#69446 02-07-2008 03:59 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This morning I feel worse than at anytime during this oc. My body and head are numb and I can't figure out what the problem is. If I didn't have to make the 64 mile round trip, I would go back to bed and just lay there until the numbness left. Even my chest feels strange. But I have to go get those rads and maybe there I can get someone to check me out. Now is the 1st time I could use a CG to take me. Has anyone else had these feelings?
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Jim,
I am so sorry and I knew this was coming. You need someone...anyone to help you. Who can you call..this is not the time to be tough. You do not need to be driving.
Wish I could be there...Florida is a bit of a drive. Now...go call someone!
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Jim,
At the very least, you need someone to drive you. God forbid, you have no one to help... you simply can't do all of this alone. Certainly there is somone you can even HIRE if you have to, but you've a good bit to go yet. Think about it, Jim, and be smart. God bless... if I could be there I'd help you out. Wishing you the very best.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Jim,
Do you have 'Patient Transport' like we do here?
Not ideal as they decide when to pick you up and you could be waiting for hours whilst the return patients are all ready--but you could snooze or chat to others waiting during that time.
It's a free service here and is door to door, but doubt it will be the same in every case.
I'm sure I suggested before you embarked on this 'next round', that your Pastor/Church could organise a rota for at least some of the time--that's always supposing one stubborn old guy I know, called Jim, actually LET THEM KNOW it was needed!
It's going to get a whole lot worse before it gets better, as you well know---get the family on board NOW as well, you know they're all willing and able, you've said so.
Look at it this way--it seems like forever as the patient, for them, although it may well seem like that (before all you lovely CG's beat me up!), it's only a matter of weeks/months--pretty short time which may feel like Hell on Earth--in the grander scale of things.
C'mon Jim, my heart aches for you, but you gotta do this over this weekend!!
Love Bren x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Jim,
We would hate to see a headline "Elderly man arrested for DWI, alcohol level O, drugs and fatigue blamed."
A new facility has opened here where out of town cancer patients and their families can stay while they are in treatment. This one is run by the American Cancer Society. When you go for treatment ASK to speak with a medical social worker or patient omsbudman. They should be able to help you find an alternative to driving yourself back and forth and perhaps a place to stay and rest for a few hours after treatment if you must drive back.
Last edited by Malka; 02-07-2008 07:23 AM.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks for caring all you great friends. I waited until it let up a little and then left. I made it there and back . They checked to see if I was dehyrated took my blood pressure, I checked out like a 20 yr ols. They did tell me to get some gator aid to drink besides thw water, so I stopped at Sam's club and bought some. Dr also ordered another MRI of my throat for the 12th. I must have an appt everyday next week for something. I just have to be looking like the moon when it gets dark. LOL
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 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | You need some rest. The American Cancer Society can give you some names of volunteers who do this and really want to do it!
You need to take care of yourself!!
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Jim,
Did you ask for help as far as transportation is concerned. Remember, I told you that the American Cancer Society will transport you to your appts...please call them because, if not today, one day it will not "let up."
Bren, there isn't a formal transportation to clinic included in our medical system, but the ACS does a lot to help with all aspects of cancer care and treatment. Bill and I could have stayed at the Hope Lodge at Moffitt Cancer Center in a lovely suite had we chosen to stay on campus. No background check, no income verification and no cost...just if available and you have to have a caregiver stay with you. I guess the theory is that if you stay there and have money, that you will donate in the future.
Jim, you can not afford to miss your treatments....please get something in place to help you when you can not do it yourself!
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | Jim:
Im sorry you arent feeling well.
Call the American Cancer Society. I got a driver 3 times. All the drivers are either former cancer patients or caregivers. After about the third day of my treatments, I was unable to drive myself anymore. I had about the same miles as you round trip to the hospital. The cancer society may not get a driver for everyday, but even for a few times, its helpful. They also will help with up to $300 reimbursement for medicine or mileage.
Another idea is to check with your church for help. You would be surprised at how much people want to help but dont know how. Dont be proud, its ok to ask for help. Thats something I learned from cancer.
Hope you feel better soon, hang in there.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | THe American Cancer Dociety doesn't have a local office in this area. I waited this morning until I felt a little better and made it there and back. Thanks for the wisdom all and if I need help, I am going to ask for 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
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