done with treatment, yet time to start dealing with it

Patteee
Patteee Member Posts: 945
edited March 2014 in Colorectal Cancer #1
Hi
I was diagonsed stage 3B on May 20, 2008. I have been through 2 surgeries at Mayo in Rochester, MN and 3 hospitalizations for chemo related reactions, 6 months of chemo- had my first CT post-treatment 2 weeks ago, already heading back to Mayo for hernia repair on July 15. I am struggling with chemo related issues; neuropathy that is pretty bad in my hands, chemo brain fog still and any form of exercise and I sweat like crazy. In many ways, it feels as though I still have chemo in my body, even though it has been 5.5 months since my last treatment.

I made it though the year from h*ll- we all do what we need to do, right? I think I was strong, other than physically sick from the chemo, I kept it together and did what I needed to do. Only, now I struggle.

Any suggestions for post-treatment counseling, support groups or something that helps for reconnecting with life again? I don't feel I can go back to life before May 20, 2008 again and I don't think life will ever be the same again, but what I have been through and the uncertainity of what lays ahead is definitely haunting me.

Thanks.

Patty

Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #2
    This is it for me
    Hi, Patty.

    This group has helped me more than anything. No one, not even my husband, can truly understand the emotions I go through sometimes, unless it's another cancer patient. If you have a local support group to attend, that would be helpful, too. I don't have one close to me.

    *hugs*
    Gail
  • kmygil
    kmygil Member Posts: 876 Member
    #3
    Post chemo days
    Patty. You are normal! Chemo is a two-edged sword, slicing the cancer but slicing our good cells, too. Unfortunately, most of us end up with various leftovers from chemo. I won't list my litany of post-chemo woes, but suffice to say that you are now moving into your new "normal." The sweats, the neuropathy the fatigue, the chemo brain, these are all "normal." However, there are a number of things you can do to mitigate them. First, your neuropathy may have gotten worse instead of better post-treatment. The good news is that this will gradually taper off. You may have to be on some meds like gabapentin (neurontin) plus high doses of Vitamin B6 to help with that. The sweats will also taper off, except that they will intermittantly continute to pop up for no apparent reason like hot flashes. Also, you may find your internal "thermostat" set higher than before and have a higher tolerance for cold (except for your extremtities.) Chemo brain also abates gradually, but now it is a habit with me to keep post-its, a small recorder or lists since it, too, has never completely disappeared.

    I did not seek counseling, but I was on antidepressants/anti-anxiety meds the whole time. Now, almost 2 1/2 years after my last chemo treatment, I am off the antidepressant, but remain on the anti-anxiety meds. I was already on antidepressants before diagnosis, and I'm sure they helped a lot without me consciously knowing it. The best place for me was this board. Perhaps professional counseling would have sped things up for me, but we'll never know. Good friends, this board and my dog were my treatments for this.

    We are all different and respond differently to various approaches. Going back to work full time and having other things to concern myself with about really helped me, as well. Doing projects at home was also helpful. I started small, since the fatigue ruled me for a while, then gradually increased the scope of these projects. For instance, going from organizing dresser drawers to organizing the laundry room. So give yourself a break and give it time.

    Hugs,
    Kirsten
  • VickiCO
    VickiCO Member Posts: 917
    #4
    New Program
    First of all, congrats for making it this far!

    My cancer center is offering a new program (starts in August) called "The Seven Levels of Healing". It is an educational and support system for cancer survivors and caregivers. It helps you deal with issues during, and AFTER, your fight. My oncologist signed me up as soon as he knew they were getting the program. It is two-fold - it will help me move on now that I am NED, and he feels I will be able to help and support those still in the fight. Look into it and see if there is a similar program in your area. I know this one is offered at many cancer centers, and it is free.

