Is this really it?

I am struggling super hard with life after everything. I guess I'm a rare breed because I haven't met anyone or heard from anyone that I connect with who can help me through this all. I am 5 months out of treatment, I knew I'd have regular follow ups and stuff but I, for some reason, thought that once I finished the stupid chemo and radiation that I would be me again. But now I have lymphedema, a different body, my brain is foggy all the time, I'm slow and forget everything, I am unbelievably depressed, I feel so alone and I have felt so alone throughout the whole thing. I am not even a percentage of who I used to be and I am ashamed of myself for even doing the stupid treatment in the first place. I don't know what to do and I don't know how to get back to me. I used to be strong, smart, fast, caring, aware, functioning, flexible, unstoppable... so I thought. But chemo and radiation stopped me. I used to be a super hero and now I'm a useless blob and I think that's destroying me... If there is anyone who feels the same, felt the same, was the same, knows the same, and can provide any sort of guidance... Even if it's a simple "Hey, in one more year all this shit will fade away and you'll feel like yourself again." That would be tight, cause right now I am not doing well and don't know where to go from here.

Comments

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  • juls4juls4 Community Member
    I was extremely lucky to have an easy recovery from chemo and surgery for breast cancer and I never had radiation, but what you describe is what I worried about every minute of the day during all of treatment. The only two things on my bucket list were having children and continuing a physical career I loved (horticulture) that I had only just started. Right after diagnosis I found out I would probably never be able to have children or even freeze eggs and I'm still dealing with that loss. It's overwhelming and I was so frustrated when friends or family would try to keep me postive by saying "if you get lymphedema it won't be that bad, at least you won't have cancer" or "so what you can't have kids, just adopt". Or they'd suggest I just get a different career if I had to. That was who I was and were huge parts of my life! I never understood before cancer why someone would ever opt to not have life saving treatment, but I understand now. What is life if your quality of life is really poor? Doctors think they're successful when they remove the cancer, but don't pay attention to what's left of the person afterwards. No one was able to help me with that, not doctors or therapists (although I have friends who swear by therapists so it may be worth a try). What has helped me is to break down the issues and tackle each one by itself. If I had gotten lymphedema and couldn't use my right arm well, I couldn't have continued working at a plant nursery because I use my arms constantly. My plan was to grow plants at home using drip irrigation and whatever tools I could to avoid using my arms. I talked to teachers at the local university and having that plan helped me deal with the loss and take control of my life. I was prepared to work an office job to fund this project because I knew the end goal would make me happier.

    I would also talk to your doctor about anti-depressants. They get a bad wrap sometimes, but I have been on and off them most of my life and find them a very helpful tool. If you're on the right medication, you shouldn't feel numb, just less stressed and unhappy. It's not a complete solution, but it can quell just enough of the negative thoughts to allow you to enjoy life again.

    I also find I'm really forgetful, especially when speaking. I often can't remember the right words to use, or names of people and places I would normally remember. It's been helpful to me to just be honest with those around me by saying "you know that place, where that thing happened...hmm what was it...wow and I thought my memory was bad BEFORE chemo" and then I laugh and the other person will help me remember. I feel better knowing that they are aware it's the chemo and not just that I'm stupid. No one is going to judge you for side effects of a necessary treatment if you take the time to explain it to them. They may also turn out to have cancer stories of their own to share.

    You say you have a different body. Care to share how it's different? If you feel overweight or just tired, maybe come up with a plan to exercise more incrementally and set short term goals that will make you feel like you accomplished something? There are often discounts available to gyms for cancer survivors. You could find a friend who has exercise goals and work together. I struggled with feeling feminine and attractive because of my inability to have children, my mastectomy, being bald (after a lifetime of long hair), and knowing my ovaries needed to come out soon. I've found that by just owning it and walking with confidence into a room (often I fake my confidence), it changes how people see me and I get a much more postive response than if I walk in a room looking unhappy and tired. That positive response then makes me feel good and it's like I created happiness for myself. If you expect pity, that's what you get. If you expect to be treated normally, that will happen, even while wearing a head scarf.

    Lastly, maybe think about volunteering. It is a way to make your life have meaning. You could look on meetups.com for local groups that share your interests or spend time at a church, animal shelter, or any town group you can find. A great way to connect with other human beings is to share a common desire to give back. Sounds like a plan for someone who used to feel like a superhero! If you can take back your life from cancer piece by piece, you may also be able to help others do the same with whatever their life challenges are.
  • Hey there, I am brand new here and yours is the first post I've read. I think that was for a reason. I feel very much the same as you - down to the lymphedema and all.

    In the last few months I've had good days and bad days. The latter are very, very bad. The chemo (five months of AC/T in 2016) left me very foggy, and now I'm in hard-core menopause at 42 thanks to chemo and Taxmoxifen, and my brain just NO WORK GOOD NO MORE. The difference is profound. Again... some days my executive function is good and I can string together normal sentences with big words and such, and other days, I can't follow a basic conversation. Very, very foggy! Exercise helps. I walk.

    Lymphedema also has a very discouraging effect on my mood. If I'm having a flare-up, I can feel hopeless, and so few people understand. Even my physical therapists don't have a first-hand understanding of what it feels like, and how scary it can be, and how upsetting it is to think of something as chronic. I had a lovely therapist just this spring who upset me terribly as she talked about compression during all waking hours, as if it is an easy thing to accomplish and to bear, day in and day out. It is hard. It is uncomfortable. It is different, and people notice.

    I could go on and on and on. :-)
  • MHoodMHood Community Member, Moderator
    A lot of people I have talked to, talk about the 'new normal'. I am 9 years out of treatment and I am not the same person I was before and I never will be. I have come to learn and accept my new normal. I choose to focus on the things I can do instead of the things I can't.

    You are only 5 months out. Cancer treatment is a trauma to your body. You wouldn't accept to be 100% perfect after a car accident. It takes at least a year for your body to heal. That's what my doctor said and I found it to be fairly accurate.

    Hang in there, it does get better. You have a community of people here who are happy to share their experiences with you.


  • fullearfullear Community Member
    Hi I'm writing from Malaysia. I am a 48 y.o. male diagnosed with stage 3 nose cancer about a year ago. I didn't go for the chemo/radio treatment, although that what my doctor asked me to do. Instead, I am trying to heal myself by eating right and changing my lifestyle. Nowadays, I don't eat meat, white sugar & every man-made foods. Its not easy. I lost a lot of weight, 25kg to be exact (about 55lbs). I'm also on a herb regiment from a herbalist in my country. he prescribed me 4 types of herb capsules & 3 types of herbal teas for me to take daily (cost me about USD270 per month). The capsules I can take no problem, but the herbal teas tastes awful. But I can't complaint, trying whatever it takes. Anyway, it seems to be working for me because now I don't suffer from double-vision anymore, and my "full-ear" feeling is also gone. I guess, this big C thingy is treatable with methods other than chemo/radio.

    In my search for treatment, I found a person online from your country who is a 10+ years survivor of colon cancer. He has lots of information on methods to feed your body the natural way so that it can heal itself from cancer. His name is Chris Wark at chrisbeatcancer.com you should check him out.
  • I am now five months out from end of active treatment and I am amazed at the difference each month brings to my body in terms of healing. My husband kept telling me, when I would be discouraged and frustrated about consistently feeling poorly, that my body was through a "shock" and it would take months and months to get better. He was right. It takes time. Cancer treatment is huge. I think if you haven't been through it, you simply can't understand (even doctors) what it feels like to shock your body for months and months with procedures, chemo, radiation, etc. Time will help you!! :-)