We made some decisions....right ones for us I do think..

[Mackey Mouse]

Our last ride home from Boston was horrendous....Tom was not feeling well and we let the traffic get ahead of us heading out of town, in fact, we stayed at our daughters and left around 7ish, that did not work traffic was bumper to bumper.....Also, that day was a screwed up day.....the nurse waited to see if the dr was going to treat him before ordering the chemo and so the treatment that would have allowed us to finish at 10:30am, after getting up at 4:00am, and leaving the house by 4:30am, did not even start till 10:45am....so crazy day there.

Also our doctor has as an assistant for the paper work, one of the coldest unfeeling people to come down the pike. It is her way, she never consults with the patients as to what may work for them......you see if you have cancer or your loved one has cancer, they feel you should surrender your whole life to it and have no life...that is not fair, the disease itself is not fair, but we still want to maintain some normalcy... So in she comes and just plops down appts for us never consulting with us and just walks out never saying anything, that was the final straw. One was for the day after we get back from WDW, which would mean getting up at 4:00am to start the drive into Boston, the second was the day after Christmas, 12/26 getting up at 4:00am and driving up the two hours................Tom looked at me and he said time to move the treatment down here on Cape Cod. Our doctor in Boston will still be our doctor once a month and our scans will be done in Boston, but we will have another oncologist closer to home and chemo treatment is 5 minutes away...

We thought those 4 or 5 hours driving back and forth to Boston, worrying we are going to be late, getting up at the crack of dawn to not be late, well it is not worth it to us and can be better spent doing something for him or for us......We need to be consulted on what works for us too and she is just nasty to us....actually she is not suppose to even come near us, but she always manages to get her face in ours.....so we made the decision, no more in Boston, chemo on the Cape and follow-ups once a month in Boston with his doctor...scans will be in Boston too...

Supposedly our doctor is working this out for us, let's just see how long before someone does and if he past it back to his paper pusher, than we will wait a long time for sure. I think Tom said part of the reason is we cannot work with her and feel we should be consulted as to what works for us as well as what works with his schedule (he said this to his doctor, who is a very busy man, but we are very busy too trying to stop the cancer. He basically told us last time that he is very busy lecturing and that we may have to see his NP......sorry, unacceptable to us, either you are our doctor or you are not.. so now it is on our terms..

Sorry so long, but I needed to get it out....we are not just numbers and statistics we are real live breathing people who have family and lives....we are not just something you write up in a medical journal..

Thanks for listening to me.....I am still angry, I know, but I will get through that part of what is going on with us.. Maybe when we get a little magic leaving Sunday.

 

[safetymom]

Marsha you and Tom made a great decision!!!! Just because someone has cancer doesn't mean you don't get treated like a human. That has always bothered me.

I am glad to hear you made that choice. Good for you!!!! I am sure it will be better for both of you to be closer to home.

 

[escape]

oooooohhh!!! I just hate it when you are treated like a number instead of a human being. I think you made the right choice as well.

When my dad was being treated for cancer, it was important to us that we had caregivers that had some compassion and listened to our needs. We were lucky, for the most part.

Hope you have a good trip to WDW. It's extra magical this time of year.

 

[WDWLVR]

Marsha - sounds like you made a very wise choice. I'm a firm believer that you have to have a good relationship with your doctors.

It reminds me of back when I had chemo. My surgeon was wonderful, but my chemo doctor was a cold fish. Out of the blue on my 4th chemo he asked when my second look surgery was scheduled. I didn't have a 2nd surgery scheduled! He said I had to and it should be in mid September after I finished chemo. Well I was getting married in October!!!!

I talked to the surgeon and he told me that was very old school. He recommened waiting until 1 year from the inital surgery (which was March). We did and at that time did an MRI and then he recommended we don't do the surgery but keep an eye on things through my years CA-125 and MRI's. 16 years later I'm happy we made that choice.

I told Mark when I was having the MRI that if it showed I needed more chemo I was asking for a different doctor!

So please go with what your gut and your heart tells you!

 

[NHAnn]

Marsha...
I too think you two have made a very good choice.
That paper pusher should NOT be in a position to deal w/patients

Your time will be much more meaningfully spent when you do not have to deal with the travel and the...witch...on a regular basis. As far as "working it out"...squeaky wheel, you can do it Wait til you're recharged when you get back if that's possible...but perhaps you can find an ally at the Cape facility who will help get those folks in Boston on track on your terms.

((hugs))
Ann

 

[JunieJay]

Sorry so long, but I needed to get it out....we are not just numbers and statistics we are real live breathing people who have family and lives....we are not just something you write up in a medical journal..

Thanks for listening to me.....I am still angry, I know, but I will get through that part of what is going on with us.. Maybe when we get a little magic leaving Sunday.

You are so right honey. I am praying you get a little magic sent your way, you both are long overdue. I think you made the right decision here, for you and for Tom.

 

[RitaZ.]

I just came across this forum and I'm glad I did.

Marsha~ I didn't know your husband was diagnosed with cancer. I'm so sorry. It's interesting that you should bring this up. When my father was getting treatment for his brain tumor, back in 1988 and 1989, we encountered the same problem as you have. We were basically given the appointment times, not much choice in the matter. This is something that I hadn't really thought about until now. It was like we didn't matter.

I think you've made the right decision. You have the right outlook on this. Best wishes to Tom and you.

 

[snappy]

I am also behind you on this decision. It is especially wise due to the season we find ourselves in right now not to mention the darn weather. I know we don't have the issues in south Louisiana that you face in New England (my parents and younger brothers lived in Connecticut in the early 70's) with snow and ice, but I would think a local commute to be safer for you right now.

Hoping you can make your WDW trip.

 

[Shugardrawers]

Our medical teams need to get the idea that we are more than just our disease. When I stopped being Cancer Woman and started being Tammy again my whole life changed. You and your Dh need to fight this on your terms, not the terms someone else gives you. As with most other services, you have a choice in who provides them. If they can't provide them in a manner that provides Tom with a full and rich life when he so desperately needs it you really do need another doctor. Only you are your best patient advocate.

 

[rlduvall]

I have been meaning to post on this board since it was created, but haven't been able to type the words until seeing Mackey Mouse's post. Mackey Mouse: I am so sorry for your situation; my heart goes out to you. You see, my Mom (my bestfriend in the world) was diagnosed with extensive small cell lung cancer in February. Extensive small cell lung cancer is as bad as it gets. The lack of compassion on the part of the oncologist and his office is just appalling. They have looked my mother in the eye and said, with no feeling or emotion, that she WILL die and it WILL be soon; deal with it. We get treated just like Mackey Mouse and her husband.

Why do cancer doctors have to take all hope from us? It's all we have. BTW, mom was given 8-10 months to live and we are already past that timeframe. Chemo was amazing; she went into remission by the second visit. Unfortunately, it came back quickly and she is in radiation and possibly chemo AGAIN. But, she is doing amazingly well . . . then today her oncologist said, yeah, you are doing great . . . but you could die at any minute. GEEZ!!!!!! Why doesn't he just euthanize her and get it over with??? Sorry, unnecessary comment. It has really discouraged her.

My family believes in a higher power and we have given it over to God . . . if only doctors would use more compassion