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Ever Decreasing Circles part three

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User
Posted 31 Oct 2018 at 15:31
Thanks Ian it’s the ancillary problems which make some days (and most nights) difficult but we keep going.
User
Posted 10 Nov 2018 at 20:46

I haven't been on the site regularly for some time but it's good to see one or two familiar posts from fellow urological explorers; even explainers!

Now well into my 15th year on HRT (prostap) and turned 83, I don't expect to be bouncing around but I still enjoy green bowling indoor or out between hot flush type moments. PSA was 8.8 in May; doubled in two years.  Currently concerned for my 50 year old son who is due to have a prostate biopsy next week, following a recent MRI scan found a suspect area. As I was adopted and have no knowledge of my father or his medical history it remains a blank slate. Often wonder if a DNA check would help. 

Not had chance to look at other threads but I don't feel my prostate experience has equipped me to offer advice or detailed events when most new members are looking for some positive encouragement midst their fears and uncertainty. I would like to say that the post code lottery attached to many other health issues applies equally to prostate matters. I think that is evident reading the various postings on every aspect of this infernal problem.

Thank you to those whose words of encouragement have helped me on this site and those who continue not realising the good they convey.

Edited by member 10 Nov 2018 at 21:06  | Reason: Not specified

User
Posted 10 Nov 2018 at 23:38

Originally Posted by: Online Community Member

Now well into my 15th year on HRT (prostap) and turned 83, I don't expect to be bouncing around but I still enjoy green bowling indoor or out between hot flush type moments. PSA was 8.8 in May; doubled in two years. 

Not had chance to look at other threads but I don't feel my prostate experience has equipped me to offer advice or detailed events when most new members are looking for some positive encouragement midst their fears and uncertainty.

 

As a new member on here I would disagree with your last paragraph! The fact that you have been on HT for 15 years and are still enjoying bowling is certainly 'positive encouragement' for most people who are just starting out on their own journey. Everyone needs some hope that maybe treatment may last as long and work as well for them. It is far too easy to give in to the fears and uncertainty that surround this condition and be dragged down by it.

 

User
Posted 27 Nov 2018 at 13:28
Latest check up completed. Same onco who has given me a zometa holiday. This will be interesting as I believe some of my side effects started/worsened in 10 months since I started it. So, No infusion today and next appointment 8 weeks so at least 2 months off, review in late Jan. PSA creeping up to 29 but she regards me as stable so more enzalutimide and 8 weeks before next appointment. Kidney function not so good but urologist happy for now. So still night time issues and lost weight again but bring on Xmas and be interesting if I feel better. Always feel better in the week before infusion which suggests it has an impact but we shall see. Pleased with outcome though.
User
Posted 27 Nov 2018 at 15:15
Some good things in there like staying on the Enzalutamide. How are you feeling during the day?

Glad you’re pleased with outcome. You never know how an appointment will go, I’ve been blindsided a few times.

Ian

Ido4

User
Posted 27 Nov 2018 at 18:50
Some days I feel very tired and queasy and other days less so. I can start a day ok and then not feel good as the day progresses. I suppose it’s just hard to predict which makes planning difficult. Food is a problem as have become very uncertain over what I eat and when. But hey I am still going seven years come January when offered two, so I can’t grumble.
User
Posted 23 Jun 2019 at 22:42
Goodbye my lovely friend - I will miss you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jun 2019 at 22:53

Paul's last blog - as he says at the start, not for the faint-hearted though.

https://yorkhull.wordpress.com/2019/04/20/quality-of-life-matters/?fbclid=IwAR12mJ3jlTxdJt0_NLC_ya01m42lPQ9KNDEGSmckYVOkx4LY8AX2vaxChgc

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jun 2019 at 23:00

Good night my dear friend , your circles have come to an end . 

BFN XXX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jun 2019 at 07:51

Fly high Paul xx

 

User
Posted 24 Jun 2019 at 08:47

What a thoughtful blog as usual. Will miss your positivity in the face of the challenges you faced.

 

Ido4

User
Posted 24 Jun 2019 at 12:56

Dear Sir,

My Father was diagnosed with prostate cancer march 2018 with psa level 645 cancer spread in spine and suffered from lot of pain but able to walk after 10 shots of radiation psa level down to 151 and pain was goan. After 6 round of chemo psa level down to 0.02 after scan (26 th august 2018 )there was no evidence of cancer cells . we all are very happy but he loose his mobility but now he gain his mobility little bit my father is diabetic patient also there is rise in diabetic also but now controlled through insulin recently he have done with orchiectomy operation . but now there is pain in shoulder especially in night time . In morning he feel active in sleeping time there is lot of pain we afraid can you tell why this pain is occured .

Regards,

 

Bose

 

 

User
Posted 24 Jun 2019 at 13:06

Bose

You just posted one of your never ending repeat queries in the thread of a member who had just passed.

Please delete your post here and move it to your own thread which is where you should be posting all your queries. I will then delete this one.

Edited by member 24 Jun 2019 at 13:07  | Reason: Not specified

User
Posted 24 Jun 2019 at 13:09
Saddened to hear the loss of another brave fighter
User
Posted 24 Jun 2019 at 13:35

Saddened to hear of the loss of Paul.

Rip

User
Posted 24 Jun 2019 at 13:45
I was shocked to see the news about Paul on FB. We had recently visited him at home and he was in good spirits and, as he said in his blog, he had started photography again. He stopped our conversation a few times to pick up his camera to capture a bird in his garden.

I have had lots of conversations with Paul, both virtual and face to face over the years and I always valued his counsel and advice. A very wise man.

He will be sadly missed by all who knew him. Condolences to his family

Bri

User
Posted 24 Jun 2019 at 16:51
A really sad loss. I never knew Paul, even on the forum that much tbh , but I know he was well loved and a special clever person. It’s frightening just how many men have passed in the 4 1/2 years I’ve been on here , and it’s frightening with an incurable diagnosis that one may not be that far behind. I hope he has found peace x
User
Posted 24 Jun 2019 at 20:05

This is very sad news.  Another familiar name from when I joined the forum in 2016.  Rest in peace

User
Posted 25 Jun 2019 at 22:34

Paul's blog was one of the first ones I read when I stumbled on this site. His and a few others (sadly gone) helped me understand what the hell was happening to me.

It was their inspiration which made me want to share my story as well, hopefully helping others as I have been helped.

It also makes me so angry that so many lives are being ruined by this dreadful desease, not just the men but their whole families.

Sleep well, Paul.

User
Posted 26 Jun 2019 at 11:40
RIP Paul, as a relatively new poster didn't get to talk virtually that much but your insightful posts helped my acceptance of the disease in the early days after diagnosis.

Another great poster taken far too early.

 
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