3 days on 3 days off - can't think of a better title!

Adam26 · February 2015

Hi all,

Just a couple of questions. My mum is 4 months, well just over, post treatment. She said to me she has like 3 days (for example) of pain-free BMs and then another 3 days of slightly or sometimes, not slightly, painful BMs. So basically, she's without pain some days and with pain the other days and this alternates though gradually getting better over time. Is this normal? I'm guessing one of the variables here would be the food she eats each day. Are there any she could eat and can she drink wine occasionally?

Do you know how long the inflammation can hurt for? I know I've probably asked this a million times, from memory I think several months is normal.

Our dog has got lymphoma. We've had her for about 10/11 years, she's deaf and was a stray who had been abandoned. She's had a great life with us but unfortunately I don't think she has very long left. I hate this disease.

My mum is doing well generally. She's back at the gym now, out and about but twice a day she still makes a dash to the toilet. Our main priorities right now are with our dog and my mum's recovery, I think in time my parents will be voyaging abroad to have a look at places to live, in France and Spain and I plan on doing some travelling too. Hope everyone is doing well : )

GoodDog2 · February 2015

Dog

Wait. MY dog (pictured) got high grade lymphoma when I was going through treatment too. Well, he was diagnosed a month after I finished treatment. He put up a good fight though. He was an 11year old lab. Beautiful hunk of dog. I miss him terribly. of all the dogs in my life he's the one that will be waiting for me.

But back to your topic, I am 14 months out and can find no rhyme or reason to the pattern. Now I seem to go 3 or 4 weeks with no pain or bleeding then a couple of weeks on. My rectal surgeon does feel it's scraping on the tender tissues. He has me on fiber supplement (I didn't think I needed one because I already have high fiber diet, but whatever the boss says). Then short term, two months, high dose of vitamin A and , uh, lubricate the chute. We will see what we will see.

i think some people on the forum drink wine but honestly I haven't liked it since chemo so I don't know about that.

mp327 · February 2015

Adam

I hate to say it, but even at almost 6 1/2 years out of treatment, I experience cranky bowels sometimes. I have an occasional painful BM if I get constipated and the stool is hard to pass. For some of us, unfortunately, this is something we may have to deal with the rest of our lives. It's one of the cruel realities of this disease.

I'm sorry to hear about your dog. How I wish we could have our precious pets forever.

I'm glad your mom is getting exercise--it's great for the body, mind and soul!

Martha

Phoebesnow · February 2015

mp327 said:
Adam
I hate to say it, but even at almost 6 1/2 years out of treatment, I experience cranky bowels sometimes. I have an occasional painful BM if I get constipated and the stool is hard to pass. For some of us, unfortunately, this is something we may have to deal with the rest of our lives. It's one of the cruel realities of this disease.

I'm sorry to hear about your dog. How I wish we could have our precious pets forever.

I'm glad your mom is getting exercise--it's great for the body, mind and soul!

Martha

Pain

4 1/2 later I have incredible pain every time i have a BM. Sometimes I vomit! I bled for three years. No blood now for over a year. Somemetimes i scream out lound from the shooting pains in my groin and inside me. I hope your moms reovery from chemo and radiation goes as smooth as it can. I never expected to go back to normal as my doctor explained that would be impossible.

On the other hand if I give myself plenty of time for bowel movements, keep my diet light and healthy, and get plent of exercise I feel ok sort of.4/12 years later I am still feeling improvements in my energy level.

My advice is get plenty of rest, drink tons of water, keep a food diary and roll with it.

Adam26 · February 2015

Thanks

Hi guys,

Thanks for your replies. Was my birthday yestersay so we went up to see our family for the first time since the diagnosis! We hadn't told my grandparents about it as cancer was a death sentence in their day and we didn't want to worry them. Was great to see them though, sort of like old times!

It's good to know then that what my mum is experiencing is expected. To be honest, she isn't really worried about it, I think she's just happy to be NED and out and about again. But I always like to check these things with you guys and I know that your relies mean a hell of a lot to her.

I'm sorry you still all struggle with certain aspects of the disease, but I hope you can enjoy life at least.

My dog is a lovely girl and it'll be very sad when she departs, but rest assured, she is well loved and looked after by us.

