Agree with everyone really , in the cure camp , not in the cure camp we have all got our Demons . Trying to stay positive in the non cure camp is a bloody joke to be honest there isn't any help for us either .
If I ranted and raved , made numerous phone calls and jumped up and down then maybe someone would knock on my door to offer help but it is not freely offered , no one approaches me to ask what do you need .
Of course in the beginning of our journey cancer occupied my first thought every morning and my last thought at night, know it's just my second thought every morning and my still my last thought at night.
Try as we might with a terminal diagnosis it is a dark cloak that surrounds you, every day and every night you can't shrug it of it becomes part of you . I think the trick is not to let it define you , don't let it be you. . Don't let cancer become more important than life , Live , love and defy its cruel hand shake. If you let it take over your life then it will. All of us touched by it have a choice , ok it takes a while to get there but living without fear is so much sweeter.
BFN
Julie X
Edited by member 15 Oct 2016 at 20:36
| Reason: Not specified
NEVER LAUGH AT A LIVE DRAGON |
User
Bri, i was making a bit of a rude joke - i thought it might give you a smile.
Edited to say thank you to Dave K for editing :-)
Edited by member 09 Oct 2016 at 22:12
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Dave, I' but I'm not sure why you would feel an intruder on this forum (if that's what you mean by 'your group'). You have had PCa and endured the treatment and side effects I refer to so you are a valid member.
However, I'm not sure about some of the content of your post as it is quite insensitive when considering the needs of others. I see you wrote it in the early hours. Would you feel obliged to edit it in the cold light of day. Obviously if you do not wish to that is your choice.
Thanks
Bri
Edited by member 09 Oct 2016 at 09:25
| Reason: Not specified
User
Hi Bri,
I just thought that i,d respond to your post, i dont often post on here although i observe quite often, its good to know other people are experiencing the same things as you.. well not good .. but makes you feel less alone if you understand what i mean..
Also you were one of the ones who respnded to my first post, so thank you for that ..
i think my stats are on here but i was diagnosed pca T2 which changed to T3 after histology in jul 15, had robotic prostactomy aug 15 ..
Now so far my psa results have been great 00.5 00,6 , 00.7 , 00.6 .. i see all the posts on here and think how lucky i am as far as that goes, as for the in continence ,, well maybe i drew the short straw as 14 months in i,m still wearing pads, although for the first 12 months i was wearing the full wrap round jobby, but now im down to tena 2 .. which of course is a great improvement ..
But alas 12 months on i hit a wall as they say... felt really down , couldnt sleep, was having all kinds of dreams etc.. my gp said it was some kind of PTSD ... so this is a warning to people reading this that it can happen.. all my friends said "i cant believe how youre dealing with this" and i was... and then WHAM... so i spose im saying were all human and sometimes our brain puts "things" away to deal with at a later date.. i,m on anti depreesant/anxiety meds at the mo and dont like that.. but i also dont like not being me either..
My personal situation is... single, no girlfriend, only one brother who lives miles away and doesnt contact very much, but ive always been a bit of a loner and havent realised how important having a close family and circle of friends is... so if you have this , cherish it ....
So at the mo the ED is not a problem to me as ive nobody to share an erection with :)
So this post is in response to Bri who i can tell from his many supportive posts to other people on here is a nice fella :
Keep the the faith old cock and god bless ya :)
User
I have read this thread and watched it unfold. I am in the incurable camp and as some have inferred , I am not cursed with a long future life without sex, in fact my initial prognosis indicated I could have departed this planet in the next few weeks, thankfully if that does happen it won't be down to PC.
I will never really be able to see the discussion emotionally from the probably cured side of things as they will never be able to see things (hopefully) from the incurable side however what my own mental experience and sadness on occasions has given me is the clarity of mind that life is for living.
To quote the appropriately great Forest Gump, " life is a box of chocolates, you just never know what one you are gonna get", I have somehow found the personal mental strength to push my physical strength to never give up on what is important. So I can't get an erection , I won't be here for as long as I had previously expected, I feel nauseous most of the time, I get the flushes, the no sleep etc BUT I also get the daily choice to mope or live, to sit in a morose comfort zone or push my boundaries as much as and beyond what I dare.
I do not infer in any way or mean to offend in any way those who are stuck in a downward spiral to say it is not real or disabilitating in life, I accept PTSD is very real and hard/impossible to cope with but I believe ( perhaps naively) that everyone has a choice every morning, you can choose to smile or scowl at the world you can do something good ( for you or others) or you can do nothing. The hard bit and believe me despite my preaching here I was there when I started chemo amongst other times, is making the first mental choice of the day.
I love my life, I love my family, I love running ( really I hear you say!) , I type this lying in the bath after a 15 mile hilly run with friends, I didn't sleep last night and got up at 5-15 but did it matter, no.
So I guess I am saying , for those worrying about things they can't change try so hard to do things about what you can change, every day is a gift. When I was diagnosed I vowed that from that day forward I must not regret any day as on my death bed I can not look back with regrets as that would have been a waste of a day. So far I have none (although I may regret this post if anyone misunderstands me negatively lol).
Have a great day, I know I will.
Kevla
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Guys,
I know as someone with one foot in the potentially curable camp, that many would say we cannot possibly know what it is like to be in the incurable camp, and we should perhaps shut up? But I have spent the last 9 years sat on the fence between the two camps, wobbling, never quite sure which side of that fence I will ultimately fall.
Like everyone else, upon diagnosis I went through all of the life's a b****, why me, what did I do to deserve this, God are you there, are you listening God?
Then when treatment seems to be working, and other, better men than me, younger men, fitter men, more virtuous men, pass through St Peter's gate, I go through all of the emotions again, you know, thank you God, but what did I do to deserve this, why was I spared? Almost a feeling of guilt.
