Surviving, and the long recovery

RPStumpf
RPStumpf Member Posts: 16 Member
edited December 2023 in Breast Cancer #1

I'm sitting here tonight, 6 months after finishing my treatment for triple negative breast cancer, feeling gratitude for life and the cancer being gone. I'm looking for wisdom and encouragement about what it looks like to live as a cancer survivor. I need help managing expectations.

The treatments saved my life, but they also did some damage. The symptoms are gradually improving but I think I expected to bounce back quicker. I'm experiencing weakness, and awful pain in my feet, ankles, legs, knees; and my hands and fingers sometimes ache. The side effects caused me to need a cane to walk, though I haven't needed the cane for a couple of months now. I'm still so easily tired, my depth perception isn't what it was (you don't want me backing up a car!!), I don't think as fast, and I have some lingering pneumonitis from either the chemo, the radiation, or the Keytruda. The lumpectomy site is still tender, a year after surgery. So many little issues in addition to these things.

On the upside, my hair has grown back and continues to fill in! I like it short, and the natural gray is awesome. :) And in spite of everything, I would do it all again. I thank God that I am alive right now.

However, I wonder: How long do the lingering side effects go on? Is this my new normal, or am I on the way to a new normal? Your insights would be so helpful. Thanks.

Comments

  • Sunshine10a
    Sunshine10a Member Posts: 13 Member
    #2

    You’ve gone through a lot, it’s going to take some time to get back up and running. Take it one day at a time, slowly, with time, things will get back to normal and then there will be things that might also change but remember , change isn’t always bad. Sometimes scars are reminders of how bravely fought, not that we got hurt. Chemo and all the accompanying drugs are really aggressive and so it will take some time. Do things you enjoy…smile.

  • thelazyaranch4
    thelazyaranch4 Member Posts: 35 Member
    #3

    I do not have wisdom to share but I do have comfort to offer in the fact that you are not alone. I have gone through everything you did and also a local recurrence only 3 months after finishing all treatments. I feel the same as you, completely drained of everything. I am very hopeful for both of us that one day we will feel close to our old normal:)

    hugs to you and anyone else like us!

  • mvpvasquez
    mvpvasquez Member Posts: 1 Member
    #4

    This is my first time on here and already Sunshine 10 ‘s words …” Sometimes scars are reminders of how bravely fought, not that we got hurt” touched my heart. My moods are fluctuating more than my physical symptoms. On 11/29 I had a double mastectomy. On 12/28 chemo starts. All the lymph and margin results are negative. I have reasons to be happy. But for now maybe feeling grateful is enough ?? Ty.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #5
    https://csn.cancer.org/discussion/comment/1711339#Comment_1711339

    I am SO HAPPY to hear your lymph system and margins were clear -- that is a really good baseline from which to begin treatment. And that said, you are completely validated to be having fluctuating moods. You've just been through a heck of a major surgery, and I'm sure a stressful precursor period leading up to the uncertainty you initially faced, with regard to what even to expect from your personal recovery. My own moods have got more swing than a Saturday playground - I hear you!

    I have to remind myself to also be grateful - while I did have a positive sentinel node involved (subsequent additional nodes and bilateral mastectomy and re-assurance re-excision 10 days later yielded clear margins) - but I feel trepidatious about all of the ensuing treatment - radiation, lupron to shut my not-ready-to-retire reproductive system down abruptly, and 10 years an an aromatase inhibitor... let alone what on earth my life will resume like, given I had already been dealing with hoopla prior to this health shocker.

    So I support compassion to ourselves - however things truly make us feel at any given moment right now is probably normal. I'm praying for your speedy jump back to your full life. It sounds like you've got a great prognosis.

    💛

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #6
    https://csn.cancer.org/discussion/327423/surviving-and-the-long-recovery

    Might you have access to an integrated cancer care specialist through your hospital network (it may be called something else by you) that your insurance will cover? I learned there was such an offering by me, whereby they provide mind and body holistic and physical therapies designed to ease the after-effects of treatment. I'm sorry to hear you're experiencing these ailments. I hope you will find relief.

  • anne333
    anne333 Member Posts: 13 Member
    #7

    Hello. I'm a year out of treatment. Most of my side effects are gone, I'm thankful to say. I sometimes have brain fog but I can't tell if that's chemo brain or just aging. However, I still feel shellshocked emotionally. Sometimes I'm totally fine and can even 'forget' for a minute that the whole thing happened. And then I feel guilty for forgetting, because I want to have learned something from the whole dreadful thing--to be a better person, to not take life or my health for granted, etc. One thing I'm trying to do is to be a little kinder to myself, to be more patient, to realize that I've just been through hell and back and there's no right way or wrong way to feel about any of it. I hope you get some relief from both the physical and emotional side effects. I hope it helps to know that you're not alone. I'm right here with you.

  • RPStumpf
    RPStumpf Member Posts: 16 Member
    #8

    Your comments are so helpful. I see my oncologist and my surgeon next week-- time for checking in-- so I will ask about supportive care that might be available. Brain fog has been kicking in, making me a little anxious, but I have decided it is a signal telling me to slow down and rest; basically trying to reframe it as a friend, rather than an enemy. It seems to help. Wish I could hug you all for chiming in!

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member
    #9

    @anne333 Thank you for what you shared. We’ve definitely been “through hell and back” and it would be dishonoring to consider it too lightly.

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