Hi Paul,

Yes, I have a caretaker. It's required in order to stay at Hope Lodge. She's my partner in life and I'm very blessed. Her positive attitude and fighting spirit is a huge benefit. She's also very pro-active concerning ways to help me...massage, cooking etc. (she's a marvelous cook and I'm going to mourn the loss of my taste buds for sure!).

The nerve pain from the surgery is still my biggest challenge. My left shoulder is still very weak and painful despite PT I'm doing at home 3X a day or more (arm raises and shoulder shrugs). You can see a big difference in my traps when I do a shoulder shrug. It's as if the nerves controlling it are gone. My RO prescribe Neurontin and it's has helped a bit but the incision area and beyond is still very sensitive and painful. Fortunately, my swallowing has improved and I've been able to eat solid foods the past week. I still have to wash things down but it's much better than it was.

If there's anything anyone can share concerning nerve pain issues I would appreciate hearing about them.

"T"

Hello, T, and welcome!
If you're a friend of Donfoo's then you're a friend of mine! ;-)
Wow-getting treated @ JH's! Holy cow! That's great you've got a good partner with you as I suspect she'll help out in a million and one ways that don't even appear necessary now.
As for the nerve pain, I've had on/off, sometimes severe pain in my bottom lip/side of face where the surgeon did my "frankenface" (lip resection) surgery. I seem to have electric shock-type pains where he joined areas together. I take gabapentin, and yes, it helps-a bit. I didn't think it was doing any good a while back and stopped taking it-YIKES!What a mistake! I know what you're going through and there might be something better for nerve pain but this but it does seem to help ease the intensity/duration of the shocks.
Hang in there, buddy-you're gonna come through all this with flying colors!
Gordon

Just for others to know, you can stay alone at Hope Lodge, but need a letter from your doctor or qualified health practioner saying you are able to care for yourself. I use neurontin, gabapentin, then lyrica, pregabalin, but more for the neuropathy in the legs, feet, which with some, is not helpful. Some vitamins may help, at least for neuropathy. Also acupuncture, acupressure, mayofacial massage, electrical stimulation, cold compress, avoiding any activities than cause episodic pain or triggers, but check with your doctors. and it's still eatly in the recovery phase. The hospital should have pain or palliative care management that can help. Glad you have a caretaker.

The pain near the ear should lessen, resolve, when the tumor shrinks from radiation, and chemo.

Mark, welcome to OCF! Glad you have found this site to help you with up to date correct medical info and support.

Im from The Allentown area, so Im not that far from where you are located.

You did a very smart thing by heading to a major cancer center. Best wishes with your upcoming treatments!

Hi GPK,

Ahhh... Johns Hopkins... what can I say? It's a two hour drive for me and worth every minute. After what I went through locally, it's a God send. Locally, it seemed as if the Dr's could care less and one hand didn't know what the other was doing. Both Marcia (my partner) and I felt the same thing and didn't feel confident in them. I called Johns Hopkins and was guided through the process by a wonderful lady named Salihah that got me all the forms I needed to fill out and was there for me with any questions. After that I was contacted by the head of the Sidney Kimmel Cancer Center and my appointment was made. They acquired all the pathology slides and test results that I couldn't provide. When I arrived. it was like a well oiled machine. Within minutes of being placed in an exam room a "Team" walked in. An ENT/Surgical Oncologist, a RO, a MO, a speech/language pathologist, an oncology nurse practitioner/manager and the head of the center. Everyone there was knowledgeable of my case history and as up on everything. I was poked, prodded and examined more in 25 minutes than I was the entire time at Winchester. Needless to say it was a no brainer. Since then, with two surgeries and overnight stays, they have been nothing less than stellar in their care. I even got a thank you/get well card from the staff that cared for me during my visits... personally signed no less! Before my first surgery, the young lady (Salihah) who guided me in the beginning, called just to wish me well

What you call "electric shock" type pain I call "ice pick" pain. It's like a sharp, very painful stabbing feeling in my neck where the incision was made and adjacent areas including my scalp, ear, and left collarbone area (where the tube came out of my neck) and shoulder. So you have that along with the general constant pain. I'll speak more with my Dr's this week about it.

Paul B...

I plan on speaking with my team about several concerns. I'm just turning the corner from the surgeries and I'm starting treatment. It's like I'm finally putting one fire out and I'm being sent off to fight another one while the first one is still smoldering.

Regardless... the time is here and now and I have to step up to the plate and at the very least get on base.

"T"

Welcome Fishmanpa! We also chose to drive nearly 2 hours each way to treatment to get to the right hospital, The University of Chicago. Our local hospital swore to us that they were the best at head and neck cancer in Lake County, but seeing as they were about to radiate my husband's head, sounded like a prudent idea to expand our search beyond the county we live in. The drive was a pain in the backside, but we cannot argue with the results...it was well worth the extra effort.

Sounds like you have made a great decision on your treatment team and are in very capable hands. Wishing you the best of luck as you head into the thick of treatment, we are all here for you, Ana

P.S. Charm, I am so very glad you explained that...I had no idea what a "frack" was!

Thanks for the welcome Christine!

I feel much more confident and relaxed knowing I'm getting the best possible care.

I know Allentown. I'm originally from the Philly/S Jersey area and I've been through there quite a few times in my lifetime

"T"

Hi Ana,

Thank you for the welcome! Fortunately, we'll be staying in Baltimore during the week. The Cancer Society has lodging and being we're traveling over 100 miles, we get to stay there free of charge and it's only a couple of blocks from the hospital

I'm looking forward to getting started and done!

"T"

Hi Mark,

Welcome to OCF - sorry you have to be here, but it is the best place for support and information.

I've had 4 surgeries for OC and the last 2 were at Johns Hopkins. Based on my experiences it is the best place for treatment with outstanding doctors and great support staff (who gets the challenges an OC patient faces after surgery).

It is about a 3 hour drive for me and well worth it. I hope your treatment goes smoothly and your healing goes quickly. I wish you the best!