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Joined: Jun 2007
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Hospitals have Social Workers to aid and give advice,, take advantage of them and let them help you. Most are very nice and caring people.


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
EzJim #74813 05-24-2008 05:59 AM
Joined: Feb 2005
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Just wanted to agree with what everyone is saying. For sure you should talk to the hosptial social worker since she or he may know of many other resources available for you in the community and be able to put them in touch with you. A good social worker can make some calls for you too--so you don't have to do all of that when you have so much overwhelming stuff already going on.

But also I wanted to especially encourage you to consider calling area churches and synagogues even if you are NOT a member. I know my church has a care committee that would try to help anyone in need and they would not even try to convert you in the process!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Nelie #74814 05-24-2008 06:04 AM
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One more thing I'd suggest is if there is any way you can afford it, to hire a cleaning person to come and clean your home before, during and after treatment. You will be having chemo which lowers your resitance to infection and it helps to stay healthy to have a super-clean home--especially the kitchen and bathroom and you will NOT feel like keeping up with it yourself during treatment.

I actually had a couple of friends that came to clean my home a couple of times during the worst of my treatment but, to be honest, I couldn't really deal with that well psychologically (may be because when you grow up female you feel you are somehow a failure if a friend has to come to help you clean). Later we hired a cleaning person who makes good money for herself doing this professionally and she did a great job. I wish we had hired her earlier.

Nelie

Last edited by Nelie; 05-24-2008 06:05 AM. Reason: typos

SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Jul 2007
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Andrew...I'm so sorry you have to go through this. I had BOT also. It was a shock as I've always been somewhat of a health nut and never smoked. My husband and I had just moved to a new area and had no family or new friends to help out. I felt so alone, just as you probably do. If your treatment center is close, they might have volunteers that drive patients. We're not religious, but I did find out that many of the churches have volunteers that are eager to help folks out. Try the local Red Cross, YMCA or a local senior center. Lots of retired people do many different kinds of volunteer work. Hope this gives you some ideas. DON'T be afraid to ask for help! You will have fatigue. That will be especially difficult for you. Just know that this will pass eventually. I was very active before this started and it was a real downer. I found it really helped to just go with it and baby myself. Hard to do for a very independant lady! Hopefully you have a significant other of some kind to help prop you up. My husband has been a rock. I could not have done this without him and it has made us even closer. Write and let me know if you've found help. May angels watch over you. Katie

Joined: Aug 2008
Posts: 48
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Joined: Aug 2008
Posts: 48
Oh angels I wish you were right, I'm ready to scream, all I get is a brick wall. Things went wrong getting peg in, Surgeron went on two week vacation and didn't take care of peg till he got back. just took bandage off and said it looked good. been 3 weeks and no training on how to us or take care of it. said a nurse would come out, well they did, looked at it and said they couldn't help me because I can drive. sign up for someone to come out and they wrote a leter of denile because I don't need to go to a rest home. the lady at the hospital come in and talked so fast, she was going to do wonders, haven't seen her seen. I have had 4 chemo treamenmts and today is #18 on radiation. I got sores in my mouth this past week, so they want to stop radiation, why can't they be treated whats the peg for? I can still eat and drink anything I want, it just don't taste good. I have lost no weight. I'm so tired of fighting with them. I also have to take care of husband, if it wasn't for a grand daugther whos been helping I would go crazy. Hope you have better help them me


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
rubyann #81459 10-02-2008 09:18 PM
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Ruby:

Sorry you are going thru such a difficult time. Ive been thinking about you and wondering how you were making out. Oral cancer's treatment can be pretty rough. Keep asking for help, dont let your request go unanswered. If you dont speak up, nobody will know what you are going thru. You must be your own advocate.

The peg tube needs some training to be able to use it effectively. You are flushing it everyday, right? Keep it clean and dry so you dont get an infection. Do you have prescription formula yet?

Its next to impossible to do this without any help, let alone to care for someone else. Please keep posting and ask questions, we can help you even if it is over the computer. Also, try to start your own post so people will answer your questions and give you their full attention.

Best of luck with everything that you have going on.


Christine
SCC 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 smile
Joined: Aug 2008
Posts: 531
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Hi Andrew...I can also relate to being scared although I didn't have the treatment you will be having. All I can say is the people at the hospital were really helpful and the social services worker she was the best before I left the hospital (and I was released early by 4 days) they had all my homecare arranged. I do know that there is help available and that you can do this...I was extremely scared too and the people here on the site helped me through all my anxieties and worries. They gave me a lot of sound advice and information. Keep going and day by day it will work out...

Dianne


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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