CSN Login
Members Online: 7

You are here

does anyone else feel this way

tiny one
Posts: 467
Joined: Jan 2009

I've posted before. I've called and spoke with my radiologist nurse and told her how outraged I am by the side effects that I now have. I'm 1 1/2 years from my last radiation treatment. All she could do was assure me that before I started treatment I was told what side effects I might have. They didn't stress this enough. I had one lymph node that tested positive and the surgeon removed the cancerous polyp. It was on his advice that I did the radiation. I can't believe that this is all the medical community has to offer us. Chemo, radiation, side effects for a life time. More screenings, tests. Living with the possiblity it could come back. I'll sum it all up. Anyone faced with possible radiation treatment know what you might have to live with the rest of your life.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I didn't have radiation, but have the abdominal scar from just below the sternum to just above the pelvic bone, two scars on my chest from port insertion, port removal and port insertion. I retain fluids like nobody's business and have extreme cartilage deterioration in my hands and knees, I am sure aggravated from the 3 rounds of chemo I have been through over the years. I have many pictures of myself in various stages over the almost 5 years and people find it hard to recognize me in some of them! I have been lucky enough not to have any neuropathy, as I was taken off oxaliplatin after 3 doses due to toxicity issues. But if you read other threads you can see just how many people are dealing with debilitating neuropathy that has not improved even years after ending chemo. In fact a recent post about a man who has neuropathy so bad he has only recently become able even to write is what prompted me to post here! And I won't even get into the ones who are left to adjust to new plumbing. It just really irritates me that we have been fighting this beast for SO long and the options we have in the battle are so arcane and can cause so many debilitating side effects. We appear to have won the initial battle against the cancer, but are left with terrible battle scars; weighing quality of life with quantity of life is a big issue. I long for the day when the blue star ribbon is just as recognizable as the pink ribbon! When everybody is jumping on the bandwagon of funding for research to find HUMANE treatments that are successful against colon cancer.
mary

tiny one
Posts: 467
Joined: Jan 2009

Your reply let's me know that I'm not the only one who is outraged. I think people automatically do what these Dr say for fear of dying. I know that's what I did. How many survivors have taken their lives because of depression and the pain being to much to endure? Quality of life should be thought about before any surgery or treatment is begun. I attend a cancer support group and feel for the ones that their cancer has come back. They fight till the end and are in alot of pain. It's not fair. Wished I could heal everyone and give back what was taken.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I hear you Tiny One... and have heard from a lot of others on this board so I know what you say is so true... so many of you are suffering after the fact. After reading your post, I was going to jump in and say, "Well, I do feel for everyone who suffers ongoing but some of us are lucky and not doing badly at all".

Then I read Mary's post... and I recognized myself in her post with stuff I didn't even realize I should be complaining about . I have retained fluids in my feet really badly, but I put that down to the goofy neuropathy in the feet, which causes me to not be able to walk like I used to, hence the feet aren't getting the same workout (then I found out, by wearing a good pair of shoes rather than flip-flops 24/7, my feet don't retain water!). Mary, you also mention extreme cartilage deterioration in your hands and knees... for me, it's the knees... both knees! Again, I put this down to the arthritis I've had long before I knew about the cancer... but agree, the chemo aggravated the arthritis and it is much worse than it should be at this point.

Soooo, my main complaint is my knees and my feet, but the rest of me seems to be just fine and has recovered very well. I had 8 months of chemo (every two weeks... then daily while I was on radiation), 6 weeks of daily radiation, the colon resection where they took 18 inches of colon out, the adrenal surgery where they took my right adrenal gland out (very, very painful surgery...made the colon section feel like a walk in the park) and next week I'm about to get two tumours burnt off my lungs. As far as bathroom issues go (I am not one who can talk about poo's and pee's comfortably), everything is just fine and better than it was for years and years prior to surgery. I used to think my bathroom habits WERE normal, but now that I have normal ones I realize I was in big trouble for years before I was DX'd. I don't think I've had it any easier than anyone else,as far as treatment goes, but it seems I've recovered a lot easier. If I have to go back on chemo after the lung ablation, I wouldn't hesitate.. I would go back on it in a heartbeat... especially since my oncologist said that if I do have to go back on it, I wouldn't be going back on the Oxaliplatin (that's the one I really didn't like). But then, my experience while being on the chemo sounds like it was very different from a lot of you who had bad reactions and were hit very hard with it.

