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

chrisfromny

mp327 said:

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

Trying to help!
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

chrisfromny

law522 said:

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

The support is great
I finally figured out how to send a private message! Check your CSN Email

Talk to you soon,
Chris

AZANNIE

AZANNIE said:

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

Ann

Chris
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

chrisfromny

mxperry220 said:

Aquaphor
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

Aquaphor!
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

jennylouwho

chrisfromny said:

Trying to help!
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

More tips
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

mxperry220

Suggestions
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

Marynb

Big storm cometh!
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

mp327

Marynb said:

Big storm cometh!
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

My east coast friends--
I will be praying for all of you that you may stay safe, dry, warm, and not be in the dark!

sandysp

Stool Softeners by the handful
Honestly, with the pain medication, I found it was important to take up to six stool softeners a day. I don't know what stage is, but you brought back my memories of screaming in the toilet. I did that too once I was toward the end of the treatment and after the end of the treatment since the treatment is cumulative in nature.

As far as flying in December, I find that flying gives me some pretty significant side effects. This, apparently is because I was treated in my lymph nodes since three of them were suspicious for cancer. Now I have problems in pressurized cabins. So I would say yes she can probably do it, but she may suffer some side effects and may need a great deal of rest when she gets there and, if she is like me, may need to bring her pain meds. I have a lot of pain when I fly but evidently for people who were treated as I was, this is not an abnormal complaint. I worried a lot about some of the pain meds I was given that I totally needed but when I stopped having extreme pain, I did not feel any need to take the meds. I did not suffer from addiction to them. I hope this is the case with your mom. No one should have to suffer from extreme pain in this day and age. Encourage her to take the meds and stool softeners.

Sounds like you are near the end of the worst of it. Hang in there and congratulations on your upcoming wedding. You deserve to have a wonderful time.

All the best,
Sandy

geneviasue

Good News
Chris,

I'm glad to hear your mom has felt better and having some good days/hours/moments. I know she is relieved and felling more optimistic.

Take care during the storm and I'll be watching for more uplifting updates. God bless you both.

GiGi from TN

chrisfromny

mxperry220 said:

Suggestions
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

Thanks, mxperry220!
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

chrisfromny

Marynb said:

Big storm cometh!
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

Thanks Mary!
Thanks for posting, Mary! It looks like it's going to be pretty nasty here...and all over the northeast for that matter. I'm still think they might be hyping it up a little bit to get viewers/listeners/etc...but I did get to the store yesterday and stocked up. I think I bought the last 2 D batteries in all of New Castle County! So at least we'll have a flashlight that works. She has lots of candles here too...so we should be good to go.

Your list of food sounds pretty much like what I bought...minus the boxes of milk. I never even thought of that! My thought is that at least a day or two after the storm...there will be some place open that we can get food from if we need it. We have a decent amount of non-perishables...and tough times call for tough measures...so we'll make do

We're lucky that she lives in a Condo complex...so there wasn't too much for us to do to get ready outside. I moved all of her patio furniture and garden decorations into the garage. Same with her little grill. It's nice to know I'll have that to cook on if we lose power since her stove is electric!

Stay Safe!
Chris

chrisfromny

sandysp said:

Stool Softeners by the handful
Honestly, with the pain medication, I found it was important to take up to six stool softeners a day. I don't know what stage is, but you brought back my memories of screaming in the toilet. I did that too once I was toward the end of the treatment and after the end of the treatment since the treatment is cumulative in nature.

As far as flying in December, I find that flying gives me some pretty significant side effects. This, apparently is because I was treated in my lymph nodes since three of them were suspicious for cancer. Now I have problems in pressurized cabins. So I would say yes she can probably do it, but she may suffer some side effects and may need a great deal of rest when she gets there and, if she is like me, may need to bring her pain meds. I have a lot of pain when I fly but evidently for people who were treated as I was, this is not an abnormal complaint. I worried a lot about some of the pain meds I was given that I totally needed but when I stopped having extreme pain, I did not feel any need to take the meds. I did not suffer from addiction to them. I hope this is the case with your mom. No one should have to suffer from extreme pain in this day and age. Encourage her to take the meds and stool softeners.

