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

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Update as of 10/27
Hello everyone! I wanted to provide a quick update as to how things are progressing here. My mom took her first dose of oxycontin on the night of 10/25 (2 nights ago). Since then, we've seen a tremendous improvement in terms of her pain. She was up and around so much yesterday that I had to tell her several times to go lay down. She was clearly excited to be able to move around...but I didn't want her overdoing it. By around 3pm in the afternoon...her energy was pretty much gone. She stayed in bed for the rest of the night with the exception of a bit of energy around 9pm. Let's just say that it was the most exciting thing that's happened since her treatment ended.

She did vomit yesterday around 3pm...which happened to be about 30 minutes after she took her new antibiotic. She also vomited the day before at roughly the same time. We're going to try one more time today with this new antibiotic and see if she gets sick again. Nausea is listed as a side effect, but with all the other medication she's on...we don't feel like we know what's causing it. Aside from that one episode of vomiting, she's been able to keep all her pills down.

I was sleeping and she didn't wake me up when this happened, but this morning she said that in the middle of the night she woke up and couldn't get back to sleep so she turned on the TV. She said that she couldn't see the TV at all (it's very close to her bed)...and that it was all blurry. My first thought was the oxycontin since that's a new powerful addition to her mix of meds. It does say that blurred vision can be a side effect. She didn't know how long it lasted, but she wiped her eyes with a wet washcloth and after some point...she could see clearly again. She made it sound like maybe a half hour or so went by before she could see (but she couldn't see the clock to track time). I'm not sure why she didn't wake me up.

Has anyone else experienced similar side effects from oxycontin?

Along the same lines, she has not had a BM since she starting taking the oxycontin. I'm starting to get very worried about this, because I can't imagine how painful it's going to be when she finally does. The doctor had her stop (and we did) the anti-diarrhea medicine before starting the oxycontin.

Is there a point in time when we should consider doing something about the no-BM issue? We have no way of contacting the doctors again until Monday.

Finally...the storm (hurricane) Sandy is a comin'. We are in New Castle County, Delaware...and it looks like we're going to get a ton of rain and some decent winds. I'm putting all the patio furniture in the garage today...but we're in a condo complex so there's not really too much we need to do to get ready. We have a couple cases of bottled water, and I'm going to go to the grocery store today to try to find things that she can eat that don't need to be cooked. We do have a small gas grill...so if we do lose power (electric range) ... at least I can try to cook on that. Should be interesting. We received an automated call from the electric company and also have been following the news where they say that prolonged power outages are to be expected. I think it's mostly hype...but I'd rather be prepared.

Does anyone have any suggestions on "snack" or other foods that she can eat that don't need to be cooked (or stored in the refrigerator)? We have saltines and bread...that's about it right now.

Thanks so much!
Chris

---------------------------------

Update as of 10/25
I wanted to provide a quick update as to what's happened over the past couple of days for all the awesome supporters here. The past couple days have been quite a struggle. My mom is vomiting at least a few times a day. This morning, she had a temperature of 99.8. I called the chemo doc. and they wanted to see her. We were waiting to get bloodwork done until we talked to them, so luckily we were able to go to the hospital to get bloodwork and see the nurse all at the same time. No news on the bloodwork yet (which I'm assuming is good because it typically takes no more than an hour for the CBC results to come back), but the chemo nurse (actually the nurse practitioner...we had a nurse + her in the room) did prescribe her oxycontin in addition to the percoset to try to manage the pain. In addition to the new pain med, they have also put her on a 10 day course of antibiotics as a precautionary measure because of the fever.

Now I'm on to a whole different worry. (Always something, right?) My fear now is that she's not keeping the pills down long enough for them to be effective. I need to call the rad. onc. tomorrow...but I think I'm also going to call the chemo doc. to see if they have any suggestions. Within the past 24 hours, she's vomited twice within 30 minutes (or so) of taking her pills. I'm not sure what we can do to try to prevent that. She eats before she takes the pills (as much as she can, although admittedly it's not very much at this point), and she stays in bed after she takes them to avoid moving around. At first, she thought that moving around was causing her to feel sick to her stomach, but we've since realized that's not the case...or at least we don't think so.

