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It can be a lonely place

User
Posted 10 Oct 2016 at 20:09

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 21:00  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2016 at 21:04

Originally Posted by: Online Community Member


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 :-)



No, it's reassuring.  Just as some can sense when someone has posted when they have been a bit tetchy.  ;-)


dave


 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 10 Oct 2016 at 21:08

:-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2016 at 22:16

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
Posted 11 Oct 2016 at 00:21

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
Posted 11 Oct 2016 at 08:33

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
Posted 15 Oct 2016 at 10:52
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
Posted 15 Oct 2016 at 11:22
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
Posted 15 Oct 2016 at 11:28

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
Posted 15 Oct 2016 at 12:46

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
Posted 15 Oct 2016 at 13:03
Kev,

Yes you're right, I don't know what it's like to be in the incurable camp. But I have had doubts about whether my treatment plan was working for me sometimes though and my Onco told me that because of G5 it's likely that I might face recurrence.

The important thing for me is that having been dx'd I have taken the opportunity of looking at life again and trying to ensure I make the best of it. If there any benefits from having cancer then for me that is top. I have had conversations with my wife about all sorts of things and we've cleared the air over many unsaid issues. That has helped us both enormously. I value each day as best I can.

I saw our friend with incurable cancer 2 weeks ago. She said that I was the only one she knew that she could talk openly too as I had cancer. None of her other close friends have been inflicted by this disease. She worries about her husband and his chances of survival from recurrent Pca. She's a GP and is well versed in cancer matters but finds it very strange seeing it from the personal and not professional side.
She worries about her daughter's in their mid twenties after she/they go. She knew I understood what she was talking about. I told her that we had already offered support to her family and she thanked me for that, saying that already a great weight had lifted from her.
We spoke about the feeling of isolation and how for her it's even worse because of her husbands position. They don't want to upset each other and live almost in a bubble, treading around each other's emotions. They are trying to be very positive and doing as much together as possible whilst they can.
She thinks too that this site is great and encouraged her Pca patients to join but her husband has refused to. There's nothing like this for women with her cancer she said and that she's envious of what we have here. She just feels incredibly lonely and scared. She has no one to turn to regarding her condition as we can online here.

One person who I see each week whilst at my one day work I started this year has Pca too . When he found out about me we discussed in private where we are. He's just come off HT having had RT. He looked at me and said "I bet you've been to places you never knew existed- I know I have ". A bond has formed between us, just a nod or a knowing look if conversation with others there turns to medical matters. And it helps.

John
User
Posted 15 Oct 2016 at 14:51

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.

User
Posted 15 Oct 2016 at 19:34
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 19:36  | Reason: Not specified

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