Why was I stronger DURING treatment than I am now?
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Jennie93 I agree with you, I hate it when the doctors say u will be back to normal. I want to yell at them cause nothing will ever go back, trying to get use to my new normal now. I've been reading the post and so glad I found this board. I am 5mths out from TC (six rounds) still on H, completed Rad (6wks) and now on tamoxifen. I was a emotional roller coaster, crying and short temper, but now on Effexor and it appears to be helping me cope. I just can't get a healthy sleeping pattern, taking melatonin hasn't helped and doc has prescribed sleeping pills but hesitate taking that too. I can fall asleep, but then wake up in the middle of the night and can't fall back to sleep. I just want to sleep through the night
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Katarina, after reading the article I feel much more relieved. I thought it was me and the SE of Tamox, I see now it is a large percentage of women who have problems. I have stopped taking tamox two weeks ago because I dont want to lose my job and i just cant function.
I will try another medication, most likely Anastrazole and see if it is better for me.
I am 46 and need the income!
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ML and Headeast, after my treatment ended my sleep was so out of whack. I think for me the sleep problems had to be one of the worst things I was dealing with. It created so many other problems. I would wake up at the dreaded 3:00a and have anxiety attacks. Very hard to get back to sleep after practically jumping out of your skin. The Tamoxifen wasn't making things easier as I had night sweats and other side effects. ML, I believe I took small amounts of Ativan to fall back asleep and although it helped in the beginning, I eventually l felt like I was dependent on it. None of my doctors were helping with the emotional roller coaster and I felt I had to wean myself off the Ativan. Needless to say, I did it too fast and that had it's own set of problems.
The Tamoxifen was going to give me around 3% more protection, but in the end I had to call it quits. I needed my mind and body back and had to heal emotionally and physically. With my stats below, I felt like surgery, chemo and rads were enough. I am back to my regular sleep patterns and I feel my life is back to normal. I had my dx at 46 (almost 47) and I now have my 50th coming at the end of the year. When family or friends ask how I am doing now my usual response is that I feel like a aged way faster then I would have. Not sure what else to say.
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Rock, I so understand what you are saying. I'm not on Tamoxifen but I am on the roller coaster!
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Rockym, how long did you take Tamox and how long ago was that? It is great news to read people with BC can have a life without Tamox. I have never taken drugs and that little pill has done a lot of damage in my body. It has been two weeks since I stopped taking it and still am sleepy, fatigued, achy, memory loss (I don't remember what I did an hour ago!) i hope I recover my memory and go back to my usual self.
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Headeast, I think I took Tamoxifen for about 2 weeks and it was after chemo and rads. It was around April of 2012, but my memory is shot if I don't go back and look at my records :-). I'm gonna guess that a lot of what you are feeling may have to do with your surgeries and treatment. I did the 4 T/C and although I was fine going through everything, I was a mess when the dust settled. The Tamox was just the last straw. Chemo brain is real! I play lots of memory games on my tablet and write down EVERYTHING now. I do feel back to my old self and it isn't any "new normal" crap... it's just me. I also get more fatigued then I did a few years ago and for sure the short term memory loss, but I try not to dwell on it.
Looking at your stats, it appears you have done more then your share to keep the cancer from coming back. I don't know your history, etc., but perhaps cutting out one part of the treatment (as I did) can get you feeling like yourself again. Life does get back, but our bodies are definitely changed.
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Been away from the boards for awhile but wanted to share something that some of you who are having anxiety or panic attacks might want to talk to an MD about. The breast cancer diagnosis and treatment caused me to have PTSD. My psychiatrist who is a well known and respected PTSD expert put me on a blood pressure medication that is now being used with vets coming back from Afganistan, etc. it is called clonidine and has been used for decades to lower blood pressure (I do not have high blood pressure). I was amazed that this harmless medication in small amounts could help me so much in terms of anxiety as well as sleep.
Hugs,
Peggy
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rock, thank you. Encouraging! I just received an email back from my MO saying to start with Fareston instead of Anastrazole. Yikes! My family doesn't want me to take anything else! They have seen first hand what happened this past six months while on Tamoxifen.
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My doctors all tried to make me feel like I was exagerating my post treatment health issues. They actually tried to make me sound like a hypochondriac.
They don't do it anymore.
If you face this problem take the Study and put it before them. Then inquire if "they've read it". If you doubt they have, then tell them your concerned about their capabilities and that you "expect" them to have read information relevant to their field.