All the best everyone

Adam

Adam26 · February 2015

Phoebesnow said:
Pain
4 1/2 later I have incredible pain every time i have a BM. Sometimes I vomit! I bled for three years. No blood now for over a year. Somemetimes i scream out lound from the shooting pains in my groin and inside me. I hope your moms reovery from chemo and radiation goes as smooth as it can. I never expected to go back to normal as my doctor explained that would be impossible.

On the other hand if I give myself plenty of time for bowel movements, keep my diet light and healthy, and get plent of exercise I feel ok sort of.4/12 years later I am still feeling improvements in my energy level.

My advice is get plenty of rest, drink tons of water, keep a food diary and roll with it.

Hi Phoebe,
Just out of

Hi Phoebe,

Just out of interest, your doctor doesn't expect you to go back to normal, does that mean he thinks you will have the pain during BMs for ever?

Does anyone find that the urgency improves? My mum is still getting "caught short" and worries about travelling etc.

qv62 · February 2015

Adam26 said:
Thanks
Hi guys,

Thanks for your replies. Was my birthday yestersay so we went up to see our family for the first time since the diagnosis! We hadn't told my grandparents about it as cancer was a death sentence in their day and we didn't want to worry them. Was great to see them though, sort of like old times!

It's good to know then that what my mum is experiencing is expected. To be honest, she isn't really worried about it, I think she's just happy to be NED and out and about again. But I always like to check these things with you guys and I know that your relies mean a hell of a lot to her.

I'm sorry you still all struggle with certain aspects of the disease, but I hope you can enjoy life at least.

My dog is a lovely girl and it'll be very sad when she departs, but rest assured, she is well loved and looked after by us.

All the best everyone

Adam

Adam26

Happy Birthday Adam, glad to hear mom is out and about. I am 8 months out and just starting to exercise so kudos to her for sure. As for the pain and urgency I have occasional pain and unfortunately urgency every day, several times a day. I hope she continues to feel better.

Phoebesnow · February 2015

qv62 said:
Adam26
Happy Birthday Adam, glad to hear mom is out and about. I am 8 months out and just starting to exercise so kudos to her for sure. As for the pain and urgency I have occasional pain and unfortunately urgency every day, several times a day. I hope she continues to feel better.

Urgency

My doctor went over all the possibilities with me. I signed a sheet or two listing all the possible side effects. The painful B.M. were not even on the list. Things like malabsorption, pernicious anemia, chronic pain, stenosis, neuropathy and even cancer plus many others were on the list. I don't know why I have the pain. I have perfect poop and lots of it. But it is difficult to get it out. I have run the gamut from perfect poop for a year to constipation for 1 1/2 b years back to perfect poop again. I pray I can keep it that way. This is a twisted road . The urgency, I would never hold it in. I think that is how I ended up with the chronic constipation. Everything is a delicate balance. I eat and drink at home. I do go out to eat with my husband. But I never go alone now. Why risk it! It's 4 1/2 years now and I have accepted all of it. I have had three accidents out, big ones! Ihave horrible gas for months at a time. I have no control over it. Hysterical! It was worth it! I love my life! The urgency for your Mom may or may not go away, the same with the pain. It never seems to let up for me problem after problem. Poop is the least of it!

i play with my dog , walk, work and even surf. I wouldn't be doing that if I had not had the TREATMENT!

im very impressed that your Mom is back at the gym. I was 49 at diagnosis. It was at least a year before I had the extra energy for anything. Maybe she will be one of the lucky ones. Is she using her dialator! I think we all get the vaginal stenosis.

I am sorry to hear about your dog. I have lost my soulmate , my dog soulmate a few years ago. I think of him everyday.

Happy Birthday Adam!

Adam26 · March 2015

Hey guys!
Firstly, to Eihtak,

Hey guys!

Firstly, to Eihtak, I hope your chemo goes well and you can get back to your normal life again soon. I wish you all the best with your recovery and also, thank you for the link, that was exactly it!

To everyone, thank you so much for your replies. They made total sense to me. Luckily, this "friend" hasn't been on the scene since then. My mum has had more positive support around her which is fantastic. People need to be more considerate with what they say!

