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question about internal pain

LaCh
Posts: 509
Joined: Dec 2012

Has anyone experienced internal pain (not external) that's more or less constant (worse when I "go" but never really gone) starting at the end of week 2?  My radio oncologist says that it can't be from the radiation and this seems absurd to me.  Has anyone had more or less constant internal pain after week 2?

qv62
Posts: 235
Joined: Nov 2012

I have not been treated with radiation, only surgeries but have had internal pain and it turned out to be a fisture, I have had this twice, the first time I needed a surgical repair, the second time it seemed to heal on it's own, ask your doctoor if you may possibly have a fisture ?

Fergie22
Posts: 4
Joined: Jan 2013

My father started chemo and immediately following experienced unbelievable internal pain. He's been suffering for over two months. It's definitely chemo related, because he has lymphoma - has had many biopsies in anus and above, and all were negative. We have not found any relief, and he's tried multiple pain meds as well as creams and ointments. Outside skin comes and goes in terms of sores and pain, but inside is the worst! Good luck to you for some relief!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I am thinking of you this morning as you go for your next to last treatment.  I hoping you had a restful weekend and are ready to seize the next 2 days, then let the healing begin!

LaCh
Posts: 509
Joined: Dec 2012

Thank you MP,

The weekends are more of a psychological break rather than a physical one, since the days off are just as hellish as the days on treatment. This weekend was no different and one exquisitely painfuil moment just bleeds into the next. That said, tomorrow is the last treatment, for which I'm VERY happy.  I don't expect to feel any change in the pain for a while since I've already had several three-day weekends away from treatment without any letup in the pain, but still, simply knowing that I'm done will be a huge mental boost.  The tech looked at the stuff oozing from the burns (now 2nd degree) and said that it's normal goop from the skin beaking down, not infection so I've rescheduled my appt with the gastroenterologist from tomorrow to Friday (she was going to look at the burns).  I have nothing left, not a drop of energy, strength, nothing, I can't walk anywhere, not even the few blocks to her office and tomorrow's weather will make catching a cab difficult, if not impossible. The one bright spot during the weekend was a massage that I got at the Sloan Kettering Intergrative Center.  It was an enormous help in easing the pain which now permeates every cell of my body and every moment in the day (I'm not experiencing anything different from anyone else who visits this website, which isn't lost on me).  If the massages weren't so expensive, I'd do it more often, as the benefits, although short-lived, are just huge.  I couldn't even speak when I arrived and was able to smile when I left.  So this time tomorrow, and I'm done, done, done done, DONE.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

You are correct--finishing treatment does not allow the physical pain to immediately vanish, but it is certainly good for emotional healing.  Just knowing you are done will will be very uplifting, as it was for me.  The massage sounds wonderful and a good bit of advice for others to try if they have the means.  One more day--I am very happy for you.

LaCh
Posts: 509
Joined: Dec 2012

thanks......

pializ
Posts: 255
Joined: Nov 2012

Hi there!  I have tried to post several times but for some reason it won't let me submit, but will try again.  I finished treatment last Friday & just so pleased I can stay at home & indulge in relaxingbecause I have no appetite nor energy.  This too will pass & looking forward to getting a bit of me back. You sem to have had a rough journey & I will be so pleased for you completing treatment.  Like everyone tells me, be kind to yourself.  We will get there

Liz x

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Congratulations on finishing your treatment!  I am so happy for you and hope that your recovery will be quick.  As time passes, you will notice little improvements--each to be appreciated and celebrated!  Soon things will be so much better, so just hang in there and take good care of yourself.

pializ
Posts: 255
Joined: Nov 2012

Hi there!  I have tried to post several times but for some reason it won't let me submit, but will try again.  I finished treatment last Friday & just so pleased I can stay at home & indulge in relaxingbecause I have no appetite nor energy.  This too will pass & looking forward to getting a bit of me back. You sem to have had a rough journey & I will be so pleased for you completing treatment.  Like everyone tells me, be kind to yourself.  We will get there

Liz x

LaCh
Posts: 509
Joined: Dec 2012

Pializ,

Yes, this website is often difficult to post to., difficult to log onto and difficult to navigate.  Although I have an appetite, I'm eating only eggs, bread, ice pops, water (three liters a day) and chicken broth, simply because going to the bathroom after eating anything else is painful to the point of desiring a quick death from a heart attack. I share your feeling of no energy; simply getting into a cab, going to treatment, getting back in a cab and coming home exhausts me for the rest of the day.  Talking on the phone is exhausting, walking more than a block is exhausting, pretty much everything is either exhausting or painful or both, so I'm looking forward to not having to go and do anything (and for me, "anything" only means treatment).  Wednesday is already looking sweet.  Congrats on finishing your treatments.  I'm right behind you.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

