Living with the long-term side effects

3cbrca

I know that this doesn't apply to everyone, but I'd like to hear from those that are affected, how they mentally manage the long term side effects of cancer treatment.
I had my entire colon removed 4 years ago for early stage genetic colon cancer and ended up hospitalized within that same year for a small bowel obstruction which is a common side effect with increasing risk over time (i.e. the farther away from surgery, the higher the risk). It took more than a year and 1/2 to be able to eat like a (somewhat) normal person.

I finished my breast cancer treatments in August of 2007 and was ready to get on with my "new normal" and start pursuing my reconstruction options, but I'm beginning to feel like I am a "professional patient" and I don't like it. I have had my seromas (complication from bilateral mastectomy) drained more than a dozen times since last June. I am now scheduled to have the drains put back in indefinitely. I have lymphedema and have to have to perform self drainage massage every morning and night as well as morning and night exercise to keep the lymph system pumping. BTW Lymphedema is very painful, so I am about the exercise and massage, but it doesn'ter really go away. I'm also having professional massage for lymph drainage twice a week.

I have gained so much weight and was developing a belly like Buddha which recently became very painful so I had to cancel my visit with the Plastic Surgeon to see the Colo-Rectal Surgeon. My doctor thinks I have a another bowel obstruction and that I may have adhesions from the colon surgery and may require more surgery. I'm still waiting for the results from the abdominal CT and Ultrasound. My colon doc also did some bloodwork and I just got the results. The good news is the bowel obstruction may be caused by the fact that my thyroid is barely functioning which is treatable with medication. It appears that the RT for the breast cancer severely damaged my thyroid which in turn has caused a host of new medical problems that none of my older siblings have.

I am grateful to be alive and all of the rest, but there are days when my acceptance of living with all of this is a little slow in coming. I thought I was very healthy and fit before all this started and I can usually laugh about turning 50 and imploding, but its been hard the last few weeks. I go from one doctors office to the next. My health care schedule is like a pharmaceutical sales rep and I am really trying hard to work and avoid going out on disability but I can barely fit work into my day.

The only good thing about all this is that I am so busy dealing with current issues is that I don't have much time left to worry about the cancer itself.

Okay! That's my rant. My massage therapist is very healing and I am speaking to a psychologist about changing careers but I really do want to hear what kinds of tools that you women have for coping on those days when this stuff isn't very funny. At the very least - thanks for listening!

Once again, thanks for being out there in cyberspace. I'm so glad I stumbled on to this site!

Sheilah

Unknown

Good Lord, Sheila!
I lost both breasts to cancer (at different times) but my after-effects are so minimal compared to yours that I can't begin to advise you in any constructive way.
All I can say is that it seems to me you are doing all the right things, thereapy, staying involved in life, taking good care of yourself.
God bless you dear. I hope we can help you cope in some way. Join us in the chat rooms if that is your 'thing'.

phoenixrising

Dear Sheilah,

Life sure can get complicated fast. You are not having a good day and that is totally understandable. If my husband is any judge you have had a particularly painful type of cancer. He had colorectal ca in 2003. They removed his rectum. Due to the location of his plumbing he wasn't able to get the J pouch and he will never eat normally. If he tries he pays for it severely. And he loves food!

You probably know this but opioids can cause ileus which prevent the bowel from moving and looks like a blockage on the x-ray. So painful he would be delirious. Codeine is an opioid. Tylenol 3 contains codeine. I only say this because it has prevented my husband from more surgeries as not all surgeons know about it or take it seriously. It shows up on the x-ray as a blockage. My husband has had numerous ileus attacks and refuses now to see a doc about it or go to the hospital. Senna reverses the opioid effect. When he thinks he's having an attack he will take senna. He had to go off the tylenol 3's but remains to this day on opium and belladonna suppositories which have been a saving grace for him. A lot of docs didn't know about that either. It's an old remedy. He uses only what he has to and if he feels an attack (at little like indigestion) he takes the senna. The opium is for pain and the belladonna has a paralyzing affect so he doesn't have to go constantly since he doesn't have a holding pouch.