But then again, what exactly is a cure? I have heard more than one doctor describe it as keeping you alive long enough to die of something else. So I won't actually know whether I was cured until I am dead?
So however we look at it, we are all coming to the end of this marvelous and stupid game called life, not long now, all we can do is fill every day with fun, do what we have always wanted to do, be nice to our loved ones, and when we feel sad and lonely, just reflect on the fact that we need to have bad days to make the good days great!
:)
Dave
User
Almost four years on from dx and following 2 lots of radical treatment that awful feeling of loneliness still descends now and again. I don't think anyone who hasn't had a dx of cancer can quite understand that feeling.
The words cure and remission are used so often. I think there was reference to heroic cure recently. It certainly doesn't feel like that to me.
I posted before about once the treatment is over how isolated one can feel. I've never really had the opportunity to talk to anyone about the side effects of the surgery I had. I find it difficult posting on here about intimate detail as I meet up with some of the people including some of the females. I've never bored my friends with it and to be honest they wouldn't understand. The follow up from urology is non existent and the GP doesn't get it.
So I amongst many other men are left feeling isolated. Yes we are in a much better place than so many others and I am thankful for that. But it comes at a price and I'm beginning to think the price is too high.
Bri
User
Heartfelt Bri - I think John would know that place where you are. What you need is a Zoe but I don't think she could drive all the way to Doncaster.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Bri
I've noticed in my time on here people who are very private about their feelings and particularly about their side-effects , then there are people like myself who have always talked too much and wear their hearts on their sleeve. It takes all sorts but hopefully we are all learning from each other on this forum. For instance although you don't talk about , you have been exposed regularly to the erection posts and Cialis posts and pump posts , giving you to be honest all the info you need.
Have you spoken to the PCUK nurses. They are very neutral but very knowledgable also and believe me they will talk about anything. Feel free to PM me if something is niggling you ok.
Yes it's a very lonely place. I have happy days /weeks , then periods of utter despair. It's like grieving for something you have lost. The best I will be has been this last 6 months and now I'm back on the rollercoaster again. Downhill from now on I think. Wine helps !
Chris
User
Bri
Yep. I felt it would improve as time thankfully marched on but no. The main imcreasing emotion of these past years is why should I be so lucky (avoiding further treatment) mixed with how long can my luck hold out. I've found over the years not to try to dimiss or ignore those feelings just let them come as they subdue quicker that way.
Ray
User
Yeh I get the sword hanging over you. I don't know whether it's worse for you , potentially cured , or for people like myself with permanent treatment ahead. But it's constant worry either way and most people don't understand. I've started at Wessex cancer. I have a massage and a counsellor. It seems to help. Keep strong
User
Bri
that is a post from your heart. You are absolutely right unless someone has walked in the same shoes and down the same path they cannot know what it feels like. Some folks try to empathise or understand and others just hide away from it all together. Others claim to understand but they do not.
As for talking openly on here or down the pub with your mates about the SEs of the treatments and of living with this disease, then that is something that is and always should be a personal choice. Some men can and do, some men can't and don't. Having said that when you do feel you need some support it should be there for you and clearly in your area it is not, well at least it is not immediately obvious. Maybe somebody in the same location can advise if they know differently.
I know no words that can relate to the emotional side of cancer dread but others on here like Ray do, so I hope you can get a little support on the emotional aspects from the forum by hearing about other people's coping strategies or indeed by just knowing that you are not unique and neither are you alone.
My very best wishes
xx
Mo
User
Bri
When I first started on my journey I attended a local support group. The guest speaker talked about a new approach to care at our hospital. They were going to have an holistic approach to the care of prostate patients and treat the whole person not just the cancer. Although our Urology staff are probably second to none the holistic bit never really happened, we answered questionnaires about feelings and our physical condition but there was no real interaction.
You amongst others on this site have been a great help to me,but I get the lonely place bit. I admire those who can put the cancer in the back of their mind, but every time I urinate I am reminded of my condition and how I miss a spontaneous love life. I said in a post the other day I feel in limbo waiting for results.
I tend not to speak to friends about my issues I talk to total strangers.
As you said in your initial post we are alot better off than many and for that I am grateful.
Take care.
Thanks Chris
User
Bri,
I admire you for opening this conversation and I cam imagine there are many men that find it difficult to talk about ED let alone the big C I think it changes you as a person and it sets you apart from the rest of the normal world .
Our worlds are forever changed we are all different People after those fateful words, I have often thought how hard it would be to have a possible cure and then live with the what ifs for the rest of your life.
I so agree with DM I for one never tell people how difficult life is I think mainly because I don't want others to feel bad or awkward, I don't want them to treat me differently so I smile and I joke it serves to protect others as well as myself.
I do think after care for cancer patients is terrible but most after care in this country is severely lacking , just thinking of soldiers returning from war . I have seen the advert about after care service for cancer patients but as usual that is only for private patients.
The sword hanging over your head is so true, this week for us has been a good week, next week who knows.
Heart felt and a very good post, I can't offer helpful solutions in fact the only thing I can say is ! Hang in there Bri Time is the best Healer !
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
It IS a lonely place.
There is a site, YANA.
It's not true. You are, we all are.
All the sympathy, all the empathy, all the pathy of whatever sort, matters not a jot.
When the light goes out at the end of my day, I am the one who will wake up knowing I have had cancer in me, have had cancer removed from me, and hoping that cancer will not visit me again.
And wondering if today will be the day that my sword will fall?
But, you have a choice. You can choose to feel sorry and worry and live in fear? Or you can choose to take the approach of make the most out of every minute of every day, and enjoy life to extremes every day, and laugh loudly and raucously, and drink to excess on occasion, more than you should maybe, so what, and party and become a tad hedonist wherever you may?
It took me a while to reach acceptance of my fate, and I do feel better. But every now and then IT, the dark thoughts, get to me and I sob, to excess probably and then drink to excess probably.
