Very glad you are feeling better.
Great to hear!
great!!!!!! hug your dog.... sephie
It happens to the best of us!
Yes!!! Really happy for you. Me too, although it has been a bit tricky since treatment ended to get used to managing radiation enteritis. I was lucky to not have suffered too much during treatment, which I think was due to all the advanced help and advice from this site and Macmillan.
Don't forget though, you/we are still recovering and need to take it easy.
A genuine and sincere thank you.... and to pializ, yeah, there's no doubt, I'm not "there" yet, just on my way. Still have pain (but less) still have urgency issues (but somewhat more predictiable) still on a peculiar and restricted diet (with focus on what feels the least painful coming out) and the fatigue isn't all gone but better than it was. All in all, when I look back to a week ago, I see improvement. I try to keep to a schedule with the oxycodone and if I forget, the pain returns to remind me. Reading this post, it doesn't sound all that good, but I do, in fact, feel better. I thank all for their past and continued support. It's very, very gratifying. (Also... what's Macmillan?)
I am so glad that you could post a "with-it" happy face! I remember when I got to that place where I still felt lousy and yet the better felt so good.. Smiles!
Yay! and Yay!
So glad to hear that you are on the mend. It surely takes time, yet my husband and I were very surprised at how quick the external healing took place. It will take you some time to heal inside. He still has issues but at least all the pain is gone. Hope you are staying warm in snowy New York, snuggle your fur baby.
Now that is great news. Hoping that each week gets a little bit better than the last! Stay warm and rested! It is so good to be done, isn't it!
Macmillan. Org.uk Cancer support. I live in Wales. Another Anal cancer group.
A heartfelt "thank you!" for everyone. Yes, it's good to be done and able to focus on the road ahead rather than being utterly consumed by pain. I know that it's not nearly "over" but I'm feeling more human and that's a real mental boost. I still have pain but feel better able to deal with it (and not like it's "dealing" with me). I think that with time will come a better sense of objectivity in which I'll be better able to reflect on the treatment experience. It already has a cloud of unreality attached to it, I suppose because of a mental retreat from what was happening and in large part because of the level of pain that I had. The last week and a half during which I could no longer walk to treatments and had to talke cabs already has a dreamlike quality to it. I think that there will be positive things to be gleaned from the experience that will come with time, reflection and introspection. Maybe that's the next phase, who knows. Right now I just need to keep doing what I'm doing and if that means taking the easy way out (like it did the other day when I sent out my laundry rather than doing it myself) then that's what I'll do. I hope that with time I'll be pain free and able to untether myself from the bathroom. I hope that I'll soon be able to start some gentle walking on a treadmill when I'm able to walk pain-free (when the external burns are completely healed). In any case... I'm feeling better and expect to feel better still with the passage of time and send out a very heartfelt "thank you" to everyone.
It makes me feel very good to wake up on a Sunday morning and read your post. You are just going to get better and better as each day comes!
You're so kind.... I've received support from people I didn't expect to and not received support from those who I thought would give it, but I never expected such support from strangers who simply shared the same experience as mine. It's made a huge difference in the process and brings into sharp focus the fact that sometimes, the difference between "making it" and not making it can be as thin as the thread of having or not having support. Thank you for such kind thoughts for someone you don't know and probably never will. It's a testament to the humanity in all of us, that doesn't always come to the fore, but has for me, here. Thanks. (PS I made a second version of MP327 Soup, this time without the chicken stock, every vegetable I could throw in and potatoes. It's a great, tasty, healthful way to eat right now, delicious going in and very tolerably painful coming out. I thought of you when I was making it.)
Your words are very thoughtful and kind--thank you! I have believed from the beginning of this cancer journey that paying it forward allows me to somewhat, but not fully, understand why I got this crappy disease. I will never understand it completely, but have accepted it as just another part of my life. As you know, we are a small group. Put all the people in this world under a microscope and our little group would probably not even be seen. That's how small we are to the rest of the world. But inside of this space, we are huge!
