You can write... Its all about adapting and making do at this point - did I suggest a water pik to you? If not try to get one... put some luke warm water in it and a bit of mouthwash (preferably ALL NATURAL - and definitely alcohol free) a capful, and on the lowest setting possible use it to clean out your mouth. It really helped me with the saliva and helped me feel fresher... plus keeping your mouth clean helps stave off infection, and heal. (they have different heads... one for along your gums and one you can use to clean your tongue and all those little areas inside your mouth. Mine was invaluable and I still use it. I also used to carry around a rag to spit into. I used to walk my dog and spit on the way... anything to get it out. Buy club soda, flatten it and drink it... it cuts up the saliva and helps hydrate you - plus it helps you heal (the sodium bicarb in it is a healer)

I understand your frustration and that you feel down because you can't talk right now.. but the you're alive card is a valid one. You haven't met Nate - he's a musician- and a great guy and 25 years old. He's had two recurrences - numerous surgeries - and he was told just two days ago, that there's nothing more they can do for him. His family is devastated, as I am sure he is. It's heart breaking. Last year - a 22 year old woman - Samantha, with an 18 month old daughter faced 3 recurrences in 2 years. She went into a hospice, 6 mos ago and died shortly thereafter. Then there was MTLisa who was also in her twenties had to have a FULL GLOSSECTOMY (in other words no tongue, longer recovery period, and a speech impediment for the rest of her life) and she just passed away a few months ago. Even with all you are going through I would bet that any of them would rather be in your shoes now as opposed to facing no future at all. What you're experiencing now is temporary. It will improve. It may never again be 100% but it will get better - 80%? 90%? Sometimes people up to 3 years out note improvements. Usually it takes one month for every week of radiation... so that puts you at 7 mos to feel a lot more like yourself so you have to have patience.

At this point you are suffering - we've ALL been there... the thick saliva - the pain- difficulty eating, sleeping, talking, trismus, swallowing issues, dental problems, disinegrating jaws (yes... if you don't take care of your oral health, and do some kind of therapy to help return circulation to the radiated areas - you can suffer from osteonecrosis, jaw replacement etc. and fibrosis) the drooling when you speak... ALL OF IT. Nausea, gagging, hair loss - on and on.. my advice is read up here on the fallout of radiation... there is a lot of information. Educate yourself on what you can do to NOW minimize the future damage that can be caused by it... that may include acupuncture, lymphatic massage (which you can learn to do yourself) Physiotherapy, and maybe adjust your diet to help you heal faster (high protein etc..) focus on getting better. Getting back to your old life is your ultimate goal, but it's going to take time. And never say the "you're alive" card isn't enough because you might just get what you ask for.

I know that all seems rather harsh but I'm just trying to get you to see that despite everything, you are lucky. You have a chance to heal and walk away from all this at some point. what you've been through is traumatic, and it will take time to get better. Instead of dwelling on the things you can't do, try focusing on doing the things you can. As for a support group... it's not all about talking.. it's about just beig there and to know that others have been there and come out the other side. take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan