Finished treatment yesterday.

Wisteria83

Hi all.  I've made myself scarce here the past few weeks.  Had a pretty rough time of it.  I got a week long break because of my burns and nausea and doc said it was either that or the hospital.  That break really saved me. I was lucky that it was during the long Easter weekend and it only put me past my original finish date by 3 days.  

So, now I wait and heal.  There are no anwers this early.  I don't know what I should feel like.  I'm glad I'm finished but I still think I should be doing something...wierd just coming to a screeching halt like this.  I'll get a blood test on Monday, but then nothing for another 3 weeks, unless I need another blood test.  

What did you feel like emotionally when treatment was over?  I'm feeling anxious, a little disappointed that I don't have good news to share.  I'm not sure what to say to people when they ask questions.  What about the people who think I'm cancer-free because I finished treatment?  I just don't know what to think.

My husband has been a huge help to me during all this, but even he thinks it's all done and finished business and won't hear anything different from me about it.  Meanwhile, I'm still scared that it still might be there.

 

 

Mollymaude

Wisteria

Congratulations! I was just seeing you on another post and thinking you should be getting done. And yes it is anticlimactic to finish. You kind of expect this big relief but it doesn't really happen. Even when you get the much anticipated DRE after you've healed up and get follow up scan that's clear I still felt like maybe another shoe could drop... My husband was sort of the same way as yours- I think it is so hard on them to think of losing us they can't do it any other way. And as for what to tell people I just told them the truth, done with treatment, still waiting to see if it worked. 

At the stage you are in now I wish someone had told me to take it easy (ok being honest they probably did but I didn't listen). I just felt like "treatment is over I should be getting back to normal". Be patient with yourself, your body and mind have been through A LOT. I still have low energy days I didn't have before the cancer. 

Wisteria83

Mollymaude said:

Wisteria

Congratulations! I was just seeing you on another post and thinking you should be getting done. And yes it is anticlimactic to finish. You kind of expect this big relief but it doesn't really happen. Even when you get the much anticipated DRE after you've healed up and get follow up scan that's clear I still felt like maybe another shoe could drop... My husband was sort of the same way as yours- I think it is so hard on them to think of losing us they can't do it any other way. And as for what to tell people I just told them the truth, done with treatment, still waiting to see if it worked. 

At the stage you are in now I wish someone had told me to take it easy (ok being honest they probably did but I didn't listen). I just felt like "treatment is over I should be getting back to normal". Be patient with yourself, your body and mind have been through A LOT. I still have low energy days I didn't have before the cancer. 

Take it easy

Good morning.

I feel like I don't have much choice but to take it easy.  I still have zero energy, and my husband asked me if I want to go to the beach today with the dogs.  Um...NO Thank you!  I can't be that far away from a toilet yet.  

I'm pretty sure that's what's going on with my husband.  The fear of losing me.  For him, he was driver, cook, shopper, etc. and he's ready to be done with all that, and I don't blame him one bit.  I don't know that I could have done for him all that he's done for me with my pre-existing medical issues, let alone all this cancer treatment.  I'm worried about him too because he really, really went overboard in the care giving department.  I want to be normal again...I want to be better than normal!  

Anticlimactic is the perfect word for this "ending."  Like I've been holding my breath, waiting to let it out, and find myself still holding it.  Doctors and nurses have explained to us that it's still a few weeks yet before we start to feel better.  That last round of Mitomycin has yet to kick in with it's accompanying low blood counts,  and I know from reading posts from others here that they are not necessarily out of the woods yet just because treatment has ended.

I happened to mention to my husband that I never once lost it.  When I got my diagnosis, I was shocked, I think, and I never had a freak out like I maybe should have.  Now, he says it's too late for that.  That time has passed.  Did you ever see that episode of Everybody Love's Raymond, where the wife puts on her recording of the Theme from Ice Castles just so she can have herself a good cry...and Ray didn't understand?  That's kind of what it feels like I need to do, but I feel like if I induldged myself now, that's just what it would be...induldging myself, and maybe it really is too late for that.  I just don't know.

Mollymaude

Never too late

It's never too late for a good cry! One of these days hopefully you can have it. Maybe while your husband has the dogs at the beach! I would go to the bathroom and cry, running the water and sitting in the tub. You are NOT indulging yourself by having feelings. A good cry (or more) helps you move on.

AmyD1310

Wisteria83

Hi there!

