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Constanly concerned

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi everyone, you all seem to be so much help that I wanted to come right here to help me deal with new issue. Ever since being in hospital with apiration phenumonia due to new tx of Dysphagaia, constantly paranoid of cough or gergal sound which is usally phelm to cough out(salvia so bad, to dry to push salvia without water and not allowed water, ugh!) Mostly its clear, when some has been stuck awhile greyish. In between insurance and don't want to run with every sniffle, but so far I have. I just seem unable to convince myself, that I can get a cold, sinus infection even bronchitus, its not always phenumonia. I feel like any idiot even posting this, however, any feedback would be helpful. I feel as if the Lord led me here for earthly help that I have been lacking for 12yrs., it was easier pretending it never happened! Rachel

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

12 years!!!  Holy cow that is just wonderful.  I'm not so sure I will be the best help here since I am not nrealy as far out as you, I'm only 14 months from my last radiation, but I can certainly relate to "that constant nag in my head" that "it's back" ...it's a battle, battle, battle.  However my ENT / and Seattle Cancer Care Alliance team told me when I was there last that in the first 2 years recurrence is 35% (ish) and after 2 years that same recurrence rate drops to less 3-5%, my other ENT told me just under 10%.

So looking at that, your picture of health (you look like you take good care of yourself) and that fact that you are still young ....as a statistics man I don't think you have much to worry about.  Then you ad to that you already know what to look for and if you really need peace of mind just go have an ENT do a scope / finger exam once every 3 months (mine cost about $300 to have it done each time) ..or if you have a stash of money I guess you could pay just under $5K for a CT scan w/ contrast 1 time a year in the H&N area and chest.

I throw no stones like I said bc I totally get that nagging voice in my head.....but I have to tell you 12 years, wow....I'm looking foward to being there one day ..and I'm sure someone with better knowledge and experience will come along shortly.

Keep us posted ..and it may not matter, but your post tonight and being 12 years out sure gave me a boost and I thank you for that.

Best,

Tim

wrhbounds's picture
wrhbounds
Posts: 38
Joined: Jan 2013

Hi I've been at this for a long time this month makes 14 years after the first 5 years.I thought it would be over any more surprises but after 4 more great years. I had to have lower jaw bone replaced. I have learned one thing take all the good times forget the bad life is to short to worry. Stay strong 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi! Congratulations on your long survival years. I wouldn't not count that first 5, you were still cancer free, so that makes 19..YEAH FOR YOU! Your advice is so true, heard it before, I think it time to put it to pratice! I have to much to live for and be happy about and to look forward too than to spend my time worrying. So I am really going to put the effort in to shake it when it creeps in.

Thank you very much, sometimes advice has to come over and over again till you decide to listen!

Rachel

HobbsDoggy
Posts: 165
Joined: Feb 2013

I am just 2 months one week out from last radiation. Will go on March 4 for scan and then on March 14 for results. Will be a very long 10 days waiting. Hope they can tell me something good before I see the doc. One thing the doctors at Cleveland Clinic told me is that stats do not mean much as they are spread over so many different types of people and cases. That for neck cancer, especially HPV positive, but tor all neck cancer cure is the goal as it is very possible with that type of cancer. To think about anything other than a cure is counter productive. That helps me most of the time, the rest of the time I am scared and can't let it drop.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

I wish I could tell you the fear of the scope check up or scan goes away because it hasn't for me and I am in 13th year from date Dr said it was all clear! My last episode of late term rad effect has me determined to not hide in the sand anymore and just trust God. Ultimally I am not in control anyway ,He is, so I decided just to let Him be in charge of the direction my life goes. This new thing, I just have to remind myself every cough, sneeze, or sniffle doesn't mean pneumonia again!

Thank you for your post and congratulations on finishing your treatments. The best feeling is the day the say you are cancer free and I am sure that is what u will hear on March 14th. Go to the scans knowing that if you ask, the Lord will go with you!

God Bless and please up date me when u know, I will be praying for you!

Rachel

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Hi Rachel,

Having read several of your posts, it's quite obvious your faith is strong. Strong enough, I dare say, to totally put it in His hands and deal with each trial and tribulation one step at a time, knowing He is right there beside you. A little fear and worry is necessary for our survival but too much can be crippling and prevent you from living. Matthew 6:26

I look at this site and the many here who have beaten the beast and have come to realize that the term "survivor" is inaccurate. I would say that the many here are "living". To merely survive would be more like just going through the motions. Perhaps it was His intention to provide affirmation to what you already know in you heart. Having been on the journey as long as you have, hearing your words of faith is insprirational. 