Now, I must admit, I have the luxury of having Long Term Disability insurance so I don't have the stress of having to go to work, and I don't have a spouse or any children (unless you count my dog and bird as my dependents ), so I don't have the stress of having to look after anyone but myself. I really do classify that as a luxury when it comes to healing because I can devote 100% of my time and energy into looking after ME, no matter how much I would love to have a family and how much I know they mean the world to those who have one. It still means energy that you have to share with them and responsibilities that you would have that there's no way you could (or would want to) give up.

Is that what makes the difference? I really don't have an answer for that... but I do know that not everyone is suffering to the same extent. It also could be what may be giving me my belief that I am going to beat this monster into submission... because I haven't felt the horrible side affects and long term suffering that others have felt. On the other hand, we all know everyone is unique and different, so maybe it is normal that some of us don't suffer whereas others do.

As far as where is the cure?? Where is the ability to treat the side affects so people don't have to suffer?? I will be the first to jump on that bandwagon and voice my concern and anger that the beast still has one up on us there!!

Uh... as for having the blue ribbons as popular as the pink ones with our motto being "Save Our******"... I would be against that motto ;) I think that's very misleading and so many of my friends were under that deception that "colon cancer" is cancer of the ***/rectum/anal, etc. Rectal cancer, yes. Anal cancer, yes. Colon cancer... that is higher up and a part of the intestinal tract. All of these cancers are grouped into the category of Colorectal cancer... but not all of them have to do with problems with the bum. I have a scar from the pubic bone to just past the belly button. Lower down, I have a scar just above the pubic bone from one hip to the other (hysterectomy). No one calls the hysterectomy a problem with my ***, whereas people think my colon surgery was some surgery that cut into my *** and they want to know if I have trouble sitting. That's when I realize we need more public awareness of Colon Cancer and all the Colorectal cancers that are out there. I guess people think "Colonoscopy" is needed to detect Colon Cancer, hence it's all about the ***.

But, suffice it to say, other than it's way too large, my *** is doing just fine and has never been a part of this journey. My colon, on the other hand, was involved big time and so far (knock on wood), it is doing just fine and is healthier than ever. Right now, in my journey, when we are talking colon cancer, which I still have, it's my lungs we are talking about... still nothing to do with my ***, which it never has been ;)

Hahaha... just thought I would clarify that... not that I have to, since I'm preaching to the choir here. We all know the difference in this group!!

Hugggggs,

Cheryl

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

When I was going through the chemo and radiation; someone said to me, "gee, have you lost weight?" I said, "yep, one body part at a time." I haven't had a normal bowel day since my resection. I'm either constipated or have the runs so bad I almost have accidents. I'm on my 3rd dance with the beast. On one hand I am grateful to be alive, on the other hand all these pink ribbons are driving me nuts! We've all heard the slogan, "Save the tatas" and I've even seen a banner that said "Save the********." How about "Save our******!" hehehehe

tiny one
Posts: 467
Joined: Jan 2009

I hear that to I've lost weight. Thank god for lomotil, it enables me to be able to do things. I just want the body back that I had before. Not this broken one

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

about 'anyone faced with possible radiation treatment.....'

I'd change it to 'anyone faced with any life-threatening illness'.

I talk to alot of people. Mainly those who have or have had cancer, but a few who are facing life changes for things like ulcerative colitis, parkinson's, and heart disease. It's all about acceptance. Yes, fighting the good fight is elemental. And keeping hope alive. But, in the final analysis, regardless of the treatment, there are life changes. We can no longer take things for granted, even walking a short distance up stairs renders my beau breathless from a bad heart. And, for me, simple things like eating are not without consequenses, depending on what, where, and when I eat.

