Why was I stronger DURING treatment than I am now?
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Hello,
Yes, I can relate. I was diagnosed in November of 2016. I went through five months of chemo, a lumpectomy and five weeks of radiation ending August 8th. I went through the steps just living in the moment and have gotten through. I now feel lost because it almost feels like I have lost my purpose or reason to live. I feel like now what? The idea of life is so scary because there is nothing planned for me. Everyone talks about how tough I was and inspirational, but I was just numb, and still am. It also angers me that they think that I got through it so easily when it was so incredibly hard. I want to know when I will be able to really grasp everything I have been through and then how to deal with the fact that I didn't die. Then there is the fear that it will come back and I have to go through this again. Thank you so much for sharing because in reading your story you helped me feel a little less alone and gives me hope. I am so sorry time has been so rough now I think it might be because in going through so much we didn't have time to deal about what we were going through and now that it is done our bodies feel it is safe to have them now. Which sucks, but part of the process. You are still a bad ass and no one can say differently.
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I am almost 5 years out from the beginning of treatment. Breast cancer.org pretty much saved me during treatment. After I started a program of healthy eating and exercise. I got in the best shape I've been in my life. When you are feeling lost, this is a good place to begin.
Hugs,
Pegg
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I found a website about survivership. www.ihadcancer.com
People write about their experience. One thing I hate was the term "New Normal". It got throw around like confetti. The New Normal sucks sometimes....
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Superius - Thanks for sharing the website about survivorship. This thread saved my life - so a whole website about having had cancer is a fantastic resource.
I'm actually okay with 'new normal'. I was so focused on getting back to normal and it proved to be an impossible goal. Hearing the phrase 'new normal' took a lot of pressure off, and gave me a much more accessible destination.
But you know what word I can't stand? Journey! It's such a puny word to use for the hellish rollers coaster we've been through. So, I've officially kicked it out of my vocabulary.
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Hi Janet, I just had to reply to your comment on the word "Journey"....I hate it!!....like seriously, I have a really hard time when people come up and wish me good luck on my "Journey".. I don't say anything, just smile and think to myself...yah whatever!! This is hell.
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It's more like a nightmare!
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I'm three and a half years out from diagnoses, PTSD hit me hard and I couldn't shake my depression for a good 6 months. I got better but I still have hard times. Cancer isn't for the poor and we are drowning in debt. I work two jobs and it's killing me. I'm depressed and I can't help but think that I worked so hard to save my life and this is what it is. I'm exhausted and broken and even though I have good days at times, I can't seem to shake this cycle.
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I finished chemo January 18th and finished radiation March 19th. Started Tamoxifen March 24th. I feel worse now than I did going through the treatments. Every joint hurts, my hands and feet are swollen and I feel like I am 80 years old. This all started about 2 months post chemo, yet my RO says it has nothing to do with the chemo....bullshit! Wondering if this will be my new "normal" and if it is, I am regretting my choices. This is miserable...
Going to try a 6 months PT program to see if it helps. Wish me luck!
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Littlebee - your experience is a mirror of mine, but I'm convinced it's the tamoxifen, as after all the problems are listed as side effects. I started 3 months post chemo. Your instinct to seek out PT is a good one. I managed to obliterate almost all my hand/foot probs with exercise (or at least down to a dull roar) Once I added weight lifting (even body weight) to my workout it quickly reversed the pain, muscle spasms and stiffness to nothing. If I take a break over 2 weeks from the gym they come creeping back. Hot flashes are down to about 2 a day...I can deal with that. 4 years out now and I feel better than I did in my 20s! I highly recommend a continuous workout program you can manage for anyone suffering from the pain/leg spasms/joint ache etc that tamoxifen (or even chemo caused) generously gives.
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Littlebee -
I understand what you're going through. I was there six years ago – and it still stands as one of the worst exeperiences of my life. Worse than worse than surgery, worse than chemo, worse than your worst breakup. It's hard, it's lonely, it's scary, its joyless, and there is nobody that can tell you when it's going to stop. I'd gone through treament and was cancer free and should have be on top of the world, but instead, I was lying somewhere on the bottom. And to top it all off, I felt like I was 90, and looked like my grandpa.
