BC!!
i don't believe I will ever be the same....this is the new US
love
Ann
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Janet,
you are an amazing writer...you say it all,
thank you
Anne
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The October issue of O, The Oprah Magazine, has an article that hit the nail on the head for me. It is called "From Shock to Awe" by Kelly Corrigan. Her book Lift was a great help to me when I was diagnosed two years ago. At the time, she also had a website and linked to Cafe Press where I bought a that T-Shirt I wore to the hospital on hard days - Nets are for Training, This is the Real Thing. http://www.cafepress.com/circusofcancer.31394273
Anyway, back to the new issue of Oprah magazine. In the article, Kelly describes four stages many go through when diagnosed with BC and her descriptions really rang true from my experiences. Her article put words to my feelings, that I'm still wating for the "awe". Her words also gave me more confidence that I will get there. It's a great and uplifiting read. Well worth the cost of my subscription! In fact, priceless, as I am now more sure that I will get to "awe".
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BayouBabe, I went on lexapro right before chemo because I was having a lot of anxiety. The counselor in the Breast Center said that about 25% of cancer patients are on antidepressants. I continued on it for over a year. When I complained about fatigue the oncologist just said "increase your dose of lexapro" but I went to some discussion boards about depression and discovered that a lot of people on lexapro complain that it makes them tired and fuzzy-headed! So I tapered off (took 6 weeks). Sad to say, it made no difference in my fatigue level.
It's also possible that Femara could be causing, or at least contributing to, my fatigue. Since I started it right after chemo, while I was anemic and had pneumonia, it's not like I had a window of feeling OK before I started taking it.
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What I love is that statement 'I HAD breast cancer". That's the way to think about it, in the past tense!
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Anne - Thank you for the compliment. I'm glad I can still write clearly, because sometimes the inside of my head feels like scrambled eggs.
By the way - I have blog, if you're interested. A little more writing, a lot more of my imperfections! The address is below
Janet
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Lately I've been thinking that living a good life just takes practice, like learning to play a musical instrument or learning a sport. I watch a lot of baseball, and I'm often inspired by how sometimes players slump, sometimes they get hot, they lose games, win games ... and they just keep going, keep trying to figure it out. I also like to read books about meditation and Buddhist philosophies. Buddhism offers a lot of tools and concepts a person can use that are helpful, but there is no expectation to convert. Most of the spiritual stuff that Oprah likes to talk about come from Eastern religions. I will buy the October issue of O to see what I can learn. Have a great day, survivors! (It's noon here in Northern California.)
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Just popping in to say I love you ladies. Sharing from your heart and supporting one another even as you face challenges of your own!
I can identify with so many things you have all written. Diagnosed in 4/2011, I thought this would all be in the past by now. I do think the aromatase inhibitors can cause a slow forming depression. I had a hard time on Femara: stiff joints, felt like I was 90, numb arms and hands and tired all the time. Went off it and then I realized how terrible I had actually been feeling. No joy in my life! Started feeling better after a few weeks of going off it. Now I am 2 months into aromasin and lots of symptoms are coming back. Promised my oncologist I would give it a fair shot because I am BRCA2+ and he is concerned about bc showing up again...time will tell if I can stick it out.
Thanks for being here!0 -
Ginger hi, i am same as you, now to months in to Aromasin after Femara.......and i am now getting generalised ahces but more importantly the crushing pain in centre chest i did not have when on a lovely holiday from meds....
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Lily- I am sorry to hear that; I have not had that side effect. I hope that one does not stick around for you.
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Hi everyone,
Just wanted to say hello to everyone today. I have had a very up and down few days but the good news is that there have been a few ups - which mostly translate into small periods of the day where I feel I can sort of focus on something and stay busy long enough to not feel horrible. Progress not perfection.
