| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Shannon
sorry you had to join our little club, but welcome. I concur with all the advice given you. Even if your husband is too stubborn to join OCF or log on, you can and should use this to vent all your worries and frustrations as a caregiver because this site has the world's BEST caregivers along with the feistiest patients. Actually my personal opinion is that the reason so many of our posters are female caregivers rather than the male patients is twofold: First the classic male desire to "do it on my own" (shown in the aversion to "asking directions ") Second, if he logs on here whining and moaning about how "no one can imagine the fatigue", he would shortly find out that his troubles are anything but unique. In fact, he would find out that many people had it worse without feeling so sorry for himself. We are sympathetic but posting regularly on OCF is the only known cure for "self-pity" parties. The good news is there is reason for HOPE. We all did it, and you guys can too Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | welcome shannon.
i cannot get my hubby on this site either. although i know how great it would be for him.
i relay all the info i see here to him, so its all good. plus this gives me a chance to rage and vent and "cry" without him seeing it. i can post my worries and concerns here knowing he will not see them. and what follows is great advice and alot of support. caregivers need this site as well as patients.
this site will help u keep informed. that is key to caregiving.
come back often, and keep us posted on his treatment.
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | UncleVern must be a tough old dude. Get your hubby to read his post above.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 97 | Moving at his-own pace, and weighing in at 188 pounds. 'THEWPAH NERD' blows by like a blinding... wisp of gas. Fully charged with NERDIA-LITE coffee, the days' goal is to bottle 5 cubic feet more of the coffee based artificial enthusiasm...
More stubborn than tough is more like it... My RO was pushing HARD for me to keep the metabolism as high as was possible. Some of the stunts were a bit stupid, like getting stranded in the cascades sinking my van in the mud and ice the day after having the port put in my chest. He was thrilled at the idea that I had to pack gear up to the shelter to survive the night, others quite appalled.
The coffee based nutrient drink, special blend of high density liquid food, cream of wheat, eggs and MORPHINE was the trick. Now let�s get realistic about this� The morphine WILL slam the brakes on the metabolism and there was a price to pay in the form of a stalled digestive tract once the patches were not enough and I started in on them �little blue pills�.
Knowing what was to come, I shoved my weight up to near 230 pounds before TX, ended that adventure a little above 150 pounds and spent the week after the final TX floating in the tub and wondering if I had actually made it.
Everyone has a different experience, different environment and different ways of dealing with the challenges. Mine was to slap it in the face with humor and refusing to recognize some stupid cell�s right to change my life, maybe just delay it a bit.
The stunts and chaos that I caused in the clinics, hospitals and area stores got me the attention of security, law enforcement and more than one staff psychologist. All these, a desperate effort to find the humor, keep my attitude positive and educate insensitive and over sensitive people.
Please have a look at the other stuff that I wrote here and print anything for him that you think will trigger a smile, laugh or an energizing stunt at the local �Wally�. There is nothing more gratifying to me than making someone�s day a little brighter.
VC
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Uncle Vern.. you sound a lot like this old guy. I never listened to the Drs either and tossed the morphine plus a few more. Sure My mouth still feels like the team with the steel spikes playing a game of soccer or football in it. But the rest of me feels like about 17 or 18. I take muscle milk an hour bnefore I work out and it seems to help a lot. Wish it would add some of my 220 lbs back too. I cleaned a couple of inches of snow out of my driveway this morning and then put ice maekter on it. Cleaned my daughters car off I am selling for her and then cleaned the garage and washed clothes. LOL Mabe I am just hyper. Tell your hubby to read Vern'st and maybe even mine. We want to live and act like we do. There are way more than us on here like Charm, Christine and alot more. We are all toughies here and tell him to join us.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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