For some the road to acceptance is longer than for others, for some it may be never-ending. I hope your road is not the latter?
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sorry to hear your mental struggle Bri. You have had a difficult couple of years with other stuff too. No amount of advice about how I or others might cope will touch the side of your mental anguish, because it is yours and only you get inside that.
I could tell you that I put aside cancer after 10 years or so after diagnosis in 1982 but it did change me and the word long felt as if it belonged to me. When I got PCa with an incurable and thus ultimately terminal diagnosis I found acceptable after a mental battle easier because of my previous engagement. But you are forever changed, forever even if only in your own head, occupied by the cancer. We try loads of ways to divert ourselves and the gift of your grandchildren is, I am sure, one diversion you relish, but the reminders come back.
Stay strong and try and give voice to your fears I believe strongly it helps to name them, they then seem more manageable in the light of day.
User
Hi Bri
Your post hit the spot with me. I have been lucky with a successful op and three years of non detectable test results. incontinence is practically nil but ED is a problem. so i should be a happy man and most of the time I am. I have a full life which takes my mind off things.
Yes at times i think why did it happen to me and it could come back.I try to be optimistic but wary.I have days when i sit and cant believe it happened. But i say to myself i got through it and life is nearly back to normal.
I became very positive before the op and have continued to be so. I keep smiling for everyone and dont really discuss my true feelings. a few months after the op i got fed up being so strong. it was such an effort telling everyone how well i was. everyone was telling me how well i looked and i felt i had to keep up this face. But deep down i just wanted a few days off from being strong and wanted to just go to bed and curl up. i think of what i had to go through, especially the stress of the diagnosis and the op.
Countryboy has summed alot of my feelings so well. i was the one who had the cancer and had to live through it. none of my family or friends can really understand it. i dont talk to anyone about it too deeply. i have close friends and i can talk to them and they listen.
Since the op i have made new friends through various new interests and have a temporary winter job in a warehouse. I have not told anyone about my cancer. The reason being is that i want to be treated like everyone else and not a person who has had cancer. If i meet someone who has had this cancer or maybe another type then i will tell them. I have found in the past that if i tell someone about my cancer then they sometimes feel awkward or seem to treat me like someone who needs help. maybe i am wrong about this and i should be more open. but everyone has their own way of dealing with this.
I did find that it was a time when you really found out who your friends and family are. My friends were fantastic and some distant friends became even better friends with their actions. But some of my family disappointed me. Certain members of the family never contacted me in anyway. I did think they were maybe unsure of how to communicate with me but sadly i found out that they were too busy with their own lives. They were before my cancer and still are. 3 years on and when i meet them they never ask how my tests are or if i need more treatment. These are family who live within 2 miles of me! So i have alot of bitterness inside me which i keep inside but one day may come out. This post is the first time i have mentioned it. On the other hand the rest of the family were marvellous and still are .
4 weeks ago my wife was diagnosed with grad one breast cancer. she had an op yesterday and we get results next week to see if it has spread. in this situation i can understand her mental stress and its been horrible to see. i have been able to help and say the right things and do the right things. But i have still felt helpless as it is her suffering.
So Bri we do understand how you feel and its great that you can come on here and express your feelings. Thank goodness for this board which has been a tremendous help to us all. I hope you have more positive days than bad ones.
User
HI Bri I think those dark thoughts come to us all myself i do feel down at times , yet life goes on , I have all our animals to look after who give me unconditional love and affection no matter what.
I do have to give myself a telling off at times usually goes something like pull yourself together and you made your choice you where told the side effects so get a grip .
Hope your mood improves. all the best Andy
User
Hhhhm - not ideal. I thought perhaps you would get external supervision. When you feel most isolated, try to remind yourself that we are all next to you even when we are far away.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Exactly Lyn
We are all here Bri. I think you've stepped over a big hurdle already this week. I know you meet with some members but we are mostly anonymous. Where else to get it out of your system?
User
Not at all, I fully understand where Chris is coming from
Bri
User
Believe me getting up six times a night to pee, urinating another 10 times during the day, going into retention a couple of times a day, sticking a catheter into your penis to perform ISD twice a day and another couple of times a day to release retention, urinating at a flow rate of 2mls / sec is not a joke.
Thanks Chris
User
Unfair CB - his comments were directed to DM and failed to take into account how very ill her husband has been. That isn't censorship - that's reminding someone that not everyone has the same journey.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Don't worry Dave,
I have been aboard many a Tramp Steamer and had a fair few daliences worth a Sallor.😄
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Guys,
Having apologised for crass comments, I feel I must also apologise for distracting you from the very good points Brian was making with this posting.
As he said '...So I amongst many other men are left feeling isolated. Yes we are in a much better place than so many others and I am thankful for that. But it comes at a price and I'm beginning to think the price is too high...'
The point I was going to make, or should have made, is that while I can satisfy my lady physically using techniques that don't require a fully fledged erection, I am not in a fit state to allow her to return the favour, yes we can have fun seeing how well the Viagra is working today, but deep down we know its not like it used to be.
Sex is about love, because my wife loves me, she doesn't merely want me to satisfy her, she also wants to satisfy me, it is important to her , and it doesn't matter what she does, or what I do, we both know that isn't going to happen, at least not like it used to.
That is why I sometimes get drunk and rage against the world, and I think that is what Brian is talking about when he asks if the price is too high.
A nurse once told me a story about an old man she looked after, he was over 100 and she congratulated him on his good luck living to that age. He responded that it wasn't good luck, he saw it as a curse, his wife had died, his son had died, his friends had died, he was cursed to be kept alive, sad and lonely in a hospital bed, looked after by strangers, when everyone he had shared his life with had gone.