I'm not sure what ongoing problems you are having with your bowel but my hubby uses flax/bran mixture, to neatly wrap the package up. O&B supps for pain and frequency. We have also used tannic acid to slow things down, found in tea, strawberry/raspberry leaves.

It's hard when our self image is totally shattered. From healthy, fit and vibrant to disease, operations, medications, complications. You asked what we do to help make it through. I focus on health and strength and try and keep it at the forefront. Picture and desire it. It then seems easier to make choices that bring it to us. Exercise has made a difference in how I feel mentally and physically. I will do something spiritual to help me get connected. For me I've always resonated with native "religion/philosophy" so I will burn a combo of cedar, sweet grass and sage and give a tobacco offering. For others maybe church or reading a favorite passage of the bible might help. Visiting a friend sometimes clears things up. If all else fails I get "p#$%d and get on the internet and try to find natural solutions to my problems so I don't continue to fall down this bottomless pit. At least then the adrenalin is flowing and I feel like I have some control. I like to fool myself once in a while. And sometimes it's just the meds we are on. I've run out of tamoxifen and am starting to feel great. Sleeping through the whole night which gives me more energy and a better outlook the next day. But I will have to resume taking it soon:-(

For me I am grateful to not be working at this point and can focus on doing what I need to do to improve my situation without being stressed out about work. They won't curl up and die without me. Almost but not quite

I'm sorry I can't help you with the lymphedema as I wouldn't let them take all my lymph nodes and I refused rads. Something I may regret in the future. I know some of the gals here will be able to give you better info concerning these things.

And Sheilah, some days life sucks and we don't feel grateful. And that is OK. But it does pass.

If you would like to talk just email me your phone # and I would be happy to give you a call.

I sure do talk a lot don't I?

Hope things brighten up for you

jan

24242

If you go to my personal website there is a speech that I gave to a Living Well With Cancer Conference after my own fight. This might help you feel like you are not alone and one can only keep fighting for the Quality in their Lives that we all so deserve.
Tara

manna1qd

I have not had the surgical complications but sometimes I look at my mediation list and think it belongs to a ninety year old! I am sure we all know about one medication's side effects leading to another medication. That's if you can't ignore it or go a more natural route. I get tired of making appointments to deal with side effects, mail ordering another supply of medications, remembering the new schedule, counting out pills every day etc. This is minor compared to what you are going through and I hope in a few weeks, some of your situations are more routine or resolve for you. I still fantasize about being medication free at age 50.

It seems like every system
needs a tune up. Having gone through menopause early, I can tell you I have a brain and bones to prove it! It seems like one new symptom after the other. More appointments, medication, tests...

I recently had a biopsy on my remaining breast. The results were good but it was scarey and time comsuming to get that done.

Besides getting organized,
Someimes I mentally make a list of what is right with this body and focus on it, appreciate it, use it etc. I also, recently made a commitment to changing the focus of my career. It will give me a shorter day, a job I can leave at work and every weekend and holiday off as well as a summer vacation. It leaves an abundance of time I would not otherwise have to attend to my own spiritual, emotional and physical well being. The stronger the first two are, the better I handle the last one.

A big hug to you from me hope our responses help.

survivor51

I'm so glad you shared. I am turning 52 and thought I was alone out there. I have finally rejected all test right now and seeing an acupuncturist to heal emotionally. I have to be strong for the rest. I'll keep you in my prayers and reach out to friends.

KathiM

Aw, dear, brave soul! Sometimes, being a semi-colon is not a bit of fun!!!!!!!

I was just speaking of this to one of my patient partners yesterday....altho, unlike you and I, she has only (thank God!) the colon cancer 'under her belt'. I will share what I told her: it gets ME thru the night...(almost all the time, anyway).

For whatever reason, we cancer survivors want so desperately to return to the life we had before the surgeries, the chemo, the radiation changed our bodies. Unfortunately, there is not way completely back. Actually, I wear my victories over the beast (rectal, followed by breast for those who don't know) publically....my 'new' grown-back hair has my 'gold and silver medals' in it....I will never color it out!!! I am honest in situations where I need help...using a restroom in an establishment where I don't buy anything, for instance, I find the 'keeper of the keys' and say "I have a favor to ask. I am a colorectal cancer survivor, having lost my storage facility (rectum). I LOVE leading a public life, but it come with a cost that when I need to go, I NEED to go...could I use your facilities?" I have never been turned down.