I just wanted to let you know that I am in the same place as you, just a tad further ahead. I finished treatment on March 2nd, and have since had a DRE (doc claims he felt nothing there), and a PET/CT that revealed nothing "concerning" to 3 of my doctors. This seems like good news, right? And I'm trying to take it that way, but I feel exactly like you and Mollymaude...should I be doing more? What else can I do to make sure it's gone. I am flabbergasted some days that I am just sitting here waiting to know what's next. I try to take it one day at a time and luckily my job, husband and children keep me busy, but I still have a cry day here or there. It is perfectly ok for you to have one or a couple if you need them! You deserve them after all you've been through! I wish nothing but good results for you from here on out. 

 

-Amy

Salsify

Finishing treatment

Congratulations on finishing treatment. Now you can let go and have that cry that it sounds like you have been putting off for the past several weeks. You need to let that out. And do try to take it easier than absolutely necessary. The treatment is still doing its thing killing cancer cells, as well as a few others, which is why you need to let your body work at healing - but you know that. I think I would be feeling better today (18 months out, my 6 month scans were clear) if I had taken some time or had someone to help. Thank heaven my doctor hospitalizes his patients for the chemo - I cannot imagine caring for myself, let alone working (which would have been expected) with the chemo attached. That said, I was amazed at how much the blisters, peeling, and general rawness of the radiation burns healed in a couple of weeks. Soon I did not even need my "peri-bottle" that I used to squirt water on my crispy lady bits during and after urinating and to squirt mild soapy water, then rinse water, on my behind after those frequent bowel movements before G-E-N-T-L-Y blotting....

I wish you healing and courage and most of all, clean scans when the time comes!

Tushygirl

Congrats on finishing

My last treatment date was April 10.  I was so glad my treatment was done but it also began a new period with new side affects and nothing to do.  During the treatment I had a reason to get out of bed, get dressed and go to war on the cancer via radiation.  Now I stay home with my side effects, trying to do at least one normal thing a day and waiting in limbo until June to see if it works.  Life is on hold until then.

I think the hardest part, besides waiting to see if it worked, is a lost of the old me.  this experience has changed me.  there is lots of good in the new me but I really miss the old sarcastic, impatient me.  

I know what you mean about people think it is all over when it isn't.  I made a good decision in to keep people calling and asking how I am, I started a blog where I was honest about the side effects and how long it takes to heal etc.  It worked out well.  Many commented how they appreciated how open I have been and gave them an sight they seldom experience.  Don't you hate when people ask how you are?  Sometimes I am bratt And tell them ALL about my side effect.  They would usually back away when I started telling them about the need to scream when using the toilet.

Hope you have nothing but clear scans.

mp327

Wisteria

I can so relate to your feelings.  During treatment, I felt like I was going to battle against the disease, but once finished, I sort of felt like a sitting duck, just waiting for it to come back and pounce on me.  I think many of us can relate.  The best advice I can give you is to think positively that the disease has been eradicated and do not let thoughts of "what if" enter your mind.  Stay busy and concentrate on good nutrition and getting your energy back.  We all have played the waiting game and it's not easy, but soon you will get good news!

Wisteria83

AmyD1310 said:

Wisteria83

Hi there!

I just wanted to let you know that I am in the same place as you, just a tad further ahead. I finished treatment on March 2nd, and have since had a DRE (doc claims he felt nothing there), and a PET/CT that revealed nothing "concerning" to 3 of my doctors. This seems like good news, right? And I'm trying to take it that way, but I feel exactly like you and Mollymaude...should I be doing more? What else can I do to make sure it's gone. I am flabbergasted some days that I am just sitting here waiting to know what's next. I try to take it one day at a time and luckily my job, husband and children keep me busy, but I still have a cry day here or there. It is perfectly ok for you to have one or a couple if you need them! You deserve them after all you've been through! I wish nothing but good results for you from here on out. 

 

-Amy

Keeping busy

Hi Amy, I think I recall you wrote something about not being sure if you could have your "Happy Dance." a while back?  I'll need to go back and reread posts.

I'm trying still to balance constipation and diarrhea, nausea is not such a huge issue as it was, but I still have no appetite.  I lost the weight I had gained and pretty much lived on Boost Plus for the last two weeks.  Fatigue is constant, so even though I'm bored, I'm not motivated to do anything.  Now my latest side effect is bladder urgency and incontinence.  

I'm so glad for you that your follow up tests have been good.  It has to be somewhat of a relief to have even that little bit of positive outcome, right?  I can almost picture you drumming your fingers and wondering..."next??"

Working and raising your family must be exhausting.  I've been disabled since 2006, so I don't have a job, my kids are all grown and living their lives with their families, only one lives in the same state that I do, so I don't have those responsibilities to get back to.  I have nothing to keep me from getting all the rest I need to heal.  The only regret I have at this moment is that we just got two puppies a month before this all started, and I don't have the physical strength and endurance that's needed to train them.  We managed to get them house trained within just a few weeks, and I have all this free time but no way to actually put it to use yet.  I suppose that each day that passes will see me stronger and closer to healed so that I can devote myself to training them and at least making sure that they have manners.  One more thing to cry about maybe?  lol.  

