I live with my husband who has a mind of a 4 year old and don't understand most things that you are talking to him about, So I'm going to be on my own, I'm going to have to take care of myself. I can get someone to come out twice a week and get a ride to treatments, I'm scared to dead, I been fighting to get a pet scan set up, that the cancer doctor wanted before my next appointment (sept 2nd.) they only do them on Sat. the 23rd just passed and the 30th. is the labor day weekend. I have called more then once and they told me I had to wait till closer to my appointment...now what, cancer doctor only comes in once a week. If I cannot even get an appointment set up how in the world an I going to do this. How an I going to take care of husband meds and make sure he eats and take care of a peg, when I'm sick and week from radiation and chemo? can this be done, with little help, if someone don't cook for husband, he will live on candy and jelly sandwhiches. he hides food or gives it to the dog. my house is a mess and I just want to go climb in bed and forget about it. I sleep about 4 hours a night and its getting me down. sorry just needed to vent.

Hi Ruby,

Now is the time for family and close friendships. Have you called the American Cancer Society or any other organization? There are a lot of caring people out there that volunteer. What about a congregation? Do you belong to any groups? Have you asked your Doctor? I would call the ACS.

Do NOT ignore this...it will not go away on it's own. Why does your husband have a mind of a four year old? Do not let yourself get depressed...if you have to medicate then see the Doctor and get the proper medication to help.

Are you in a small town? What about insurance? What kind of facility are you going to? Are you far from family and friends? How many Doctors have you seen? Second opinions? Third opinions? Can the Doctor schedule the PET? Sounds like you need a team leader. Mine was my ENT. And if your husband is truly 4 years old...He'll be just fine on jelly sandwiches for a couple of months...Even if it takes all year to get better...let him slap those PJ's together...he'll be fine...Let's worry about getting you back to health first.

We can beat this thing...I'll be starting my rads in September too!

Raymond

my husband is 79 and for the last 7 years he has been forgetting things, he is now to the point where he can't understand what you are saying to him ( you say one thing, He hears another) he can take care of him self with a little reminder. he can ask what day it is 5 or 6 times a day. it's hard to explain, hes a very loving and careing person, but he might go to his room and forget, I'm even in the house. I'm going to a cancer center but the doctors are only there 1 or 2 times a week, we live in small town and they come from 48 miles away. no second opinion, no where to get one, ent don't think I need to do anything, because it was stage one and she thinks she got it, but there is a gray area becuse she had to take it off bone and couldn't get a clear margin. my family all works full time jobs and have family, they will help when they get time. My husband hasn't been able to belong to a group so we have just sat at home for the last 10 years or so. He can't stay in one place for long he gets bored and wants to leave and If I don't, he make a lot of noise, hollowing if I don't take him home right now he will walk. He has gotten lost many times and I have to watch him when Im out. thank you for your replys. I will call around and see who and what is out there, like I said we live in a small town and from what I'm getting I won't be able to drive after the first 2 or 3 weeks.

I would call everybody...volunteers are out there....and you need them....

Hi Ruby,

Is it possible for family and friends to volunteer to drive you to radiation treatments one day a week each? I had a different driver each of the days so it only took one day a week out of their schedules.

Ruby,

I am sorry about your dilemma but I don't see how you can try to handle him and you during your treatment. Ask your cancer center if they know of any volunteer organization. What about church? Maybe call the American Cancer Society? Lets hope someone else has been down your road and can offer a solution. One things for sure...don't forgo your treatment if you can't find someone to care for your husband or it's a good chance you won't be able to take care of him forever.

Ruby:

Im so sorry about your situation. I have a few solutions that may help you. I speak from experience, I basically was my own caregiver. My teenage son took me to treatments and that was pretty much the extent of any help I got. If I had to do it again, I would have somehow gotten someone to care for me on a daily basis.

