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How Lucky We Are !

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User
Posted 20 Dec 2014 at 02:09

Hi Everyone,

I just wanted to say how lucky we all are to have this incredible community site to air our views, our worries, our questions and there is always someone here who can provide you with answers or support.  Even with a loving family and friends around you, it can sometimes feel very lonely on the journey we are all on in our battle against cancer.  Anyone not on that journey, may never fully understand what it's really like or how we really feel. 

I have been so grateful for everyone on this site who have been there for me.  I'm really not sure how things would have been for me if I'd not been lucky enough to join this community.  I was reluctant at first to join because I didn't want to find out anything that would frighten me but found that the opposite was true.  It's given me hope and made me more confident about the future. 

If anyone is reading this who has never posted on this site, I would encourage you to do so.  You will be surprised how much it can help you.

Last week, because of my recent heart attack, I thought it might be beneficial to join a community site relating to heart problems.  I posted a message in their introduction section and a week later, there still hasn't been any replies. 

How different it was when I joined our site.  Within a very short time there were many welcome messages and messages of support.  That is why I think we are so lucky here that we all support each other.  We have times of sadness and also of great joy but most importantly, we care for each other.  Allister recently posted a message when I was in hospital recently, where he said if someone cuts one of us, we all bleed.  I think that is the true meaning of what a community site should be. 

Steve

User
Posted 20 Dec 2014 at 02:09

Hi Everyone,

I just wanted to say how lucky we all are to have this incredible community site to air our views, our worries, our questions and there is always someone here who can provide you with answers or support.  Even with a loving family and friends around you, it can sometimes feel very lonely on the journey we are all on in our battle against cancer.  Anyone not on that journey, may never fully understand what it's really like or how we really feel. 

I have been so grateful for everyone on this site who have been there for me.  I'm really not sure how things would have been for me if I'd not been lucky enough to join this community.  I was reluctant at first to join because I didn't want to find out anything that would frighten me but found that the opposite was true.  It's given me hope and made me more confident about the future. 

If anyone is reading this who has never posted on this site, I would encourage you to do so.  You will be surprised how much it can help you.

Last week, because of my recent heart attack, I thought it might be beneficial to join a community site relating to heart problems.  I posted a message in their introduction section and a week later, there still hasn't been any replies. 

How different it was when I joined our site.  Within a very short time there were many welcome messages and messages of support.  That is why I think we are so lucky here that we all support each other.  We have times of sadness and also of great joy but most importantly, we care for each other.  Allister recently posted a message when I was in hospital recently, where he said if someone cuts one of us, we all bleed.  I think that is the true meaning of what a community site should be. 

Steve

User
Posted 05 Apr 2015 at 01:16
Hi,

I think something that happened to me recently sums up the point I was making when I started this thread.

Several weeks ago, I was in avery low mood, things seemed to be going from bad to worse with the news of my mum's serious illness and I really felt as if there was no light at the end of the tunnel. Even with the support of everyone here, I was struggling. To makes things worse, I was admitted into hospital via ambulance with severe chest pains (worse than I experienced in November when I had my heart attack). I was so uncertain about what would happen next. Fortunately, tests showed that itwasn't another heart attack and may have been caused by a recent change of medication, not helped by the stress I was under at the time.

What happened the day after being admitted, tookme totally by surprise and I will be forever grateful to the person responsible.

My wife rang me to say that I'd had a parcel arrive from Amazon (on a Sunday!), so I told her to bring it in when she came to see me in the evening. When I opened the parcel, I found it was a book which I had considered buying myself some time before when it was mentioned in a private message someone had sent me. I'dthought about it and decided to wait until I was working again and earning, asmoney was getting really tight.

Iwondered who could have sent it and the more I thought about it,I realised that it could only have been the person who mentioned it in their PM, later confirmed when I had chance to contact them.

I was so moved by their act of kindness, especially when they themselves had had a really difficult time in recent months that I realised I needed to mention it, in some way on this thread, to show "How Lucky We Are" to have sucha caring community.

So, this is a chance for me to say "thank you" publicly for their kindness.

Simple acts of kindness can sometimes change people's lives.

Steve

Edited by member 05 Apr 2015 at 17:32  | Reason: Not specified

User
Posted 05 Apr 2015 at 19:32

Steve

I too have had such a kindness from another member, who going through the worst possible scenario of this disease (losing her partner) who was bothered enough about me to send me something through the post that we had been discussing on the forum. It was a food supplement. I could not believe that in the midst of everything that she was going through that she would find time to do this.

