I WISH I WOULD HAVE KNOWN THAT........
Since you started on your cancer journey have you ever thought to yourself.." man, I wish I would have known that in the beginning".... Or ..." I wish someone would have told me that". I certainly have! This post is for the "newbies" and anyone else that can benefit. If there is anything that YOU know NOW that you wish you would have known BACK THEN....please add to this post. I will start with my #1 gripe.
PORTS - when I was informed I needed a "port" I had no idea what it even was muchless that there was different styles I could choose from. that there were different types and sizes. I was given a Port-a-cath. With the smallest access area they make. It is the size of a pencil eraser. It has been accessed so many times from chemo that scar tissue is in knots and they just about have to stab me to get it thru all the scar tissue since there is limited work space, IF I WOULD HAVE KNOWN..... I would have opted for a POWER PORT...with a quarter size access area. This opens up many options you don't have with a portacath such as being able to have CT contrast via your port instead of an additional line.
Any thoughts? From doing one thing different or more of or waiting for this or that or any thoughts. Note these are just our OPINIONS and not medical advice. I just know I would have asked about this port thing if I had any idea "options" existed. Thanks. :-)
Jennie
Comments
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WOW, that's a loaded
WOW, that's a loaded question
Actually I have a power port, it's not the size of a quarter, not even close, probably a bit bigger than a pencil eraser. But, I was never given an option of what type. I just knew I hated the PICC line I had. My oncologist ordered the power port, I'm happy with that. You certainly learn a lot along this journey. 0 -
what I know now..
Great Idea Jennie,
1. Power Port absolutely the way to go.. I have one
2. Didn't know I was getting tattoo'd for Radiation...
3. Female knowledge.. no one ever told me our parts shrink due to radiation and when you use them again it will feel like being a virgin..
4. Neosporin works best on the Radiation burns. Better then the RX silver stuff..
5. Hand and Foot syndrome is not just tingling.. it is also peeling and discoloration...
6. Nueropathy will make my feet shrink and my shoes fall off.
7. Use of a Laxitive is highly discouraged.. stool softner is ok.. but food is best to controll diarehea and constipation if possible. Always have Banana's and Peanut Butter in the house.
8. Buy a Donut pillow for during and after radiation and surgery as your butt will be sore
9. I find eating during the infusions helps me not feel queasey
10. bring a sweat shirt and a blanket to the infussion with you.. and wear socks..
Good Luck Newbies.. I hate to call myself an old hand at this but unfortunately I am ...0 -
power portsmokeyjoe said:WOW, that's a loaded
WOW, that's a loaded question Actually I have a power port, it's not the size of a quarter, not even close, probably a bit bigger than a pencil eraser. But, I was never given an option of what type. I just knew I hated the PICC line I had. My oncologist ordered the power port, I'm happy with that. You certainly learn a lot along this journey.
I tell people it is about the size of those miniture reese peanut butter cups.. mine is the bard power port.. there are several models.. I have even let people touch it at support groups .. I know I was so scared of it at first.. now I am so happy I have it..0 -
Wow...learning too!dmj101 said:what I know now..
Great Idea Jennie,
1. Power Port absolutely the way to go.. I have one
2. Didn't know I was getting tattoo'd for Radiation...
3. Female knowledge.. no one ever told me our parts shrink due to radiation and when you use them again it will feel like being a virgin..
4. Neosporin works best on the Radiation burns. Better then the RX silver stuff..
5. Hand and Foot syndrome is not just tingling.. it is also peeling and discoloration...
6. Nueropathy will make my feet shrink and my shoes fall off.
7. Use of a Laxitive is highly discouraged.. stool softner is ok.. but food is best to controll diarehea and constipation if possible. Always have Banana's and Peanut Butter in the house.
8. Buy a Donut pillow for during and after radiation and surgery as your butt will be sore
9. I find eating during the infusions helps me not feel queasey
10. bring a sweat shirt and a blanket to the infussion with you.. and wear socks..
Good Luck Newbies.. I hate to call myself an old hand at this but unfortunately I am ...
SmokeyJ..... News to me on power port SIZE..... I thought they were ALL large diameter! DMJ..... Girl, you blew me away with the shrinking vagina thing... REALLY???? Omg! You had a bunch of awesome tips from an "old timer"...... Be proud...that makes you a SURVIVOR! High Five!!! :-)
Jennie0 -
Adding
That my teeth would never be the same again. My gums bleed so bad at times and when mentioning it to my oncologist she said she never heard of it. Come on now, these doctors have to be aware of more of these things than they are letting on. And yes, the vagina does shrink (thinking this is for patients that have rectal cancer). It took me over a year before we could make love without the opening bleeding and it was so painful, sometimes still is. They never told me that either. My Power port was about the size of a large aggie (marble) and it stuck out and being that it was right on the collar bone hurt me especially when hugging someone.
Kim0 -
My husband has a power port
My husband has a power port and it is about the size of a quarter. I have had pic lines and they are not as convienant as the power port. I would also opt for the powere port.0 -
Interesting discussion...
I'll just add that I have a power port and, of course, don't know the difference between different types, but it seems to be working just fine. And the size of the "bump" is probably about quarter size. The access point is probably more dime like.
