Still waiting for Tykerb!

Sandy H · 08-21-2006, 02:07 PM

Well, here it is going on 10 weeks. Was told today, after signing forms, it would be here on Monday Aug. 28th. I did tell them I just don't think we should have to wait this long!! She said its because I am the first to get it at my hospital and so all the paperwork had to be done and the next patients it would much easier and not take so long. I told her I would hope so and that would be wonderful but it still does not help me. Patients can die in that length of time!!! I felt bad because last week I got angry with the Data Manager and she called me every day to see if I was o.k.!!! I told her I am sorry I am wasting everyone's time on so much paperwork as it seems that is all I have heard. I told her my cancer isn't hearing a word she is telling me as it keeps right on working eating up my body and killing me. My skin mets do not show up on any scans, or tumor markers so it looks as though I am fine. I told her when your chest feels like it is covered with bacon fat burning and nothing stops it then 10 weeks is a long time to wait!!! Well, I had to vent and so we continue to wait and I know its only 7 more days but that is still a long time when bacon fat is on fire!!!! My heart goes out to others who may be in the waiting mode. Looks like if you are the first one to get it at your facility then you have a long wait. I asked her what about those that don't have the time to wait?? I am praying its not too late for me. Thanks for listening to me vent. I had a call from our dear Angel Christine last evening and I felt so much better after talking to her it made me feel like someone really cares about us!!! hugs, Sandy

Maggie · 08-21-2006, 04:32 PM

Sandy,

I'm so sorry you have to wait so long for the report. How terribly scarry all this waiting must be for you. I can't even imagine!

Please keep us posted!

Hugs to you,
Maggie

Becky · 08-21-2006, 05:13 PM

Dear Sandy

I am thinking about you all the time. It is hard to always stay so strong. I am amazed at you, your positive and fighting spirit. The wait will be over soon. Is there something (like Xeloda ointment) that your onc can give you to help relieve some of the skin symptoms and put that at ease for a couple of days? I am sure this is a mundane statement on my part as you have been waging this battle for quite a few years and very successfully too. You are a hero to all of us.

Big hugs and kisses to you. I am praying hard and Monday will be here before you know it.

Love, Becky

RhondaH · 08-21-2006, 05:42 PM

Take care and God bless.

Rhonda

Barbara H. · 08-21-2006, 05:59 PM

Sandy, I do care about you and the thought of what you are going through with the skin mets sounds awful. I hope that your Tykerb arrives on Monday.
Best wishes,
Barbara H.

Sandy H · 08-21-2006, 08:04 PM

Becky, I never thought about the xeloda cream. I talked to my doctor about it last year and he said it would be worth a try and I forgot about it. I may ask him about it. He said it could be compounded. I love this site always someone ready to help and give us suggestions. We all understand each other in a nonjudgemental way. Anyway, I am going to camp Thursday evening and returning Monday in time for my appointment. My husband went this past weekend and I chose to stay home so did not have his support. I love it there no phone, TV, or doorbells ringing or appointments to worry about. I can listen to music or have it quiet. Thank you all for encouragement its what I need right now. hugs, Sandy

chrisy · 08-21-2006, 08:07 PM

Sandy,

I think about you every day and when I saw the title on your post I just let out this exasperated ARGGG (or something like that). You are certainly entitled to vent and although you felt the need to apologize to your paper-shufflers, don't ever say YOU are wasting THEIR time. I think it is the other way around.

It does sound like they do care, are on your side and doing their best, but they simply cannot understand it or want it the same way you do. I bet your description of the pain you are in got their attention - it sure got mine! I don't think I'll ever be able to eat bacon again (probably a good thing)

I'm so distressed you are having to go through this and hope with all my might that they do NOT miss their promised date. You're a true pioneer - sorry it has been so difficult. And don't even THINK about it being too late!
Much love,
Chris