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#79327 08-25-2008 08:58 AM
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rubyann Offline OP
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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.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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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


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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rubyann Offline OP
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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.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
Joined: Aug 2008
Posts: 716
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I would call everybody...volunteers are out there....and you need them....


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Joined: Sep 2007
Posts: 98
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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.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
Joined: Sep 2006
Posts: 8,311
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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.


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
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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.


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: Jan 2006
Posts: 756
Likes: 1
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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!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Aug 2008
Posts: 48
rubyann Offline OP
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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.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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