But without acceptance, well, we can no longer live a life with joy. And without joy, the other ugly monsters rear their heads. Depression. Sadness. A feeling of profound loss. A feeling of worthlessness. Those frighten me worse than all of my long-term side effects from both of my cancer treatments put together.

So, I find something to smile about every day. Some are very small, some are big...and sometimes it's a bit harder than others. A few days ago I found that my daughter's wrongful death suit settled. She died 2 years ago, Jan 7. There is a hole left now, now that there is nothing left to fight for with her. But, I see the birds in the trees and the snow on the mountains. I remember the way she laughed at the sea lions on the coast.

The medical community is searching for alternatives. Just 4 years ago, there was no reliable treatment for stage 4 people past surgery. 5 years ago, the treatments that saved my life didn't exist. A year ago, gene testing to check the effectiveness of a certain chemotherapy wasn't part of the plan.

I hope that some day there will be no suffering from any life-threatening disease. In the mean time, I support the people trying to find solutions. The number of cancer survivors have exploded over the last 10 years...before that, well...in my grandfather's time, it was called a 'wasting disease' and you died. Period.

Just my 2 cents' worth. Stage III rectal, Stage II breast cancer survivor of 4 years. Without radiation, I would have died. No buts about it.

Hugs, Kathi

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

and I love your new picture!
mary

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

It was truly amazing...and out the back, the clouds were fluffy and bright pink...

Hugs, Kathi

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi tiny one,

Well, you have touched on the one of the VERY reasons why I did NOT do any chemo for my Stage III sigmoid colon cancer--the long term affects of cytotoxic chemicals. Before my feet hit the floor post surgery, I was researching my options (and YES WE DO HAVE THEM!) to heal this cancer. My first book I read was Questioning Chemotherapy by Ralph Moss PhD. He tells it like it is with no candy coating and economic agenda. He is a cancer researcher.

An important aspect to healing disease is taking control and empowering oneself. Research like crazy. I did not allow the fear mongers to control my decision. I read, picked many brains, visited the chemo clinic for a second opinion (don't even get me started on that scam), and searched my soul and my God for direction.

Because I did not do any chemo I will never fear:

1) secondary cancers
2) PERMANENT heart damage
3) PERMANENT kidney damage
4) peripheral neuropathy
5) chemo-induced leukemia

need I list more?

Because radiation was never prescribed I didn't research on that. I am sorry you didn't find enough information in time to help make your decision.

There ARE options--many of them-- if you are willing to look outside of Western medicine. They, western med doctors, do many wonderful things but they also are lacking in some pretty serious ways.

My cancer healing protocol did not include any modality that would inflict more harm in the long run. Anyone can choose this way.

I did CHEMA--juice of the plant--instead of chemo. Anyone can do this. Insurance doesn't pay for it, but to me, it was worth every penny I spent. I am 7 years 5 months cancer free with no recurrences or mets.

EMPOWER yourself and become your own advocate!

peace, emily

irene77's picture
irene77
Posts: 28
Joined: Dec 2008

hello tinyone
also have colon cancer, however did not have to have radiation, only chemo which will start next week. Worried over the after effect what will it leave me with once the treatments is over. I only had one limpnod with cancer out of 27 that was taken out. I have had two opinions from oncologists both feel I should get chemo to be on the safe side that it will not come back. I do not want to take a chance.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hi all,
I haven't had colon cancer or rectal but, I had mucosal melanoma in the anal/rectal junction. Had 4 surgeries, the last being a total APR with colostomy and feel comfortable on your board. I hope you don't mind, I'm just experiencing a lot of the same issues as you and I don't fit comfortably in the "skin cancer" mold. I do try to help there, but my after-effects are more like yours and I relate better with your concerns, so I often look to all of you for advice and comfort. I'm like the proverbial step-child that doesn't fit in; I have melanoma, but a very unusual (and deadly)form, so my treatments and side-effects are unique. I don't qualify for many melanoma trials and my onc had a hard time getting me into one. The side effedts are brutal, neuropathy being one of the worst; I am grateful for the extra couple of months that I have with my husband and kids but I am now considering dropping out as I have multiple mets and my bones are now crumbling. My doc is one of the best, but I am feeling like a guinea pig anyway.My time is short, my body is falling apart and I want to spend what's left with the people I love while I can still get out of bed.
And the ribbons? Melanoma is black, real hopeful, huh? Sorry if it sounds like I'm b****ing, but I just wanted to put my 2 cents in and felt the frustration of these issues, also. My prayer is that you all get better treatment for your after-effects and that the docs can be more forthcoming with the truth about what life will be like after surgery, chemo and radiation.
Much love,
Hollyberry