Does anyone have any tips or tricks on the best ways/times/etc. to take pills so she has a better chance of keeping them down? I'm not sure if her getting sick is from the chemo ... or whether it's a side effect from the percoset.

Hoping for a semi-restful night tonight!
Chris

---------------------------------

Update as of 10/23
Hello again! Since you all have been so helpful, I wanted to provide a quick update. Last night was another rough night for my mom. From the looks of everything down there (literally) ... and from the pain ... she was starting to get concerned about whether the healing process had started, etc. She was also concerned about infection because of some leakage and the pain level. I spoke to the nurse at the radiation oncologist's office this morning about ways to further manage pain. The doctor asked to see my mom, so we went right down...

The doctor took a look and said that everything looks ok. It's still in a wet phase, so we're going to start sitz baths with Domeboro (if she can handle it). Hopefully that will expedite the drying process. He wasn't too keen on giving her anything other than more percosets...so that's what he did. He said she could supplement them with 600-800mg ibuprofen 3x/day. So we're going to give that a shot soon. She took a couple percosets when we got back...so in another half hour or so we're going to try the ibuprofen.

She was able to take a bath this morning (although it was painful) ... but she did make it through. We're going to try to do a bath every day or two, supplemented by the sitz bath. The doctor would like to see the sitz bath happen 3x/day.

Fingers crossed that she'll start healing and the pain will lessen. Her spirit was lifted when the doctor said everything looked ok, but I think deep down she wanted something that would have everything healed tomorrow ;) I'm sure lots of people dream of that during this time.

Thanks for listening...and keep the advice coming!
Chris

---------------------------------

Originally Posted 10/22
Hello everyone! I'm so glad I found this forum, and look forward to discussing our current situation, and answering questions whenever I can.

To start, my mother was diagnosed with squamous cell anal cancer about two months ago. She lives in Delaware and I live in upstate New York, but I am fortunate to be able to work from just about anywhere...so I came down immediately after her diagnosis, then again for weeks 3-5 ... had a work trip week 6 ... and got back down the day after her last radiation treatment (treatment Friday ... arrived Saturday).

Her treatment consisted of 6 weeks of radiation with chemo on week 1 and week 5. Her dose and area of radiation were increased on week 3 because she started feeling a growth on the outside of her anus. The final diagnosis was Stage II anal cancer, although there were some differences in opinion of her team (anal vs. rectal) ... but it is being treated as anal.

(I'm trying to pass along as much information as I know...so my apologies for elaborating too much...or if you need more info to answer any questions...I'd be happy to answer them)

When I came on week 3, she was doing great. Going to work every day (although not necessarily a full 8 hour day), cooking meals, eating, fairly normal bathroom habits, etc. By the time I left at the end of week 5, I had taken over most of the household responsibilities as it was requiring pretty much all of her energy to go to treatment and work for a few hours. That's why I'm here!

So I left for a week on a required work trip (week 6) that I really couldn't get out of. I could have, but would have jeopardized my job, so my Grandmother came up and stayed for the week. I still feel bad about that, but she made it through.

So now I come back this past Saturday (the day after her last treatment) and things have really taken a turn for the worse. From all the research I've done (the doctors haven't really been forthcoming with information), it seems to be the norm that the first two weeks after treatment ends are the worst.

She spiked a fever of 102.3 in the middle of the night Saturday which broke about 8am on Sunday morning. She's been running a low grade fever of about 99 ever since. I've already called the chemo doctor and they don't seem to be overly concerned because it didn't last very long.

The real issue for her at this point is her BMs. They come unexpectedly, and she has multiple accidents per day. This has also occurred a couple times now where she loses control of her bladder as well. She was taking 2 pills of Immodium for the max of 8 pills/day, but that wasn't helping. Today, the chemo doctor started her on Lomotil, but we haven't really seen results from that yet. The doctor did say to give it a couple days.

