I'm not in treatment yet, but it's getting closer. I have been reading about the fatigue from treatment, and this is scaring me. I already suffer from chronic illness that saps my energy so much I had to retire early. I can barely get to doctor appointments now, even before therapy begins. So now I'm scared about what state I'll be in after therapy starts.

I don't have any friends near me to help me. So I've looked into hiring caregivers. But I'm not sure I can afford this for the whole treatment and recovery. My father offered to help, but he is 90 years old and has a heart problem and doesn't live close. I would feel just awful if the stress from helping me hurt him.

Anyway, I'm trying the best I can to find help. But I'm already exhausted and it's hard.

Andrew,
You really do need a caregiver. Perhaps you should consider calling the American Cancer Society in your local area and talk to someone about help...particularly later in treatment. I am sure they have helped people in the same situation as you and can suggest some resources.

Good luck and please don't try to tough this out by yourself...someone needs to watch over you particularly regarding nutrition and hydration.

Deb

Hi Andrew,

I know this is so difficult to deal with especially without a designated caregiver to lean on. Defintely contact the American Cancer Society for help. I have been exploring this as an option myself as a way to contribute and help others dealing with cancer.

What if you hired someone for just a few days a week to help you with errands and making meals to start out with and then take it form there? It may not be as expensive as you think.

You are in my thoughts. LOVE Kate

Hi Andrew,

Another option is to consult with the Social Work department at the hospital where you are being treated. They may be able to help you find some assistance and may have a list of volunteers who can help. Your doctor/team should be able to help you connect with the social workers if you aren't sure how to do this.

Also, if any of your friends or family ever says "just let me know what I can do to help" - they MEAN it! The problem is you are going to have to ask for specific help from them, but go ahead and do it. It will make them feel good to know that they can truly help out by driving you to appointments, making meals (if you are able to eat solid food), cleaning up your home, watching pets, whatever. Make a big list of all the things that would be helpful, and the next time someone asks "what can I do?" just hand them the list and ask them to pick something that would work for them.

Best of luck to you!

-Tricia

Thanks for the tips. I'll follow up on these.

Andrew - I know in our area in addition to all the great ideas above - several churches provide assistance. Even if you are not a member or an active attendee we have several churches here that provide money, meals, taxi service, house hold help, etc.

Don't be shy - ask EVERYBODY. There are tons of people in this world that really want to help people in a situation like you are dealing with. There's lots of crappy, cynical stuff going on in the world these days, but there are still good people out here!!

good luck to you

Bottom line is that the effects of the Tx are cumulative and will most likely take a huge tole on your body so please get assistance anyway you can.

All of the above -very good advice. I would add to it to try to plan for all of this ahead of time. Take out an equity line of credit on your home if you can. I gave my wife power of attorney so she could pay the bills. In addition to the well known fatigue side effects, the pain meds will cause your mind to be pretty well scrambled as well. You will need a caregiver - start lining up your neighbors, coworkers, friends, relatives, church groups. etc., now.

"There is nothing to fear but fear itself" - We've all been there - you can do this - one day at a time.

Andrew,

OK, this is bottom line. YOU will need some help!! I can not believe that you do not know someone that will be there for you.?

Right now you NEED Family, Friends, Neighbors that know you!! You will need big Support going through Treatment. You can also find support with Those that have gone through this. Check with the hospital for Volunteers!! Most of us that have gone thought this offer guidance for others.

Maybe someone here, may live close to you and can be of some help.

I am thinking of you... Hope this was of some help!!
Diane

Andrew, I can really relate to your situation. I took care of my husband for years due to his emphysema and he recently passed. Now I have been taking care of my Mother as she is legally blind, now I have been diagnosed with what appears to be cancer and don't have anyone to help me either. My mother is 81 and in better health than me. I am 55. I know that the hospital you go to will have very educated people in there to help you with every aspect of your aftercare. They will help you to get everything situated so don't worry and put all your energy into recovering. My thoughts are with you. Angel

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.

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

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

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

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

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.

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