Amanda,

How are you and your Dad doing?

Hi Tom,

Thanks for following up - you guys are all pretty amazing people on this site. I have been reading through a lot of the threads and I'm taking it all in a little at a time. We went for Dad's "radiation planning" appt. yesterday. It's quite a reality check for us, but we are coping pretty well. Dad's ENT & RO at this time have diagnosed him as T2 - he doesn't get his CT until Apr. 9th - so we don't really have a complete diagnosis yet. His RO feels at this time that he is T2N0M0 - but this will be confirmed after his CT. His treatment plan thus far is 25 x IRMT. No surgery at this point, which kind of has me puzzled - it appears that a lot have the neck dissection (to check nodes?). His tumor is located in the area just behind his wisdom teeth which I understand is quite a radical procedure in terms of surgery to remove (mandible swing I believe). We are just trying to sort out a plan to get him to his treatments - it will be a 3-4 hour round trip of driving each day for 5 weeks. It really doesn't matter to me, I will do what needs to be done (my parents are scared to death of driving in a large city). My Dad feels like a burden already - and it pains me to know he feels this way. All I can do is reassure him. He's worried about my time away from my husband and 12 year old daughter - I tell him it's a very small sacfifice that we all make for a very, very good cause. Anyway, we are very happy with all of his doctors, nurses and case workers. I will breathe a little easier after the CT diagnosis - no matter what the diagnosis is. It is what it is and I will do what needs to be done. He's my Dad and I love him.

Amanda you sound like you have such great strenght! I know your family is so proud to have you. I recall my mother feeling like such a burden throughout her cancer and I would just matter of factly reassure her and say well wouldn't you do it for me? Ok then - hush - I love you, where else would I be. Do yall have any more family and friends that can help with the trip and give you a break sometimes? Do you live near your parents? We will keep you in our prayers - especially for the upcoming CT scan. I have noticed that there are so many different variables to head and neck cancer that it's really hard to compare apples to apples regarding treatment. My last thought is I think you are right about breathing easier with a diagnosis. That was a "milestone" for me, along with finally starting treatment.

Amanda,

Not all of us ended up having ND's. I was told by 4 doctors that I needed either a RND or a Partial but my last doctor (Moffitt Cancer Institute) said not before chemo/rad but maybe after which did not materialize.

Michelle,

The only family we have in Canada is myself & my parents (the rest are in England). My parents don't have many friends and all of mine work. I live about an hour away from them. The driving will be a challenge, but I'm up for it. My Dad's battle will be our focus - he'll have much more to contend with. It's all good.....You are so right about comparing apples to apples - that's why I'm anxious about the CT and our follow up with Dad's RO. I've always been more reassured in life with a "direction" good, bad or indifferent.

David,

You sitiation is very encouraging - I know the surgery can be quite extreme and I didn't want to see Dad go through that. I've read in one of the threads that more doctors are not opting for surgery initally (perhaps waiting to see where the patient is after Tx). Am I reading this correctly? Is this a positive trend or is it too soon to tell?

Amanda,
Like David, I didn't have surgery either. Has there been any talk about getting a peg tube for feeding and nutrition? My ENT put mine in before treatment started. I understand how you feel reassured once a plan was in place for treatment.

Something to check into is whether your hospital has a place near it for your parents to stay for free during the week for treatment. I went to University Hospital in Cleveland and there was a place called the Hope Lodge which was run by the American Cancer Society. My wife and 12 yr old daughter stayed their for free while I was in the hospital each of the weeks getting my chemo. Talk to a social worker at the hospital.

Tom,

I had the same thought as you about the American Cancer Society and their Hope Lodges...just really was impressed with their facility in Tampa near the Moffitt CCC.

But, note that Amanda lives in Canada...different situation. With gas prices being what they are, Amanda, I would consider looking for some type of temporary living arrangement while your Dad undergoes treatment. Those long trips will be hard on everyone, especially late in the treatment regime. You do what you have to do, but maybe there is a way to make this better for your Dad and all the rest of you.

Deb

Tom & Deb,

Great advice about the "lodges". We do have that option for Princess Margaret Hospital in Toronto, however, Mom might not be able to stay with him in the lodge(depends on current demand - they only have about 150 beds, patients take priority of course). We just can't see him down there on his own, even if it is for 5 days a week. We are checking it out - it certainly makes more sense. Dad's ENT has not mentioned a PEG tube at this point. I'm a little concerned because Dad already takes meds daily for a heart condition (Angina). Is it better to get this done now? I know not everyone needs it and it appears different people have different views on wheather to have one or not. I just wonder whether it would be best to do this now given the fact that he already has daily meds to take.....not sure what is best.

Amanda,

Oddly enough, one of the requirements to stay at the ACH's Hope Lodge is that you have a caregiver...they will not let you stay by yourself. Each suite has a living area, and a bedroom with two beds...all the amenities except for a kitchen...that is downstairs (several of them.) I was just blown over about how nice the place was and everything available to the patients and families. No charge and no review of your financial situation.

Re the PEG:

Knowing the stress and physical toll of having the PEG placed pre-treatment in Bill, I would be concerned about doing in in an older patient debilitated by radiation and chemo treatments. I know it is done, but Bill was sore and had all the post anesthesia recovery and I was so greatful that he was relatively healthy when it was done.

Deb

We were also totally impressed with the Hope Lodge. The only thing was that my wife had to clean the room/bathroom/wash sheets when she was done. They supply all the cleaning supplies, you just do the work. Still, it was free. I guess you could figure the cost of gas and compare that to the cost of renting a place if you had to.

If the Dr is planning on putting a peg tube in, it might be less stressful to do it before treatment starts. I didn't start using mine until the 4th week of radiation when my mouth was to sore to eat or drink anything and I lost my taste and apetite.