First, the main thing here is your health. What type of place are you being treated at? You mentioned your ent couldnt get clear margins but doesnt think you need any further treatment. That should send up a red flag right away. You really should be looking into getting another opinion even if you are in a small town. The best place for treatments are large facilities that are Cancer Centers. They have the most experience and resources. There are counselors there who will help you with everything, even a visiting nurse or home health aid.

You also mentioned that there was family but they are busy. Have you talked with them? Do they know your condition? Do they know about your husband? Now isnt the time to be proud, ask them for help. Im sure they wouldnt mind helping you, but if they dont know how severe the situation is then they cant help.

My solution to this problem is to move in with a family member who would be able to help you and your husband. Your husband would adapt to the situation. You would have help with him and someone to help you. It could be a temporary thing, but think about it. Dont be afraid to tell your family members the whole story and that you need help.

Please call the American Cancer Society. I had a driver a few times and I live about 40 miles from the hospital I had been treated at. They can also help with medication costs and even a wig if you need one.

Its not just getting to treatments, its also counting your nutrition and fluid intake, taking medications, getting proper rest, picking up prescriptions and keeping appointments straight. You will need lots of help, maybe more than someone else because your husband also needs care.

Please keep posting here so the many caring members of OCF can try to assist you.

Ruby:

You can also try churches, lions clubs, or any other community based groups for some help. Dont be afraid to ask for help, thats what alot of the groups do.

Ruby,
You certainly could use some help. My father developed Alzheimer�s a few years before he died, and my mother had health problems of her own. Their family doctor intervened and got them help -- meals on wheels, home health care (nurses, p/t, and aids), transportation, and he also recommended my father enter a nursing home a few times when it got too hard to care for him at home. In PA, there is a Bureau of Aging that provides help, perhaps there is a similar organization in your state? Perhaps a family member could make some phone calls for you. You need to focus on your health right now. I wish you the best!

Well I called the cancer center yesterday and asked about the pet scan, I was told they would call me back right away, this was about the 4th. time I called in last few weeks. they didn't call so I went down there this morning and told them I wanted an appointment, the lady came out after a few mins. with a day and a time. when I got home it was on the answering mech. They had put it on there, before I even got down there so If I had only waited a little longer, I'm just getting tired of waiting. They are going to do it on Sat. I didn't think anyone would work on the labor day weekend. Now I feel bad. after reading everything
I could on here and your replys, I called the doctor office and told them I wanted radiation, so they have set up appointmemts. already have a mask. went by the acs, she was very nice and gave me a name and number of a social service person, said they would be more help. She told me that her sister didn't need anybody to drive her, that she took care of herself. I asked her what kind of cancer and she said colon. she don't think radiatio/chemo is that bad....would be nice if she was right, but I rather listen to someone who's been there. I'm prepairing for everything if its not that bad, great, if it is then I'll be ready. Thank youall, you have been a big help.

She doesn't think radiation and chemo is that bad because she never went through it....

radiation from the neck up is tough...others can tell you more...my treatments start the 16th

Ruby:

Although the saying 'everybody is different' is true when it comes to reactions and responses to treatments. Its very irresponsible for someone who represents the american cancer society to even suggest its not that bad and you could care for yourself. Obviously she has never experienced oral cancer first hand and knows nothing about it. Please be smart and dont listen to someone with no experience with oral cancer. You may want to call the american cancer society and speak to a different person. They have a network set up with volunteers who drive patients for treatment. You should have been given the info instead of her own opinion and a wrong one at that.

You will need help. There are doctor appointments, daily radiation to get to, groceries, prescriptions, laundry, monitoring calories nutrition and water intake, even just the most basic household chores and bathing. On top of that you have a husband who needs a great deal of help and supervision.

Have you talked in detail to all your friends and relatives yet? Have you considered ataying with someone while you go thru treatments? What about going to the larger facility for treatments? Any thoughts on getting another opinion? There are so many inconsistancies with your doctor that you need to be on top of things. It sounds like you are getting the run around for scheduling a simple pet scan. That is something your doctors office should be doing for you.

Hoping things will get easier for you soon.