LaCh: You are a strong person; I could never have done what you have done by myself. I remember feeling exactly as you do right now, exhausted, too exhausted even to talk, no appetite, horrible burn pains. So glad you only have one more treatment. I'm glad you found something to help you - the massage. ANYTHING that makes you feel better will help.  I've been reading your posts; of course there is nothing any of us can do to make it easier; just know that my thoughts are with you and I'm glad you're almost done with the treatments.

pializ
Posts: 255
Joined: Nov 2012

Hi there!  I have tried to post several times but for some reason it won't let me submit, but will try again.  I finished treatment last Friday & just so pleased I can stay at home & indulge in relaxingbecause I have no appetite nor energy.  This too will pass & looking forward to getting a bit of me back. You sem to have had a rough journey & I will be so pleased for you completing treatment.  Like everyone tells me, be kind to yourself.  We will get there

Liz x

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Pializ: I'm so glad you are finished treatment. Rest and take care of yourself. Seems like the Drs. don't tell you much (they didn't me anyway) about recovery. It takes a while, but at least you have all the treatments behind you and you are on that road to recovery. Your friends and family are your best allies; lean on them now. My best to you. Smile

LaCh
Posts: 509
Joined: Dec 2012

man! You sure got THAT right!  Tell me things? These guys are as tight-lipped as the prisoners in Guantanomo.  It's been a real irritant to me.  My feeling is, Your job is to impart to me all the information at your disposal so that I can make informed decisions.  So that I can make them, whether they're the decision s that you think I ought to make or they're not, they're mine to make. Don't patronize me by withholding information, don't manipulate me toward one decision or another by telling me some things and withholding others. Well, in any case, that's just me but yes, I agree, information isn't readily forthcoming from any of these guys.  I'm hoping for relief from the pain soon, but don't really expect it soon. That said, just finishing the treatments will be a huge psychological boost. Right now, my time consists of waiting till I can take my next dose of oxycondone (which kind of freaks me out). But 15 hours from now, I'll be done with this little chapter of my life, that is, the treatment chapter.

Marynb
Posts: 1134
Joined: Aug 2012

Congratulations on finishing your treatments! Each day for you now will just get better and better. Healing from this treatment is surprisingly quick. Make sure you get plenty of rest, eat plenty of protein, and stay hydrated. I wish you both good health!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Today you cross the finish line!  I'm proud of you for hanging in there and in awe of your strength to go through this alone.  You will soon be able to look back on this and realize just how amazing you are!  Get some rest and begin the healing!

LaCh
Posts: 509
Joined: Dec 2012

DoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDoneDone

DONE!

Now I have to get the burn infection under control, the pain, the bowel issues, the entire package of benefits....  but I am freaking ¡DONE!

I sincerely thank all who gave their generous words of support and for theior constancy.  As for doing this alone....  there really wasn't anything anyone could have done for me anyway. This is a solitary thing, no matter how much someone might want to lighten the burden and to have someone here with me would have been an added layer of stress. I'm a solitary person by nature and solitude is comfortable (and sought after) for me; I love my lifestyle and wouldn't trade it for anything.  As for "getting it done" alone, you just do what needs to be done, whatever "it" is at the moment.  I don't even think about it, really.  In any case, despite the pain which is still off the charts, despite the infection that seems to have developed (antibiotics on the way), despite the bowel issues that must resolve for me to regain a good quality of life, despite all the unknowns that will only be revealed in time, I am happy today.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Congratulations!

Phoebesnow
Posts: 447
Joined: Apr 2011

Congratulations.   So happy you are done!   

AZANNIE
Posts: 371
Joined: Mar 2011

Congrats on completing treatment! Whew! Let the healing begin!

 

 

LaCh
Posts: 509
Joined: Dec 2012

Thank you all, sincerely, for your unflagging support....  it was and is very appreciated.

mxperry220
Posts: 349
Joined: Mar 2011

Hopefully the sorst part is behind you.  Now for the healing process.  Do not get discouraged by BM issues.  It gets better through time but you may have a new "BM norm" if you are like me.  My norm prior to treatment was 1-2 times daily.  After 4 years post treatment my new norm is 3-4 BMs daily.  I take 3 immodium daily.  The doctors said they are not harmful.

