Introduction from Dianne

diwilfong4 · New User Joined: 26 Aug 2009 Posts: 3

Hello All,
My name is Dianne and I'm from the Northeastern corner of PA.
I registered on here because my best friend, Pat, has survived colo-rectal cancer, surgery, chemotherapy, and now has to deal with a stoma and draining system.
I am on here, to be quite honest, because I have lots and lots and questions about the type of cancer my girlfriend went through, and about what she has to deal with now.
I also have questions about how likely it is that a person will get colo-rectal cancer and how likely it is that a person who has to have a colostomy after treatment and surgery have been taken.
I almost lost Pat, so I'm kind of having a hard time coping with the feelings relating to that, and to what Pat has to deal with on a daily basis. I want to certainly be supportive, but not invade her dignity or privacy. It is in my heart to be supportive and to help her cope with her day to day difficulties, as well as to get my questions answered.
If I seem to be rambling between everything, I apologize. So many things running through my mind about the cancer and treatments I asked about, and so many things running through my mind in regards to my friend's plight. I worry constantly about her quality of life, how she is really doing, and I often wonder what all I could or can do to help.
If anyone has answers or comments, your kind help will be graciously and deeply appreciated.
Thanks for letting me introduce myself, and tell you a little about what I am going through.

Sincerely Yours,
Dianne

sheila · Senior User Joined: 24 Jul 2008 Posts: 480

hello and welcome! sorry you have to see your friend go through all of this -Ive been watching mom go through this cancer battle for almost 4 years now. Its an overwhlming battle that effects all who care and is involved. Mom has started with colon cancer ,went through 2 surgerys chemo and radiation therapies(very rough on the bodys immune system.
she has had the bag since because she didnt have enough good to reverse it.Its different for everyone, mom also had beaten the colon cancer and was diagnosed with liver unrelated. she agin had surgery and chemo-she is now due for another scan in about 2 weeks were all scared of the results. For some it can be caught in time and others have a constant battle . The bag is a huge adjustment and mom was upset for a long time-but now has adjusted and claims its more of a pita! The best thing you can do for your friend is let her know your there for her-if you can help with anything and that you will be there when she needs to vent her frustrations and fears. My mom refused but if you can get her to join the forum she may get relif in talking it out and finding solutins to particular problems for the experience of othersthat have actually been there done that. she may not want to participate but even reading of others problems may help her out.
Dont invade her space by asking too many questions(some are ok).Let her bring up the topics.Then you go with it. If she has questions you can also find her info and if shed feel comfortable you can go to the doctor with her...because two sets of ears are always better than one (and take notes she can reference on later) when they are upset its hard to retain all the info given in such a short visit. I hope others respond to you-they are all battling their own dilemmas so be patient they arent always quick to respond ..but they are here and when they aare able they do.
prayers and support for you and your friend.

REB · Posted: Wed Aug 26, 2009 2:03 pm Post subject: Re: Introduction from Dianne

Dealing with a colostomy was hard for me. It is a real self-image killer. I knew mine was only temporary, so that might have played a part in my acceptance of it. Had it been permanent I would have been forced to accept it.

After a month, it almost became a normal part of my life. And for a time, I could forget about it. But those days I had to deal with irritations or leaks made me hate it. Twice at work I had it leak, and it was such a pain to mess with it in the public restroom. I learned to carry extra cloths.

Most of the time it didn't interfear with my life, but I was afraid to go swimming with the kids, camping with the cubscouts, and things like that. I have heard about people swimming with them and doing other active things, but I wasn't ready to try it.

I know someone who has dealt with one since they were a teenager, and they are now in their 50's. For them it is not a big deal. So it may just take time to accept it. I only did it for 7 months. Bob Hope did it for years and no one could tell.

If I have to loose my colon in the future, I would try to get what is called a J-Pouch. I also looked into a process where you flush out the small intestines and wear a cap insted of a bag.

I am sorry your friend is going through this. I looked at it as I was going to do what ever I had to do to keep living.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - 04-09-08 FOLFOX regimen and Avastin.
04-28-08 Colostomy Reversal
06-02-09 3 Tumors in the adipose tissue.
06-23-09 Start FOLFIRI and ERBITUX chemo.
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI, continue ERBITUX
01-27-10 Tumors in Liver and Adrenal Gland
01-28-10 start FOLFIRI and ERBITUX chemo.
Age Diagnosed 40. Current Age:43

DulcimerGal · Posted: Wed Aug 26, 2009 10:00 pm Post subject: Re: Introduction from Dianne

Dianne - you are a terrific friend, and Sheila gave great advice in my opinion.

I'm like REB - it was the self image piece that was most distressing for me and I had a ileostomy for only two months, not near as long as he did. If your friend enjoys clothes, shopping and working out she may find it very difficult. I could not wear most of my favorite outfits - my abdomen was swollen from the surgery to remove the cancer (long vertical scar to above belly button) and that combined with the bag made pants that used to fit just impossible to wear, tops had to be loose and more flowing, none of my cute Cache style clothes fit, and there was totally no way I could wear workout clothing, swim or excercise without the damn thing leaking or showing, I felt like a freak.

I cleaned my husbands car out for his birthday - and it leaked all over me.
I went to the movies and it leaked.
One night - my husband had an allergy attack and I had to drive him to the hospital (I was not supposed to drive, only 4 weeks out from the major surgery) we were there for hours while they worked on him with ephedrine etc. we got out finally - got in the car and the bag seal broke again - we were exhausted - had to drive an hour to get home and then had to change my bag - which took another 30 minutes before we could get any rest.

Those who have the bag know that once it leaks - the next thing you have is a rash if the surrounding skin is not cleaned immediately. The rashes are so hard to get rid of and so painful....

My husband was so good - helping me change the bag when the time came and keeping calm because I really did complain a lot about it. I did not go back to work until after the reversal, and I could not bear going out and worrying about it. I remain very thankful to my surgeon who agreed to try the reversal before doing the final 5 months of chemo, I absolutely did not want to do the second round of chemo with the bag on....I was afraid I would never get rid of it.

I figure it was my lesson from God on learning that pride in one's appearance is the last thing to worry about. It sure was hard for me to learn though, and I guess if the cancer ever came back I would go with the bag again if that meant living.......

You can see that for some of us it is pretty traumatic. I now have had the reversal and it's been a year almost exactly but I still recall all the horrible details! Even now my re-sected colon does not work that great - I have to manage bathroom trips very carefully and be ready for immediate pressing needs at any time....other times I will be in the bathroom for an hour depending on how my J pouch is deciding to process whatever I have eaten! It's all good though - Better than the bag!

So yes - you will have to be very understanding for your friend. It's bad enough knowing you have a deadly disease but I would take the chemo and radiation over a colostomy if I had to choose which was worst.
Sorry this is so long! I think I am purging....!!

Just my experience!
Cheers
Dulcimergal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

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