Up Date and Thank you's

wmc

So many in this group to thank. The list is very long, and some we have lost even. Just some, debbiejeanne a special lady that greatted me first and a long time friend. CivilMatt allways there to offer me some very sound advice when I needed it and listen when I needed to vent. A true friend I am privileged to know and always there. Hondo who will never be forgotten, Skiffin16 loves his fishing and a great sense of humor and vast knowledge and shared so much great information that helped me, and all that read it. donfoo who I was fortunate to meet and a wonderful day I will never forget. Thank you Don. phrannie51 always there and an outlook on life all of us need, and very special to me. lornal one of two that truly understood a Laryngectomee and helped me understand I need to learn all I could. This list would go no for 30 more but I can't name everyone that was just there for me at all hours. At night when it's quiet and you try to sleep it seems I found the Abyss. A very dark place you don't want to be in and they helped me out. 

   I had my 6 year checkup Oct 2nd and checkup on the 7th. Still love to hear N.E.D. I know I was one of the lucky ones and had no real issues, other than had my voice removed and you sure don't swallow the same, and your voice is so personal and unique to you as a fingerprint. Had my bout with survivors guilt with being so lucky but most of that was my research and finding the Doctor I wanted to treat my Laryngeal Cancer. As with many, it was where to go. I had Larengeal throat cancer, silent asperation as my epiglottis broke in a way, it just didn't close all the time and I never knew it until hours later and coughed and food was in the mucus. Lost weight and even had the top doctor in town who was an Oncologist to eliminate having cancer, say you do not have cancer so don't worry. Only if he would have been correct. Don't do the what if, as it will only make recovery worse and anger grow which will not help you recover. What didn't help was I also have stage 3 COPD, and LPR [Acid reflux] My Lung doctor found my cancer trying to fine the reason I was losing my voice and coughing blood, a lot and getting worse. So where do I go? I did extensive research as I had cancer but it was throat so I need an ENT surgeon and also good with cancer. Out of all the top in the nation, I chose Stanford Medical for many reasons. I am in California and MD Anderson was very far for my family and Stanford offered me more. They were #9 in the Nation for ENT and #10 for cancer.  Many were like #1 in Cancer but not as good in the ENT and that was where my cancer was. Where you go matters. If I went Local I would not be here. We have a great hospital and cancer program, but not in the top 100.  I chose the Doctor I believed could save me. Only 5 counting me, thought I would survive. I saw the Tumor board and was prepared for everything except what he said.  I was T3, N0, M0, [ but just before surgery I was T3, N2c, M0] 86 lymph glands removed and Neck dissection on both sides.  It was I have a laryngectomy or nothing. My lungs were too bad to survive Radiation or surgery as they could not keep me breathing. 

I learned everything I could and on the second night after surgery and no voice I had a mucus plug and was blocking my airway by 90%.  I rang for the nurst but I got it out first.  I grabbed my flashlight and tweezers and looking in the mirror I went in and got it out. That was when I knew I have to learn all I can if I wanted any kind of life.  Now And for the past 5 years, I have shared what I have learned and things I made with other Larys hoping to make their life better as well. I have my own Support Group in Facebook, which is Global and members in 22 countries. I don't get back here as often as I should, but I stay very busy and my phone is always on to offer support 15 hours a day. I do educational posts and Videos.  I have 14 videos and have been viewed in 117 countries. Stanford uses my Videos, (and even have it in my file that I am their source for the videos they use), as a tool to help the ones about to have the surgery see that their life is not over, and this surgery is not a curse but a gift. It is the gift of life as we all would not be here without it. You go through tremendous changes to your body and mind. PTSD comes with it in a small way as it is a total change and depending why you had to have it differs form everyone. We have a Laryngectomee and full Glosectomee who still can talk. Now it took a lot of work but he flys his airplane and talks to the towers and has for many years.  He is a 25 year survivor. We are told by so many that as a neck breather you can't do so many things it scares persons. Only, we can do most every one of these things. The muscle that keeps food down is cut with the surgery so you put your shoes on before you eat.  We really can not hold our breath. That takes vocal cords. We can stop inhaling or exhaling but it is not the same. You take a big breathe to lift something and you can hear the air hissing and escape. You learn to exhale then lift. Which everyone should do, but most don't.  Like all the cancers, we all are a little different and our body responds differently.  Acceptance is the first step to recover the best way. 

Sorry, this is so long, but those that know me would think if it was short I was hacked. LOL

Bill

Lary's Voice - Open Page.     This is not the group as it is private and all members are Vetted so we avoid ones that don't belong there. It is done so the members can open up and really say what they need to share and get help with.  It is How they can find us. 

CivilMatt

Hi Bill,

Hi Bill,

Nice to see you stop by and to get such a detailed update on what you have been up to and are now doing.  I was very happy to see both you and Debbiejeanne paid Suez39 a visit.  I hope it was helpful for her.  Sometimes it is nice if you have “walked in their shoes” as both you and dj have done and to identify with their choices ahead.

Congratulations on your 6 years NED. I hope you have many more.  With the descriptions of your activities, you will need many more years to do all the things you must get done. I know, that I sometimes feel like I am on borrowed time and I find myself taking on lots of projects.

Enjoy your life and stop by if you ever travel up I-5 going through Oregon. We are just off the freeway in Albany.

Matt

 

 

Sabrina23

Glad to hear you are NED

Thank you for sharing your story and so glad to hear you are NED - praying that there are many more NED's for you and everyone on forum.  God Bless All!

Guzzle

YNWA

Just checking in.  Good on you mate. 

Gary Liverpool UK 

donfoo

thanks for the update

Hi Bill,

Looks like you are going strong sharing your experiences with others, particularly medical practicioners that gain new insights and options for patients with similar conditions. Glad we had a chance to meet and share stories. It's not often that happens so very special that we made the connection. I met P at Oakland airport, barely finished treatments and felt a bit subpar. Matt, still not made it across the border but lots of stuff, all good, keeping me busy locally. Did get into some property along the border so will be up your neck of woods soon.

Bill, again, thanks for dropping in on the old gang here and glad to hear you keep marching along. Shows others in the midst of their battles and challenges that it does end and get back onto the journey called life. 

Sabrina23

Glad to hear you are NED

Bill your story is one of great hope and encouragement and so glad to hear you are NED.  May you always be NED.  I pray that all on this forum be NED! 

God Bless