Mike

jcruz
Posts: 206
Joined: Jan 2013

I have been following your posts and I'm so glad that you made it through the treatments and you are DONE with that part of this business.  I remember my last treatment day in October, so glad to shuffle out of the rad onc's office and go home to be alone in my happiness at being done and my sadness and misery with the pain, etc.  I so relate to what you said about a solitary life - me too.  I am eternally grateful to my friends who drove me to all my appts. and who called to see how I was doing but for the most part I wanted to be alone just as I usually am.  I echo the advice to stay hydrated - I think I needed hydration more the week after treatment ended that at any other time.  I wondered for quite a while as I was beginning to heal if I would ever regain a good quality of life.  It feels like it has taken a long long time for me to say I am getting close to my old self now.  I'll say I'm close but I'll never be quite the same as I was before.  So happy to have my health returning, happy to notice that my butt doesn't scream with pain the way it did a few months ago, looking forward to knowing that I can sit long enough to go to the movies (alone!), almost looking forward to returning to work just because it is so normal.  Still worried, still dealing with fatigue and digestive issues - both are better but not like "normal" but happy to know my treatment worked, happy to know that I did it and today I am very happy for you.  I wish you well as you heal and find your way back to your life.

 

Marynb
Posts: 1134
Joined: Aug 2012

Yay!

pializ
Posts: 255
Joined: Nov 2012

So pleased you are done!

How did we, any of us, get through this? My work colleagues have been in touch periodically, and they think I have done amazingly well. I suppose that is relative & how exactly can we begin to say how it really is? My line manager asked yesterday 'how was treatment'. I could only reply 'I can't quite put it into words'! & because we haven't had an operation, I'm sure some think it is a walk in the park........ Well, we KNOW differently, & whatever the follow up tests show, we must be pretty strong to endure this barbaric treatment.

The pain when urinating has dramatically worsened since treatment finished last week. I get diarrhoea with cramps if I don't take my co codamol regularly. I guess that is the radiation enteritis. I must explore other methods of controlling it once I no longer need pain relief. The codeine does a fantastic job of managing it at the moment (as I say, when taken regularly). I still take domperidone for nausea and an antihistamine that helps to manage the irritation side of being burned.

But we made it!!! We really made it!

Liz x

LaCh
Posts: 509
Joined: Dec 2012

Thanks Pializ.

Yes, I've heard the "you're so strong," comment as well and I never know quite how to respond. I don't feel strong and I don't feel "weak," I just feel like someone who decided to treat the tumor and then did it.  Of course, as you can attest yourself, the story is far from over when the treatments end, and my doubts about whether I did the right thing in treating it won't be answered until the entire thing comes to rest.  My burns are infected and my pain is poorly managed. Residual, long-term pain, residual long-term bowel problems, residual, long-term effects from radiation are quality of life issues, and for me, life at any cost isn't what I would choose. I'm just hoping that I emerge from this with a good quality of life.  Quantity of years takes back seat to quality of life for me, but these are questions that only time will answer.  Like you, when asked, "how is treatment?" I've come to see that no answer can adequately convey exactly "how" this treatment is, because to describe pain to someone who doesn't experience it, isn't possible, just as describing the taste of chocolate to someone who's never tasted it is equally impossible.  And even within a group of people who have the same tumor and the same treatment, each person's experience is different. There are similarities, to be sure; that's why speaking to other people in the same situation is helpful. But there are individual differences because we're individual people.  I'm very happy that the treatments are over. Now to deal with the after-treatment issues, because "over," doesn't quite mean over, as everyone who's gone through this knows.  I hope that your issues resolve, just as I hope that mine do and everybody's does.  I hope that one day, western medicine pursues other methods to control cancer, other than this extremely damaging, life-altering, way. To nearly kill the patient in order to kill the tumor seems like lunacy to me, and one day in the future, I think, people will look back at how this and other cancers were treated and wonder, "What on earth were they thinking?"

eihtak
Posts: 809
Joined: Oct 2011

You sure did make it! It is soooooo tough at times but something just keeps us going. I guess at some point we just don't really have a choice. When faced with sink or swim, we mostly swim!

