scampie5

Meeting with specialist not good

20 posts in this topic

Hi All,

 

Well, my meeting wasn't too good because of my hepatitis C and not being able to tolerate chemo medication. There is not much they can give me. They are going to increase my steroids and then give me them intravenously.

 

I have about two years left to live so I will be going wild and making the most of it.

 

Lynn

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Hi Lynn,

 

I'm very sorry to hear that your appointment went so poorly. I'm sorry that there's not much else they can do for the hepatitis C. I am sending lots of warm hugs your way.

 

:emoticons-group-hug:

 

As for two years left to live, that's a tough one. But I presume they mean IF you take good care of your health in the meantime. If you go totally wild, it might be a lot shorter. Now, if you mean (as you most probably do) that you're going to take excellent care of your health plus make the most of every minute, then bravo! It's far better to be committed to living, than resigned to dying and there is always a significant chance that you will thus beat the odds, too.

 

More warm hugs for you, though. That's very difficult news to digest. We care about you and want to see you make it as long as humanly possible.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Lynn,

 

I'm so very sorry to hear your news and am also sending you a :emoticon-hug:

 

As Shelley has so wisely said, it's far better to be living every moment fully and as healthily as possible and unfortunately we none of us know how long we may have left, but every day can be a bonus. You may be able to prove the forecast wrong.

 

I'm thinking of you and sending warm wishes and another :emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Lynn,

I am sorry about your news, I have to agree with both above live every minute to the fullest, Live your wildest dreams, and maybe just maybe in the time something maybe found that will help you live to a ripe ole age... :emoticon-hug:

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I am at a loss on what to say here as I am sure the words....I am so sorry.....just don't seem enough. For someone to actually give you a time table just isn't fair. I can't even begin to imagine what you are going through and all of the things that are going through your mind. I am sure you have a "bucket" list and I hope that you are able to do each and every one of them. I will keep you in my thoughts that you will every morning be able to do something that day that makes you happy; that you are surrounded by people each day that make you happy and that love you; that you are able to smile and enjoy the little things; and that you are able to do everything you wish to do! I have a plaque that I bought when I was diagnosed that says "ENJOY THE LITTLE THINGS AS SOME DAY YOU MAY FIND THEY WERE THE BIG THINGS".

 

I send you a heartfelt huge hug!

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<<I have about two years left to live so I will be going wild and making the most of it.>>

 

Lynn ,

 

First, having a positive outlook on life is fantastic start. :emoticons-yes: Secondly, two years is a long time, medically speaking, and many break throughs could be around before you know it. I will keep you in my thoughts.

 

Take care, Everyone.

margaret

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Hi Lynn,

 

I have been following your recent posts, this one made me so sad for you, life can be so unfair, as I've got to "know you" your news has touched me deeply.

 

But, know that you will not be alone ever, we all will be walking the road with you, supporting you and hopefully making you smile!

 

Our roads are for journeys and not destinations so hopefully you will prove them all wrong and stay around with us a good long time yet, and doctors always give the worst scenarios so you go girl and prove them wrong and enjoy each day to the full and keep that smile on, okay?

 

I send you warmth,love and strength to face each new day.

 

Lynn

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40 years ago my father had an bowel cancer surgery. His general practice doctor told him that he may have 3 more years to live. My father is now 93 years old and healthy as can be in this age. Do not always trust doctors prognoses.

 

Erika

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Hello Lynn

 

I have no idea what to say to you and I have no idea how you feel. I am very sorry though and want you to know that you're a wonderful member and I hope you'll do what Erika's father did and live on many years after you're expected to.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Adding my hugs too! :emoticons-group-hug: You're in my thoughts!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Lynn,

 

Nobody has put an expiration date stamped on our foot...so I say...

live the best life you can...enjoy every moment, and do the special things

you've always wanted to do...Life is short anyway, I thought I was going to

expire in 2-3 years when I got diagnosed and told my lungs were horrible. It's

been 2 years on the 18th of June, and I'm still here :) And working hard at staying,

I have too much to do to think the end is near....We care about you and will be

here for you!!! HUGS HUGS HUGS!!!

 

susieq40 :emoticons-group-hug:

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Hi Lynn,

 

My heart goes out to you with how you must be feeling and trying to absorb all of this.

 

I had a very dear friend who was initially given 6 wks, then 6 mos and she cheated the doctors, lived her life to the fullest and healthily and lived a total of 5 more years! So, you KNOW that the doctors don't have a pulse on EVERYTHING.

 

Besides, what IS important for you to know.... is that we ALL :emoticons-group-hug: care greatly about you and our hope is that you live the best you are able in whatEVER time you have left, Lynn.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Lynn,

 

I don't post very often but wanted you to know how sorry I am that you got this prognosis. I too have been told by my heart doctor there is nothing more that can be done. I have pulmonary hypertension and it is stage 4. But I have a wonderful pulmonologist who is trying to give me more time. He has put me on remodulin and even with the side effects I am doing a little better already. Of course it is no cure but I'm blessed every day I wake up. I know all those feelings you must have going through your head. It is very hard and I suggest you find someone you can talk to in detail about all of this--it helps. Take care of yourself but every day notice all the little things in life that mean so much more now.

 

Linda

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Lynn,

Ditto to EVERYTHING that has already been said. But most importantly - doctors who predict how much time you have left have been proven wrong over and over again. With your positive attitude, healthy fun living (that's possible you know :)) and lots of social interaction with family and friends, you might just prove another doctor wrong and out live us all. I will certainly keep my fingers crossed for you Darlin!

 

Lots and lots of hugs (((((((((((((((HUGS))))))))))))))))))))


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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