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

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.

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

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

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