Last day!! Now what?

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MMDowns
MMDowns Member Posts: 318

Friends, 

This is a HUGE day for us.  My husband's last day of rads is today!  At 4 p.m. he will officially be done with the 7 weeks of intense treatment.  And I have no idea what to feel.  Of course, I feel relief and joy.  But... now what?  He begins to heal and hopefully he can taste food soon... I know this sounds weird but I am almost afraid to move forward.  The dr's office and cancer clinic have become like a second home to us; a home that makes me feel safe when he is there.  It's almost like our house is an unknown.  There are no dr's there and no nurses to call.  We have been waiting for this day for 7 weeks.  Praying for the end and now it is here.  I am excited.  I am.  But, I am scared.  I think the reality of this cancer always being a part of our lives has truly hit me.  There is nothing left to do but pray and work to get back to our lives.  We made it. He made it.  He is a cancer survivor. I get my husband back.  We did it.  Wow...  :)

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    ringing the bell

    MMD,

    Pick up your diploma, give your mask to the homeless and print this chapter as done!

    It is true; many of us feel a true kindness toward our rad and chemo oncologists and their support team.  I still like to see my rad onc very much.

    Forget the old normal and embrace your new normal.  My new normal loves cookie dough ice cream.

    Best of luck,

    Matt

  • swopoe
    swopoe Member Posts: 492
    edited April 2017 #3
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    You made it! We felt the same

    You made it! We felt the same way, but even more so after the first NED. The ENT told us to just live. That was great advice.  Enjoy being together and then going to sleep together at night. Cherish your moments. You are both survivors! So proud of and happy for you both!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    Yours is a very common

    Yours is a very common reaction, and your questions and concerns are healthy and normal.  You are also very lucky - you have found csn.cancer.org and the people who will answer your questions are amoung the most experienced in the world.  I did not find this site until 4 treatments from the end, but it has been a go-to every day since then.

    I suspect you will find your oncols will not be as attentive now.  That is as it should be, they have others in greater need, but it can be a little unsettling.  Know that while treatment is pushed, hard, and the schedule all consuming, recovery is SLOW.  Some gains come quickly, especially some of the most important ones, others take far longer.  I expected to be 'normal' within two months.  Today, at four months I am gratefully healthy, feel fantastic at times, but know that some of my side-effects will take a year or more to resolve.  I also know I am luckier than some because I have realistic prospects that my side-effects WILL eventually resolve, and the average day is good enough.

    Congrats, now start the count-down to NED.

  • Chicklette
    Chicklette Member Posts: 225
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    Yippee!

    I'm so happy that he is done with treatment!  Ring that bell loud and clear!  Now it's time to go home and heal.  I can completely understand how you are feeling ... you have a routine and now that will change once again.  I know that stage will be strange for me, too, because during treatment, my husband will be living with his daughter.  When they are done, he will be coming home and I am afraid he will get lonely because I will be at work during the day.  Life is about change and we can always adjust.  I'm so happy that your husband can ring the bell today!!!  ((HUG))  Next thing you know, he will get his first scan and I have confidence you will say he is NED!

  • MMDowns
    MMDowns Member Posts: 318
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    How do I say thank you to

    How do I say thank you to this group? To all of you.  Most likely we will never meet but your are such a big part of my life. Our lives. I tell my husband about you guys all the time. I think he feels like he knows you all too. I know this is the beginning of our new normal and I'm ready to embrace it. All I can keep saying is thank you over and over. Now prepare for questions about healing :)  My love and gratitude to all of you. 

  • MMDowns
    MMDowns Member Posts: 318
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    CivilMatt said:

    ringing the bell

    MMD,

    Pick up your diploma, give your mask to the homeless and print this chapter as done!

    It is true; many of us feel a true kindness toward our rad and chemo oncologists and their support team.  I still like to see my rad onc very much.

    Forget the old normal and embrace your new normal.  My new normal loves cookie dough ice cream.

    Best of luck,

    Matt

    Matt, you were one of the

    Matt, you were one of the first people to respond to my thread. Every time you respond to something I put I fell like I'm talking to the guru of the H&N forum. I relish your advice and words. Thank you for being so kind and truthful and real. 

  • MMDowns
    MMDowns Member Posts: 318
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    swopoe said:

    You made it! We felt the same

    You made it! We felt the same way, but even more so after the first NED. The ENT told us to just live. That was great advice.  Enjoy being together and then going to sleep together at night. Cherish your moments. You are both survivors! So proud of and happy for you both!

    Thank you!!! we will cherish

    Thank you!!! we will cherish our lives together everyday! Thank you for saying we are both survivors. :)

  • MMDowns
    MMDowns Member Posts: 318
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    Yours is a very common

    Yours is a very common reaction, and your questions and concerns are healthy and normal.  You are also very lucky - you have found csn.cancer.org and the people who will answer your questions are amoung the most experienced in the world.  I did not find this site until 4 treatments from the end, but it has been a go-to every day since then.