From the breast cancer treatment, my heart was damaged (probably permanantly, they are now thinking), and my lung under the breast also affected. Some days are not good, but one thing I have decided upon, and I will fiercely defend:

Cancer got 1.5 years of my life, it will get NO MORE!!!! I will live each day as a gift, and find something, however small, to smile about. If I should face the beast again, well, I will think about it then...in the mean time, I will live my new life, laughing, caring about people, and giving myself a break, for even tho I am a member of the 'walking wounded', I have endured far greater pain and suffering than most of the people alive today!

Hugs, kathi

3cbrca

unknown said:

Good Lord, Sheila!
I lost both breasts to cancer (at different times) but my after-effects are so minimal compared to yours that I can't begin to advise you in any constructive way.
All I can say is that it seems to me you are doing all the right things, thereapy, staying involved in life, taking good care of yourself.
God bless you dear. I hope we can help you cope in some way. Join us in the chat rooms if that is your 'thing'.

As you can see by my rant, I've discovered I'm not a chat room person - I don't just write in paragraphs - I speak in paragraphs...Thanks for your kind thoughts.

3cbrca

manna1qd said:

I have not had the surgical complications but sometimes I look at my mediation list and think it belongs to a ninety year old! I am sure we all know about one medication's side effects leading to another medication. That's if you can't ignore it or go a more natural route. I get tired of making appointments to deal with side effects, mail ordering another supply of medications, remembering the new schedule, counting out pills every day etc. This is minor compared to what you are going through and I hope in a few weeks, some of your situations are more routine or resolve for you. I still fantasize about being medication free at age 50.

It seems like every system
needs a tune up. Having gone through menopause early, I can tell you I have a brain and bones to prove it! It seems like one new symptom after the other. More appointments, medication, tests...

I recently had a biopsy on my remaining breast. The results were good but it was scarey and time comsuming to get that done.

Besides getting organized,
Someimes I mentally make a list of what is right with this body and focus on it, appreciate it, use it etc. I also, recently made a commitment to changing the focus of my career. It will give me a shorter day, a job I can leave at work and every weekend and holiday off as well as a summer vacation. It leaves an abundance of time I would not otherwise have to attend to my own spiritual, emotional and physical well being. The stronger the first two are, the better I handle the last one.

A big hug to you from me hope our responses help.

Your responses do help - I really relate to the medication list. On the news they made mention of the number of presriptions found by the movie star that recently died. I've gotten so jaded - only six? I use a med box for keeping track - otherwise I can't remember if I took them - One week I put Rozeram (sleeping med) in instead of my Aromasin - similiar bottle. Luckily Rozeram doesn't work very well and I discovered it after a couple of days.

3cbrca

phoenixrising said:

Dear Sheilah,

Life sure can get complicated fast. You are not having a good day and that is totally understandable. If my husband is any judge you have had a particularly painful type of cancer. He had colorectal ca in 2003. They removed his rectum. Due to the location of his plumbing he wasn't able to get the J pouch and he will never eat normally. If he tries he pays for it severely. And he loves food!

You probably know this but opioids can cause ileus which prevent the bowel from moving and looks like a blockage on the x-ray. So painful he would be delirious. Codeine is an opioid. Tylenol 3 contains codeine. I only say this because it has prevented my husband from more surgeries as not all surgeons know about it or take it seriously. It shows up on the x-ray as a blockage. My husband has had numerous ileus attacks and refuses now to see a doc about it or go to the hospital. Senna reverses the opioid effect. When he thinks he's having an attack he will take senna. He had to go off the tylenol 3's but remains to this day on opium and belladonna suppositories which have been a saving grace for him. A lot of docs didn't know about that either. It's an old remedy. He uses only what he has to and if he feels an attack (at little like indigestion) he takes the senna. The opium is for pain and the belladonna has a paralyzing affect so he doesn't have to go constantly since he doesn't have a holding pouch.

I'm not sure what ongoing problems you are having with your bowel but my hubby uses flax/bran mixture, to neatly wrap the package up. O&B supps for pain and frequency. We have also used tannic acid to slow things down, found in tea, strawberry/raspberry leaves.

