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I’ve made a pretty radical decision

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User
Posted 18 Jun 2020 at 20:35

For those who don’t know me. Brief history


RP and Adjuvent RT in 2013


PSA steadily dropped for 4.5 years. But started rising in 2018. Last test at 0.14. Yep I can hear the usual “it’s only small numbers”...”you always worry”


But I was informed rather callously that I had a recurrence and whilst it was now incureable they could treat it for as long as the treatments worked. But they would stop working
Had the phone call today to arrange to go for my PSA blood test. So arranged to go to the surgery next Tuesday to give blood. But, and here’s the thing, I’m cancelling first thing tomorrow.  My life is pretty sxxt at the moment. I have two adult children who basically are causing us more stress now then ever. Not seen my daughter in almost two years. Oh tell a lie we were allowed to see her over the fence for 10 minutes as we wanted to drop stuff off for the grandkids. Not met two of our grandkids yet. Think she’s in a controlling relationship but can’t get near. My god we’ve tried. Only time she initiated contact is if she wants money. It’s a laptop this week. Not seen our grandkids for two years 😢
My son has problems that we are having to support both emotionally and financially   to the degree he has just moved in with us on a temporary basis. I recently retired from work. That was a mistake as I don’t think I realised what a distraction it was. 


I’m living life month to month waiting to see if the PSA  has increased  Well it’s time to come off that f’in treadmill. Yes I present as a happy go lucky chap. Posting funny vids on FB etc. But you know what life is pretty tiring and stressful at the moment. So I need to kick the cancer into touch for now. Theres only way to do that and it’s to remove myself from system. No more giving blood, no more up their own arxxes oncologists, no toxic treatments. No more sitting in a waiting room wondering what you are going to be told  


I will leave this forum once I know my post is posted as this sadly is part of the system


Bye all and good luck for the future 

User
Posted 18 Jun 2020 at 23:42

Hope I catch you before you go. Good luck however things turn out. 

Edited by member 20 Jun 2020 at 10:34  | Reason: Not specified

Dave

User
Posted 19 Jun 2020 at 00:30
Wow! I am sorry for all the pain and heartache you & L have. The only helpful thing I can think of is that LAs are going to be crying out for agency staff with your skills and expertise as lock down ends and we start picking up all the pieces.

Hopeful that you will be staying on FB?

Lots of love & positive vibes to you both, Bri xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jun 2020 at 03:35

Good luck brother

User
Posted 19 Jun 2020 at 07:09

Bri


I think the current covid situation it giving us too much spare time to over think things. I belong to a couple of catheter forums and think it is time to kick them into touch. 


 Take care.


Thanks Chris and Dawn

User
Posted 19 Jun 2020 at 08:47
All the best for the future Bri

Maybe one day you'll be back

Cheers
Bill
User
Posted 19 Jun 2020 at 09:53

Sorry you are having such a siht time. It is a radical decision you’ve made but one I totally understand.


Hope things improve for you both over the next while.

Ido4

User
Posted 19 Jun 2020 at 10:10
Hi Bri , you’ve joined my club , but probably have ages so concentrate on the family. Sorry to hear all that is going on. I’ve not had contact with my only brother for 14 yrs. He’s never met my son. It’s hard.
I’ve thought of leaving the forum many times. I’m an oldy now on the downhill bit but still help if I can.
You take care x
User
Posted 19 Jun 2020 at 11:50
Good luck in the future - it is hard when you have family problems to deal with. You can support them but I am sorry that you do not see your grandchildren. When they are old enough they can make their own choices and you can still be there in the background.
~I hope you will feel well again and stress free - you are important and need to take care of yourself too. Stay safe.
User
Posted 19 Jun 2020 at 14:00

I understand your decision and wish you all the best. I sometimes think that if my husband's PC returns whether he should get back on the treatment merry go round. It will be his decision of course and I will support his decision. I wouldn't want him to put up with the side effects just to please me.


You know that this forum will always be here if you ever want it. In the meantime enjoy yourself as much as possible and have fun.


Ann

User
Posted 19 Jun 2020 at 14:19
Sorry to read this but can understand presssures facing you. You have made a considerable contribution to this forum which I am sure has been appreciated. Do feel you can look in and comment at any time as some irregular posters do. Meanwhile, I wish you well and hope you will read the replies to your post.
Barry
User
Posted 19 Jun 2020 at 16:02

It's great how people come out and say how much they'll miss you.   


Perhaps people should do it more often. 


It gave me another thought, which might be of no use I know.    Have you told all your family that you're ending treatment?  It might get them to come out.  Clive James spent 10 years telling people he was about to die and it seemed to work for him.


Ending treatment, even if temporary, doesn't seem too great a plan.  You never know if you'll have longer than you think.   Saying you're ending treatment but not carrying it out is fair enough though, if you have excuses ready.


All this Covid stuff has got some people down.


All the best, Peter

User
Posted 19 Jun 2020 at 16:44
Bri isn't having treatment yet, he is still in that 'ok the PSA has gone over 0.1 so you may need further treatment in future' stage. Deciding not to have this PSA test may be enough to just get some emotional stability in time for later in the year when the next test would be due but in all reality, Bri will (well, might not now but would have had to subject himself) probably have a lot of PSA tests before the onco even suggests active treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jun 2020 at 02:50

Bri, 


I hope you find some peace by doing this.  


Hopefully, when life returns to normal and you can really start living again (eg. watching good rugby games, which I know you enjoy so much), and being able to do all the things and go to places you'd always planned to go in your retirement, life may not seem too bad.


It's true that lockdown has caused us all to think about things too much and it's so easy to imagine the worst is going to happen all the time.  When this is all over, it will be easier than it is now. 


Try not to think about the possibility that your cancer has come back.  If it has, then you can deal with that when you need to, don't let it ruin what's happening today. 


I already know the way my cancer journey is going. It's incurable and I can't really do anything about it.  In a strange way, I've accepted what is going to happen so I never really worry about it.  Since I started to think that way, I feel a lot happier than I once was.  I no longer take Sertraline (my "happy" pills) and haven't missed them.  


I think I have "accepted" the way things are going to go for me.  I think it was an important step for me. 


I'm sorry you've decided to leave this site, you will be missed but can always come back when you feel the time is right. 


Please have your PSA checked when you feel able, you don't want to miss the opportunity of a "cure".  


Take care and thanks for all the help and support you have given, not only to me but everyone on this site. 


Steve 


 


 

User
Posted 20 Jun 2020 at 09:50

Great post Steve. Sums it all up really. 

Ido4

User
Posted 20 Jun 2020 at 12:37

Hi Bri 


i don't know if you will read this. We started this journey at the same time nearly eight years ago and I still remember your post when you were sat in the car mulling over the best path to take. As oldies we tend to leave the commenting to the newbies now but comment if we feel we can help. Sometimes we need the outlet this forum allows, when we can't talk to our loved ones and find talking to someone who "gets it" helps in some way. I understand the wish to move away from the constant reminder of tests, consultations, and the fear of possible treatments and hope you can achieve your goal and you mind is at rest. I hope you sort your family problems soon and can enjoy your retirement but you will need to replace the distraction of work with something more pleasurable to keep that mind focused on what matters. Stay safe mate we will miss you, but if you need that outlet we are here for you (fingers crossed).


All the best


Roy

User
Posted 21 Jun 2020 at 21:39
Bri
I know how you feel
I have the same family issues and PSA problems
Dont retire from work , do try early Chemo six sessions

Love and Best wishs Barry
 
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