Wisteria83

Salsify said:

Finishing treatment

Congratulations on finishing treatment. Now you can let go and have that cry that it sounds like you have been putting off for the past several weeks. You need to let that out. And do try to take it easier than absolutely necessary. The treatment is still doing its thing killing cancer cells, as well as a few others, which is why you need to let your body work at healing - but you know that. I think I would be feeling better today (18 months out, my 6 month scans were clear) if I had taken some time or had someone to help. Thank heaven my doctor hospitalizes his patients for the chemo - I cannot imagine caring for myself, let alone working (which would have been expected) with the chemo attached. That said, I was amazed at how much the blisters, peeling, and general rawness of the radiation burns healed in a couple of weeks. Soon I did not even need my "peri-bottle" that I used to squirt water on my crispy lady bits during and after urinating and to squirt mild soapy water, then rinse water, on my behind after those frequent bowel movements before G-E-N-T-L-Y blotting....

I wish you healing and courage and most of all, clean scans when the time comes!

Thank you

I had Xeloda pills so I didn't have to be attached to a pump.  I think your doctor hospitalizing you during your chemo was a great idea...after reading some posts on here from folks who hadn't been.  I'm glad I was able to stay home for the duration, but I have to wonder if the nausea would have been less if I wasn't getting chemo every day.  When I had the break from it, my husband said he definitely noticed a difference in how I was dealing with everything.  Although I only felt that I started getting relief from the burns during the last two days of my break, my doc said it saved me from hospitalization, which was where I was headed next.  

I'm still treating myself gently.  I'm fortunate that I'm in a position that I can.  It's impossible to completely separate the emotional from the physical since they are so closely intertwined, but I have been able to deal with the physical aspects of treatment while kind of boxing up the emotional and maybe that's the way I needed to do it in order to get through it.  Now, I would appreciate a let up on the physical pain and fatigue in order to let these pent up emotions out.  I never realized that I was such a control freak before!

 

 

ginatom

I remember this phase so

I remember this phase so clearly from 2011 when I had radiation for breast cancer.  First of all I had a big snafu toward the end.  My rad onc told me on Monday of my final week (week five) that I was going to need an extra week (week six).  Then I came in on Wednesday of week five and they released me!  And she was on vacation and unreachable.  So I was done, not feeling done, but wishing I was done long ago - it was VERY confusing!  But truly it's just time that gets you through this.  I did help me in one way because it made me really angry - an emotion I could really feel!

Two things did help (in addition to all the pain relief things that you are already doing).  One was to take walks.  I know . . . you have to start really slow and build up.  Go out one block and back.  Then go AROUND a block and gradually repeating that block when you can, so you are never more than two blocks from home (or the car).  The exercise really helps everything WHEN you can do it.  I'm not saying do it before you CAN do it.  Lube up first for the chafing.

The other thing was journaling.  I have this technique where I interview myself.  I write down: so how are you feeling?  Or I write: what do you feel you have lost?  Anything to tap the flow of thoughts and feelings.  And then answer.  When one runs dry, ask another question.  Go up and down the page as you think of more things.  There is nothing wrong with feelings - it's really important to experience them fully, even wallow a little bit, then get up and go for that walk or do whatever needs to be done.  Many studies have found that "identifying" feelings really helps us cope with them.  They often feel like such a jumble.  Breaking them out and examining each one really helps.

Thank you so much for posting this as it helps us all.  I haven't begun treatment for the anal cancer yet - still gathering info.  But I am already grateful for every sharing.  Best of luck to you, and I too am with you.  It seems to me you are exactly where most of us have been at the end of treatment.  Gradually you will start to recognize yourself again and know how to put it all into a constantly changing perspective.

Tabbysmom12

Wow this thread really helps as I am feeling so "lost" since finishing treatment YESTERDAY!  One day and I don't know what to do with myself. Of course I am so happy to be done treatment and all the self care is sort of like a job but I do feel like I should be doing more. It will be an effort to get moving each day with no where to go. Waiting will not be fun but trying to keep in in the back of my mind and stay positive. I also am telling everyone we will know in June how successful it was. Congratulations everyone who got finished treatment and positive energy for those just starting.

Very glad to have joined this group thankful for you all!

