Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Can you get the phone app to turn typing to speech? It can work well and might amuse your little ones.

Hmmm. I had bad swelling after my buccal mucosa surgery and felt like a puffer fish. But the tongue wasn't too bad. I believe they can debulk the flaps.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Hi Gayle - So glad you found this place! You will continue to get lots of support and information here from people who have been where you are. It can be challenging to help little ones to get used to your new routine, but they can also be such a blessing in helping you to concentrate on more happy stuff. When my son was diagnosed with OC, his little daughter was five and when she saw the "home made" sign language we were using, she quickly adopted it - i.e. thumbs up for "yes, shrug shoulders for "I don't know" etc, and and if the "talking" people can try to ask "yes or no" or questions that have choices like "Do you want 1-eggs, 2-soup, 3-ice cream?" (holding up 1,2,or 3 fingers) then you can hold up one, two or 3 fingers to answer. You could also make yourself a chart with squares and pictures and just point when somebody asks you a question. If you are in one room and the children in another room, you can call them with a little bell or a toy that makes a sound. You and the children or anyone else around will develop your own sign language. I had to laugh when, one day after I had brought my 5-year old granddaughter something to eat and asked her how it was, instead of saying "fine" or "really good, Mimi" she gave me the thumbs up sign. Any kind of change in life takes getting used to and with OC, progress can be slow but once you get into the routine of things, you will feel more in control and feel a lot better. Your little ones are also having to get used to the changes, but once they see how they can help, they will feel better, too. Especially if, when they do something that pleases you, you can express your very exaggerated appreciation!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Nov 2014
Posts: 66
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Nov 2014
Posts: 66
How's it going? I was thinking about you.



HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Jul 2014
Posts: 42
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 42
Hi Gayle - I hope you are starting to feel a little better now. I was also a non-smoker, worked out regularly, and ate healthy, and rarely drank. I was diagnosed last year at 38 and in August I had a partial glossectomy with a radial forearm flap. I was fortunate that my initial recovery went pretty quickly, but now it feels like my recovery is at a standstill so I feel your frustration. It does get better. I found that focusing on the simple accomplishments really helped lift my spirits. Never thought that at my age and prior health I would be so excited to be able to get out of bed on my own, or use the bathroom alone. I decided to see it as being kind of a fun challenge - it was like reliving being a toddler all over again with all the excitements of simple accomplishments and simple joys. Now that I am mostly recovered, I am focusing that same energy into enjoying finding out my new 'normal' - what foods taste good now, what things do I now want to focus my energy and time into (and what do I not want to do anymore), etc. Just know that there is a community of supporters if you ever need to chat.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

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