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Update March 4

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

I haven't been on for awhile and wanted to update all of you on how I was doing - first physically I feel fortunate - I finished my treatments on Jan 17th this year - 7 chemos and 35 rad treatments for tonsil cancer - the last week was the hardest - just a few days shy of the last rad treatment I stopped drinking Ensure and moved to tube feeding with osmolite as well as hydrading with gatorade - a section of my throat just go too sore - so I am glad I had the PEG tube - lost my voice for about a week because of the soreness - gradually got it back and my kids say I sound the same - about 2-3 weeks after the last treatment I started eating the pudding and yogurt and started drinking gatorade and water from my straw water bottle - eventually I switched to water it stopped tasting like swamp water Phrannie - yeah - then I just started eating everything that did not taste bad - the nutritionist in my "dance' team told me I needed to eat even if I could not taste - so I broke through and did it - for the past few weeks I have eaten just about everything in sight -and I can taste it - pancakes, sausage, cerial, chicken, cheese, crabs, just haven't had a burger or steak yet - did have a hot dog though, sorry Matt couldn't wait to meet you and have one - but I  did hold off on the relish - now though I am adding relish to tuna again - I have gained back 10 lbs from the 20 I lost, am back to work and exercising and building muscled again - I have good spirits and do just about anything I can - except chop wood and lift heavy objects - have to wait until the port comes out - which leads me to waiting for the April 14th PET/CT scan and Apr 15th check from the doctor on the scan - I am staying even keeled, my wife is positive - the docs say I have responded well to treatment but of course they need to see the scan to tell me to get lost and they don't want to see me again - so that is where I am now-

I want to again thank all of you who got me here - I just said yesterday one of my boys that I never thought that last november right before thanksgiving that Jan 17th woud ever arrive - and now it is March - well it is the new me - brushing my teeth more often, still rinsing, still using my therabite to keep my mouth from not opening too much - and still with my PEG and port in - but God willing things will go well Apr 15th - so thanks all of you for all the support along the way -

There is one thing that has bothered me for several weeks - I was reluctant to ever come back to this site - the reason I discovered after taking some time to think on it was that I had finished my treatments, I was starting to eat, drink and get back to doing things and suddenly it occurred to me that I was running from the cancer - this notion took place in my mind that I had somehow shed something after my last treatment that I was somehow distancing myself from this horrible disease that I could see trying to cling to me, trying to grab at me and get back on me and in me and I could see myself out in front just barely but staying ahead and I wanted to more than ever to put it behind, to somehow figure out some other way to forget that I had somehow lost a few months of my life to this horrible disease - so I avoided coming on this site, I just couldn't bring mysefl for sometime now to come back on - I am sorry for that because all of you have been so kind and helpful  - so I was wondering has anyone else experienced that - as I have said many times all of you got me through this, I mean really go me through this - so I am sorry for not being around and for not lending a hand when it is now my turn to help out - I will try to do better and stay in touch and help out -

All the best to everyone here and keep fighting, keep living, that is what I inted to to  - keep living -

Love you all

Steve

 

ps - okay on the lighter side (this is really me, usually always happy and positive - just ask my wife - what an angel by the way) I hardly have to shave anymore but there are a few hairs that grow in a mutated rapid fashion just under my chin - it is funny to look at, but almost everywhere else, soft as a baby's bottom - :)

KTeacher
Posts: 965
Joined: Jan 2011

All I could think of was the new Disney song from Frozen!  As far as I know, Skiffin is the real die hard (and I am thankful for that).  I do miss some very wise people that used to be active on this site, but I know that they are living life.  Hondo left for awhile to recharge and work in ministry but he came back, I think that he missed us.  I come and go depending on how treatment is for me (I've played this game 4 times so far). 

Warning, warning!  If you do not return we will all miss you.  Know that you will probably have scanxiety a week or so before PET and MRI.  Hopefully you will meet NED soon.  The doctors will not tell you good-bye for some time.  They like to poke and prod us for a good while after treatment.  I think that Skiffin still has yearly appointments with his main doctor.

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

You made it out the other side, and are doing what you're supposed to be doing....enjoying hell out of having kicked some cancer ass!  You're on the true upswing, now.....feeling better, feeling stronger.....and getting the PEG tube and the Port out are milestones in themselves.  I don't think your Dr. will be saying goodbye for a while, but the appointments get farther apart (after going to Dr. several times a week, getting a month break between them seems like true freedom!).  If you get nervous about your scan, come here and talk about it.....there isn't a person here who hasn't suffered from scanxiety to some degree....

It seems that many people who join this site when they are diagnosed, move on.....and then come back and check in, but don't hang around.....some of us are die-hards.....but we do like it when folks we've known pop in and give us updates.....

p

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

Steve,

First and foremost, congratulations on getting through the biggest milestone of completing treatment! Glad things are turning around for you.

I am a caregiver on here, so obviously my loved one did not want to take part on a forum. I told him I was getting on here to help get him some support, and I certainly did, for him as well as myself. He was just one of those people that did not want to deal with "talking" about it. Maybe that's why there are plenty of caregivers on here also. He also saw that my strength was coming from this forum and he has been very grateful to everyone for that. In fact, I read many things to him daily and he gives me some writing advice to them. He has even private messaged another fella on here to share things. He wants to help if he can.

