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5 Years ago today

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

It was five years ago today that I've received the devestating news.  Thanksgiving is a bitter/sweet memory for me as I'm thinking that the day before was a mixed emotion because they told me I'd have to wait until the following Monday for results and then having to go through Thanksgiving dinner (which was at my house) and then telling everyone that I'd be fine.  Actually five years later it is fine but that doesn't mean that I'm still not scared about the colonoscopies in the future or every pain that surfaces.  It's hard and I'll never forget that ride back from the doctor's 5 years ago today.  It seems so long ago, but so much has happened and I'm a different person.  A person I'd never dreamt I'd be.  A person I'd never really wanted to be.  Mags had a post about her husband saying that she seemed so angry since diagnosis, but I'm seeing the same thing in me.  Not really trying to be angry, but I'm just angry about how I'm still going to the bathroom 20 times a day, can't go to family functions because I'm not sure if I'll have to have a spasmic rectum because of food that was eaten 10 minutes ago and then spend 1 hour trying to expel a little squirt at a time thinking that I've accomplished something, but looking in the toilet and finding just that, a squirt.  For all that urgency, I'd want some better production, but it doesn't happen.  If I'm not able to go to the bathroom without having to take something to help me go for the day, I'm so backed up and my stomach is so hurting, then I'm not able to sleep and I'm just miserable.  I'm thinking that rectal cancer has a different effect on people than colon cancer but I'm not sure.  Just know that my rectum was remade and I'm still miserable.  5 Years is a good goal and I'm glad that I've made it.  I'm praying for all of you everyday.  Tomorrow it's Thanksgiving and whatever it brings, I'm glad that I've got you all to say Happy Thanksgiving to. 

Hugs!  Kim

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

read your thoughtful comments.  I wish you courage as you go forward.  I wish no one had to deal with any of this ... ever.

Peace ~ Cynthia

Gavin63
Posts: 98
Joined: Aug 2013



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Hello Kim,

I love your inspirational comments. I feel good to read the positive comments from the members of board who are fighting this dreadful decease. I feel sorry for me and all members of the board fighting this monster out. I have just began my journey & set a goal to witness my Triplet’s High School graduation. Long way to go though. But I will fight my way out to make it Smile with the support this wonderful forum.    

Keep posting & encourage the members. Happy Thanks giving to you & your family so as to all my friends on the board.

Off to my 1st Chemo (Oxy + 2 weeks of Xeloda) today.

Gavin

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

Hey Kim:

Reading your post I can see how you've changed health wise. And I am sure it is very bad, and annoying and you truly wish you were your old self. But, look at the side side of the coin. You've changed as a person too. You value things probably way more now than when you were your old self. You pay more attention to people, of how they think, how they feel. You appreciate smaller things than 5 years ago. I always believe that everything has a reason. And yes, it would be the most optimal to be cured and then bounce back to be healthy but we would then be very different than this way. I am not trying to say that you should be happy you have this health problem...I'm just trying to show you that there are "good sides" of your journey that lead you to where you are right now and in what condition you are now in. You know my story, and well, honestly, I often think how different I would be. Probably would take things for granted, and would be complaining how embarassing my parents are, and how they get on my nerves, and I wish they left for a good two week vacation so they would stop bossing me around. And probably I would be demanding, and saying I want this and that, and if they didn't get it for me I would be upset at them. And although I don't have any health related problem that remained from 4 years ago but now I have definitely changed. I would give the world for a "family dinner". So, all in all, I just want to tell you that maybe this is how it supposed to be for you, so that you'll always, and always remember what you have gone through, so that you'll always pay attention to yourself. Maybe if you didn't have any health issues related, you would pay less attention to yourself saying you're happy and healthy. This way, you're always going to be at an alarm...and although it sounds annoying, and miserable...who knows, it may be a good thing! I wish you a very Happy Thanksgiving! Eat a lot of bird! :) Please take care!

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Anniversries of horrific events such as first notification by our doctor, loss of loved ones, and other sad moments can often be hard.  

I feel that we have to deal with these moments to appreciate where we are now and how far we have come.  Well made point that even though there is still pain, there is also growth as well.

Glad you are hanging in with us Kim.  We are better off for it.

