It's me again. The chick with too many questions. Since they are usually seperate topics, I'll start new ones to see if anyone has advice on how to handle them. Since I'm at the start of my journey, and haven't had too many pleasant experiences with medical and hospitalization (outside of childbirth)

What worries me most is that the cancer center I have been referred to is 60 miles away from my home. Honestly, I'm more comfortable at home in my own bed than anywhere else, this includes pleasant journeys like vacations (I always miss my nest)

My main doctor, so far I only spent maybe 30 to 40 minutes with him and probably need to put my entire trust in his decisions, isn't going to have time to explain to me all the logistics. He tends to get impatient, which is why I'm glad my spouse has been with me so far, so I can say "um..dearie, did I handle myself well in there?"

Granted the last person a person would want to tick off is the doctor, so I'm trying to figure out where on the medical staff I need to address the concerns that I really can't waste the honorable doctor's time with. The cancer center that I was referred to is a large place, but it's 60 miles away from my home. Rush hour traffic through a major hub like Denver is awful. Since this is a team approach type of environment, and I haven't yet met everyone on the "team" Does one just request to see a hospital social worker to see if there are easier ways for people who live some sort of distance away from the center.

If I have to spend three hours on the road (people have already convinced me if I'm on all sorts of meds I won't be able to do this myself) on a daily basis, do people usually rent a hotel room for the number of weeks duration that you need for chemo, radiation and the like? I don't exactly know what the function of a hospital social worker is, but I'm thinking that may be the person to address concerns like logistics. I know I gotta weigh the pros and the cons of either sleeping in my own bed (enduring the travel) or renting a room somewhere that I might be ill at ease and not quite well enough to communicate.

Also I'm wondering if a Social Worker is the person you need to ask to get the flow chart of which team member to address the questions to... such as meds, reactions, do I go to the nearest local hospital if I'm in distress at home... blah blah blah blah.

Guess what I'm asking here is (and I know I'm asking many questions) since every hospital and case is different, do the hospital social workers act sort of as a patient advocate or tour director? I don't want to be chapping any hides and getting my medical staff angry at me for wasting their time with the wrong questions to the wrong people.

I'm new this whole road show. I need a map, ya know

Hello brainstorker

I can't answer questions about the US system but I too was new to hospitals etc when I started out.

An oncology nurse suggested that I keep a personal cancer journal and I have found it a wonderful companion. I recorded what doctors said, what drugs I took and how I reacted to them plus other medical procedures and how I felt about them. I wrote in it every day during radiation, just a few words about how I was and how many treatments I had to go. I still add to it now and then. Doctors like it because you can tell them exactly when you had a drug, symptom or procedure.

You are in my thoughts, love and light from Helen

Hi Brainstorker,
When I was diagnosed on April 1st, 2003, my oral surgeon called, while we were in his office, the best head and neck doc at our cancer center. This head and neck doc had me come that very minute to his office, took me straight back to the exam room, and spent over 45 minutes with my husband and myself, answering every question I had. He even hugged me when I started to cry. When it was time for me to leave, his nurse and staff had set up all my appointments for cat scans, mri's, blood work,radiation center and an appointment for my surgery. They gave me the number for the patient advocate at the hospital and gave me direct numbers for them if I had any questions. My husband and I had to do NOTHING to get my care set up. If I had gone to my first appointment and got the impression that the doctor was impatient and didn't have time for me, I would be walking out his door, not looking back, and go straight for a second opinion with a doctor that WANTED to take care of me. I'm not judging your doctor, just sharing my experience and my thoughts.
It's tough enough to deal with a diagnosis of cancer, you should NOT have to deal with unanswered questions and feeling like you have to tip toe around any staff.
In your shoes, I would be at the best facility possible even if it meant leaving my home. I'm just like you, I struggle with being away from my home and would stay in it days on end if I could. BUT, knowing what I know now, I would stay away from home for months if it meant good treatment. I was lucky that my facility was 15 minutes from my house.
Good luck and keep in mind that no one cares about your treatment as much as you do, fight for yourself and be your own number one advocate.
Take care,
Minnie

Dear Brainstorker,
I'm so sorry to hear that you need treatment. But, knowing the extent of those treatments can help you to plan ahead.
My husband and I would have done things differently had we known ahead of time that he was going to need amnifostine treatments each day before radiation. As a result, one doctor gave him the injection and then we had to hightail it 30 miles for radiation each day, and the amnifostine is time-limited. Hind-sight....we would have looked into having doctors closer together.

Love,
Mandi

Hi Jen,

I agree 100% with Minnie re. the Dr. issues. It is so important to feel comfortable with Your Dr. My ENT was as great to me as Minnie's oral surgeon was with her. He and his staff were compassionate and answered all of my questions with no pressure on me to finish quickly. When I walked out of the exam room, Rose (his nurse) gave me a big hug and then explained where and when to go for CT Scan and when surgery was scheduled. No phone calls on my part at all.

Also agree with Helen about keeping a journal. While I didn't keep one during surgery or treatment stages, I was convinced to start one during recovery. At times I felt it was the only thing that was keeping me sane. It really helped in revealing to myself my fears and the emotions that I was going thru. I ALWAYS felt better after pounding away on the keyboard.

Good Luck to You and don't forget to have a notebook filled with questions to ask Your Dr. and to write down his/her answers.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Hi Jen,

Oops, trying again. 60 miles was the distance I had to travel, too, but it is doable if you have someone to help you with the drive. You are right, it is nice to sleep in your own bed. Good luck.

Jen, any doctor worth his salt will spend as much time with you as you need. With cancer, there is no time limit or dumb question, except the one that is not asked. If your doctor doesn't have time for you, find one that does. Why spend your money on someone who doesn't want it?

As to the drive, I was also about 60 miles from the cancer center in downtown Miami. My rad appointments were at noon and the commute was a killer. There is no good time to go to downtown Miami. All the roads narrow such that there is only one highway into town, I95, and it is a parking lot most of the time. I drove myself throughout treatments until the last two days. I am an outside salesperson and visited customers most of the time and couldn't be on medications of any kind as I didn't want to fall asleep at the wheel. That would really mess up my day. So I only took drugs at night after getting home from work. So it can be done. And it is worth it to have the best possible treatment to beat this disease. So find a way to go to the cancer center. Otherwise, you are rolling the dice in a situation where there is no slack or leaway at all. Cancer is very unforgiving and if you don't hit it with all of the best treatment the first time, it can come back and ruin your day. I pray you will find a way to get the best treatment.

I traveled 60 miles a day for my treatment at a major comprehensive cancer center and I am positive, beyond a doubt, it is the ONLY reason I am alive today. Please don't shortcut your treatment options for convenience or comfort - it can cost you your life. We have seen this happen too many times here. You really only get one good shot at this. GET THE BEST MEDICAL CARE YOU CAN!

You don't EVEN want to know the trip I had to go through to get to the cancer center from my home. Involved cars boats trains.

The hospital's social worker should be able to help you with the logistical problems if there are any. That's one of the things they are there for. Cancer center I dealt with helped with hotel reservations, getting my wife's visitor's visa, etc.

Do politely let the doctor know your concerns, he may want to take them into account when setting up your treatment plan. My doc was a tremendous help with adjusting schedules to accomondate my travel arrangements.
Bob