New diagnosis

Posted By
4/3/2012 8:53pm
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Replies: 10

Hello -

My partner has just been diagnosed with uveal melanoma. He's scheduled to have an eye removed day after tomorrow. He might join this forum after he's had the surgery, but right now he's got other things on his mind.

I'm very glad to find this group. He's been able to talk with a couple of people who have lost an eye, or lost vision in an eye, as adults. But we've never heard of OM before, and we don't know anyone who is experiencing the same thing.

We're very lucky that we live not far from Philadelphia, and he was tested and diagnosed at Wills Eye Institute. The surgery will be done there as well. That's one of the things thats helping both of us right now -- knowing that Wills is an excellent place to be if you have this particular problem.

We've already signed up for the symposium in Philadelphia in June. I hope we'll get to meet some of you there.

edamaser - (4/3/2012 - 11:31pm)

Ruth,

You are in the right place to get help and support, and you certainly are in the right place at Wills.  We have all been through what you and your partner are experiencing, with variations on the theme.

Keep us posted, and please, ask, ask, ask.

Esther

Sara - CURE OM - (4/4/2012 - 2:05am)

Dear Ruth,

"Welcome" to the place none of us want to be, but are all here to support each other.  My husband was diagnosed in 2006.  I know all too well that his journey is difficult for both patient and caregiver/partner.... we are here to support each other so please lean on us as much as you need.

Thinking of you these next few days,

Sara - CURE OM

lak - (4/4/2012 - 3:33am)

Hi Ruth,

 

I m in the UK so cannot give much advice on the US but had OM in 2006 and mets in liver in 2009 currently diesease free and well.

 

Carpe diem

 

Lesley

RuthG - (4/4/2012 - 12:08pm)

Thank you all for your kind replies.

Lesley, I'm so glad to hear you're doing well. I'm trying to take things one step at a time, but as soon as my mind starts to come to grips with the sudden diagnosis and him losing the eye, my thoughts zoom ahead to the uncertainty of the future. It's very reassuring to know that you're doing OK in spite of mets. I hope that continues!

Ruth

edamaser - (4/4/2012 - 12:43pm)

Ruth,

I got mets to the liver in 2002.  I'm still very much here.  Statistics do not mean a damn thing for individuals.

Esther

Sara - CURE OM - (4/6/2012 - 3:24am)

Dear Ruth,

I can definitely relate to your thoughts "zooming ahead."  Mine have always done that and I continue to work hard to stay present in the moment at hand and try not to let my thoughts get too far ahead of me.... I have learned, and continue to learn, that we are much less in control than we ever think we are and that worrying about what is coming down the road isn't very helpful in the end-- much easier said than done from my own experience, but something that I continue to strive for...

I hope you are hanging in there and taking care of yourself too-- even if you are just taking some breaks to sit and breathe...

Thinking of you,

Sara - CURE OM

Sara - CURE OM - (4/6/2012 - 3:24am)

Dear Ruth,

I can definitely relate to your thoughts "zooming ahead."  Mine have always done that and I continue to work hard to stay present in the moment at hand and try not to let my thoughts get too far ahead of me.... I have learned, and continue to learn, that we are much less in control than we ever think we are and that worrying about what is coming down the road isn't very helpful in the end-- much easier said than done from my own experience, but something that I continue to strive for...

I hope you are hanging in there and taking care of yourself too-- even if you are just taking some breaks to sit and breathe...

Thinking of you,

Sara - CURE OM

edamaser - (4/6/2012 - 12:44pm)

Following up on what Sara said, it is a hard lession to learn, much less believe, that we have less control than we think. But it is certainly true.

How one manages the emotional dread and panic, I really don't know, and I'm a psychologist.  For myself, my usual way of operating is to emotionally deny while intellectually coping.  I'd be a good person in a fire--calm, collected, and reasoning out what to do.  The panic/anxiety sets in later.

So, I can discuss bad news from the oncologist in a rational manner in his office, but later in the car going home, I experience the dread and panic.  I wish I could recommend a way to deal.  Maybe, if it's really bad, one could get a drug from the doc (they won't deny you) to reduce the anxiety.  I've been taking anti-depressants since the beginning of my mets (9 years), because that's what happens to me after the panic--I get depressed.  We each react in our own way.

Talking about it with someone close who sympathizes and really understands helps a lot.  If you are so inclined, sleeping helps a lot--you can deal better when you are not tired, much less exhausted.

Good luck to all who are in this mess,

Esther

SuzannefromCA - (4/4/2012 - 8:47pm)

Hi Ruth,

I lost my eye and eyelids in October. My melanoma is conjunctival melanoma. I have a patch of skin from my thigh covering the eye cavity. I will be getting a prosthesis.

Wills is awesome! Sara Lally was my surgeon and everyone is compassionate there!

I am attending the symposium and will meet you and your partner. I hope he does well and heals fast. Please keep us posted.

Hugs,

Suzanne

Every day I wake up is a gift!

Nan in Nebraska - (4/5/2012 - 9:33pm)

Hi Ruth,

As others have said, you are in the right place. I have been battling this disease since 2001 and have mets to the liver since 2009 and I feel great.

I've also signed up for the symposium in June. Hope to see you there.

Stay strong and best wishes,

Nan