My husband just diagnosed
My question to you is - what is your best advice/suggestion to me as his wife, mother of our two kids (11 and 5) to support my husband best possible during this ordeal? What can I expect? I know we are all different and react differently, but I'd nevertheless greatly appreciate your insights and experiences as I believe this will help us as a family.
Thank you!
Kirsten
Comments
-
Hi
Sorry to hear of his dx. Follow his lead if he wants to suffer alone let him, just let him know u r there for him. I liked being alone and knowing my husband was always ready to help or support me. I talked about my **** nonstop and he listened, I was so grateful,for that. He never complained about me getting up every 45 minutes to use the bathroom. Truly he was an angel.
Gathering the information like u r doing so important! He came for the important appointments and the ones I asked him to come to. I went to chemo with him but radiation i did every day on my own, until the last three, I wouldn't have finished those without him.
Theresa Mayhews book was my salvation along with this site. it will help u prepare for the tx and what to expect. I read all the past posts here and on the colorectal boards. I really learned a lot.
I am sorry for all that you have been thru and will go thru but there is lite at the end of this tunnel.. A Cure!0 -
Great input!Phoebesnow said:Hi
Sorry to hear of his dx. Follow his lead if he wants to suffer alone let him, just let him know u r there for him. I liked being alone and knowing my husband was always ready to help or support me. I talked about my **** nonstop and he listened, I was so grateful,for that. He never complained about me getting up every 45 minutes to use the bathroom. Truly he was an angel.
Gathering the information like u r doing so important! He came for the important appointments and the ones I asked him to come to. I went to chemo with him but radiation i did every day on my own, until the last three, I wouldn't have finished those without him.
Theresa Mayhews book was my salvation along with this site. it will help u prepare for the tx and what to expect. I read all the past posts here and on the colorectal boards. I really learned a lot.
I am sorry for all that you have been thru and will go thru but there is lite at the end of this tunnel.. A Cure!
Thank you for your valuable input. I went straight to Amazon to buy the book, so that is on its way now!
One other question: I've been reading a lot about nutrition during the tx and what to avoid. Do you have your own recommendations?
Thanks again for taking the time to respond to me.
Kirsten0 -
Foodsailormom said:Great input!
Thank you for your valuable input. I went straight to Amazon to buy the book, so that is on its way now!
One other question: I've been reading a lot about nutrition during the tx and what to avoid. Do you have your own recommendations?
Thanks again for taking the time to respond to me.
Kirsten
I stuck with the brat diet. Very little output was my goal. It worked for me as I had very little anal pain during and after tx. no veggies, roast beef sandwiches on white toast or chicken, Jack in the box croissant sandwich, milk shakes, I had the metal taste from the chemo, so these are the things that tasted ok to me. I don't eat any of them now! I am thin and I lost several pounds. Sure was fun putting it back on!
Start the brat diet now in order to niimize output, I was on it for one month prior to tx.
Get the biotene mouthwash now and have him start using that b4 tx starts. no shaving/waxing groin or legs prior to tx, will make skin more sensitive and more apt to burn. I took the nausea meds prior to first chemo and everyday that I was on chemo. Drink as much water as possible so u he does not dehydrate. I am sure others will chime in with other tips soon.0 -
Foodssailormom said:Great input!
Thank you for your valuable input. I went straight to Amazon to buy the book, so that is on its way now!
One other question: I've been reading a lot about nutrition during the tx and what to avoid. Do you have your own recommendations?
Thanks again for taking the time to respond to me.
Kirsten
I mainly ate white bread toast with a little butter, bananas, toasted cheese sandwiches and drank Ensure to make certain I got my vitamin/mineral supplements daily. I did not want to put a lot on my stomach because what went in came out as liquid.0 -
What to do
As you have already stated, everyone is different and will react differently, so some things may or may not work for your husband. His appetitie will probably be normal the first couple of weeks unless he has a problem with the chemo the first week. They pushed steroids and anti-nausea meds with my first chemo and I was really hungry that night at dinner. Tell him to take his anti-nausea meds as soon as he feels it coming on. He will see his med oncologist once a week and his radiation oncologist at least once a week during tx. Nothing is too small to mention to them and you can always call in to the NP/nurse in between times. I agree that the less in equates to less out and the last few weeks I ate very little. I seemed to like white, cold, diary products; cottage cheese, yogurt, milkshakes. Ensure and/or Boost is a good idea as already mentioned. He will want to keep his stools soft, so if the radiation is not doing it for him, he may want to take a stool softener, at least early on in tx. (Probably won't be a problem later on unfortunately.) Also there is no glory in suffering in pain. Doctor's won't push it,(as they shouldn't), but if he need pain meds, he needs to ask for them. I'm sure others will chime in about patting vs wiping, baby wipes, Aquaphor, spray bottles. We are here for him and for you. It's a hard few weeks, but the good thing is this has a high cure rate. I am 2.5 yrs out of tx and doing well. A few side effects for sure, but I am alive to deal with them. Good luck.0 -
Foodsmxperry220 said:Foods
I mainly ate white bread toast with a little butter, bananas, toasted cheese sandwiches and drank Ensure to make certain I got my vitamin/mineral supplements daily. I did not want to put a lot on my stomach because what went in came out as liquid.