Recovery is also difficult unfortunately, but at least one doesn't have to keep going back for more full knowing the pain it will cause. Healing will come sooner than you think. I remember by the time I had finished I was in a nursing home ( colostomy issues ), I was hurting so bad in several ways, then it was like one day I woke up, still had burning with urination, but felt amazingly like I was ok. I showered, got dressed, and was smiling all day! Its turning that corner that some have mentioned.

Two years later I am still moving forward. I am different in some ways than I was before, but not different bad, different better! I think recovery at this point for me is still happening, but it has just become my way of life.

Congratulations again on making it through this so very difficult part of this journey. My prayers are with all for continued strength and health.

LaCh
Posts: 509
Joined: Dec 2012

Thanks eihtak,

Well, I think that for my part, what kept me going was simply that I'd already decided to treat the cancer.  I also decided before it began that the chemo and radiation would either cure it or not (I expect that it will) but that if it didn't, I wouldn't pursue surgery or any other further treatment (to my knowledge, the only "further treatment" is a colostomy). I still feel the same, although as I said, I expect a cure and I'm not worried about it.  Your words are very encouraging; yes, I hope that recovery will go quickly and await that day when I wake up and say, "Hey, wait a minute. Something's different.  I don't feel like sh*t any more!"  I'm already looking forward to the spring and a cousin and I are making plans to celebrate our mutual 60th birthdays in 2013 by going to Disney World, probably some time in the fall.  I'm hoping NOT to still have an evolving recovery two years out.  I want to go to the beach this spring and not worry about being far from a bathroom. I want to return to Spain i a year or so, which entails a 7 and a half hour plane trip, a 5 hour train ride inside Spain and meals and activities far from bathrooms. I don't want to sweat it each time I eat or worry that I'm too far from a bathroom.  I don't want to worry about bathroom visits that also require a towel to cover my mouth so that no one hears me scream. More immediately, more modestly and simply, I don't want to dread each trip to the bathroom like I do now. I want to be abe to take my dog to Central Park in the spring and not worry about bathroom issues. I want to be stong enough to hike again.  These are quality of life issues for me and I sure don't want a return to those things to be years-long work in progress.  I don't want it to become my new way of life. That would make me question my decision in treating the tumor.  I sincerely thank you for your "congratulations" and good wishes, as I thank everybody who has expressed the same.  The reason that I initially sought this website was because I wanted to hear from people who had experienced this tumor and this treatment, a source of information based on personal experience, not academic, intellectual information from a physician who mignt say, "Yeah, I know that you have pain,"  when in fact, they had not the remotest idea of what that actually meant.  I found what I was looking for and it's been as helpful as I hoped it would be.

eihtak
Posts: 809
Joined: Oct 2011

No comment....just smiling at you!

pializ
Posts: 255
Joined: Nov 2012

I too am 60 this year (13th May).Your attitude to cancer & it's treatment stronglyvreflect mine.  I have never been angry that I got cancer,  justvwt the barbaric treatment in 21st century. My oncologist ids young & I told her that I hope she sees some radical changes to treatment in her proffesional lifetime. I I do hope your burns and infection are soon resolved. I must say that I have found my urinating into a portable bidet filled with water helps, then filling bidet with fresh salted water has been my mainstay of skin care  As for walking you dog in Central Park...... I so wanted to spend moectime walking there back in 2005, but it was cold & time was short so wectook the horse/carriage ride....very disappointing. Maybe I will get hwck tthere another day. My daughter & her boyfriend are going in April.

Take care!  Liz x

 

LaCh
Posts: 509
Joined: Dec 2012

Pializ...