I just found out lately that Senior Citizen Centers will drive you to appointments . Give them a try too. Our local one does.

Just wanted to thank all of you. We couldn't move in with anyone. we have 3 dogs 1 cat, 11 chickens and two ponds full of fish. We live in California so we have to water everyday and feed. My husband can take care of all that with the help of a grandson, The drug store is going to deliever all of our drugs free, (which we spent enought there over the last 30 years) between us we take 23 drugs and I most likey will be adding new ones. Daughter is going to pay our bills on line I have it set up, grand daughter said all we had to do is call, but said she would be here everyday to see what we need, She can't do that she has 2 small kids one in school, but she will be here a lot and plans on doing our shopping. I'm going to go to senior center next week and see if they can help with rides when needed. Im also going to talk to the social worker at cancer center to make sure I know how an get help when I need it with peg and other problems that will come up. I get the pet scan on Sat. go to the cancer doctor on Tue. and radiation doc. on Wen. I was hopping to start on the 8th. but I don't see a doctor about the peg till the 12th. can the peg be put in after the radiation starts? looks like its going to happen, funny I can't wait The sooner it starts the sooner it ends and I won't have to set around worrying about it. Im funny that way if I gotta do it then lets get started. I hate the waiting, I have my mind set, its going to be bad, but I'm going to do it if it kills me as the old saying goes.

Ruby, Im so happy to hear you have rounded up the troops to help you. I was very concerned about your situation. Its better to have too much help and not need it than try to find help and dont have any. Dont forget to call back the american cancer society (dont talk to the colon cancer woman) ask for rides and if you need help with prescription costs. Some meds are very expensive.

Ask the social worker for a home health aid or preferably a visiting nurse. Insurance covers this. With having a peg tube, most hospitals will send a visiting nurse to check on your peg tube to make sure no infections and that you are getting proper nutrition.

Hope your pet scan comes out with good results. Let your granddaughter come daily, you may need her or she may be able to help your husband. Right now you need to line up all the help you can get.

thank you christine, I really hated to ask because it will be for so long. when I had my surgery, my grand daughter came home from the hospital with me. left the kids with her husband and wanted to stay all night, but I told her no so she came back every morning for a week and call a couple times a day. If I need her she will get a setter and come, just hate to take her away from her family, her husband has to cook for himself when she's not at home, he's sweet, but shouldn't have to come home and cook after an 12 hour day at work. she's the only one that don't work full time, the rest can help here and there. I think I'll wait on the cancer center till last, funny that lady made me cry and I don't know why, maybe because I didn't believe her, it was the first time that I cried in front of someone, I do my crying when I'm alone. I'm a odd ball. hope every thing is going alright for you, I haven't had much time to read the broad.
Have a good night.
Ruby

Ruby-If your grandaughter wants to help-let her. It's a good example for her young children to see people helping one another. As a young child my mom would take my sisters and I all over the place to help older people who needed a hand. We would even go to nursing homes just to visit people she had befriended.

Sue

Ruby,

Regarding the PEG surgery after the start of treatment. If you decide to do that, opt for the surgery on a Friday so that you have the weekend to recover. You will be sore for a couple of days and won't feel like moving around a lot. Also, make sure that, if possible, you have a home health aide/nurse show you how to use the PEG and what supplies are needed. Do you have insurance?? If so, it should (as Christine said) pay for the feeding supplement and supplies...a lot of companies are out there that will supply all of this, bill your insurance, and deliver it to your home.

Good luck with all of this...I know it feels like a mountain to climb. Once you start treatment, a lot of the stress will end and you will have to put your resources toward eating, drinking and healing.

Hugs, Deb

Ruby,

If your Granddaughter offered to help...I would let her do so. You will need assistance. You wouldn't be taking advantage of anyone...it's what family is for...Remember, if she didn't want to do it...she wouldn't have offered. She offered because she wants too.

Does your Hospital have a taxi/shuttle bus available for patients undergoing treatments? I would call and find out.


good luck