My Mom - Just Completed Chemo & Radiation (updated 10/27)

Marynb

chrisfromny said:

Thanks Marynb
Thanks for the info Marynb! She's officially off the juice now and she's only going to be drinking water. She gets bored of it quickly...but if that's what is going to help...then it's definitely worth it.

Can you elaborate on the blue powder for the sitz bath?

I'm going to call the radiation oncologist here shortly to see if she should just stop all the creams. They definitely seem to cause irritation more than anything.

We've been eating mosting white bread and white rice. I'll make her some chicken tonight for dinner and see how she handles that. I never knew that lean proteins helped healing. Thanks for that!

Thanks again,
Chris

Hi chris
I was told to get the blue aquarium powder by the hospital. I wish I could remember the name of it. We stopped into the pet store on the way home from the hospital and they knew just what I was looking for. I never told them what is was for and that I didn't have fish! It was very soothing and helped expedite the healing. It was bright blue granular and came in a big bag. It was quite soothing.

They hospital also told me to increase lean protein consumption during and after treatment to promote healing. Chicken is good. Also I ate a lot of baked egg custards, fish, scrambled eggs. Small amounts several times a day is best. The hospital had the custards available at the radiation lab. My sister made batches in individual servings. Peanut butter on white bread or small bagel is good. Try to have her avoid all acidic foods.

You sound like such a good son! Bless you! She will heal and all will be well. It must be hard to see her suffer, but be assured that the worst is in the past and soon your Mom will feel much, much better!

Hugs.

Mary

chrisfromny

Marynb said:

Hi chris
I was told to get the blue aquarium powder by the hospital. I wish I could remember the name of it. We stopped into the pet store on the way home from the hospital and they knew just what I was looking for. I never told them what is was for and that I didn't have fish! It was very soothing and helped expedite the healing. It was bright blue granular and came in a big bag. It was quite soothing.

They hospital also told me to increase lean protein consumption during and after treatment to promote healing. Chicken is good. Also I ate a lot of baked egg custards, fish, scrambled eggs. Small amounts several times a day is best. The hospital had the custards available at the radiation lab. My sister made batches in individual servings. Peanut butter on white bread or small bagel is good. Try to have her avoid all acidic foods.

You sound like such a good son! Bless you! She will heal and all will be well. It must be hard to see her suffer, but be assured that the worst is in the past and soon your Mom will feel much, much better!

Hugs.

Mary

Thank you!
Thanks Mary! I'm going to check into the blue aquarium powder. We're also going to try a cap full of iodine mixed in a sitz bath as suggested by the rad. onc. That is also supposed to help with the drying process.

I'm running out to the grocery store soon. She'll be so excited that she can have eggs! She's been avoiding those too since they aren't on the BRAT diet...but she's getting restless when it comes to food...that's for sure!

The peanut butter is also a great idea. She's been eating plain toast and I know she's tired of that as well.

Thanks for the kind words. I love my mom with everything I have...and will be here as long as she needs me

Thanks again,
Chris

7243

chrisfromny said:

Thanks Ann
Thanks for the comments Ann. Although I'd never wish this on anyone, it's nice to hear from people who have been in the same situation. I haven't heard of the xenaderm ... but will definitely ask about it. Even water burns at this point, so my guess is that any cream will too (they all have so far) ... but anything that speeds up the healing process is worth it so long as she can stand it.

I'm hoping the Lomotil works, too. So far this morning we've been diarrhea free!

Thanks so much,
Chris

Domoboro's
I hope your mom is feeling better, even just a bit. I used Domoboro's solution soaked telfa pads a few times a day to the burned areas... this really helped me. I also got the sitz bath kit and when I knew it was time for a BM I would have the bag full of warm water and would run it over my burned buttock skin between cheeks and my perineum (outside of vagina). The entire bag. This was so soothing. I also used Aveeno Oatmeal soaks in the tub ... the first 10 days were the worst. my open areas wept and oozed which was awful. I actually slept on my back with my backside on a pillow with a towel under me ... no panties and my legs frogged and propped on pillows. I also placed a telfa pad between my buttocks to catch some of the serrous fluid. This is just a darn awful time ... but the healing does come pretty quickly. The burning on urination improved first ... and then the BM pain let up a bit, however I used the sitz bag rinse for weeks to keep me clean. I did use narcotics for about 2 weeks straight, around the clock. Use a stool softner. I'm not certain if you said your mom had diarrhea, however, the narcotics WILL cause constipation ... and if you think diarrhea is bad, that is worse. Okay ... hang in there. Now, your mom will need to consider the use of a vaginal dialator pretty soon. If they didn't give her one, her insurance should pay for a good set. Regardless of sexual activity, she will want to keep her vagina open for exams, etc. This is important ... although maybe a touch sensative, however I'll put money on the fact that you have a good relationship with your mom in that you can talk about this.

Be sure to run anything you might do by the radiation oncologist.

law522

Dog Girl said:

Advice for your Mom
I so relate to the screaming while urinating or having a bm. I had my two siblings with me for about the last week of tx and then a week after tx. I would put a washcloth in my mouth to try to stifle the screams (and of course turn on the fan in the bathroom), but my sister told me afterwards that my big brother (older and 6'3"; 250+ lbs) would sit and cry when he heard me. Burns were my worst part of tx and I had to go on oral morphine around the clock for about 10 days. I'm usually very sensitive to medicine, but I ended up needing 2 slow release tablets/day and then immediate release tablets every 4 hours around the clock. She will have to ask for better pain relief however as doctors are understandably not going to offer stronger meds unless lesser meds are not doing the job.

While I did not try this (this forum wasn't up when I went thru tx in 2009), others have recommended dermabliast I believe it is called. I think this is OTC and is used on new mothers after giving birth. If she can lie on her bed with her bottom exposed and a fan turned towards her that may help. I personally used Aquaphor a lot along with the Silverdene. And I just wore gowns and went commando. I used white towells wherever I sat as they would be easy to wash and bleach if I leaked a little blood or stool. Just have her pull up her gown when she sits down; she will still be covered, but it will save her from having to change her gowns a lot. (Hope this isn't too much TMI back atcha!) As others have said, healing does start fairly quickly. She's just going to have a rough few days and there's no denying that.

As for food, I never lost my taste for cold diary (milkshakes, cottage cheese, yogurt), and I know that Greek yogurt has a lot of protein which is very important in the healing process. I don't know what the probiotics would do, so you may want to research that. You can put honey in the plain Greek yogurt which makes it a bit more palatable. I will
keep your Mom and you in my prayers.

TY for dermablast suggestion
TY

law522

Marynb said:

Hi chris
I was told to get the blue aquarium powder by the hospital. I wish I could remember the name of it. We stopped into the pet store on the way home from the hospital and they knew just what I was looking for. I never told them what is was for and that I didn't have fish! It was very soothing and helped expedite the healing. It was bright blue granular and came in a big bag. It was quite soothing.

They hospital also told me to increase lean protein consumption during and after treatment to promote healing. Chicken is good. Also I ate a lot of baked egg custards, fish, scrambled eggs. Small amounts several times a day is best. The hospital had the custards available at the radiation lab. My sister made batches in individual servings. Peanut butter on white bread or small bagel is good. Try to have her avoid all acidic foods.

You sound like such a good son! Bless you! She will heal and all will be well. It must be hard to see her suffer, but be assured that the worst is in the past and soon your Mom will feel much, much better!

