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now infection

LOUSWIFT
Posts: 372
Joined: Aug 2006

I am scheduled to get a port on Oct 6 and start chemo on the 11th. But today for some unknown reason I get an abscess on my big toe. Doc removes the abscess and informs me that if the labs come back thats it bacterial then I like not get the port on the 6th and my chemo will have to be put off. To be safe the doc put me on Azithromycin for five days but I must inform the doc doing the port. Years ago I had a much more radical surgery to remove my tumor (stage 3 b)but was on chemo within four weeks after surgery when I returned to work. Now I have laproscoptic surgery back to work in 14 days and the onc wants to wait six weeks to do the chemo (stage 3 b). I am in better shape and much stronger than I was during the first. Now likely more delays. I suspect the Onc will say oh no big deal maybe the surgeon got it all even though it was in three of 60 nodes whats a couple more weeks? Some times I feel like telling the doctors you might think differently if you had cancer (again). It seems like the stars are aligned against me. May be its time to pull back and just not care anymore...it draining my energy before the fight begins.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Lou, if it feels like the stars are aligned against you, those very stars dont stand still and will once again shift and soon will align with you.

LOUSWIFT
Posts: 372
Joined: Aug 2006

I know from you other posts you have some serious grey matter going for you but to be a philosopher very rare in our cancer worlds. I hope you are right! Lou

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

So here I am, Ms. take 3 steps forward, only to be forced to take 5 steps back. It seems to me, if the stars weren't aligned against me, my life would just be to darn plain and simple to enjoy!!! LOL. Not one single time has something in the cancer world came simple. Take for instance my appointment with onc at Stanford.
Step 1 Doc will take care of Onc in Stanford seeing me.
Step 2, 4 days later, no word, call onc's office, leave message.
Step 3, 2 days later, no word, call onc's office, leave message. Onc's office calls, has no idea about appt with onc in Stanford, onc's out, will email him.
Step 4, get call from onc's office, everything okayed, they tell me call Stanford for appt in afternoon to make appt.
Step 5, call onc in Stanford office, leave message.
Step 6, get call back, had gone into gravel shop and missed call.
Step 7, call Stanford onc back, leave message to call me back.
Step 8, onc in Stanford office calls back next day, leaves message.
Step 9, call onc office in Stanford back, they just called to let me know, still nothing from my onc's, give me fax number for onc to send info to.
Step 10, call onc's office and leave message.
Step 11, call onc's office next day and leave message (now on the following Friday)please fax info to Onc in Stanford here is Fax number.
Step 12, now Monday again, call onc's office leave message again,
Step 13, Tuesday, call onc's office and ask to call me back if they've contacted onc in Stanford.
Step 14, Wednesday, got call from onc's office in Stanford, have appt, Oct 18th.
And all of THAT JUST TO GET AN APPOINTMENT, this was the easiest part of it all so far!!!
I'm just saying, don't pull back, DON'T GIVE UP, and don't let it drain your energy!!!
Keep on trucking through it all my friend. If it wasn't for delay after delay, and everything went smoothly for me??? I'd have to wonder if the world was coming to an end.
Persevere my friend, persevere!!!
Winter Marie

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

ah Lou I know treatment feels like that....I remember I once had a CT scan here at home....waited drove for 3 hours to consult with the liver surgeon and he said.....where's your ct scan.....I assumed it would be transferred electronically....two ahead and one back..

you'll get there....one "toe" at a time....oucch does the toe hurt???/

maggie

LOUSWIFT
Posts: 372
Joined: Aug 2006

Actually the stupid toe feels great now, once the abscess was removed. Hopefully not toe cancer or something like that:) Thanks Lou

LOUSWIFT
Posts: 372
Joined: Aug 2006

OMG what a bunch of #%$@*&%. It's too bad that when people don't get cancer there isn't just one person we could go to and they would take it from there. Someone who knows the system; inurance;the inside turns; who to see and who not to; dealing with doctors and their staff; can get actual answers to questions rather than a pat on the head like we don't know anything. It seems like the system is set up for failure?

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Actually, it was announced in the paper that Dominican Hospital has set up an oncology nurse, whose job it is, to do everything you just suggested.
I can't wait to see how it works.
Winter Marie

LOUSWIFT
Posts: 372
Joined: Aug 2006

I'm from Missouri-I'll believe it when I see it! I'm not really from Missouri but I am pretty cynical. Hope it works

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Lou, have you thought about having a case manager assist you for those concerns you have as pointed out in your post above. Please insist on having one assigned to you from your med ins company. I found the 4 case mgrs i had from 2003 to 2009 for organ transplants, heart surgery, and cancer twice made a big difference. the case mgrs i had had direct access to the medical director within the Ins co. 2 of the 4 case mgrs i had came from my local medical group who did the authorizations for me and the ins carrier i had paid the hospital costs and out patient testing like scans while my local med group paid the DR fees and lab work. Not sure if you have the same setup but case mgr is available at from the ins carrier such as Blue Cross, Blue Shield, Cigna, Aetna .... You can also get 2 case mgrs, one from med ins co and other from local provider

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I am blessed with an AWESOME colon cancer nurse navigator. She does exactly what you've asked for. She's helped me get some financial help, done research when I've had odd things happening, and come to my appointments as extra ears and advocate (I email her in advance with my concerns and she writes it on the dry erase board for the onc so we don't miss anything). When something I ask for doesn't get done or answered, I call or email her and she gets it done. She's helped find ways to tweak my prescription orders to get the most out of my insurance. She answers my questions - if she doesn't have the answers, she researches till she finds them. And she started a colon cancer support group which I attend now. I love my nurse navigator!

AnneCan
Posts: 3692
Joined: Oct 2009

Mags is right; you will get there. Sometimes (ok most of the time) this is a very slow imperfect process + a marathon, not a sprint. Sometimes it is hard just to be patient. The stars are not aligned against you, you have a new obstacle to evade.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Remember when we considered things like that to be "an Omen"?

Best wishes, Lou!

John

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I understand you feeling you shouldn't care anymore, but I hope you'll take some time to take a deep breath and dig deep to find strength to keep going.

*hugs*
Gail

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