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After treatment...what happens with support then??

Snoog
Posts: 3
Joined: Dec 2009

I have had unbelievable support when I was diagnosed, during my treatments and with
all of my appointments and I am eternally grateful to all of my family and friends
for all of that!! But now that I am "Cancer free" and not in "treatments" what do I do now?
I need more now than I did when in treatment and no one knows what to do? I can't find help with what I do with my messed up muscles,crazy thoughts and completely changes lifestyle...what do I do now??? where are they now? I can't find the help?? Any suggestions? What do I do physically to help my body,,how do I get myself back on track??

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

It looks like you have been a member for almost a year, so that's good.

It sounds like you are needing some emotional support and some physical help as well. Tell us a little more about the specifics on 'your world' and I am sure that some here will have suggestions.

Just off the top of my head, it sounds like you should see about a counseling referral with someone who deals with cancer patients. They will understand exactly how you are feeling and be able to help you get things under control.

The reaction of family and friends to your cancer free news is not unusual. They don't understand that getting to that state is only one part of the battle.

Marie who loves kitties

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

You called for help.....so many never allow others to help, that's not good when you alone have to deal with all the emotional and physical mending that goes on through and past this. You have made the perfect stride in simply coming in here where the answers are many and the feeling is so real. This is an emotional rendevous for anyone needing to escape the onslaught of cancer and all it bombards us with. Our friends in here are many, and they are sincere, and once treatment is over, we are still here. We know the feeling of being "thrown out of the house" feels like when all treatment and nurturing and everything done for you and let me help you with that goes away. Its a feeling of emptiness, actually makes ya sometimes feel like getting cancer back would get you some more of that good old attention you were getting, but what ya aren't realizing is....YOU WON !!!!! The game is over for now, so allow yourself to pick up the pieces and move on. Get back to the normal you once had....A life after cancer is one not to be lightly taken, because so few reach that goal. But the loneliness it causes when what we call "Life in the Fastlane" is done, and the feeling of being deserted is felt, then you have to sit back and realize that your not being deserted, your being given back what we all hope for, your life as it was. So please stay with us and relish the enjoyment and comrauderie we have in here. Its a fabulous time for such a place that no one wants to have to join...and the membership cost is sometimes very high, but its a place where all is loved and cared for, and now my friend, your life will change as well.....Love Hope and Friendship and cure for us all.........Buzz

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

And the new 'long-term survivor' board...

And, keep an open mind...I thought of it like graduating high school...glad to be finished, but scared to go on....

Be honest with your fears, accept that it's a new world for you. And, as I shared on another thread...if I got too nervous, I would call my oncologist, or rad oncologist, and start with "I know it's probably just canceritis, but....."

Congrats on coming thru to the other side...jump on in, the water is fine!! (6 years since dx, going on 5 years cancer free))

Hugs, Kathi

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I don't yet know the feelings you are having so I can't speak exactly to what happens after you are declared cancer free but, may I suggest that you check out the thread that was posted earlier today. It's titled Its 2 years since diagnoses... does it get any easier!? While it may not be your exact question, there may be some replys that might apply there for you too.

http://csn.cancer.org/node/205244

I can tell you that I too am concerned that the non-cancer people (for lack of a better word) in my life won't understand if I am able to get to the all clear, that cancer has changed me in so many ways ... mentally, emotionally, physically and I'm not going to be the same or feel the same but, I'm ok with that. What remains to be seen is if they can be ok with that too. You can definitely find support here as we are a great bunch that feels like family once you get to know us a little bit. We have some NEDs on this board that are living while being cancer free. Here on this site there is a long term survivors board that has just been opened. Maybe you can find some support there too?

Wishing you love and comfort. HUGS

mnmassie
Posts: 7
Joined: May 2010

I completely agree!! 4 years post treatment and still CA free.Great news for me! But.
I am generally someone who deals well with most anything. no one ever expects to see me flustered...in fact, my friends all thought that I went through CA treatments really well, and I did...faced it with determination and calmness. Get treated and move on....but I find the monkey never seems to get off your back. Post treatment arthritis and joint pain, still bouts of exhaustion - no one else really relates your issues today to what happened 4 years ago, they see you today....I have a couple of other people I know who are cancer survivors, as well as a job in health care where I see and talk to people every day about their issues.
I asked my friends, and even some of my patients, if the monkey ever goes away and they all said "NO". so, I get up every day and go through the motions, confident that most of the people I deal with every day have no CLUE how grateful they should be just to be alive and breathing!

so, to your point (and mine in a much earlier post on the page). As a previous respondant said...ASK FOR WHAT YOU NEED....see someone...talk to a complete stranger about how you should face the world each day. your friends and family love you, but they won't get it. not because they don't want to , but I think they are afraid. they don't know what to say or how to "help" you. Let them love you, give you a hug...tell them when you need one, but you don't have to tell them why...

there is not enough information about "post treatment" ailments. I even asked my onc about it and she admitted that treatment was centered on saving your life, not your lifestyle!! I find that this board has as much information from others as anywhere on the internet. I think that MD's are finally realizing that there needs to be more research done, but if it is being done, it seems to be in its infancy! I find that my physicians treat the issues I have one by one, and not as a whole.

walk around the block to clear your head, get out of the house, and relieve stress. exercise is good for all parts of your body, but especially your head!

sorry this is so long, but you have obviously hit a nerve with me. I have been saying this exact same thing to my health care team for 2 years....maybe we can change it...

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

mnmassie, I could have written your post!

My chemo ended in June, and as I regained strength etc I became an emotional wreck! Crying every day, lost, unfocused, frustrated.

why does no one talk about it and offer After Treatment care/counseling as a required step after treatment?

I called my Onc last week and got the triage nurse and she TOTALLY dismissed my issue of achy arthritic joints - unfolding myself from my desk chair and walking is such a challenge, I feel like an 80-year old woman isntead of 48.

Peggy

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Still stinks, but it's not unusual. Maybe try places like Gilda's Club or other support groups that hospitals often have. There is also this site which can help in many ways but it can't compete with interacting with people in the "real world".

I think many who have not been through this feel like that since your cancer is gone that things are back to normal. Maybe they are back to normal for them but I've found that I have a "new normal" and it's not the same as the old one.
-phil

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I saw a therapist shortly after i finished chemo, she was recommended by my Onc, she deals with a lot of cancer patients. She told me that most people seek therapy right after finishing chemo. I felt like after I was done with chemo that I was was not actively fighting my cancer and felt lost. In time those feelings fade, but I am grateful for everyone here for understanding when no one else could. Good luck to you

taraHK
Posts: 1961
Joined: Aug 2003

I also saw a therapist when I finished my treatment. That's when it all hit me. The therapist helped me a lot. Particularly when I said I felt like I something like post-traumatic stress and she said "you do". I wish you all the best.

Tara

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

My Onc recommended an Oncology Rehab program for my tiredness at the end of Chemo. There was a 10 week progam at the local hospital. Also, a local sportsclub offered a program for Cancer survivors. The exercise and meeting the other cancers survivors has been wonderful. I didn't think I could go because of urgency and frequency issues but it has worked out. I do leave the class as often as needed. I feel so much stronger mentally and physically - all because of the exercise. What a difference it makes!

I also started volunteering where I can for a few hours a week. I have taken my dog to a retirement center to meet the residents for pet therapy. I have volunteered for a few hours in a library. I have stuffed envelopes for MDA, etc. Little things like that helped me. I hope that you will feel stronger each day.

Lizzy

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