Hugs.

Mary

TY for the suggestion
for the aquarium blue stuff---I will put this on my shopping list too

Yippee I can eat eggs!!
I have chickens that give me eggs everyday that is GREAT news
are hardboiled ok too? how about mayonaise can I eat that?
I am trying to get my ducks in a row so I am ready to kick butt when
I have to start this treatment
I am going to start a thread on eating
THANKS
XO Linda

law522

Hi Chris
I am from upstate NY too and I am newly diagnosed with this awful awful Cancer
I went in for routine hemmorhoid removal on Oct 3rd
and on Oct 9th I got the "call" that they found cancer cells
I have spent the last 2 weeks worrying and going to appointments
seems all I do is hurry up and wait lately.

I am just beginning my journey and I am very scared.

Any help, guidance or recommendations that you or your mom can give me as I prepare for
this ungodly journey is appreciated ( i did read NOT to drink juice TY for that info)

I hope your Mom is feeling better soon
XO
Linda

law522

Lorikat said:

Bless you Chris for being
Bless you Chris for being there with your Mom! I remember those screams as well.... My daughter came home to take care of me the week I returned home from MD ANDERSON. She was worried about my burns not being cared for properly as I came home and ended up in isolation at our local hospital needing blood transfusions and with neutropenia. She stayed isolated with me and did ALL the wound care on ALL OF MY BURNS FRONT AND BACK! I told her I was sorry she had to see my "everything" and her response was "hmmmmm, must not have been paying attention, I don't remember seeing ANYTHING".

Anyway, it has been one year since treatment and I have my 12 month scans on Halloween! I went white water rafting in June, liked it so much went back in July. I guess I'm saying I MADE IT THROUGH! And so will your Mom, God willing..... Lorikat, packing for Houston!

TY Lori
Hope you have a great trip, It is good to hear from others
that have been through this and are able to resume life
to some normalacy
Congratulations on one year that is GREAT
XO Linda

Marynb

law522 said:

TY for the suggestion
for the aquarium blue stuff---I will put this on my shopping list too

Yippee I can eat eggs!!
I have chickens that give me eggs everyday that is GREAT news
are hardboiled ok too? how about mayonaise can I eat that?
I am trying to get my ducks in a row so I am ready to kick butt when
I have to start this treatment
I am going to start a thread on eating
THANKS
XO Linda

Diet
Hi Linda,

You will want to eliminate fats from your diet because your body will not be able to digest it and it will aggravate your diarreah. What you will eat during treatment will be very different from your post treatment diet. During treatment you may feel nauseous and the diarreah will be worse. During treatment you may want to stick to baked or mashed potatoes, clear broths, no dairy, low fat, lean protein in small portions several times a day. For some reason bagels and cinammon toast really appealed to me during treatment. Once treatment is complete, will want to start adding foods one at a time, slowly. During treatment, all m foods were low fiber and white....chicken, fish, potatoes, broth, noodles plain, rice, toast, bagels, I also added custards, and organic apple sauce. You will know what appeals to you and what will stay in. No acidic foods at all! Lots of clean water!

So, before treatment, try to eat really well! Eat veggies now because you won't be able to digest much during treatment.

Take care!

Mary

chrisfromny

7243 said:

Domoboro's
I hope your mom is feeling better, even just a bit. I used Domoboro's solution soaked telfa pads a few times a day to the burned areas... this really helped me. I also got the sitz bath kit and when I knew it was time for a BM I would have the bag full of warm water and would run it over my burned buttock skin between cheeks and my perineum (outside of vagina). The entire bag. This was so soothing. I also used Aveeno Oatmeal soaks in the tub ... the first 10 days were the worst. my open areas wept and oozed which was awful. I actually slept on my back with my backside on a pillow with a towel under me ... no panties and my legs frogged and propped on pillows. I also placed a telfa pad between my buttocks to catch some of the serrous fluid. This is just a darn awful time ... but the healing does come pretty quickly. The burning on urination improved first ... and then the BM pain let up a bit, however I used the sitz bag rinse for weeks to keep me clean. I did use narcotics for about 2 weeks straight, around the clock. Use a stool softner. I'm not certain if you said your mom had diarrhea, however, the narcotics WILL cause constipation ... and if you think diarrhea is bad, that is worse. Okay ... hang in there. Now, your mom will need to consider the use of a vaginal dialator pretty soon. If they didn't give her one, her insurance should pay for a good set. Regardless of sexual activity, she will want to keep her vagina open for exams, etc. This is important ... although maybe a touch sensative, however I'll put money on the fact that you have a good relationship with your mom in that you can talk about this.

Be sure to run anything you might do by the radiation oncologist.

Thanks so much, 7243!
Thanks for the advice 7243! We do have the sitz bath kit, but so far we've only been able to actually do it twice. Just the water alone was too much the first time. Yesterday, we were able to go through the entire bag of water. We are planning on trying the sitz bath again tomorrow morning, and will start adding the "extras" if all goes well. We have to go for weekly bloodwork tomorrow morning, too. Did you use the bag from the sitz bath without the actual unit that goes in the toilet? That sounds like it could be very helpful.

The Aveeno Oatmeal sounds like a great idea too. At this point, adding anything beyond water is just too painful for her, but I remember using this in the past when I had poison oak (I know there's no comparison) and it was very relieving even for that.

I'm not sure what a telfa pad is, but she does sleep with a towel under her bottom. It catches most, but there's still so much that comes out that it gets into the sheets (and bed). We're doing laundry at least 3x/day at this point just to keep up.

She's just starting week 2 of the narcotics. Given her history, she's very concerned about the addictive side of taking them, but I just keep trying to reinforce that pain management is crucial. We can worry about weaning off them as time goes on. They haven't caused any constipation up until now...although her treatment is still so recent. I'm assuming that's why. She has gone from 2 to 1 anti-diarrheal pill as of today. So far...so good.

I hate to ask for specifics, but can you further explain the vaginal dialator? She's not even thinking about engaging in sexual activity at this point, but is there some other benefit? Is it just for exams? I'm not worried about paying for anything myself (within reason) at this point if it's going to help.

We definitely have a good relationship...so I'm not worried about bringing anything up. Which is great. As a "caregiver" (I don't like that term) ... it's becoming exhausting because I'm not really sleeping, she is becoming very agitated (if not outright mean) towards me. I know it's nothing personal...and I'm trying my best to be as supportive (and dismissive of the not-so-nice comments) as possible.

They probably can't stand it...but I'm running everything by the rad. onc. and the chemo doctors (relative to her vomiting) whenever there's any type of change. I figure they're the ones making the $$$...so it's their job to educate us and stay up-to-date with any issues.

You're post was great. Thanks so much!
Chris

chrisfromny

law522 said:

Hi Chris
I am from upstate NY too and I am newly diagnosed with this awful awful Cancer
I went in for routine hemmorhoid removal on Oct 3rd
and on Oct 9th I got the "call" that they found cancer cells
I have spent the last 2 weeks worrying and going to appointments
seems all I do is hurry up and wait lately.

I am just beginning my journey and I am very scared.

Any help, guidance or recommendations that you or your mom can give me as I prepare for
this ungodly journey is appreciated ( i did read NOT to drink juice TY for that info)

I hope your Mom is feeling better soon
XO
Linda

Think Positive, Linda!
Hi Linda!

