against the odds-lucky but not so lucky

sunrisejean
sunrisejean Member Posts: 2
edited March 2014 in Emotional Support #1
Hi, I just joined today.
I have had cancer 2x. The first time I had surgery and was told 'not to worry' little chance it will come back.
4 yrs later...30% chance of survival, and told if it comes back again they will just send me home to die. Now, 2 yrs and counting. still have all my fingers and toes, but have lost so much that I can't explain to husband, or son. I am grateful, and angry, depressed, and confused. And then there is Chemobrain..short term memory/new learning both seriously challenged, even 2 yrs later, and so tired,
lost my job when diagnosed, now can't find one, and the medical bills still hanging out there...ugh! enough complaining, but it is all bottled up and no where to dump it. I really need to find people who 'know' the story. Anyone?
Jean

Comments

  • Morning sun :-) Welcome to csn. Come join us in chat...lovely folks there.
    I had 3 cancer diagnosis over 10 years.
    It all started over 21 years ago.
    Then I lost my hubby to cancer...(I got cancer and he got LOST...LOL).
    Single parent, disabled, no money, yadda yadda.
    Thought I was a goner. Not so. Still here and in a better place than ever before. (Good health, stable finances, simple life.) You just never know what God has in mind or how he is going to work this all out but he does. In the meantime we just have to take one day at a time and do the best we can with what we've got. Best wishes and God bless.
  • terato
    terato Member Posts: 375
    Jean,

    You can take what Zahalene says to the bank! You never know what the next phone call, letter, or e-mail can bring to turn your life around. I started fighting employment discrimination against cancer patients just by writing letters in 1985, in response to an article I found in a newspaper sitting in the day room of my treatment center in 1984, and wound up receiving tribute from a Congressman in the U.S. House of Representatives a year later! I'm a footnote in American history today with my own copy of the Congressional Record featuring my tribute on my bookshelf! I even received letters from fellow cancer patients, Ronald and Nancy Reagan, which I have in frames on my wall. Go figure? Not everything coming from your mailbox has to be bad news. Have faith!

    Love and Courage,

    Rick
  • sunrisejean
    sunrisejean Member Posts: 2
    Thanks for your replies.
    It's good to know I am really not alone, even though I feel that way.
    Hubby has been gone for 2 weeks on a business trip, and my son is 'too busy' to call or stop by. He has his own issues to overcome.
    There is no othere family, and no local support group. Hubby wont be back for anonther week.
    Even though I have alot stacked up against me I know that this is temporary and will change.
    I want and need to learn more about the long term after effects of chemo and how to deal with them. I am working on that so I will make progress. I am hanging on to that idea for today. And I welcome any tips or leads, or knowledge.
    Thanks
    Jean
  • davidsonxx
    davidsonxx Member Posts: 134

    Thanks for your replies.
    It's good to know I am really not alone, even though I feel that way.
    Hubby has been gone for 2 weeks on a business trip, and my son is 'too busy' to call or stop by. He has his own issues to overcome.
    There is no othere family, and no local support group. Hubby wont be back for anonther week.
    Even though I have alot stacked up against me I know that this is temporary and will change.
    I want and need to learn more about the long term after effects of chemo and how to deal with them. I am working on that so I will make progress. I am hanging on to that idea for today. And I welcome any tips or leads, or knowledge.
    Thanks
    Jean

    You may want to try the chat room. It's a great place to vent or ask questions. There are also online support groups you could check out.

    There has been a few posting on the colorectal message board about chemo brain and other long term side effects. You might try searching the message boards for suggestions. Here a a few things I did to help my chemo brain. I like puzzles so I did/do number puzzles to keep my brain working. I also write things down more. I used to remember everything but now I need the reminders. The little sticky notes worked great for me. I could stick them up where ever I needed a reminder. I am sure you will find other suggestions in the message boards. If you don't find anything make your own post asking for suggestions on the board for your cancer. I'm sure someone will respond.
  • haroldbk
    haroldbk Member Posts: 1

    You may want to try the chat room. It's a great place to vent or ask questions. There are also online support groups you could check out.

    There has been a few posting on the colorectal message board about chemo brain and other long term side effects. You might try searching the message boards for suggestions. Here a a few things I did to help my chemo brain. I like puzzles so I did/do number puzzles to keep my brain working. I also write things down more. I used to remember everything but now I need the reminders. The little sticky notes worked great for me. I could stick them up where ever I needed a reminder. I am sure you will find other suggestions in the message boards. If you don't find anything make your own post asking for suggestions on the board for your cancer. I'm sure someone will respond.

    I've just heard the term Chemobrain for the first time and it's a mess. My wife had gone through 7 months of chemo Taxol/Avestin/?. Now, she has no energy, can't do simple things like eat with a fork or remember dear things like the names of our grandchildren.

    I pray that it's temporary as many have stated.
    I'm feeling stressed about this and I know Sharon's not happy.
  • TereB
    TereB Member Posts: 286 Member
    Hi sunrisejean,

    Having cancer is a scary experience for everyone. I have a rare one for which there is no cure but it grows slow. Because I go for follow-up tests often, two different cancers were caught in the early stages so all I needed was surgery. For the rare one I have radiation sometimes. I think I've had so much radiation I glow in the dark, he, he, he. I had trouble with my memory, forgetting all sort of simple things and it scared me because I've always had excellent memory. I was also tired most of the time. At first I assumed I had rad brain and I tried doing crossword puzzles, jigsaw puzzles, wrote notes to myself, made all sort of lists, etc.

    Years later I found out I was depressed. I didn't think I was because I was feeling OK, just tired, bad memory, no appetite, etc., not sad, not crying, etc. but I had all the signs and some of those signs are forgetfullness, being tired a lot, no appetite, etc. I started taking Prozac, my memory went back to normal, I had more energy, I was not tired anymore and my appetite returned. With depression it is not always about feelings but could be your brain is not doing the proper connections or there is some chemical imbalance. Antidepressants help a lot when you are in therapy. I never would have believed it and I'm still amazed at the results.

    Sometimes our families and friends do not understand how we feel when we have cancer, the surgeries, the treatments, etc. Your feelings are all normal but you need to deal with them so you do not get stuck there. Have you thought about therapy? Many oncology depts. have someone that can help you deal with all of this. Therapy helped me a lot.

    Have you tried the survivors chat room? They are usually nice and understanding. They are good giving support and many have gone through the same things you have. Maybe you can vent there and it might help you to not keep all this bottled up because that is not good for anybody.

    Don't lose hope!! Zahalene and Terato are right, Take one day at a time.

    All the best,
    TereB
  • blueroses
    blueroses Member Posts: 524
    chatroom support
    Hi and welcome. You might try to come into the chatroom when you feel like you need to talk through things concerning your situation. You will find many people in there, survivors and caregivers alike, who will understand more of your feelings than you can imagin. Hope to see you in there at some point. God Bless.