Sounds like you are near the end of the worst of it. Hang in there and congratulations on your upcoming wedding. You deserve to have a wonderful time.

All the best,
Sandy

Thanks Sandy!
Thanks for the post, Sandy! I'm beginning to think that stool softeners need to be added...and added soon. I'm thinking about running to the pharmacy today to get some since we might not be able to get out on Monday or Tuesday if this storm is as bad as they say. This way, at least I'll have them here when we talk to the doctor on Monday if they say to start taking them.

Thanks for the info about flying. They did expand the radiation area after the first couple of weeks...so I have a feeling she'll be in a similar situation as you. We will definitely make sure she's well stocked before the trip, assuming she feels like she can make it!

We're getting low on percosets already ... but she didn't take them this morning. We may not be able to restock on those until Wednesday...so we're trying to ration them a bit. We both thought we'd be able to get out tomorrow morning, no problem...but that's not what they seem to be saying on the news now.

I'm definitely hoping there aren't any addiction issues afterwards, but they are absolutely needed right now and a lifesaver, really!

Thanks again
Chris

mp327

chrisfromny said:

Thanks, mxperry220!
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

Such good news!
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

mp327 said:

Such good news!
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.

Thanks
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

chrisfromny said:

Thanks Mary!
Thanks for posting, Mary! It looks like it's going to be pretty nasty here...and all over the northeast for that matter. I'm still think they might be hyping it up a little bit to get viewers/listeners/etc...but I did get to the store yesterday and stocked up. I think I bought the last 2 D batteries in all of New Castle County! So at least we'll have a flashlight that works. She has lots of candles here too...so we should be good to go.

Your list of food sounds pretty much like what I bought...minus the boxes of milk. I never even thought of that! My thought is that at least a day or two after the storm...there will be some place open that we can get food from if we need it. We have a decent amount of non-perishables...and tough times call for tough measures...so we'll make do

We're lucky that she lives in a Condo complex...so there wasn't too much for us to do to get ready outside. I moved all of her patio furniture and garden decorations into the garage. Same with her little grill. It's nice to know I'll have that to cook on if we lose power since her stove is electric!

Stay Safe!
Chris

Hi Chris
I am so glad your Mom is on the road to recovery! That is terrrific! Well, it is dark and tropically muggy here today. I started bringing in the deck furniture, but I am not very strong so I have to do a little at a time. I went to the store yesterday and could not get any bottled water...sold out. I am going to venture out again in a few minutes. The problem we have in New England is that the trees still have leaves and they overhang electric wires. It seems every time there is the least little breeze, we lose power for a week! National Grid is reeally bad here!

Seems the cat senses something because she is following me around the house, crying. This week is my oncology team meeting and I hope it is not postponed....but if it is, I will deal.

Hang in there and. am so glad your Mom is feeling better!

Let me know if the storm gets bad there. I may have to evacuate !

Mary

chrisfromny

Marynb said:

Hi Chris
I am so glad your Mom is on the road to recovery! That is terrrific! Well, it is dark and tropically muggy here today. I started bringing in the deck furniture, but I am not very strong so I have to do a little at a time. I went to the store yesterday and could not get any bottled water...sold out. I am going to venture out again in a few minutes. The problem we have in New England is that the trees still have leaves and they overhang electric wires. It seems every time there is the least little breeze, we lose power for a week! National Grid is reeally bad here!

Seems the cat senses something because she is following me around the house, crying. This week is my oncology team meeting and I hope it is not postponed....but if it is, I will deal.

Hang in there and. am so glad your Mom is feeling better!

Let me know if the storm gets bad there. I may have to evacuate !

Mary

Stay safe, Mary!
Oh boy! I hope you're staying safe and can find water. I have National Grid at home (near Albany, NY) and they are absolutely terrible about clearing tree limbs from power lines there too. Must be standard procedure for them. Drives me nuts. Even if I call, they don't seem to do anything.