Where about are you in Upstate NY? I'm in Delaware now taking care of my mom, but I live on the outskirts of Troy. I'm not sure if there are private messages here or not, but I'd be happy to talk to you about everything I know and offer any suggestions or support I can! If there's one thing that I've learned about making the entire process easier...it's access to information before you need it. So I'm going to try to tell you as much as I can off the top of my head. If you start reading and get overwhelmed...just stop. It happens and it's ok. If you can come back to this at some point later...great. If you want to talk to me and ask questions one at a time...that's fine too!

Keep in mind I'm not a doctor, and had no experience whatsoever before my mom was diagnosed. I'm happy to share any of our experience with you though. I haven't even shared that I'm posting on this forum with my mom. I don't know if she'd be comfortable, but it definitely brings me some comfort in getting answers from people who are, or have been, in similar situations. I'd highly encourage you to take advantage of this community before, during and after your treatment.

My mom was diagnosed with squamous cell anal cancer after she went to her primary care doctor complaining of bleeding from the rectum. She was referred to a GI doctor for a colonoscopy. The day after her colonoscopy, she got a call referring her to a rectal surgeon and they told her that they found a mass and it was cancerous. The GI doctor who did the colonoscopy initially diagnosed her with rectal cancer (the treatment for which is significantly more invasive and, as she was told, would lead to a permanent colostomy). She/We were confused, upset and didn't know what to do. That was a Thursday.

The following Monday we went to see a rectal surgeon (colorectal surgeon to be more specific) who did a "hands-on" exam. Based on the location of the mass (in both the anus and rectum...although the peak was more towards the anus), he changed the diagnosis to anal cancer. As strange as it sounds, based on my research...I was so happy. Again...I'm no doctor...so please keep that in mind. My mom was hysterical during that visit...and rightfully so. I would highly suggest bringing your partner or a close friend to take notes. You shouldn't have to go through this alone.

Between being told that she had cancer, and visiting the colorectal surgeon, my mom was very adamant that she would do radiation, but was unwilling to have her rectum removed or have any type of chemo. In fact, my wedding was planned for the beginning of December, and she was depressed to the point that she wanted to come to the wedding and then she didn't care (she was more blunt) what happened after. It hurt so much to know (think) that this was her will.

Once we visited the colorectal surgeon, it was an AGONIZING two weeks before we met with the "team" of doctors for a group session about what it was, what the suggested treatment was, and what the possible outcomes were. We went for a CT scan and she had some bloodwork done during this time. That was the "easy" part. It sounds like you might be in that stage right now. Let me assure you that these were the worst two weeks for both my mom and me. The not knowing is worse than the knowing and coming to an understanding about what is going to happen. My only advice is to let go as best you can. There's nothing that can change the diagnosis or what is to come. That was by far the toughest time for us. Lots of tears and emotions.

Two weeks later we met with a team of doctors. I believe it was 6, but it was so overwhelming that I forget the actual number. There was the doctor from the colorectal surgeon, the radiation oncologist, the chemo doctor, a nurse, someone in training, etc. It was a cluster. They did an exam because there was some disagreement as to anal vs. rectal. After the exam, they brought us into what I'd describe as a conference room. Not with a table in the middle, but with chairs/couches around the sides. They explained that they agreed that it was anal, and the suggested treatment plan was 6 weeks of radiation, with chemo given on weeks 1 & 5. They also explained that some people need to pause treatment because of pain or low white blood cell counts. That's totally normal...although thankfully my mom made it through all 6 weeks without interruption.

At that meeting, they scheduled the start of her treatment (I believe it was about a week and a half later they would start). The week before her treatment, she went to the radiation oncologist for a "dry run". They got her up on the table in the position she would be in for treatment, explained possible side effects and so on. Same thing with the chemo doctor. In addition, she had to have another CT scan that was different from her initial CT scan. It was more detailed and provided them with insight on where to direct the radiation. At the radiation oncologist, they tattooed her rear end with 2 or 3 dots so they would always "aim" correctly during treatment. These can and do wash off over time, and she never complained about that being painful.

During the first few weeks of treatment (including the first week of radiation), she had very few side effects. She was tired, but that was about it. The chemo never really seemed to bother her, and she never was sick to her stomach. From what I've read on this forum, it really impacts everyone differently. If you're going through a similar treatment plan, your chemo doctor should prescribe you anti-nausea medicine. TAKE IT as soon as you feel any type of nausea (we learned the hard way during her second week of chemo week 5).

If you haven't gone to your "dry run" for radiation yet...be prepared to stay in a rather uncomfortable position for about 20 minutes. She complained quite a bit for the first few days...but then it became routine and she never complained about the position after that.

For her chemo treatments, she would sit in a room with about a dozen other patients who were receiving chemo (although pretty much everyone was getting different types of meds) on Monday for about 45 minutes. They'd give her one bag of anti-nausea meds...then give her the chemo once that was done. They had snacks and water there in case she was hungry. This was mentally challenging because even though she hasn't lost her hair (it has thinned a little bit...but really not that bad at all) ... she was sitting in a room with a lot of people who had lost it all. It wasn't a physical challenge...but it was most certainly a mental one. Her hair is very important to her.

During the two weeks of chemo (weeks 1 & 5), she had a PICC line put in on Monday morning that was removed mid-day Friday. She never complained about getting it put in, but the process wasn't explained to her so emotionally it took it's toll. Monday morning we'd go for radiation at 7:30am. She'd have an 8:30am appointment to get the PICC line put in. Once it's in...they take an x-ray to make sure it was put in correctly. Following that, we went to the chemo doctor/infusion place for her chemo. After she sat and got her chemo there...she was sent home with a bag (that had a strap that went over her shoulder) for the rest of the week. The annoying part was that she couldn't shower without covering the area where the PICC was (and during the second week...she just decided not to shower at all because of the inconvenience ... which I would actually suggest unless it becomes uncomfortable). The "bag" contained chemo meds that were connected to a battery-powered pump. She got a steady dose of that throughout the week. The pump made noise every minute or so. She was annoyed at first with the noise, but got used to it pretty quickly.

Throughout the entire process, she was having bloodwork done once a week. They were mostly checking on her white blood cell count. She never made that a big deal. We'd go get her bloodwork done on Wednesdays after her radiation. That all went smoothly.

About 3 days after her last radiation treatment (10 days after her last day of chemo), she started to really feel the effects. She's vomited a few times, is extremely exhausted, and has lost most control over her bathroom habits. Again, this totally varies patient to patient based on what I've read here. We use a spray bottle full of warm water to clean after going to the bathroom (urinating or BMs) which seems to be the best solution. She's been given so many topical creams that I can't begin to tell you all of them. The radiation oncologist has basically said (my interpretation) that each person has their own favorite, and it's ok to use whichever one she can tolerate and brings her the most relief.

I really hope that all of this info hasn't scared you. Squamous cell anal cancer has an AMAZING cure rate with chemoradiation alone. If you have any type of cancer...it's been described to me as the "best" one to have. Build your support system now. Unfortunately in my mom's case, she has me...and that's it (for the most part). This would be easier on all of us if there were more people around to help. That said, I've read quite a few stories of people who pretty much went through this on their own...and they came out doing just fine.

