Hi michelle,

i messaged Margret this evening and asked her to get in touch with you.I am sure you will here from her soon.

love liz

Hi Michelle- My husband was diagnosed with stage 1V cancer to the floor of his mouth. Scary number. We were completely in shock although I think he knew that he was really ill. I have children also but they are teenagers. I'm amazed at all the info you gathered prior to your doctor's visits. Way to go. Hang in there- this is a great place to come to for support!

Michelle,

I think you will be great as a CG. It's obviously not something to look forward to but you will do fine.

As a former patient from hell I will tell you that there will be times when he will lash out at you because he's afraid, depressed, hurt, the whole nine yards but try to let that bounce off because it's really not directed towards you or anyone for that matter. I yelled at my wife plenty and I even wrote her a letter post Tx telling her how sorry I was and then I made some STUPID promises and now she pulls that damn letter out occasionally to remind me. UGH

Try not to get upset around him because he just doesn't need to carry anyone else's burdens during the heat of battle. My wife told me months after my Tx was over that she would get in the car and cry just so I wouldn't see or hear it. That would have made me feel much worse at the time to know I was putting her through that.

Try to learn the difference between soft love and tough love and use them when needed. Tough love may be needed when he just plain refuses to eat or drink and becomes too weak to care. The one most important thing you can do for him is to make sure he drinks at least 48 ozs of water and gets 2000 cals each and every day. Of course there are about 50 other "most important things" you must do but I'll save some for the expert CG ers.

Have you tried to get him to post?

It is so heart warming to come home and read these posts. I guess you all have felt that way before.
Liz - thanks for asking Margeret to contact me. I looked for her blog regarding CG + mommy and couldn't find it. I found posts by her and enjoyed those, but didn't find that part. Of course I didn't read them all. It's so sweet of you to "watch out" for me and to recognize that need I have.
David - you are such an inspirational guy. Thank you for the advice - I will take it to heart, I actually printed it out too. I am trying to encourage Dan to post, he's never been a big fan of the computer. I handle all our family correspondence, photos, etc. With the business that we own he does all hands-on work and I do the office work. I have been so excited about meeting you guys though and reading all the stuff that I have been talking about it alot. He seems very interested and I told him I'd print some stuff for him. I think that will get him more interested.
SueMarie - thank you for your kind words.
Today I took Dan to have the tooth extracted and that went well. Just some expected pain. The oral surgeon said the RO told him he wants to start rad ASAP and he (OS) is afraid the area may not be totally healed in time, but said RO told him he couldn't wait. I guess this is probably normal, but as I was sitting in the waiting room I kept thinking OS would come tell me that as he was extracting the tooth he saw something... I even asked him that when he called me back at the end. I just keep expecting bad things this month.

Michelle,

You remind me of, well...me. It is almost like reading my own posts. I am the one here that handles all the nitty gritty...paperwork, bills, insurance, etc. Bill and I, over the 30 years that we have been married, have just worked out who does what..mostly depending on what we are good at and would rather handle. Bill is more hands on, fixer of broken things and overseer of the cars. He is also my hero after enduring several assaults to his body...the loss of one eye, hearing loss in one ear, and now, this OC.

I can honestly say Bill never really got grumpy with me but once, and that was because he was running a temperature of 103. He is very capable of being grumpy...I have seen him in action. So maybe Dan will not be too rough on you. Bill just kept telling me how thankful he was...I think he was so grateful to have someone take charge when he was feeling so helpless. I was thankful that he was so easy to take care of...having someone yelling at you when you are so stretched emotionally and physically would be very hard.

A couple of things that helped me keep things together:

I kept a notebook with all the pertinent info in it. In particular, all the doctor's business cards...everytime you go to a new doc, they want all the other doctor's name, addies, and phone #s (I know you know that they make plastic sheets that hold multible business cards..Stapes has them.) I would make sure to carry that notebook to every appointment...it came in handy a bunch. I also kept reports, scripts, appt. cards, and anything else I might need for myself or other medical people.

I know David mentioned keeping your husband's eating and drinking at good levels. I resorted to charting Bill's intake when the days seemed to become a big blur. We had twice-a-day radiation txs and weekly chemo and that made staying on schedule really hard. With two kids, it will be harder. It really helped me to stay focused on the two things that would give him the best healing powers...nutrition and hydration.

