Ever Decreasing Circles part three

User

Posted 13 Aug 2018 at 11:50

I have many physical limitations around mobility I did not have six years ago but you can make sense of that. Fatigue is more subtle and multi-dimensional and I hope the blog illustrates this.

User

Posted 05 Sep 2018 at 12:45

Ok latest 4 weekly catch up a bit disturbing. Suddenly PSA has jumped from 12 to 19.26. It is either the start of rejection of enzalutimide or an anomaly. Onco checking every avenue. He thinks that my clinical signs remain good so we continue for four weeks. But CT Scan to be done to check there is no disease progression in soft tissues. Also urology tomorrow to see how far the problems there might be interfering with PSA. Unsettling times. Felt a bit down last night but I keep going as always.

User

Posted 05 Sep 2018 at 13:34

Hi Paul,

Good to hear you are still keeping going. Sorry to read about that jump though. Hope it pans out okay?

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 05 Sep 2018 at 15:53

Sorry to read about the jump in PSA Paul. I sincerely hope it’s a blip rather than a trend.

Good to see you co to fight.

Best wishes,

Ian

Ido4

User

Posted 05 Sep 2018 at 17:53

Eeeeek - let's focus on the possibility that it is an anomaly

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

User

Posted 05 Sep 2018 at 18:15

Fingers crossed for you Paul.

We can't control the winds - but we can adjust our sails

User

Posted 05 Sep 2018 at 21:36

Paul

A bit tish, hope it is a blip,keep going mate.

Thanks Chris

User

Posted 05 Sep 2018 at 21:54

Fingers crossed, mate!

User

Posted 06 Sep 2018 at 18:28

Ok urology report. Not too much to stay. No infection. Retention smallish (119 ml). Immediate strategy, self-catherisation at night after lower drink intake post 6 pm. Monitor intake and expel of urine over three days. Return in a few weeks to see if this has made a difference. Possible to add a tablet which increases bladder control. Will consider this after above has been tried. If both fail last resort find ways to keep dry at night through a sheath. They want to see if they can stop it first. So pretty thorough and let’s hope I get some improvement.

The joy of self-catherisation again but only once a day.

User

Posted 06 Sep 2018 at 19:02

Paul - sorry to see the trials you're going through. Hope things settle down.

Ulsterman

User

Posted 06 Sep 2018 at 22:59

Fingers crossed for the improvement Paul. You’ve managed the self-cathing in the past so hopefully this won’t prove to be to much of an issue for you

Bri

User

Posted 02 Oct 2018 at 11:41

So my oncologist has gone, replacement not coming. So I saw another consultant from Sheffield who was fine. PSA up slightly to 23.16. CT Scan was fine apart from a kidney issue. He is happy to continue regime whilst urology look at kidney issue. Functioning of kidney has not been good for while and scan reveals blockages in the tubes. Scan does not show it is cancer and hopefully it is not. Urology will look at it and decide how best to unblock via stents or an external bag. So it’s an issue but hopefully not cancer-related. Otherwise I continue for 4 weeks as before. Not bad really.

Saw urology nurse yesterday who has prescribed a tablet to reduce bladder contractions which alongside self catherisation it is hoped will reduce nighttime wetness. If this fails it will be down to keeping me dry via sheaths or pads.

So on-going issues and usual side effects but still on enzalutimide for another 4 weeks. So I am happy with that.

User

Posted 02 Oct 2018 at 11:46

Good news and another few weeks of breathing space for you.

But something bad has happened and your sign in name has been changed to your email address - eeeek!

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

User

Posted 02 Oct 2018 at 12:06

Thanks Lyn i’ve Corrected it I hope.

User

Posted 03 Oct 2018 at 15:56

Paul

Keep going mate, the joys of ISC. Just being nosey, what meds have you been prescribed for the bladder ?

Thanks Chris

User

Posted 03 Oct 2018 at 19:39

As stoic as ever Paul. Good you are continuing with the Enza and obviously hoping they sort the kidney problem. Are you still getting about with your scooter?

Bri

User

Posted 03 Oct 2018 at 20:20

My view is that the kidney issue is more diabetic related Paul (same as my father) keep an eye on arteries (heart/kidney) which often become constricted due to diabetic progression. Where does your Onco see you heading next after Enza. Does he think there are any trials for nuclear treatments that should be considered or possible.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 03 Oct 2018 at 22:03

Chris I am taking Toviaz fesoterodine fumarate 4mg one tablet daily. First two days have not been encouraging.

Brian, I get on the scooter quite a bit mainly when I am with my son. Confidence has took a bit of a beating and going out on my own feels quite challenging. But happier if with others.