I'm glad you are become a "souper" soup maker! Enjoy!
My take is a little different. My take is that things happen and I don't look for any deeper meaning in terms of why they happen (and so for me, there's nothing to understand). That said, I believe that the things that happen can be utilized as catalysts for positive personal change (that was my primary goal, and I'd even say equal to eradicating the tumor). I think that what comes your way is of less importance than how you respond to those things. Do you crumble before them or do you rise to the occasion, do you become more patient or more crabby, more selfish or more giving, more open or more closed, and so on and so forth. In terms of giving to others what has been given to me, yes, I feel that desire as well, but I'm also a believer in not adding to the pot unless I have something original to offer, and I feel that whatever I say or can say has already been said and offered by others. To pay it forward would just mean repeating what's already been said and that might make me feel better or like I've contributed in some way but it won't really have given anything to another... But do I have the desire to help others? Yes. I think that most people do. As for the souper in me...who knew. I've been a closet soup maker all these years and never knew! But in recognition to the one who brought it out in me, I've named the soup in all its permutations, "mp327 soup."
Still love reading your posts, and this is especially good! I too felt blessed by the help and support from total strangers and maybe thats what drives us to continue paying it forward. Have a good restful day and continued healing!
Thanks for your kind words. It's more gratifying to help another than it is to be helped, something that I'm betting most people feel. I'd like to stay somewhat current on this forum on a limited basis, for others who come after, but I feel that I have nothing really new to offer that hasn't already been offered. This is an information-based, information-heavy site, which is why it's been so useful to me, or one of the reasons. I'm not sure if one more person adding to the mix would be all that useful. But we'll see. I was kind of thinking of maybe trying to do some volunteer work when I'm able. When you've earned some "street cred," it can sometimes be put to good use, and curiously, when you say, "hey, I've been there," it can be helpful, sometimes even more helpful that a truly empathetic, warm, giving person saying, "I have no idea what you're going through." That said, I think that they both have value in different ways and when people said to me, "I can't even imagine what you're going through," (my radiation tech, for example) the compassion in her voice didn't carry less weight because she didn't know. But that having gone through something like this can sometimes have meaning for someone else going through something similar. Maybe there's a way to parlay that into something useful. We'll see. Although I'm feeling a lot better, I'm not ready yet for something like that. It's just a thought percolating in the back of my mind.
For a couple of years after treatment I posted quite frequently. It was very therapeutic. It felt really good to be able to help other folks going through something I had already been through. I've dropped off quite a bit lately but still lurk every day and keep track of what's going on. There can be a lot of psychological and emotional feelings that come up after treatment. I'm not one to join an in-person group (besides there aren't any for anal cancer in my area that I know of) so posting was a great way to work through things that I didn't even know were issues. Hope you remain but you do what's best for you - and hope you continue to feel better.
Well, I never say never, and won't start now, but I don't anticipate any psychological or emotional issues about the experience (outside of lingering ire at my doctors). Maybe it's to do with the (seemingly peculiar) lens through which I see things, but this, to me, was just a problem like any other, with higher stakes, to be sure, but something that I had to address, and I did. I don't read anything into it, see no hidden or deeper meaning (as I posted earlier to mp327) but feel that the experience is whatever I decide it is, whatever I choose it to be. I'm trying to make it a catalyst towards a better me. That was my goal at the outset and remains so. In terms of death and the precipice that we've all looked down into, I'm not eager for death, don't want to go there just yet but don't dread either, I suppose because of my belief in the cycle of reincarnation. But I also understand that I have a lot less to leave behind than many people who post here; no spouse, no kids, no grandkids, and that makes things quite different for me. What's more, the one to whom I feel closest has already died, so of course, that colors my responses as well. In any case, as I said, I don't anticipate any lingering psychological issues but know enough, at least, to know that I don't know everything and never say never. Thanks for your thoughts. I'll certainly keep them in mind.