    Many hugs, Vicki
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    New Normal
    Hi Patty,
    I've been at this for over 5 years now and I am ahead of the game. I am still in treatment but we've been cutting that back and the few nodes I have left have been stable for about 4-6 months. I've been through 5 surgeries also. I've found that I have been through a series of what I refer to as "New Normals" and I accept that. This may not be other people's experience but it's been mine. After each major milestone I feel differently so it becomes normal for me. I don't think about what lies ahead either, no one knows what that might be and it's not terribly important to me at this time. I can't change it so why worry about it. What, me Worry? (as Alfred E. Newman from MAD magazine said). It may include cancer, it may not. I highly doubt that I will ever feel like I did before Feb 25th, 2004 again but I'm here now and loving it, pain and all.
    -phil
  • shoppergal
    shoppergal Member Posts: 118
    #6
    A new normal
    I have been finished with chemo for exactly 1 yr and I'm still trying to get used to the new normal me. I have had many side effects following chemo such as thyroid issues, rhematoid arthritis, neuropathy, chemo brain,and many more. No matter, what I realize that I'm alive and NED,so I have to learn to adjust to the new me. My body temperature has changed to the point where I'm always hot! Like someone else mentioned here, it's almost like hot flashes. I sweat all the time now, and everyone says we had a really cold winter here in NY, but I didn't think it was bad.

    I take Gabapentin for the neuropathy and it's made a big difference, although I still have it in my feet slightly. I'm also on antidepression pills which I didn't have a need for until I finished chemo.Not only am I on this board but I'm also on others, and I belong to a support group in my area. One of the things that is hard to adjust to is always feeling tired which is from a combination of things for me. So I've learned to relax when I feel the need to and I never feel guilty about it. My body has been thru so much and continues to go thru alot, so I deserve to do nothing when I feel like it!! LOL

    You've made it, that's what's important. It's just a matter of learning how to adjust to the new you, and you can do it. Good luck :-)
  • slbeaton
    slbeaton Member Posts: 1
    #7
    After treatment
    I was diagnosed with Stage 3 colorectal cancer in September and had surgery to remove a tumor that was causing a 98% blockage. I finished 6 months of chemo in May and was not prepared for the "after treatment" stage. I was so focused on getting through the treatments that it never occured to me that my side effects could (and would) get worse AFTER. My eyesight has gotten very bad, and I have constant pain in my joints. Neuropathy is still affecting my fingers and toes, but hasn't caused any serious problems. Exercise is helping some - I'm in physical therapy now - and walk daily. I can't help but feel like there should be a way to clean some of these toxins out of my body, but am a little hesitant to try some of the fasts. Any suggestions or comments are welcome!
    Sia
  • lesvanb
    lesvanb Member Posts: 905
    #8
    Post treatment and complementary medicine
    hi Patty

    Yes after treatment is a new phase (in fact it's now recognized by the oncology world with a name!-go figure :-). I have side effects from the chemo and probably radiation though it doesn't interfere with my daily activities. My best sources for help are varied. Pyschologically and emotionally, I belong to a couple of boards like this one which are invaluable because no one knows better what I might be going through than someone's that also walking the same path. Physically, and with my medical oncologists blessing, I have a team of complementary medicine folks–an acupuncturist, a naturopath and an anthroposophical/internal medicine doc. I honestly don't know how I would have made it through treatments if not for this team of folks who supported my body through all the western medical treatments which I also believe I needed to deal with stage 4. I am doing some detox with my anthroposhical doc and naturopath. Liposomal glutathione is the main one and is good for the neuropathy and detox. We haven't started on a major liver cleanse since I'm only 2 months out from my last chemo treatment and my body is still recovering and so no need to overwhelm it. I'm also doing yoga, and physical therapy which includes stretching, cardio and infrared treatments for the neuropathy. Though I have some yoga experience I'm in a beginner class because the teacher goes slowly and there's time to work with my body and its limitations right now. I think the best counsel I know is patience, and to keep moving with intent-emotionally, physically etc.

    all the best, Leslie

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