Peace,

Art

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

My Rick passed away on Thanksgiving morning last year, so this has been a very difficult day for me.  I don't feel growth from this situation, just the opposite.  I am extremely depressed, although I try to hide it from my family/friends/co-workers, but sometimes it doesn't work and my emotional pain shows through the facade.  I don't care about the little problems in life anymore, because I don't care about much of anything anymore.  I couldn't care less about my own health and have considered ending it all many many times during extreme bouts of grief and depression.  The only thing that has gotten me through the past few months have been my dear friends on this board, and my new kitten, Sophie (she makes me smile when I'm feeling down).  So no, I find nothing good about this @##$%# disease whatsoever.  It has taken from me the only man that I have ever truly loved, so I will never be whole, nor happy, ever again.

But hang on Kim, you've made it this far, so you have a good chance of keeping the beast at bay for a very long time.  And yes, I know that you're not feeling so well, but take comfort in that your presence at the Thansgiving Day table continues to bring joy to your family.  May you have many more holidays to celebrate with them.

I wish you well,

Luv,

Cyn

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I wish I could crawl through this computer and give you the biggest, longest hug.

My heart weeps for your pain, and I pray that you can find comfort as time moves on. 

I am so glad that you have little kitty with you. Squeeze her and feel her warmth, that is the warmth we have in our hearts for you.

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

You have such a burden on your plate on Thanksgiving also.  I'm so sorry for the way that you are feeling.  It seems like being around a day of importance brings such emotions and a death has to be the worse.  Please don't neglect your health because you are a valuable part of this board and it's worth it for the family and friends that love you to keep you healthy.  You enjoy your little kitten and please know that you are a valued member of this board.  I'm always praying for members of this board, so you are always thought of and prayed for. 

Hugs!  Kim

UncleBuddy
Posts: 1019
Joined: Aug 2013

Your symptoms sound very similar to my brother's. He now has rectal cancer mets but had rectal cancer surgery two years ago and his bowels have never been the same since. Sometimes he can't hold it in time to make it to the bathroom and other times he struggles to make a little squirt. I feel for you! I know you're grateful that you're here, but it would be so much better if your rectum cooperated. Lots of hugs to you! Happy Thanksgiving!

Lin

PS I pray for everyone on this board, the sick, the deaprted and the caregivers. Cancer sucks!

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I am sorry that you feel angry, Kim. I certainly can't tell it when I read your wonderful posts.

I do believe you were one of the first to respond to my initial joining thread and I'm sure you were the one who stuck up for me when someone from another cancer board told me that I shouldn't open a new post about a problem that had been posted before. Yes, I always enjoy seeing your avatar (so beautifu) and reading what you have to say.  

I have noticed this past week that I have been ignoring my 10 year journal which I write in every day, and realized it is because I don't want to be reminded of how I was feeling this time last year when I was diagnosed and had my surgery. I had my surgery the day after Thanksgiving, which meant I spent Thanksgiving drinking the clean-out fluid and sitting on the loo. 

It seems that many of us here were diagnosed around November, December. Happy Holidays indeed.

I keep hoping that my side-effects go away at some point, but know that if they don't, I'm not alone. I too have to go to the loo frequently, and realize that my little house (and I mean little) is just about right for me to get to the loo in time as the bowel does not give me any notice and its a matter of running like a penguin and hoping I get there in time. 

I am happy for your five years, though wish it were missing those darned side-effects. Here's to another five and more. 

Hugs and blessings!

jen2012
Posts: 1607
Joined: Aug 2012

Happy Thanksgiving Kim. Im sorry you have so many issues due to this damn disease, but as others say we dont see the anger. You always come across as gracious, warm and encouraging. Enjoy the day with yoir family.

janderson1964
Posts: 2215
Joined: Oct 2011

I am so glad you are stil here and a big part of this community. A lot of your comments about how you have changed are similar to me. It has been over 8 years for me but I find myself changing the most in just the past month. I feel more withdrawn and isolated from friends and family. Lately I feel like I am fighting manic depression. It just comes and goes so fast. I have colon cancer but have a lot of the issues you have but just not as often as you described. I think the last 12 rounds of FOLFIRI permanently damaged my stomach. I get severe stomach pain about once a month to the point that I contemplate going to the ER. I had one of those days on Tuesday. I was afraid I would be sick for thanksgiving and we have 10 people over today. Fortunately it cleared up and I am fine now.