Needless to say, her anus and surrounding parts are pretty much black and blue. It hurts so much when she has BMs that I sit in the dining room listening to the screams coming from the bathroom. It was burning when she urinated, but she's now taking Pyridium and that seems to be helping for the most part. She is to the point where she's unable to wear underpants of any sort...and is pretty much bedridden. In addition, even water burns...so it's difficult to keep things clean. All of the creams that the radiation oncologist gave her burn a lot. She was able to put the Silver cream on a couple times today...and that's the first time she's been able to use anything other than plain aloe or water.

Hopefully that's not TMI...but I wanted to give others who have gone through this a feeling of where she is right now.

Going forward, we have follow-ups with the colorectal surgeon (she hasn't had surgery but he's "responsible" for her care) next Tuesday and then the chemo doctor on Wednesday. The surgeon says that we won't know if the treatment was successful for another 5 or 6 weeks.

At this point, I'm concerned about two things. First, we need to manage the pain. She's been taking Oxycodone for the past couple weeks and that seems to take the edge off for an hour or two, but she can only take them every four. In addition, I'm worried about the long term addictive side of the pills...so hopefully we'll start weaning off those soon. Does anyone have any suggestions for things we can try to alleviate some pain in the meantime?

Second, how long will it take to recover and not be in so much pain? The blisters are terrible and I can't begin to imagine the pain she's in, but know from the screaming/crying/etc that it's pretty much unbearable. We have a trip planned (for my wedding) in early December that will require a flight and hotel stay. Do you think she'll be ok by then? It's been scheduled for two years and we can't change it without forfeiting the money...but I'll do that if it means she's able to attend at a later date. At this point we're just waiting to see how quickly she feels better before making any decisions.

Thanks for reading my rambling post...and I look forward to building relationships on this forum!

Thanks so much,
Chris

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I'm so sorry your mom's diagnosis has brought you here. Everything you said about her pain is exactly what I went through--terrible burning with urination and BM's. I also had terrible diarrhea. I don't know how old your mom is, but I was 54 when I was diagnosed and in really good physical condition (except for the tumor in my butt!). My radiation doctor told me it would take about 3 weeks for me to see appreciable improvement in my skin, etc. However, it was only about 10 days and I was feeling much better. My hope is that your mom will make a quick recovery like I did. For relief from the burning, I would suggest soaking in the tub in lukewarm water. That gave me the most relief. While urinating, she might try squirting or spraying water on her genital area to dilute the urine and keep it from stinging. I understand that a peri bottle works very well for this. To help control diarrhea, plenty of white foods (rice, bread and bananas) may help slow things down. I would have her stay away from fresh fruits and veggies--way too much fiber this early (a bad mistake I made).

I wish your mom all the best. Believe me, recovery will happen. One day it will be like turning a corner for her and things will be much better. Just tell her to hang in there!

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the reply, mp327!

My mom was 50 when she was diagnosed and just turned 51 last week. The pain and BM issues definitely are the hardest for her to cope with. She was told that she should see significant improvement within 14 days...but I think that's hard to digest now that things seem to be getting worse and not better. Patience is a virtue...but we're running out! :) It's great to hear that 10 days afterwards you started to feel much better.

At this point, taking a shower or bathing in lukewarm water is very painful. We got her a sitz bath (sp?) to put over the toilet...but even that is too much at this point. I will tell her about the squirt bottle when she's urinating. She uses one now to clean after urinating or a BM (with lukewarm water) and that seems to be pretty painful on it's own. The meds they gave her to help with the burning while urinating have turned her urine a very dark color (which has even stained the toilet seat despite cleaning it right after). So it's definitely very concentrated.

I've been making very plain white foods for her regularly now. That really helped during weeks 3-5, but doesn't seem to be cutting it the past couple of days. White rice and bread is pretty much what she's eating. Based on what I've been reading here, I started a food journal for her so we can keep track of what she's eating and what bothers her. It sounds like that may need to continue for years (possibly). The one thing she's been drinking is fruit juice and I keep telling her to steer clear. Since I'm the son and she's the mom...it's hard to really "put my foot down". I will have to be a bit more adamant about that.

My aunt celebrated her 8th year anniversary for breast cancer today...and I can't wait to celebrate these anniversaries with my mom, too.