So, my point is, don't feel bad about distancing yourself from this forum from time to time. It makes perfect sense what you're saying, you naturally want to ignore as much as possible about having cancer. Sooner or later you somehow contribute, even if it's behind the scenes as my loved one is. We all want to pretend that none of this happened and ignore the whole thing. But, it did happen, and we won't let it get the best of us. We have a new life, a new beginning, as many of us look at life a little differently now. Some days will be tougher than others, but time will help us to accept what has happened and start enjoying life again....maybe in a different way. It won't ever be like it was before cancer....but, we can make the best of it today knowing we have survived it. Together we all get through this with the support of our family, friends and our family here on CSN.

God Bless,

~C

 

luv4lacrosse's picture
luv4lacrosse
Posts: 1402
Joined: Jul 2010

Great to hear you are bouncing back. I think the initial treatment, surgery, rads and chemo is the biggest ass kicker any of us will go through.

I too left the site or greatly reduced the amount of time I spent here as when I got my NED from my docs, I wanted to go back to my pre C life. It's completely a normal response, and do not for one second feel bad about that.

All the best going forward.

Mike

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

Yep, that's me..., LOL...

Each of us have our own reasons and time frames of participation here. That's one of the great things about the people and site, no expectations, no pressure.. Share if you like, take what you need, give back what you want.

I just haven't figured out at what point that I either can't contribute any longer, or don't have the desire.

At this point and time, I haven't figured that out, LOL...

Maybe for me, I want to be reminded of the ordeal, where I was, where I am, where I am going...

One thing that I have figured out..

Cancer has actually made me a better person than I was before..

Things that I thought were big, now aren't so much.

The things that I thought were small or unimportant, now are huge.

Best,

John

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

Steve,

Congratulations for arriving on the other side in one piece.   I think you have to get really old to forget you ever had cancer.  Good luck on that.

So you had a hot dog without me, maybe we can relish one together later.

Drop by H&N land anytime.  I always like to hear updates and fresh ideas.  For instance every time someone raises the “mucus flag” I always forget to mention the suction machine (radiation brain).

Please ask your wife to answer her phone when I call, I want to quiz her on the happy, positive guy she is an angel too.

Have a great “new normal” you “abi-normal”guy.

Matt

donfoo's picture
donfoo
Posts: 1283
Joined: Dec 2012

Hi Steve,

Glad you dropped by to say hi. Most of come here and many leave once clear of the major side effects post tx and go back to their lives. My journey is a bit unusual as I have hung here for much longer than the typical member. Very recently I caught a glimpse of seeing the exit door and making a dash for it.

My doctor visit today is on a six week schedule for a poke and scope. After the examination I asked him about long term prognosis, something I have avoided for over a year. Since my mental and physical health is super and I really feel better than pre cancer, my own mind started playing tricks on me, allowing me to start believing that I am better than before. After some discussion, the reality is cancer changes us forever and we are NEVER able to return and be the same as before. 

Even though much is still unknown for HPV+ HNC, it is clear current therapies are better at slaying this beast but no matter what, we remain cancer survivors and forever assigns us to a special high risk category. Given my great sense of well being I let myself fall into this false sense of being free of everything cancer. I had the biggest laugh with the doctor as I stated nobody who is healthy is getting a scope down their throat every six weeks looking for cancer.

 

Yes, the reality is cancer survivors are never going return into the mainstream of the general population. Recently, I looked at a morbity table and thought how wonderful that after 2-3 years post, the survival rate stops falling and levels off. How great! Then you look real hard at the line when it crosses out the right and at best it is crossing 90%, most of the lower. That is the reality folks. Line up 10 friends and shoot one dead, 9 live, yes 90% survival rate. The reality is sobering. Our heatlh is forever compromised.

I recently started a great job with even greater benefits. What got me into this place is I am faced with selecting various insurance options such as supplemental life and disability. Feeling so great, I honestly pondered long and hard deciding if I should elect these extra coverages. The chat with the doc today broiught me back to reality. In a very friendly exchange it was like how stupid it would be for a less than one year cancer survivor not to sign up for as much insurance as was offered, especially if it was available at very very low premiums.

Your post is so timely with my current mental gynmnastics about leaving cancer behind then almost certainly at some point feeling some sense of continued attachment with that experience. Some disappear, some drop in occassionally, and some hang around for the duration.

The same old saying, "everyone is different" applies to cancer survivors forever.

Glad yoiu ddropped in,

Don 

PJ47's picture
PJ47
Posts: 334
Joined: Sep 2013

Just had my first follow up today since completing radiation. All was good.  Finished tx. Dec.27.  At times, I perused this site several times a day and when unable to sleep.  Lately, although I do not feel I am running from reality, I just need a break from it for a few days at a time.  Since I am just 2+ months post Rads, I don't always feel I have much wisdom to offer others, but often will chime in if it may be helpful. Do what you are comfortable with as there are no right or wrong ways to manage this.  It is certainly ok to focus on and be in the moment and live your life.  Enjoy,

PJ

 

 

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Thanks everybody - I am still amazed at how I can feel better just after reading your posts - thanks for the humor and the serious side - I will smile today and try to make it worthwhile - thanks Don and Matt and PJ, John, Mike, C - KT and Phrannie - and all the other lurkers hanging out there and helping out - have a great day

By the way - I live in Maryland - just wanted to throw that out there -

Steve

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

Well, we will try to not hold that against you, LOL....

JG

PJ47's picture
PJ47
Posts: 334
Joined: Sep 2013

Went to U of MD College Park for under grad and U of MD at Baltimore for Grad school!  Remember slow and steady wins the race!  Ha ha

I also monitor real live turtles off Masonboro Island in NC

Enough terrapin talk,

PJ

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