Mollymaude

Tabbysmom

Congratulations on finishing treatment! And I'm glad the posts have helped. One of the things that has occurred to me is that I think I was expecting to feel "cured" and feel invincible to cancer again (naive to think that I know now). My family did not have cancer. I had two relatives that got cancer after they were in their 70's and that's it. Now strokes and dementia, those I worried about since that's what my family tends to get. It literally never occurred to me that I would get cancer, and I now know I will never feel "invincible" again. I wouldn't say I'm worried the cancer will come back, but I'm definately aware it can. And I'm aware of this everyday. And if I should forget I have plenty of reminders in the form of radiation damage (proctitis, bleeding, lactose intolerance, low energy days, vaginal stenosis, etc, etc) to remind me. So for better or worse you never return to the precancer you.

On the plus side life is sweeter and I think I'm much more grateful for living, my family and friends, and just everyday things. I enjoy being able to be able bodied again and do laundry (!!!). My gardening and flowers and flea markets and even my job are enjoyable in a way they weren't before. 

Wisteria83

Tabbysmom12 said:

Wow this thread really helps as I am feeling so "lost" since finishing treatment YESTERDAY!  One day and I don't know what to do with myself. Of course I am so happy to be done treatment and all the self care is sort of like a job but I do feel like I should be doing more. It will be an effort to get moving each day with no where to go. Waiting will not be fun but trying to keep in in the back of my mind and stay positive. I also am telling everyone we will know in June how successful it was. Congratulations everyone who got finished treatment and positive energy for those just starting.

Very glad to have joined this group thankful for you all!

Congrats!

Great job finishing treatment!  You made it to the other side!  Now welcome to limbo land.  It's such a strange feeling to not have anywhere to go each day, but at the same time it's a tremendous relief.  The job now is to heal and hope that the side effects hurry up and go away.  How is it that you will find out in June how successful treatment was?  I was told my first anoscope won't be until July, and that it could still be months before we know definitively.

Tabbysmom12

Wisteria83

I am scheduled for MRI and CT scans June 12. My radonc said we will be able to tell if it "didn't "work. Whatever that means.Not sure what other tests they will do, but I know I will be seeing medical oncologist, radon and surgeon at some point with several check ups every few months. 

Tabbysmom12

Mollymaude

Thank you! I already feel different and more aware of how many wonderful people I am blessed with in my life. I think I am definitely looking at life differently already. I know i am more emotional and trying to not take anything for granted....For better or worse,  LOL.

ginatom

Mollymaude said:

Tabbysmom

Congratulations on finishing treatment! And I'm glad the posts have helped. One of the things that has occurred to me is that I think I was expecting to feel "cured" and feel invincible to cancer again (naive to think that I know now). My family did not have cancer. I had two relatives that got cancer after they were in their 70's and that's it. Now strokes and dementia, those I worried about since that's what my family tends to get. It literally never occurred to me that I would get cancer, and I now know I will never feel "invincible" again. I wouldn't say I'm worried the cancer will come back, but I'm definately aware it can. And I'm aware of this everyday. And if I should forget I have plenty of reminders in the form of radiation damage (proctitis, bleeding, lactose intolerance, low energy days, vaginal stenosis, etc, etc) to remind me. So for better or worse you never return to the precancer you.

On the plus side life is sweeter and I think I'm much more grateful for living, my family and friends, and just everyday things. I enjoy being able to be able bodied again and do laundry (!!!). My gardening and flowers and flea markets and even my job are enjoyable in a way they weren't before. 

Good advice and insights

Good advice and insights Mollymaude.  Thanks.

Wisteria83

Tabbysmom12 said:

Wisteria83

I am scheduled for MRI and CT scans June 12. My radonc said we will be able to tell if it "didn't "work. Whatever that means.Not sure what other tests they will do, but I know I will be seeing medical oncologist, radon and surgeon at some point with several check ups every few months. 

Being able to tell if it didn't work

It sounds like if they still see the tumor they will assume that it didn't work.  But...if they don't see it that means that it did.  What if they see it and it's smaller?  That I guess would mean that it worked some, but not completely. but it's my understanding that the radiation keeps working after treatment ends and it can take months to know for sure.  I wish there was an easier way to know for sure.

mp327

Wisteria83 said:

Being able to tell if it didn't work

It sounds like if they still see the tumor they will assume that it didn't work.  But...if they don't see it that means that it did.  What if they see it and it's smaller?  That I guess would mean that it worked some, but not completely. but it's my understanding that the radiation keeps working after treatment ends and it can take months to know for sure.  I wish there was an easier way to know for sure.

Wisteria83

My radiation oncologist told me that radiation continues to work for about 6 months after treatment ends.

Tushygirl

mp327 said:

Wisteria83

My radiation oncologist told me that radiation continues to work for about 6 months after treatment ends.

That is what mine told me too

That is what mine told me too