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After Cancer.... Now What?

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I know that we mostly post about our fight during our cancer treatment but I dont see a lot of postings about the fight we go through after we won the war. So far so good on my bone scan, CT scans, Colonoscopy, and blood work. Dont get me wrong, I thank god every day that my cancer is gone but I still have so many issues.
Fatigue
Memory and concentration changes
Pain
Nervous system changes (neuropathy)
Mouth or teeth problems
Changes in weight and eating habits
Bladder or bowel control problems
bowel problems

It just seems to be a everyday fight. Does anyone else have any after cancer issues?

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

getting my bound for Texas bag out right now.....oh wait....just a few ct's, and radiologists and liver surgeons and onc first.....hahah

sure i can make by winter....got your hand....thanks Craig

maggie may

AnneCan
Posts: 3692
Joined: Oct 2009

You cannot be thinking of leaving me here in the cold while basking in the Texas sunshine - can you?

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

of course my darling girl I won't leave you. We will lump along in red Olympic left over mittens, sorels, toques and balaclavas, goggles for really snowie days....parkas snow pants and block heaters on the car

haha I'll stick with you kiddo

maggie

AnneCan
Posts: 3692
Joined: Oct 2009

Glad you are not leaving on a jet plane. I am going to have to buy most of that stuff you are talking about so we can commisserate (sp?) over the winter.

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

thank you to all who have responded. I too hate the LIve like You are Dying Song....I too am not sure how to live life to the fullest....I am not wise or enlightened

That song drives me up a wall now. I think because it seems to be so trite, in light of all of our battles. The words and the sentiment seems hollow if you haven't walked the walk. Maybe because it's one thing to say live each day like it's your last, well hell, many of us have been in sooo much pain, it'd be a welcome relief! Knowing it's your "last day" wouldn't motivate me to be happy and carefree and wanting to do something on my bucket list, it would scare and depress the heck out of me, so that's probably why I HATE all those songs and sentiments and cliches that talk about living each day as if it's your last.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I have to say, I've never heard of the Live Like You Are Dying song, and I'm starting to think from this thread, that I'm almighty GRATEFUL I haven't. (mostly because I'm still the onery set in my ways, road rage biatch that I was before cancer, although Lord knows, I tried to be kinder and gentler, it just didn't work out quite right)
LOL
Winter Marie

AnnaLeigh's picture
AnnaLeigh
Posts: 185
Joined: Jan 2010

Could our dilemma be caused by the loss, death and grief of our delusions about the process of life just when we thought we had it all figured out?

Our priorities have been turned upside down and we have viewed life from an angle not seen by many people. As someone so profoundly pointed out - "Cancer is like being chased through the jungle by a tiger. You know at some point the tiger will catch up to you and you will always be looking over your shoulder wondering where the tiger is lurking and how close he is to pouncing". Therefore it's not unusual that we would feel like outsiders or feel as if other people can't possibly understand how and why we have changed.

We were taught to believe that we could achieve anything in life if we focused our minds and worked hard; that being strong was the equivalent of not showing the emotions that come naturally to us as human beings; that complaining about our bodily aches and pains was a weakness; that the strong will prevail and the weak will get left behind; that we have options and choices about our future; that we have control over our destiny; and foremost - to never show fear.

And now my friends- we know for a fact - there is no such thing as control over our future. We can work as hard as we want and this does not guarantee success because our lives and futures can change in the blink of an eye; success or loved ones can be taken away in an instant; human bodies are fallible and will decline and yet society praises only the healthy, strong and virile while shunning the frail; being stricken with an illness is not a weakness of mind or a weakness of body; and no amount of gratitude or positive thinking will change the outcome of this disease (it can only bolster us to co-operate with treatment and help us keep plodding along).