I cherish the love of my wife, without it life would be much poorer, I do what I can feed that love, and I do my best sexually, we have our moments. But at times I think we are just kidding ourselves and that is how PCa hurts, even those of us lucky enough to be 'cured' carry the scars.
Its at times like this that I am tempted to reach for the bottle.
:)
Dave
User
If anyone is thinking to post comments to DM or to send her a private message about the above exchange, please don't. She is okay but close to breaking point and feels that she just needs to concentrate on her health and looking after John so she is going to have a break from the forum for a while. Some of us are in touch with her on facebook and will be keeping an eye on her, or doing anything we can to help.
Edited by member 10 Oct 2016 at 22:00
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberIsn't it a bit worrying that most of us never meet but we can tell when someone's had a couple more than usual!
Rage on DK - if I wasn't tee total I would probably have got lashed this weekend :-)
No, it's reassuring. Just as some can sense when someone has posted when they have been a bit tetchy. ;-)
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
What a lovely post Keef - you sound like a great fellow as well
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Brian
Just a quick post as I wanted to say thank you for your honesty in starting this tread, in a sad way it is comforting to hear others stories and to see how others have coped, coping or not, and thank you to all for your honesty in your responses.
Show Most Thanked Posts
User
Heartfelt Bri - I think John would know that place where you are. What you need is a Zoe but I don't think she could drive all the way to Doncaster.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Bri
I've noticed in my time on here people who are very private about their feelings and particularly about their side-effects , then there are people like myself who have always talked too much and wear their hearts on their sleeve. It takes all sorts but hopefully we are all learning from each other on this forum. For instance although you don't talk about , you have been exposed regularly to the erection posts and Cialis posts and pump posts , giving you to be honest all the info you need.
Have you spoken to the PCUK nurses. They are very neutral but very knowledgable also and believe me they will talk about anything. Feel free to PM me if something is niggling you ok.
Yes it's a very lonely place. I have happy days /weeks , then periods of utter despair. It's like grieving for something you have lost. The best I will be has been this last 6 months and now I'm back on the rollercoaster again. Downhill from now on I think. Wine helps !
Chris
User
Bri
Yep. I felt it would improve as time thankfully marched on but no. The main imcreasing emotion of these past years is why should I be so lucky (avoiding further treatment) mixed with how long can my luck hold out. I've found over the years not to try to dimiss or ignore those feelings just let them come as they subdue quicker that way.
Ray
User
Thanks guys
Lyn John is lucky to have you on his side
Chris, got the pump (hate it) tried Cialis and got Viagra... its the emotional impact that the SE's can have then there is also the sword of Damocles feeling as Ray refers to. The support for the emotional impact is non existent (certainly in my neck of the woods)
Ray somehow reassured by your post
Bri
User
Yeh I get the sword hanging over you. I don't know whether it's worse for you , potentially cured , or for people like myself with permanent treatment ahead. But it's constant worry either way and most people don't understand. I've started at Wessex cancer. I have a massage and a counsellor. It seems to help. Keep strong
User
Bri
that is a post from your heart. You are absolutely right unless someone has walked in the same shoes and down the same path they cannot know what it feels like. Some folks try to empathise or understand and others just hide away from it all together. Others claim to understand but they do not.
As for talking openly on here or down the pub with your mates about the SEs of the treatments and of living with this disease, then that is something that is and always should be a personal choice. Some men can and do, some men can't and don't. Having said that when you do feel you need some support it should be there for you and clearly in your area it is not, well at least it is not immediately obvious. Maybe somebody in the same location can advise if they know differently.
I know no words that can relate to the emotional side of cancer dread but others on here like Ray do, so I hope you can get a little support on the emotional aspects from the forum by hearing about other people's coping strategies or indeed by just knowing that you are not unique and neither are you alone.
My very best wishes
xx
Mo
User
Bri
When I first started on my journey I attended a local support group. The guest speaker talked about a new approach to care at our hospital. They were going to have an holistic approach to the care of prostate patients and treat the whole person not just the cancer. Although our Urology staff are probably second to none the holistic bit never really happened, we answered questionnaires about feelings and our physical condition but there was no real interaction.
You amongst others on this site have been a great help to me,but I get the lonely place bit. I admire those who can put the cancer in the back of their mind, but every time I urinate I am reminded of my condition and how I miss a spontaneous love life. I said in a post the other day I feel in limbo waiting for results.
I tend not to speak to friends about my issues I talk to total strangers.
As you said in your initial post we are alot better off than many and for that I am grateful.
Take care.
Thanks Chris
User
Bri,
I admire you for opening this conversation and I cam imagine there are many men that find it difficult to talk about ED let alone the big C I think it changes you as a person and it sets you apart from the rest of the normal world .
Our worlds are forever changed we are all different People after those fateful words, I have often thought how hard it would be to have a possible cure and then live with the what ifs for the rest of your life.
I so agree with DM I for one never tell people how difficult life is I think mainly because I don't want others to feel bad or awkward, I don't want them to treat me differently so I smile and I joke it serves to protect others as well as myself.
I do think after care for cancer patients is terrible but most after care in this country is severely lacking , just thinking of soldiers returning from war . I have seen the advert about after care service for cancer patients but as usual that is only for private patients.
The sword hanging over your head is so true, this week for us has been a good week, next week who knows.
Heart felt and a very good post, I can't offer helpful solutions in fact the only thing I can say is ! Hang in there Bri Time is the best Healer !
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
It IS a lonely place.
There is a site, YANA.
It's not true. You are, we all are.
All the sympathy, all the empathy, all the pathy of whatever sort, matters not a jot.
When the light goes out at the end of my day, I am the one who will wake up knowing I have had cancer in me, have had cancer removed from me, and hoping that cancer will not visit me again.
And wondering if today will be the day that my sword will fall?