There's no reason anyone should be made to feel shame for having a hard time post cancer treatment.
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My friends,
I cannot be the only one who finds groups of friends so difficult these days? People who talk about and expound on cancer, which they (fortunately) do not have.
People who talk extensively about children they do not have and how to discipline them/bring them up. I have 2 kids 20 and 16, yet spent half the night listening to people telling me what I should be doing with them.
It was so tedious, I just wanted to get home to my computer and cup of tea and peace and quiet.
Any one else?
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Katarina and all: A friend at work came by to have me sign off on a form for his wife. He told me she had breast cancer and had been telling her doctor that her leg hurt and she had mild dizziness. It was explained as "oh, just the aging process". Her words were ignored. My friend reminded me how important it is to be your own advocate as only each of us knows our own bodies. I am sad to say that his wife Cathy died of bone mets related to her breast cancer. Let our voices be heard ladies. Looking into his sad eyes, I silently promised myself that I would not ignore my current symptoms and get them checked out.
Wintersocks: I have a few "know it all's" in my life too. Computer and cup of tea sounds much more peaceful as does a massage and glass of wine. I find myself being much more selective who I share any information with (especially my aches and pains). I don't have children but can only imagine how tedious that must be. Tedious = boring, dull, mind-numbing, uninteresting, dreary. If anyone doesn't need that in their life it is US! right? I have always wanted to do this in that situation and I WILL next time. While the tedious person is talking, I will hold up a finger and say, " Can I stop you right there?"......then wait, there will be a pause ...and then I will simply say "thanks" and walk away. Join me?
Love you women.
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Purl51
Wonderful!!, love the finger thing! It would be so great to do that. heh heh! would so love to see that!
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Katarina,
I think this is a real problem in post cancer treatment. I have had a great deal of what now appear to be chronic health issues post surgeries/cancer/chemo.
I have been heard enough to be sent to many specialist and have been given various diagnosis such as fibromyalgia, orsteoarthritis, Hosimotos (thyroid auto-immune), etc.
None of these of course were related to my treatment. 😳
I have been told it was the sudden onset of menopause, aging, antibiotics, etc.
The fact that I had a bit of arthritis in my knee prior to chemo and now I walk and move like a 90 year old for an hour each morning, have chronic constant pain in joints, mostly hips, neck, shoulders and elbows and extreme unexplained fatigue in recent months seems to all just be aging or any of the above.
What is frustrating is I am not suggesting that I would have chosen a different treatment path had I known I would potentially be left with all these SE's but I do think that for the sake of science, accuracy in documenting post cancer care these should be rightfully seen as long term side effects of treatment.
When these began during my herceptin only infusions, after finishing my two chemo rounds the docs kept saying, no these are really not typical SE's of your treatment or herceptin. When I went on these boards and found many other woman with similar problems and shared this with my docs they said that I shouldn't use these boards because the people who go here are just the people who have problems and it makes it look skewed and like there are a higher percentage of people with these issues than statistically is true.
Really? I told them that given I was one if those (low statistics) of people left with long term and now apparently after 18 months from finishing chemo, I am assuming, chronic health issues I found it helpful to not feel like I was the only one.
Wintersocks, boy do I hear you. Just had a friend here for several days and she has a very (I mean VERY), difficult son. I think he has been diagnosed bi-polar, he is both physically and emotionally abusive to her, etc. he finally is away at college. Anyway, I find that listening and trying to be as supportive as possible the best way to be her friend. Yet, when she asks about the youngest of my five kids who is 20 and I answer honestly about the stuff in his life she raises eyebrows, etc.
She left yesterday and I am enjoying the quiet too.
So glad you all, and these boards are here for us.
Take care,
Julieho
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Purl - Count me in. By the way - which finger would you hold up?
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Janet, as usual, you make me laugh out loud!
At the last convention of oncologists here in the states ( can't remember the acronym because I can't remember anything!), there was much talk of "survivorship" and the issues it presents that we talk about here. I am hopeful that the tide is slowly changing and maybe more attention will be paid to it. So many decisions here, though, are based on the almighty dollar so that tempers my enthusiasm.
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It's been a few weeks since I've been here...I was starting to feel like I was finally moving on and getting back to "normal", and really wanted to think about things other than fatigue and chemo brain and cancer. I had a big fight with my husband a few weeks ago, and decided that I needed to see a therapist about the fact that I am not able to deal with his arrogance and lack of affection/appreciation/gratitude simply by ignoring it. The therapist *strongly* urged us to go to couples counseling, and we've been to our first session.
