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User
Posted 19 Feb 2017 at 09:44

Hi all

I have written a few posts, but have not really introduced myself!  As this site is pure gold, I think I would just like to feel a little more included by adding some info.

I first went to my GP in May 2016, when the whole process started.  In hindsight, being put on antibiotics was perhaps not the best approach to start with!  So, several prods and pokes down the line I find that I have a PSA of 21/22, Gleason 9 (4+5), T3a, N0 M0 and a bid ol' lesion (2.8cm).  Suddenly I have become a measured entity. Bone scan was clear, RP by robot on 17th Jan.  It's still a little tender!

And now I have entered a new world of recovery, incontinence and ED.  Unfortunately, as I am self employed, I had to get back to work ASAP.  That was head, as my head has been full of PC based thinking and trying to understand as well as re-learning bodily functions. My lovely wife is incredibly supportive, though this has taken it's toll on both her and me. 

Anyway, after 3 weeks of being back at work, we are now going to Cornwall today for a week of total R&R.  I am very much looking forward to a near total switch off - no phone, radio, TV, wifi, just sky, hills, coast, rocks and nature in various guises.  And of course fine food and wine.

I have the appointment with the surgeon on 6th march to discuss the pathology report, which is the next big event.  And here's the odd thing - I don't feel nervous, I actually feel excited about it!  I tend to live/'think day to day, and I am not getting down about any thoughts about the future (as it hasn't happened yet).  Is excitement normal?!  I suspect it's because I do like a challenge in life, and it may just be that the next appointment will present some challenges for me to get my teeth in to.

Oh well, perhaps getting incontinence (how exactly is that measured? drips?  no control at all?) sorted, and simultaneously nailing the ED aspect of life is enough to be getting on with!   

Sorry for the ramble, I just like to feel involved!  Good luck to us all on this bizarre roller coaster, and enjoy the silver linings - they really are there.

cheers

Graham

User
Posted 01 Mar 2017 at 08:23

Hi Graham
I'm with you on the need to "own the situation"
I felt the same about my life being controlled by the NHS (no criticism about the NHS) and have taken little steps to get some control of my body back - I like to think I'm inquisitive and not a worrier and so like to understand what's going on. I always ask for my blood results before my appointments (I hate surprises and I hate the statements "everything is ok) and so I'm asking questions about what each measure is about. Also after 2 years since dx I've asked my Onco for a progress ct and bone scan which she has accepted. I just want to know what's happening.
My wife and I control my diet, I keep fit.
We like to keep moving about so in 1 week were of cruising for a month.

I'm on my second reading of Sophie Sabbages book The Cancer Whisperer.
I'd really recommend this - it's about how to learn from your cancer and how to keep control of your life.

Sorry about the rambling but I hope my words help in some way.

All the best
Paul

User
Posted 19 Feb 2017 at 09:44

Hi all

I have written a few posts, but have not really introduced myself!  As this site is pure gold, I think I would just like to feel a little more included by adding some info.

I first went to my GP in May 2016, when the whole process started.  In hindsight, being put on antibiotics was perhaps not the best approach to start with!  So, several prods and pokes down the line I find that I have a PSA of 21/22, Gleason 9 (4+5), T3a, N0 M0 and a bid ol' lesion (2.8cm).  Suddenly I have become a measured entity. Bone scan was clear, RP by robot on 17th Jan.  It's still a little tender!

And now I have entered a new world of recovery, incontinence and ED.  Unfortunately, as I am self employed, I had to get back to work ASAP.  That was head, as my head has been full of PC based thinking and trying to understand as well as re-learning bodily functions. My lovely wife is incredibly supportive, though this has taken it's toll on both her and me. 

Anyway, after 3 weeks of being back at work, we are now going to Cornwall today for a week of total R&R.  I am very much looking forward to a near total switch off - no phone, radio, TV, wifi, just sky, hills, coast, rocks and nature in various guises.  And of course fine food and wine.

I have the appointment with the surgeon on 6th march to discuss the pathology report, which is the next big event.  And here's the odd thing - I don't feel nervous, I actually feel excited about it!  I tend to live/'think day to day, and I am not getting down about any thoughts about the future (as it hasn't happened yet).  Is excitement normal?!  I suspect it's because I do like a challenge in life, and it may just be that the next appointment will present some challenges for me to get my teeth in to.

