In the this past week since my official diagnosis, I've been trying to prepare myself and anticipate the needs of my household and family, as I'm the primary caregiver. On one hand, I've pretty much been the one doing all the chores, errands and labor so my husband could concentrate on his career. (One of the many reasons I feel huge guilt in becoming so seriously ill is what impact it may have on his career)

As you folks have already gone through what I'm facing, did you ever become so incapacitated that you needed to hire in help, say getting a maid service for awhile, or need to arrange hospice care to allow your spouse to return to work?

I'll start a different subject on how to deal with relatives, but you know, relatives and friends have even offered to fly into my state to help me. I'd gladly accept, but on a different note, it makes me uncomfortable for people who love me and this includes friends to see me in this sort of shape.

My normal daily duties as caregiver and jack of all trades is doing like five loads of laundry, folding, ironing, putting it all away, whipping out dinner, shopping for groceries, making sure the various pets get fed and the tank, cages and bedding are clean. This is small stuff that probably my family doesn't even realize I do constantly.

Guess I want to know what to expect. I know I'll feel lousy after surgery. I'm just wondering if they are going to tell me to limit my activity even if I do feel like doing it. I've already cut out completely my seven to ten mile a week walking habit.

With radiation and chemotherapy brought up, I'm wondering that instead of dealing with my constant insomnia (I'm averaging only about 4 hours of sleep a night)if I'll be lethargic and sleeping all the time.

Did any of you feel the need to contact outside help? We've already told the kids that they will have to help out a bit more (and it's unfair to lay all the burden on them) but their first priorities are their schoolwork and outside activities like Martial Arts. We're trying to keep their schedules as normal as we possibly can, but if I'm doped up I don't know if I'll be able to power the minivan back and forth shuttling them around.

Thanks to all of you

Jen, your family will have to adjust to your treatments, just as you will. If hiring help will assist in keeping things together, then you should do that. By all means, take advantage of family and friends who offer to help. It is good for you and makes them feel like they are actually participating in the care of someone they love. Don't deny them that. And don't think too much about your appearance, if it was them having this treatment, would you care how they looked? Or would you be understanding and helpful?

As far as the treatments go, I didn't want to know any details as I felt I could deal with it as it came, but would have trouble anticipating what was to come if I knew it. If you want to know detail, your doctor will generally tell you all you want to know in as much detail as you request. They often won't mention things until asked to avoid giving more info that the patient really wants to know. Generally, I found that radiation was the worst, surgery was next, then constipation, then chemo, then the meds. Although, constipation was caused by the meds and I didn't treat is as soon as I should have, so maybe that and the meds were equal.

I would keep doing what you were doing, walking, eating, sleeping, whatever, until continuing to do so is to much of a burden. You'll know when to adjust your routine and try something else. As far as outside help, my saintly wife took care of everything, including all of the chores I had done that she could. Everything else just had to wait. Things like trimming the hedges, planting, car repairs, etc. Carole even did some of the home repairs such as replacing wall plugs that stopped working, etc. Roll with the punches a little bit and accept that the house may not be emmaculate, but you all need to concentrate on Jen's treatment and recovery, the other things will be taken care of later.

You can do this, Jen. It isn't a walk in the park, but a lot of folks have gone this path before you and come through it OK. Just concentrate on getting past the treatments and getting back to the new normal after you have beaten this disease into submission.

Jen,

It's hard to predict exactly how you will feel as your treatment progresses. I'm one of those here who continued to work, at least part-time, through radiation, but I didn't have children to look after at home, either. Most people here will probably agree that radiation was far more debilitating for an extended period of time than surgery -- and the effects of radiation tend to come on gradually over time, not all at once at the start.

That being said, I would recommend that you be prepared to accept help from friends and family who have offered. You may not find that you need it right away, but if there are people who can help with running errands, bringing in meals, driving you back and forth for treatments, etc., it can go a long way toward making this process a bit more bearable.

I understand your concerns about the ramifications on your husband's career. When I was diagnosed, both my husband and I were in positions that demanded a great deal of time and attention, but we quickly came to realize that our focus for the duration of treatment had to be on getting through surgery, radiation, and the after-effects. One of the values of this site is that it contains a tremendous amount of educational information about the seriousness of oral cancer and the extent of treatment that is required. It may be an eye-opener for your husband's colleagues to visit this site to get a better sense of what is reasonable for them to expect of him during this time.

Cathy

I guess right now on my priority list is enlisting my girlfriend to let me know when her next day off is so she can wait for a repairman to fix my washing machine and give them a check.

My priorities have really changed and I can't even book simple repair appointments without knowing for certain if I'll be at home or 60 miles away at the hospital.

Husband is already thinking about getting the back patio door replaced and a pet door installed for the dog. I complain that the dog literally harrasses me all day "in.. .out.. in out" whatever side of the door she's on, she wants to be on the other side. The door is a pain in the butt for me now because it takes some heft to jerk it open. It'll be worse if I have stitches and pain.

The things you have to prioritize right?

Everyone responds differently to treatment. Some here continued to work and others went back to work early. It is very hard to tell what your exact experience will be. Personally I was prety much totally disabled for about a year. and it took another 6 months after that to get back my strength, get over the depression and have sharp mental faculties again. The worst part was the 7 months following radiation. It got better daily from there. The turning point was about 3-4 weeks post radiation. Progress was measured in 3 week increments back then. Focus on getting through each day one day at a time.

Jen

Just for sanity's sake, many believe it is best to keep as much "normalcy" and routine in your life as possible. Never worry about reaching out to friends and family for help in any way. If you could afford hiring someone to help, go for it. You will find, though, that when you are facing the battle ahead of you, everyone around you is wanting to help you in any way they can. It is always easier to give that to receive and you will find that anyone you ask will respond. It is our human nature to want to help each other but most people will try to keep their distance because of not knowing what to do to help you.

Some things we did included asking people for gift certificates from Wendy's, Schlotzky's, Boston Market, Subway, etc., so the teenage boys could get something somewhat healthier than McDonald's and still make it to football games, church youth activities, etc.

There is nothing easy to this, but with the help of family and friends, it is more than tolerable.

Ed