And, I don't think anything has shrunk on me ... ;-) except for my waist.0 -
PORT
the entry spot on my port is smaller than a dime and the incision runs right down the middle of it so I get 'stabbed'...quote "press back into the chair and take a deep breath"...also thought the 2 feet of tubing would have been cut down but nope its all wound up inside my shoulder and chest....I'm still convinced it is going to attach to my insides. and it aches and the seat belt aggravates the hell out of me when I'm driving. People are amazed they can actually feel it!
Interesting about our girl parts, don't care to repeat first time experience again!
wish I'd known about anything that might have helped with the neuropathy
PS Yall are great0 -
Colorectal Cancer Alliance discussionidlehunters said:Wow...learning too!
SmokeyJ..... News to me on power port SIZE..... I thought they were ALL large diameter! DMJ..... Girl, you blew me away with the shrinking vagina thing... REALLY???? Omg! You had a bunch of awesome tips from an "old timer"...... Be proud...that makes you a SURVIVOR! High Five!!! :-)
Jennie
This shrinkage thing came up there.. in a discussion board.... I really thought I was all alone in this occurrence till other women chimed in.. it was amazing to hear.. I just thought maybe it had been a while.. but low and behold there were all these women talking about it..No one ever told me Radiation to the pelvic area would do that. .. and everyday i would ask the nice boys running he radiation is they could see my tan lines.. little did i know they had a secret they weren't telling me.. I mean they saw it all and even tatoo'd me.. you'd have thought some one would have mentioned it..
that site has alott of good info.. http://mycrcconnections.ning.com/
site is very similar to this..0 -
Colorectal Cancer Alliance discussionidlehunters said:Wow...learning too!
SmokeyJ..... News to me on power port SIZE..... I thought they were ALL large diameter! DMJ..... Girl, you blew me away with the shrinking vagina thing... REALLY???? Omg! You had a bunch of awesome tips from an "old timer"...... Be proud...that makes you a SURVIVOR! High Five!!! :-)
Jennie
This shrinkage thing came up there.. in a discussion board.... I really thought I was all alone in this occurrence till other women chimed in.. it was amazing to hear.. I just thought maybe it had been a while.. but low and behold there were all these women talking about it..No one ever told me Radiation to the pelvic area would do that. .. and everyday i would ask the nice boys running he radiation is they could see my tan lines.. little did i know they had a secret they weren't telling me.. I mean they saw it all and even tatoo'd me.. you'd have thought some one would have mentioned it..
that site has alott of good info.. http://mycrcconnections.ning.com/
site is very similar to this..0 -
Colorectal Cancer Alliance discussionidlehunters said:Wow...learning too!
SmokeyJ..... News to me on power port SIZE..... I thought they were ALL large diameter! DMJ..... Girl, you blew me away with the shrinking vagina thing... REALLY???? Omg! You had a bunch of awesome tips from an "old timer"...... Be proud...that makes you a SURVIVOR! High Five!!! :-)
Jennie
This shrinkage thing came up there.. in a discussion board.... I really thought I was all alone in this occurrence till other women chimed in.. it was amazing to hear.. I just thought maybe it had been a while.. but low and behold there were all these women talking about it..No one ever told me Radiation to the pelvic area would do that. .. and everyday i would ask the nice boys running he radiation is they could see my tan lines.. little did i know they had a secret they weren't telling me.. I mean they saw it all and even tatoo'd me.. you'd have thought some one would have mentioned it..
that site has alott of good info.. http://mycrcconnections.ning.com/
site is very similar to this..0 -
I wish I would have known...
1. how to read Japanese...because there was so much neat stuff about things I wanted to know about (tegafur, CA19-9, Japanese treatment guidelines), in Japanese.
2. how to get journal access like in a med school library terminal.
3. a supportive, half interested, half informed oncologist on CA19-9, cimetidine, nutraceuticals, and experimental personalized treatments.
4. to get another CT scan months after first surgery for "stage III" anyway.
5. about uracil-tegafur (UFT) sooner after 1st surgery.
6. about advanced lab testing, and lined it up for the 1st surgery like Weisenthal Cancer Group and Rational Therapeutics, and, separately for molecular tissue markers.
7. discussions of lymph nodes with mets were as advanced two years ago as now.
8. where to get bulk supplies of everything.0 -
What a great idea Jeannie. A
What a great idea Jeannie. A couple of things come to mind for me.
1.CEA doesnt work for e everyone. Mine has always been around 1 evan when i had recurrences.
2.Dont wait more than six months for scans if you are stage 4. Once i reached 3 years NED my onc decided to wait 14 months for the next scan. Big mistake. I had an 8cm liver mass that was attached to my diaphram and a small peritoneal mass as well. If i had done the scan in 6 months the tumor probobly would have shown up on the scan before it spread outside of the liver.
3.If you have swelling pain and or redness in your arms or legs get checked immediately for a DVT(blood clot). I have had 3 and it is fairly common for people with CRC.0 -
I'm 8 years out...and, dmj....dmj101 said:what I know now..