Well, my take on cancer was and is, "things happen."  I don't get angry at things that happen unless someone's actions are behind it, unless someone is responsible  and in the case of cancer, it's just one of those things that "just happens."  Asking "why me" always seems like a ludicrious question and maybe a more reasonable question would be "Why NOT me?"  "Why me" implies a reason behind the question (as in "what did I do to deserve this?") which to me seems equally silly. People don't do things that deserve or don't deserve cancer, cancer just happens, just as flat tires and lost umbrellas and all manner of other things "just happen," and I don't read anything into it just as I don't read anything into loosing my umbrella or getting a flat tire.   Cancer was a problem that had to be dealt with, so I did. Bad things happen to good people just as good things happen to bad people, good and bad things happen to all manner of people because things just happen and to look for deeper meaning behind them seems like a useless and illogical endeavor to me becajuse answers simply won't be forthcoming (this is just my opinion and I understand that everybody has their own and may not share mine). There are, however, an almost limitless number of ways in which one can respond to life's circumstances, including cancer and that's the real question. How will  I respond? Will I carry myself with dignity? With kindness? Or will I lose it and lash out, or ask questions for which there are no answers? Those are the important things to me. Well, anyway, that's just my take. Like you, however, I have no respect for western medicine in all its arrogance and barbarity. We're great at technology, we have technology dripping from the walls but aside from that, western medicine is rather harsh and unsophisticated. I've said on this website more than once that the Hypocratic Oath to First do no harm seems to have been lost to antiquity and doing harm now seems quite ok if it's done for a higher purpose and if those doing is deem it worthwhile (something that they decide, not the person undergoing "the cure").  The result is a life-changing treatment with side effects that can last for the rest of that person's life that no one tells you about at the outset, not even when asked directly.  Knowing about them might influence some people's decision to pursue a cure and for some it wouldn't influence it at all, but that's as it should be. It's a decision that each person has the right to make as an individual in charge of his or her own body, but when the doctors withhold information,  the ability to make an informed decision is no longer possible. So for me there are issues of western medicine itself and issues about those who practice it. I think that there are other avenues of disease management that can be explored but they're not nearly as lucrative as an expensive radiotherapy machine (sometimes, just because you can do a thing, doesn't mean that you should do that thing) and although I enter into a doctor/patient partnership with an open mind, I almost always end up in the same place; disappointed, frustrated, angry, and with an utter lack of respect for the doctors in all their arrogance and patronizing.  Are there exceptions?  Well, of course, there are always exception, and in my case there's one. My gastroenterologist. But one in 59 years isn't a real good track record, not for them and not for me.  Anyway, unlike you, urinating for me isn't a problem (maybe the anatomy is different, I don't know).  But bowel movements rank up there with medieval torture.  As for exploring Central Park, I take it you're from out of town? The best was to explore Central Park, a place I've spent my lifetime in and to this day, spend a lot of time in, is to come in the spring or the summer and explore it on foot. The south end is different from the north end, the west side is different from the east side and there's something to discover in every corner. During the winter, unless you love the cold, it's pretty uninviting but during the spring and summer, it's like an enchanted, magical kingdom. And I say that as a 59 year old, extremely jaded, cynical, native New Yorker who  doesn't have much good to say about NYC in general.  But there's a magic cloud that hangs over Central Park during the spring and summer and it rains enchantment onto Central Park, it makes the flowers and trees grow, and everything under its spell feels it and radiates it.  The hansome cabs rides serve only to empty your pockets; get out and walk if you can, and you'll see and hear things that will stay with you forever.  Ask my dog; he knows all this too.

Kraut
Posts: 22
Joined: Nov 2012

Congratulations on being done with the treatments.  Hoping your healing will happen quickly as it did for my husband.  Oh don't get me wrong he still has  issues 3 months out.  At least he is not sitting on the john wiping tears instead of dabbing at his bottom.  As a care giver this just totally tore my heart out as I felt so helpless.  Yesterday he had his first Pet CT scan post treatment, tomorrow we go in to meet with the oncologist & radiologist for the results.  We expect good news for the cancer to be gone, also being told everyone is different to all of our other questions.  You are so right it is barbaric, arrogant treatment for the 21st century, shamefully I see no changes coming in the near future.  May have something to do with our religious believes as we have that in common with you.  Enjoy the quiet company of your fur kid, ours sure put smiles on our faces daily.

LaCh
Posts: 509
Joined: Dec 2012

Hi Kraut,

Jeeze, issues 3 months out isn't very reasurring.  These are the questions that I wrestle with when I ask myself if I made the right choice in treating this tumor. I'm in the minority on this website, and no doubt, with the public at large, but life at any cost is not what I want. Quality over quantity is what I value. My feeling is that I'm not going to have the PET scans that are recommended for me since I have no plan to treat any cancer that remains, although I'm willing to have follow-up biopsies; they're less toxic.  I'm not sure what religious beliefs we have in common, exactly, since I don't believe in God and am affiliated with no organized religion; I do, however, believe in the cycle of reincarnation but don't consider that to be a religious belief, but simply the way that the universe works.  And yes, my dog is my best friend/ best companion/most dear to me in the whole world and having him here with me, inconvenient though it is at times, has been a gift, a comfort and my salvation.  As for the sorry state of 21st century western medicine, self-congratulatory though it is, yes, one day people will look back and say, "Say what????  They did what????"  I hope your husband continues to heal and that his residual issues resolve very soon.  For my part, these burns look worse with each passing hour.  The gastroenterologist (who I like and trust) will look at them tomorrow. 