My mum's doing good. Although she gets paranoid about the odd pain somewhere and suddenly she thinks she had another form of cancer. She spoke to her doctor about anxiety etc and had a check up of her weight which was normal and various other questions were answered. She's much better now and it was her birthday yesterday, she actually was feeling subdued because she didn't like all the attention - it reminded her of when she was first diagnosed. I can't believe it's been over 5 months now since she finished her treatment! It seems to be mainly the mental aspect of recovery that is worse for her, but she's gradually getting better both mentally and physically.

One thing I obols like to know. We were hoping to be moving abroad at the end of the year, mentioned it before, to Barcelona or just outside it. At the moment though, she can't really get on a plane because of her urgencies. She's worried about a lack of public toilets in Barcelona and inter-European planes are tiny and normally the toilets aren't that great. If she's 5 months out now and doing better, based on your experiences, do you think she'd be fit to travel by October which would be a year after treatment? She's a very restless lady and hates that she has to wait around.

Martha I know you mentioned about considering staying off the site at some point. It must be very hard to decide because on one hand, perhaps you want to distance yourself from cancer after many years NED and on the other hand, you do such a lot of good work for other people, such as myself and my mum. But you have to do what is best for yourself. Thank you for all of the help you've given me and thank you to everybody else too. This website was really useful for me during the darker days and still is useful now. My mum wants to write a message so I'll start up another thread.

All the best,

Adam

mp327 · March 2015

Adam26 said:
Hey guys!
Firstly, to Eihtak,
Hey guys!

Firstly, to Eihtak, I hope your chemo goes well and you can get back to your normal life again soon. I wish you all the best with your recovery and also, thank you for the link, that was exactly it!

To everyone, thank you so much for your replies. They made total sense to me. Luckily, this "friend" hasn't been on the scene since then. My mum has had more positive support around her which is fantastic. People need to be more considerate with what they say!

My mum's doing good. Although she gets paranoid about the odd pain somewhere and suddenly she thinks she had another form of cancer. She spoke to her doctor about anxiety etc and had a check up of her weight which was normal and various other questions were answered. She's much better now and it was her birthday yesterday, she actually was feeling subdued because she didn't like all the attention - it reminded her of when she was first diagnosed. I can't believe it's been over 5 months now since she finished her treatment! It seems to be mainly the mental aspect of recovery that is worse for her, but she's gradually getting better both mentally and physically.

One thing I obols like to know. We were hoping to be moving abroad at the end of the year, mentioned it before, to Barcelona or just outside it. At the moment though, she can't really get on a plane because of her urgencies. She's worried about a lack of public toilets in Barcelona and inter-European planes are tiny and normally the toilets aren't that great. If she's 5 months out now and doing better, based on your experiences, do you think she'd be fit to travel by October which would be a year after treatment? She's a very restless lady and hates that she has to wait around.

Martha I know you mentioned about considering staying off the site at some point. It must be very hard to decide because on one hand, perhaps you want to distance yourself from cancer after many years NED and on the other hand, you do such a lot of good work for other people, such as myself and my mum. But you have to do what is best for yourself. Thank you for all of the help you've given me and thank you to everybody else too. This website was really useful for me during the darker days and still is useful now. My mum wants to write a message so I'll start up another thread.

All the best,

Adam

Hi Adam

Thank you so much for your kind words to me--that means a great deal to me and I'm glad that something I've said along the way has helped you or your mom or others on this site. As is obvious, I'm still here, checking in daily and trying to respond whenever I feel I have something to offer. I really appreciate your support and kind comments to me and I will do my best to not fade completely into the sunset!

As for your mom's concerns about traveling, I can understand. I made a trip to California about 2 1/2 years ago and was so worried that I'd get on that plane and not be able to get to the bathroom in time. However, I tweaked my diet somewhat a couple of days before the trip, cutting back on high-fiber foods, such as fruits and veggies. Basically, I followed a low-residue diet. If you look that up on the internet, you'll find that it is good for resting the bowels, which means fewer or no BM's. Of course, it is meant to be used only for short-term, but perhaps if your mom could eat differently a day or two ahead of the trip, she could avoid any incontinence or urgency issues. It's just a suggestion. Hopefully by October, however, her bowels will be behaving even better, as things do get better with time.

Please tell your mom that Martha from across the pond wishes her a belated happy birthday. I never celebrated birthdays quite like I do now since having had cancer. I have come to realize what special days they are and a celebration is definitely in order! I wish her many, many more happy birthdays!

