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User
Posted 13 Nov 2014 at 21:04
I really appreciate the way this forum has a separate section for advanced and metastatic cancer.

From what I understand, in this country only about 10% of prostate cancer cases have metastatic cancer at diagnosis (even fewer in the US). When we tell people that Tony has prostate cancer, they often make light of it and say things like, "Oh, I've had that for 15 years and look at me!" or "My uncle got prostate cancer at 65 and he lived to be 90!".

Tony has to say, firmly, "That's not the kind of cancer I've got. Mine is in my bones. It's almost certainly going to kill me in a few years, unless something else gets me first. It's treatable, but not curable." Then people get awkward and don't know whether he's over-dramatising.

But you guys, you know what we're talking about. I don't have to bang on about how serious it is, that's understood. And having understood it, we can discuss treatment options, therapies, practical issues, and all the positive ideas, like how to make the most of every day we have left together.

So it's good to know there's a place where I can meet up with people who understand the position we've found ourselves in - the Executive Lounge of the "club that no one wants to join", if you like. Life membership comes as standard!

User
Posted 16 Nov 2014 at 18:45
Marje

I think the wierdest thing anyone ever said or did when Mick was fighting his battle was a volunteer in the local hospital who looked directly at me (I was sitting in the chair next to Mick in his wheelchair) and said "do you think your Husband would like a cup of tea and a biscuit?"

I bit my lip quite hard looked at Mick with that "Sorry" expression on my face and then he very politley took hold of the lady's hand and said "you do a wonderful job bringing us tea and biscuits, yes my wife and I would both love one thankyou, you know next time you can ask me if you like I don't bite honestly"

I always knew he was a gentleman!

I start working as a volunteer in our hospice next month, you bet I will not make that mistake.

xx

Mo

User
Posted 13 Nov 2014 at 21:04
I really appreciate the way this forum has a separate section for advanced and metastatic cancer.

From what I understand, in this country only about 10% of prostate cancer cases have metastatic cancer at diagnosis (even fewer in the US). When we tell people that Tony has prostate cancer, they often make light of it and say things like, "Oh, I've had that for 15 years and look at me!" or "My uncle got prostate cancer at 65 and he lived to be 90!".

Tony has to say, firmly, "That's not the kind of cancer I've got. Mine is in my bones. It's almost certainly going to kill me in a few years, unless something else gets me first. It's treatable, but not curable." Then people get awkward and don't know whether he's over-dramatising.

But you guys, you know what we're talking about. I don't have to bang on about how serious it is, that's understood. And having understood it, we can discuss treatment options, therapies, practical issues, and all the positive ideas, like how to make the most of every day we have left together.

So it's good to know there's a place where I can meet up with people who understand the position we've found ourselves in - the Executive Lounge of the "club that no one wants to join", if you like. Life membership comes as standard!

User
Posted 14 Nov 2014 at 19:21
Marje

hi I am Mandy, known on here as Mo which was my work nickname. I like your post here and the frank although sad reality of what is in store for Tony as a Mets member.

As a wife my journey with PCa was a tough one but my Husband had a very aggressive cancer with his most serious mets in the worst places possible. There is a small group of very much alive men on this forum many of whom have survived well beyond their prognosis so it is not all gloom and doom.

You sound as though you are a very rational thinker with a strong character, believe me that helps and so does a big sense of humour. This forum was my lfeline for 12 very complex months, it introduced me to friends who will be part of my life for as long as they survive and their families long beyond that.

Have you been given any guidance on financial support you may be able to get, I pulled a face when I was told initially and did that very aloof thing of saying Neither of us have ever claimed a benefit in our lives stuff .. however you may be entitled and some of the help comes in very handy. It is complex especially for things like life insurance policies that go beyond age 65 but help is available f you think you might want to investigate the options.

xx

Mo

Edited by member 14 Nov 2014 at 19:27  | Reason: Not specified

User
Posted 25 Nov 2014 at 21:16

As a member of this club, I have an observation that agrees with the 'oh you look much better' syndrome.

Don't forget that folk that know you and your nearest & dearest have a helping of denial; they really don't want the news to be bad, they prefer subconsciously to latch onto the stories that you'll die of something else long before the Big C gets you.

So when you get these reactions from people, be aware it is because they wish (pray?) for the best outcomes and they don't want to recognise that the diagnosis was, by implication, late into the mets stage. I too at first got annoyed with the 'you'll outlast me' brigade until I realised that (a) they don't read up so much as us and (b) they genuinely want it to be so, it is their way of being reassuring. Accept it how it is meant and don't stress.

Very best wishes to all on this site, and thanks for the balanced and knowledgeable views, the steady words and the feeling that there are loads of people out there who really care. As to volunteering, wow, I wish I had that strength and mettle, kudos in bucketfuls to dearest 'Mo'.

I do too, regards, b0b

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User
Posted 14 Nov 2014 at 06:09

Hi there and welcome. I know the perception you are talking about so well. I have people who tell me all the time how well I look and their tone implies it cannot be that serious. Well with bone met spread it is incurable and that's just it. It's great that I am nearly three years on and still not reached the sticky end and I continue to focus on life and living rather than dying, that will come when it's ready.

It's a rocky road but a journey that has had surprising highs along the way. You will certainly find many people here who maintain positivity about their prognosis. Good luck on your journey.