    I suspect you will find your oncols will not be as attentive now.  That is as it should be, they have others in greater need, but it can be a little unsettling.  Know that while treatment is pushed, hard, and the schedule all consuming, recovery is SLOW.  Some gains come quickly, especially some of the most important ones, others take far longer.  I expected to be 'normal' within two months.  Today, at four months I am gratefully healthy, feel fantastic at times, but know that some of my side-effects will take a year or more to resolve.  I also know I am luckier than some because I have realistic prospects that my side-effects WILL eventually resolve, and the average day is good enough.

    Congrats, now start the count-down to NED.

    I am so glad that you're

    I am so glad that you're feeling more and more like you. I know my husband is looking forward to that feeling. We know to be patient because that will be a slow process. But we are ready for our new beginning. 

  • MMDowns
    MMDowns Member Posts: 318
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    Yippee!

    I'm so happy that he is done with treatment!  Ring that bell loud and clear!  Now it's time to go home and heal.  I can completely understand how you are feeling ... you have a routine and now that will change once again.  I know that stage will be strange for me, too, because during treatment, my husband will be living with his daughter.  When they are done, he will be coming home and I am afraid he will get lonely because I will be at work during the day.  Life is about change and we can always adjust.  I'm so happy that your husband can ring the bell today!!!  ((HUG))  Next thing you know, he will get his first scan and I have confidence you will say he is NED!

    You are so kind. Really and

    You are so kind. Really and truly. Thank you for reading my threads and responding. I look forward to hearing what you have to say and what you're feeling! Life is all about change and one of the biggest lessons I've learned from this is there is no day but today. Roll with it. Let it happen. It's not always easy  but it's doable. Big ((HUGS)) to you. 

  • Captain Australia
    Captain Australia Member Posts: 21
    edited April 2017 #11
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    Alumni

    It's great to be done with treatment.

    One thing to be watchful for:  I've actually read that some patients get hit with depression in the first weeks following treatment.

    Why ?

    Well, the first weeks AFTER treatment are actually worse for most (in terms of human suffering), because of the profound insult the body has suffered, all the damage and inflammation means pain, vomitting, constipation, nausea, water retention, all problems actually INCREASING in severity rather than getting better.

    So you feel elated "oh thank God, it's over!", and then discover that it's not.  (the 8 weeks following treatment are an ordeal, for some longer, some shorter, but I'd average it at 8 weeks).

    Also, you're used to daily having these nurses, doctors, radiologists, technicians fret over you, ask how you're doing, show kindness and concern .. and suddenly that daily pattern is gone.  Yes, you've got your loved ones, but somehow it's not the same .. over the treatment phase you've become a little bit 'institutionalised', and with that cycle over, you're now floating adrift in the river rather than having other people steer the boat for you.

    Lastly, you don't know if you're actually cured or not.  You have to wait 3 months in limbo (but not the cool dance), until you can have a clearance scan where they will hopefully tell you "NED" (no evidence of disease).  Until then, you have all these side effects and problems, and to compount it all .. you just don't know if it worked or not.

    I don't mean to be a downer, just to remind you that your hubby is going to need continuing support and understanding for a while (and anyone reading this going through the same thing might also manage their expectations).

    Sorry, honestly and sincerely don't meant to take a "pop the party balloons" tone or approach, just thought it was important to offer the perspective.

    He won't be a cancer alumni until he's been disease free for five years after diagnosis .. I think that's the commonly accepted measure for a 'cure'.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
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    Ring the Gong

    Congradulations. Enjoy the rest of the ride. Life takes on a whole perspective from here on out. I ride my Harley as much as possible now. Freedom from the mask is a good thing. I actually look foreward to seeing my Nurses, Doctors and Team members every 3 months. We sure did a lot of laughing and crying together.

  • Grandmax4
    Grandmax4 Member Posts: 723
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    Wonderful News

    My husband ( caretaker) took the first week after treatment off work, I slept in a big recliner, had all my necessities right within arms reach. He gave me a bell, in case he was in the back of the house, but, that didn't last long LOL. He went back to work and I was on my own, loved it, after constantly having people around me, I was ready for peace and quiet. Best of luck , and congratulations to you both...being abi-normal is really kind of fun

     

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited April 2017 #14
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    Grats!

    I am following your path, living thru you. I ao glad someones ahead of me to tell me whats next!

  • MMDowns
    MMDowns Member Posts: 318
    Options

    Alumni

    It's great to be done with treatment.

    One thing to be watchful for:  I've actually read that some patients get hit with depression in the first weeks following treatment.

    Why ?