I leave tomorrow for LA to see my daughter whose first baby and our first grandchild is due tomorrow. I am very excited but also very anxious. Being done treatment has left me feeling like I am without a safety net for the first time in over 15 months since I was diagnosed - I know this is just a perception but it feels so real and causes me true anxiety. Which of course then translates into anxiety about not being okay, present, strong, etc while I am in LA helping with the new baby.
Ugh - sometimes this whole thing just so sucks. I so want to feel the same joy, excitement and burst of energy events like this gave me and instead I am sort of numb, scared and breathless half the time.
I did have a good period yesterday where I actually felt the excitement and anticipation of holding my new grandson and seeing my first born become a mother for the first time. So, it is still in there just have to access it and try to chase away some of this overwhelming fear and anxiety I am struck with throughout the day.
Thank you all so much for being here. I will be checking in while I am there over the next few weeks.
Hope all of you are doing as well as can be expected.
Julieho
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Julieho - We can be your safety net! There's a lot of positivity in your post, but I understand the trepidation as well - and you summed it up perfectly with the safety net analogy.
Sometimes I think about jumping from Lilly pad to Lilly pad - we're safe for a while, and then we have to navigate to a new place. But it's so great you felt excitement yesterday. It's hard to summon happiness , and 'trying' to feel happy is a b*tch. But the fact that you felt it? Amazing! It's all baby steps, and you're already moving.
That little baby will have a lifetime to fall in love with you.0 -
Julie, I hope you are get so wrapped up in loving your grandchild and being there for your daughter that you totally forget about everything that's happened and all your fears. And that while you're away, all your fears get bored of waiting and wander off without you.
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Hiya All
Going to the last of my 3 month checks tomorrow (then moving to 6 months).
I am allowed a large glass of wine?? (cos I can feel the anxiety growing)
Juliho, you sound to be doing ok. Keep holding on there.....
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wintersocks,
Great news. I know this sounds stupid but what do they do at your three month and six month checks. I had bi-lateral mastectomies so all they ever do when I see my oncologist is listen to my heart and lungs and palpate my belly. It feels so scary not having anything they can "test" - take mammograms of or mri's, etc.
I just would love to hear what others follow up appointments are like. Enjoy the wine and I am sending positive thoughts and energy across the ocean your way.
Julieho
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This is my schedule
every 4 months follow-up with oncologist- blood work
every 6 months follow-up with breast specialist- ultra sound
every 6 months follow-up with gyn for pap
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I agree whole heartedly..the day of my last chemo when I rang the bell I think I was really crying because I was terrified of leaving the hospital and the team that took care of me. It's really hard to believe it when your doctor says you're cured and he's pretty confident he can squeak another 20 years out of you when cancer is so cunning you didn't even have a clue you had it in the first place. My children are grown thank goodness. I just can't imagine trying to juggle cancer with a young family. Maybe our poor friend above is also exhausted.
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My radiation doctor, surgeon, and chemo oncologist take turns, so I see one of them every 3 months. So far all they've done is talk to me and then feel the area. I've got two implants so they're mainly checking the edges. One nice thing about my cancer "adventure" was that my doctors met on a regular basis to discuss their cases. So whenever I saw one, I didn't have to explain anything--she was already caught up. My follow-up #3 is next week.
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Cheers Wintersocks!!
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I had my final surgical followup last month. Now I see medical oncology every 6 months, radiation oncology every 6 months, and a mammogram once a year. My next appt is with rads, in March. I kind of wonder if that will be my last with them or if I'll continue to see them too.
My last day of chemo I remember getting weepy as I walked to my car. I felt like the medical team had all done their job. Now it was up to me...and the cancer. And that scared me.
Today was my first day taking ritalin for fatigue. Took it at 9:30 this morning and worked steadily throughout the day. My work was not demanding either physically or mentally--I spent most of the day cleaning up my office--but I felt sharp and had what I would consider a normal energy level the whole time. Never had to take a break at all, which is what used to be normal for me...I was always a lunch-at-my-desk kinda gal. I'm interested in trying it out on days that are more demanding. Feeling a little tired now, but it's after 6pm. Plus, the drug only lasts for 6-8 hours. If it can keep me functioning for 8 hours a day I will be a happy camper!