I am incredibly anxious these days. Sometimes it's because I'm ruminating about the issues with my husband, but sometimes it feels like it's purely physical. I have never considered before that I might have PTSD. I don't have nightmares, I've been back to the clinics many times (part of a clinical trial, not about BC) with no issues, but I am a nervous wreck. Today, even after my morning workout and 30 minutes of meditation, I was so anxious I meditated for another 30 minutes, then ran on the treadmill, finally tried to focus on my work and just couldn't do it. I feel like I have ADD...my brain does not work the way it used to. I got so frustrated I ended up sobbing my eyes out. Which is weird, because even though I've been anxious and angry, I've otherwise been cheerful and optimistic and not at all feeling depressed. It was sort of out of the blue.
So here I am, 2.5 years out from treatment, 10 years out from collecting social security, but I honestly doubt my ability to continue to work. Some days I'm fine, but so many days I just can't focus my brain. It could be that the anxiety is contributing to the lack of focus, which then makes me anxious, which just feeds on itself. The fatigue is finally, finally, fading, but it seems like when the fatigue lifted, the mental fog did not, and underneath the fatigue was this layer of anxiety. And then I feel terribly alone because I can't share this stuff with my husband (which is one of the reasons we're in therapy).Over the weekend I read a book called The Confidence Code, and really loved it, and it actually made me feel very confident and inspired. It could be that's why this is hitting me so hard today...I was ready to take on the world, but ended up just frustrated by stuff that used to come easy to me. I truly wonder if I will ever get back to "normal" again.
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I think a cancer diagnosis changes us for ever, whether we are willing to admit it or not, I truly hate the relentlessly positive prom queens!!!!!!
I am not the same at all and right now struggling to find reasons to make it worth carrying on, only my rescue animals keep me going, and I know no one else would be as devoted to them as me................
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((((cfdr))) *hugging you*
Quote I discovered from Jeff Brown reminded me of all of us.
“I know we often want it happy and positive, but that’s just not where much of humanity is. Many of us are overwhelmed with pain, undigested sadness, unexpressed anger, unseen truths. This is where we are at, as a collective. So we have two choices. We can continue to pretend it’s not there, shame and shun it in ourselves and others, distract and detach whenever possible. Or we can face it heart-on..., own it within ourselves, look for it in others with compassion, create a culture that is focused on authenticity and healthy emotional release. If we continue to push it all down, we are both creating illness and delaying our collective expansion. But if we can just own the shadow, express it, release it, love each other through it, we can finally graduate from the School of Heart Knocks and begin to enjoy this magnificent life as we were intended. Pretending the pain isn’t there just embeds it further. Let’s illuminate it instead.”
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Lily -- on behalf of the rescue animals....thank you for carrying on. You are awesome.
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i bet those animals love you like crazy! i love animals, but now am between them.... lost my cat to a car several years ago, he was an inside outside cat when i got him from a shelter, he was an older one, and rather set in his ways, so i can't get another, until i have a house it can stay inside of. we had him for 5 years, he was the king of our hearts, and you never saw such sad people....
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Purl - I like your quote. I think Oprah ruined it for all of us when we were brainwashed to strive for happiness and belief it to be the ultimate goal. In reality, life is hard and challenging with lots of broken hearts and painful challenges, interspersed with small moments of bliss.
I was so relieved when I understood this. The pressure was off to always be 'up' - or to think that there was something wrong with me. I treasure my joyful moments ( there are many) but no longer think there's something wrong when other days just feel like a whole lot of work.
Lilly - We need more people like you. Thank goodness you're out there helping the animals. My dog and cats are all rescues. On behalf of them and all the little creatures - thank you!
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Lilly - By the way, my dog Jed (a basset hound) had four lumps (benign) removed right after I had my double lumpectomy. He was't allowed to scratch so I dressed him in boxers, a camisole, and made a belt out of duct tape. We slept side by side in the living room. Jed got the sofa and I slept right next to him on a folding cot . We also covered the entire room in pillows so that if he got groggy and collapsed, he'd do so in comfort. I'd lie awake at night and listen to him breath. Jim, my partner, would sit in the armchair and watch us. We slept that way for a week and it was one of the sweetest times of my life.
So when I think about how shitty it is to have had cancer and a lot of surgeries, I also think about these tender moments that I wouldn't have had otherwise. Animals are the best.
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Janet: Your Jed story made me tear up. So So Sweet. Boxers and a Camisole.