Like I said, please feel free to post comments or questions. I check this forum multiple times a day! If there's a way to communicate directly...please do so and we can chat. You shouldn't do this alone...and I'm there for you with whatever you need. You WILL beat this! Anything I can do (and I know other people here can do) ... I will!

XO
Chris

AZANNIE

chrisfromny said:

Thanks so much, 7243!
Thanks for the advice 7243! We do have the sitz bath kit, but so far we've only been able to actually do it twice. Just the water alone was too much the first time. Yesterday, we were able to go through the entire bag of water. We are planning on trying the sitz bath again tomorrow morning, and will start adding the "extras" if all goes well. We have to go for weekly bloodwork tomorrow morning, too. Did you use the bag from the sitz bath without the actual unit that goes in the toilet? That sounds like it could be very helpful.

The Aveeno Oatmeal sounds like a great idea too. At this point, adding anything beyond water is just too painful for her, but I remember using this in the past when I had poison oak (I know there's no comparison) and it was very relieving even for that.

I'm not sure what a telfa pad is, but she does sleep with a towel under her bottom. It catches most, but there's still so much that comes out that it gets into the sheets (and bed). We're doing laundry at least 3x/day at this point just to keep up.

She's just starting week 2 of the narcotics. Given her history, she's very concerned about the addictive side of taking them, but I just keep trying to reinforce that pain management is crucial. We can worry about weaning off them as time goes on. They haven't caused any constipation up until now...although her treatment is still so recent. I'm assuming that's why. She has gone from 2 to 1 anti-diarrheal pill as of today. So far...so good.

I hate to ask for specifics, but can you further explain the vaginal dialator? She's not even thinking about engaging in sexual activity at this point, but is there some other benefit? Is it just for exams? I'm not worried about paying for anything myself (within reason) at this point if it's going to help.

We definitely have a good relationship...so I'm not worried about bringing anything up. Which is great. As a "caregiver" (I don't like that term) ... it's becoming exhausting because I'm not really sleeping, she is becoming very agitated (if not outright mean) towards me. I know it's nothing personal...and I'm trying my best to be as supportive (and dismissive of the not-so-nice comments) as possible.

They probably can't stand it...but I'm running everything by the rad. onc. and the chemo doctors (relative to her vomiting) whenever there's any type of change. I figure they're the ones making the $$$...so it's their job to educate us and stay up-to-date with any issues.

You're post was great. Thanks so much!
Chris

Chris
For awhile I used disposable bed pads on the bed which helped. I think I bought them at Target. As far as the sitz bath I just filled it with water (didn't use the bag) and sat in it, but I realize that may not be comfortable for your Mom yet.
Yes, keep the drs. up to date on any changes.
Is there anyone else who can help so you can get some rest?
Wishing your Mom a speedy recovery!

Ann

mp327

chrisfromny said:

Thanks so much, 7243!
Thanks for the advice 7243! We do have the sitz bath kit, but so far we've only been able to actually do it twice. Just the water alone was too much the first time. Yesterday, we were able to go through the entire bag of water. We are planning on trying the sitz bath again tomorrow morning, and will start adding the "extras" if all goes well. We have to go for weekly bloodwork tomorrow morning, too. Did you use the bag from the sitz bath without the actual unit that goes in the toilet? That sounds like it could be very helpful.

The Aveeno Oatmeal sounds like a great idea too. At this point, adding anything beyond water is just too painful for her, but I remember using this in the past when I had poison oak (I know there's no comparison) and it was very relieving even for that.

I'm not sure what a telfa pad is, but she does sleep with a towel under her bottom. It catches most, but there's still so much that comes out that it gets into the sheets (and bed). We're doing laundry at least 3x/day at this point just to keep up.

She's just starting week 2 of the narcotics. Given her history, she's very concerned about the addictive side of taking them, but I just keep trying to reinforce that pain management is crucial. We can worry about weaning off them as time goes on. They haven't caused any constipation up until now...although her treatment is still so recent. I'm assuming that's why. She has gone from 2 to 1 anti-diarrheal pill as of today. So far...so good.

I hate to ask for specifics, but can you further explain the vaginal dialator? She's not even thinking about engaging in sexual activity at this point, but is there some other benefit? Is it just for exams? I'm not worried about paying for anything myself (within reason) at this point if it's going to help.

We definitely have a good relationship...so I'm not worried about bringing anything up. Which is great. As a "caregiver" (I don't like that term) ... it's becoming exhausting because I'm not really sleeping, she is becoming very agitated (if not outright mean) towards me. I know it's nothing personal...and I'm trying my best to be as supportive (and dismissive of the not-so-nice comments) as possible.

They probably can't stand it...but I'm running everything by the rad. onc. and the chemo doctors (relative to her vomiting) whenever there's any type of change. I figure they're the ones making the $$$...so it's their job to educate us and stay up-to-date with any issues.

You're post was great. Thanks so much!
Chris

Hi Chris--
I think it's wonderful that you are being such a great advocate for your mom. Bringing up everything with her doctors is the thing to do, whether they like it or not. It's their jobs to help you keep your mom comfortable.

As for the dilator, it is important for her to get one and begin using it as soon as it is not painful. Of course, it is important to keep the vaginal canal open for the purpose of having sex, but even if that's not an issue, your mom is going to need regular paps and pelvic exams, so it's important not to let vaginal stenosis close up the canal. My rad onc gave me my first one. Perhaps you can ask her rad onc if they give them to patients after pelvic radiation.

From your post, it sounds like your mom is making some small steps forward in her recovery. Like I may have said before, she will probably completely turn the corner one day and things will be so much better. As for her agitation, she is in pain and has been for some time. I don't believe she is lashing out at you as much as she is the pain. Unfortunately, you are the one who is there to receive it. I'm sure once she begins to feel better, that will end. You are such a good son to be taking such good care of her. She knows that and doesn't mean to hurt you. Sometimes the person watching over the patient has to just hang in there too. Things will be better soon!

God bless you for caring for your mom in such a loving way.

chrisfromny

AZANNIE said:

Chris
For awhile I used disposable bed pads on the bed which helped. I think I bought them at Target. As far as the sitz bath I just filled it with water (didn't use the bag) and sat in it, but I realize that may not be comfortable for your Mom yet.
Yes, keep the drs. up to date on any changes.
Is there anyone else who can help so you can get some rest?
Wishing your Mom a speedy recovery!

Ann

Thanks Ann!
She's very much against the disposable bed pads. I'm not sure why...but I think that's psychological more than anything. She's very much at a point right now where she's "only 50" (well...now 51) and this shouldn't be happening.

My Dad (they are divorced) offered to pay for a visiting nurse for a couple days so I could get some rest. I declined his offer for now ... hoping that in a few more days she'll finally start to feel just the slightest bit better. I really think that's what she needs to boost her spirits right now. If that happens, I think I'll feel a lot better, too ... and then can rest. If I went somewhere else to get rest while a nurse was here...I don't think I'd be able to. My mind would just race.

Thanks for the wishes!
Chris

chrisfromny

mp327 said:

Hi Chris--
I think it's wonderful that you are being such a great advocate for your mom. Bringing up everything with her doctors is the thing to do, whether they like it or not. It's their jobs to help you keep your mom comfortable.