God bless you and your mom as you both continue to move forward in your lives. I hope you'll both enjoy living in Barcelona and I wish you both the very best!

Martha

Cazz · March 2015

Adam

Hi Adam,

I am about the same time post treatment as your Mum, though not lucky enough to be NED. I have huge urgency in the mornings and go about five times, but after about 10 am things calm down. Lately, I've had a couple of early morning appointments for scans and worried about the bm issue. I have found that if I get up at least an hour earlier than I need to, and get a bit nervous about the appt, I can get some of the issue out of the way before I have to leave. I then put on my Depends (incontinence underwear for women, not pretty, but don't show under trousers), pack my flannel/washcloth, spare Depends and ordinary knickers, a few wet wipes and a spare pair of yoga pants and head out. So far I have been lucky the three times I've done this and my bowels have cooperated, I think its the Depends that scare the heck out of them! Know where the toilets are along the way to the airport, and yes, the airplane toilet is tiny, but if you need it, its there. Barcelona is lovely, but you are right, not too many public bathrooms, you have to keep an eye out for McDonalds or other modern cafes where you may have to buy a cup of coffee, but oh so worth it.

I can understand your Mum getting antsy and wanting to get out and do things, I too have had to shelve all travel plans while waiting to see what the next round of chemo is going to bring and how long it will last. I am itching to go to England to see my Mum and go on a cruise and do all the things that we had planned to do before I got hit with this darn cancer - fie on it!

It sounds like you are a great son and your Mum is lucky to have you looking out for her.

Carol

0626june · March 2015

mp327 said:
Hi Adam
Thank you so much for your kind words to me--that means a great deal to me and I'm glad that something I've said along the way has helped you or your mom or others on this site. As is obvious, I'm still here, checking in daily and trying to respond whenever I feel I have something to offer. I really appreciate your support and kind comments to me and I will do my best to not fade completely into the sunset!

As for your mom's concerns about traveling, I can understand. I made a trip to California about 2 1/2 years ago and was so worried that I'd get on that plane and not be able to get to the bathroom in time. However, I tweaked my diet somewhat a couple of days before the trip, cutting back on high-fiber foods, such as fruits and veggies. Basically, I followed a low-residue diet. If you look that up on the internet, you'll find that it is good for resting the bowels, which means fewer or no BM's. Of course, it is meant to be used only for short-term, but perhaps if your mom could eat differently a day or two ahead of the trip, she could avoid any incontinence or urgency issues. It's just a suggestion. Hopefully by October, however, her bowels will be behaving even better, as things do get better with time.

Please tell your mom that Martha from across the pond wishes her a belated happy birthday. I never celebrated birthdays quite like I do now since having had cancer. I have come to realize what special days they are and a celebration is definitely in order! I wish her many, many more happy birthdays!

God bless you and your mom as you both continue to move forward in your lives. I hope you'll both enjoy living in Barcelona and I wish you both the very best!

Martha

Martha,

Adam is certainly correct in saying that you surely should do what feels right to you in your life, which may well be not being immersed in the anal cancer 'community". That said, I know you have been a wonderful help to me, particularly as I was reeling during treatment. Your kind and gentle spirit sets the mood for this site. You are the angel of hope!

Love to you,

June

mp327 · March 2015

0626june said:
Martha,
Adam is certainly correct in saying that you surely should do what feels right to you in your life, which may well be not being immersed in the anal cancer 'community". That said, I know you have been a wonderful help to me, particularly as I was reeling during treatment. Your kind and gentle spirit sets the mood for this site. You are the angel of hope!

Love to you,

June

June

Awwwwwww, you are very sweet to say that and I thank you so much for the kind words. I appreciate them very much! I guess what keeps me coming back is knowing that there are few long-term survivors of this disease who continue to be active on sites such as this one. I have the hope that hearing from an "oldie" like me will give others encouragement and hope that this disease can be beaten. Had I heard that from someone who was a long-term survivor when I was diagnosed, I'm sure it would have kept me from feeling doomed, which is how I felt. All that said, I certainly understand the need for survivors to move on with their lives and would never criticize their lack of continuing participation on sites such as this one. At some point I will become less of a presence here but hope not to drop completely out of site for the reason stated above.

Love right back to you, my friend, and thank you again for your kindness.

Martha

3 days on 3 days off - can't think of a better title!

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