pializ
Posts: 255
Joined: Nov 2012

I was told at the outset of both short and longterm potential adverse side effects of treatment, & had to sign a form acknowledging acceptance of those risks before they could proceed with treatment. I did consider not being treated, but I have a daughter and husband to consider too. So to not treat was not really an option. I am already improving following cessation of treatment although am aware of the impact it currently has on me being away from home and the comfort of my bidet and toileting facilities. Plus the need to accomodate unpredictable bowel movements. The co codamol along with a low fibre and lactose free diet have helped, but as I don't really need the cocodamol any longer, ir at least a lower dose, I have to find alternative coping strategies. Loperamide seems to be an option and have purchased some in readiness. I sure do suffer if I accidentally take lactose (it's hidden in all sorts). No warning. except severe abdominal cramp and need for urgent visit to bathroom.

I am definitely from out of town. I live in Wales. Our visit to New York was far too brief to enjoy/explore at a leisurely pace. We did the bus loops and then revisited what appealed. Didn't do the Empire State, but enjoyed the View restaurant. I would like to return to walk the Brooklyn Bridge and drink in Central Park. I am not too impressed with shopping so could quite easily give that a miss (except Tiffany's). I enjoyed New York's uniqueness. We have amazing beaches in Wales, and if the weather was equally matched to their beauty, maybe it would lose its appeal due to hoards of holidaymakers. I love it as it is. However, it is easy to forget to appreciate what we have on our doorstep.

I hope you are feeling the benefit of not having to make the daily visit for treatment & that you too start to heal soon.

Best wishes

Liz

eihtak
Posts: 809
Joined: Oct 2011

You sure did make it! It is soooooo tough at times but something just keeps us going. I guess at some point we just don't really have a choice. When faced with sink or swim, we mostly swim!

Recovery is also difficult unfortunately, but at least one doesn't have to keep going back for more full knowing the pain it will cause. Healing will come sooner than you think. I remember by the time I had finished I was in a nursing home ( colostomy issues ), I was hurting so bad in several ways, then it was like one day I woke up, still had burning with urination, but felt amazingly like I was ok. I showered, got dressed, and was smiling all day! Its turning that corner that some have mentioned.

Two years later I am still moving forward. I am different in some ways than I was before, but not different bad, different better! I think recovery at this point for me is still happening, but it has just become my way of life.

Congratulations again on making it through this so very difficult part of this journey. My prayers are with all for continued strength and health.

Marynb
Posts: 1134
Joined: Aug 2012

I just want to reassure you that your burns will heal pretty quickly. Let the air get at it as much as possible and make sure you up your protein intake.

I suspect that most people who come to this site, including myself, come because they are willing to endure medical treatments in order to survive. I suppose there is a subjective continuum as to what constitutes and adequate quality of life when we decide whether to continue treatment or not. For me, having a colostomy would not be so severe an impingement on quality of life that I would prefer death. I am sure my daughter would never want me to check out over such a minor inconvenience.

At any rate, my only purpose for coming to a site like this is to get information and to help as much as possible. I just don't think it would be helpful to any cancer patient undergoing treatment to hear that treatments are so bad, death would be preferable. That's just my take.

LaCh
Posts: 509
Joined: Dec 2012

Thanks for the comments Marynb,

Yes, the problem with allowing air to circulate is that it can't. I've got burns high up in "the crack" and the perineum itself is one mushy, oozing mess, equally inaccessible to the air.  I see the gastroenterologist tomorrow but I suspect that this may be outside her area of expertise. As for the subjective nature of what constitutes quality of life, yes, I agree, it's a subjective thing and what constitutes quality to one, may not constitute quality to another.  If you prefer that I not express my feelings about the realities of treatment or my experience of it and my preference for death over a poor quality of life, I'll certainly respect your wishes and discontinue airing my feelings on the matter.  

Phoebesnow
Posts: 447
Joined: Apr 2011

The truth is out there about pelvic radiation and this particular tx.  Take any symtom u have and put anal cancer next to it and you will find the truth.  My doctor told me it was brutal, painful and that I would not  want to finish.  Healing would take 3 months to one year.  That I would never be the same and that there would be side effects now and down the road.  Recovery 2 years out is not great.  But I would do it again.  I appreciate the good times even more.