Thank you for your recommendations. Makes me feel much better prepared to support my husband through this next period. Thank you both so much :-)
Kirsten0 -
What to doDog Girl said:What to do
As you have already stated, everyone is different and will react differently, so some things may or may not work for your husband. His appetitie will probably be normal the first couple of weeks unless he has a problem with the chemo the first week. They pushed steroids and anti-nausea meds with my first chemo and I was really hungry that night at dinner. Tell him to take his anti-nausea meds as soon as he feels it coming on. He will see his med oncologist once a week and his radiation oncologist at least once a week during tx. Nothing is too small to mention to them and you can always call in to the NP/nurse in between times. I agree that the less in equates to less out and the last few weeks I ate very little. I seemed to like white, cold, diary products; cottage cheese, yogurt, milkshakes. Ensure and/or Boost is a good idea as already mentioned. He will want to keep his stools soft, so if the radiation is not doing it for him, he may want to take a stool softener, at least early on in tx. (Probably won't be a problem later on unfortunately.) Also there is no glory in suffering in pain. Doctor's won't push it,(as they shouldn't), but if he need pain meds, he needs to ask for them. I'm sure others will chime in about patting vs wiping, baby wipes, Aquaphor, spray bottles. We are here for him and for you. It's a hard few weeks, but the good thing is this has a high cure rate. I am 2.5 yrs out of tx and doing well. A few side effects for sure, but I am alive to deal with them. Good luck.
Thank you so much for your valuable insights. I'm taking careful note of it all. My husband is currently in quite some pain and is taking percocet (8 pills @ day) and is having trouble with constipation. He is currently on stool softener, dried prunes and apricots but still not good. He is anxiously awaiting treatment to start to get this whole ordeal over with.
I'm really appreciative about your input. I feel very much 'at home' to be asking these various questions as I feel better prepared for this battle ahead.
Thanks again,
Kirsten0 -
Painkillerssailormom said:What to do
Thank you so much for your valuable insights. I'm taking careful note of it all. My husband is currently in quite some pain and is taking percocet (8 pills @ day) and is having trouble with constipation. He is currently on stool softener, dried prunes and apricots but still not good. He is anxiously awaiting treatment to start to get this whole ordeal over with.
I'm really appreciative about your input. I feel very much 'at home' to be asking these various questions as I feel better prepared for this battle ahead.
Thanks again,
Kirsten
Painkillers will make u constipated. U can however drink enough water to offset the constipation. Please look up brat diet. Where is your husband being treated? Do they have experience with anal cancer. Did you get a second opinion? I was also stage ii but there was one month between dx and tx for me to get 2nd opinion and do research.
How was your husband dxed. Colonscopy? I did not have pain. Where is the pain coming from? Biopsy site? I had no pain until the radiation burn 3 weeks into treatment. Where is his tumor located? I had minimal symptoms prior to dx, constipation not really, but less than normal, hard little pellets, but went every day, felt like I was never empty, small amounts of blood on tp, and a wet feeling in my anal area and itchy, also pencil stool. At time of colonscopy they did biopsy and removed several other large pre cancerous polyps. Many people here are dxed by colonscopy and biopsy done then, therefore no pain as colon has no feeling. Some people have regular biopsy because it is close or outside anus, this can be very painful. Needle biopsy also can be done.
