#55356 08-10-2004 03:15 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Good for you Vickie! I tell you, my speech therapist made a HUGE difference in my life. She helped me get the confidence to start eating soft foods again, etc. We took it step by step and I left each visit feeling better about myself. God Bless you, I think about you often! Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#55357 08-10-2004 05:10 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Miss Vickie,
I am so joyous to hear the great news! I have been praying so hard for you and He has come through again. I am now praying for great results from the speech and swallowing therapy. If there is anything I can do to help you just let me know. I am so looking forward to meeting you in Las Vegas.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55358 08-12-2004 11:43 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Dear Miss Vicki,
So glad you are now going to get speech and swallowing therapy, but you should also DEMAND a script for PT. Intra and extra oral facial massage should help with the trismus plus help somewhat with the dry mouth. Massage of the neck should reduce some of that hardness. See if they can recommend a therapist that specilaizes in Head and Neck problems. Keep stacking up those tongue depressors. You gotta get the mouth open to be able to eat.
Ask your doctor about this first, but another thing that might help is going for a facial. I had one about 4 months after radiation and the heat and moisture were wonderful, not to mention the massage. Also all that moisture is good for the trach. If nothing else, the relaxation alone is worth the money.
As to showering with a trach, mine is permanent so don't know if you temporary trach guys can wear any neck gear. Inhealth makes a shower guard that is good. email me if you want the details. Personally, most of the time I don't use it. If you have a shower that is large enough, stand with your back to it so that the water hits you below the shoulder blades. Cover your trach with your finger and turn and get the front of you wet or when you want to rinse. To wash my hair, I take a wash cloth and fold it triangular and roll it, then fold it in half and lay it in a circle just above the trach. Lean backwards and get the hair wet, put the cloth down, shampoo, and then reapply the cloth and rinse. This means you are shampooing with one hand and the other is holding the cloth. Tricky but it works. Hopefully that was 'clearer than mud'.
Now if I could only get up enough nerve to go in the ocean again.
Keep those drs on their toes.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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