In our first month

R_Foster

Hi everyone,

First off I would like to say I hope everyone here going through treatments or family/friends assisting loved ones with them all the best.

My wife was diagnosed with T3 N1 rectal cancer at Shands. Luckily after dealing with a few doctors in our town and months of testing without results we were able to go to Gainesville for help. She is in her first week of chemo and radiation. Seems to be feeling good so far. Not sure how this rates on the cancer scale but any cancer to us is a bad thing. So I apologize and don't mean to appear as if we are the only ones in the world dealing with this. It's just all new to both of us.

My question(s) is what to expect during her treatments? How can I prepare to help her and keep her comfortable along with getting her better. She goes for treatment five days a week and is home on weekends. We are about 3 1/2 hours away so she stays in Gainesville during the week and I watch and ensure our 7 year old son continues his life as normal.

I don't know what to expect each week she comes home but really want to know what I can do to comfort her and give her the best possible care a husband can.

Sorry if this seemed confusing or rambling but I am trying to get a game plan together to help my wife and get through this.

Take care,
Ron

mp327

Welcome Ron
Hi Ron--I'm so sorry that your wife's diagnosis has brought you to this support forum. But bless you for being her advocate and trying to learn more about how to help her get through her treatment. I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. You mention rectal cancer as your wife's diagnosis, so I'm a little unsure about what chemo drugs she might be receiving. However, that aside, she will most likely experience extreme fatigue, nausea, possible loss of appetite with weight loss, mouth sores, hair loss, skin irritation/burns, diarrhea and painful urination. I will try to address each of these, based on my own experience.

1) Fatigue--When her body tells her it needs rest or a nap, she needs to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause her serious digestive problems. Whatever she feels like eating and agrees with her, that's what she should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that she routinely rinse with a solution of water and salt or baking soda several times a day. If she gets mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If she experiences hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, she has already been given some soothing creams to use to keep her skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. She can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. She just needs to make sure that there are NO traces of any creams, lotions or ointments on her skin prior to radiation. I would also recommend getting some men's boxer shorts for her to wear to reduce contact with her skin. She may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime she has a BM or urinates, her body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that she won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, she's probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get her a spray bottle to keep filled with water by the toilet. When she urinates, she can spray her genital area with water and keep the urine from burning her skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes for her. Again, she needs to take in plenty of fluids, as this will help dilute her urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects.

The most important thing that you can do for your wife is exactly what you are already doing. Be there for her, offering comfort, support and, most importantly, love. This will not be an easy time, but she will get through it. I wish both of you all the very best and hope you'll come back here and let us know how she is doing. I will keep her in my prayers.

Martha

z

mp327 said:

Welcome Ron
Hi Ron--I'm so sorry that your wife's diagnosis has brought you to this support forum. But bless you for being her advocate and trying to learn more about how to help her get through her treatment. I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. You mention rectal cancer as your wife's diagnosis, so I'm a little unsure about what chemo drugs she might be receiving. However, that aside, she will most likely experience extreme fatigue, nausea, possible loss of appetite with weight loss, mouth sores, hair loss, skin irritation/burns, diarrhea and painful urination. I will try to address each of these, based on my own experience.

1) Fatigue--When her body tells her it needs rest or a nap, she needs to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause her serious digestive problems. Whatever she feels like eating and agrees with her, that's what she should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that she routinely rinse with a solution of water and salt or baking soda several times a day. If she gets mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If she experiences hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, she has already been given some soothing creams to use to keep her skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. She can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. She just needs to make sure that there are NO traces of any creams, lotions or ointments on her skin prior to radiation. I would also recommend getting some men's boxer shorts for her to wear to reduce contact with her skin. She may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime she has a BM or urinates, her body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that she won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, she's probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get her a spray bottle to keep filled with water by the toilet. When she urinates, she can spray her genital area with water and keep the urine from burning her skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes for her. Again, she needs to take in plenty of fluids, as this will help dilute her urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects.

The most important thing that you can do for your wife is exactly what you are already doing. Be there for her, offering comfort, support and, most importantly, love. This will not be an easy time, but she will get through it. I wish both of you all the very best and hope you'll come back here and let us know how she is doing. I will keep her in my prayers.

Martha

Ron
Welcome Sorry you have to be here. I know that theres some retal cancer survivors on the colon board. If you go there, you can do a search on the specific discussion board. The anal and rectal treatment is similar but like Martha said the the chemo and radiation is different. Or if you ask for help and copy and paste what you typed here onto the colon board, I'm sure someone will reply.

Martha you are so good, and what Martha said is what most of us experience.

I wish you and your family well. Lori

SueRelays

mp327 said:

Welcome Ron
Hi Ron--I'm so sorry that your wife's diagnosis has brought you to this support forum. But bless you for being her advocate and trying to learn more about how to help her get through her treatment. I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. You mention rectal cancer as your wife's diagnosis, so I'm a little unsure about what chemo drugs she might be receiving. However, that aside, she will most likely experience extreme fatigue, nausea, possible loss of appetite with weight loss, mouth sores, hair loss, skin irritation/burns, diarrhea and painful urination. I will try to address each of these, based on my own experience.