I just want to make sure that u r getting the best care possible in your area.0 -
Kirsten
I had pain when i was frist diagnosed.Its been a year today that i had my last treatments.I feel good i have no pain .Sometimes it will really be hard on your husband.But he will get thur it .The last 2 weeks are the hardest .When i would feel really down .I would get my md 3 player out and my headphons.Put some up lifting music on that really helped me .I took it with me to Chemo and to radiation.When i started getting a lot of diarrhea the Dr said i could take imodium a-d ;And i still take it when i have diarrhea.And when i had a lot of diarrhea i would not drink my water cold i would keep it out of the frig that helped .And i stayed away from raw vegetables ,beans, oily food .I liked rice pudding ,or rice with sugar and butter,Toast was someting i would eat a lot and rolls it made my tummy feel better.He has to take care of his self and rest when he feels tired.It well be like a bone weary tired.Its better to eat small portions about ever 3 hours and not have the big meals 3 times a day.Till he gets over his treatments and feels better.I hope this will help.0 -
PainPhoebesnow said:Painkillers
Painkillers will make u constipated. U can however drink enough water to offset the constipation. Please look up brat diet. Where is your husband being treated? Do they have experience with anal cancer. Did you get a second opinion? I was also stage ii but there was one month between dx and tx for me to get 2nd opinion and do research.
How was your husband dxed. Colonscopy? I did not have pain. Where is the pain coming from? Biopsy site? I had no pain until the radiation burn 3 weeks into treatment. Where is his tumor located? I had minimal symptoms prior to dx, constipation not really, but less than normal, hard little pellets, but went every day, felt like I was never empty, small amounts of blood on tp, and a wet feeling in my anal area and itchy, also pencil stool. At time of colonscopy they did biopsy and removed several other large pre cancerous polyps. Many people here are dxed by colonscopy and biopsy done then, therefore no pain as colon has no feeling. Some people have regular biopsy because it is close or outside anus, this can be very painful. Needle biopsy also can be done.
I just want to make sure that u r getting the best care possible in your area.
My husband is being treated at Greenwich Hosptial (CT). They are very experienced with anal cancer and we both feel the team treating my husband is outstanding. The radiologist has worked at Yale for many years and his comment when my husband was diagnosed was: "This is my preferred type of cancer as it just melts away!". The medical oncologist is very knowledgeable and according to many other doctors sought after across the country. He is an integrative oncologist, so we both feel we are in excellent hands. We did talk to them about a second opinion, and got names to see the teams at Sloan Kettering and Yale, however, they are only available for consultations mid Feb onwards, and my husband simply can't wait for that with that amount of pain. Plus, the radiologist could confirm from his years at Yale that my husband is getting exactly the same tx - the only difference is that the radiation equipment is newer that at the other two hospitals. Its is only 6 months old (IRMT).
During Dec my husband had some pain in his butt and thought it was hems. It never bled nor itched. He went to the doctor Jan 3 who immediately sent him to a gastroent the same afternoon. He did a colonoscopy on him the following morning, and had pet/cad scans the next day. And Jan 6 he saw the oncologist - so all in the course of 4 days! During the colonoscopy they took a biopsy of the tumor (then size of walnut). It is located fairly close to the anus towards his back, but you can't see it. He didn't have pain after the colonoscopy/biopsy. The pain has been increasing but the percocets have so far been doing its job. Last night, he was in so much pain that he was up the better part of the night. He could only find a bit of comfort by standing up. It is killing me to see him in so much pain, and I should say that my husband NEVER complains about any pain, so I know this is really bad.
So in short, tx can't start a minute too soon and we feel my husband is in the best of hands. Today is picc line day and Thur tx starts.
Again, thanks a million for your concerns, questions and very valuable comments. I'm so grateful.
Kirsten0 -
Good suggestionsshirlann54 said:Kirsten
I had pain when i was frist diagnosed.Its been a year today that i had my last treatments.I feel good i have no pain .Sometimes it will really be hard on your husband.But he will get thur it .The last 2 weeks are the hardest .When i would feel really down .I would get my md 3 player out and my headphons.Put some up lifting music on that really helped me .I took it with me to Chemo and to radiation.When i started getting a lot of diarrhea the Dr said i could take imodium a-d ;And i still take it when i have diarrhea.And when i had a lot of diarrhea i would not drink my water cold i would keep it out of the frig that helped .And i stayed away from raw vegetables ,beans, oily food .I liked rice pudding ,or rice with sugar and butter,Toast was someting i would eat a lot and rolls it made my tummy feel better.He has to take care of his self and rest when he feels tired.It well be like a bone weary tired.Its better to eat small portions about ever 3 hours and not have the big meals 3 times a day.Till he gets over his treatments and feels better.I hope this will help.