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I, for one, do not consider you a misfit or stepchild. We are all in the cancer thing together. My heart aches for what you are going through. Know that my prayers are with you and your family, and I wish I could be there to hug you hard.

I do have to add that my doctors DID prepare me, every step of the way. They have been honest, forthright and extremely helpful. I chose the chemo and radiation, because I felt that gave me the best chance at living. It was MY choice, not theirs. They laid it all out and gave me time to absorb and decide. My family also played a part - they gave their thoughts, but in the end I made the choices and continue to do so.

Each case is different, and each choice is personal.

Keep fighting...in whatever form that makes sense to you.

Vicki

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Vicki,
Thanks so much for your kind words and prayers, I truly appreciate it. My situation is not always as bad as it seems; I have a wonderful, supportive family, a medical team that tries very hard to help me and all of you to keep me sane and smiling! Not a bad way to cope,eh?
I do get information from my doc, just in smaller doses, over time. I think it's just his style. He's a good guy with a lot of optimism, given the form of cancer he's chosen to work with.I'm guessing everyone gets frustrated from time to time with their treatments and side-effects; after all, we started out basically healthy and had to deal with a monster ramming it's way into our lives. Not easy for anyone, and like others have mentioned, there are so many dealing with other diseases and situations.
I do hope, however, that the cancer community can find better ways of treating our side-effects; it is tough in the day-to-day to cope with the changes in our lives from these issues. Quality versus longevity is a difficult thing to weigh for anyone and I pray for all who have to make these decisions.I for one, am grateful for the time I have left and when I am finished with the race,will be content that my decisions were the best I could make at the time.
Thanks, again, for your very kind words; it brings me much comfort to know that you care and have taken the time to pray for me.
Much love,
Holly

kmygil
Posts: 881
Joined: Feb 2007

Insanity! Holly, get one of those black ribbons and glue a HOT NEON GREEN/PINK/BLUE star, flower, or anything else lovely onto it. We are all praying for you and sending our love.

Hugs and prayers,
Kirsten

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

What idiot chose THAT one? You're right, way to be supportive! And you are definitely in the right place, Hollyberry, and we appreciate all of your input! Cancer just sucks! Sounds like you have been having a really hard time with it! I think the BEST thing about cancer survivorship and support groups is finding out how much we have in common, but also how much we are different and how no matter WHAT crap we are going through, there is somebody out there having it better and somebody out there having it worse. Kind of puts perspective on our lives. Any idiots try to "comfort" you by insinuating that your melanoma is just from sun exposure and totally preventable?
mary

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Thanks Mary, I needed a good belly-laugh; not enough of those lately!! Yeah, I got the " It's only skin cancer" thing, but people really don't get the severity of the situation, so I just let it go.
And the black thing, what were they thinking!?! totally depressed me when I found out. Do I get a shroud with that ribbon? Give me a break!! But I do have friends here and that makes all the difference to me. Your attitudes are great, you lift me up and what could be better than sharing our stories and compassion with each other? well, there is a cure that we hope for, but int the meantime, I'll take a great family and friends that make me laugh anyday!
Thank you sweetheart, you made my day!!
Holly

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Any of you reading this thread and trying to decide whether to have radiation treatment should know that it doesn't always have terrible side effects. I've had a few minor issues in the three years since I had 6 weeks of radiation for rectal cancer -- swollen feet and ankles, excess rectal gas -- but compared to being alive and healthy with no sign of recurrence, it's nothing. Really nothing.

Subscribe to Comments for "does anyone else feel this way"