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Champions tour

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

in golf they have the champions tour. It is for pro golfers over 50. It used to be called the senior tour but instead of revealing old guys golfing they promote "Champions". I say my issues don't interest stage 1 newbies but stage 3-4 people with several years experience are more my contemporaries. Quantity and quality of life issues are bigger in our champions tour. Complicated SE's, age, and other health compromises. Finances, insurance, and medical access affect us both but very differently. Never in my life could I have dreamed of a drug that costs $1k a week. And I have insurance!

I bring up this concept time to time. We are sort of like living in a commune. Or a buffet. Say what?? We each bring enough to share. With that I say, The neediest go to the front of the line. You may be joining the champions tour soon enough.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I know coming from England I am used to a different health culture. But that level of cost for a possibly life saving drug is obscene. I'm amazed you can afford it, but then you have your wonderful wife to help you. I know a couple who have been forced into bankrupcy because they have a child with a life threatening genetic disorder. Its just plain wrong.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Just my opinion, but those bas....s, in charge of such things, should be ashamed of themselves.

Donna~

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

not being charged the $ for the drug. the company is supplying it for free!!

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I consider myself still a relative "newbie" here; having been diagnosed about a month ago and 4 days out from a partial nephrectomy.  When I first stumbled on this site, I was emotionally in a bad place.  Just to see how bad you can review my initial post "I'm stunned".  The outpouring of support from NEDs, Stage 1 to Stage 4 members really helped.  As I read the many posts I was able to put my situation in perspective.  Fox, I read your posts several times and was impressed with your tenacity in fighting this.  That spirit of tenacity helped me more than you know.  I understand we all have different persepectives and situations, but that is what makes this site so rich.  I hope we don't start alienating people at different stages of this disease or in years of experience with this disease.  Whether we like it or not, we all are living with kidney cancer.  Lets continue to open dialog around what is working and what is not and support each other along the way.  Remember, we are more alike that we are different.

Take care and blessings to all,

Stub 

Srashedb
Posts: 482
Joined: Dec 2013

Fox:

don't mean to pry but I do want to get beyond the cryptic nature of some of your posts; when referring to yourself as "advanced" or "champion ", has your health changed or is there a change in your attitude or view of the disease?

In a selfish way, many newbies and not-so-newbies need your contributions (as long as it does not put an undue burden on you).

can you clarify? I get so much from your posts and from your fighting spirit 

Sarah

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Sometimes vintage comes to mind. Glad to be helpful, stubs. Sarah, I wonder I many hits I can take. Seems I have had my share. It's amazing.

Srashedb
Posts: 482
Joined: Dec 2013

Fox, you have been on this site longer than most; I joined in 2013. Back then, you and Ron were guides for me and I channeled your strengths and trials to my husband who was as weak as a kitten from the surgeries and hospitalizations.

you have definitely taken more than your share of hits and no one would blame you if you said no more; but, you don't say that and so, in a beyond kidney cancer way, you present a slice of life's meaning. You are a very special man. I agree with Stomps about vintage.

Sarah

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

You have no idea how inspiring you are for people newly arriving on this site.

Vintage? I once rode a vintage British motorcycle around Britain.

Mirrors and other extremities dropped off at random on the motorway.

Everything had to be tightened up every 100 miles because of the vibration.

The clutch ate itself and had to be rebuilt at the in-laws (Latitude about the same as the Hudson Bay)

The Electrics went as we were crossing the pennine mountains.

I cured them by the tried and tested method of swearing at everything while I kicked it.

The electrics went again (why?) when we came out of the mountains. My wife mended it by applying basic scientific skills to the circuitry.

We made it around the island, in the most memorable trip we ever had.

My brother still rides that bike (a Royal Enfield Meteor), even though it is cranky and characterful.

I like "Vintage". Its characterful and demanding.

Or would you rather be a Yamaha.?

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Wow, Stomps, what a great analogy! Keep at it, work with what you have, and make it as memorable experience as possible. That is exactly what you, Foxy and many others have done!!

I am having my thyroid removed sometime in November - and I keep saying how many body parts does a girl need, anyway? LOL. I will still be kicking - and hoping that my other parts keep hanging on. But if they don't??? There are more ways to deal with those malfunctioning parts. My motor is still running - got lots of gas! hahaha

Hugs

Jojo

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

My BMW has taken a lot abuse--from So Cal to the Arctic Circle and back, and offroad through the Mojave Desert--and it keeps on running.  A few scars but  no parts have fallen off.  Although I did remove some non-essential components to lighten it up.  A bit like me I guess (who needs an extra kidney?).

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

Won't go into details, but I could probably have the tonsils removed, again.  Could live without my spleen.  But would prefer to keep everything else that is still left, even though there are metal clips on a lot of the vessels and plates and screws in other areas.

I had labs today to determine if I will be able to have w/wo dye for the next CT.  Patience, I say to myself.  There's no reason to get upset; it's just a test.  So what if I flunked 3 times.  Maybe you'll hear about the results instead of waiting to read here.

donna_lee

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Old junk like us has a patina that takes years to appreciate. Like a car show that attracks daily drivers. "Hey lady, Love your hangin' mufflers'! You know we may be full of beauty marks but they part of who we are.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

I was without wifi for a week, just got repaired about an hour ago.  I "open" CSN and I find this jewel of amazing-ness thread!   You guys are too much, just made my day!  What a fine classy bunch!

In awe and full of gratitute!  Love to all.   

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