The hardest part is that I suck it up and keep it to myself when I am suffering so I don't put my wife into a panic. If she only knew how many issues I really have mentally and physically.

With all that said I am so greatful for you and everyone (family) on this forum.

Happy Thanksgiving.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Reading how several of you long term survivors feel, makes me wonder if part (maybe a small part) of the aggitation may be caused by the fact that when you have survived so long, people immedietely think that there is no longer anything wrong with you. 

Let me explain. Now that I have had one clear scan, I find that everyone I knows who hasn't had any experience with cancer, just assume that I'm well now and there are no problems. They don't know all the things I go through each day, well, the personal things related to bowel, butt, bowel movements, itching, sores, the fact that I can't have sex, all those words we don't use in public. 

I personally find that a bit irritating and my pat answer when they say something like 'I'm glad you are cured' is that 'I still have issues'. 

I was just wondering if that may play a part in the angry feelings or the feelings of being withdrawn.

Gosh, I hope I'm helping and not hindering here. 

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

hi trubrit....no I think you are onto something....I am 5 years out from death diagnosis and I think you have something there for sure. I was at a party not long ago and someone said to me...." maybe you didn't ever have cancer at all!!!!" oh good grief.....no the world moves on and it leaves us behind and we should not whine cuz we are still breathing.....

Kim I am so so sorry you still have so many bathroom issues and Jeff you too.....I went to see my surgeon just yesterday for post colonoscopy and I said....so tell me about digestive issues after 2 liver resections and no gall bladder.  He laughed and said it has to do with the lack of available bile.....digestion swings from wild runs to constipation sometimes with great pain.  He was not concerned....he had no suggestions and just thought it was totally normal. Kim I know it is counterintuitive but have you ever increased your fiber? I have heard this might help....and Jeff fat is our enemy....really try to cut it right back and see if that helps your pain.  of course then there is the possibility that all these surgeries and all this chemo has just messed our digestive tract for good......sigh.....might as well have a glass of vino.  I toast you and salute you all my dear American friends...happy Thanksgiving.....

 

mags

janderson1964
Posts: 2215
Joined: Oct 2011

Mags I read it is mainly saturated I.e.fried foods which I rarely for peolple that had thier gallbladder removed. I remember talking to my onc after my second liver resection and he said that you have to remember you digestive system is 12" shorte which was a good point. However no one tells you how having your liver chopped three times can effect you which I am sure it does. The doctors never told me about possible issues from having my gallbladder removed. I had to find that out on my own. I still like to put some of the blame on chemo especially since I have so much more faith in surgery than I do in chemo.

Trubrit you are only expressing your opinion from your experiences. There is nothing wrong with that. That is what we are here for is to listen understand

Support and love each other. I have so much compassion for everyone here. 

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Oh my goodness let me tell you the fiber that I'm on.  Pills, gummies, vegs, flaxseed, metamucile, I've got so much fiber in me it's surprising that I'm not going or going - it's either a good thing with fiber or not.  I'm told it helps go potty, but I've also been told it can constipate.  Thank you for the Thanksgiving wishes.  It was a great day for me. 

Hugs!  Kim

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Even when we were healthy we had a hard time living with certain things that just come with life. Cancer really teaches you to live with a lot of stuff on an extremely tough level. We have got to try. LIFE wants to stay alive and live.

Before my surgery I shared your bathroom drama too countless of times a day. Now it's getting better, but still has it's challenges.

Wishing you a Happy Thanksgiving and better and better ones as we go.

Laz

marbleotis's picture
marbleotis
Posts: 706
Joined: Mar 2012

Kim,

5 years is a great accomplishment.  I know this changes us, in some good ways but also in some not so good ways.  This does not come with an instruction manual on how to handle the aftermath. 

Let no one judge us unless they walk in our shoes for 5 minutes!

This is not easy.

Please enjoy this day - you have earned it!

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Sue, thank you....I wish I could just hibernate through the entire holiday season. 

