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Tx is complete today....time to heal..

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

Hi Folks,

Well...today is his last day of treatment! We are on the road to recovery after today. We were told the tongue, mouth, and neck will take about 3-4 weeks to heal. They will slowly start to wein him off his meds. Still keeping the feeding tube in for about 3 months. They are confident that he will be able to start swallowing/drinking and possibly start foods during the 3-4 week healing process. They felt they treated him aggressively and now the waiting begins. Does anyone know when we can expect a scan (PET or CT)? I suppose they will give instructions/appointments after he leaves today...

He feels physically and emotionally drained right now. As a caregiver, I'm wondering how to handle this all with him? He is on Ativan for anxiety and I hope that helps through this process. I know the key to healing is mental....I want to be that mental strength he needs. I feel I've been very strong through this process with him and will continue to be. I can only imagine the journey ahead...but know there will be light at the end of the tunnel.

I know there will be more questions we have as time goes on, but I want to thank everyone that has contributed their time and advice throughout our before and during tx. You all have given me much peace that has helped tremendously with helping my loved one. Thank you all for this. You are all a God sent. I promise I will always be there for anyone that needs me here. Plan on staying with my H & N family to give updates and support for anyone that comes across the "c".

I pray for peace and good health for everyone here on the H & N cancer forum. You all are in my prayers each night.

God Bless Us All,

"Cureitall"
Cris

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

Cris,

Now this is a positive note to send me down the road (driving to Eugene in minutes). Congratulations for a treatment well done. I will be ringing my bell loudly as soon as I thread out-of-here.

I only took my Lorazapam during rad treatments (hated the mask) and on occasion for racing mind at bedtime. I got off all meds soon after treatments ended.

I always managed to drink one meal a day (the rest by PEG) and drank gallons of water daily (still do). My swallowing allowed be to pop my PEG at 2-weeks post.

First scan (on average) 12-weeks post, some earlier, some later. Always controversy on when to scan (your body is still cooking and healing).

Once a H&N warrior, always a H&N warrior. Ask away.

Keep hydrated and keep swallowing.

Best,

Matt

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

We're very glad to be ringing that bell! I can't wait for the healing part of this physically....yet I know the mental will be an ongoing part of the process....but we'll make it through.

You've been super wonderful with all of your advice to me. Thank you for continuing to do that!

~C

ditto1
Posts: 634
Joined: Mar 2012

but he is on the mark. I had some rough times for a about 4 to 6 weeks after RADS ended, mostly the burnt neck. It was tough mentally since all of a sudden the party was over and now what..... well I had my CT scan in October approx 90 days after completion of RADS, CT showed NED and now I have a PET scan on Dec 17th hoping good news there as well. So let the healing begin, and expect a CT or PET or both over the next 90 to 120 days.

luvofmylif
Posts: 344
Joined: Sep 2012

Yay, you did it. You guys crossed the finished line. Doesn't it feel good? John was doing pretty good till Thanksgiving...our last treatment was last Wednesday, but then the next neck became very burned with oozing open areas. The dr did give us silvadene which we started yesterday so hoping it helps soon.

But, I know you are relieved and sound alot stronger then me. I am a weak caregiver but trying thanks to all on this network. Keep in touch.

Oh, we see the surgeon for a scope in December and then have a CT scan in January and a PET scan in February.

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

Cris,

The mental part is like a flow chart of yes and no, did I make the correct choices or not. As long as life seems to be ok for me I try not to worry about the “what ifs” of cancer. Now Matt’s reality is far different from others and I don’t pretend to know what I would do if things turn south. I just try not to borrow trouble. It is like before cancer I did not dwell on getting cancer and when I got cancer I mostly went on autopilot. In many ways it is all a terrible dream, a blur. We all witness incredibly difficult and life changing decisions reveled on this forum everyday. It can’t help but humble and scare the pants off a person. Hopefully, your choices will be confirmed by many years of health and happiness.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3791
Joined: Mar 2012

WHOO HOO!!! Yes the next few weeks will continue to be tough...BUT...the lack of chemo, and the lack of rads, along with getting rest "at will"...he will start to notice small things after the first couple of weeks. Like, his afternoon naps will be shorter, and his energy will little by little return. I got a puppy right before my second treatment of 5FU (silly me)...I could barely walk acrosst the pasture with her in July...my last chemo was Aug 28th, and by the third week of September I was taking her to the park everyday. I was determined to build up my strength, and just walking did wonders. I had my last tube meal somewhere in the middle of Sept, also, tho I didn't get it out until the end of October. Food didn't taste all that great, but my interest in it was high, and I knew I'd feel better with the real thing. As Matt said, swallowing is SO important. I ate a lot of Progresso soup, dipping French bread slathered in butter into it.