 

He never said the tx would be easy, the healing would be quick, and that I would be fine.  I resent these statements when I see them here as it is far from true, as we all know.

 

I think real support would include the truth and how real heros made it thru for whatever reason.  I did it for my husband, he needs me.

Marynb
Posts: 1134
Joined: Aug 2012

I guess we all respond differently. I can honestly say that I did not find treatment "brutal" at all. I found it somewhat painful for about 2 weeks. Also, I healed from that cancer very quickly. Within 2 weeks, my skin was totally healed up and I felt relieved of pain I had felt for years. That is the truth for me and for lots of patients. I guess there is a very broad range and everything is relative. I have been far, far sicker. Sorry if you resent me saying that.

Phoebesnow
Posts: 447
Joined: Apr 2011

I am glad that your tx was somewhat symptom free and relatively easy.  I hope that for everyone.

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sephie
Posts: 514
Joined: Apr 2009

if you do not mind answereing cause i am just curious----where were you treated ... how many radiation txs did you have????///cisplatin or mitomycin???   you did so well ---- i did not do that well but i am alive and doing very well now after 3.5 years...still have isssues and pain but i am used to it.....   sephie

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I had the standard treatment of 30 radiation treatments, and 5FU, and mitomycin. I did surprisingly well, thank God! Especially since I had another cancer which required major surgery 8 weeks later. I don't want to give too much identifying info. I was treated at a terrific hospital! I can email you more specific info if you want it.

I am sure some of it has to do with the skill of the doctors, the equipment, and how each body handles treatment. I am so blessed! I just hope that it worked! Good for you that you remain cancer free after 3 years! That is great! Congratulations!

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i am amazed when i hear how well you did.  i had only 28 radiation imrt txs...everything else was the same as yours...  sooooo glad that you did that well... i was at a great hospital also (MDA)  but just did not do too well and still have issues but like i said ... i have learned to handle them....   thx  again   sephie

Angela_K
Posts: 370
Joined: Jan 2011

Sephie ~ Remember too, that radiation dosages vary as well, which, of course, would have an impact. As would the exact location of the tumor.  There are many seen and unseen factors involved. MDA is the highest ranking cancer treatment facility in the nation - with the best doctors, state of the art facilities and cutting edge science. It goes to show that the effects of treatment is very much an individual "thing" in both how our bodies and our minds handle the physical and mental trauma of it all.  

I don't think I realized how hard it all had actually been until six months to a year out of treatment when my body and head settled out of the 'battle' mode and I truly began to mourn the loss of the 'old' me and accepted the differences and redefined myself. Looking back, I certainly see it as a continuing process long after the last zap of radiation.

I think you and all of us who have had to endure and adapt have an elevated level of empathy for others going through this mess. And that's a beautiful thing.  Many blessings to you, sweet one.

Angela

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I have to echo Angela's comments.  Each of us is an individual and our experiences, while having many commonalities, also have many differences.  I also discourage newbies from comparing their case to anyone else's, as there are so many things that play into each person's outcome.

 

I think I am still, at times, trying to come to grips with what happened to me, now almost 5 years ago.  Some things will be a lifelong struggle--the emotional stuff and occasional physical reminders.  Acceptance is key, but certainly not easy.  Sharing with others, such as those on this board, is helpful beyond words.

LaCh
Posts: 509
Joined: Dec 2012

Hello mp327,

I'm hesitant to ask you this question as it seems rather personal and invasive, so I'll simply ask you with the understanding that if you don''t want to answer, please feel free to say so and I'll understand completely and respect those boundaries. At the moment I'm utterly consumed with pain, internal and external, to the exclusion of everything else.  What are the emotional issues (and the physical) that you speak of that have followed you through the years?  And please, as I said, if this is a  question too personal or too prying, I understand and respect your desire not to answer,

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

No problem in asking this question.  While I consider myself to be a pretty strong person, I have struggled with both emotional and physical issues after treatment.  On the emotional side, it is the fear that I have felt and currently feel (and will probably always feel) that my cancer will someday resurface.  I don't think that's out of the norm for anyone who has been treated for cancer.  Some days are better than others, when I can go for hours without thinking about cancer.  Other days, it seems to dominate most of my day.  That being said, please keep in mind that I am on three different cancer support sites and moderate one of those sites.  So, in trying to support others, I suppose it keeps me from distancing myself further from this disease.  I have vowed to myself to back away from the sites once I hit the 5-year survivor mark, which will be in September, so that I can focus on other things in my life, such as an ailing mother with dementia.  I will not disappear completely, but my presence here and elsewhere will not be as constant.

