#43209 04-28-2004 03:34 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 | Gary, you are so right about how tough the job must be for the radiation folks. I made it a point to go in with a big smile and be as pleasant as I could just to start their day off right. I was the first one every day around 7 am and it was a blast. I still make it a point to go and say hello on all my doctor visits so they can see how good I am doing. Yesterday even the radiation oncologist jogged down the hall to shake my hand and tell me how good I looked. I thanked him profusely for the treatment.
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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#43210 05-04-2004 02:22 AM | Joined: Feb 2004 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 43 | Good point Ed!! also think that you get better treatment when people are glad to see you and talk to each other about how great a patient you are. I try to leave a white trail wherever I go, whoever I meet in this trying situation. Thanks for the idea about the Flowers!!! Tom Roussell
SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.
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#43211 05-07-2004 03:22 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | I have less than 2 weeks left of radiation (before brachey) - YIPEE!! I'm taking that damn mask with me, cutting around the edges, hanging it on my dart board, and going to town daily.
I love my rads techs (especially Ana, who's been especially awesome). My only frustration has been the time I'm left in the mask. I agree they deal with many patients and have a thankless job, but ours is just as thankless. They don't understand that seconds matter in that mask - the freedom of getting out ASAP (and I DON'T use that term lightly) is so important (at least to me).
Regardless, I too smile, laugh and joke with them as much as possible - even I'd rather crawl under a bus than drive into Boston AGAIN. I've already brought them cookies, and plan to bring a GIANT batch my last day. If I could make them all afghans, I would, but my little fingers just don't move that fast. I agree they're JUST as integral to saving our lives as our doctors, our nurses, our friends and family, and even the radiation valet guys that make our trips just that much easier (note to self to bring cookies for valet guys, too.
Sabrina | | |
#43212 05-07-2004 04:03 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Sabrina,
You are incredible! Are you still driving yourself to your appointments? My mom had my sister take her the last two weeks because of the pain meds she was on. She hated that mask too and the way her face looked after they took it off everytime. My mom looks sooooo thin. We think she looks like she went to a concentration camp because she lost a lot of her muscle and now has a lot of loose skin. Good for you for working out. You are truly amazing...
Oh and as far as a roomate goes for my mom if you ever want to come out for a visit you are more than welcome.... We can show you around.
Dani :p
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#43213 05-07-2004 04:32 AM | 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 | Sabrina,
I can imagine you are counting down the footsteps with such a short time left! It amazed me how fast it went at first and how slow the last week was. I still have the mask somewhere and I probably have the little tattoo dot still there if I could remember where it was.
Be sure and bring some of those cookies to Las Vegas! I will even park your car for you, now that I know you are soft on the valets.
May you glide through the tail end gracefully.
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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#43214 05-07-2004 05:00 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Ed,
Tattoos?! Mine are still visible after 15 years!
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#43215 05-07-2004 05:40 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Yep, yep. I know what you mean, Sabrina. The time between when the last field is radiated and when the techs come and unsnap you from the table can seem endless. Or when they would come in and tell me they needed to do a "quick" xray before they would let me up. #@%&*! Anyway, you're almost done and the light can be seen at the end of the tunnel. Good deal.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#43216 05-07-2004 06:03 AM | 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 | Did y'all have to do the strap thing around the wrists and under the feet to pull your shoulders down, too? I remember the last few treatments and the thick goo in the throat, the pain and having to lay there hoping you wouldn't choke on it. Then there was the MRI and each time I gagged on the goo, the lady chastised me for moving and having to start all over. I really was feeling sorry for her, too. NOT!
Yep, those were the days, my friend, I thought they'd never end...those were the days, yes those were the days.
Kind of makes you want to sing a long, eh?
:p
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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#43217 05-07-2004 07:32 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Ed,
I used to be able to sing, but do mind if I just humm along, ha ha! I would sometimes just not tell the rad tech that the straps were too tight, because I couldn't speak very well, and my shoulders would be aching so badly by the time I was through.
My treatments lasted about 15-20 minutes, and I would pray through the treatment to keep my mind off the fact I might gag on the goo and spew through the mask the lovely formula I was taking through the PEG tube.
I heard this one guy after treatment was over, they asked him if he wanted the mask and he said, Hell yea, I want it! I'm going to run over it with my SUV. I wish I was that quick witted.
Good luck to all going through radiation! You can make it!
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#43218 05-17-2004 10:46 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Ok, I admit it. I TOTALLY flipped out in the mask last week, the day after I wrote that post. I honestly think that's why I haven't logged in since then - too embarassed. You keep saying to yourself "I can do this, I can do this, stay calm, stay calm, stay calm." So I come to you with my tail between my legs. Wasn't calm. Tears everywhere. Technicians didn't know what to do. I didn't know what to do. Except cry. Of course there were new people in the waiting room - just what they want to see come out. We're all allowed that one freak-out, right? I mean, the machine broke FOUR times on me, PLUS the XRAYS and they didn't come in to take off the mask until after the SECOND breakdown ("It'll take 3 minutes to reboot, Sabrina. Hang in there" - may as well tell me I'm becoming a permanent attacment to the machine people). And the new girl put it in extra tight, just for kicks and giggles. Jim comes to all radiation appointments, just in case of a mental breakdown. Didn't think I'd ever need him, but thank HEAVAN he was there!! But I drive back almost every day for the Support Group, the social worker, nutritionist, whatever ALONE. I still have to show I'm independant, right? No weaknesses here - can't risk losing the pants in the family.  J/K. Kinda. Three days and counting. WOOHOO!! Sabrina | | |
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