Hugs,

Cyn

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hope you had a good thanksgiving anyway.i hear all of you with the bathroom issues and mags you were right on.sometimes diareah gets a hold on me and the next thing i know i cant go.i have a flex sigmoid coming up on monday and i have not had a bm in two days.im praying that this is not something like a blockage.you are so right if things are not moving well then we always feel there could be something wrong.im glad you have made it 5 years clear but im sorry that this journey brings us all so many troubles...Godbless...johnnybegood

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

I'm praying that all goes well with the flex.  That is kind of like having a mini colonoscopy without putting you out.  I've always followed you as I'm thinking we were diagnosed around the same time. I'm always taking something to make me go if I'm not able to, especially the smooth move tea.  That helps me most of all and I'm trying to do the Miralax everyday but sometimes not.  It was a good Thanksgiving and hoping you had one as well.  Hoping that you can go the bathroom soon.  I'm not sure if you have to take any prep for the flex on Monday but hope that it helps.

Hugs!  Kim

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

As you know, for me it's the joint pain that is the lasting side effect (although my bowels are wonky too, but I think you're right that rectal cancer tx is harder on the digestive system in the long-term than what most of us get for colon cancer).  I started having periods of pretty intense depression once I realized that I was never going to be truly "fixed".  When I was in tx, I assumed that I would either make it, and be healthy again, or die.  I never understood that I would end up up in this no man's land, between living a full life, and not living at all.

I don't feel that I should ever complain about this, given all who have died who deserved life as much I do (including my own sister), but I think we try to be honest on this board about the cancer journey, so I guess I should be more honest about this aspect of it.

Yes, it's great to be alive, but it sucks to live with chronic illness.  Severe bowel problems, joint problems, and the like, make it impossible to live our lives as we once did, and that's a hard thing to accept, esp when you are as young as we are (at least in the context of cancer...I guess I'm kind of an old lady in the eyes of my kids).  On the one hand, facing years of life is great, and what we all fight for; on the other hand, facing a long life filled with suffering is pretty daunting at times.

I have no advice, as I haven't yet figured out how to deal with this myself.

But I am sending lots of hugs and love your way.

AA

UncleBuddy
Posts: 1019
Joined: Aug 2013

I just want to reach through the screen and hug all of you! I am so sorry that things are so difficult for all of you. You do deserve to complain, it sucks! I see what my brother is going through and I want to scream. It's not fair! I really hope you can all get some relief from your difficulties.

Lots of hugs!

Lin

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

The side affects are terrible even though you know you have no treatment left to help you.  I've checked into disability SSDI and can't get it because I'm not currently diseased and they don't see me as having a disability, yet I'm going up to 20 times a day.  I'm accepting this as I've seen many people get on disability that can work and just "won't" work so I'm thinking that maybe somehow I'm better off with some dignity behind me.  Have always been following your journey as well and wishing you the best.

Hugs!  Kim

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

just a note to say thanks for posting this thread Kim...it is something we do not talk about all that much or openly.  The pain the wounds the hurt is deep.....

thanks Kim.......mags

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

You're welcome and didn't mean to bring your name up but because I've been feeling the same way, thought it should resurface again.  We want to continue on with our life, but after what we have been through, the once dignity that you had that is now on display for every doctor you go to and with us rectal patients - everyone wants to put their figure up your anus and swoop it around and when you have a rectal tumor - it hurts.  My dignity has gone out the window and my modesty is nevermore.  I've even talked to people about my poop issues. They are probably thinking why are you discussing this, but when you go through this, nothing is off the table Laughing

Hugs!  Kim

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I had to go to the Doctors this week with my ever sore bum. I knew of course that I'd have to be examimed but when the medical assistant pulled out the anal speculum I said "I don't think so".

When the Doc came in I told him I'd be having no foreign object poked up my bottom, thank you. And I ddin't. HA!

Yeah, no dignity left. 

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Sore butt but they don't seem to understand.  It's humbling fact that you've accepted all the things you go through because of this disease is a norm for us now - yuck - I'm still wondering why doctors would go into this profession Laughing

Kim

janderson1964
Posts: 2215
Joined: Oct 2011

I have often wondered why anyone aspiring to become a doctor would choose oncology.