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Hope everyone's well as can be. I had a 3 mo follow up appt with my bs today. It did not go well. Without going into boring details ill try to explain. What happened has left me waking in the middle if the night wondering what to do next. I don't know whether to cry or be mad but I do know I'm upset.
He came in the room with only a clipboard not my file. He seemed off on biopsy dates and the size of my tumors and other details. I started asking him questions about how many positive nodes? Why did I need chemo with what it looks to be 1 node with microscopic isolated cells, was I a good candidate for reconstruction etc. i was typing notes of what he said into my phone's notes because some were things I hadn't heard before. While I admit it wasn't a brilliant thing to do with asking him so many questions I think I have a right to ask questions.
He left the room came back with both my path reports, an asst and told me to put my phone away that I didn't need to take notes. After the exam as he was leaving the room he said he was sure my Onc wouldn't have given me all that medicine if I didn't need it. He said my recon dr was a good one and he worked with him regularly.
I didn't mean to imply that he or any of my drs didn't know what they were doing but obviously that's how he took it.
When I was first dx I think I was in a state of shock. I didn't ask many questions and felt they knew better than I did. I said to him today that all I knew was that I wanted both tumors out!
I had called him months ago because my port refuses to draw blood. It accepts the chemo fine but they always want to see blood first. Every chemo I had to get the med that allows it to draw blood, get the bloodwork from my arm and it was a hassle. I had to show up about an hr early every time to allow for all this. I wanted to know if something could be done about it. He even asked me about my port today as if he was trying to ck to see if I was THAT patient who questioned him about his port placement.
He certainly seemed upset with me. Now I don't know whether to apologize or find another dr. Have any of you had this kind of experience?0 -
Wow Deb, yes, I have had similar experiences. My first meeting with an onco I was prepared with a lot of questions. He kind of laughed and asked if I was a teacher. I think we're all very frightened and vulnerable and it really threw me that he had an attitude. I did wind up apologizing by email. I thought that I may have come off as rude by questioning him so much. Now I see that was ridiculous. I had every right and reason to ask questions and so did you. I wish I could take my apology back!
I think these drs get hardened. What's routine to them is traumatic for us. Maybe it's their way of coping with what must be an extremely stressful life. I left that onco. We are not there to please them, they are there to save our lives! Don't let him intimidate you. I have been amazed by the carelessness and CARE lessness of several drs. Don't turn it around on yourself! Don't internalize their attitudes. Hope you find someone good.
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Deb-in-LA,
Don't cry, get angry (sung to the tune of 'Don't Worry, be Happy')
Seriously, nobody has the right to tell you when you should or shouldn't take notes. Even the best surgeons are off on their specs, and it is our job to stay on top of things. My hospital is big on 'team' but it took me a few months to realize that I am the team leader. I had to watch for errors, push for follow ups, and be responsible for my own treatment.
Even when my beloved PS told me that I definitely had enough stomach tissue to have the DIEP, and create a lovely new breast, I had to remind him that we had to create two lovely new breasts.
Was it the use of the phone that was bothering your doctor? My onc sometimes seemed impatient when I took notes, and sighed when I asked for clarification. My BS on the other hand would check my notes, correct my spelling, and draw little diagrams.
So it's up to you. If your doctor doesn't want notes - find a new doctor. Or, if you like your doctor, bring a friend in who will take notes for you. I almost never went to appointments alone. I realize that when it comes to medical stuff, I'm easily confused, and often don't absorb the entire conversation. My friend, or partner would take notes and we'd discuss them immediately after the appointment .
I agree wholeheartedly with Timbuktu - do Not turn this around on yourself. You deserve the best treatment , as well as a clear understanding of the treatment plan. You are not
merely a patient - but a participant in your own health.
Janet0