Life on this earth is not predictable, and never has been, despite how much we have been taught to be goal oriented, grab life by the horns, or "go for the gold". There have always been dark clouds on the horizon that could easily turn into a life-changing event. We, as a society, have simply learned to ignore this possibility and have become so focused on achievements, instead of our connections to one another, that there has become a "disconnect" to ourselves as human spirits. Human spirits with the capacity to experience every conceivable emotional paradigm that has ever existed. Including fear and grief - the most avoided emotions of all since they are labeled as unworthy and weak.

Our journeys here on earth are not tidy little bundles to be organized, planned, scheduled and predicted. This is why so many of us find we have family members or friends who can't deal with the heartache of this disease. They are simply not ready to accept or deal with our new vision of life as being unpredictable or without personal power to fix every problem that comes our way simply by exhibiting the proper attitude or control. Let people spout their wisdom regarding "live for today" because we DO live for today - and today might include letting in our feelings of anxiety, hopelessness, fear, regret, and anger. After all, aren't these human emotions that every single person alive has felt at one time or another but are afraid to admit? Tomorrow may bring acceptance, bliss, peace, and serenity. But today is today and tomorrow is tomorrow.

We are human also and we have a right to feel any of these emotions. Each time we allow ourselves to feel them, instead of pushing them away, we also allow ourselves to be a little more connected with our new priorities and what is really important in life. Job titles, power struggles, gossip, superiority complexes, and materialistic attitudes don't register on our scale as being worthy of attention.

So yes, we have many things to be thankful for. We are thankful we no longer think there are simple answers to life's problems; we are thankful we finally see the world as it really exists and are not afraid to lift the veil of delusion; we are thankful to have felt the chasms of sadness and grief because it sharpens our ability to feel the abyss of love and compassion.

We ARE normal. It's the other people who are still living under societies delusions.

IMAO

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

thank you!

Leslie

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

Very well spoken and great angles to ponder....Just a great Post, again thank you....Love and Hope, Clift

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

thank you all for sharing so openly about how this disease has affected you.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm not at the "after cancer" part (yet) but from the get-go it's been a series of new normals that one has to get used to and accept (or not). Face it Brooks, most of our bodies have been through hell as far as multiple operations or ostomies go. I would imagine that if someone was a stage I that they could physically bounce back to being normal easier since the amount of treatment was most likely less than someone who is a stage IV.
Also, chemo is "chemical therapy" or controlled poisoning. It's bound to take it's toll on you/me/others...

coloCan
Posts: 1956
Joined: Oct 2009

continue to require, undertaken because we wanted to go on living? Life can never be the same as it had been before because something has been taken from each of us and for some, much more than from others and I'm not referring solely of the physical; the emotional,mental and "spiritual" aspects of ourselves have also been affected. Don't "Live Like You're Dying"; live like your living!!! Don't put additional stress or pressure into your life, do what you need to do to stay alive and then try to do what you enjoy.....Easier said than done at times.....I can't even fall asleep this date.....

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Am I still so new at this? It's been 7 months, and yet I still want to wake up and find this some sort of weird nightmare. It is truly, a nightmare that has invaded my days, my life. Surely this can't be real. Every trip to the onc, to ct scan, to oncology for chemo treatments must be a nightmare that somehow I endure. I just wish I could wake up and be normal again.

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

You can't go back. All you can do is go forward. And, after all the battles and hard work to STAY alive, why would you not LIVE alive!!!!! The sooner you accept, and stop mourning what you have 'lost', the sooner you will find that life STILL has much to OFFER!!!!

And if you think I don't understand...well...a short summary of my experience: 2x cancers, both in the lymph system. I lost my rectum and sigmoid colon, had a new storage pouch fashioned from my descending colon. I must always caution people who mess with my abdomen, because my colon now goes diagonal across...NO massages for me. I have diet issues, and don't eat much if there is not a 'good' toilet nearby. I have continuing pain and weakness in my left hip, where the rads went thru to shrink the tumor. With the breast cancer that followed, I was spared with a lumpectomy, but the nodes were positive, so my left arm cannot be used for anything heavy, for fear of lymphodema, a swelling condition that, once started, will continue for my life. I became lactose intollerant from the chemo. I have permanent heart damage also from the chemo. I have permanent lung damage from the rads to my breast. Because I have had 2 primary cancers, I cannot change my insurance ('uninsurable'), ever...so my premiums are over $700.00 per month...and rise every 6 months or so.