I think the natural order of things so to speak is to drift away in time. We who both seek and give information now, will unfortunately be replaced until there is no more cancer to seek information about.
I know though, that at times in my life, the slightest comment said just at the right time in the right way has made all the difference. You never know the effect your words may have on another person. This journey has connected us to people we otherwise would never had known, and for me it is a connection that is deeply valued. I hope to keep that going for some time, but again, time will tell.
I too have those percolating thoughts....I think thats what drove me to go back to school. I am finishing my degree in Human Services, so although I don't plan on a career at this point, who knows where that may lead me. We have already graduated from that all too famous "School of Hard Knocks", so when we tell someone we understand....we understand.
I do hope you stay around here long enough for me to finish my written comm. class, I may need some creative ideas!
Continued health and healing!
(eeks on me now...this is in response to LaCh's earlier post also!!)
I think that drifting away with time (at least for me) will be a healthy thing. There are many ways in which we're identified in life, and in which we self-identify, but I don't want either to be that I had cancer. It doesn't comment on the kind of person that I am, it doesn't comment on my good qualities or my bad, my acts of kindness or my (regretable) acts of cruelty. It's just something that happened in my life, and if anything about it defines me, I hope that it'll be how I responded to it. To me, the drifting away is not only a natural progression but a healthy one. As for the school of hard knocks... everyone, without exception, who lives long enough, will experience challenges, losses, painful and difficult things... having cancer is but one of many ways in which people are challenged. We all have "something" and many people have many "somethings," but no one has a corner on hard knocks.
Going back to school... I envy you that. I'd love to return to school, also not for professional reasons but simply because I loved college and wasn't able to finish. There are a million things that I'd love to study, (I'm not more intelligent than average but I have a very high curiosity quotient) but unfortunately, it's financially out of reach. But yes, I understand how a thing like cancer or any weighty experience for that matter, can have a far-reaching effect on paths chosen afterwards.
Your comments about sticking around for creative ideas--that's kind of funny. I can't imagine what creative ideas you might find in my ramblings, but I suppose just like "one man's trash is another man's treasure," one person's ramblings can seed another person's creative juices.
Finally, the comment that resonated most deeply for me. Yes, I've seen how a simple word or a gesture, a glance or a smile can have the most profound effect, seemingly far out of proportion to what was done or said. The good and the bad. This is something that I've thought about more than once during my life. I still remember how deeply I was touched by people who had not the slightest idea of what they had done, nor that I would remember those things 40 or 50 years after the fact, and wish that I could reach back in time and say, "Thank you." You just never know... the burden of responsibility if one thinks overlong about it is daunting because just as a word that to you means nothing can have a long lasting positive effect, a careless word that to you also means nothing can have a devasting one. If you think about it too much, you become afraid to leave the house or open your mouth.
So happy for you. That means I can't be too far behind you. I was doing better, but yesterday was awful. I got thru the day okay, but was in tears in the afternoon. I think part of it is just frustration. I want away from this painful toilet :(.
I had days like that too--one bad one, for no reason, cropping up after a string of good ones. I told myself that it was just my body's way of keeping me in check and not getting too ahead of myself. Those days will happen less often as you go along.