It's hard when our self image is totally shattered. From healthy, fit and vibrant to disease, operations, medications, complications. You asked what we do to help make it through. I focus on health and strength and try and keep it at the forefront. Picture and desire it. It then seems easier to make choices that bring it to us. Exercise has made a difference in how I feel mentally and physically. I will do something spiritual to help me get connected. For me I've always resonated with native "religion/philosophy" so I will burn a combo of cedar, sweet grass and sage and give a tobacco offering. For others maybe church or reading a favorite passage of the bible might help. Visiting a friend sometimes clears things up. If all else fails I get "p#$%d and get on the internet and try to find natural solutions to my problems so I don't continue to fall down this bottomless pit. At least then the adrenalin is flowing and I feel like I have some control. I like to fool myself once in a while. And sometimes it's just the meds we are on. I've run out of tamoxifen and am starting to feel great. Sleeping through the whole night which gives me more energy and a better outlook the next day. But I will have to resume taking it soon:-(

For me I am grateful to not be working at this point and can focus on doing what I need to do to improve my situation without being stressed out about work. They won't curl up and die without me. Almost but not quite

I'm sorry I can't help you with the lymphedema as I wouldn't let them take all my lymph nodes and I refused rads. Something I may regret in the future. I know some of the gals here will be able to give you better info concerning these things.

And Sheilah, some days life sucks and we don't feel grateful. And that is OK. But it does pass.

If you would like to talk just email me your phone # and I would be happy to give you a call.

I sure do talk a lot don't I?

Hope things brighten up for you

jan

I avoid pain meds like they are broccoli although I had to take them on and off during treatment. off the lomotil as well (opioid).

Talk a lot?- you haven't met my family! I have some test results back - it turns out that hypothroidism can cause an Ileus (frozen bowel) and they discovered a small hernia around the incision area! You're right some days just suck and that's why I love this site - I wrote my rant after getting the thyroid news from my doctor! My attitude is so much better today. I've started medication. I know it takes a few months to get to normal, but I'm really excited to have the problems identified and once again getting back to my new normal!

Thanks so much
She

3cbrca

24242 said:

If you go to my personal website there is a speech that I gave to a Living Well With Cancer Conference after my own fight. This might help you feel like you are not alone and one can only keep fighting for the Quality in their Lives that we all so deserve.
Tara

Thank you Tara - I'll will definitely check it out!

3cbrca

survivor51 said:

I'm so glad you shared. I am turning 52 and thought I was alone out there. I have finally rejected all test right now and seeing an acupuncturist to heal emotionally. I have to be strong for the rest. I'll keep you in my prayers and reach out to friends.

You might ask your acupuncturist about "healing touch massage" - I'm doing it at least twice a week and on good days or bad, I always leave feeling better than when I arrived.

3cbrca

KathiM said:

Aw, dear, brave soul! Sometimes, being a semi-colon is not a bit of fun!!!!!!!

I was just speaking of this to one of my patient partners yesterday....altho, unlike you and I, she has only (thank God!) the colon cancer 'under her belt'. I will share what I told her: it gets ME thru the night...(almost all the time, anyway).

For whatever reason, we cancer survivors want so desperately to return to the life we had before the surgeries, the chemo, the radiation changed our bodies. Unfortunately, there is not way completely back. Actually, I wear my victories over the beast (rectal, followed by breast for those who don't know) publically....my 'new' grown-back hair has my 'gold and silver medals' in it....I will never color it out!!! I am honest in situations where I need help...using a restroom in an establishment where I don't buy anything, for instance, I find the 'keeper of the keys' and say "I have a favor to ask. I am a colorectal cancer survivor, having lost my storage facility (rectum). I LOVE leading a public life, but it come with a cost that when I need to go, I NEED to go...could I use your facilities?" I have never been turned down.

From the breast cancer treatment, my heart was damaged (probably permanantly, they are now thinking), and my lung under the breast also affected. Some days are not good, but one thing I have decided upon, and I will fiercely defend:

Cancer got 1.5 years of my life, it will get NO MORE!!!! I will live each day as a gift, and find something, however small, to smile about. If I should face the beast again, well, I will think about it then...in the mean time, I will live my new life, laughing, caring about people, and giving myself a break, for even tho I am a member of the 'walking wounded', I have endured far greater pain and suffering than most of the people alive today!

