| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | For sure the tiredness will get more pronounced as time goes on. Your body just wants to sit and relax and then you fall asleep. This is something you can't hurry or wish away.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | losing the hair was tough on andy too. he said it made him "look sick", when before he just looked normal. it passed pretty quick as i would not let him dwell in self pity...i also reminded him that bald is in and he looked like everyone else  i went and bought him alot of caps and beanies. i basically threatened family and friends not to cry around him, if they felt the need to cry...leave the room. that seemed to work. the stares in public, i couldnt control. i just tried to focus him on other things. i couldnt go around threatening and smacking EVERYONE in public, although it did cross my mind  good luck on the next round. keep us posted.
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 | I wonder how many of us didn't lose any hair after being told we would?? I thnk mine got thicker. I lost some whiskers on the sides of my jaw but that is it.
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: Feb 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | Lisa, I don't know much about any of this specifically so I will leave that advice to the voices of experience here. But through my work,I have worked with people who have had to deal with reactions from friends, family, neighbors over difficult situations(death of a loved one, children with special needs, illnesses,etc). It is amazing what well meaning people can say or do. I think often people just get so nervous they get inappropriate. I think it's important to get comfortable nicely but firmly cutting off those reactions immediately. With every thing else you are dealing with, you don't need to process or internalize other people's difficulty with it. It might help to develop a few answers in your mind to put a stop to behaviors you find uncomfortable.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I shaved all of my hair off long before Tx (or Dx) so when they told me I would lose my hair we all had a good laugh. I didn't expect only 1/2 of my moustache to fall out (it grew back) and a few obstinate survivors near my thyroid. At least I don't have to shave my neck anymore.
People are idiots - they just don't know what to say. Some "friends" will vanish because they can't face their own mortality. You will make new ones that come out of the woodwork. Some will vanish forever, showing their true colors. I got so sick of people asking me "How ARE you?" (like when is your death impending so I can get a hallmark card) that I finally told them to "shut up" that I was sick and tired of being constantly reminded.
Any public places, markets, church, ATM touchpads, sick people, especially children are VERY dangerous when your immune system is collapsed. A common cold can turn into pneumonia in a heartbeat and kill you. Never let sick people in your home or vehicle. Carry waterless hand cleaner and wash your hands often. Meticulously disinfect your house, especially the kitchen and bathrooms and all doorknobs. If you have a temperature above 100.5 go to the ER immediately.
Last edited by Gary; 02-10-2010 05:40 AM.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Gary , this is a great post and so ,much truth in it. I had but one take off but maybe for a different reason. LOL I did have some that thought I would die but figured out that I am as tough as anyone ever was.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | this is definately the time that u find out who ur TRUE friends are.
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
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