Great Idea Jennie,
1. Power Port absolutely the way to go.. I have one
2. Didn't know I was getting tattoo'd for Radiation...
3. Female knowledge.. no one ever told me our parts shrink due to radiation and when you use them again it will feel like being a virgin..
4. Neosporin works best on the Radiation burns. Better then the RX silver stuff..
5. Hand and Foot syndrome is not just tingling.. it is also peeling and discoloration...
6. Nueropathy will make my feet shrink and my shoes fall off.
7. Use of a Laxitive is highly discouraged.. stool softner is ok.. but food is best to controll diarehea and constipation if possible. Always have Banana's and Peanut Butter in the house.
8. Buy a Donut pillow for during and after radiation and surgery as your butt will be sore
9. I find eating during the infusions helps me not feel queasey
10. bring a sweat shirt and a blanket to the infussion with you.. and wear socks..
Good Luck Newbies.. I hate to call myself an old hand at this but unfortunately I am ...
1. - I agree, it was my faithful friend thru both cancers...they even fed me thru it!
2. - I INSISTED I did NOT want a tat...they sent me home with a sharpie marker...my daughter has seen parts of me that she will remember forever *smile*...but no tats...
3. - Yup...now, it's about finding the best positions for me...even if I am 'on top'...*blush*
7. - I control mine, also, with foods....bananas, cheese, and chocolate. Also, if the going gets to rough, BRAT diet for a few days...
As far as my list...I think the biggest thing I learned is to take care of myself, first. I dismissed all of my symptoms at first because I was taking care of so many other people...including my ED daughter and my mom with cancer. Never again!!!!
Oh, and that just because I had cancer once, doesn't mean I can't face it again. My second was breast cancer. I tried to find someone to tell me that because of the chemo for the CRC I didn't need treatment for the BC...WRONG!
Hugs, Kathi0 -
Bingo to number 4! I amtanstaafl said:I wish I would have known...
1. how to read Japanese...because there was so much neat stuff about things I wanted to know about (tegafur, CA19-9, Japanese treatment guidelines), in Japanese.
2. how to get journal access like in a med school library terminal.
3. a supportive, half interested, half informed oncologist on CA19-9, cimetidine, nutraceuticals, and experimental personalized treatments.
4. to get another CT scan months after first surgery for "stage III" anyway.
5. about uracil-tegafur (UFT) sooner after 1st surgery.
6. about advanced lab testing, and lined it up for the 1st surgery like Weisenthal Cancer Group and Rational Therapeutics, and, separately for molecular tissue markers.
7. discussions of lymph nodes with mets were as advanced two years ago as now.
8. where to get bulk supplies of everything.
Bingo to number 4! I am getting a full body scan even though my doctor thinks it is not necessary. As I learned from another post, my body, my choice.0 -
Good topic
Jennie,
(1) I also have problems with the girl thing ~ actually went to a physical therapist who specializes in pelvic floor therapy (my doctor didn't even know there was such a physical therapist). Really helped me but you need to ask about it! I had Stage 3B rectal cancer.
(2) I had a sacral ala non-displaced fracture (pelvic fracture) in the area where they radiated me for rectal cancer 1 year post radiation. I would recommend everyone get a bone scan prior to cancer treatment and request a bone scan post cancer treatment. I now have Osteopenia and Osteoarthritus due to the radiation treatments in the spine/pelvic area and I am being treated with a high dose of Fosamax to try and build the bone loss back. I also have been in physical therapy for 3 months trying to build strength back in the muscle/bone area where I was radiated.
(3) No one told me when taking my calcium vitamin that you should take it with Vitamin D. Take it twice daily because the body only absorbs 600 mg at one time. Do not take your calcium vitamin with caffeine.
(4) Lots of changes in my eyes from chemo.
(5) Chipping of teeth as well from chemo.
Final statement ~ would I have changed my treatment plan of chemo, radiation, surgery and more chemo? No, but I would have opted for more information about the above problems so I could have made choices and possibly avoided some of the current health issues that I live with everyday.
"Minnie"0 -
dmj 101dmj101 said:Colorectal Cancer Alliance discussion
This shrinkage thing came up there.. in a discussion board.... I really thought I was all alone in this occurrence till other women chimed in.. it was amazing to hear.. I just thought maybe it had been a while.. but low and behold there were all these women talking about it..No one ever told me Radiation to the pelvic area would do that. .. and everyday i would ask the nice boys running he radiation is they could see my tan lines.. little did i know they had a secret they weren't telling me.. I mean they saw it all and even tatoo'd me.. you'd have thought some one would have mentioned it..
that site has alott of good info.. http://mycrcconnections.ning.com/
site is very similar to this..
I find it hilarious that you had male radioligist team. As an old man I had nothing but young girls working the radiation machine. We have no dignity with cancer!! Glad you had a surprise benefit.0 -
2 more things regarding
2 more things regarding surgery. I have had 4 major surgeries. They never informed me that i would wake up with a foley catheder. They never asked if i had a problem with motion sickness which in my case i do get motion sickness and as a result was very sick with severe head spins from the anasthesia. I learned after my first surgery to mention it to the aneshesiologist and they will give you something to prevent you from getting sick.0
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