Oh well, perhaps getting incontinence (how exactly is that measured? drips?  no control at all?) sorted, and simultaneously nailing the ED aspect of life is enough to be getting on with!   

Sorry for the ramble, I just like to feel involved!  Good luck to us all on this bizarre roller coaster, and enjoy the silver linings - they really are there.

cheers

Graham

User
Posted 28 Feb 2017 at 08:38

Morning all.
Thanks for the lovely replies! Well, back from Cornwall where the isolation was very most welcome. OK, so I overdid it a bit (apparently that's normal for me) with some great coastal walks and a bit of scrambling at Sennen, but all I in all the break worked very well.

What struck me on our return was how 'medicalised' I had got before we left. All the endless appointments and relentless information, it seemed to take over our lives and we forgot what life is actually about. We have come back with relaxed heads, free of any anxiety and just rolling on again. I had my blood test yesterday with the GP's nurse - it was interesting that this time I felt that I owned the situation rather than the NHS owning my body and circumstances. Long may that continue!

So now I have an appointment next week for pathology report and post-op PSA, but that's next week. In the meantime I have a job interview that I really really want, and enjoying getting back into work again. And the cat is happy to see us back.

cheers
G

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User
Posted 19 Feb 2017 at 12:25

Hi Graham
Nice intro and great information. Love your attitude. Enjoy that break to the full and relax. I wish you all the best with recovery and keep posting ok. Lots of great info on here but the search function is naff at best. Ask us all !

User
Posted 19 Feb 2017 at 14:32

Have a great break - beautiful place to go

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

User
Posted 19 Feb 2017 at 19:35

Nice to meet you Graham!

Hope the sun shines upon you, the food is delicious, the wine plentiful and the views glorious.

Eleanor

User
Posted 19 Feb 2017 at 19:51

Hello Graham and Mrs Graham

Love your positive take on your situation.

Is it normal to be so excited? Not for everyone perhaps, but that's your normal and that's all that matters.

You may well have challenges ahead. It is very early days for you if the operation was only on 17th January so don't expect too much in either the continence or ED departments. If you have good results, great - well done you.

If it's all in the slow lane, you're going to manage, given your attitude.

Enjoy the break, the pair of you. "Your lovely, supportive wife" will also cope, despite the toll it's taking on her. Why?

Because she has you still and that's the main thing.

Be patient with yourself and each other and you'll do just fine

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 28 Feb 2017 at 08:38

Morning all.
Thanks for the lovely replies! Well, back from Cornwall where the isolation was very most welcome. OK, so I overdid it a bit (apparently that's normal for me) with some great coastal walks and a bit of scrambling at Sennen, but all I in all the break worked very well.

What struck me on our return was how 'medicalised' I had got before we left. All the endless appointments and relentless information, it seemed to take over our lives and we forgot what life is actually about. We have come back with relaxed heads, free of any anxiety and just rolling on again. I had my blood test yesterday with the GP's nurse - it was interesting that this time I felt that I owned the situation rather than the NHS owning my body and circumstances. Long may that continue!

So now I have an appointment next week for pathology report and post-op PSA, but that's next week. In the meantime I have a job interview that I really really want, and enjoying getting back into work again. And the cat is happy to see us back.

cheers
G

User
Posted 28 Feb 2017 at 09:03

Welcome home !

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2017 at 08:23

Hi Graham
I'm with you on the need to "own the situation"
I felt the same about my life being controlled by the NHS (no criticism about the NHS) and have taken little steps to get some control of my body back - I like to think I'm inquisitive and not a worrier and so like to understand what's going on. I always ask for my blood results before my appointments (I hate surprises and I hate the statements "everything is ok) and so I'm asking questions about what each measure is about. Also after 2 years since dx I've asked my Onco for a progress ct and bone scan which she has accepted. I just want to know what's happening.
My wife and I control my diet, I keep fit.
We like to keep moving about so in 1 week were of cruising for a month.

I'm on my second reading of Sophie Sabbages book The Cancer Whisperer.
I'd really recommend this - it's about how to learn from your cancer and how to keep control of your life.

Sorry about the rambling but I hope my words help in some way.

All the best
Paul

 
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