But, you have a choice. You can choose to feel sorry and worry and live in fear? Or you can choose to take the approach of make the most out of every minute of every day, and enjoy life to extremes every day, and laugh loudly and raucously, and drink to excess on occasion, more than you should maybe, so what, and party and become a tad hedonist wherever you may?
It took me a while to reach acceptance of my fate, and I do feel better. But every now and then IT, the dark thoughts, get to me and I sob, to excess probably and then drink to excess probably.
For some the road to acceptance is longer than for others, for some it may be never-ending. I hope your road is not the latter?
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sorry to hear your mental struggle Bri. You have had a difficult couple of years with other stuff too. No amount of advice about how I or others might cope will touch the side of your mental anguish, because it is yours and only you get inside that.
I could tell you that I put aside cancer after 10 years or so after diagnosis in 1982 but it did change me and the word long felt as if it belonged to me. When I got PCa with an incurable and thus ultimately terminal diagnosis I found acceptable after a mental battle easier because of my previous engagement. But you are forever changed, forever even if only in your own head, occupied by the cancer. We try loads of ways to divert ourselves and the gift of your grandchildren is, I am sure, one diversion you relish, but the reminders come back.
Stay strong and try and give voice to your fears I believe strongly it helps to name them, they then seem more manageable in the light of day.
User
Hi Bri
Your post hit the spot with me. I have been lucky with a successful op and three years of non detectable test results. incontinence is practically nil but ED is a problem. so i should be a happy man and most of the time I am. I have a full life which takes my mind off things.
Yes at times i think why did it happen to me and it could come back.I try to be optimistic but wary.I have days when i sit and cant believe it happened. But i say to myself i got through it and life is nearly back to normal.
I became very positive before the op and have continued to be so. I keep smiling for everyone and dont really discuss my true feelings. a few months after the op i got fed up being so strong. it was such an effort telling everyone how well i was. everyone was telling me how well i looked and i felt i had to keep up this face. But deep down i just wanted a few days off from being strong and wanted to just go to bed and curl up. i think of what i had to go through, especially the stress of the diagnosis and the op.
Countryboy has summed alot of my feelings so well. i was the one who had the cancer and had to live through it. none of my family or friends can really understand it. i dont talk to anyone about it too deeply. i have close friends and i can talk to them and they listen.
Since the op i have made new friends through various new interests and have a temporary winter job in a warehouse. I have not told anyone about my cancer. The reason being is that i want to be treated like everyone else and not a person who has had cancer. If i meet someone who has had this cancer or maybe another type then i will tell them. I have found in the past that if i tell someone about my cancer then they sometimes feel awkward or seem to treat me like someone who needs help. maybe i am wrong about this and i should be more open. but everyone has their own way of dealing with this.
I did find that it was a time when you really found out who your friends and family are. My friends were fantastic and some distant friends became even better friends with their actions. But some of my family disappointed me. Certain members of the family never contacted me in anyway. I did think they were maybe unsure of how to communicate with me but sadly i found out that they were too busy with their own lives. They were before my cancer and still are. 3 years on and when i meet them they never ask how my tests are or if i need more treatment. These are family who live within 2 miles of me! So i have alot of bitterness inside me which i keep inside but one day may come out. This post is the first time i have mentioned it. On the other hand the rest of the family were marvellous and still are .
4 weeks ago my wife was diagnosed with grad one breast cancer. she had an op yesterday and we get results next week to see if it has spread. in this situation i can understand her mental stress and its been horrible to see. i have been able to help and say the right things and do the right things. But i have still felt helpless as it is her suffering.
So Bri we do understand how you feel and its great that you can come on here and express your feelings. Thank goodness for this board which has been a tremendous help to us all. I hope you have more positive days than bad ones.
User
HI Bri I think those dark thoughts come to us all myself i do feel down at times , yet life goes on , I have all our animals to look after who give me unconditional love and affection no matter what.
I do have to give myself a telling off at times usually goes something like pull yourself together and you made your choice you where told the side effects so get a grip .
Hope your mood improves. all the best Andy
User
Thanks for the replies and comments guys. I have read your comments and done some reflecting. For me it is the feelings of isolation that descend now and then rather than dark periods. Having said that I have never looked or planned beyond 5 years since I was dx (that is a rolling 5 years).
DM I do fully understand that impact on partners also and your words are very true x
It's funny how life turns out. I recall being sat in a bar with my older brother. I was probably around 40. I was saying how I was quite looking forward to being 54 years old as my kids would be adults and hopefully settled or at least have clear directions with their lives paths. This would obviously free up time for Lesley and me to do things 🍾👌
As it turned out I celebrated my 54th birthday 4 weeks after my RP. My thoughts turned to will we actually enjoy the time we thought we had. Obviously we moved on.
Two years later we were running for our lives in Tunisia. The feeling of impending doom was much greater than the dx. Obviously we have moved on and feel grateful.
But if I am honest I can't work out if we are very unlucky or extremely lucky.
So whilst I still have the feelings of isolation and loneliness now and again. I am resigned to the fact that I probably won't have the opportunity to discuss my feelings with someone I feel comfortable with doing so. I have to deal with that.
On a positive note we do try our best to enjoy life and enjoy our holidays. We had an obvious wobble after Tunisia and we are now extremely vigilant (something I would recommend you all to be). But we are not going to let that stop us 😎
As Paul says having grandchildren has helped immensely.
Life will never be the same but then we all know that.
I do hope there is more investment in services to support people with the emotional impact and people start to get the after care they need.
Bri
User
Bri, being in social care is this not something you could reflect on in your supervision sessions?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I have to some degree Lyn. My manager is supportive but is also someone who puts his foot in it without realising eg when I got my dx I was at work. The nurse phoned to tell it was cancer. It just so happened that my manager was at my office that day.