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meh_oregon
Posts: 4
Joined: Nov 2013

I know having rectum cancer sucks! It changes a person for the good and the bad. I was diagnosed Stage IV in January 2011 with cancer in the rectum and liver. I went into remission in the rectal area November 2011. Too bad the liver didn't want to cooperate as well. I have come to the opinion that once a person has rectum cancer, one never operates the same in that area. I was thankful when I could have a "squirt" come out. Constipation was a constant battle for me. The fiber pills and laxatives in pill format never worked for me. Lactulose did work, but taking that twice a day caused diarrhea and lots of accidents. Unfortunately for me in 2013 I had a side effect from the radiation two years after it was done. I kept being hospitalized for constipation and bleeding to the point that nothing was coming out. I complained about the pain and was doubling over. The cancer was in remission in the rectum, but the pain was still there. I was on so many laxatives that if I hiccupped, a squirt would come out wherever I was. Basically, think of changing a diaper after a blowout. CTs were done. The doctor was thinking I was losing it, but knew I never complained unless the pain was uncontrolled. It took three months and a week at a time in the hospital each month for them to finally figure out what was happening. Oh yeah, three radiologists couldn't even see what was wrong. Finally in March 2013 they found out what was going on. My rectum had collapsed. Gas could get through, but nothing else. Hence, surgery took place and a stoma was created. I was not excited for this, but did not have a choice.

Trouble over! Not! I was so lucky that what could go wrong did. Over the next three months four surgeries were performed to correct infections, incorrect healing, etc. This seemed to be worse than the actual cancer. 2013 has not been the most fun for me in the rectum area. I have an ostomy now and poop in a bag. Finding clothes to cover up the bag in my abdomen area is not easy. One can wear those “slimming” garments to help cover up the bulges, but too much pressure on the stoma brings pain and swelling. Finding pants is also horrible since the top band of the pants needs to be lower than the stoma. If it is above the stoma, the material has to be flexible. Pants hitting right at the stoma cause problems. One cannot control when you are going to poop and fill up the bag. At least with my rectum, I had some control. I can’t even control when gas is going to come out. Some people have thought the gas sounds were hungry sounds from my stomach. Just try and hug someone and they hear that or the bag starts growing during the hug. Yep, my world certainly has changed in the poop department.  At least I can’t get blamed for “farting” and smelling up the area. But, I do jokingly state that I can “burp” my bag. The one thing that is hard is that I'm divorced and was hoping to find another partner. Having an ostomy really does affect the love life. This is one area that cancer has beaten me.

For everyone who has rectum cancer, having an ostomy is a possibility. Some are temporary and some are permanent. If you are constipated and it is backing up too much causing other health issues, this might be an area you need to look into. If you have one done, you still have to go to the bathroom often to empty the bag, but at least it is coming out and it’s not just a squirt. You still have to watch what foods you eat and how it affects you. I am still leery in eating new foods and tend to stay with the “basics” when eating out.

 

Yeah rectum cancer sucks. One could say it is full of “sh**”. 

 

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I am glad to hear you have another anniversary of survival...they are precious...regardless of the trials and tribulations we have gone thru to get there.

May you have decades more of them.

Hugs,

Marie who loves kitties

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Long time, no see!  I'm so sorry you're angry.   I'm not angry per se, but it's frustrating to have to know where every toilet in a 20 mile radius is and how fast does it take me to get there.  I had severe anxiety about traveling to our daughters house for Thanksgiving because it's eight hours away.  How am I supposed to last in a car for even an hour without knowing if my guts are going to have a sudden, toxic reaction to whatever.  What a life we have, huh? 

Congratulations on making it to five years.  That's quite a milestone!  Here's to another five... and another five after that, and another five after that, and another five after that...and another .... and another...

 

P.S.  Have you by chance appealed your SSDI veto?  I'm sorry, but going to the bathroom 20 times a day is a disability, no matter what they say!

 

 

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

Kim,

I am sorry this disease is still causes you problems, that is certainly a reason to be angry.  But I am so happy to see you are still here.  Congrats to your 5 yrs too!!!!

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Really I'm not angry, but more frustrated.  First of all it's so good to see you posting again.  It's been a long time and miss you on the board.  I've tried SSDI and they won't take me.  Said I've been off work too long.  Had to retire after getting in a horrible accident in 1997 while left me paralyzed for 3 1/2 years.  I've only contacted one attorney but might try another.  I'm hoping that you post how you are doing on a seperate post.  I'd love to hear how you are doing.

Km

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