Unsuccessful Colon Surgery

What a niece!
So nice to see you so involved with your aunt:) Not sure what's going on with your aunt. What stage is she in? Remember she may be a bit further along than your friend and treatments may be quite different and her reaction to the treaments may also be different. I think you're doing a great job already by being there for her and seekeing support. As to what MD meant by saying tumor be can't removed and is attached to the bone ...it sounds as if you'll need to ask more questions of MD. Is your aunt willing to sign for permission, in order for you to have access to her medical information. I believe it's called a "Medical Release of Information" form. If so perhaps you could call MD to discuss prognosis with him/her via telephone. Hopefully there are others here who are familiar with these same issues. Obviously I'm not but wanted to reach out and let you know I'm concerned and praying.

Sending good vibes
Hi,

Your aunt is lucky to have such a wonderful person like you in her life to help her. I would agree with tara about the stoma or wound care nurse. They are a great help. She needs to find the right bag and supplies and that will make her life easier. I also agree if you can go along on her next visit and go in with her. Being a cancer survivor I remember how hard it was to take in all the information myself. Help her write down questions for the onc. I left spaces on my type written sheet for the answers. I even typed all the different chemos instead of expecting myself to write them down. I just circled what I was supposed to be getting. HUGS to you and your family!

Lisa F

It depends on the cancer...
My rectal cancer was squamous cell, and responded completely to radiation/chemotherapy. At first, it was thought to have invaded the abdominal wall.

Oh, sweet soul...caregivers are our angels! I echo the others...how lucky your aunt is to have such a caring niece!

You know from experience how important hope is. You also know it will be a battle. Your job will be challenging, but you remember, also, how important 'normal' is....

Hugs, Kathi

CherylHutch said:

Wonderful Niece!
First, let me echo what the other have said... your aunt already has a wonderful tool in getting better... and that tool is you!! Not everyone can be a caregiver... seriously, it takes an angel. We all know that family and friends care and worry and want to be able to do something to help... but not everyone is cut out to be a caregiver that is there when you need them and knows enough to ask questions, questions and more questions.

I hope your aunt will be feeling up to coming here to visit with us. To start, all she has to do is "lurk"... meaning she can come in and just read the different conversations/discussions that are going on. I bet that I can speak on behalf of a whole lot of us that just talking with others who are going or have gone, through the same illness is a huge relief. It takes away that fear of being isolated and going through something that no one understands.

I am NOT a "group support" kind of person, in that I just can't get myself to go to a support group in person. Yet, coming here I feel totally comfortable and able to discuss the things that scare me, or ask others how they deal with various side affects, etc.

If one were to have to say, in one word, what is the most important thing you can give someone who has been diagnosed with cancer (in any stage), I think that word would be "Hope". When a new hurdle arises, my first reaction is fear, followed by dread. But my oncologist (and many people here on this board) have talked to me with reasonable reasons/solutions, and as soon as that little feeling of "Hope" pokes her head through, the fear and dread disappear and I'm ready to carry on.

The fact your aunt's surgery did not go as you all had wanted... then it means you all have to take a deep breath and carry on with Plan B, C and D. Yes, it would have been great if the tumour could have come out in the one surgery, but the reality is it couldn't. So put that surgery and experience behind and onwards to the next plan.

You might want to ask her surgeon if any of the tumour was removed or did they have to leave the whole thing in. If so, then they will know exactly where to radiate, via the CAT scans. If part of the tumour did come out, then did the surgeon leave any small metal clips in the area that is to be radiated? The reason I ask that... I had an abscess form around my tumour. The surgeon removed the tumour and the abscess but the abscess was actually attached to my abdominal wall. Once the abscess was taken out, there would have been no way the radiologist could have known where to radiate, so my surgeon left metal clips around the borders of where the abscess was attached to the abdominal wall... hence, I could have radiation and it was directed exactly where it was to go.

So yes, there are oodles of questions. Here's a suggestion... why not buy your aunt a notebook which you could make it personal with stickers and some personal/inspirational messages/sayings. The notebook should be small enough that she can carry it with her at all times, in her purse, a pocket, wherever. Then, whenever a question comes to her, she can write it in her notebook... whether it's a question for her MD, her oncologist, her surgeon or even questions she wants to ask YOU! We all have questions, but if we don't write them down, by the time we see our various doctors, we totally forget them.

Keep us posted on how she's doing!

Hugggggs,

Cheryl

Care of ostomys and Home Health Nurses
I had surgery July 15th 2008 and had a permanent sigmoid ostomy. I have since gotten use to it and it gives me no trouble at all. The things I have found that really help in the ease of use and the ability to keep it as simple and painless as possible. I use the 2 piece that Hollister makes . It is called "Flextend and I use a closed pouch and just dispose of the pouch each change. The flextend allows me to use the adhesive part that first attaches to your skin for 4-6 days at a time with out changing it, and I just change the clip on clip off pouches as needed. When I have to change the part that is stuck to my stomach I use the Adhesive remover that comes in the small packets that you can order from Hollister and I open it and rub it all the way around the adhesive strip that holds the Flextend on. After about 5 minutes the glue has released enough that I take my pouch off and discard of it and then go to the shower. I then use my fingers to go around the adhesive tape and remove it from my skin (piece of cake). Then there will be a rubber seal that is very sticky and will be the part to master. I always allow warm shower water to run down my front while I am removing this. It allows me to hold onto the rubber seal with one hand and to push down the skin with the other. Do not try to pull it away from your skin, be sure to just push your skin downward and away from the rubber seal and the warm water makes it seem to separate easier. I always have a ziplock bag and dispose of the flextend into the ziplock until I finish showering. I wash with ivory to assure that no oils are around the stoma so that the rubber seal works good when I put the new one on. You will have to cut the Flextend at first until your stoma finally gets to where it doesn't shrink anymore due to surgery then you can order them cut to fit. The Ostomy nurse will go through all this with you. It seems to be a lot to digest but its really simple and just a matter of learn as you go. I actually go outside to change my pouch because of the smell I want to keep out of the house and as a courtesy to my family. A bathroom with a vent fan would be ok but my house is old enough that there are none.It takes me approx 2 minutes to walk out change pouches and be back in the house, and probably less than that. Hollister makes a wealth of ostomy supplies and there are places like Convatec, Hollister, etc that will send you samples until you are sure of what you want. I never liked the reusable pouches because no matter how you do it there always seemed to be a smell and I could never get the hang of emptying one and getting it folded back together right so the one time use pouch was the deal for me. My products from Hollister are....

HO18373 Closed Pouch Beige color - cannot see through...
HO14603 Skin Barrier w/tape Flextend Cut to Fit (use this type until you can order an already cut barrier)
SQ37436 Allkare Adhesive Remover Wipes 50/box (lemon smell and does a great removal job)

Hollister Products that I use are sold through byram healthcare and their number is 1 877 902 9726 ...They will step you through everything you need and all you have to do is call them and let them know who referred you to them (your ostomy nurse will do all of this for you if you ask she will set it all up for you) then every month all you have to do is order what you need for the next month. The pouches come in boxes of 60. I ordered a box of pouches, a box of skin barriers and a box of adhesive remover and was good for a month on the pouches . The barriers will last a lot longer because you only use 1 every 4-6 days. So the next month I ordered 2 boxes of pouches and now I have plenty of everything. I certainly hope this doesn't confuse you at all . It is really an easy thing to get set up with and your Ostomy nurse has done it a 1000 times and will be more than happy to do it all for you.....Good luck and God Bless.........