1) Fatigue--When her body tells her it needs rest or a nap, she needs to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause her serious digestive problems. Whatever she feels like eating and agrees with her, that's what she should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that she routinely rinse with a solution of water and salt or baking soda several times a day. If she gets mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If she experiences hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, she has already been given some soothing creams to use to keep her skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. She can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. She just needs to make sure that there are NO traces of any creams, lotions or ointments on her skin prior to radiation. I would also recommend getting some men's boxer shorts for her to wear to reduce contact with her skin. She may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime she has a BM or urinates, her body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that she won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, she's probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get her a spray bottle to keep filled with water by the toilet. When she urinates, she can spray her genital area with water and keep the urine from burning her skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes for her. Again, she needs to take in plenty of fluids, as this will help dilute her urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects.

The most important thing that you can do for your wife is exactly what you are already doing. Be there for her, offering comfort, support and, most importantly, love. This will not be an easy time, but she will get through it. I wish both of you all the very best and hope you'll come back here and let us know how she is doing. I will keep her in my prayers.

Martha

Martha pretty much nails it
Martha pretty much nails it all!!! The only thing I would add is that for me I bounced back and forth from constipation to diarrhea....so I had to have things to treat both. And when you are constipated, I had the absolute most painful bowel movements imagineable. Anything she can do to prevent that she'll want to do.

One other thing comes to mind quickly. Most women are used to being the ones to take care of everyone. It was very hard for me to NOT be in that role. My spousal equivelent, tried so hard immediately to do EVERYTHING! It might be feel like an invalid, before I was ready! I felt good through MUCH of my treatment, and it was so important for me to feel normal!! I needed to still do things, housework, cook, etc...whatever I had the energy to do. I would encourage to see what she needs....not what you might think she needs !!!

Good luck to you both! We are here for you whether you want to vent, ask questions, or just talk!!!

sephie

hi
everyone has given you great hints. just a note: i was soooooo stupid and would not take pain meds nor enough immodium to help slow up the diarrhea because i was terrified of having hard bowel movements/ that is the wrong thing to do . i ended up in pain all the time and ended up in ER and in the hospital for 12 days mostly due to unending diarrhea and dehydration!!!! i drank tons of water and gator aid trying to keep hydrated but it did not work. so when it is time , take the immodium and the pain meds. she is blessed to have you!!!! sephie

pdees

mp327 said:

Welcome Ron
Hi Ron--I'm so sorry that your wife's diagnosis has brought you to this support forum. But bless you for being her advocate and trying to learn more about how to help her get through her treatment. I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. You mention rectal cancer as your wife's diagnosis, so I'm a little unsure about what chemo drugs she might be receiving. However, that aside, she will most likely experience extreme fatigue, nausea, possible loss of appetite with weight loss, mouth sores, hair loss, skin irritation/burns, diarrhea and painful urination. I will try to address each of these, based on my own experience.

1) Fatigue--When her body tells her it needs rest or a nap, she needs to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause her serious digestive problems. Whatever she feels like eating and agrees with her, that's what she should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that she routinely rinse with a solution of water and salt or baking soda several times a day. If she gets mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If she experiences hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, she has already been given some soothing creams to use to keep her skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. She can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. She just needs to make sure that there are NO traces of any creams, lotions or ointments on her skin prior to radiation. I would also recommend getting some men's boxer shorts for her to wear to reduce contact with her skin. She may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime she has a BM or urinates, her body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that she won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, she's probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get her a spray bottle to keep filled with water by the toilet. When she urinates, she can spray her genital area with water and keep the urine from burning her skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes for her. Again, she needs to take in plenty of fluids, as this will help dilute her urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects.

The most important thing that you can do for your wife is exactly what you are already doing. Be there for her, offering comfort, support and, most importantly, love. This will not be an easy time, but she will get through it. I wish both of you all the very best and hope you'll come back here and let us know how she is doing. I will keep her in my prayers.

Martha

in my first week of chemo/radiation
Read the answer you gave to Ron. That answered so many of my questions. Read several of your other also and you have been so informative. Right now my biggest problem is sore mouth, a little nausea and one night had some dull pain in my back and hip area. Sure learn more on this forum then from the doctors or nurses. Thanks so much.

melbas2

sephie said:

hi
everyone has given you great hints. just a note: i was soooooo stupid and would not take pain meds nor enough immodium to help slow up the diarrhea because i was terrified of having hard bowel movements/ that is the wrong thing to do . i ended up in pain all the time and ended up in ER and in the hospital for 12 days mostly due to unending diarrhea and dehydration!!!! i drank tons of water and gator aid trying to keep hydrated but it did not work. so when it is time , take the immodium and the pain meds. she is blessed to have you!!!! sephie

The first days
Ron, your wife is blessed to have you. I know it's as tough on the caregiver as it is for the patient. Shortly after I was diaganosed my husband had to leave for upstate NY for 6 motnhs for work. He set it up with my sisters to get me back & forth from my apppointments. I think he made it home 1 day a week during this, so he didn't actually see what I was going thru. He couldn't understand why I didn't keep house like I used to or cook, and it was very hard to explain it all to him. He saw the burns due to the radiation and then he was actually back home when I started learning about my loss of bone marrow. He actuall went to the doc with me and sat durning the bone marrow sample. He is now working back at home so he's able to with me to appointments and when I go into the hospital for the Atgam treatments, and is less likely to complain about the house, or my lack of appetite, which lifts a huge load off my shoulders. He is a supervisor for a steel corporation which is very physical work, so he's not much help around the house. He works 7 days a week 10 - 14 hours per day. But one of the nurses hooked me up with a service for women with cancer called cleaningforareason.org. You might want to check it out for your wife. Good luck and god bless. Melodie