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grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi everyone, Just wanted to catch everyone up to date. I have finished my chemo and radiation. Yippee!! I still have the port in. Does anyone know if they leave it until after surgery, or will I get this sucker out??? Doesn't really bother me, but I would love to take a long hot shower. I'm sure you all know the feeling. LOL. I will have a 4-6 week break before surgery. I go to the surgeon on the 19th and to the chemo doctor on the 21st. Also will the chemo doctor tell me if I will need chemo after surgery and how much, before having surgery?? I just want to wait as long as possible before surgery. I almost feel back to normal right now, except a little tired. No bleeding and almost normal bowel movements. What would happen if I chose to not have surgery?? I know that may sound dumb, but I just want a normal life. They're also saying that I will have to have a permanent colostomy after surgery. The way I look at it, the longer the surgery is away, the longer before I have to deal with the colostomy. That's the part I'm dreading the most. How long does it take before you get used to having the colostomy and are not afraid to go anywhere??? Thanks everyone for being there. This is a great group of people. I hope I can be as helpful to someone as you all have been to me.
Love and prayers, Judy H(grandma047)

KrisS
Posts: 232
Joined: Apr 2003

Go for the surgery. Although radiation shrinks down the tumor a great deal in some cases, surgery is almost always needed to try to go for a cure. If you have radiation once, they are reluctant to do it a second time because of cumulative tissue damage unless it is the only thing left to do to to control severe pain after recurrance.

I suspect that your oncologist may make some general recommendations, but will wait until hearing the surgeon's report and getting the pathology reports before making final decisions about further chemotherapy.

Before my surgery I had notknown of anyone with an ostomy. I found there are a lot more people who have them than you would have guessed.

I got an ileostomy. I had had an obstruction due to radiation damage and had been unable to eat much of anything, so I had to be on TPN for 8 wks prior to surgery. I was so excited to be able to eat within a couple of days, I loved my ostomy from day one!

I thought I would have to buy new clothes, but didn't. I no longer very often wear the few pairs of snug jeans that I have because they are not quite as comfortable. Although I threw out one of my bathing suits, I found that my ostomy bag was incredibly inconspicuous under my other one. I was out walking, doing my own shopping within 2 wks of being discharged from the hospital and I flew to visit my sister 4 wks post op.

I had a few problems within the first month or so, and consulted an ostomy nurse for some additional pointers, but now I spend less than 30 minutes a week messing with it.

I would think that they would leave the port in until they know whether you might benefit from some post op chemo. Sounds like your port is different than mine. Mine is completely under my skin so that unless it is accessed I can take all the showers I want. Since I am stage 4 and still receive chemo, I have had my port since 6/02.

Best wishes,

Kris

MelStar
Posts: 31
Joined: Feb 2004

Hi Judy! Congrats on finishing your chemo and radiation. I have a port under my skin too, right in the way of the old bra strap. Why don't they ever stop and ask the women where they want them so they won't get in the way?? Anyhow, apparently we're going to leave it in for quite some time. I never did get a straight answer. My grandmother also had one, same type as mine, and hers stayed in for five years. Personally, I think her oncologist got sick of hearing her griping about it!! :-)

Can you tape a garbage bag over your port and take a shower? You might try it and see if it works!

Hugs!!

Melody

taraHK
Posts: 1961
Joined: Aug 2003

Hi Judy. Congratulations on completing your chemoradiation! Hoorah! I certainly understand the feeling of not wanting to ever see the inside of the hospital again. However, I do want to urge you very strongly to go ahead with the surgery. Gotta give it your best shot, to completely rid yourself of the malignancy forever. I hope you are able to squeeze as much enjoyment out of this "break" as possible. Glad you are feeling reasonably well.

I didn't know for sure whether I would have post-surgical chemo until the biopsy results came back -- about 5 days after surgery. In my case, I did have to have post surgery chemo, because I had one positive lymph node. But I think it is possible I would have had the chemo anyway. My doctors were pretty aggressive, which was just fine with me -- I wanted to get rid of it all forever!

I had a permanent colostomy (my tumour was very low). Of course it is an adjustment - and I had my low moments. But, honestly, it is not that big a deal now. It took a while to sort out what pouch system I preferred, and to get the routine down, but now it is just a routine. I got out of hospital on a Friday (8 days after surgery). That day, I walked around the track. That Sunday, I ate out at a restaurant. I wear the same clothes as I did before. (Right after surgery, I went out and bought "old lady" underwear - only to discover that my presurgical bikini undies worked the best!). I hike, swim, travel, etc. I am now able to irrigate, which gives more freedom - this is something you might want to consider later (I had to wait until my chemo was finished before starting). There is a terrific discussion group at uoa.org -- full of information as well as support.

Wish you all the best.
Tara

aspaysia's picture
aspaysia
Posts: 257
Joined: Nov 2003

I felt better right after the pre-surgical radiation/chemo than I had in a long time because the tumour shrank and was not causing pain. But the surgeon did not want to put off the operation. NOT A GOOD IDEA! Get that alien out of your body before it gives you any more trouble. It could spread and then you will be sorry. It is not over until it is removed. Dead or alive,
They will decide on chemo afterwrds. One thing at a time. And don't be anxious about the ostomy. It was the least of my worries considering the alternatives. I fiddled with it for a bit and settled into a routine and now it is my friend. The little cutie. It saved my life. If you need any pointers you can easily find them here or at an ostomy site.
Good luck. Now go do the right thing.
Asp

tattoos
Posts: 10
Joined: Feb 2004

Don't worry! It is not as bad as it seems. I thought it was going to be the worse thing in the world for my aunt. My aunt got use to it in no time. She went everywhere and anywhere. The only thing that she had to do was wear a shirt a little longer, nothing too short. You couldn't tell it was there. At least when you get diarrhea, you don't have to have a sore chapped behind. LOL...It just became a usual daily routine. She could even fart like the best of us! Don't let this keep you from having the surgery. You would regret it later by not having it done. The sooner you are able to have the surgery, the better. Too many people put things off and that is what hurts them the most. I hope this helps some.

Terri (Best wishes and God bless)

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Judy--go for it!--get rid of that little sucker!
Coulda done with a bag during my chemo Judy--my arse burnt so much during the diarrhea bouts it was like eatin n spittin chilli's all day for 48 hours--yuk!
Then again now the chemo is over for the time being I shouldn't whinge--hey some of my friends have bags n get on fine as these guys have said.
As for the port n bra stap--"I believe the japs are workin on it!--he he!"
Sorry--as resident joker in lieu of Spongebob had to put a funny in there!
Hey Judy--yu'll be ok girl--surgery is not that bad---so long as they give yu plenty of meds yu could get run over by a truck n still laugh about it.LA LA land was great except when I had to pass my first motion then it hurt like hell--just think--you're gunna miss all that fun with a bag!
You will be ok Judy--yu got all of us here rootin 4 yah!
luv n huggs - kanga n Jen

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