Thanks for posting! Any other tips or tricks are most definitely appreciated!

Marynb
Posts: 1134
Joined: Aug 2012

I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to. If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Marynb
Posts: 1134
Joined: Aug 2012

I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to and I walked around naked for a week or two. . If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Marynb
Posts: 1134
Joined: Aug 2012

I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to and I walked around naked for a week or two. . If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

Marynb
Posts: 1134
Joined: Aug 2012

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

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chrisfromny
Posts: 32
Joined: Oct 2012

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

law522
Posts: 37
Joined: Oct 2012

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

Marynb
Posts: 1134
Joined: Aug 2012

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

Rej0328
Posts: 21
Joined: Sep 2011

They put me on the fentonal patch. I can't remember how high the number was as they come in 25 and go up higher . I was worried about addiction also but the cancer dr told me we would deal with that later on. The most important thing was keeping me comfortable at the time. That way she doesn't have to take pills and the patches would last 12 hours. Good luck to you.

Rita

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the info about the fentonal patch. I plan on calling the radiation oncologist this morning...and will definitely ask about the possibility. Having something to take the edge off for a consistent 12 hours would be great!

Thanks so much,
Chris

horsepad's picture
horsepad
Posts: 77
Joined: Apr 2012

your mom sounds like she is going through common side effects. I had major problems with bm's, severe burns, pain, uti's, low blood counts, dehydration, etc. The good thing -within a month from final treatment, your mom should be feeling better. Most of my problems started after I finished treatmet and only lasted about a month. I think most people do feel alot better within a few months after treatment. Best wishes to your mom and thank you for being there for her, I am sure she appreciates it more than you knpw. I will say a prayer for her. God Bless.

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the prayers, horsepad. It's great to have a community of people that understand what she's going through. We're hoping that she starts to see some significant signs of relief in the next week or so. She's pretty much at her wits end when it comes to the pain!

Thanks,
Chris

mxperry220
Posts: 348
Joined: Mar 2011

I found Aquaphor ointment worked the best for me above any of the prescription ointments they gave me. This is over the counter you can get at Target, Walmart, CVS. As for foods I drank Ensure and ate white bread toasted cheese sandwiches and vanilla ice cream. The Ensure is rich in vitamins and minerals. I liked the banana flavor the best.

I well remember telling the radiation oncologist I hated to eat anything because I knew I would have immediate bouts of diarrhea. I had several accidents for several weeks after treatment. I am 3 years 9 months post treatment and still take immodium daily. I went from having 1-2 BMs daily to now 3-4 BMs daily but controlled. I found Advil worked best for me above any of the narcotic pain meds they gave me. Your mom might try non alcohol baby wipes and to blot not wipe her anus.

Quite honestly I could not have worked for several months after treatment. Fortunately I was retired when I was diagnosed with anal cancer. I was not comfortable getting too far from home for several months for fear of having an "accident" in public. I made sure I knew where the nearest restroom was in the store/business I went in because when the "urge" hit there was no holding it back.

Hope this helps some.
Mike

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

I will also ask the radiation oncologist about Aquaphor. She's tried many different OTC and rx ointments so far to no avail. She actually believes they are making things worse...although having never been through this before, neither of us know what's "normal" and what's being irritated by something she's doing. I think that's a major issue right now - she's worried she's making it worse.

The Ensure idea is great. We did buy some for her before this all started, but she's kept her appetite and loves her juice...which we now know is totally backwards. We're switching to all water for liquids...and we'll do the Ensure for vitamins and minerals! She loves bananas...and that's on the OK list for her diet...so I will run out and pick up that flavor.

I'm not going to tell her about the possibility of needing immodium for a while. I think that would just upset her unnecessarily. One step at a time at this point, but I'll keep that in mind as we move forward.

She is planning on going back to work either next week or the week after. She has a great support group at work, and if she's able to stay for only a couple hours...it'll make her feel better that she's contributing. She wanted to go back next week for sure...but I've since steered her away from making that promise.

We tried the non alcohol baby wipes and blotting technique...but that was way too much for her. We haven't tried that in a few days...so maybe we'll try that again here in the next day or two.