Keep posting and we will be there for you,

Deb

Thanks Deb for the post. As I read it I couldn't help but laugh because we are even more alike than you think. Dan can't see out of one eye and can't here out of one ear and loves to fix things too. And I've already made my notebook. I went to Target and bought a happy looking 3-ring-binder and put everything together. I had it ready for our first oncologist visit earlier this week.
I so hope that Dan is a pleasant patient, but I can't even begin to imagine the pain he'll deal with so I just pray that I can let it go. I have already met with my doctor and gotten a scrip for anti-deppresants. Also I've been overhearing Dan talk to his dad and brother about "how great I am through this, blah, blah" - well I'm taking that to heart because that's the real Dan talking and if he gets mad as we go forward I'll just have to tell myself that its the medicine talking. Now - as I sit here typing this it all sounds good - kind of like a Monday morning quarterback... But I will come back and read this post in a month and maybe have a good laugh.
I'm really worried about the kids through this. For that and just in general reasons I'm going to start a blog on the blog area. I really need a spot that I can talk about this with my honest feelings and not have to be "putting on a strong front". We have a site at www.caringbridge.org/visit/danreeder where I post updates for friends and family, but I try to keep that all about Dan.
The charting of the food/drink is an excellent idea. I was thinking earlier when I was reading David's post about the amount of water and calories - how do I ever keep up with that.
I just can't say enough how much it means to me to have found this website. I am so upset that I didn't see the brochures for this at my dentist office, ENT's office, oral surgeon's office or CAncer Center. I am going to look again before I "blast" them about it. This is just an invaluable place. I joined today so I can be an official member.

Hi Michelle
I just wanted to say I understand your concerns about trying to be a CG and a mom.

My hubby noticed a lump about the same time as yours (Oct/Nov) and after several biopsies they found tongue cancer which is Stage 4a. He will begin radiation and chemo in about 2-3 weeks after he gets a PET scan.

We have a 2 year old, as well as a 3 3/4 year old and I am 18 weeks pregnant with #3. We have no family nearby, his parents are 5 hours away and mine are in England! Luckily my eldest is in pre-school 5 mornings a week and my youngest is in daycare 3 full days a week.

One of my big concerns is how and what to tell the children. Unlike your hubby, mine didn't have surgery but trying to explain where daddy is (in hospital) and why he won't want to play with them when he comes home and take them swimming/skating etc is going to be difficult too.

Have you both decided what to tell your youngest? Or are you just going to play it by ear?

Ok Michelle,
That is just too weird about our hubbies' disabilities but I will say the first time you posted, I felt, I knew you! We are too much alike! You were like me...a sponge for information, reading, reading, reading...it was so refreshing to see your first post with intelligent and informed questions. I have admitted to this board, I am not the most patient person with those who don't research a little before asking a question. I always try to respond nicely, but if I can't, I let others respond.

Your blog will be great for you..a place to just let it out. I did a weekly update and sent it out on a distribution list to family and friends. Funny, if I was even an hour late getting it out each Tuesday, I would get phone calls and emails asking if all was OK. It would take me an hour or so to write it each week, but it helped me consolidate and make peace with what was going on at the time.

I did not have the added responsibility of small children during our "storm" and I know that it will be hard, but kids are so resilient and as long as you maintain open communication, they will be OK. In fact, Dad may be around a little more for them..he will have days that he doesn't feel like doing much more than sitting in front of the TV...good snuggle time!

OK, I am closing down for the night...I don't have kids at home anymore, but I have an 82 YO mother who underwent her second cataract surgery this morning and I am sinking from another day of caregiving...I am getting pretty good at it!

Hugs Michelle..hope you and hubby have a restful night.

Hi Michelle and welcome to OCF! My hubby was also Stage IV-A, as you can read in the signature line. Let us help you through this when you feel the need!

Lois & Buzz in NC

Michelle,

I'm kinda known around here as Mr VHC so sooner or later you were going to here my spiel about it and since you mentioned how were you going to keep up the calories I might as well get this over with. LOL When Dan gets in the serious part of his battle his mouth will really be to sore to swallow much so finding a product that can get more calories into his body with less effort is paramount. Carnation Instant Breakfast VHC which must be purchased from your pharmacy dept (no prescription needed) has a whopping 560 cals in a small 8 oz can so he will only need to swallow 4 of those a day as compared to 6 of the other popular canned nutrition drinks and that will make a big difference to him.