Hugs, kathi

Thanks Kathi

I'm still following behind you. Today I'm back to my old self - I have a small incisional hernia and an ileus (frozen bowel) from the thyroid damage. I've started medication and I'm really excited that I have some answers and can start moving forward!! I started a new excercise class for breast cancer survivors only this week and I'm already having fun.
Sheilah

Skybuf

Dearest 3C....well as you know I'm in this with you......all the way girl. I am going for my bilateral this Monday 28th, my choice this time because the prosthesis is way too heavy and like a harness hanging around my neck, pulling me down. So my option is to have it off and reconstruction sounded too negative for me due to the damage caused by radiation...also to the heart and lungs. I TOO have lymphedema and go for MLD manual lymph drainage now...it's expensive $70.00 a hours treatment but I have no choice as you know, very important to have it done, I too do it myself in the am and before bed. I am wearing two sleeves also, a white soft liner one first then that tight stocking thing...man it's hard to get on and it's a loaner so not my right size, which dosen't go up to the top of my arm and causes a buldge at shoulder, mercy it hurts. I have to travel far to get fitted for one and with my surgery coming up must wait til I'm better.
Meds, I take em all too, nasty sometimes what they do, but they do good too they say.
I found out just before Christmas I have a Venious (sp) floater and flashing in my left eye, my neuropathy feet still bother me big time, I ripped my big toe nail off after just getting them back after chemo (Taxol)
Energy or the lack there of seems to get me down the worse now, seems I have to rest between making breakfast and doing the dishes now, everything I do, I have to take 5 after it so I can carry on, Thank God I am retired now and don't have to get ready for work, I just retired and last year was hell on wheels.
But 3C ya know girlfriend, we ARE here and we WILL get thru this...together.....with prayer, and faith and taking the best care of US we can.
I thank God everyday I wake up now....for all the good things that happen and like you I keep so busy I haven't time to think about me sometimes.
So hang in there my friend, and if you want to talk more I am willing, e-mail me or call if you want to, I'm here....love and hugs to you, chat soon

3cbrca

Skybuf said:

Dearest 3C....well as you know I'm in this with you......all the way girl. I am going for my bilateral this Monday 28th, my choice this time because the prosthesis is way too heavy and like a harness hanging around my neck, pulling me down. So my option is to have it off and reconstruction sounded too negative for me due to the damage caused by radiation...also to the heart and lungs. I TOO have lymphedema and go for MLD manual lymph drainage now...it's expensive $70.00 a hours treatment but I have no choice as you know, very important to have it done, I too do it myself in the am and before bed. I am wearing two sleeves also, a white soft liner one first then that tight stocking thing...man it's hard to get on and it's a loaner so not my right size, which dosen't go up to the top of my arm and causes a buldge at shoulder, mercy it hurts. I have to travel far to get fitted for one and with my surgery coming up must wait til I'm better.
Meds, I take em all too, nasty sometimes what they do, but they do good too they say.
I found out just before Christmas I have a Venious (sp) floater and flashing in my left eye, my neuropathy feet still bother me big time, I ripped my big toe nail off after just getting them back after chemo (Taxol)
Energy or the lack there of seems to get me down the worse now, seems I have to rest between making breakfast and doing the dishes now, everything I do, I have to take 5 after it so I can carry on, Thank God I am retired now and don't have to get ready for work, I just retired and last year was hell on wheels.
But 3C ya know girlfriend, we ARE here and we WILL get thru this...together.....with prayer, and faith and taking the best care of US we can.
I thank God everyday I wake up now....for all the good things that happen and like you I keep so busy I haven't time to think about me sometimes.
So hang in there my friend, and if you want to talk more I am willing, e-mail me or call if you want to, I'm here....love and hugs to you, chat soon

Hi Buffy
Thanks so much - Until you get a sleeve that fits - I have a couple of them - one has the hand guantlet and it hurts my arthritis in my thumb (makes it numb) The other one is too tight around the upper arm. The glove also hurts my thumb. They told me to wet the part of the sleeve that feels to tight and painful and then put it over some larger than my thumb joint and let it dry. I strech the top of my sleeve over a small coffee can and my thumbs in my glove and gauntlet over the fat end of a turkey baster or a small round cosmetic bottle - it does help. Best of luck on the surgery. When I get through my current messiness I hope to get mine too. I've quit wearing the $600 protheses and I just wear the light weight ones they gave me for swimming. They ride up and by about noon they are sticking out of my collar bones but they don't hurt like the heavy ones! I'll be thinking of you!