I was on this thread when I thought I was really going to go off the deep and - and I learned a few things that saved me. Firstly - post cancer recovery is invisible. We look normal, and dress normally (mostly), and give the impression that we are functioning adults when in reality we are falling apart. Nobody understood that I was living in my own fragile universe and that I could barely follow conversations, cried for no reason, felt completely despondant and just wanted to stay in bed. What saved me was knowing that I wasn't alone because it sure felt like I was. Suddenly being 'finished' with treatment felt like I was being pushed out of the nest when what I needed was support. Some days I felt like I physically needed someone to hold me up and help me to cross the street. And when I did start to heal (slowly, and invisibly) the process was very non linear. One day I'd think I see a feeble light at the end of the tunnel, and then the next day I'd be distracted, or helpless, or very very sad. And then there also the days I'd be a total raging bitch - unable to summon empathy, and wanting to punch my friends in the head for what I perceived to be trivial problems in their lives.
One of the ladies on this thread said that when we go through cancer we are warriors. We steel ourselves against the onslaught of tests and treatment with a steely strength that is summoned out of necessity. And once treatment is over and we go back to our lives we lay down our swords. And without a shield and or sword we are now vulnerable to the reality of our situation. The potentially life threatening disease, the invasive testing, the treatment, and in my case, a few surgeries. It all comes flooding in and it is overwhelming. And such a challenge to process that it can happen only a little bit at a time.
Basically, without any weapons, we get knocked down and have to rebuild in our own delicate non-linear fashions. My rebuilding was slow and painful but today I feel rock solid. I still have crummy days but I can handle them because I don't feel frightened or despondent. I'm on letrozol and there are days I look at my pill container and feel like throwing it across the room. I have joint pain but it is manageable and I work hard to stretch it away. Some days I feel resentful of what cancer has taken away. Some days I feel like it has given me perspective. I've had both self pity, and gratitude. I used to think about my old normal and my 'new' normal but now they've blended and I don't think about normal at all.
Post-treatment recovery sucks. It's awful. But it is temporary. It probably doesn't feel like it - and it certainly didn't for me - but it will get better. And it probably won't be straightforward. Good days and bad days. It's like learning to walk all over again but doing it with sky high shoes, potholes, and bottle of tequila. And one day you'll be back in your own shoes and the ground will be solid.
Here's a really great article.
https://well.blogs.nytimes.com/2015/03/16/lost-in-...
Janet
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Metoo14 - I feel the same way. There have been many times when asked myself, why did I fight so hard to live if this is the way it will be? I've really struggled with it. I've resisted the new normal concept because there is nothing normal about this. Maybe I need to revisit that thought. I honestly don't know how to do it. It's like I make 2 steps forward, and 3 back. This is not the life I fought for. I keep marching on because the only other option is going to bed and staying there. I've been through that before, and landed in the psych hospital. I refuse to go through that again if I can avoid it.
My therapist said that we go through the 5 stages of grief once treatment ends. I always thought the progression would be linear, but it's all all over the place.
LIttlebee - A few months after finishing chemo, my MO said the drugs were out of my system. BS! I'm about 3 years post chemo and my rehab specialist said that stuff is still in me. How could it not be considering how toxic it is?! One of the drugs is a derivative of mustard gas! It's a miracle that most people live through it at all, but here we are. Still, I feel pretty destroyed.
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Well, I made an appointment with my regular MD and .....surprise....she said she sees this alot...the joint pain after chemo. She also said it seems to run right around the time your hair really starts growing back. It's like your body goes into overdrive in the healing department. The bad news is, it could be RA (inflammatory) or Lupus (auto immune) so she did some bloodwork to see what is going on, but assured me that we would get to the bottom of it and would find some relief. FINALLY!
Its sad that my oncologist pretty much dismissed my complaints, but I am glad my MD is helping. The joint pain is horrible...especially in my hands and especially in the morning. I now have trigger finger in both thumbs...can't even bend them in the mornings. Ugh!
Egads007....I had the joint pain about 2 months before starting Tamoxifen, and it got worse day by day. I have been on Tamoxifen for 3 weeks now and really haven't noticed a difference.
Janet M....you pretty much summed up all of my feelings! You fight so hard for so long, and then all of the sudden you are done......and people expect you to be back to normal. They have no idea that our normal is gone....and replaced by a new kind of 'normal'...for us, anyways. It's frustrating, but it is what it is!
catlady44....I have a feeling that we will feel the effects of chemo for the rest of our lives in some way or another, unfortunately. But at least we are alive and kicking!
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Just chiming in - it is a long way back for many women post chemo. I had the terrific joint pain - still have some from the AIs, but right after chemo before I was even on the AIs it was terrible. I thought I was going to have to sell my 2 story house. I would stand at the top of the steps and cry almost every morning.
The good news - it does get better but for alot of women it is 18 to 24 months post chemo that things get better. That is my experience, my sister's experience, and the experience of hundreds of women who have written me over the last 6 years. It is 3 steps forward and 2 steps backward, but eventually, you will be in a different place but not the place you used to be.