So I asked him to come into a private part of the office and told him. His response was oh told tell xxxx (another manager) as her brother died of that. Cheers mate. But I know him and know he did not mean anything untoward. But I would not disclose my innermost concerns to him
Bri
User
Hhhhm - not ideal. I thought perhaps you would get external supervision. When you feel most isolated, try to remind yourself that we are all next to you even when we are far away.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Exactly Lyn
We are all here Bri. I think you've stepped over a big hurdle already this week. I know you meet with some members but we are mostly anonymous. Where else to get it out of your system?
User
Travel, drink, eat, live, love. The rest you have no control over. Easier said than done but the feeling of euphoria when you garner the strength to overcome fear is life enhancing. Yes, there will always be dark periods. Mine are many. Make plans for the now, for it is all we ever possess.
Bazza
User
Hi Guys,
OK, look I am sorry if my post was considered insensitive, so I have edited it.
:)
Dave
Edited by member 09 Oct 2016 at 21:00
| Reason: Not specified
User
Not at all, I fully understand where Chris is coming from
Bri
User
Never feel excluded Dave.
Whether you are c***d or not (and hopefully it isn't "not" !) then what you have been through to get to the C***d camp is very relevant to other members, especially new members.
You can still be here to offer advice and wisdom, so please don't desert us on the basis that perhaps you'll feel like a fraud. You aren't.
*****
We can't control the winds - but we can adjust our sails |
User
Thanks Dave, I' but I'm not sure why you would feel an intruder on this forum (if that's what you mean by 'your group'). You have had PCa and endured the treatment and side effects I refer to so you are a valid member.
However, I'm not sure about some of the content of your post as it is quite insensitive when considering the needs of others. I see you wrote it in the early hours. Would you feel obliged to edit it in the cold light of day. Obviously if you do not wish to that is your choice.
Thanks
Bri
Edited by member 09 Oct 2016 at 09:25
| Reason: Not specified
User
Bri, i was making a bit of a rude joke - i thought it might give you a smile.
Edited to say thank you to Dave K for editing :-)
Edited by member 09 Oct 2016 at 22:12
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Joked missed...sorry Lyn should have realised 😊
Bri
User
Dave K
You are not an intruder nobody who had been touched by this horrid disease is.... but
I am so shocked at your very insensitive comments to another member . You have frequently posted supportive and helpful advice for others so i just can't imagine what was going on in your head during the early hours of this morning when you wrote that post.
The
So please if you have a conscience and a good heart edit your post and please can the real Dave Kirkham return ?
Mo
Edited out of necessity and respect
Edited by member 09 Oct 2016 at 23:28
| Reason: Not specified
User
Believe me getting up six times a night to pee, urinating another 10 times during the day, going into retention a couple of times a day, sticking a catheter into your penis to perform ISD twice a day and another couple of times a day to release retention, urinating at a flow rate of 2mls / sec is not a joke.
Thanks Chris
User
Sorry Chris - you did make me smile because it reads like you are some kind of fetishist. I really didn't mean to offend you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
So, comments on a free and public forum are injudiciously judged inappropriate by some, and are then deleted. Not for the first time, eh?
How sad for you this time Dave Kirkham. How sad in the past for so many others.
What happened to the forum where those in need could express themselves as they needed to, when they needed to for support and comfort? Where the sad or miserable or drunk, not saying you were the latter Dave but I have been, could vent their anguish, sadness and despair and bare their soles freely? Without fear of judgement or censorship? It seems to have gone. Thank goodness it was there for me when I needed it. The forum and some folks here got me through my baddest of bad, my lowest of the low times.
Dave K, your post did seem to me to be very personal, open, deeply felt, maybe very freely spoken, maybe influenced (we have most of us been there), but as such may have been most heartfelt? If others choose to be sensitive, they may need a pair of curtains, or a small step on the footpath?
Sad times that you are admonished, not supported.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Unfair CB - his comments were directed to DM and failed to take into account how very ill her husband has been. That isn't censorship - that's reminding someone that not everyone has the same journey.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Guys,
I have edited my unfortunate choice of words, please accept my apologies if I have offended anyone.
These days I rarely drink, but occasionally I feel the need to rage against the world, and prostate cancer, and sometimes I get things wrong.
I know I am lucky, that my treatment appears to have worked, however I still suffer the side effects, and still get sad and angry at times.
No if's or but's, I accept I was insensitive, and I am sorry.
I value this forum, the advice of other sufferers, their wives and sweethearts have been a great help to me over the years, and we need to remember that there are ladies present, I forgot, my fault, I am sorry.
You know I spent my formative years at sea, and sometimes my choice of vocabulary is only suitable for the deck of a tramp steamer.
I will try and do better in future.
:)
Dave
User
Don't worry Dave,
I have been aboard many a Tramp Steamer and had a fair few daliences worth a Sallor.😄
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Respect Dave K, but keep posting mate.
Bri
User
Dave K
Thankyou so much. I'm glad you are back.
Nuff said
Xx
Mo
User
Isn't it a bit worrying that most of us never meet but we can tell when someone's had a couple more than usual!
Rage on DK - if I wasn't tee total I would probably have got lashed this weekend :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Guys,
Having apologised for crass comments, I feel I must also apologise for distracting you from the very good points Brian was making with this posting.
As he said '...So I amongst many other men are left feeling isolated. Yes we are in a much better place than so many others and I am thankful for that. But it comes at a price and I'm beginning to think the price is too high...'
The point I was going to make, or should have made, is that while I can satisfy my lady physically using techniques that don't require a fully fledged erection, I am not in a fit state to allow her to return the favour, yes we can have fun seeing how well the Viagra is working today, but deep down we know its not like it used to be.
Sex is about love, because my wife loves me, she doesn't merely want me to satisfy her, she also wants to satisfy me, it is important to her , and it doesn't matter what she does, or what I do, we both know that isn't going to happen, at least not like it used to.
That is why I sometimes get drunk and rage against the world, and I think that is what Brian is talking about when he asks if the price is too high.