Thanks so much!
Chris

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Hi Mike,

I just wanted to follow-up with you and let you know that the Aquaphor is absolutely our topical cream of choice right now. There's practically no burning whatsoever, and it does provide relief. Thanks so much for posting this!!!

Chris

Dog Girl
Posts: 100
Joined: Sep 2010

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's picture
chrisfromny
Posts: 32
Joined: Oct 2012

I definitely plan on discussing pain relief today with the rad. onc. With all of the drugs that are out there...you'd think there would have to be something to control the pain.

She pretty much spends 95+% of her time in bed with her bottom exposed. She's just about to the point where there are no gowns. When she does get energetic she'll put one on...but for the most part it's totally commando from the waist down. Let's just say I've seen more than I ever cared to ;)

She does lay on a towel so that when she leaks...there's something there that we can easily wash. I'll recommend switching to the white towels so we can bleach them. We've destroyed quite a few articles of clothing and towels, etc. so far...but I just tell her that's nothing in the long run.

We bought vanilla yogurt but she doesn't really seem to be much for it. I'll have to get some plain greek yogurt and some honey...maybe she'll be more into that. She does really like sweet things. Vanilla ice cream is her favorite these days...although I'm not sure if that's irritating her GI tract or not.

Thanks for all the insight!
Chris

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

On thing you mentioned in your post to Dog Girl got my attention. Although ice cream may taste really good to your mom right now, it may be very hard for her to digest and could be contributing to her diarrhea issues. Yogurt would be a much better choice, as it has the bacteria that is good for regulating the gut. Just a thought!

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the advice, mp327!

She's stopped eating it for now and we'll only reintroduce items one at a time (I'm sure ice cream will be one of the first she tries to reintroduce). The new meds from the chemo doc definitely seem to be working. She hasn't had any diarrhea at all today, yet. I think, based on the advice here, she's seeing an improvement from the new rx, but also by stopping the intake of fruit juice (she really was drinking quite a bit).

We're delaying adding items at the moment, but I'll definitely keep this in mind when/if we reintroduce the ice cream!

law522
Posts: 37
Joined: Oct 2012

TY

AZANNIE
Posts: 371
Joined: Mar 2011

I can so relate to this. I'm so sorry your Mom is in pain. I was prescribed xenaderm for my burns. It's was a prescription ointment prescribed by the wound care nurse. I was blistered. I was told the xenaderm might burn at first, but it didn't and it helped. Lomotil gave me relief from the frequent and urgent BMs. Things started getting somewhat better about two weeks after treatment.
Wishing your Mom a speedy recovery!

Ann

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

7243
Posts: 211
Joined: Feb 2011

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.

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

AZANNIE
Posts: 371
Joined: Mar 2011

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

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

AZANNIE
Posts: 371
Joined: Mar 2011

I know what you mean about the disposable bed pads. Didn't think I would ever use them. I also wore disposable briefs for awhile because I was afraid of accidents. Never thought I would wear those either...
When I was in the hospital I was given Zofran for nausea and vomitting. It was given via IV, but it probably comes in pill form. Then again one doesn't want to overload the system with medications. It's so hard to know... In this day and age, one would think the drs. would know what to do for side effects. You're a jewel to be there for your Mom!
Hoping better days are ahead for both you and your Mom!

Ann

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mp327
Posts: 2818
Joined: Jan 2010

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's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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's picture
mp327
Posts: 2818
Joined: Jan 2010

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.

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chrisfromny
Posts: 32
Joined: Oct 2012

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

7243
Posts: 211
Joined: Feb 2011

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

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chrisfromny
Posts: 32
Joined: Oct 2012

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

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Lorikat
Posts: 551
Joined: Jul 2011

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!

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Congratulations on your one year! I'm praying that everything goes well...I know it will! I can't wait for her to be able to do something fun. I know it hasn't been very long since her last treatment, but she's definitely going stir crazy already. At this point, she's really looking forward to eating a good meal - including all the things she hasn't been able to eat for a while now. I think that will take quite a while to happen though.

