4th September 2006
Mom:
From an "old veteran" take my opinion for whatever it's worth... I too STILL have my port in, now nearly three years to diagnosis with Stage 3C Rectal with 6/10 positive nodes EVEN AFTER chemoradiation. I did chemoradiation for a couple months... waited a little while and had the surgery. To me, having the surgery was more scary than the chemo. I was the sole bread-winner, but ended up going out on short term disability about a month into my chemorad because of fatigue and lethargy mainly. My two kids understood enough to know that I was sick and they learned to hate that continuous infusion pump, and the days that I went in for extra chemo and radiation (which I told them were special lights). I brought them in one day to show them how I had to drop my drawers and hop on the table to get zapped.
You seem to be in a little different situation in that your kids (or at least some of them) are teenagers. Be honest with them. We were with ours. Listen to your body, and if you need a nap, then have a nap. Insertion of the port is easy. It took a couple hours out patient, and I was on pain meds for a few days. Ask your oncology nurse for some Emla cream and Tegaderm patches. I found it VERY painful getting the needle into the port. If you use the Tegaderm and Emla 45 minutes of so prior to getting "hooked up," then you won't feel them access you. You will see that having a port is great... you can take a shower, even with it accessed... just put tape around the Tegaderm that they use over your access wires, and put the infusion pump outside the shower. Stand with your back facing the water just to be safe and you will find it becomes easy to do.
As for the chemo itself, don't worry about it now. (or try not to!) They do pump you full of anti-nausea stuff before they start it, but get the scripts they give you prior to starting any chemo, this way it's available if you start with severe diarrhea or vomiting, etc. when you come home, you will be ALL SET.
Take help from others when offered. We had meal plans set up (arranged by a friend). They would come with dinner and put it in a cooler that we left outside... you won't want to be talking to everyone they come over. Don't give them an excuse to get to you! DON'T worry about the house for a while. Let the kids help out and clean up. Better Homes and Gardens is NOT coming over to do the "white glove test!" So, just relax. Get juices that you don't LOVE now, otherwise if you use what you love now, you will develop a strong association and distaste for the product when chemo is over.
As for prescriptions, don't hesitate to ask the doctor for an anti-anxiety drug (Klonopin, Xanax XR, Ativan), an anti-nausea drug or two (compazine or Zofran to have on hand), a sleeping pill (Ambien CR 12.5, Rozerem, etc.); and, anti-diarrhea medicine (Loperamide and Lomotil). TRUST ME, you are probably saying "I don't need these," but a time will come during your treatment when you say "I should have listened, I'm SO miserable," and there is someone filling in for my doctor because s/he is on vacation, or it's the weekend and you have to explain you're whole situation to them while you feel SO bad that you can barely hold your head up without getting waves of nausea, never mind waiting on hold on the phone speaking with some rude covering MD. Many cancer centers have their protocol and automatically give you scripts. PRINT THIS, and make sure you have ALL the scripts.
You WILL GET THROUGH THIS, and hopefully won't need medicine... better to be safe than sorry though.
I hope this helps,
Good Luck and remember one of us is usually here who has "been there, done that" and can offer advice, or just lend an ear to listen. :)
Best,
CancerDad :angel:
From an "old veteran" take my opinion for whatever it's worth... I too STILL have my port in, now nearly three years to diagnosis with Stage 3C Rectal with 6/10 positive nodes EVEN AFTER chemoradiation. I did chemoradiation for a couple months... waited a little while and had the surgery. To me, having the surgery was more scary than the chemo. I was the sole bread-winner, but ended up going out on short term disability about a month into my chemorad because of fatigue and lethargy mainly. My two kids understood enough to know that I was sick and they learned to hate that continuous infusion pump, and the days that I went in for extra chemo and radiation (which I told them were special lights). I brought them in one day to show them how I had to drop my drawers and hop on the table to get zapped.
You seem to be in a little different situation in that your kids (or at least some of them) are teenagers. Be honest with them. We were with ours. Listen to your body, and if you need a nap, then have a nap. Insertion of the port is easy. It took a couple hours out patient, and I was on pain meds for a few days. Ask your oncology nurse for some Emla cream and Tegaderm patches. I found it VERY painful getting the needle into the port. If you use the Tegaderm and Emla 45 minutes of so prior to getting "hooked up," then you won't feel them access you. You will see that having a port is great... you can take a shower, even with it accessed... just put tape around the Tegaderm that they use over your access wires, and put the infusion pump outside the shower. Stand with your back facing the water just to be safe and you will find it becomes easy to do.
As for the chemo itself, don't worry about it now. (or try not to!) They do pump you full of anti-nausea stuff before they start it, but get the scripts they give you prior to starting any chemo, this way it's available if you start with severe diarrhea or vomiting, etc. when you come home, you will be ALL SET.
Take help from others when offered. We had meal plans set up (arranged by a friend). They would come with dinner and put it in a cooler that we left outside... you won't want to be talking to everyone they come over. Don't give them an excuse to get to you! DON'T worry about the house for a while. Let the kids help out and clean up. Better Homes and Gardens is NOT coming over to do the "white glove test!" So, just relax. Get juices that you don't LOVE now, otherwise if you use what you love now, you will develop a strong association and distaste for the product when chemo is over.
As for prescriptions, don't hesitate to ask the doctor for an anti-anxiety drug (Klonopin, Xanax XR, Ativan), an anti-nausea drug or two (compazine or Zofran to have on hand), a sleeping pill (Ambien CR 12.5, Rozerem, etc.); and, anti-diarrhea medicine (Loperamide and Lomotil). TRUST ME, you are probably saying "I don't need these," but a time will come during your treatment when you say "I should have listened, I'm SO miserable," and there is someone filling in for my doctor because s/he is on vacation, or it's the weekend and you have to explain you're whole situation to them while you feel SO bad that you can barely hold your head up without getting waves of nausea, never mind waiting on hold on the phone speaking with some rude covering MD. Many cancer centers have their protocol and automatically give you scripts. PRINT THIS, and make sure you have ALL the scripts.
You WILL GET THROUGH THIS, and hopefully won't need medicine... better to be safe than sorry though.
I hope this helps,
Good Luck and remember one of us is usually here who has "been there, done that" and can offer advice, or just lend an ear to listen. :)
Best,
CancerDad :angel: