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Re: I'm So Scared [Re: Dizz_zzey] #198873
08-16-2019 08:01 PM
08-16-2019 08:01 PM
Joined: Jun 2019
Posts: 47
San Antonio, Texas
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Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 47
San Antonio, Texas
Yippy! Awwww. So happy your able to be such a trooper.
Don’t over do it lady! Big big hugs.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: I'm So Scared [Re: Dizz_zzey] #198879
08-17-2019 09:04 AM
08-17-2019 09:04 AM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,409
PA
I thought I recently wrote you a reply? Oh well, heres what I wanted to tell you, Dizz...

CONGRATS!!!! Ive been waiting to see an update from your surgery. We all know how difficult it can be after going thru such a long, complex surgery. Sitting in the chair seems like a regular everyday common occurrence but to someone who just had a major surgery so recently, it really is a big deal!!!

Sounds to me like you are making great progress. Keep up the good work!!! Hope you are able to get rest and remain as pain free as possible.

Keep us posted when you are up to it. We're all rooting for you smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: I'm So Scared [Re: Dizz_zzey] #198894
08-19-2019 06:31 AM
08-19-2019 06:31 AM
Joined: Jun 2019
Posts: 47
San Antonio, Texas
M
Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 47
San Antonio, Texas
Thinking of you this morning Dizz and hope your days are progressing in a positive light. Remember, they said you’ll have good days and bad but try hard to be positive. Sending positive vibes your way everyday Dizz. Big hugs!


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: I'm So Scared [Re: Mokie] #198895
08-19-2019 12:40 PM
08-19-2019 12:40 PM
Joined: Jun 2019
Posts: 129
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Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 129
Hey Mokie and Chrissie,

I'm am doing well in some areas, so no more drains or cannulas. Hurrah! I'd had so many needles in my body that my veins were collapsing.

I'm really struggling with swallowing. I know it's 6 days since the surgery but I thought I had been swallowing liquid but turns out I hadn't been properly swallowing.
I only have a sliver of base tongue, the other mass is my free flap and that is a lump of flesh that won't move. Any hints or tips? I tried to use a straw but I just couldn't suck! I tried a teaspoon of water but don't know how to get it into the area to swallow.

Also I'm frustrated with my trackie. It's been fitted in at an odd angle and it's really tight. I've done well with using the speech valve but really struggled with a closed cap on. I know part of it is because my throat will still be swollen but isn't another part is the actual trackie itself, sitting in my wind pipe.

So are there any hints or tips about how to be comfortable with a trackie with a closed cap on to prepare for it being removed?


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: I'm So Scared [Re: Dizz_zzey] #198899
08-19-2019 06:41 PM
08-19-2019 06:41 PM
Joined: Sep 2018
Posts: 9
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Mike young Offline
Member
Mike young  Offline
Member
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Joined: Sep 2018
Posts: 9
Havent been here for a minute but im very glad to read your surgery went good for you. Sounds like you are doing even better than i did after.
I know the feeling of wanting this all to progress much faster but take it easy it will get harder before it gets better. Everything will fall back into place when your body is ready. Swelling will take alot of time to fully go down. It took me a couple weeks before i could swallow water but it did happen.
First thing i tried was ice chips. Just slowly let them disolve and swallow like saliva. Only a couple peices at a time. Very hard to get things over that new flap. I never knew how much work my tongue did. I bet within the next week you will have no problem using a straw. My speach therapist showed me gow to use a large syringe to get stuff over the flap that helped alot also. First thing i had was a smoothie in the syringe it was so good i cried like a child.
You got this. Just hang in there!!!


Mike young
Re: I'm So Scared [Re: Mike young] #198900
08-19-2019 07:33 PM
08-19-2019 07:33 PM
Joined: Jun 2019
Posts: 129
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 129
Hello Mike!

I'm craving an ice coffee, lol. I wouldn't even mind it in my feeding tube right now lol.

I was recommended ice chips, so I'm going to give those a go. I realised that I can't s where everything is in my mouth, and my swollen head won't let me move as much as I'd like. But I did swallow an ice chip and that felt good!

In the morning they are either going to remove my trackie or put in a smaller one as this one is trying to pull out of my skin. I'm also hoping to have the doppler removed (machine that checks blood flow of flap) as that too is pulling on my skin.

It's currently 4am, I'm on a nebulizer to help clear any gunk from my chest. I don't get much mucus but its always a little bit that needs to be cleaned out regularly to not build up. It's quite nice this little ritual with the night nurses here.

How are you doing Mike? How's the healing process going for you?

Last edited by Dizz_zzey; 08-19-2019 07:34 PM. Reason: Reply to correct person

F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: I'm So Scared [Re: Dizz_zzey] #198905
08-20-2019 06:15 PM
08-20-2019 06:15 PM
Joined: Jun 2019
Posts: 129
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 129
Today is 7 day post surgery and everything is out except for the PEG and 2 cannulas.

I've even had some stitches taken out.

I saw the site left after they used my left arm as the doner... Wow I wasn't expecting that at all.

But I'm getting better with ice chip swallowing. I've been asked (by my speech therapist) to make different flavored ones so that I don't get bored with just ice.

The hospital teams are all calling me "Over Achiever" because I've been getting very focused into "what do I need to complete to get me home" mode. Lol

Hope you're all OK


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: I'm So Scared [Re: Dizz_zzey] #198907
08-21-2019 05:40 AM
08-21-2019 05:40 AM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
You have made excellent progress in just one week!!! Sounds like you are healing up nicely and doing very well with the ice chips. It sounds like such a simple thing to swallow ice chips but it really is significant progress smile

Im sure your hospital stay seems like its already been a very long one. Hang in there, with such great progress you will be back home in no time.

Keep up the good work!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: I'm So Scared [Re: Dizz_zzey] #198912
08-22-2019 09:57 PM
08-22-2019 09:57 PM
Joined: Jun 2019
Posts: 47
San Antonio, Texas
M
Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2019
Posts: 47
San Antonio, Texas
Hi Dizz! I know your dealing with a lot, but you sound in good spirits. Maybe you do just need a smaller trach to be more comfortable. The trach can cause a lot of irritation that in turn causes a lot of mucous production. Suctioning is important. Glad to hear your night nurses are all over it. Mike had a good idea with the ice chips to get use to swallowing again. Take your time Dizz. I know you want to get some relief from that trach, but if you still have a lot of swelling is may be a necessity for awhile longer. Good they’re going to try a smaller canula.
I’m happy people on here are helping you. Don’t hold back complaining to your nurses when your uncomfortable. They are skilled in knowing things to do that may help. Rest well angel. Keep us updated. Hugs.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
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