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User
Posted 03 October 2014 06:35:42(UTC)

Good luck today Paul....and just seen your post about your dilemma as i specifically searched out your thread to wish you well.

You prob won't see this in time but if it is a new consultant why don't you ask what their experience is. I often wonder why the consultants at Doncaster don't to prostectomys. They are used to the question of experience as men opting for surgery often discuss their experience with them.

I think Lyn is right. The urologist for the urinary tract stuff and oncologist for the PCA. Of course you do then have the dilemma of whether they have the experience or not but you can ask. Having said that the Weston Park oncologist spends a day a week at the urology out patients...you'd like to think they are sending someone who is experienced

Bri

User
Posted 03 October 2014 16:08:26(UTC)

Thanks Bri. Well it has turned out alright again to my considerable relief! My PSA is up again this time to 27.35 which is nowhere near doubling and though the underlying trend is upward my new conusltant did not think we need to move to second line treatment yet, so casodex stay in your box for now! I was a little apprehensive this time which I have not experienced before I think it was partly the unknown of a new consultant. This guy is the clinical lead and I must say I was impressed. He was thorough and responsive and discussed all aspects. We talked about seeing an oncologist but he indicated that this would happen when I reach third line treatment I.e. When I am hormone-resistant and I was happy with that.

We discussed the UTIs and he decided to try me on a prophylactic dose of anti biotics to see if I can clear out the bug more thoroughly so that's worth a try. I shall continue to self catherise two to thre times a day which we also discussed and agreed my strategy was right.

I think the other reason I was nervous related to lots of things to engage me from now to the new year. I have things planned which I have been reluctant to do before. So a wedding, trips to Hong Kong, New Zealand and Hong Kong, christmas and new year are now all on before I have to return for an updated assessment in January. I will make 2015 and that will mean three years on from advanced metastic PCa which I hope will bring hope to all those just starting out even if you have bone mets. This is an unpredictable disease but many get time to make the most of life. TopGun would say enjoy this, life is for living!

User
Posted 03 October 2014 17:28:23(UTC)

Good news Paul. Excellent that you are under the clinical lead. So Mr P has gone (brianissac is always a reliable source ;-)

I thought about you as I drove through Tickhill on my way home from work tonight.

Hopefully the new antibiotic regime will sort the persistent u ti ' s.

Paul I wouldn't focus on 2015..look at other men who have been where you are at and worse and still alive and kicking many years later, focus way beyond 2015 mate.

See you soon

Bri

User
Posted 03 October 2014 23:55:53(UTC)

So pleased for you Paul, now you can concentrate on your speech and begin packing xxx

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


User
Posted 04 October 2014 10:54:30(UTC)

Thanks Bri and Lyn. I just want to say something of the realist in me which resists this sense that I have years stretching ahead for me as you suggest Bri, though I understand and appreciate why you say this. From the outset my mind set has been focused on the present, ensuring I have as much quality time as I can in whatever time remains. I am less concerned about quantity, in many ways I let the disease take care of itself. It will eventually transform and my life will become sticky. But I resist making predictions about long term survival. I think for three reasons.

Firstly it goes against the diagnosis. I have bone met spread and sit firmly in the incurable and ultimately terminal camp. I will take whatever time is given me of course I will but I never lose sight of that outcome.

Secondly dreaming you have lots of time leads to planning and expectations. I think one reason why this assessment was uncomfortable was that I so wanted to do the things I have planned up to the new year. I built up the check up and became concerned lest something got in the way. I have avoided that thus far and stayed more in the present.

This then is my third reason. This stems from that 'fiction of immortality' I talked about in the old file, ever decreasing circles. I am under no illusion that death is a 100 per center. So it happens to be this disease which will in all likelihood end my Iife but something else could intervene. Given that acceptance I can stay in the present. In my head tomorrow is what matters. I have found my life much richer for this focus than it has been for some years. So whilst I am caring for the present time takes care of itself. So in January I can look back and say I have made three years. If I make another three I will have filled my life with so many good memories. I don't need the fiction of immortality. I believe this is what TopGun did so well in what was a relatively short period left to him in the end. His motto is at the top of my favourite phrases. Ben also understood this too so well.

I do this becaue I do not want the disease to dominate my life. When people say to me you look well they do not need to know the disease is lying there waiting to pounce. I am for that day well and therefore that's enough. This for me is an optimistic philosophy that sustains me in moments of doubt. Hope these thoughts may mean something for others on this site.

User
Posted 04 October 2014 11:23:17(UTC)

That's all well and good Paul. I admire your outlook on life and fully understand your philosophy.....but can you answer my question.....as you say you are creating so many memories and living for today, so


.....why do you spend your time on the terraces at Oakwell throughout the winter.....

Lol..Sorry couldn't resist

Bri

Thanked 1 time
User
Posted 04 October 2014 12:09:54(UTC)

I like it! It's a life sentence if you were born there, cannot avoid it and there are some good memories.........occasionally!

Thanked 2 times
User
Posted 14 October 2014 11:03:02(UTC)

Just a quick update on my latest appointment with my diabetes consultant. My readings have risen slightly from 54 to 57 so he has further adjusted my meds to deal with that. He also does a PSA test which was 30.23, so a slight increase but very similar to my previous one a few weeks ago. So no real scares there and diabetes remains in reasonable control. It's reassuring to see this consultant as he tells me his mission is to keep my diabetes in control, so it does not interfere with the Cancer!

Anyway back to the wedding preparations!

User
Posted 14 October 2014 16:08:29(UTC)

Three days and counting?

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


User
Posted 14 October 2014 18:59:55(UTC)

Bon Voyage and see you in Dec

Bri

User
Posted 14 October 2014 20:45:50(UTC)

Can't wait to see the wedding pics on FB. Have a wonderful day another memory. The new regime with the Aunty Bs sounds good to me it makes sense .

I know the psa is rising but you still have options and the rises are slow. I would love to be there to see you proudly walking your daughter down the aisle. Get some one to take loads of pics.

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 October 2014 08:29:01(UTC)

I don't know whether it is psychological Julie but I have noticed a difference in my sleep patterns since starting the prophylactic dose of anti biotics. I am beginning to think that there was residual bacteria which was irritating me and causing the need to go to the loo more particularly at night. I am sleeping longer and after I get up early morning I can go back to sleep for a couple of hours which was always difficult until I self catherised!

User
Posted 15 October 2014 22:28:27(UTC)

Hi Paul,

That sounds positive, don't over sleep and miss the wedding. Trevor has just started another dose of Antibiotics for his chest and it is a similar story they sometimes just give a weeks worth and it isn't enough so it lingers and then comes back with a vengeance . Something must be working if your sleep pattern has changed.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 October 2014 13:05:02(UTC)

Hi Paul,

Have a great day tomorrow, will be thinking of you when it comes to the speeches

Also enjoy your next trip to HK i will be watching the news and expect to see you sitting in the market square with your umbrella supporting the protests .

Hope to catch up just before Christmas

 

Si

 

  

Don't deny the diagnosis; try to defy the verdict
User
Posted 17 October 2014 14:07:21(UTC)
Have a great time at the wedding Paul, and enjoy your next trip to HK see you before Christmas I hope
best wishes
Mandy Mo
Thanked 1 time
 
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