I've come to realize that while the problems are more or less the same (with some differences, because we're all individiuals) the responses seem all over the map; some have a lot of pain, some have none, some have mouth sores, some have none, some have urgency problems, some have none...that's what I mean. I do hope that you have more good days as you move forward and fewer bad ones. In the back of my mind is also the knowledge that this isn't necessarily a linear thing, but a "few steps ahead, few steps back" sort of thing, but try not to borrow problems in advance of having them. I've also had bathroom visits that are more painful than others, the difference now being that the parameters are more narrow; they're painful to quite painful now but not outside those parameters and no longer the screaming-into-the-towel experiences that I had 10 times a day for almost four weeks. I'm not good at platitudes (as I mentioned in an earlier post). All I can say is that I wish you well and better than well. The body wants to heal itself and will always try. Some seem better at it than others, but they all seem to want to move in that direction. Try not to despair; it's trying. It may just need time to get its act together. As for the question of frustration, that's a real problem and if someone has an easy answer, I'd love to hear it. Although I was never unable to deal with the physical issues, even the most challenging and painful, my sources of frustration were always related to my doctors, and as good as I was about dealing with the actual illness, I was that bad at dealing with the frustration that I felt with my doctors. I handled the physical; my frustration with the doctors utterly undid me. What works for one doesn't necessarily work for another. Find your best solution; venting/not venting/ talking to someone,/talking to yourself, thinking about it, thinking about everything but the frustration. Whatever brings you the most solace. But if you're close in time to me, we're both just out of treatment. It's tempting to think, "what's taking so long?" but in reality, the wounds are still very, very fresh.
Reading on the posts on this thread have me both smiling and crying. Thank you all for sharing, for taking care of each other here.Three and ½ months after treatment. I am comfortably sitting on my couch, having retired my waffle cushion, appreciating something this simple and remembering when I would just cry with pain and frustration that I couldn't sit, something we all do for hours every day. Still dreading the trips to the bathroom but even that's gotten better since I became more mindful about eating a low-fiber diet which goes completely against the way I used to eat. Once I get through the first few hours of the day, I know I can confidently leave the house and I am hoping in time that I will lose that fear (or at least be able to manage it) of being too far away from a bathroom. For those of you with less healing time than I have please believe it really does get better. And it is so good for me to hear from those who are ahead of me especially those who are years ahead. Thank you all.
I'm so happy you are much improved since finishing treatment. I'm glad that you are taking time to appreciate those little things that all of us used to take for granted. The lingering bathroom issues will continue to get better and soon you will be leaving the house without those types of things being so heavy on your mind. I thank you for giving encouragement to those who are just out of treatment--things really do get better!
Hi - I wasn't really talking about life and death type things, because I never really felt like I was going to die or anything. Not sure exactly how to explain it - would probably need a psychiatrist to figure it out. It's just that later on, about I guess a year out of treatment, I still had unresolved feelings about the cancer and subsequent issues I had with the treatment. Just kinda sneaked up on me. The forum was a safe place to go to either talk about things or help other folks out.
(eeks, this belongs under LaCh's post from 5:00pm - sorry, put it in the wrong place and don't know how to move it)
No worries, I found it. Well, I'll just wait and see. There's no doubt that for any lingering feelings related to the disease or the treatment, the place to come for a sounding board would be here, and explore it with others who've experienced the situation as well. As for issues with the treatment... I went into the experience with a low, very low opinion of western medicine and western doctors and nothing that happened before, during or after has changed that. Reinforced my feelings, yes, but changed them, no. I'm not good at airing intimate feelings in a public forum but I suppose that if I felt the need and had no other outlet, or felt that no other outlet could give me the perspective that I needed, I would. Like I said, I try to never say never. For sure I can't say that I'll never feel a particular way simply because I don't feel it today. If I need it, I know that it's here.
In a way I need this site more now BECAUSE of subsequent issues. When I read where Martha, Sandy, you, Sundance from the colo/rectal board andeveryone else have been through similar trying things I take a deepbreath and say, "and this too shall pass". Sometimes inthe literal sense! Hugs
I so agree with everything you said!
before, during and now that I have completed TX.
I really LOVE the search box---used that a lot the past few months, that is why i thank you ALL for taking the time to post how you feel and what you are going through, what works and what doesnt--THIS information is invaluable coming from people that have been in the same place you are!
and I am so happy for you LaCh that you are feeling better--I didn not post a lot during my TX but you were just 2 weeks behind me (sorry for that) and your posts helped me a lot
Really! Well, thank you for telling me that. I can't even imagine what I could have said that anyone found helpful (I remember several semi-rants though, and especially during the midway point of my treatments) but I thank you sincerely for saying so. It's enormously gratifying to know that something I said helped somebody else. BTW, I've used the search box too and I agree, it's a great tool.
if there is such a thing LOL. like I was not alone. since diagnosis it has been a few mind blowing months to say the least.