As I was not home, at the time, the parcel was returned to sender and I felt awful that her wonderful gesture had been sent back to her. Of course, I explained it to her.

What a lovely set of members on here. You are right that we are lucky to have found this site.

Alison

 

User
Posted 20 Dec 2014 at 12:28

Hi Steve very well put.

I think no one should underestimate the power of this site, and all the wonderful people who contribute to it, it is a very valuable asset to everyone who has or is affected by PCa.

There have been many people in dark places at times including myself when I was first diagnosed, and the people on this site have pulled many of us through our bad or sad times. Sadly one of the first people who ever helped me Topgun has now passed on, but I will never forget him and how he helped me out. That is why although I came through my treatment well, I will continue to be involved in this site in the hope that I can somehow help someone like he helped me. So I ask everyone who uses the site not to disappear if things get better for you, but to come on and let people know as it gives people hope and encouragement, it certainly did for me when I read a lot of the very inspirational stories on here.

The community spirit on here is fantastic, as the three musketeers used to say we are all for one and one for all.

Good luck and best wishes to ALL who are fighting or affected by cancer.

Regards,

Gerry

User
Posted 20 Dec 2014 at 12:28

Hello All,
As Tesco would put it "every little helps!"

If we all pool our knowledge and experience we can give more to those just starting down this path.
We're all different, have different experiences and results, sometimes with the same or similar treatments.

I have learnt so much from others on here, and not just about treatments and side effects.

The strength and courage of those of our community who are terminal or who have lost a loved one is very humbling and it puts your own life in perspective.

There will be those among us this Christmas who will be without their loved ones for the first time.
To all of you, I will be thinking of you, and wishing you peace and contentment with your happy memories in 2015.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2014 at 21:58

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hi Steve

I can agree all the comments made. I am not really sure how I would have coped if I had not found this forum. The forum members have really helped me particularly in my darkest moments.

I live in hope that I have had a total cure but I am still affected because of ongoing side effects (the usual one that men get uptight about!) so I still have a need to rely on member support. I also hope I can return the support extended to me to others travelling a similar path.

My thanks go to all those who contribute to the site. Wishing you all the very best for Christmas and the new year.

 

Did you mean that?  It tickled me!!!!

 

Oh dear, my choice of words wasn't the best.  However, after thinking about well yes i do need that kind of support as well - lol !!

I can see the funny side now!

Best wishes.

User
Posted 22 Dec 2014 at 21:15

Firstly totally agree with you Bri, I suppose I can now consider myself an Oldie (although not as old as some) not mentioning any nameshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

This site has been a life saver for me as I have said many times and yes we do have the odd RUMBLE IN THE JUNGLE but hey ho that's what makes life that bit more interesting.  One thing is for sure we  all know what it is like to live with pca  that is the glue that binds us.

MERRY CHRISTMAS TO EVERYONE XXXX

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
Show Most Thanked Posts
User
Posted 20 Dec 2014 at 09:35

Nicely put Steve.

I'd certainly feel a lot more isolated and feel that I was walking my road all alone if it was not for this site and others.

As it has been said, we all react to this disease in different ways so our paths are somewhat different but we only have to reach out and there is support aplenty to keep us going.

Long may it be so!

Kevin

User
Posted 20 Dec 2014 at 11:06


This site offers a huge amount of good advice mainly from contributors, ordinary people who've been there ,done that...and probably got the tee shirt too !,

it's a lifeline IMO, long may it continue, and please keep posting folks....both good and bad it really does help.

User
Posted 20 Dec 2014 at 11:15

I agree Steve,

The people within this community certainly helped me when I joined as a very frightened 'newbie' back in March this year, after I was first diagnosed.....

Since then I've learnt and experienced quite a bit during the course of my chosen  treatment path.....


Of course my knowledge is purely based on my own experience and research etc. and is very limited compared to many other members of this community who may have had to take a very different route than myself ......

I consider myself very fortunate  that my treatment has been successful so far....

I've chosen to 'hang around' this site rather than just  disappear.

Hopefully I will be able to offer words of encouragement to others who will come along with a similar diagnosis to myself in the future.

Best Wishes

Luther

User
Posted 20 Dec 2014 at 12:28

Hi Steve very well put.

I think no one should underestimate the power of this site, and all the wonderful people who contribute to it, it is a very valuable asset to everyone who has or is affected by PCa.