Thank you for your suggestions. It all helps :-) I love the part about the music and I'll get that prepared for him.0 -
Kirstensailormom said:Pain
My husband is being treated at Greenwich Hosptial (CT). They are very experienced with anal cancer and we both feel the team treating my husband is outstanding. The radiologist has worked at Yale for many years and his comment when my husband was diagnosed was: "This is my preferred type of cancer as it just melts away!". The medical oncologist is very knowledgeable and according to many other doctors sought after across the country. He is an integrative oncologist, so we both feel we are in excellent hands. We did talk to them about a second opinion, and got names to see the teams at Sloan Kettering and Yale, however, they are only available for consultations mid Feb onwards, and my husband simply can't wait for that with that amount of pain. Plus, the radiologist could confirm from his years at Yale that my husband is getting exactly the same tx - the only difference is that the radiation equipment is newer that at the other two hospitals. Its is only 6 months old (IRMT).
During Dec my husband had some pain in his butt and thought it was hems. It never bled nor itched. He went to the doctor Jan 3 who immediately sent him to a gastroent the same afternoon. He did a colonoscopy on him the following morning, and had pet/cad scans the next day. And Jan 6 he saw the oncologist - so all in the course of 4 days! During the colonoscopy they took a biopsy of the tumor (then size of walnut). It is located fairly close to the anus towards his back, but you can't see it. He didn't have pain after the colonoscopy/biopsy. The pain has been increasing but the percocets have so far been doing its job. Last night, he was in so much pain that he was up the better part of the night. He could only find a bit of comfort by standing up. It is killing me to see him in so much pain, and I should say that my husband NEVER complains about any pain, so I know this is really bad.
So in short, tx can't start a minute too soon and we feel my husband is in the best of hands. Today is picc line day and Thur tx starts.
Again, thanks a million for your concerns, questions and very valuable comments. I'm so grateful.
Kirsten
I had a pic-line too .Its better to have that because the day there done with his treatments they will take it out.But most people that have a port it stays in about a year.I was like your husdand i was in a lot of pain too i couldnt sleep or any thing.When he gets done with his treatments after a few weeks he will start feeling better it just takes time for that to heel...Shirley0 -
picc lineshirlann54 said:Kirsten
I had a pic-line too .Its better to have that because the day there done with his treatments they will take it out.But most people that have a port it stays in about a year.I was like your husdand i was in a lot of pain too i couldnt sleep or any thing.When he gets done with his treatments after a few weeks he will start feeling better it just takes time for that to heel...Shirley
Good to know about the pick line. I wasn't quite sure why the doc didn't go for the port. I wish we could fast forward the time ....0 -
Hi sailormom--sailormom said:Good suggestions
Thank you for your suggestions. It all helps :-) I love the part about the music and I'll get that prepared for him.
You've gotten some very good advice and as you can see, we all sort of take care of each other here. The one thing that is very important to remember is that your husband must stay well-hydrated! He should drink lots of water. Also, as far as eating goes, his appetite may take a nosedive as mine did. My oncologist told me to JUST EAT! Whatever tasted or sounded good to me, I ate, even if it wasn't food that I would normally eat due to poor nutritional value, such as Ramen noodle cups. I would never eat those under normal circumstances, but I craved salty things while going through treatment and those tasted good to me. I would suggest that he try to get a little protein in each meal or snack, which is why I would not recommend the brat diet for too many days at a time. It is good for slowing down diarrhea, but contains no protein source and is meant to be short-term. If diarrhea is a side effect for him, try Imodium. If that fails, ask for Lomotil by prescription. Also, rinsing regularly with a solution of water and baking soda or salt may help ward off mouth sores, so I would have him begin that on day one. As for skin issues, Aquaphor in the beginning can keep the skin moist. Once the burning comes on, ask for a prescription of Silver Sulfadiazine (which must be completely removed before radiation treatment) or try the following: Domeboro, pure aloe vera, liquid from Vitamin E capsules. Okay, I'll stop for now, as not to overload you with info!
I wish your husband the best and hope you'll keep us posted on his progress during treatment. We are here to help you, so just ask!0 -
So many ...
So many good suggestions and I agree. He will need to remember as you probably did to just take baby steps ( One day at a time ). You want to hurry and be done but this is a process. As you move along continue to consult others but don't let yourselves become overwhelmed with too much info at one time. I was diagnosed with Stage3 AC about a year ago and finished treatment last April. My tumor was 6cm so quite large and I was also in horrible pain even before treatment. I found standing and massaging my butt cheaks to be the only relief. Sometimes I would kneel and rest my head on the side of the bed !!!! I was taking a lot of pain meds., oxycontin gave me some help tho takes a while to ween off of but also helped with pain from radiation burns later. I agree with the comment about when feeling sick from chemo to just eat anything you can. For a short time he will just need any kind of caloric intake he can get....but remember its all short lived, we are all here to tesstify to that. My family tried to be understanding but this is a tough one for kids because they don't like to talk about their parents butt!!! You will have to make some humor out of it, and this will help them be less uncomfortable. Your whole family is in my prayers, keep in touch.0 -
Sailor momeihtak said:So many ...