On Monday, moments before I was taken to the OR, I was in the intensive care emergency room. Everything was set to go. Papers were signed, risks were explained etc. When you're listening to all those words in the midst of the frenzy around you, you don't always "hear" them. Not coming out of it alive is a posiibility. Small in some cases and larger in others. With my situation, the seriousness was emphasized several times in a very short time period. Things were happening so fast that I really didn't have time to think. A nurse came in with some final preparations and she looked at me, knowing how serious the situation was and asked if I was Ok. I knew what she was asking. You know what? I truly was. I had some nervousness but it wasn't fear. I truly was Ok. I don't always understand why things happen but I do know that eventually there will be an "Ah Ha" moment and it will all make sense whether I get it here on earth or afterwards. 

From what I've read, you've adapted to every situation cancer has thrown at you and you continue to "live". With the strength I see in your words, I see you doing the same thing in this situation and maybe even getting a few counter punches in at the same time. 

I understand your concern. I believe we all have them. Heck, I know it's on my mind when I dream about having cancer. While this beast has consumed a part of my body and caused me great pain (with more to come in treatment), it hasn't consumed my spirit or every waking moment and that is one thing I have control of. You do too.

I hope I'm not just rambling and this makes sense :)

"T" 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

T.

It all made sense and I appreciate every word! Maybe when you said OK it was because you have truly surrendered and realiize He is in control of your path. I have said that about ahha moment, I don't think there is one, I think there are many.. on a persoal note, when I was dx I was 28 and married for just 6months, I wanted a baby so bad, it got put on hold to go through treatment. After everything was clean and got the go ahead to try, nothing happened. Tests revealed I seemed ok, and ex had swimmer trouble so we went with artifical, 3 heart wrenching years later I got pregnant in April of 2003 and was due 1/10/2004, in July I miscarried. I was devestated! Around sept. We tried again and the session failed. I came home one night went in my room fell on my knees and began to yell at God and Jesus, "Hy me, why cancer and infertility, all my life I had a desire to have a child, it has to be my calling, why did You take my baby, what have I done to make You punish me so, why won't You bless me?" I fell asleep crying, so help me this happened, that night I dreamed or had a vision of Jesus with white garment and the crown of throwns(not bloody, just there and peaceful) I was so close i could raise a finger and touch Him and I said, why won't You bless me? He leaned in, wrapped His arms around me and whispered in my ear I already have. I woke right up, goose bumps every where and thought immediately how selfish, He just cured me from cancer! In May my obgyn called and said he had a patient who wanted to give her baby up for adoption(I had been on his list) we spoke, went to dinner that night found out the baby would be a girl and she would be Irish like me and Itlian like her dad, and one month later Faith was born, she was concieved in September. My ahha moment there was if I had carried my baby girl full term I would have missed out on Faith, and I was meant to be her Mom. In my heart I know that the soul of the girl I miscarried is the soul of my Faith.

So all that being said, that along with surviving the beast, and "living" the last 12 going on 13 years is why my Belief is where it is! Now because I know all of that, that is why I get upset when I am weak and let fear take over, and as I said in my last reply to the last warrier waiting to hear the words I already hear, Cancer is gone, I need to stop worrying and start living and practice what I preach.

I don't know what your surgery was for, but I hope you are ok! Please respond again and let me know how you are.

God Bless you,

Rachel

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

We're going to have moments of weakness. It's our nature as humans and it's Ok. That's an amazing experience and one that profoundly affected you in a positive way. It's always humbles me when I see and hear about something good arising from the ashes of tribulation.

I had a neck dissection (two large tumors, 24 additional lymph nodes) a bilateral lingual tonsillectomy and BOT biopsies done Feb 7th.... Rough recovery and then some. The rest of the story you can read in the "A Rare Breed Indeed" thread I posted Tuesday. 

I'm doing Ok.. a little rough right at the moment (that's why I'm up posting) but getting better. 

"T"

CivilMatt's picture
CivilMatt
Posts: 2873
Joined: May 2012

Hi Rachel,

 

If you are out in public or talk to other people or touch any surface where germs can live, you like the rest of us can get a cold.  I imagine you will want to be careful, but I think you will know the difference if you get an infection.

 

Just be careful and most of your phlegm will be harmless.

 

Best,

 

Matt

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