There have been many people in dark places at times including myself when I was first diagnosed, and the people on this site have pulled many of us through our bad or sad times. Sadly one of the first people who ever helped me Topgun has now passed on, but I will never forget him and how he helped me out. That is why although I came through my treatment well, I will continue to be involved in this site in the hope that I can somehow help someone like he helped me. So I ask everyone who uses the site not to disappear if things get better for you, but to come on and let people know as it gives people hope and encouragement, it certainly did for me when I read a lot of the very inspirational stories on here.

The community spirit on here is fantastic, as the three musketeers used to say we are all for one and one for all.

Good luck and best wishes to ALL who are fighting or affected by cancer.

Regards,

Gerry

User
Posted 20 Dec 2014 at 12:28

Hello All,
As Tesco would put it "every little helps!"

If we all pool our knowledge and experience we can give more to those just starting down this path.
We're all different, have different experiences and results, sometimes with the same or similar treatments.

I have learnt so much from others on here, and not just about treatments and side effects.

The strength and courage of those of our community who are terminal or who have lost a loved one is very humbling and it puts your own life in perspective.

There will be those among us this Christmas who will be without their loved ones for the first time.
To all of you, I will be thinking of you, and wishing you peace and contentment with your happy memories in 2015.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2014 at 13:42

It is good that after a bit of a problematic start, the forum in it's revised format has recaptured the enthusiastic and supportive helpfulness of members that was always there previously. Long may it continue to be a source of information and mutual support and yes it would be nice if those who have benefited in some way and whose treatment had put them in a good position, stayed with us for a time and perhaps let us know how they were doing from time to time. This would be an encouragement to many and help counteract the criticism that there were not many success stories.

I wish everybody a Happy Christmas in as far as this is possible. Sadly, for some it will not be the same due to a lost dear one. A special though for those affected.

Barry
User
Posted 20 Dec 2014 at 14:23

It is now 9 years since I first posted on the old site, and apart from a spell of ignoring the site because of some unpleasantness, I will keep on posting as although I don't know the modern treatments I still feel that I can contribute my five pennath every now and again.


All the very best to you all for Christmas and the New Year.

Chris.

PS. No Barry, every year it seems to be worse than the year before for losing mates, 18 in 2012, 23 in 2013 and 22 this year to November and 3 since November. (and they are only the ones I have been told about) [absent friends2, 3 and 4]

User
Posted 20 Dec 2014 at 17:10

Hi Steve,

I do rather agree with you. 

Personally, I've found the range of personalities, as well as the range of severity of PCa issues, on this blog has truly helped me to find a kind of balance about my own struggle with it.  It's just so, so easy to either drive yourself half mad with anxiety about it all or be foolishly blasé about it.

I think I've more or less now found a (fairly) sensible middle path.

Best Regards,

Patrick.

Life is a journey. You can't move forward on a journey AND stay in the same place.
User
Posted 20 Dec 2014 at 19:39
Hi Steve

I can agree all the comments made. I am not really sure how I would have coped if I had not found this forum. The forum members have really helped me particularly in my darkest moments.

I live in hope that I have had a total cure but I am still affected because of ongoing side effects (the usual one that men get uptight about!) so I still have a need to rely on member support. I also hope I can return the support extended to me to others travelling a similar path.

My thanks go to all those who contribute to the site. Wishing you all the very best for Christmas and the new year.

User
Posted 21 Dec 2014 at 19:27

Steve

 

I can honestly say that this forum (at least in it's previous format) really did save my sanity http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif. I have met many friends through here and have gone on to work for PCUK and the NCRI as a volunteer and devote what's left of my life to helping others and fighting this disease (mainly on  a political front http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif). It works for newbies and is invaluable but if you want a little less censorship and a place to chill out then visit the "Dark Side" where most are welcome http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

http://pcasupportforum.proboards.com/

 

 

Edited by member 21 Dec 2014 at 19:45  | Reason: Not specified

Nil desperandum

Allister

User
Posted 21 Dec 2014 at 20:40

Originally Posted by: Online Community Member
Hi Steve

I can agree all the comments made. I am not really sure how I would have coped if I had not found this forum. The forum members have really helped me particularly in my darkest moments.

I live in hope that I have had a total cure but I am still affected because of ongoing side effects (the usual one that men get uptight about!) so I still have a need to rely on member support. I also hope I can return the support extended to me to others travelling a similar path.

My thanks go to all those who contribute to the site. Wishing you all the very best for Christmas and the new year.

