Deb,

I was concerned about the arrangement with our "lodge" option. It is the opposite what you describe - mostly for patients only - family can stay if they have room, there is a fee (minimal $70/wk for each patient, a little more if you want a meal plan), patient must be able to care for themselves - they do have small staff of nurses, however are not equipped to give a lot of care individually to patients staying there. So you see, I'm weighing this option but I don't like the thoughts of him there on his own.......we'll see, maybe in the early stages of his treatment. As far as the PEG tube, I'm going to bring it up with his ENT. I have read enough on this site about what one goes through in the "throws" of treatment - I don't like the thoughts of adding more on top of that by getting his PEG tube during treatment. It almost seems to be too much........

Amanda,
When I had surgery (ND and partial mandibulectomy) a nasal tube was put in at the same time. Later, the nasal tube was removed under anesthsia and the PEG put in the same time. I really do not understand the controversy over the PEG. If a person breaks a leg he uses crutches until the leg can bear his weight. Removal of the PEG was only momentarily uncomfortable.

A suggestion from the grandmother of an almost 12 year old: It is amazing how we overlook the ability of children to adapt to a tough situation. Your daughter is at a natural age for "taking charge" in a household. She could write or speak to your father to let him know that she welcomes the opportunity to do her part to help by covering for you. Perhaps she would like to sit down with you and make up a schedule of jobs to be done while you are with your parents.

Best wishes,
Malka

Hi Amanda- My husband had a PEG inserted folloing his surgery and before treatment began. It has been the best thing for him as his mouth was very sore during the rads. He also had part of his lower jaw removed so there was not really an option for him. He was not thrilled with it at first and he has still lost alot of weight but he realizes it saved his life. He is still very thin but he is holding his weight at this point. He hasn't had solid food since 9/07.
Best of Luck, Sue

Amanda,
You don't say if your father will be getting chemo or not, but many people have problems with nausea from pain meds and chemo. While YOU may be able to drive 3-4 hours a day with no problem, your Dad may not be able to ride that long 5 days a week especially toward the end when energy wanes. I think you ought to try to find a place for all 3 of you to rent or stay for at least the later part of treatment. The first couple of weeks, you could try to commute Monday and Tuesday, stay over Tuesday night, go home Weds night, stay over Thurs, go home Friday but that might even be too much after the second week. I'm not certain I would want to ride 4 hours a day, 5 days a week for 8 weeks, even if I were perfectly normal and not getting treatment. The price of gas and wear and tear on the car alone has to pay for most of a hotel room or small apartment. Maybe the hospital or cancer society can help you find a place near by. It doesn't have to be in town.

Take care,
Eileen

Amanda,

When I was "interviewing" Moffitt, my RO, knowing what the previous doctors had recommended, told me that Moffitt no longer saw a benefit to a pre chemo/rad ND, opting instead to see if it was needed afterwards. He told me that (remember this was May 2006) they felt it was more important to begin the killing than it was to do the surgery and postpone the radiation until the patient recovered. Now I only had 2 suspected nodes and they were both less than 3 cm so I believe that played a role in their decision as well.

At this time Moffitt didn't know I would later test positive for HPV and just within the last 6 months my RO made the statement to me that if I was being treated today he might not have treated me as aggressively due to the HPV. I still haven't been able to ask him what he meant but I will on my next visit which I believe is in Aug

Hello All,

Thanks for your input & advice. I think we might end up commuting for the first 2 weeks - after that we will see about getting a place to stay close to the hospital. I'm going to suggest Mom books some time off from her part-time job now for the latter part of Dad's Tx so she can stay with him. This enables me to continue working so that I can help them with the financial challenges. This whole process requires a lot of planning doesn't it. And, I'm sure plans change and evolve as we go. It is helping me by getting all of your input - THANK YOU!

Malka - what a wonderful suggestion you made about my daughter. It gives her a role and a place in all this. Thank you for opening my eyes to this.

I'm not sure if Dad will have chemo or not - we'll know more after the CT on Apr. 9th - I'll post again once I know.

Thanks again for all of your support. You give me the focus I need right now.......

Concerning the lodging I know that some hotels in the area of hospitals give a preferred rate to patients and families. It is still not that cheap but better than regular rates by quite a bit. Social Worker at Princess Margaret should have that information and maybe other suggestions also.
Regarding the PEG tube placement I certainly would raise that with his RO before he starts treatment as he is at his strongest now. If he later requires tube feeding the pump and supplies are provided through the Home Care Program for 2 months time and can be extended if needed.

Hello All,

It's been a little over a year since I found this wonderful site. I am grateful for the support and wisdom that I have gained from my friends at OCF. With Dad's initial diagnosis, I was terrified as we all are. Once I became a little more educated about his diagnosis, I could better focus on helping my Dad with his battle and I was confidant that he would beat this. He did!! He got throught the radiation very well and showed amazing determination and courage. In September, a CT showed a small mass on his left lung. Initially we were told it was found early, but after further testing it was also found in a couple nodes (not related to the oral cancer). This time, we were absolutely terrified. I knew this was a different battle with a very agressive approach with more radiation and now chemotherapy. Dad really did not want the chemo, but he knew it would be all or nothing. We all just resolved to get through this together and we never talked about "statistics". Dad got through the radiation like a champ. After a two week break, he began his chemotherapy on Mar. 16th. Sadly, it hit him hard and his heart could not take this new course of action (he had lived with Angina for years). We lost him on Mar. 23rd - we really didn't even know what had hit us. We were absolutely blindsided - I'm still in shock. Mom is staying with me and my family, and will continue to do so for as long as she wants. I like having her close - it allows us to heal together.

I want to thank you all from the bottom of my heart for your kindness and wisdom. I will be back, once in a "blue moon" - you will always have a special place in my heart. Remember to say a prayer for Dad..........

How sad you all must feel after going thru all you did with your dad and still losing him to something like his heart. YOU PEOPLE HAVE HAD A LOT MORE THAN YOUR SHARE and will be in my prayers. Take care of your Mom as she like all moms are one of a kind.

Hi Amanda -

We am so sorry to hear of this news but we all are appreciative that you came back to share this with us, as much as it wasn't the outcome we hoped for. You are all in our prayers for the "sting" of his passing to leave quickly, and the comfort of happy memories and your shared closeness as a family,to bring you eventual peace. Warmly, JaneP.