Skybuf

3cbrca said:

Hi Buffy
Thanks so much - Until you get a sleeve that fits - I have a couple of them - one has the hand guantlet and it hurts my arthritis in my thumb (makes it numb) The other one is too tight around the upper arm. The glove also hurts my thumb. They told me to wet the part of the sleeve that feels to tight and painful and then put it over some larger than my thumb joint and let it dry. I strech the top of my sleeve over a small coffee can and my thumbs in my glove and gauntlet over the fat end of a turkey baster or a small round cosmetic bottle - it does help. Best of luck on the surgery. When I get through my current messiness I hope to get mine too. I've quit wearing the $600 protheses and I just wear the light weight ones they gave me for swimming. They ride up and by about noon they are sticking out of my collar bones but they don't hurt like the heavy ones! I'll be thinking of you!

3Cbrca....girl your too funny...you made my day as I laughed when reading your reply, it's exactly what happens when we wear the 'swim' prosthesis....I could visualise it riding up...LOL
I too wear the swim form instead of the heavy thing it's much lighter and airy eh! See thru too, that's about a 10 and that's the size I want to be after surgery. Right now I have 2 size 14's they had trouble getting and they are both too heavy. I put them to bed tonight in their coffin boxes....good riddens!
Mercy sounds like a hasstle when I get my gauntlet sleeve, turkey basters and cosmetic bottles, and medicine bottles, girl your a hoot! hahaha
Anway thanks for the good advise, I need a sleeve that will go right up to the shoulder too, that's where the lymphedema is.....a big ole lump and tight and painful. Well wearing those sleeves sure help and the MLD.....thank God for help eh!
Love and HUGS
Buffy

122456

KathiM said:

Aw, dear, brave soul! Sometimes, being a semi-colon is not a bit of fun!!!!!!!

I was just speaking of this to one of my patient partners yesterday....altho, unlike you and I, she has only (thank God!) the colon cancer 'under her belt'. I will share what I told her: it gets ME thru the night...(almost all the time, anyway).

For whatever reason, we cancer survivors want so desperately to return to the life we had before the surgeries, the chemo, the radiation changed our bodies. Unfortunately, there is not way completely back. Actually, I wear my victories over the beast (rectal, followed by breast for those who don't know) publically....my 'new' grown-back hair has my 'gold and silver medals' in it....I will never color it out!!! I am honest in situations where I need help...using a restroom in an establishment where I don't buy anything, for instance, I find the 'keeper of the keys' and say "I have a favor to ask. I am a colorectal cancer survivor, having lost my storage facility (rectum). I LOVE leading a public life, but it come with a cost that when I need to go, I NEED to go...could I use your facilities?" I have never been turned down.

From the breast cancer treatment, my heart was damaged (probably permanantly, they are now thinking), and my lung under the breast also affected. Some days are not good, but one thing I have decided upon, and I will fiercely defend:

Cancer got 1.5 years of my life, it will get NO MORE!!!! I will live each day as a gift, and find something, however small, to smile about. If I should face the beast again, well, I will think about it then...in the mean time, I will live my new life, laughing, caring about people, and giving myself a break, for even tho I am a member of the 'walking wounded', I have endured far greater pain and suffering than most of the people alive today!

Hugs, kathi

Thanks for that message. Every since yesterday after I was told about a small lesion on my lower left part of my brain and now radiation again. I'm ready and you know one day I just wanted to be my old self again. But I know God has a plan for me as the new Pat. I'm living and loving more people. Not getting angry about the least little thing so I'm enjoying the new Pat. Cancer has been with me since 2003 and it will not get the best of this old southern gal!!!!