Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Dizz_zzey #198873 08-16-2019 09:01 PM
Joined: Jun 2019
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2019
Posts: 62
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
Dizz_zzey #198879 08-17-2019 10:04 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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
Dizz_zzey #198894 08-19-2019 07:31 AM
Joined: Jun 2019
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2019
Posts: 62
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
Mokie #198895 08-19-2019 01:40 PM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
OP Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
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 no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #198899 08-19-2019 07:41 PM
Joined: Sep 2018
Posts: 9
Member
Offline
Member

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
Mike young #198900 08-19-2019 08:33 PM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
OP Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
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 08:34 PM. Reason: Reply to correct person

F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #198905 08-20-2019 07:15 PM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
OP Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
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 no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #198907 08-21-2019 06:40 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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
Dizz_zzey #198912 08-22-2019 10:57 PM
Joined: Jun 2019
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2019
Posts: 62
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
Page 2 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5