It's a slow recovery, and I'm still noticing the small things...things that two weeks ago were a problem are less of a problem now...(my eyes really took a beating from chemo, and it's only the last two weeks that I've had improvement)...

Emotionally, we all suffer the shoe dropping thing to different degrees...but I'm sure that too will become just a part of the new normal. When I thought of "new normals" in the beginning, I thought I was going to have to power thru those, but the mind/brain is an adaptable thing...we adjust gradually until we forget what the old normal was like.

I'm so excited for you two...your man is going to come out the other end of this tunnel just fine...I just know it.

p

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

I will never forget that five days after dx I got on this forum and was looking for some hope and answers. You were my first responder and you had the most comforting tone in your words that I felt like you had your arms wrapped right around me....really...I will never forget that. You had been through so much yourself, yet took that time to help me in that very beginning...dark time.

For that, I thank you my dear friend. You are a blessing.

God Bless,

~C

MichelleLee71
Posts: 13
Joined: Nov 2012

Yeah so excited for you two. I just finished up my rads August 24th. My throat was my biggest problem. It hurt sooo bad. I kept taking my pain meds for a couple weeks after and then weened myself down to just tylenol. My throat took about 7 weeks to stop hurting and I've only been eating for like 4 weeks now. Finally got my feeding tube taken out 2 weeks ago. I know everyone heals at a different rate but I healed a lot slower than what they had told me. (which they told me in about 4 weeks I should be fine) NOT. LOL.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am so glad you are through with all the treatments and on to the healing phase. I know this has taken its toll on you, but want you to know how appreciative I am for all you have done for me. When we first started this journey it seemed as if we were going to walk it together unfortunately things changes. As sad as that is for me l, I want you to know I am very glad we met and kept in contact. Its been a huge source of comfort. So enjoy ringing that bell :)

AJW1966
Posts: 69
Joined: Nov 2012

Congratulations! I'm 3 away from the bell and it feels like an eternity!!!
I've been told by my nurse that effects typically last 2-3 weeks after treatment stops, but everyone is different. Then you should notice some turn around slowly happening.
There IS light at the end of the tunnel....just look how far through the tunnel you've traveled already.
God Bless!!

Alan

phrannie51's picture
phrannie51
Posts: 3791
Joined: Mar 2012

from the bell, and at the end of this week, you'll be all done, Alan!! We're counting down with you! Yes there is light at the end of the tunnel.

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

wow, 3-4 weeks is terrific. I'd be pretty happy to hear that. but if it should take a wee bit longer...a lot of us have dealt with that too. patience is the name of the game now.

my PET scan was 3 months out, and I wish they'd waited a bit longer. I was pretty sure the rads were still cooking, and sure enough the scan showed a hot spot. that's just another source of anxiety, even when they tell you it's most likely just the rads.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Definitely hoping they did indeed "Cure It All"....

Like mentioned, more realistic improvement will be seen starting around 6 - 7 weeks post. But he might see some before... It's just reeeeeallllly slow.

Taste and saliva should start to improve somewhere around then also...

But he can count on having a bottle of water with him 24/7 (probably already does).

Both wll come back nearly completely more than likely. Taste before much saliva, but still slow..one day forward, two back.

Tons of unexplained aches, pains, and discomforts that will scare the shitxnoids out of him for awhile.

Slowly your confidence levels return through many consults with the MDs, and time itself.

Tell him to hang tough, it only gets better from here on out...LOL.

Though he might not realize that for a month or so.

Also, like mentioned, the mental part can play into it during this period...

For several months it's been on the go every day pretty much. Someone always looking after you and scheduling things for you.

Now you are cut loose, just the waiting game to see how sucessful treatment was...

Just tell him to realize, there is a huge population just on this site that have been treated very sucessfully, and going strong...percentages are in his favor.

Best,
John

cureitall66's picture
cureitall66
Posts: 868
Joined: Aug 2012

Thank you all for the encouraging words and advice. I always seem to gain more mental power each and everytime I get on here....which passes directly onto him.

I will be printing these off and share with them with him.

God Bless,

~C

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