recovery after squamous cell carcinoma stage 4

dougk405

35 year old male. I had my surgery on 4/20/16. They removed most of my visible tongue and 2 of my lymph nodes. I developed an infection in my neck after the surgery so I was in the hospital for a month. I came out feeling ok for a while. But I needed to have a wound vac on my my neck for about a month and a half. They finally had to remove it so I could go thru radiation and chemo. I had 30 radiation treatments and 3 chemo treatments. The chemo just made me tired. And the radiation actually didn't bother my until the last week of treatment. Then my skin had a reaction and I had gotten the mouth sores and the throat pain. So my body fought it really well according to my doctor. Now it's about 3 weeks after my treatments have finished and my neck is looking and feeling better. I still have a neck wound that is healing the radiation slowed it down but now it's closing up again and looking better. I have also discovered that I have limited movement in my right arm. I was assigned a speech therapist to help help with my swallowing and met with her for over a.month. She has since discharged me saying I can swallow fine. I just haven't been able to actually eat by mouth yet. I also had a physical therapist for my arm and same thing. After seeing her a few times she said it's up.to me to do my exercises but if I do I should regain most of my motion. I can't move my tongue flap and I now have a speech impediment but everyone seems to be able to understand me. And my nurses were all amazed that I can speak already at all. So I guess thare good. I miss the way I use to be but that's fine now. I have to find out how far I can push myself now and how good I can get. But I'm still hare and get to watch my kids grow up. So that makes me happy.

I'd love to talk to anyone with similar stories and I'm happy to try to help anyone who is about to go thru this. Feel free to contact me.  

CivilMatt

welcome

Doug,

Welcome to the H&N forum, it sounds like you got the treatment of two, sorry about that.

You have come a long way on such a short time line, at this rate you should reach a happy new normal soon.

I was (I like to say WAS) stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  Recovery seems to be continual, but even now at 4+ years I am seeing improvements.  I also got cut loose from speech and physical therapy and I try to make things work.  I no longer hesitate (too much) at making phone calls and try to move around a lot.

Keep improving.

Matt

dougk405

CivilMatt said:

welcome

Doug,

Welcome to the H&N forum, it sounds like you got the treatment of two, sorry about that.

You have come a long way on such a short time line, at this rate you should reach a happy new normal soon.

I was (I like to say WAS) stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  Recovery seems to be continual, but even now at 4+ years I am seeing improvements.  I also got cut loose from speech and physical therapy and I try to make things work.  I no longer hesitate (too much) at making phone calls and try to move around a lot.

Keep improving.

Matt

Good to hear

I'm glad to hear it Matt. I'm getting stronger and home to be able to return to work in the next 5 or 6 months but not rushing things. Glad to hear you're doing well. Gives me more hope into the future. I can't wait to eat again. I tried this morning but I'm not quite ready yet. But soon I hope.

CivilMatt

flip that switch

Doug,

I never worried about eating, even though it took me 7 months to start eating normally (like real folks).  I tried food constantly from day one and was always sampling, but the taste and feel aversion was a detriment to 95% of all foods.  I had some winners from the start, but drank smoothies and protein drinks mainly for 7 months.  I did not care, my weight was good, I felt good and my taste buds needed a big break.  I use  to travel around with a little igloo cooler.

At 7 months I was out on a job, I had no smoothie or protein drinks and I ordered a turkey sandwich, it was great.  A switch had been flipped from taste buds screwy to taste buds new normal.

Matt

dougk405

CivilMatt said:

flip that switch

Doug,

I never worried about eating, even though it took me 7 months to start eating normally (like real folks).  I tried food constantly from day one and was always sampling, but the taste and feel aversion was a detriment to 95% of all foods.  I had some winners from the start, but drank smoothies and protein drinks mainly for 7 months.  I did not care, my weight was good, I felt good and my taste buds needed a big break.  I use  to travel around with a little igloo cooler.

At 7 months I was out on a job, I had no smoothie or protein drinks and I ordered a turkey sandwich, it was great.  A switch had been flipped from taste buds screwy to taste buds new normal.

Matt

hope

That gives me home. Honestly I was starting to eat before the radiation but I have not been able to since I finished the radiation. I have a feeding tube and use jevity to feed myself. I drink water and ice tea by mouth. And I've had some ice cream and some ice pops. But have a hard time especially since I can't feel it in my mouth. But it will get better again. I really miss my tongue and sounding and eating normal. But it is what it is and I will make the best of it.

Doug

CivilMatt

new normal

Doug,

Hopefully, you will adapt and get use to it.  There are not a heck of a lot of choices.  There is no kidding around, many of us have real life changes.  My speaking and tasting and subsequent eating are really, really quite normal.  Put me in a room of normal eaters and you would have a tough time picking me out (until they noticed the frequent drinks).

Most of us improve all the way (or most way) back to a happy new normal.  Accepting the new normal is often times hard.

Matt

Star57

dougk405 said:

Good to hear

I'm glad to hear it Matt. I'm getting stronger and home to be able to return to work in the next 5 or 6 months but not rushing things. Glad to hear you're doing well. Gives me more hope into the future. I can't wait to eat again. I tried this morning but I'm not quite ready yet. But soon I hope.

Me Too

Hi, I also had a similar situation. Partial tongue glossectimy in May..My 5th occurance but this one took a good part of the tongue and left me with difficulty swallowing, eating and the biggest talking. My first one was in 2000 and I was clean for 10 years then it came back in 2010, 2012 and 2015 which were smaller and left nothing much for "damage" but in 2016 took what was my life as I knew it and changed it forever. I like to read the positive attitudes. I'm sorry for all that are going through this... but...we can get through it..