Eleda wrote:Michael
Brava tape from coloplast is brilliant,,,,
It's semi circle so fits perfectly
Not sure Uve tried it, if not deffinatly do,,,, were Lucky in Ireland because they will give u anything y need to get through Ur chemo or ostomy process,
I know u lot are limited with Ur insurance companies.
Adele
Caat55 wrote:Adele,
I haven't seen you post in a while, glad to hear you made it through first round.
I also had, have the rock in my throat which doesn't go away, a fan or cool temps make it worse. My tongue and roof of mouth feel funny as well. I can only tolerate warm liquids. My feet and hands are intolerant of cold, I wear garden gloves, New of course, to hold veggies, eggs when preparing meals? Sadly, each infusion is a little more challenging. I went Thursday, pooped out Saturday and Monday back to work. This final time, sick immediately and for about 7 days.
Started an strengthening program for pelvic work, abs and glutes yesterday. A 12 week course to prepare for reversal. I have to schedule a barium enema according to surgeon.
I can't wait to be able to tolerate cool, want to go kayaking and enjoy some time camping. I notice I don't heal well if nicked, bumped or mosquito bit.
Susan
NHMike wrote:Caat55 wrote:
Susan
I need to get to work on those exercises - reversal is in two weeks!
I started with Yoga this morning. Will do some more yoga in my office and then do machines tonight after walking. Also did some barbell squats this morning. I'll try to get back to doing deadlifts.
tminor5 wrote:My husband likes me to change his wafer every weekend. So we take it off so he can shower without it once a week. We use to have problems with leaking and the edges peeling, the wafer sliding around but I've gotten it to stay. It would stay longer, but he likes to replace it every week. I have to put the wafer on because there is no way he would be able to. I use a thin layer of paste on the inner edge only. I was also given skin tac that I use on the skin the whole area the wafer and extenders are. I tried the hypafix on the edge of the wafer, but with his skin it wouldn't stick long. We use the adapt barrier extenders from Hollister. After I put the wafer on, but before the extenders I put my hand (with a glove on, cuz the bag is not on yet) I put my hand over it to kind of heat his skin up and it helps the paste and the wafer stick to his skin better. Then I put the extenders on and put my hands over that also.
Now he does shower as much as he wants. The only days he doesn't are his chemo days and the 48 hours he wears the pump. If he will have to change his bag when he's done he will just shower and get it wet and then change it when he gets out. If he doesn't I got a shower cap that covers the bag and I clip it in the back. A little water gets in there so just the tip of his bag is usually wet. He then uses a hair dryer on low heat and dries his wafer (it also helps the adhesive restick).
Our problem is when we go to take the wafer off, its sticking so I it kinda pulls his hairs that have grown and his skin. I try my hardest for it not to hurt. But I know it does.
Caat55 wrote:NHMike wrote:Caat55 wrote:How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S
This is the surveillance schedule that my oncologist at Dana Farber recommended:
Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.
I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.
You might ask your oncologist what his or her surveillance protocol is.
Thanks MIke, see you again in six months just didn't sound right. I will email my surgeon and second opinion oncologist to see what their protocal is as well.
S
Caat55 wrote:The doctor ordered CEA. I have to go in to see him to get results. I am going in August when I go for port flush. I am going to ask for scan. Surgeon wants an all clear before I go in for reversal. I am going to see a local surgeon to see if she will repair some of the damage done to my bum during radiation, skin tags, as I am not using stuff done there, will definitely be less painful.
Tongue is feeling better. Made a beautiful cake I saw on British Baking Show which my friends said tasted yummy, I thought tasted bad. Actually made it twice and gave first to chickens but second tasted same, so shared with friends. Guess my taster is still off, looked so pretty though I wanted to taste it.Tolerated yogurt today. Air conditioning is necessary doe to heat up around 104 or 105 but painful.
Hope you had a good vacation, get answers from S tan ford, USC Shana.
Shana wrote:
Sounds like a good plan, Susan
Sorry you couldn't enjoy your cake but I bet your tastebuds will start kicking in soon once the chemo is totally out of your body. It's hotter there than in Sonoma, I imagine it's a challenge with it being so hot yet AC hurts... crazy to even think about and I know that most people don't understand because it is such a bizarre side effect!
Vacation was great, met a lot of people dealing with CRC and felt proactive getting involved in fundraising with Climb for a Cure. It was exhausting but glad I did it. Hoping to get some ideas from next Dr opinion and remaining positive since I am thankfully feeling well right now.
Did I mention that my daughter is expecting TWINS in December? I have two new motivators to keep me going now
Caat55 wrote:Shana wrote:
Sounds like a good plan, Susan
Sorry you couldn't enjoy your cake but I bet your tastebuds will start kicking in soon once the chemo is totally out of your body. It's hotter there than in Sonoma, I imagine it's a challenge with it being so hot yet AC hurts... crazy to even think about and I know that most people don't understand because it is such a bizarre side effect!
Vacation was great, met a lot of people dealing with CRC and felt proactive getting involved in fundraising with Climb for a Cure. It was exhausting but glad I did it. Hoping to get some ideas from next Dr opinion and remaining positive since I am thankfully feeling well right now.
Did I mention that my daughter is expecting TWINS in December? I have two new motivators to keep me going now
Congrats! That is new to keep you going, doubled. My husband is an identical twin, the two of them are off this weekend climbing some mountains. A solid connection right from the beginning, lucky you!
Funny things happen when you travel. The young TSA agent at Oakland Airport said "I am so glad to help you, can I ask you about your surgery?" Her mom was having half of your intestines removed, getting a stoma and she had lots of questions, never met anyone before. It was strange, but she was so sincere I answered her questions.
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