A nurse once told me a story about an old man she looked after, he was over 100 and she congratulated him on his good luck living to that age. He responded that it wasn't good luck, he saw it as a curse, his wife had died, his son had died, his friends had died, he was cursed to be kept alive, sad and lonely in a hospital bed, looked after by strangers, when everyone he had shared his life with had gone.
I cherish the love of my wife, without it life would be much poorer, I do what I can feed that love, and I do my best sexually, we have our moments. But at times I think we are just kidding ourselves and that is how PCa hurts, even those of us lucky enough to be 'cured' carry the scars.
Its at times like this that I am tempted to reach for the bottle.
:)
Dave
User
Physically, John no longer has ED and we have been able to regain an almost normal sex life but as you have described so well, we both know that it will never be the same as it was or should be. You have no doubt read some of my longer missives on this topic - I don't rage any more, I just feel sad.
I think J would recognise almost all of your sentiments (and Bri's) and for a good few years he regretted having the treatment, saying he would have preferred to only live 5 years but be normal. However, I don't think he really believes that any more - life moves on, there have been challenges and tragedy within the family and he has been badly needed, and in the last week we have lost two friends tragically which tends to make you grateful for whatever you have, I think.
You drink, I will stick with the cigarettes!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Well done Dave , I knew it might have been an over-emotional moment. I'm in a bit of a mess too but outwardly ok. You've always been a good support for me. I keep my ranting internal mostly ,being an ex matelot like yourself. And at this rate the alcohol will have me long before the cancer I reckon. I didn't want the op , and yes I do regret it still , but maybe on slightly different grounds than others. The sex side of things is tickedy-boo at the moment but won't be long before I'm on HT again I suspect.
Take care
User
Oh my Lord, I see I've missed another go at me. I seriously have no idea what this is all about but it's goodbye from me.
User
If anyone is thinking to post comments to DM or to send her a private message about the above exchange, please don't. She is okay but close to breaking point and feels that she just needs to concentrate on her health and looking after John so she is going to have a break from the forum for a while. Some of us are in touch with her on facebook and will be keeping an eye on her, or doing anything we can to help.
Edited by member 10 Oct 2016 at 22:00
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberIsn't it a bit worrying that most of us never meet but we can tell when someone's had a couple more than usual!
Rage on DK - if I wasn't tee total I would probably have got lashed this weekend :-)
No, it's reassuring. Just as some can sense when someone has posted when they have been a bit tetchy. ;-)
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Bri,
I just thought that i,d respond to your post, i dont often post on here although i observe quite often, its good to know other people are experiencing the same things as you.. well not good .. but makes you feel less alone if you understand what i mean..
Also you were one of the ones who respnded to my first post, so thank you for that ..
i think my stats are on here but i was diagnosed pca T2 which changed to T3 after histology in jul 15, had robotic prostactomy aug 15 ..
Now so far my psa results have been great 00.5 00,6 , 00.7 , 00.6 .. i see all the posts on here and think how lucky i am as far as that goes, as for the in continence ,, well maybe i drew the short straw as 14 months in i,m still wearing pads, although for the first 12 months i was wearing the full wrap round jobby, but now im down to tena 2 .. which of course is a great improvement ..
But alas 12 months on i hit a wall as they say... felt really down , couldnt sleep, was having all kinds of dreams etc.. my gp said it was some kind of PTSD ... so this is a warning to people reading this that it can happen.. all my friends said "i cant believe how youre dealing with this" and i was... and then WHAM... so i spose im saying were all human and sometimes our brain puts "things" away to deal with at a later date.. i,m on anti depreesant/anxiety meds at the mo and dont like that.. but i also dont like not being me either..
My personal situation is... single, no girlfriend, only one brother who lives miles away and doesnt contact very much, but ive always been a bit of a loner and havent realised how important having a close family and circle of friends is... so if you have this , cherish it ....
So at the mo the ED is not a problem to me as ive nobody to share an erection with :)
So this post is in response to Bri who i can tell from his many supportive posts to other people on here is a nice fella :
Keep the the faith old cock and god bless ya :)
User
What a lovely post Keef - you sound like a great fellow as well
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I have a mental image of the most frequent posters. As in life quite different people yet this cancer lonely issue seems to affect most of all types. For instance I see Bri as the quite socal guy both in work and play set against the other end of put me on an island and I'll be just fine (anti -social bugger :-) . ) In my own case I put the lonely issue away from here as down to 'my cancer my problem'. Do you more socal guys see it that way or not?
Ray
User
I was only thinking about this very subject yesterday. I've taken a sabbatical from the site for the past couple of months now partly to see how I'd cope without it. And I've coped very well but also know that it's only having been in contact with others going through this, that I have properly felt 'at home'. I have though maintained contact with one of the members of this site during this period, so in reality I've not really been away from needing support, advice and friendship, although we've never met. It has been reciprocal.
The loneliness was very much a huge part of my life, especially post RT life but is less so now. I am reasonably social, have many friends and am out and about meeting people and pursuing my hobbies and interests. I have a great family and a wife who I think I'm in love with more than ever. My GP has been more than supportive and has given me great advice and guidance too. She's a firm believer in this site.
But as to feeling alone? Well since I was given the good news of having a totally undectable score at the end of July, I just felt such a huge surge of relief and a lifting of spirits that I never knew existed. It seemed to have taken ages to have achieved undectable status (well over a year post RT) even though my Onco said I was still at risk of recurrence. The 'being alone' feeling has all but abated now I'm pleased to say.
It's all starting to become something which once happened to me, even though I'm having to deal with ongoing issues of radiation proctitis. I see that as a different situation to deal with and am under the Gastroenterology department for it.
I will still occasionally talk about Pca with others but far less so now, ,and when I do I no longer have that feeling of 'trauma' by remembering what I'd been through. It used to haunt me.