One day I was skipping along
and the next day a bridge fell on me
Thank YOU for posting your thoughts and feelings
I loved your short but sweet summation of your journey!!! It's so true..... Glad you made it through that bridge falling on you!!!!
Well, I'm very glad that I was able to do that, inadvertant though it was. I guess it falls under the heading of saying or doing something that has a positive effect on another person, but for which you're completely unaware. It's what I was talking about earlier. Curiously, I never felt like a bridge fell on me or like anything awful had happened, and in truth, the entire thing is receeding in memory with a dreamlike quality. I feel like I've woken up and that it never really happened (except , still, when I go to the bathroom). The mind is a funny thing. Or maybe it's just mine that is. Anyway, I'm sincerely glad that I was able to help.
That's kinda like child birth ... Long term memory of it would assure that our population did not get out of control! LOL! So glad you're better!
Well, I'll have to take your word on that.... then again, if forgetting the pain of childbirth leads to multiple child households, I hope that a fuzzy memory of what transpired over the last 2 months doesn't lead me to repeat it, or to a willingness, should the need arise. Once was quite enough; I remember it well enough to know that. Anyway. still imporving, yes, thanks, not necessarily in a linear fashion but more of a zig-zag; had a doozie of a bathroom experience this morning but if I "pull the camera back" and look at the bigger picture rather than the smaller, "improving" absolutey describes things.
you are an excellent writer---excellent in the way you express yourself.... your posts are extremely valuable .... i am 3.5 years post tx and still read every post to learn even now how to handle the pain, bleeding, urgency, issues that i have..... do i dwell too much on my disease??? perhaps but i am reminded daily... i have improved and am sooooo grateful for how far i have come..... my poiint is that you should be a writer.... i do not know what your occupation is but you could branch out with this ability you have to express yourself....... sooooo glad that you are feeling better and better......as we all do, I UNDERSTAND........sephie
wow. Well, I'm deeply flattered that you should say so. Am I a writer? Well, I write. I write all the time. I have since I was a kid. I need to eat, drink, sleep, and write. It's something that I do because I need to. I write for pleasure, and because it gives me something. I write because it's like my own, personal virtual reality. It's an addiction. A drug. A necessity. I've never published and never had the slightest desire to publish. Writing, for me, is a personal, private, deliciously solitary endeavor, something by me and for me... However.... I've recently and reluctantly decided to publish a book that I wrote. My joy was in the writing. My misery is in the publishing but I feel like it's something that I have to do in order to move on. I don't know what I think about things "meant to be" or destiny or a script that one writes to oneself before birth but whatever the truth to those things, I feel like publishing this book is something that I need to do. I'm rushing headlong toward something that I want to run from but I feel like--well, when people say "I have things yet to do," when they speak of not being ready to die...the implication is that those are things that they either want to do or feel that they should do, for reasons of personal growth, of personal challenge, of completion, of a variety of reasons. I feel like this is one of those things. So although my heart isn't in it--it's very much against it--as soon as I'm able to sit, I'll have to start the editing process and get the thing done. Publishing this book will be more emotionally challenging, more traumatic, more sad and painful and difficult than the cancer diagnosis and treatments thatI just endured. But... in light of how deeply I love to write and how important it is for my equlibrium and mental health, and despite the fact that I write for only one person--myself-- I thank you from the heart for saying such a thing. It's a deeply, deeply gratifying thing. Really.