All that said, I REFUSE to stop living!!!! I wake in the morning, happy to wake in the morning. Yes, I DO have my dark days, but even non-cancer patients have dark days. I'm living larger now because, eventually, one or both of my cancers will return...and the breast cancer, from what I am seeing, returns with a vengence and I will not survive. I want to be laying in my hospital bed, having good memories of what I have done...not regretting what I haven't done...

Sorry to vent, but, again, my fav prayer says it all, and bears repeating: God, give me the strength to change the things I can change, the patience to accept the things I can't change, and the wisdom to know the difference between...

BIG hugs, Kathi

tiny one
Posts: 467
Joined: Jan 2009

I am a 3 year cancer survivor. Was diagnosed in Feb 2007, last chemo treatment Halloween, 2007. Due to the radiation I received and my ileostomy reversal, I deal with bathroom frequency each day. I wasted many months thinking about the what if's. What if the cancer comes back, what if I always have this pain, body image, then the worries about the CAT scans, colonoscopies, sigmoidoscopies. I had alot of counseling, went to group sessions, still had dark days. I went on Prozac, and began to think differently. Basically I now focus on who can I help today, what do I want to achieve today. I tell myself each day how good I feel, I do not let my body take charge and allow it to focus on how bad it feels. This takes discipline, but the more we give of ourselves and focus on others the easier it becomes. I chose not to focus on cancer anymore but living my life each day doing the things I love to do.

k1
Posts: 220
Joined: Dec 2009

Yes, all of it you describe one year past my own dx and surgery. Plus had two sick parents in the middle of all of it and one of them died in spring only in her 60s despite our best efforts and my taking leave from job. So grief over loss of loved one on top of all the other stuff you describe -- no energy, chronic pain and fatigue, now no job, no money, medical bills I can't pay, dental work to repair teeth out of question at present. I'm having all my one year post-op CT scan, which I also cannot afford, next week, and do not know how I will cope if there's any bad news.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I am alive, turning 60 on December 29th and loving every minute of it!

AnneCan
Posts: 3692
Joined: Oct 2009

Gorgeous picture, Diane. I am glad you are doing so well.

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

You are a Beauty, always...but this pic is FAB!!!

Hugs, Kathi

tammy31269
Posts: 22
Joined: Jul 2010

for me at age 30 dealing with my colonrectal cancer in 2001, at the end when everything was over and had no more appointments, i was left alone and for some reason i missed going to the cancer center.then i found myself thinking of what do i do now.that was my life now i have to find a new lifestyle to begin again.then as time goes by you find out odd things going on with your body, i have chemo brain forgetting things,gaining weight,hurting everywhere,having neuropathy pain in my feet/hands. oh yes we all will have post tramatic stress disorder, look what we went through to try to live.and then all in a flash its over.its alot to deal with and its kind of hard for a normal person to understand just how we feel or our out look on life now.but through it all no one at all told me anything about how to deal with after the storm is gone and what to do.theres no where i can find someone writing about the end part when its over what will it be like.for me im dealing with this bone loss in my body from the radiation.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

About the pic, it's great!

