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I need help.

Paul L.
Posts: 2
Joined: Mar 2010

I have squamous cell carcinoma, and begin my chemo and radiation on Monday. I've been trying for a few weeks to find someone whom I know, as I have no family, whom might be between jobs in this rotten economy, or a youngster who could use what I can afford to drive me back and forth to Mem Sloan K in Basking Ridge, but haven't had any luck. I don't need to ask about how debilitating my next couple of months are going to be, although I would like to think I won't need any help. I must plan on needing help, or jeopardize the process. Any of you KNOW of survivors or ANY social services type resource to look for help? TNX. Paul

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Paul,

Sorry to hear that you are just starting your fight with this horrible disease but please know that you are not alone. Everyone on this board is here to help you in any way we can, advice, encouragement or just a shoulder to lean on.

Have you contacted your local branch of the American Cancer Society?? They may be able to help you with transportation or be able to guide you in the right direction. The Lutheran Service organization may also be able to help you or check with Sloan K as they may know of an organization in your area that will assist you. Please don't hesitate to ask anyone for help, that is what these organizations are there for.

Please stay strong and post again to let us know how you are doing.

My best to you,
Glenna

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Call your local chapter of the American Cancer Sociey. They have volunteers that can help. Also ask your hospital if they provide shuttle service or know of transportation assistance.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Support for people with oral and head and neck cancer. A great organization with local chapters across the United States. I think the first retired person you find in your local group would probably enjoy helping out and what a resource that person would be. I'm not sure where the nearest is but i'll give you their 1-800-377-0928. They have a New Jersey -Long branch- 732-923-6473. New Jersey Morristown 973-971-4144, new Jersey phily 215-662-6193, New Jersey Toms river 732-557-8270, and all of the other suggestions are great sources also.

You have my admiration for going through this alone. Please become a regular here and we can and will be your support, Lean on us, These are some terrific folks here.

friend of Bill
Posts: 87
Joined: Mar 2010

ACS best bet but if they can't help, call local college/university Social Work Department which often have clubs/service organizations/faculty looking for ways for students to help, or contact the Ministry Center of a religiously based college. Be prepared they may have concerns about liability, but they may also have further resources. May you be given strength ahead.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The previous responses make some great suggestions. The ACS is particularly useful because they should also know the names of local organizations established in memory of folks who have had cancer in the past. The mom of a kid I coached in soccer was the president of a group that offered transportation and company to people, for example, and I didn't know it until after the fact: they are registered with ACS.

At the risk of repeating what others have said, here is a small list I have haphazardly collected over the last few years with help from others (it is geared toward financial aid, but transportation and other support may apply as well):

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

As has been suggested, please consider this discussion board (and the Chat Room, if you are so inclined) as support as well.

Best wishes for successful treatment and complete recovery!

Take care,

Joe

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hello Paul, welcome to the board. I just finished my rads (35) yesterday, and also completed my chemo treatments. I posted about the same post as yours when my treatment was about to start.

I too went through the process alone, excepting one check in and out of the hospital for a quick stay at the beginning of my last week of rads. I had the two treatments concurrently, as it sounds like you will. First, I drove myself to and from chemos and radiation on every occasion. I guess here is where I need to say, everyone is different, but if things go half way smooth, you too should be able to handle your appointments. I had only three chemos, had them earlier in the day, then went to rads later in the same day. I had to make up a few days from my rough week at the end, but was rested from the week off, and made the makeup drives and appointments no problem.

As a self supporter I would advise you to get everything arranged as much as possible ahead of time. I made sure I had a peg (feeding tube)--will need a ride there, so see information, I include--made connections with Apria health care for delivery of food, gravity bags, etc. Make sure you get several roles of "paper" and "cloth" type adhesive tape and gauze bandages to change your peg dressing daily. Also get your contact numbers together: Apria rep, rad oncologist, medical oncologist, nursing desk at your rad clinic in case you need to miss a day, everything you can think of just to make it easier. Get all your numbers and materials in a central location. It's no fun looking for gauze when you don't feel well.

After that, for transportation call 1-866-444-7272. If you need a different number for your area, they will get it for you there. You will want to speak to Gladys Puence (email gladys.puence_lara@cancer.org)

Gladys told me I would need to call her by Wednesday of each week for rides for the rest of the week or earlier the next week. The rides are offered by volunteers, but a gas allowance is requested for the volunteers and she will have to let you know how much that is. These numbers and names are about 7 weeks old, so should be good. If not, they will give you newer ones, but a program sponsored by ACS does exist. Too, check them on the peg tube placement, because they will want someone to drop you off and pick you up even though it is nearly always an outpatient procedure. Insist on the peg tube. If you're alone at home, you're not going to want to try and rustle up and prepare food you don't feel like eating.

I know your concers exactly Paul. Take these measures and any others you can think of ahead of time, and things will work out fine. Like you, I didn't have a "home" situation, and I know there are many advantages to having that, but put a few "emergency" protocols in place like the ones I've suggested and you'll be finished in due time. It's just a matter of getting it all moving. My brother had offered to come out from Florida and stay with me, but frankly, given I found I could make it to the treatment and appointments, I was often glad I was alone and could move around my apartment not inconveniencing anyone with a set of treatment symptoms they couldn't do anything about--it gets a bit messy sometimes. Keep a plastic, just-in-case pot by your couch and in your car, and a roll of paper towels. Email me on here if I can be of any help at all, or if you just need someone to talk with.

Hal

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