As for the dilator, it is important for her to get one and begin using it as soon as it is not painful. Of course, it is important to keep the vaginal canal open for the purpose of having sex, but even if that's not an issue, your mom is going to need regular paps and pelvic exams, so it's important not to let vaginal stenosis close up the canal. My rad onc gave me my first one. Perhaps you can ask her rad onc if they give them to patients after pelvic radiation.

From your post, it sounds like your mom is making some small steps forward in her recovery. Like I may have said before, she will probably completely turn the corner one day and things will be so much better. As for her agitation, she is in pain and has been for some time. I don't believe she is lashing out at you as much as she is the pain. Unfortunately, you are the one who is there to receive it. I'm sure once she begins to feel better, that will end. You are such a good son to be taking such good care of her. She knows that and doesn't mean to hurt you. Sometimes the person watching over the patient has to just hang in there too. Things will be better soon!

God bless you for caring for your mom in such a loving way.

Hanging in there!
Thanks, mp327! I'm definitely hanging in there

I will definitely bring up the dilator with the rad onc. So far no one has even mentioned this to us. My mom's first f/u appt with the rad onc is about 4 weeks away. Should I wait until then, or is this something that should really be started before then?

I'm not taking it personally...but it's still tough to hear. I'll be fine though Once step at a time!

Thanks so much!!!
Chris

mp327

chrisfromny said:

Hanging in there!
Thanks, mp327! I'm definitely hanging in there

I will definitely bring up the dilator with the rad onc. So far no one has even mentioned this to us. My mom's first f/u appt with the rad onc is about 4 weeks away. Should I wait until then, or is this something that should really be started before then?

I'm not taking it personally...but it's still tough to hear. I'll be fine though Once step at a time!

Thanks so much!!!
Chris

Chris--
I would suggest talking to the rad onc's nurse about the dilator now, so that perhaps your mom could have it when she feels ready to begin using it and not wait. The sooner she can begin using it, the better. My rad onc gave me mine on the day of my last treatment.

mp327

chrisfromny said:

Think Positive, Linda!
Hi Linda!

Where about are you in Upstate NY? I'm in Delaware now taking care of my mom, but I live on the outskirts of Troy. I'm not sure if there are private messages here or not, but I'd be happy to talk to you about everything I know and offer any suggestions or support I can! If there's one thing that I've learned about making the entire process easier...it's access to information before you need it. So I'm going to try to tell you as much as I can off the top of my head. If you start reading and get overwhelmed...just stop. It happens and it's ok. If you can come back to this at some point later...great. If you want to talk to me and ask questions one at a time...that's fine too!

Keep in mind I'm not a doctor, and had no experience whatsoever before my mom was diagnosed. I'm happy to share any of our experience with you though. I haven't even shared that I'm posting on this forum with my mom. I don't know if she'd be comfortable, but it definitely brings me some comfort in getting answers from people who are, or have been, in similar situations. I'd highly encourage you to take advantage of this community before, during and after your treatment.

My mom was diagnosed with squamous cell anal cancer after she went to her primary care doctor complaining of bleeding from the rectum. She was referred to a GI doctor for a colonoscopy. The day after her colonoscopy, she got a call referring her to a rectal surgeon and they told her that they found a mass and it was cancerous. The GI doctor who did the colonoscopy initially diagnosed her with rectal cancer (the treatment for which is significantly more invasive and, as she was told, would lead to a permanent colostomy). She/We were confused, upset and didn't know what to do. That was a Thursday.

The following Monday we went to see a rectal surgeon (colorectal surgeon to be more specific) who did a "hands-on" exam. Based on the location of the mass (in both the anus and rectum...although the peak was more towards the anus), he changed the diagnosis to anal cancer. As strange as it sounds, based on my research...I was so happy. Again...I'm no doctor...so please keep that in mind. My mom was hysterical during that visit...and rightfully so. I would highly suggest bringing your partner or a close friend to take notes. You shouldn't have to go through this alone.

Between being told that she had cancer, and visiting the colorectal surgeon, my mom was very adamant that she would do radiation, but was unwilling to have her rectum removed or have any type of chemo. In fact, my wedding was planned for the beginning of December, and she was depressed to the point that she wanted to come to the wedding and then she didn't care (she was more blunt) what happened after. It hurt so much to know (think) that this was her will.

Once we visited the colorectal surgeon, it was an AGONIZING two weeks before we met with the "team" of doctors for a group session about what it was, what the suggested treatment was, and what the possible outcomes were. We went for a CT scan and she had some bloodwork done during this time. That was the "easy" part. It sounds like you might be in that stage right now. Let me assure you that these were the worst two weeks for both my mom and me. The not knowing is worse than the knowing and coming to an understanding about what is going to happen. My only advice is to let go as best you can. There's nothing that can change the diagnosis or what is to come. That was by far the toughest time for us. Lots of tears and emotions.

Two weeks later we met with a team of doctors. I believe it was 6, but it was so overwhelming that I forget the actual number. There was the doctor from the colorectal surgeon, the radiation oncologist, the chemo doctor, a nurse, someone in training, etc. It was a cluster. They did an exam because there was some disagreement as to anal vs. rectal. After the exam, they brought us into what I'd describe as a conference room. Not with a table in the middle, but with chairs/couches around the sides. They explained that they agreed that it was anal, and the suggested treatment plan was 6 weeks of radiation, with chemo given on weeks 1 & 5. They also explained that some people need to pause treatment because of pain or low white blood cell counts. That's totally normal...although thankfully my mom made it through all 6 weeks without interruption.

At that meeting, they scheduled the start of her treatment (I believe it was about a week and a half later they would start). The week before her treatment, she went to the radiation oncologist for a "dry run". They got her up on the table in the position she would be in for treatment, explained possible side effects and so on. Same thing with the chemo doctor. In addition, she had to have another CT scan that was different from her initial CT scan. It was more detailed and provided them with insight on where to direct the radiation. At the radiation oncologist, they tattooed her rear end with 2 or 3 dots so they would always "aim" correctly during treatment. These can and do wash off over time, and she never complained about that being painful.

During the first few weeks of treatment (including the first week of radiation), she had very few side effects. She was tired, but that was about it. The chemo never really seemed to bother her, and she never was sick to her stomach. From what I've read on this forum, it really impacts everyone differently. If you're going through a similar treatment plan, your chemo doctor should prescribe you anti-nausea medicine. TAKE IT as soon as you feel any type of nausea (we learned the hard way during her second week of chemo week 5).

If you haven't gone to your "dry run" for radiation yet...be prepared to stay in a rather uncomfortable position for about 20 minutes. She complained quite a bit for the first few days...but then it became routine and she never complained about the position after that.

For her chemo treatments, she would sit in a room with about a dozen other patients who were receiving chemo (although pretty much everyone was getting different types of meds) on Monday for about 45 minutes. They'd give her one bag of anti-nausea meds...then give her the chemo once that was done. They had snacks and water there in case she was hungry. This was mentally challenging because even though she hasn't lost her hair (it has thinned a little bit...but really not that bad at all) ... she was sitting in a room with a lot of people who had lost it all. It wasn't a physical challenge...but it was most certainly a mental one. Her hair is very important to her.