Thought chemo would make us look old and wrinkled! But don't think it affected the face as much as the bod!

ray1
Posts: 2
Joined: Oct 2010

can't figure out how to post if this makes sense to you maybe you could post this for me:
i have not been through the same treatment however i have lived with similar issue's of many on this board, the cause being gluten intolerant, i'm only recently aware of body's issue with breaking down the protien in gluten, but have since changed my diet to exclude this type of protien in it's entirety... at 31 yrs old i wish it would have been sooner as i have lived with arthritis, anemia, sometimes very serious bowel issues causing fainting in some cases, and what finally linked me to the illness; various water blisters relating to dermatitis herpeformis...
I don't live as a celiac as i find it ok to consume dairy, vinegar and have been fine with these foods unless some gluten slips in than i am bothered by iodine in salt and some other things so i try to eliminate these things for a couple days.
On this diet i can meet all of the daily requirements for nutrtion and it took me about 4-5 days to really start feeling better. just thinking that maybe the radiation reduces the stomachs ability to break down the complex 23 strand amino acid just as it is with me.
thanks for reading, as i said i have not undergone treatment for cancer but i can't see that this diet could hurt anyone if combined with already existing doctor prescribed nutritional advice

ray1
Posts: 2
Joined: Oct 2010

http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

this website has been really helpful

elizabethgd
Posts: 146
Joined: May 2009

I dont often post... but do read.. thanks to all of you for sharing yourselves.. it helps so much to hear others discuss the feelings, emotions, fears, guilts.. thank you so much for talking about these issues..

jararno's picture
jararno
Posts: 189
Joined: May 2010

I had my 12th Folfox treatment two weeks ago. I saw my Oncologist this week and was suprised when he said to come back in 3 months for tests??? I was expecting the tests to start right away? I have not had any tests done to check on the cancer since a CAT Scan last December.

I had a sigmoid colectomy last February and was diagnosed as Stage 3C... Chemo started in late April 2010.....finished in October 2010.

I feel like I am in Limbo! I do not feel happy or excited and of course I still have the fatigue, neuropathy, etc...I do not think that I have had the memory and concentration issues( but I could be wrong!! )

I do not know what my CEA level is as I was never told by the doctors.

I am getting all the reminder cards for follow ups from my surgeon, gastro doc, family doc, etc and I feel that most of these visits are unnecessary as they don't do anything but ask "How are you doing?" and charge $300! I do realize another colonoscopy is in order, but I am not really in the mood for all that right now!

Yesterday I found out that my brother was rushed to a hospital with abdominal pain. A CAT Scan shows a large mass on the prostate that is pushing on his bladder.( He just had his first colonoscopy a few weeks ago and we were all relieved to have that come out as normal...)
His exwife is the only family with him and she is highly unreliable as to information, so we are very unsure of what is happening with him!

It is always something! I was hoping to get through the rest of this year with a little piece of mind, but I do feel like I am waiting for the other shoe to drop!

How long after Chemo did you start your tests??? Have you been able to feel like you can stop looking over your shoulder??

Except for the Chemo side effects I do not think about the cancer that much as I really don't care...I pretty much have been very calm about the whole thing which is odd for me as I am usually the one who goes nuts over little things!

Hope everyone has a great day and feels well!

Take Care, Barb

dss2005
Posts: 1
Joined: Jan 2012

I, too, have so many health issues since my stage III colorectal diagnosis/radiation/surgery/chemo. I was diagnosed in Oct 2005 and completed treatment Dec, 2006.

I have made the 5 year mark! PLEASE don't think I am not grateful for every minute I have on this earth.

But the reality is, I have some serious problems now. I still have to work and support myself (I was 48 when diagnosed). These problems truly impact me on a daily basis.

Neuropathy - particularly in my feet, "chemo brain", fatigue and TERRIBLE abdominal pain and intestinal problems. My intestines swell so much I can literally SEE their outline and movement. My abdomen is very sensitive to pressure. I am often nausous, sometimes throwing up repeatedly. Still taking Zofran all these years after chemo!

I kept mentioning this to the docs but since I was "cured" I feel they were not treating my symptoms seriously.

As luck sometimes occurs, I was at a surgon having a benign cyst removed from my back. He was aware of my history, having implanted my chemo port, and asked how I was doing. When I mentioned my intestinal symptoms he said "You have chronic radiation enteritis".