What I learned from having cancer (twice) is that we are all connected somehow. I had been thoroughly independent and seldom asked for help before cancer. As a single mother, I prided myself on my ability to do it all on my own. I was a proud woman. When I got cancer, I had to reach out and so many responded to help me. We are all part of the same body. We need each other. I have been overwhelmed by the level of human kindness shown to me. This site has been valuable in the post treatment period. The issues we experience are common to many of us and it has helped me very much. Also, because this is such a rare cancer, there are not many places to go for information and support. It helps me to be able to convey the limited information that I have. Encouraging patients to seek the most competent medical care they can get to is important to me, because I was misdiagnosed for so long. All medical facilities and doctors are not equal and it is important to know how to evaluate hospitals and doctors. If I can prevent one malpractice, I will be happy. I have seen too many disasters.
Yes, I'm like that too; I don't ask for help and don't easily accept it when it's offered. I'm a very solitary person by nature and tend to prefer my own company. I'm independent and love my independence, I'm autonomous and love my autonomy. Case in point: the only thing that gave me relief (and continues to be the only real thing that can) are the massages from the therapist that works with cancer patients at Sloan Kettering. People said to me during the weeks of treatment, "I wish I could be there with you," to which my response invariably was, "There's absolutely nothing you could do for me if you were here." Well, a cousin of mine said that she wanted to send me money. I said, "Thank you, but no." So she sent it anyway. Another cousin (her sister) said, "I'd like to send you some money," to which I said, "Thank you, but no." So she sent it anyway. Then friends that I have, a married couple said, "We'd like to send you some money," to which I said..well, you can guess what I said, but they sent it anyway too. So although there was nothing anybody could do for me if they had come here to be with me, friends and relatives found the only concrete way that they could help and they did. Because of their generosity (the money was substantial) and deep desire to help me, I've been able to have a massage once a week and although my pain is under much better control now, there's only one time during the week when I can actually say, "I feel good," and that's during the massage. I've been humbled by the kindness shown to me by aquaintances, by friends, by relatives and by strangers on this site. I've been deeply grateful for the empathy and caring shown to me by the radiation oncologist, the radiation nurse and the medical nurse who administered the chemo, all of whom went far beyond what they had to. If I take nothing more from the last several weeks, I'll take the humanity in people, the innate kindness and generosity. I'll take away the impression it's left upon me and try to honor it by giving it to others. So... independence aside, I've received things beyond measure and yet have remained myself. I'm still unsure how to translate a desire to help others into a way to do it, but I trust that the way will come to me in its own time.
Yes, cancer changes us in so many ways. I am in the process of a career change. I want to find a way to use my knowledge and skills to help in some way.
You describe your need to write, the same way that my daughter does. I hope you finish that book! Something tells me that you will!
My hope is that the cancer experience will be the catalyst that I need to facilitate the personal changes that I want for myself. As for the book... it's already finished. I just have to edit it for grammar, spelling and punctuation. Writing is my salvation, my solace and my sustenance. It's like a drug; if I don't write for a period of time, I start to have withdrawal and end up writing in my head. I'm sure your daughter understands. But publishing has nothing at all to do with any of it and to get it ready for publication is just a daunting, onerous, unpleasant task that I have to complete and the thing that makes it so hard is that altough I've decided to do it, my heart is definitely not in it. What I really want is to jealously guard it and keep it for myself, but I've decided to do something else. So... we'll see. But the book is finished except for the editing which no one in their right mind would even attempt to do for their own work but which I'll have to do because I can't afford to have someone else do it for me. I'm thinking that it'll be done towards the end of the year. As for using the experience to help others, yes, I've thought the same thing, not as a career but maybe in the capacity of volunteer. So was the cancer a bad experience? I can't see anything bad in it whatsoever. To the contrary, it was and is a very positive one, or, that is, the effect that it's had upon me, the things that it's given to me and shown to me, are. If your daughter loves to write as you say that she does, it's a wonderful "crutch," a beautiful addiction, the perfect escape. May it continue to give her what she needs.