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I saw my breast onco for a check up yesterday. I mentioned that Joan Lunden had a clean mammo and only discovered that she had a tumor from an ultrasound. I think the same thing happened to Suzanne Somers. He said he would not order an ultrasound for me. He said they usually work for younger people with dense breasts. But I'm Joan Lunden's age! He said if it turns out that I have Lynch syndrome I may need MRI's.
But ultrasounds are so simple! Why wouldn't he order one? Does anyone on here get them?
I'm really annoyed. Joan Lunden has triple negative and wouldn't know it if her dr hadn't given her an ultra sound.
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timbuk, i don't know, i always wonder about that, too. i thought that they did always did ultrasounds after a mammogram, especially when they wanted to take a closer look at something. i think i only did about nine mammograms before my dx. i wasnt doing them very often, because except for the first one i ever did, they ALWAYS did an ultrasound after, and i didnt know enough to know that they were always looking at something concerning. the thing is, that the place i went to, really smashed the hell out of my breasts. and i thought that was what a mammogram was supposed to feel like. i stopped doing them, because they always did an ultrasound after, and one time, my breast was hot and red, and i went there, and they did an ultra sound guided aspiration,not on cancer breast, and he said it was an inflammation. well it looked like two inches of pus to me, in a syringe bigger around than your thumb. i don't think he even tested that fluid, i swear i think i saw him throw away that syringe. and he got mad at me when i said are you sure its not an infection? no its an inflammation! he was pissed that i questioned him. and that was the last mammo i did for eight years before dx. because my breast was so painful, i did not want to do the mammo that time, but they insisted, and i begged them to go straight to ultrasound, cause they always did that after, anyway. no. so about a year later, i got a letter from them, saying there was an area of concern. i thought they were just trying to scare me into coming back, seriously, a whole year later? and so, when i found my lump on other breast, eigt years later,the surgeon told me it had been growing for about eight years.....AND, my mammogram at the new place i went, didnt hurt a bit. so i do wonder why they dont do more ultrasounds, too, caus they always do them for a closer look. maybe it is because they dont see anything concerning, but it seems like i have read here, many were missed by mammos alone. the whole thing is effed up. and what is the smallest one they can see? how many cells have to clump, and for how long? infuriating. sorry, that was probably no help at all. because ever fiber of my being, says i am having a regional recurrence, but they cant squeeze that part of my body into the mammo machine, and they wont put the ultrasound wand there when i ask them. so next week, i do get a follow up pet/ct scan. and if it is too small to image there, then i think they will be sure that i am the girl who called wolf.
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Tim and all: I just typed the following in Google and found quite a few interesting posts/links re: the ultrasound issue:
"why won't my doctor prescribe a breast ultrasound"
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kathe, it was helpful. sometimes I wonder about my own intelligence and sanity. I like to think that the world makes some kind of sense. But I'm seeing such craziness in the medical community. I think I should seek out a new dr. The one I go to has a great reputation, everyone goes to him. And he's extremely nice. But nice doesn't cut it when to comes to this. I want aggressive. I want caring. I want effort. I want to know why!
But i'm exhausted and depleted by the illness and the chemo. Brushing my teeth is a big effort. Hunting for new drs, traveling to them, etc. is overwhelming.
But my life might depend on it!!!!
I pray for a good PET scan for you, I think they are supposed to expose a lot.
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Timbuktu, Janet, Kathe, Lily, Purl, cfdr - so good to hear from all of you ladies again.
It is like having a letter from an old friend when I start seeing this board "come alive".
Lily I so get how you feel some days. And I have 5 rescue dogs and they have "surrounded me" literally and figuratively throughout this two year journey. Janet your story of you and Jed is just beautiful. I adopted the youngest of my five during my last month of chemo. She is what I call my "crack/chemo pup". My cousin literally rescued a litter of 5 week old chihuhua/terrier/pug/dachsund pups from a crack house and posted the litter on Facebook. I lay in my bed, sick as a dog from my 4th round of chemo (2 to go), with four motley mixed rescues scattered and drapped over me in the bed and wrote her back saying…"I'll take one". Next thing I know, three weeks later, two days after my 5th round of chemo my husband and I are driving two hours south to pick up this 3 lb puppy. I was feeling so down and as soon as I held the tiny pup I immediately felt better. I told my husband, she is my anti-depressant - I should call her Zoloft (although I actually wasn't on that drug). Anyway, we agreed we couldn't name our puppy after a pharmaceutical so the name Zola popped out of my mouth. And somehow this tiny thing survived growing up in my house with four other dogs ranging from a 20 lb jack russell mix to a 75 lb hound mix and she goes everywhere with me. She topped out at 11 lbs so she travels on planes and just hangs in my bag.