During the two weeks of chemo (weeks 1 & 5), she had a PICC line put in on Monday morning that was removed mid-day Friday. She never complained about getting it put in, but the process wasn't explained to her so emotionally it took it's toll. Monday morning we'd go for radiation at 7:30am. She'd have an 8:30am appointment to get the PICC line put in. Once it's in...they take an x-ray to make sure it was put in correctly. Following that, we went to the chemo doctor/infusion place for her chemo. After she sat and got her chemo there...she was sent home with a bag (that had a strap that went over her shoulder) for the rest of the week. The annoying part was that she couldn't shower without covering the area where the PICC was (and during the second week...she just decided not to shower at all because of the inconvenience ... which I would actually suggest unless it becomes uncomfortable). The "bag" contained chemo meds that were connected to a battery-powered pump. She got a steady dose of that throughout the week. The pump made noise every minute or so. She was annoyed at first with the noise, but got used to it pretty quickly.

Throughout the entire process, she was having bloodwork done once a week. They were mostly checking on her white blood cell count. She never made that a big deal. We'd go get her bloodwork done on Wednesdays after her radiation. That all went smoothly.

About 3 days after her last radiation treatment (10 days after her last day of chemo), she started to really feel the effects. She's vomited a few times, is extremely exhausted, and has lost most control over her bathroom habits. Again, this totally varies patient to patient based on what I've read here. We use a spray bottle full of warm water to clean after going to the bathroom (urinating or BMs) which seems to be the best solution. She's been given so many topical creams that I can't begin to tell you all of them. The radiation oncologist has basically said (my interpretation) that each person has their own favorite, and it's ok to use whichever one she can tolerate and brings her the most relief.

I really hope that all of this info hasn't scared you. Squamous cell anal cancer has an AMAZING cure rate with chemoradiation alone. If you have any type of cancer...it's been described to me as the "best" one to have. Build your support system now. Unfortunately in my mom's case, she has me...and that's it (for the most part). This would be easier on all of us if there were more people around to help. That said, I've read quite a few stories of people who pretty much went through this on their own...and they came out doing just fine.

Like I said, please feel free to post comments or questions. I check this forum multiple times a day! If there's a way to communicate directly...please do so and we can chat. You shouldn't do this alone...and I'm there for you with whatever you need. You WILL beat this! Anything I can do (and I know other people here can do) ... I will!

XO
Chris

Chris
Thank you so much for posting the above comments. I realize you were directing them to Linda, but they will be very helpful for any other newbies who come to this site. You have laid it all out as to what can be expected. It would be hard for me, after 4 years, to go back and give as much detail as you have! Thanks!

7243

chrisfromny said:

Thanks so much, 7243!
Thanks for the advice 7243! We do have the sitz bath kit, but so far we've only been able to actually do it twice. Just the water alone was too much the first time. Yesterday, we were able to go through the entire bag of water. We are planning on trying the sitz bath again tomorrow morning, and will start adding the "extras" if all goes well. We have to go for weekly bloodwork tomorrow morning, too. Did you use the bag from the sitz bath without the actual unit that goes in the toilet? That sounds like it could be very helpful.

The Aveeno Oatmeal sounds like a great idea too. At this point, adding anything beyond water is just too painful for her, but I remember using this in the past when I had poison oak (I know there's no comparison) and it was very relieving even for that.

I'm not sure what a telfa pad is, but she does sleep with a towel under her bottom. It catches most, but there's still so much that comes out that it gets into the sheets (and bed). We're doing laundry at least 3x/day at this point just to keep up.

She's just starting week 2 of the narcotics. Given her history, she's very concerned about the addictive side of taking them, but I just keep trying to reinforce that pain management is crucial. We can worry about weaning off them as time goes on. They haven't caused any constipation up until now...although her treatment is still so recent. I'm assuming that's why. She has gone from 2 to 1 anti-diarrheal pill as of today. So far...so good.

I hate to ask for specifics, but can you further explain the vaginal dialator? She's not even thinking about engaging in sexual activity at this point, but is there some other benefit? Is it just for exams? I'm not worried about paying for anything myself (within reason) at this point if it's going to help.

We definitely have a good relationship...so I'm not worried about bringing anything up. Which is great. As a "caregiver" (I don't like that term) ... it's becoming exhausting because I'm not really sleeping, she is becoming very agitated (if not outright mean) towards me. I know it's nothing personal...and I'm trying my best to be as supportive (and dismissive of the not-so-nice comments) as possible.

They probably can't stand it...but I'm running everything by the rad. onc. and the chemo doctors (relative to her vomiting) whenever there's any type of change. I figure they're the ones making the $$$...so it's their job to educate us and stay up-to-date with any issues.

You're post was great. Thanks so much!
Chris

More info ....
You're welcome for the information.

Dilators: There are graduated sets of vaginal dilators that are made of nice soft rubber/plastic material. Work with the rad onc (and yes do ask questions of them ALL the time). In time your mom will be able to work with the dialtors. The oncologist will recommend a program i.e., insert dilator and let it me there for 10 minutes at first working up to longer periods of time and larger dilators. Our vaginas can really take a hit from that radiation. My insurance covered my full set. However, there are sites on the internet with these. There are gals who have to use these due to menopause and the loss of vaginal moisture, so we're at a real deficit given the radiation and menopause. Not sure your Mom's age ... nonetheless work with the radiation oncologist. And the dilators will keep the vagina open for exams and keep the vaginal tissue healthy .... sex aside.

I did not use the basin with the sitz thing ... not once. I went directly from toilet after using the full bag with the little nozzle thing, to a warm, full bath and sat in there until I wanted to get out (using Aveeno Oatmeal bath). I would pat myself dry, use the domboro's telfa pads while laying naked on the bed ... then I would take them off and dress for the day or redress.

As for caretaker ... yes you are. And all of this sounds very normal; anger, fear and directed toward you. Put on your thick skin as she doesn't mean this toward you ... it is toward the cancer, the pain, etc. I was the same toward my husband ... I wanted someone to "fix" it and take it all away. And I was sort of pissed that is was me .... and so on. You must get exercise and feed yourself well. Meditate or use guided imagery??? Talk to your God. When she's resting ... so should you. Or go do what you love; a cup of coffee in the beautiful sun and fall leaves. A walk, anything to care for you! Cry if you need to.

She will not get addicted to the narcotics given the short period of time. Pain control is the most important thing as pain decreases our ability to heal and also can decrease our immune system ... must do the meds and do not hold back. If she can't sleep ... ask for Ambien. And if she has anxiety and or Panic attacks ... Zanax is good. These are all tools for healing right now. All temporary until she can manage her emotions again. I was leary of all this too, however it is very necessary ... but, these are personal choices and this is MY opinion having been there. Ambien gives about 5 hours of sleep ... so best maybe to take it when she wakes or if she wakes at midnight let's say after initially falling asleep on her own to to fatigue. I could go to sleep on my own, but would wake up in pain and racing thoughts. I took ambien and narcotics no problem.

Telfa is like the little pad on a bandaid ... it has a mesh covering that does not stick to the wounds. You can buy them at any pharmacy ... like 6 by 4 sheets. Put a plastic sheeting or "chux" (see pharmacy) between the towel and pillow and or sheets to catch the fluid.

I had a few "accidents" as I healed and felt so humiliated. Be prepared and encourge her is is normal and will pass.

I hope I addressed your questions ... I will check on you in a few hours.

Take care of yourself too ... is there a cancer support group for care-givers in your area? Ask the radiation oncologist or nurses. There must be. check one out ... you need to know you're not along. That being said ... support groups are not for everyone. xoxoxo

law522

chrisfromny said:

Think Positive, Linda!
Hi Linda!