All my best wishes!
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Hi everyone,
I am new to this group. I was diagnosed last May 2017. With stage 1 estrogen and progesterone positive BC. I had a lumpectomy 3 lymphoma nodes removed and radiation and now on tamoxifen. When I was diagnosed I was in shock. I didn't want anyone to know. I wonder if anyone else has felt like that? My family and close friends knew but I asked that they all keep it to themselves because I didn't want to be questioned or be told that I am so brave and strong. I didn't feel that way. I felt like I needed to focus on the treatments and getting better. I finally built up the courage to share with everyone. I've been on a rollercoaster of emotions this year. Some days I feel like I'm back to before I was diagnosed to feeling like I'm going to cry. I want the strong girl back but with the courage to share. Has anyone else felt like this?
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Helll Kay, I know how u feel. I was the same. I found it hard to share and learned that I like my privacy. I was diagnosed w stage 2 triple negative BC at the beginning of this year. I went thru a lumpectomy and just finished chemo. I go thru radiation next but I'm in this funk like, where do I go from here? I am most definitely not the person I was before this so I find myself asking, now what?
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I am over 5 years out from treatment and NED!!! I finally found the silver lining to the negative emotions I felt for some months after treatment.
This year was one of the worst for me since bc. (Promise this is not a a downer NOW) First my 11-year old grandson was diagnosed with acute lymphoblastic leukemia and started treatment this past October. He went through a hellish chemo regimen (sometimes 5-days a week for months) for a year. He is now okay but will receive "tx light" for next two years.
He is my heart--he saw me with no hair and extreme fatigue during and after bc treatment. It helped him to know I understood first hand what he was going through.
Then my husband was diagnosed with Parkinson's in the spring. He is doing better now that he's on right meds. It hangs over both of us since it is an unpredictable neurological disease. (Remember the relief after dx that you and I felt when we got a definite treatment plan.) Not so much with Parkinson's. But our marriage is stronger than ever since his dx.
Then Hurricane Florence hit our home in Wilmington NC in September. A quarter of our small retirement house is gone and insurance company fights continue.. Right after I saw the damage (we had evacuated), I drove on an errand and had a bad car accident. I was the only one hurt but I am having chiropractic treatments for the pain. All in one year!
But, and this is the heart of my message, I am coping pretty well and some days I am absolutely happy. And most days I am okay. I attribute so much of this to the support and information I received on this and 2 other topic boards when going through bc, including the after tx blues. I want to thank every one of you for this!!!
You will find silver linings too. So just love yourself as you are right now! Loving your hurting self is how seeds are planted for future happiness. (A GOOD PTSD therapist can help at times.)
Love you all,
Peggy
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PeggySull...I haven't been on this board in a while...I will be 5 years from diagnosis this December and praying I am NED! I am sorry for your tough year...I am in Hampstead, NC and the storm sure did a number on our area...we are finally getting back to a new "normal". Thought I would reply to your post as you are in the next county over from me and I wanted to say hey! Rosie
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I have been checking in on this board after not being on for a while! I was diagnosed December 2013 and this December will be my 5 year mark after diagnosis! I see so many familiar names, PeggySull, Wintersocks, Purl,...JanetM...your posts are spot on...and insightful...thank you. I have been on anastrazole for 4 years, first year after treatment was tamoxifen
I am doing well on it, I think?? I do continue to take claritin every night for bone pain. I just thought if it helped after Neulesta, then it may help with AI drug too. I also have allergies so I would have taken it anyway!!
I will say that neuropathy, especially in my feet, has gotten worse the past 6 months. My MD has been most attentive to any issues I have and I don't think ONC will ever say it's from chemo. Neuropathy hits a lot of people, diabetics especially. But low vitamin B-12 also causes it as do other meds I may be taking. Just wondering if anyone else is now suffering from peripheral neuropathy, numbness and tingling in feet especially at night!! I believe Taxol is the drug that can cause it. Thanks for any input on this and happy to see so many on here supporting each other. Rosie
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Hi Rosie, I thought I'd let you know, you are not alone with the peripheral neuropathy! I do think mine has gotten worse, not better, since my chemo in 2015! Most definitely caused by the 2 different kinds of chemo I had, first TAC, then Xeloda, an oral chemo. I describe it as like wearing socks made of biting ants! Most annoying at night.The only medication that has helped me at all is Gabapentin, and only when we bumped the dose up to 600mg am.900mg pm. I also recently started using CBD salve on my feet and hands for the pain. It's made from cannabis, which is legal in California. But no psychoactive effect, just temporarily less pain. Happy Thanksgiving!
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