    Well, the first weeks AFTER treatment are actually worse for most (in terms of human suffering), because of the profound insult the body has suffered, all the damage and inflammation means pain, vomitting, constipation, nausea, water retention, all problems actually INCREASING in severity rather than getting better.

    So you feel elated "oh thank God, it's over!", and then discover that it's not.  (the 8 weeks following treatment are an ordeal, for some longer, some shorter, but I'd average it at 8 weeks).

    Also, you're used to daily having these nurses, doctors, radiologists, technicians fret over you, ask how you're doing, show kindness and concern .. and suddenly that daily pattern is gone.  Yes, you've got your loved ones, but somehow it's not the same .. over the treatment phase you've become a little bit 'institutionalised', and with that cycle over, you're now floating adrift in the river rather than having other people steer the boat for you.

    Lastly, you don't know if you're actually cured or not.  You have to wait 3 months in limbo (but not the cool dance), until you can have a clearance scan where they will hopefully tell you "NED" (no evidence of disease).  Until then, you have all these side effects and problems, and to compount it all .. you just don't know if it worked or not.

    I don't mean to be a downer, just to remind you that your hubby is going to need continuing support and understanding for a while (and anyone reading this going through the same thing might also manage their expectations).

    Sorry, honestly and sincerely don't meant to take a "pop the party balloons" tone or approach, just thought it was important to offer the perspective.

    He won't be a cancer alumni until he's been disease free for five years after diagnosis .. I think that's the commonly accepted measure for a 'cure'.

    I appreciate your honesty.  I

    I appreciate your honesty.  I just want to kind of marinate in the good righ now and remember that every person is different.  I know that we have to go through the first scan and that will  be scary.  But, right now I am just proud of my husband for going through this pretty heavy ordeal.  I am proud of me for supporting my husband the best way I know how and I am proud of us for doing this together.  

  • MMDowns
    MMDowns Member Posts: 318
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    Ring the Gong

    Congradulations. Enjoy the rest of the ride. Life takes on a whole perspective from here on out. I ride my Harley as much as possible now. Freedom from the mask is a good thing. I actually look foreward to seeing my Nurses, Doctors and Team members every 3 months. We sure did a lot of laughing and crying together.

    Thank you!! You are so right;

    Thank you!! You are so right; Life means so much more.  It's a precious gift that we will never take for granted.   I have a feeling we will revel in seeing the dr's and nurses every 3 months

  • MMDowns
    MMDowns Member Posts: 318
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    Grandmax4 said:

    Wonderful News

    My husband ( caretaker) took the first week after treatment off work, I slept in a big recliner, had all my necessities right within arms reach. He gave me a bell, in case he was in the back of the house, but, that didn't last long LOL. He went back to work and I was on my own, loved it, after constantly having people around me, I was ready for peace and quiet. Best of luck , and congratulations to you both...being abi-normal is really kind of fun

     

    Thank you so much!  I think

    Thank you so much!  I think he will welcome some peace and quiet but he is also so ready to be back at his school and surrounded by his school family.  

  • MMDowns
    MMDowns Member Posts: 318
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    SuzJ said:

    Grats!

    I am following your path, living thru you. I ao glad someones ahead of me to tell me whats next!

    Follow, follow but also make

    Follow, follow but also make your own way!! You are doing this.  I will be as honest as I can regarding the recovery process.  All I can do is pray for a gently recovery.  How are you??

  • Engelsa
    Engelsa Member Posts: 50
    edited April 2017 #19
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    Ladies

    SuzJ and MMDowns

    I am reading as much as possible. What I am learning from both of you is priceless. Thank you for sharing. You are  already helping both my husband (NPC) and me. 

    I wish you the strength needed to press forward and heal. 

    S

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #20
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    Engelsa said:

    Ladies

    SuzJ and MMDowns

    I am reading as much as possible. What I am learning from both of you is priceless. Thank you for sharing. You are  already helping both my husband (NPC) and me. 

    I wish you the strength needed to press forward and heal. 

    S

    The same to you.  I wish you

    The same to you.  I wish you the strength and courage to move forward, revel in the good, learn from the "bad" and ring those bells soon!!

  • Joel4
    Joel4 Member Posts: 263 Member
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    Congratulations!

    I rang the bell almost three weeks ago and it was nice to put an end to the damaging treatment and start the healing process.

    I was in very rough shape by the end of treatment, very sore throat, and  all food was through the tube.  After one week the pain was mostly gone,  and now I am doing much better.  Still not much improvement with the taste buds and my biggest hurdle continues to be nutrition.  Food tastes bad and I've had it with the tube, but we are making small strides every day.  The mucous is not as prolific and the dryness is not too bad.

    Very happy to hear that the treatment is done and I'd expect your husband to improve greatly as the weeks pass by.  As far as the first post treatment scan goes, I just put that out of mind and focus and improving one day at a time.

    Good luck, and God bless!