Where about are you in Upstate NY? I'm in Delaware now taking care of my mom, but I live on the outskirts of Troy. I'm not sure if there are private messages here or not, but I'd be happy to talk to you about everything I know and offer any suggestions or support I can! If there's one thing that I've learned about making the entire process easier...it's access to information before you need it. So I'm going to try to tell you as much as I can off the top of my head. If you start reading and get overwhelmed...just stop. It happens and it's ok. If you can come back to this at some point later...great. If you want to talk to me and ask questions one at a time...that's fine too!

Keep in mind I'm not a doctor, and had no experience whatsoever before my mom was diagnosed. I'm happy to share any of our experience with you though. I haven't even shared that I'm posting on this forum with my mom. I don't know if she'd be comfortable, but it definitely brings me some comfort in getting answers from people who are, or have been, in similar situations. I'd highly encourage you to take advantage of this community before, during and after your treatment.

My mom was diagnosed with squamous cell anal cancer after she went to her primary care doctor complaining of bleeding from the rectum. She was referred to a GI doctor for a colonoscopy. The day after her colonoscopy, she got a call referring her to a rectal surgeon and they told her that they found a mass and it was cancerous. The GI doctor who did the colonoscopy initially diagnosed her with rectal cancer (the treatment for which is significantly more invasive and, as she was told, would lead to a permanent colostomy). She/We were confused, upset and didn't know what to do. That was a Thursday.

The following Monday we went to see a rectal surgeon (colorectal surgeon to be more specific) who did a "hands-on" exam. Based on the location of the mass (in both the anus and rectum...although the peak was more towards the anus), he changed the diagnosis to anal cancer. As strange as it sounds, based on my research...I was so happy. Again...I'm no doctor...so please keep that in mind. My mom was hysterical during that visit...and rightfully so. I would highly suggest bringing your partner or a close friend to take notes. You shouldn't have to go through this alone.

Between being told that she had cancer, and visiting the colorectal surgeon, my mom was very adamant that she would do radiation, but was unwilling to have her rectum removed or have any type of chemo. In fact, my wedding was planned for the beginning of December, and she was depressed to the point that she wanted to come to the wedding and then she didn't care (she was more blunt) what happened after. It hurt so much to know (think) that this was her will.

Once we visited the colorectal surgeon, it was an AGONIZING two weeks before we met with the "team" of doctors for a group session about what it was, what the suggested treatment was, and what the possible outcomes were. We went for a CT scan and she had some bloodwork done during this time. That was the "easy" part. It sounds like you might be in that stage right now. Let me assure you that these were the worst two weeks for both my mom and me. The not knowing is worse than the knowing and coming to an understanding about what is going to happen. My only advice is to let go as best you can. There's nothing that can change the diagnosis or what is to come. That was by far the toughest time for us. Lots of tears and emotions.

Two weeks later we met with a team of doctors. I believe it was 6, but it was so overwhelming that I forget the actual number. There was the doctor from the colorectal surgeon, the radiation oncologist, the chemo doctor, a nurse, someone in training, etc. It was a cluster. They did an exam because there was some disagreement as to anal vs. rectal. After the exam, they brought us into what I'd describe as a conference room. Not with a table in the middle, but with chairs/couches around the sides. They explained that they agreed that it was anal, and the suggested treatment plan was 6 weeks of radiation, with chemo given on weeks 1 & 5. They also explained that some people need to pause treatment because of pain or low white blood cell counts. That's totally normal...although thankfully my mom made it through all 6 weeks without interruption.

At that meeting, they scheduled the start of her treatment (I believe it was about a week and a half later they would start). The week before her treatment, she went to the radiation oncologist for a "dry run". They got her up on the table in the position she would be in for treatment, explained possible side effects and so on. Same thing with the chemo doctor. In addition, she had to have another CT scan that was different from her initial CT scan. It was more detailed and provided them with insight on where to direct the radiation. At the radiation oncologist, they tattooed her rear end with 2 or 3 dots so they would always "aim" correctly during treatment. These can and do wash off over time, and she never complained about that being painful.

During the first few weeks of treatment (including the first week of radiation), she had very few side effects. She was tired, but that was about it. The chemo never really seemed to bother her, and she never was sick to her stomach. From what I've read on this forum, it really impacts everyone differently. If you're going through a similar treatment plan, your chemo doctor should prescribe you anti-nausea medicine. TAKE IT as soon as you feel any type of nausea (we learned the hard way during her second week of chemo week 5).

If you haven't gone to your "dry run" for radiation yet...be prepared to stay in a rather uncomfortable position for about 20 minutes. She complained quite a bit for the first few days...but then it became routine and she never complained about the position after that.

For her chemo treatments, she would sit in a room with about a dozen other patients who were receiving chemo (although pretty much everyone was getting different types of meds) on Monday for about 45 minutes. They'd give her one bag of anti-nausea meds...then give her the chemo once that was done. They had snacks and water there in case she was hungry. This was mentally challenging because even though she hasn't lost her hair (it has thinned a little bit...but really not that bad at all) ... she was sitting in a room with a lot of people who had lost it all. It wasn't a physical challenge...but it was most certainly a mental one. Her hair is very important to her.

During the two weeks of chemo (weeks 1 & 5), she had a PICC line put in on Monday morning that was removed mid-day Friday. She never complained about getting it put in, but the process wasn't explained to her so emotionally it took it's toll. Monday morning we'd go for radiation at 7:30am. She'd have an 8:30am appointment to get the PICC line put in. Once it's in...they take an x-ray to make sure it was put in correctly. Following that, we went to the chemo doctor/infusion place for her chemo. After she sat and got her chemo there...she was sent home with a bag (that had a strap that went over her shoulder) for the rest of the week. The annoying part was that she couldn't shower without covering the area where the PICC was (and during the second week...she just decided not to shower at all because of the inconvenience ... which I would actually suggest unless it becomes uncomfortable). The "bag" contained chemo meds that were connected to a battery-powered pump. She got a steady dose of that throughout the week. The pump made noise every minute or so. She was annoyed at first with the noise, but got used to it pretty quickly.

Throughout the entire process, she was having bloodwork done once a week. They were mostly checking on her white blood cell count. She never made that a big deal. We'd go get her bloodwork done on Wednesdays after her radiation. That all went smoothly.

About 3 days after her last radiation treatment (10 days after her last day of chemo), she started to really feel the effects. She's vomited a few times, is extremely exhausted, and has lost most control over her bathroom habits. Again, this totally varies patient to patient based on what I've read here. We use a spray bottle full of warm water to clean after going to the bathroom (urinating or BMs) which seems to be the best solution. She's been given so many topical creams that I can't begin to tell you all of them. The radiation oncologist has basically said (my interpretation) that each person has their own favorite, and it's ok to use whichever one she can tolerate and brings her the most relief.

I really hope that all of this info hasn't scared you. Squamous cell anal cancer has an AMAZING cure rate with chemoradiation alone. If you have any type of cancer...it's been described to me as the "best" one to have. Build your support system now. Unfortunately in my mom's case, she has me...and that's it (for the most part). This would be easier on all of us if there were more people around to help. That said, I've read quite a few stories of people who pretty much went through this on their own...and they came out doing just fine.