Purl I love the quote you wrote, thank you for sharing that. CFDR I so get what you posted and I may try to find that book the Confidence Code. I still really struggle with getting "back to normal" and just doing the day to day things that used to be so easy for me. Now sometimes if I have three things in one day I am just so overwhelmed. It makes me nuts. I had five kids, have always had 4 - 6 dogs, multiple cats (althought we no longer have any), we have horses, donkeys, goats, a small 60 acre farm to "manage" and I work from home as the communications and administrator for a small non-profit.
I thrived on multi-tasking. Now I am overwhelmed by having several appointments in one week. My mind still just jumps all over the place which makes writing for work very hard. Thankfully caring for the animals is somethings for the most part I still love doing and usually do not feel overwhelmed by but there are times where I start really thinking I should get rid of all the outside animals and make my life simpler.
Anyway, I may end up there but I feel like I need to give myself more time to "adjust" to this new life and normal before making any big decisions.
Timbuktu - if I still had breast I would be asking for ultrasounds. I have no idea why they wouldn't just do it even if they think it is not entirely necessary. As you say, it is a non-invasive, relatively low cost way of detecting cancers and even if the primary value is psychological first aid, I would say that alone makes it worth it.
I worked for 8 years as an EMT on my local ambulance service and we had extensive training in medical interventions yet always recognized that the most powerful of them all was providing someone in an emergency PFA…(psychological first aid).
Maybe try asking your breast surgeon to do it. I know my oncologist doesn't do that stuff but my breast surgeon does. I had a BMX, so I don't have any testing at all now. Sometimes I just wish they would give me one full body scan so I just have one day where I know I am completely cancer free. But, I get that scanning has not shown that they get better outcomes and there is a risk to a full body scan in terms of radiation exposure. So I have let go of that idea.
Love to all of you
Julieho
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That's a good idea Julie, I was thinking of going to my surgeon.
I had a CT scan and I know what you mean. After I had it I said "Now I don't need a colonoscopy, right?" Wrong. They said CT scans don't show things that are tiny! So even that one day of relief was a bit tentative.
Coincidentally I just finished Cindy Adams' book about here two dogs, Juicy, Jazzy and me. It is a sequel to her first book about Jazzy and not as good but it was so light that I would turn to it when things looked dark.
Anyone who adores dogs, I think, would appreciate it. Her dogs are her family.
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Ok just need to vent a little, so one of my friends posted on facebook about a dog needing a home the people had him for 8 years, she stated that that was cruel to give him up after that long, I made the comment that you have no idea what is going on with the owners don't judge. She said yeah I didn't think of that, she know that I have been through, one of her friends that I don't know from Adam's house cat chimes in to me, that's not a reason. I explained the person could be going thru medical problems and can't care for him, it would be more humane to find a loving caring owner than bringing him to a shelter for him to be put down. Oh lord she attacked me. I become the villain, she stated I had no idea what I was talking about there's medications you can take and you wouldn't give your child away you shouldn't do it to your dog.
I know first hand, how hard it can be, I have always had animals, however, when I was going thru chemo my puppy was making very sick, nausea, burning eyes, throat seemed like it was closing, so my sister very generously took my little puppy, and has spoiled her to the point I could not have ever taken her from her. She sleeps on the bed, stays in the house (she would have been an outside dog at my house), they take her to MacDonald once a week for a plain cheeseburger and when she wants she has 9 1/2 acres to run around on, spoiled isn't even the right word, my sister is also semi-retired she works 3 days a week. I go and see her all the time and my sister brings her to see me, but unfortunately it has not changed I still can't be around her or any dog for that matter for long periods of time. oh, our baby is a red and cream Siberian Husky she so sweet and so beautiful. My sister and I say that I'm the bio mom and she's the adoptive mom! 2 moms for the price of one! But apparently chemo has made me allergic or something to dogs, it just crazy. I still however, like a idiot tried to explain this to this woman, and she just continued with there are medications you can take, lady I'm already taking enough just with the freaking tamoxifen. Needless to say I told this woman you don't know me I don't know you let's just keep it that way I don't need your drama. Since this I don't say anything anymore I keep my thoughts to myself I just don't need it. I just can't believe how MEAN some people can be. Thank you for listening as always!
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