 

Did you mean that?  It tickled me!!!!

Stay Calm And Carry On.
User
Posted 21 Dec 2014 at 21:58

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hi Steve

I can agree all the comments made. I am not really sure how I would have coped if I had not found this forum. The forum members have really helped me particularly in my darkest moments.

I live in hope that I have had a total cure but I am still affected because of ongoing side effects (the usual one that men get uptight about!) so I still have a need to rely on member support. I also hope I can return the support extended to me to others travelling a similar path.

My thanks go to all those who contribute to the site. Wishing you all the very best for Christmas and the new year.

 

Did you mean that?  It tickled me!!!!

 

Oh dear, my choice of words wasn't the best.  However, after thinking about well yes i do need that kind of support as well - lol !!

I can see the funny side now!

Best wishes.

User
Posted 22 Dec 2014 at 07:27
Originally Posted by: Online Community Member

Steve

 

I can honestly say that this forum (at least in it's previous format) really did save my sanity http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif. I have met many friends through here and have gone on to work for PCUK and the NCRI as a volunteer and devote what's left of my life to helping others and fighting this disease (mainly on  a political front http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif). It works for newbies and is invaluable but if you want a little less censorship and a place to chill out then visit the "Dark Side" where most are welcome http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

http://pcasupportforum.proboards.com/

 

 

Just want to be clear that this forum works for 'oldies' as well as 'newbies'.

Bri

User
Posted 22 Dec 2014 at 21:15

Firstly totally agree with you Bri, I suppose I can now consider myself an Oldie (although not as old as some) not mentioning any nameshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

This site has been a life saver for me as I have said many times and yes we do have the odd RUMBLE IN THE JUNGLE but hey ho that's what makes life that bit more interesting.  One thing is for sure we  all know what it is like to live with pca  that is the glue that binds us.

MERRY CHRISTMAS TO EVERYONE XXXX

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Mar 2015 at 10:35

I am very happy that i found this community on the internet. I also have a loss in my family. And at least good stories from all of you helping me.

User
Posted 12 Mar 2015 at 14:39

Spot on, Steve,

I dont know how I would have coped with Neil's diagnosis and eventual death if I hadnt found this site, there was no one else out there for me, carer support didnt get a mention until the local Hospice were involved towards the end. I am not someone who naturally seeks out internet forums but I am sure glad I did this one.

 

Fiona.

User
Posted 05 Apr 2015 at 01:16
Hi,

I think something that happened to me recently sums up the point I was making when I started this thread.

Several weeks ago, I was in avery low mood, things seemed to be going from bad to worse with the news of my mum's serious illness and I really felt as if there was no light at the end of the tunnel. Even with the support of everyone here, I was struggling. To makes things worse, I was admitted into hospital via ambulance with severe chest pains (worse than I experienced in November when I had my heart attack). I was so uncertain about what would happen next. Fortunately, tests showed that itwasn't another heart attack and may have been caused by a recent change of medication, not helped by the stress I was under at the time.

What happened the day after being admitted, tookme totally by surprise and I will be forever grateful to the person responsible.

My wife rang me to say that I'd had a parcel arrive from Amazon (on a Sunday!), so I told her to bring it in when she came to see me in the evening. When I opened the parcel, I found it was a book which I had considered buying myself some time before when it was mentioned in a private message someone had sent me. I'dthought about it and decided to wait until I was working again and earning, asmoney was getting really tight.

Iwondered who could have sent it and the more I thought about it,I realised that it could only have been the person who mentioned it in their PM, later confirmed when I had chance to contact them.

I was so moved by their act of kindness, especially when they themselves had had a really difficult time in recent months that I realised I needed to mention it, in some way on this thread, to show "How Lucky We Are" to have sucha caring community.

So, this is a chance for me to say "thank you" publicly for their kindness.

Simple acts of kindness can sometimes change people's lives.

Steve

Edited by member 05 Apr 2015 at 17:32  | Reason: Not specified

User
Posted 05 Apr 2015 at 19:32

Steve

I too have had such a kindness from another member, who going through the worst possible scenario of this disease (losing her partner) who was bothered enough about me to send me something through the post that we had been discussing on the forum. It was a food supplement. I could not believe that in the midst of everything that she was going through that she would find time to do this.

As I was not home, at the time, the parcel was returned to sender and I felt awful that her wonderful gesture had been sent back to her. Of course, I explained it to her.

What a lovely set of members on here. You are right that we are lucky to have found this site.

Alison

 

 
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