Like I said, please feel free to post comments or questions. I check this forum multiple times a day! If there's a way to communicate directly...please do so and we can chat. You shouldn't do this alone...and I'm there for you with whatever you need. You WILL beat this! Anything I can do (and I know other people here can do) ... I will!

XO
Chris

TY Chris
TY so much for the information and taking the time to let me know what to expect. This message board and ALL the members have made this bareable as compared to the hole I crawled in when 1st finding out about this--before I told my husband--you all were here for me.Every bit of information I get to prepare for this gets me one step closer to getting well again (although I had no idea I was sick until 2 weeks ago is kinda crazy in a way) I hope your Mom is feeling better as every minute passses. I have husband at home with me and youngest son at college just 1/2 hr away older son, Daughter in law and granddaughter just 1/2 mile away--I have my support group in place and actually they are the only ones that know of this right now--I am not ready to tell the rest of the family just yet--looks like the timing for my treatment is going to suck, but will find out more tomorrow when I see chemo Dr.
thoughts and best wishes for you and your mom
XO Linda

chrisfromny

mp327 said:

Chris--
I would suggest talking to the rad onc's nurse about the dilator now, so that perhaps your mom could have it when she feels ready to begin using it and not wait. The sooner she can begin using it, the better. My rad onc gave me mine on the day of my last treatment.

Dilator
Thanks, mp327! I will give them a call tomorrow and see what they say. This is exactly what frustrates me about her rad onc. They never are forthcoming with info...always have to ask!

Thanks again,
Chris

chrisfromny

7243 said:

More info ....
You're welcome for the information.

Dilators: There are graduated sets of vaginal dilators that are made of nice soft rubber/plastic material. Work with the rad onc (and yes do ask questions of them ALL the time). In time your mom will be able to work with the dialtors. The oncologist will recommend a program i.e., insert dilator and let it me there for 10 minutes at first working up to longer periods of time and larger dilators. Our vaginas can really take a hit from that radiation. My insurance covered my full set. However, there are sites on the internet with these. There are gals who have to use these due to menopause and the loss of vaginal moisture, so we're at a real deficit given the radiation and menopause. Not sure your Mom's age ... nonetheless work with the radiation oncologist. And the dilators will keep the vagina open for exams and keep the vaginal tissue healthy .... sex aside.

I did not use the basin with the sitz thing ... not once. I went directly from toilet after using the full bag with the little nozzle thing, to a warm, full bath and sat in there until I wanted to get out (using Aveeno Oatmeal bath). I would pat myself dry, use the domboro's telfa pads while laying naked on the bed ... then I would take them off and dress for the day or redress.

As for caretaker ... yes you are. And all of this sounds very normal; anger, fear and directed toward you. Put on your thick skin as she doesn't mean this toward you ... it is toward the cancer, the pain, etc. I was the same toward my husband ... I wanted someone to "fix" it and take it all away. And I was sort of pissed that is was me .... and so on. You must get exercise and feed yourself well. Meditate or use guided imagery??? Talk to your God. When she's resting ... so should you. Or go do what you love; a cup of coffee in the beautiful sun and fall leaves. A walk, anything to care for you! Cry if you need to.

She will not get addicted to the narcotics given the short period of time. Pain control is the most important thing as pain decreases our ability to heal and also can decrease our immune system ... must do the meds and do not hold back. If she can't sleep ... ask for Ambien. And if she has anxiety and or Panic attacks ... Zanax is good. These are all tools for healing right now. All temporary until she can manage her emotions again. I was leary of all this too, however it is very necessary ... but, these are personal choices and this is MY opinion having been there. Ambien gives about 5 hours of sleep ... so best maybe to take it when she wakes or if she wakes at midnight let's say after initially falling asleep on her own to to fatigue. I could go to sleep on my own, but would wake up in pain and racing thoughts. I took ambien and narcotics no problem.

Telfa is like the little pad on a bandaid ... it has a mesh covering that does not stick to the wounds. You can buy them at any pharmacy ... like 6 by 4 sheets. Put a plastic sheeting or "chux" (see pharmacy) between the towel and pillow and or sheets to catch the fluid.

I had a few "accidents" as I healed and felt so humiliated. Be prepared and encourge her is is normal and will pass.

I hope I addressed your questions ... I will check on you in a few hours.

Take care of yourself too ... is there a cancer support group for care-givers in your area? Ask the radiation oncologist or nurses. There must be. check one out ... you need to know you're not along. That being said ... support groups are not for everyone. xoxoxo

Thanks for the awesome response, 7243!
Thanks so much for the detailed reply! I'll try to touch on each of the points, but please forgive me if I miss something. It's been a crazy day today.

I am calling the rad. onc. about the dilator tomorrow. We'll see what they say...and try to see if her insurance company will cover it. If not, we'll probably order a set from Amazon.

I brought up the Aveeno bath, but she's against it until we talk to the rad. onc. about it. I'm going to bring that up tomorrow, too. The sitz bath that goes over the toilet isn't very effective. I say that because she's hurting in the front and back. With the toilet version, she can't soak the entire area that's affected...so we've been doing the bath trick too

My thick skin is on. I'm not taking it personally. Although I must say that having this forum as a place to discuss my feelings as a caretaker is absolutely awesome. The last point you made was for support groups. I'm really not that type of person. They do have them in the area. I did do a quick search. If I come to a point where I think I'm going to go crazy...then I'll use that as a last resort.

We went to see the chemo doc. today because I called saying she had a fever again (99.8) this morning. They wanted to see her so we went in. When the nurse practitioner looked at the radiation area, she stated that she hadn't ever seen it that bad. Not a great thing to say, but I brought up (multiple times) that we need to do something else for pain management because the percoset (prescribed by the rad. onc.) wasn't enough. They've added Oxycontin and offered as many refills for the percoset as we need. So at least we're finally get some support on the pain management side.

She was prescribed xanax by her primary care physician when all of this started...but it doesn't do a darn thing. Doesn't take the edge off when she gets worked up or anything (at least it didn't at the start of this whole process). The chemo doc. said to give the Oxycontin a full 18 hours from when she starts taking it to have a full effect. She took the first pill about an hour ago (we didn't want to have to wake up intentionally at 3am to take it).

In addition to the xanax, her family doctor did prescribe her restoril for sleeping. She didn't like prescribing ambien for some reason or another. Quite honestly I don't really remember why. Again, those don't help. I'm on the fence about bringing up sleeping pills because I can envision her taking a sleeping pill, having an accident, and laying in the mess because she doesn't wake up. Maybe I'm just being too afraid? The restoril will keep her asleep for a couple hours tops...then it seems to just wear off. Any thoughts on the ambien and accidents?

In terms of the accidents, they've been fairly regular now since week 4. She's been very gassy...and I really think she believes she's just going to pass some gas...but ends up having an accident. For the most part, they are very small in terms of output, but there have been occasions where it's quite a bit more. Despite the pain, she still dreams big, and makes plans to go to stores and do other things. When it comes time, she always says she can't do it. I've gotten to a point now where (without telling her to not dream of going to the store), I try to nip those things in the bud. We can't seem to make it more than an hour or so (unless she's sleeping...which is only an hour or two at a time) without needed the bathroom.

Thanks so much for all of your input! It's invaluable to me...my mom...and hopefully those in the future who are handed this terrible set of cards. Bottom line...we'll make it through...and the chances for a successful and cancer-free outcome are very good!

Thanks so much!
Chris