Lynne Logan

Her Post
http://csn.cancer.org/node/241745

Her latest post was on Saturday, the 16th

Lynne Logan said:

I'm sorry
Hi Doris,
Has it been that long since I was here? And here I thought time was passing so slowly!
I've been having quite a time. After seeing my oncologist on the 12th and getting the news about the mets, I rushed right to my surgeon and pre op at the hospital to get the port installed the next day. So, that got cancelled due to the imaging machine being on the fritz. It was then scheduled for the following Mon with the same results. Finally on the 20th I had it installed since time was of such importance.
Except I couldn't get any word from my oncologist's office staff. Messages went unanswered, etc. Finally when they did get back to me they hadn't a clue my port was even installed and I know my surgeon called while I was still in recovery!!
Meanwhile the pain has gotten so bad and I have a high threshold. The right rib in the front is now involved too so it's spreading fast.
I finally heard from my oncologist's office and since the hospital where I receive my infusions is swamped I have to wait until July 7th for my first chemo. But wait, there's more. I also get an infusion on July 8th and on July 9th. On the 12th I was told I would be getting the typical infusions at 3 week intervals. Has anyone else been put on a schedule like this? I haven't even seen or talked to my oncologist so he doesn't know what else has come up with me. I'm just confused and naturally feeling rather down.
Love to all,
Lynne

Hi Lynn
I am very sorry that managing your own treatment has been very frustrating process for you. I can understand and relate to it deeply. While I am in contact with my oncologist who is on vacations, her office made stage IV experience even more stressful for me. Miscommunications between different departments and insurance authorization issued brought an additional pressure to took my energy away. I am glad I have completed all the tests , and can move forward with treatment. I am considering on filing several formal complaints related to delays and insensitive behavior.
Please know that your sisters are here with you and for you 24/7.
Wishing you effective treatment and caring medical staff.
New Flower

Monicalynn said:

Ill be sending you my
Ill be sending you my healing thoughts and prayers Lynne.

Hoops
It seems like way too many people are having to jump through hoops to get appointments, approvals and help when we need it most. I'd like to pass on what a friend of mine did and might be helpful for others.

Medical oncology was horrible to her. Roadblock after roadblock. It was really awful and emotional for her. She felt so helpless. I didnt' know that most health insurance companies have patient advocates, but my friend (who is very resourceful) did. The advocate made some things happen. Makes me wonder if our providers don't want to have too many complaints made with insurance companies since they could lose contracts??? Don't know what went on behind the scenes, but there were things like sudden availabilty of an appointment here and there. She also had a good rapport with her surgeon and if she ran up against that brick wall in medical oncology again, she would contact the surgeon's office because the nurse was so good at getting things done. Finally she contacted her primary care physician who talked her down off the cliff and referred her to another medical oncologist. Suddenly, things fell into place. What's particularly frightening to me is her previous med onc is also mine. .

So here are 3 potential resources you might not consider - patient advocacy via your insurance co., asking the surgeon to help, and your primary care physician.

I woman I know has Stage IV pancreatic cancer and just started a clinical trial at UCSF where she is being treated with care and compassion. On the road to getting there, she some problems with her local docs and insurance. She was outraged and said to them, "look, I have limited time here and I'm fighting for my life. Your procedures and incompetency just cost me 5 weeks of my remaining time!". I've got to remember that one.

BTW, I had my mammogram last week. I had a conflict and tried to reschedule it, but the next appointment I could get was November! That is unacceptable under any circumstances, but particularly so for a bc survivor.

All of this makes me crazy.
Suzanne