question about internal pain

LaCh said:

mp327 Thanks!

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.

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

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

pializ said:

LaCh

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

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 said:

eihtak

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.

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 said:

pializ

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.

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 said:

pializ

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.

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

LaCh said:

marynb

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.  

Your feelings and the reality of treatment are important, so please don't stop posting. I value your alternative take on things...... as I said before, they closely reflect mine  and it is reassuring to have your perspective on treatment, symptoms etc. You are not being cruel, hurtful, or disrespectful by expressing your opinion. We all have them. Where we differ is that whilst quality versus quantity is an issue for me, I have to consider other people i.e. my daughter & husband who mean so very much to me. Initially, I was told I had rectal cancer, for which the treatmentwas a colostomy and chemotherapy. A colostomy was well within my perspective of being doable, and if that is needed later on, well so be it. Our circumstances are different! Our perspectives, whilst similar, are also different. Each and everyone of us who have been diagnosed with anal cancer have different circumstances and perspectives. It goes with being human & long may it continue. I have made notes (brief....very brief) on what has helped my journey through treatment & will put it into some sort of document/post. I always think good has to come out of bad so if I can help someone else, that's OK.