We have the first f/u with the surgeon on Tuesday and I'm sure that's going to get moved. He's only in the office Mondays, Tuesdays and Fridays so hopefully we'll be able to get in on Friday.

National Grid has called in recovery teams from as far away as the west coast...so hopefully if you do lose power...it won't be for too long! I'm very nervous because there are some huge trees in the back of my house at home and with all the rain...I'm hoping they don't come down on the house. They are my neighbor's or I would have already had them taken down.

I hope your meeting is not postponed...but it's better to stay safe than risk getting hurt venturing out before the storm has passed.

I'll keep you updated and hope you don't have to evacuate!!!
Chris

eihtak

Pain management
Hi, glad to see your mom has had some pain relief. I was in horrific pain even before treatment began, and started taking oxycontin at the start. My tumor size and placement made it so I could not even sit or lay on my back. At times I would fall asleep kneeling on the floor beside my bed with my head on a pillow, or just pace the floor massaging my butt cheeks to get relief! I stayed on the pain meds throughout treatment and several months of recovery (dosage slowly increasing). Just as I was feeling better and weaning off them I had a second cancer diagnoses of breast cancer, so remained on the oxycontin for several more months through that treatment. I am now 1.5 yrs post treatment for Anal Cancer, and 6 months since breast surgery (some treatment is long term). At times I felt like a drug addict with the amount of oxy I was taking, but if managed correctly can sure make things more tolerable! In this day and age there is no reason to suffer when there is help available. My advice is to take a mild stool softener though, I took 1-2 Senna daily since the oxy can cause constipation. Also as much water as possible. When I was both physically/mentally ready to be done with the pain med the dose was lowered every 2wks so I could just wean off. I had a couple uncomfortable nights but nothing too awful. I seldom take even a tylenol now unless I've really overdone things. Hope this is going to make her/your recovery a bit smoother. As always, all in my prayers.

chrisfromny

eihtak said:

Pain management
Hi, glad to see your mom has had some pain relief. I was in horrific pain even before treatment began, and started taking oxycontin at the start. My tumor size and placement made it so I could not even sit or lay on my back. At times I would fall asleep kneeling on the floor beside my bed with my head on a pillow, or just pace the floor massaging my butt cheeks to get relief! I stayed on the pain meds throughout treatment and several months of recovery (dosage slowly increasing). Just as I was feeling better and weaning off them I had a second cancer diagnoses of breast cancer, so remained on the oxycontin for several more months through that treatment. I am now 1.5 yrs post treatment for Anal Cancer, and 6 months since breast surgery (some treatment is long term). At times I felt like a drug addict with the amount of oxy I was taking, but if managed correctly can sure make things more tolerable! In this day and age there is no reason to suffer when there is help available. My advice is to take a mild stool softener though, I took 1-2 Senna daily since the oxy can cause constipation. Also as much water as possible. When I was both physically/mentally ready to be done with the pain med the dose was lowered every 2wks so I could just wean off. I had a couple uncomfortable nights but nothing too awful. I seldom take even a tylenol now unless I've really overdone things. Hope this is going to make her/your recovery a bit smoother. As always, all in my prayers.

Thanks eihtak!
Thanks for checking in and sharing your story. I couldn't imagine going through the anal cancer and then having to deal with breast cancer. You're so strong!

I'm going to call the doctor first thing tomorrow when they open to talk to the nurse about the stool softener. I'm feeling very confident that they'll want us to start that. We do have some here...but I'll need to get more to make it through the storm if they want her taking more than one or two per day.

She hasn't had a BM since last Thursday night (which coincided with when she started the oxycontin). She's tried multiple times but nothing happens.

When the pain flares up, she does the same kneeling routine with her head down. Looking at her makes me so sad, but I realize that there's not much that can really add to the relief at that point. That's typically after she does a sitz bath or urinates. Luckily, we haven't had any of those episodes today...so I'm really hoping we've turned the corner and are actually seeing some progress.

Thanks so much for your post!
Chris