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It’s a lonely place

User
Posted 10 Mar 2019 at 21:36

LQuick update. RP and ART in 2013.  PSA dropped over the next five years to a low of <0.01. Nov 18 PSA of 0.08. Feb PSA 0.12. Told i have recurrence. Will monitor. No further treatment yet.


The reason for my post is that I feel incredibly lonely regarding my dx. Dont get me wrong my wife is a piller of support. But I dont mention to people face to face what is happening, I strangely feel embarrased to tell people even when they ask how I am. I have lots of thoughts going around my head eg about my family,  further treatment at what that may mean etc. 


i see those adverts on tv for McMillan of the bloke isolated in an antartic type landscape or underwater and it so resonates with how it really feels. I think im just posting this as it is quite cathartic.

User
Posted 11 Mar 2019 at 00:28

Brian


i will reply with help but its 1-27am here in France and I have chemo in morning" 


dont fret. i will try to help.


bazza

User
Posted 11 Mar 2019 at 06:25
I feel like a rabbit trapped in the headlights at the moment Bri. Everything I have worked on regards recovery over the last 4 yrs about to be taken away again. A mere two months before yet another scan which will decide on Chemo and HT. And it’s looking like tissue progression not bone which ain’t good. Outwardly I’m that lovely friendly bloke. Inwardly my world is collapsing. A very lonely place.
User
Posted 11 Mar 2019 at 08:41
Brian, I think that only those who've gone through this can understand what you're going through. That's what's so good about this community - there are people here who've "been there". I've found being here incredibly supportive since my diagnosis.

All the best,

Chris
User
Posted 11 Mar 2019 at 10:42
Thanks everyone. I agree this forum is and has always been very supportive. I do find when I meet someone who has or had any type of cancer that there is an immediate connection as they ‘know’ and understand

Gilly thank you. I know my wife hides some of her feelings from me and will also have lonely periods. I really appreciate your words x

Chris J- try and stay strong. You’ve done so well. Everything crossed that the scans are good

Barry- hope the Chemo is not too unbearable. Thanks for your ongoing support

Chris- you are absolutely right

Bri

User
Posted 11 Mar 2019 at 14:44

Hi Bri, Your post really resonates. I hope things stay as stable as possible and that further treatment down the line will knock it on the head for a long time. We’re all here to support each other. 


Ian

Ido4

User
Posted 11 Mar 2019 at 16:01

Sorry to hear about your ongoing journey Brian. Hopefully as others have said future treatment will allow you many many years of good quality life. It must have been so sickening to go 5 years with good PSA results and then to find it increasing. This b****y disease is so cruel.


Although my husband's PSA is still undetectable we are under no illusions it may not stay that way. Sometimes when I read folks experiences on here I feel it's a matter of not if but when.


On the surface we are getting on with it as a couple and only talk about it occasionally with friends and family however we feel our life has been blighted and we are somehow different to other couples now. Not a good place to be. The Urologist even told my husband he is in remission at the last appointment ( probably to make us feel good) when we know it's far too early to believe that. Maybe if we're both still around in 15 years I might actually start believing. 


I suppose we all have to try our best to make hay whilst the sun shines in the meantime.


Best Wishes


Ann


 

User
Posted 11 Mar 2019 at 17:44
Ditto the above Brian

always here for you, and others.

kr

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
Posted 11 Mar 2019 at 19:45

Hiya Bri, I purposely only told my immediate family and a couple of friends that I have PCa and have  continued with that strategy. I did this because I did'nt want to be updating people with my progress every time I saw them in Tesco. Strangely though, I have discussed it openly with complete strangers after they told me of their own PCa diagnosis,and I found that cathartic. One bloke I met whilst dog walking told me how he was diagnosed soon after retiring, same as me, and before we knew it we'd been stood ther nearly an hour. Like you say, I felt that chap knows how I feel. You've just found out you've got a recurrence mate and I know how that made me feel when I had one, infact it was worse than the initial diagnosis. Even with the support of our loved ones it can still be a lonley place at times and you seem to be feeling that now mate. Try and regain some equalibrium, I'm sure you will.Tek care spadge.


Paul.


 


 


 


 


 

User
Posted 11 Mar 2019 at 19:54
I am really struggling with this Bri as you are in almost the same situation John was in a couple of years ago and yet have taken a very different view, as have the two oncologists. I saw that you had announced your recurrence on FB and also that you had informed colleagues at work, whereas John just waited for the PSA to fall back below 0.1. I don't really understand why your onco has said that you have a recurrence at this stage - it seems rather early and unnecessarily distressing for you.

Anyway, although John and I have a different take on the situation we wanted to let you know that we are thinking about you.

Lots of love xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Mar 2019 at 20:21

You don’t have to tell everyone and their mother about your ongoing cancer. Although most people mean very well, there is a morbid curiosity of those without cancer to discover what it must be like to have it, asking those with the disease how they are and what does it feel like - this is quite normal human behaviour as the word cancer still is such a big taboo. Remember, those who ask genuinely mean well.