So many good suggestions and I agree. He will need to remember as you probably did to just take baby steps ( One day at a time ). You want to hurry and be done but this is a process. As you move along continue to consult others but don't let yourselves become overwhelmed with too much info at one time. I was diagnosed with Stage3 AC about a year ago and finished treatment last April. My tumor was 6cm so quite large and I was also in horrible pain even before treatment. I found standing and massaging my butt cheaks to be the only relief. Sometimes I would kneel and rest my head on the side of the bed !!!! I was taking a lot of pain meds., oxycontin gave me some help tho takes a while to ween off of but also helped with pain from radiation burns later. I agree with the comment about when feeling sick from chemo to just eat anything you can. For a short time he will just need any kind of caloric intake he can get....but remember its all short lived, we are all here to tesstify to that. My family tried to be understanding but this is a tough one for kids because they don't like to talk about their parents butt!!! You will have to make some humor out of it, and this will help them be less uncomfortable. Your whole family is in my prayers, keep in touch.
Sounds like you are in excellent hands. You are so lucky to have that new machine. Best of luck to you and your husband. You are a wonderful wife. We are here for you, whenever you need us. No question is too personal to ask.0 -
I Had A Portsailormom said:Pain
My husband is being treated at Greenwich Hosptial (CT). They are very experienced with anal cancer and we both feel the team treating my husband is outstanding. The radiologist has worked at Yale for many years and his comment when my husband was diagnosed was: "This is my preferred type of cancer as it just melts away!". The medical oncologist is very knowledgeable and according to many other doctors sought after across the country. He is an integrative oncologist, so we both feel we are in excellent hands. We did talk to them about a second opinion, and got names to see the teams at Sloan Kettering and Yale, however, they are only available for consultations mid Feb onwards, and my husband simply can't wait for that with that amount of pain. Plus, the radiologist could confirm from his years at Yale that my husband is getting exactly the same tx - the only difference is that the radiation equipment is newer that at the other two hospitals. Its is only 6 months old (IRMT).
During Dec my husband had some pain in his butt and thought it was hems. It never bled nor itched. He went to the doctor Jan 3 who immediately sent him to a gastroent the same afternoon. He did a colonoscopy on him the following morning, and had pet/cad scans the next day. And Jan 6 he saw the oncologist - so all in the course of 4 days! During the colonoscopy they took a biopsy of the tumor (then size of walnut). It is located fairly close to the anus towards his back, but you can't see it. He didn't have pain after the colonoscopy/biopsy. The pain has been increasing but the percocets have so far been doing its job. Last night, he was in so much pain that he was up the better part of the night. He could only find a bit of comfort by standing up. It is killing me to see him in so much pain, and I should say that my husband NEVER complains about any pain, so I know this is really bad.
So in short, tx can't start a minute too soon and we feel my husband is in the best of hands. Today is picc line day and Thur tx starts.
Again, thanks a million for your concerns, questions and very valuable comments. I'm so grateful.
Kirsten
I had a port and they left it in about one month after my final treatment. The doctors said they felt comfortable taking it out that soon in my case. Everyone is different in the awful journey but most seem to have great outcome. My chemo doctor told me at the beginning if I had to have cancer this is the one to have. He said they have most success in treatment of this type cancer.0 -
picc linesailormom said:picc line
Good to know about the pick line. I wasn't quite sure why the doc didn't go for the port. I wish we could fast forward the time ....
sorry you have to be here. great advice from all. one more: please do not remove the picc line until you are sure that your hubby is ok. i had mine removed the day after i stopped my last chemo and then that next day, i had to go into the hospital due to diarrhea, infections and low blood counts and etc. so i had to have IV's in both arms for many meds. would have been easier to receive all meds. if i had kept the picc line. sephie0 -
Veess mommyveesmommy said:My husband was just
My husband was just diagnosed in august with stage 4 as well, very scary. Im praying for all of you on this board! We have 5 kids together, youngest is 3. I feel very alone in this, thanking God I found this site!
Hi, welcome officially, sorry you have to be here, but glad you found us. How is your husband? How are you.0
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