| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I agree with Jen, you do look wonderful Nate! After everything you have been thru you have made excellent progress. Eric's olive oil idea is a very good one. Very high calories for only a tablespoon. Whole milk is fine for the tube. Just make sure you flush it good after milk or olive oil. Keep up the great work ChristineSCC 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 | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Nate:
You really sound upbeat for all you've been through. How wonderful! Christine and someone else mentioned your picture on Facebook, but I can't find it. I know we're "friends," but in case not, please re-friend me. I'm Julia Bouvier on Facebook. Keep up the good work - prayers headed your way now and from the first day you posted.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hi, Nate! I hope you are a bit more comfortable at home. This is the time that sucks...healing and waiting. Keep a regular schedule with your meds. Set an alarm and wake up to take them so you can stay on top of the pain. As you probably know, it's better to keep pain meds at constant level in your bloodstream than to let levels dip and have to climb back up.
As far as the swelling goes, use soft gel reusable ice packs. If you don't have one already, they are the best because you can mold it to your face/neck. You can get inexpensive ones at your local drugstore. It's a good idea to have a few on hand so that when one gets warm you can put another cold one on. Also, I'm not sure how much area you have to cover. I'm assuming your face and one side of your neck. Be sure to have a thin layer of material such as paper towel or slip it inside a pillow case. I used paper towel and wrapped the ice pack up like a birhtday gift, that way it lasted for a while and it stayed in place. Putting light pressure on top of the ice can make it more effective and feels great. You can hold the ice around your jaw and face by tying a pillowcase around the top of your head...you know, like in the cartoons when someone has a toothache?
I am a physical therapist and use ice with patients all the time. There are 4 stages/sensations you feel with ice (cold, sting, ache, numb)...once you're numb, you're done. Keep in mind that you are likely already numb in many areas, so you have to make sure note the amount of time you have it on. Check your skin...it will turn red/pink then blanch a bit and return to normal within 10 minutes of removing the ice.
There are a few rules about ice. *10-20 minutes every couple of hours; more than that, you're not letting blood flow back into the area
*Do not sleep with ice on...you can give yourself a serious ice burn!
*do not apply ice to graft/donor sites without your doctor's permission
*do not apply ice over medication patches, areas of poor circulation, open wounds, or infected areas
I purchased a recliner just before my surgery specifically for sleeping with my head elevated. I slept in that recliner for about 6 weeks after my surgery. If you don't have one or can't afford to purchase one, ask friends/relatives if they have one you could borrow for a while. Craigslist is also a possibility.
Also, when I was in the hospital, I had quite a bit of swelling and it was restricting my breating. The doctors ended up putting me on steroids and they did the trick. Of course, I am not a doctor and steroids have risks, but ask about them if you feel the swelling is really bad and certainly if it's affecting your ability to breathe.
I don't know you, but I have been thinking of you every day. I'm not on the forum daily because I find that I easily get depressed and anxious and end up focusing too much on cancer. I try to do it in moderation, but I have somewhat of a compulsive personality and can overdo things. Just know that if I'm not on here every day, I always check back to see how you're doing. I hope the tumour board and team come up with an effective treatment plan for you. You are also a part of that team, so keep exercising your input and self-advocacy.
I hope you can find some comfort both physically and emotionally. It will be nice to wake up each morning and not have cancer be the first thing that enters your mind.
Peace, my friend, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Awesome advice on the icepacks. Old school boxers use ziplock bags. Fill the bag with mostly cold water, add salt and icecubes but don't fill the bag very full maybe about 3/4. The salt melts the ice and lowers the freezing point making the water very cold. The ziplock is really moldable and will form around anything really if not filled up too much. Works great for broken noses and black eyes. Incidentally ice + salt+ water in a cooler is the fastest way to cool down beer. The notes from a Mythbusters episode here http://kwc.org/mythbusters/2005/03/mythbusters_cooling_a_sixpack.htmlTo kill two birds with one stone, keep a cooler with icy salt water and fill the ziplocks whenever you need while you're keeping your beer cold! Multitasking! Eric
Last edited by EricS; 10-01-2011 07:24 AM. Reason: always spelling
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | I've never heard that, Eric! That's a great one to pass along to my patients. I have a coworker that tells her patients some ratio of water/rubbing alcohol, but I always forget what it is. I'll have to find out. It makes a slushy consistency that doesn't freeze rock solid. It's great that we all can borrow from each other's bag of tricks . Thanks!
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 62 | Love the multi-tasking idea Eric! I will use that with my NA beer later this week!
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Hey my pleasure Kerri.
The alcohol to water ratio is 1 to 3, I've used that before actually got that from my PT when recovering from a massive injury that ended my wrestling career. The rubbing alcohol keeps the water from freezing fully to keep it moldable.
I used the ice/salt/water for my hands, face and knees mostly. Broken knuckles, noses and very sore knees. It's amazing the tricks fighters have for recovery. Bruising especially by getting the swelling down as quickly as possible and then switching to a very warm water to increase blood flow to the area to "flush out" the bruising. Worked wonders for black eyes.
Catherine, have one for me my dear!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | I know, Eric! Fighters and trainers have some amazing tricks that really work. As the saying goes, "Necessity is the mother of invention.". I am also amazed by the training techniques they use. That's why I used to like to watch "The Contender" when it was on. I was just amazed at what the human body can do above and beyond what the average person does.
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Watch The Ultimate Fighter Kerri! Its on spike TV Wednesdays at 8pm, time for my own ultimate fighter series, did you guys watch my friends episode on ESPN? Rad Martinez-The Promise, look it up if not. He has been motivating me in big ways, love you guys. Drop by and tell Rad high, he is an amazing and uplifting person. With all of you, and Eric with Rad sitting cage side I can't lose. CT Scan in morning, lets hope he bastard stayed put so they cn get the poorly differentiated bastard. When I'm through its going to be annihilated rather than differentiated. I am sooooooo pissed off right now, come on with it you f%*k! -Joe Pesci voice.
Your Friend, Nate
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Kick Arse and take names Nate!!
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
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