So, tell who you want, the level of information you want. Hold onto that power as you alone possess it. Do not feel too lonely about your diagnosis as you have chosen to share that with those you love and trust the most. In time, you may wish to tell others, you may not - but YOU have the CONTROL over that. 


Part of the reason for not telling others I found was that I somehow felt shameful for being so weak that my body had succumbed to this disease. I sometimes still do. However, this has diminished with the passage of time as I have come to realise that when I was a boy, cancer affected 1 in 5, it was 1 in 3 and now it is a ridiculous 1 in 2 - that is 50% of us will get cancer at one stage in our lives. By the time my future grandchildren will become adults, heaven forfend this figure reaches 1 in 1.


Cancer was always a curse. It still is, but so many people now affected by it are empowered to varying degrees by the openness with which it is talked about, “de-shamed,” debugged and demystified. It is also so much more openly talked about these days in disease specific forums and helpful organisations and charities to assist sufferers. These do not do it for everyone, but they are invaluable resources to others - places where you can post without shame and tell your innermost feelings to. It offers cathartic release for those otherwise trapped by the potency and psychological power of the disease.


Brian, you are, like all of those who suffer and post in here, empowered. You may not fully realise it but you are. You WILL adapt to deal with your disease better in time. You may not ever become the finished article (because I don’t think anyone asks to get cancer nor become a master of its psychological effects) but you will adapt - and as you do, you will be less affected by those relentless cancer adverts of TV which mean well but do so much harm to the minds of those like us who have to watch them. You will feel less embarrassed about sharing your physical vulnerabiliy with others. You will become a stronger person for it.


Go into each day with purpose. You control your destiny. The cancer may be part of your future but you and you alone will always define who you are.


I wish you strength brother.


Bazza

User
Posted 11 Mar 2019 at 22:50

Bri


We are both hopefully still a long way off more treatment. I do not dwell on the what ifs, I can't do anything about it so I get on with other things. When people who know my condition ask how I am, I reply "still here still moaning " or  "absolutely fine".Stay positive.


Thanks Chris


 


 

User
Posted 11 Mar 2019 at 22:59

Thanks all, you all offer great words of support  


Lyn I questioned the registrar and actually said i thought it would have to reach 0.2 but she pretty much dismissed that. Regarding FB   as you know I post on there every now andagain as a forum to spread the word about getting tested. This has actually helped two of my FB friends to get an early dx so it works. Some of my staff know i get tested every 6 months so always ask after me. Following my last appt i decided to tell them what had been said as it has helped me make some decisions. 


On a day to day basis i dont really speak to anyone about my thoughts about it all. I would find that quite difficult and awkward. So my thoughts are my thoughts. Likewise J's are his and we are all different. All I know is that I certainly find it a lonely place. But as always I welcome your words and support 👍


 

User
Posted 11 Mar 2019 at 23:07
Love you loads - especially the rugby photos.

So decisions that needed making .... are you going to take the plunge and ask for early retirement?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Mar 2019 at 23:08

Ah Bri


it is a lonely place, mainly because we are all different and react differentlyi always think of my dear friend Mo, Mick was diagnosed one June and gone the next. why? My John has survived with a much higher gleason score for morw than eight years, why? who knows? It all seems so random, and it is. Best thing to do is ignore it all and carry on regardless. That’s my consdered view.


big hugs


Devonmaid xxx

User
Posted 11 Mar 2019 at 23:43

Originally Posted by: Online Community Member
Love you loads - especially the rugby photos.

So decisions that needed making .... are you going to take the plunge and ask for early retirement?


Thanks Lyn..regarding work I cant give it the committment it needs so I have to make a decision ☹️

User
Posted 13 Mar 2019 at 21:33

Hi Brian
I am now 70 , my 71st  year see my profile , still do a bit of work , all my Clients are women who have lost their partner , they are my outlet
they always ask , I tell them everything , my worries ,my problems , I tell them more than I tell my wife tomorrow its results and to be honest I have been getting loads of lower back pain .


 


Stay strong
Barry

Edited by member 13 Mar 2019 at 21:35  | Reason: Not specified

User
Posted 14 Mar 2019 at 11:13

Thanks Barry. I hope your results are good today


Bri 

User
Posted 14 Mar 2019 at 18:42

Hi Bri
Yes still stable o.o4


Next appointment 3 months they wanted 6 months
So now I don't worry for about 8 weeks


She thinks lower back pain could be me doing squats for exercise , I stopped hem about a week ago , 


we will see

Best wishs 
Barrry

User
Posted 14 Mar 2019 at 20:56
Hi Brian,

you are never alone, although, even surrounded by known and unknown friends, it may feel that way.

You, and others will always have support.

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.

 
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