Have a safe trip to Houston! Thanks for posting :)
Chris

law522
Posts: 37
Joined: Oct 2012

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

law522
Posts: 37
Joined: Oct 2012

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

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

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!

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the kind words, mp327! I participate in several online forums that are geared towards common interests, but nothing like this. One of the things that I've found most helpful in those other forums are posts where members leave behind a "what happened to me" type of story line. I certainly hope other people benefit from that post, and this entire thread for that matter. I know this community is helping people understand and comprehend what's going on...I know it certainly has for me!

Thanks :)
Chris

jennylouwho
Posts: 1
Joined: Oct 2012

Hi All.
This is my first time on. I went thru this ordeal 3 years ago and came out the other end (ha!) almost completely back to normal. But I wanted to add my 2 cents about a few things I did that REALLY helped. First, medical marijuana.....alleveated pain and helped me sleep like a babe. Also, I had an nightly elixir of locally made, organic apple juice mixed with drinkable aloe vera and that really helped me heal inside. Apple has pectin which is soothing on the lining of the intestines and ALOE is amazing. Also used aloe topically. As far as dilators go, why not go for a RABBIT vibrator? It's a lot more fun that those dialators. Really. Also, for all of us that have endured this, a bidet is a good investment. There is some speculation out there that Anal Cancer might be encouraged by constant tissue aggravation by acidic stools. Something to think about. Anyway, greetings to all of you. And for you and your mom, "it is always darkest before the dawn"
Blessings

law522
Posts: 37
Joined: Oct 2012

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's picture
chrisfromny
Posts: 32
Joined: Oct 2012

I finally figured out how to send a private message! Check your CSN Email :)

Talk to you soon,
Chris

mxperry220
Posts: 348
Joined: Mar 2011

I took one dose of oxycontin and had the same blurred vision and took no more and switched to Advil. As far as your mom vomitting, is she eating something before her anibiotic? I know they advise not to take antibiotics on an empty stomach. Your probably already are aware of this but I thought I would pass this along. Antibiotics can make a person constipated. She might want to take a laxative for this if it persists.
Mike

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the post! She is eating before she takes her pills. In fact, her appetite is coming back with a vengeance as of yesterday. It's great to see. Just another small step towards recovery. She's feeling so good this morning, she skipped taking her percoset. I'm hoping that helps a little bit with the constipation. Hopefully I can get in touch with the doctor tomorrow so we can discuss adding a laxative :)

Thanks!
Chris

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

Chris, your comments that your mom's appetite is making a real comeback and she didn't need to take her pain med this morning makes me smile! Baby steps! Soon she will feel SO much better! I hope both of you have a nice Sunday together.

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks so much! It's a great thing to see happen...that's for sure! I think she's going to take her percoset at lunchtime. She got a little too energetic this morning and decided to move the laundry from the washer to the dryer herself. She has stackables and whacked herself in the head with the door. Kinda funny now looking back on it. It's the little things!

We're having a nice relaxing day today. Had some breakfast, we're hanging out in the living room watching terrible TV shows, and I think we'll do much of the same this afternoon. We're as prepared as we can be for the storm. I'm just hoping we don't lose power...or if we do...not for too long. They've evacuated quite a few people from lower lying areas of the city that we're in...but we're pretty high in elevation so we aren't concerned about that, luckily.

I'm hoping for more baby steps in the next couple of days! This is so exciting!

Thanks again,
Chris

Marynb
Posts: 1134
Joined: Aug 2012

Hi Chris,

I am right on the shore in New England and they are telling us we could be without power for a week or two! We lost power for a week last October after hurricane Irene. So, I am headed out to grocery store too. Thinking bread, peanut butter, organic apple sauce, canned tuna, water, rice cereal, boxes of milk........ugh. Flashlights, candles.......omg! My appointment with the oncology team is next week. I hope it is not delayed.

Good luck down iin Delaware. Keep me posted as to whether it hits. I am on coast on Mass./ RI line. Your mom's burns sound dreadful. I always vomit if given pain meds, so I stuck with tylenol only. God bless you, you are one terrific son! She must be a great Mom! I hope she feels better very soon.

Batten down the hatches and stay safe!

Mary

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