User
Posted 14 Nov 2014 at 09:34

Hello Marje,

What a lovely post, and yes, there are many kinds of PCa as are many different ways that we cope with it too, no two men are the same, but by comparing notes and treatment options one gets to know what is possible.

 

Keep up the posts and keep us informed as to how Tony, and you, are coping.

 

Best wishes.

Chris.

User
Posted 14 Nov 2014 at 19:21
Marje

hi I am Mandy, known on here as Mo which was my work nickname. I like your post here and the frank although sad reality of what is in store for Tony as a Mets member.

As a wife my journey with PCa was a tough one but my Husband had a very aggressive cancer with his most serious mets in the worst places possible. There is a small group of very much alive men on this forum many of whom have survived well beyond their prognosis so it is not all gloom and doom.

You sound as though you are a very rational thinker with a strong character, believe me that helps and so does a big sense of humour. This forum was my lfeline for 12 very complex months, it introduced me to friends who will be part of my life for as long as they survive and their families long beyond that.

Have you been given any guidance on financial support you may be able to get, I pulled a face when I was told initially and did that very aloof thing of saying Neither of us have ever claimed a benefit in our lives stuff .. however you may be entitled and some of the help comes in very handy. It is complex especially for things like life insurance policies that go beyond age 65 but help is available f you think you might want to investigate the options.

xx

Mo

Edited by member 14 Nov 2014 at 19:27  | Reason: Not specified

User
Posted 14 Nov 2014 at 22:09
Thanks for all the positive replies so far. I'm really touched at all the support and understanding there is on this forum.

And thanks, Mo, for the thoughtful advice about finance, but we're fortunate in that even if/when I'm on my own, I should be quite OK financially. It must be an added stress for some people if they have to worry about making ends meet. We've just been out for a nice tapas meal, and it means more to us than ever to be able to enjoy treats like this together.

Recently we went to a meeting of our local prostate cancer support group. We encountered the problem I've alluded to: many of those present had manageable forms of Pca which were unlikely ever to threaten their lives. But Tony did meet another local man who's recently been diagnosed with metastatic cancer - he is much older than we are, but he and his wife are coming round for a cup of tea next week so we can compare notes on treatment options etc.

So thanks again, one and all. Tony himself is, so far, not inclined to communicate on forums like this, but I really find it helpful to chat on behalf of both of us.

Marje

User
Posted 15 Nov 2014 at 08:10

Hi Marje

What a lovely lovely post, happy to chat anytime just drop me a message.

Keep posting could read these all day

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 Nov 2014 at 20:32
Hi Piglet

It's tough having explain that not all PCA is the same, I swear that many of my friends have ceased to believe that John even has cancer, even though he has a G10 and Mets to lymph and bone. He's done so well over the last four years, I occasionally feel like apologising!

Well I'm never going to do that, I for one am sincerely grateful for HT and the like and the support of this forum. It's been wonderful.

Lots of love

Allison xxx

User
Posted 15 Nov 2014 at 21:26

Hi Marje,

I think most of the replies that you have had so far are from those of us in the Met club, it is pretty exclusive and yes I think we have all had the comments of how well our OH looks . This is such a complex disease and yes thank fully most men are in the cure camp living with and not dying of as they say.

We all need support at some time in our lives and for those of us in the mets club never more so than know, this is where the forum helps us all , we are there for each other and no one really understands unless they are in this situation.

I am sure that some people see Trevor and think, I am sure they said he had Cancer and that was 18mths ago , there he is walking round Tesco and he parked in the disabled area TUT TUT.

Stay strong, stay positive and keep posting.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Nov 2014 at 17:10

Great post. My OH is in the Executive Lounge also, and everything you all say is true. My husband looks so well people just don't believe or forget what he has.

I've just had to remind my employers how difficult my life is and have just moved from 4 days to 3 days - time with loved ones is more important.

Glen

User
Posted 16 Nov 2014 at 18:45
Marje

I think the wierdest thing anyone ever said or did when Mick was fighting his battle was a volunteer in the local hospital who looked directly at me (I was sitting in the chair next to Mick in his wheelchair) and said "do you think your Husband would like a cup of tea and a biscuit?"

I bit my lip quite hard looked at Mick with that "Sorry" expression on my face and then he very politley took hold of the lady's hand and said "you do a wonderful job bringing us tea and biscuits, yes my wife and I would both love one thankyou, you know next time you can ask me if you like I don't bite honestly"

I always knew he was a gentleman!

I start working as a volunteer in our hospice next month, you bet I will not make that mistake.

xx

Mo

User
Posted 25 Nov 2014 at 21:16

As a member of this club, I have an observation that agrees with the 'oh you look much better' syndrome.

Don't forget that folk that know you and your nearest & dearest have a helping of denial; they really don't want the news to be bad, they prefer subconsciously to latch onto the stories that you'll die of something else long before the Big C gets you.

So when you get these reactions from people, be aware it is because they wish (pray?) for the best outcomes and they don't want to recognise that the diagnosis was, by implication, late into the mets stage. I too at first got annoyed with the 'you'll outlast me' brigade until I realised that (a) they don't read up so much as us and (b) they genuinely want it to be so, it is their way of being reassuring. Accept it how it is meant and don't stress.

Very best wishes to all on this site, and thanks for the balanced and knowledgeable views, the steady words and the feeling that there are loads of people out there who really care. As to volunteering, wow, I wish I had that strength and mettle, kudos in bucketfuls to dearest 'Mo'.

I do too, regards, b0b

 
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