Fresh I guess it could be diabetic but it’s been in reasonable control for a while now. Not due to see my consultant on that until next March which is annoying,

I will have either chemo or radium 223 if I choose to go with either but that can all depend too on how they resolve the kidney issue. So the longer on enzalutimide, the less I need to make decisions on what next,

User

Posted 03 Oct 2018 at 22:12

Paul

I have tried about 5 different bladder relaxing medications and they do take about a week to kick in. Like others have commented on here they sometimes lose thier effectiveness after a while, not tried the one you are on. Best wishes.

Thanks Chris

User

Posted 19 Oct 2018 at 16:04

So next steps on the kidney issue. I’ll try and give a summary. Saw my favourite urologist today which was great. There were a number of possibilities, some worse than others which he investigated via a flexible cystoscopy. Not easy but got through it. There is good news. Lots of debris in bladder (old books, articles, clothes etc etc) but it indicates that the kidney blockages are being caused through taking up this debris. So no stoma bags for now, no turp to clear out urethra, but most likely is a permanent catheter. You can imagine I greeted this with a whoop. If this works, dry nights, no getting caught short, bladder clears kidney tubes and therefore kidney function improves and I feel better. So they have given me the weekend to think it through and it will be fitted Monday. The doc plus The nurse practitioner were brilliant, I got a bit upset. It’s been difficult coping with all the side effects from this so if this works my quality of life should improve. This solution is the least invasive so there is good news in there somewhere as bladder otherwise was ok. So another circle disappears and life continues. Just hope it gives me better sleep and maybe I can get used to it.

User

Posted 19 Oct 2018 at 16:21

Paul

Are we talking supra pubic , uretheral or something slightly different ? I have had a SPC for about 18 months night times are great, attach a night bag open the tap and wake up hours later. Day time is slightly different, the natural function ot the bladder does kick in even when I am on free drainage so a pad is still required. The amount of leaking is easily managed. I joined a urostomy awareness Facebook site they do seem to struggle with attaching bags to the skin and lots of leaks. I will stick with the SPC for now.

Best wishes Chris

User

Posted 19 Oct 2018 at 17:21

The words supra pubic were not used so I assume normal catheter.

User

Posted 23 Oct 2018 at 12:23

Turned out to be a difficult day yesterday. Catheter went in, no problem and was draining well but then I got pain at the end of my penis which would not shift. At times it was unbearable. Nurse tried a number if things but it did not improve, so after a harrowing 90 minutes she removed the catheter. So felt tired and washed out last night and the old regime of short sleeps and wet beds were back.

Tiday feel ok but awaiting news as to what they will try next, after all this was designed to solve kidney problem. Another day in the life to deal with.

User

Posted 24 Oct 2018 at 06:43

Have you considered an external catheter?

They use a condom style attachment rather than inserting a tube.

Amazon has them.

Edited by member 24 Oct 2018 at 06:45 | Reason: Not specified

User

Posted 24 Oct 2018 at 07:31

Paul,

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Barry

User

Posted 24 Oct 2018 at 10:40

I have looked at the convenient sheaths and this would help the night time leakage. However the reason for the catheter was to solve the problem of my kidneys getting blocked. This is the main medical issue. I am awaiting next steps on ways to resolve the kidney issue but if it can be done without a bag or catheter then I will be able to look into the sheaths.

User

Posted 24 Oct 2018 at 10:41

This is ridiculous, how do you feel about getting a supra-pubic instead? Or was it a different type of plastic to the ones you usually self-catheterise with? Some people are very allergic to some catheter tubes.

I hope they call you back in with a solution quickly x

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

User

Posted 24 Oct 2018 at 22:58

I was surprised and disappointed as it was suggested this would deal with the kidney problem. Obviously I have to see what they suggest next and whether they would try a catheter again or other versions or something more direct with the kidneys - stoma bags and stents have been suggested. For now a bit in limbo as I wait for the view of the urologist.

User

Posted 31 Oct 2018 at 11:16

So four weekly oncologist check up again. Another new temporary medical oncologist (what’s the difference between a medical and clinical oncologist) but she was fine. Understood where I was at and given everything going on in urological area a slight PSA rise was largely discounted. -26 now. But she talked of having chemo before I was not well enough to have it but agreed to continue same enzalutimide treatment for another 4 weeks. So good news really. Also kidney function improved down from 141 to 116 which is where it was 2 months ago. Not sure what is the normal range but the washout I had with the cystoscopy must have helped unblock the tubes. Again good news.

Then went for zometa infusion and weight down again by 4gs in four weeks. Now this is the best diet I have ever been on but maybe not healthy. Because I was so overweight I am getting back to a reasonable weight which is cool but eating remains a problem as do the wet nights. Urologist in two weeks hope some solutions around the corner.

User

Posted 31 Oct 2018 at 12:18

You have a lot going on Paul but a good few positives there.

I hope you get some sort of solution on the wet nights.

Best wishes,

Ian

Ido4

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

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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