I'm helping a good friend who has recurrent Pca having had a RP just as I was diagnosed in 2014. He was a great help to me then and still is. He now faces RT next month (33 fractions worth) but also has a wife who has terminal cancer. What they are really going through I dread to think.
Many people have laughed along with me when I've told stories of what I've been through. The various procedures and the enormous problems I incurred when I embarked on Cialis with s/e and at the ED clinic. It helped me loads though and I think I gained respect for my openness from those who were receptive to my tales. It was therapy for me too.
I know that I'll still have good and bad days. The next Onco visit is in January and the usual dread of attendance will be with me then. The loneliness may return from time to time but at least for now I feel free from it.
Thanks for bringing this conversation to the forum - it's been a good one and even writing this has helped me put much into perspective.
Best wishes to all.
John
User
To bastardise the title of the Sillitoe classic, loneliness is a long-distance runner.
You may have the largest, most close-knit family in the world, a great support network of friends and colleagues, the best boss in the world - each man's cancer, whilst impacting others in non physical ways, is very much a personal battle of both of the physical and the psychological going on inside the man. To that end, it is a uniquely individual battle where loneliness, at some point, despite the support, is de rigueur for the journey. It can hit at any time, during a sentence uttered by a medical professional in the cream-walled comfort of a consulting room, the door shutting whilst you lay flat on the radiotherapy table or passed through the giant Polo mint hole of the CT scanner. It can be whilst you lay prone on a flat bed bone scanner floating one inch above your body or during a simple blood test.
Loneliness has no boundaries. It can strike just like the cancer, out of the blue - around a dinner table full of friends and family, when doing the dishes, watching Coronation Street, seeing an advert for funeral advice plans or cancer research comes on the telly. Suddenly, the cacophony of background sound fades into kind of white noise as the loneliness hits over you in waves, reinforcing the message you know so well that you have cancer - and that despite the love that surrounds you, you are alone and that this is not happening to anyone else but you.
It can strike during a dog walk in the park, taking idle or happy thoughts from your mind in a thrice; in the supermarket as you pass a woman wearing a bandana, or simply driving along in the car listening to Radio 2 (if that is your predilection). Yes, loneliness is a long-distance runner with the stamina and capacity to inflict its pain at all times, so randomly that in itself, it becomes just as much an enemy as the cancer itself.
So Brian is right, isolation is one of the unique gifts of cancer despite the love that surrounds you. No-one but those in the same position could ever understand it. However, it is the love, the kindness, the support of family, of loved ones and of the dedicated medical professionals which does, in some way, mitigate some of its effects. We know deep down that although we are alone, our cries are heard, our deepest despairs are sympathised with and our pain will be hopefully eased.
Loneliness is a long-distance runner, but in the final analysis, we as the individual men going through this disease, whatever stage we may be at, must make sure we are wearing the best shoes to keep pace with it. Then and only then can we begin to chip away at the psychological demons that domicile our world.
Bazza
User
I have read this thread and watched it unfold. I am in the incurable camp and as some have inferred , I am not cursed with a long future life without sex, in fact my initial prognosis indicated I could have departed this planet in the next few weeks, thankfully if that does happen it won't be down to PC.
I will never really be able to see the discussion emotionally from the probably cured side of things as they will never be able to see things (hopefully) from the incurable side however what my own mental experience and sadness on occasions has given me is the clarity of mind that life is for living.
To quote the appropriately great Forest Gump, " life is a box of chocolates, you just never know what one you are gonna get", I have somehow found the personal mental strength to push my physical strength to never give up on what is important. So I can't get an erection , I won't be here for as long as I had previously expected, I feel nauseous most of the time, I get the flushes, the no sleep etc BUT I also get the daily choice to mope or live, to sit in a morose comfort zone or push my boundaries as much as and beyond what I dare.
I do not infer in any way or mean to offend in any way those who are stuck in a downward spiral to say it is not real or disabilitating in life, I accept PTSD is very real and hard/impossible to cope with but I believe ( perhaps naively) that everyone has a choice every morning, you can choose to smile or scowl at the world you can do something good ( for you or others) or you can do nothing. The hard bit and believe me despite my preaching here I was there when I started chemo amongst other times, is making the first mental choice of the day.
I love my life, I love my family, I love running ( really I hear you say!) , I type this lying in the bath after a 15 mile hilly run with friends, I didn't sleep last night and got up at 5-15 but did it matter, no.
So I guess I am saying , for those worrying about things they can't change try so hard to do things about what you can change, every day is a gift. When I was diagnosed I vowed that from that day forward I must not regret any day as on my death bed I can not look back with regrets as that would have been a waste of a day. So far I have none (although I may regret this post if anyone misunderstands me negatively lol).
Have a great day, I know I will.
Kevla
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Guys,
I know as someone with one foot in the potentially curable camp, that many would say we cannot possibly know what it is like to be in the incurable camp, and we should perhaps shut up? But I have spent the last 9 years sat on the fence between the two camps, wobbling, never quite sure which side of that fence I will ultimately fall.
Like everyone else, upon diagnosis I went through all of the life's a b****, why me, what did I do to deserve this, God are you there, are you listening God?
Then when treatment seems to be working, and other, better men than me, younger men, fitter men, more virtuous men, pass through St Peter's gate, I go through all of the emotions again, you know, thank you God, but what did I do to deserve this, why was I spared? Almost a feeling of guilt.
But then again, what exactly is a cure? I have heard more than one doctor describe it as keeping you alive long enough to die of something else. So I won't actually know whether I was cured until I am dead?
So however we look at it, we are all coming to the end of this marvelous and stupid game called life, not long now, all we can do is fill every day with fun, do what we have always wanted to do, be nice to our loved ones, and when we feel sad and lonely, just reflect on the fact that we need to have bad days to make the good days great!
:)
Dave