Just like that! An actual diagnosis!

This was just a couple of months ago. I immediately googled the term and found all kinds of helpful information. I knew certain foods made me sicker, but now I have a list of what to stay away from and what to eat. Essentially, I no longer eat as healthy. :) I knew the severe pain I experience was not "in my head". It is, in fact, a very common side effect.

I still have these health issues to deal with, but knowing it's not just me, that there is a logical cause and effect, somehow helped me make peace.

May you stay healthy and happy!

ketziah35
Posts: 1154
Joined: Jun 2010

My mom has all of those. I have often wondered of I should leave the board. My momis NED and took her last chemo treatment on 12-23-2010, but cancer is the gift that keeps on giving. She is following the advice of physical therapists for her body issues, nutrionists for food, had (housands of dollors in dental work done and doing brain activities (crossword puzzles etc) to work on chemo brain. She seems to be doing better. The biggest thing is that she got her diet right, went to the gym, and got involved in some volunteering on the oFfice adminstration side to work her brain. The only thing we try to do is keep heractive in life.

Hope this helps!

Ktz

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

So grateful to have this information/support/insight.

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Wow, what a great thread. I just got the results of my ct scan. I am NED. No more chemo, yay.
my next scan is in April. Now, i have been NED for 5 yrs, and it came back, then it came back again. so today i celebrated, but with reservations. I have many of the side effects everyone has mentioned. But have been very lucky in many ways. I feel guilty complaining about anything. I am alive, I am 66 years old and so many young people are having such a terrible time. So many emotions, so many demons to battle that no one tells you about. it's exhausting. it's frustrating and really pis---es me off.end of vent.
Now, after reading your posts, this is what i would like to say to you all.
I am so proud to be part of this group. How amazing you all are, the heroes are not in the comic books, they are right here. holding each other up, while fighting their own battles. Do not ever apologize for feeling tired, disgusted, vulnerable, scared, and what ever else the beast brings. Everything shared here is helping someone, who is looking for help. This thread proves it. be as kind to yourselves as you are to everyone else. i am going to try and take my own advice.cause if i am a part of this group ihave a lot to live up too.
Judy

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I'm just now trying to figure this one out. Finished chemo in October,had CT in November,had colonoscopy two days ago and everything looks good. I can't say I'm happy but I do feel relieved. I mostly feel guilty. I feel guilty that I've been able to make it this far and that my prognosis looks good. I just feel so bad. I wish I could take everyone's pain away.I too suffer from many of the side effects from chemo and surgery but I can never go on about it because I know that my experience has been a walk in the park compared to most. I'm just not sure on what it was all about or what to do next. I do think I suffer from some sort of survivors guilt. I'm glad to know that I am not alone on this one.
Karen

....I do know this is an old thread and some that have posted are no longer with us. I mean no disrespect. I pray for them and their families. The topic was so close to home, I just had to post.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

That's how I feel too Karen---the thread may be 2 yrs old, but so much of these posts are incredibly relevant.

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

I am glad people have posted on this tread and bumped it up, it is very universal in it thoughts, posts, and fears.

{{group hug}}

jenben59
Posts: 144
Joined: Jan 2009

When I was on chemo, this is the only site I felt comfortable with and would post and ask questions. When I became NED,I tried to "cut the strings" and move on, but it did not work out. Between the side effect from the colon cancer and the brain tumor, everyday life is hard. I live in a small rural area and the closest support groups are far away. Personal friends/family most do not understand...they think since I am off chemo, everything is just fine now and will be like it was, well it is not. A lot of "friendships" have fallen by the wayside. I am not trying to be negative, but I changed and my life has changed a lot. I wish I had a local group of people to be around and talk with that understand. Just to have people that understand and do not get rude/hurtful and say, "get over it" would be a blessing. When I hear other people talk about their situation/side effects/worries I do not think about mine and I surely do not feel alone.

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