 

Since anal cancer is a disease with a stigma attached to it, I have also dealt with emotions ranging from guilt to shame to embarrassment.  However, I believe that is in the past and I've been able to focus more on trying to educate others about this disease and be an example of someone who doesn't fit the mold for this disease but got it anyway.  People need to know that no one is exempt from this disease, no matter their lifestyle.  There is still much to be learned about this disease and awareness needs to be targeted. 

 

As for the physical, I have had the usual bouts with fatigue, hip pain and stiffness, and proctitis.  In the beginning, I went into serious panic mode whenever I noticed even the slightest amount of blood with a BM.  Now I know that, although still a little concerning, it seems to come with the territory through which I now navigate.  I really do not have many complaints on the physical side, but as I just posted last week, I was hospitalized for a partial small bowel obstruction, which my doctors feel was probably related to the radiation treatment.  As we have said many times on this board, radiation is the gift that keeps on giving.  I must admit, in the weeks and months right after my treatment ended, I had myself convinced that I would never be able to do the things I did before cancer.  However, as my pic on this site shows, I have proven that to be wrong!  Most people who have never or will never have to have this type of treatment will also never run a marathon.  I consider myself very fortunate to have a mighty bit of determination!

 

I don't know what lies ahead--none of us do.  I just try to take it one day at a time.  On September 9th. of this year, I will be a 5-year survivor.  That will be a monumental day for me, although I don't know, truthfully, how much significance to put on that milestone.  I just know that's the usual benchmark for surviving this and any other cancer.  I hope I've answered your questions.  I'm open for more if you have them.  I hope your recovery is going well. 

LaCh
Posts: 509
Joined: Dec 2012

mp327,

Thanks for your candor and response. While no one knows what lies ahead, not with cancer nor with what's going to happen when you step outside the door each day, it's helpful to know the thoughts and emotions that some people feel, and put a mental check mark near the ones that are shared and omit the ones that aren't.  It simply has to do with preparedness, which of course, is nothing but illusion.  Without going into specifics (I find that my take on things has a tendency to be upsetting to others, at times and I don't want that) I think that I have a better idea of what to expect, at least in broad strokes, since we're all individual and different. I understand your feeling of wanting to separate from these forums after 5 years; I'll probably do the same thing very much before that, not for the same reasons that you have but for others, and then will limit my posts (as I'm trying to do now) to information gathering rather than information or opinion sharing. As for my recovery and how it's going, at the moment it isn't going well and I have an appt in a short while to evaulate the external burns that are melting the flesh of my perineum.  The internal problem is still a mystery and the one thing that will drive me to the edge of despperation with pain that has no words adequate to describe it.  Anyway, thank you for your willingness to share some of the emotions that you feel.  Good luck with your continued healing from the latest experience.

Marynb
Posts: 1134
Joined: Aug 2012

Please don't feel that you have to edit your feelings or posts. I have come to understand that choosing death is a valid response to cancer for some. I just watched the movie, Bucket List. I liked it and related to it very much, as I have an incurable cancer and will at some point, have to decide whether to be part of clinical trials. Today, I think I will just live life and enjoy each day. I had no problems with treatment for anal cancer and endured the pain because I had some certainty that it is curable. For me, the pain was not nearly as bad as childbirth or anything even close! As I said, I was blessed in that regard.

Your feelings are your feelings. The important thing now is that you heal well and quickly. I hope you feel better very soon! Spring is right around the corner.

LaCh
Posts: 509
Joined: Dec 2012

Thank you Marynb, I appreciate your post and feelings.  That said, the exchange of several days ago was something important for me to understand, that things that I say, even things that seem benign to me will have an effect on other people, often unintended, but an effect nevertheless. It's something really valuable for me to know as I move forward.  As it happens, I just had something biopsied from my foot today, something that I noticed round about the 4th week of treatment for the anal tumor, so we'll see what that is.  I think that I'll feel better overall when the external burns heal but the real problem for me is the internal pain which is just excruciating beyond words.  That simply must be resolved because the pain when I "go" is simply unbearable.   Anyway, again, I appreciate your words and feelings.  Be well, heal well.  I, like you, have my sights set on the spring.  I can hardly wait.  With regards....

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