More Ever Decreasing Circles

User

Posted 01 Jun 2014 at 11:25

This week saw the death of Maya Angelou whose inspirational life and response to adversity was without equal. Her passing reflects the uncomfortable reality that life on this planet is inevitably temporary. I therefore have no problem extending my thread in this topic area. I have known for a long time now that accepting that dying will one day be reality that this frees me up to focus on living and my life. TG's simple signature 'Life is for Living” and his approach to the last few months is absolutely how I intend to approach my future however long it lasts.

My previous thread talked a lot about the mortality paradox and for those interested it can be found here - http://community.prostatecanceruk.org/posts/t9555-Paul-s-ever-decreasing-circles#post9555 - but its time to move on and with my consultant appointment for PSA check etc etc this week it seemed the best time. I am having a good run for now over two and a half years since diagnosis (G9, bone met spread) but with that ever-present threat that the news might not be the same. But until I hear the news I can put it all to one side. Having had four successive UTIs I do wonder what is going on but fit may just be an occupational hazard from twice a day self catherising.

I wanted to start this new conversation with the following affirmative quote from Angelou, redolent of TG's and Mick's current fights:

I've always had the feeling that life loves the liver of it. You must live and life will be good to you, give you experiences. They may not all be that pleasant, but nobody promised you a rose garden. But more than likely if you do dare, what you get are the marvelous returns. Courage is probably the most important of the virtues, because without courage you cannot practice any of the other virtues,

I so agree!

User

Posted 04 Oct 2014 at 13:09

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

User

Posted 01 Jun 2014 at 11:25

User

Posted 01 Jun 2014 at 16:12

Hi Paul et all,
Whilst I totally agree with the sentiments expressed I am not sure that I am all that you might think I am. Like you I realise that death is inevitable and being alongside someone who was shot and almost being shot myself on another occasion I realised that years ago life had to be lived to the full, not just for me but for, and with, all those near and dear to me. Worry when waiting for results etc.is of course something we all go through but ultimately what is the point, it won't change anything apart from actually making things worse because of depression.
Actually I am not in a very good place myself at present, a fine afternoon we went to a local park to lie on the grass and listen to a couple of local bands and have an ice cream. Unfortunately I had to go because of the extreme discomfort I was in, that of course spoilt not just mine but Karen's afternoon, not that she would say. It does go to show though that wherever / whenever possible one must take full advantage of all the good times.
Life really is for living
Barry (alias Barrington )

Edited by member 01 Jun 2014 at 16:13 | Reason: Not specified

User

Posted 30 Sep 2014 at 15:36

Only my view but, even though John is nowhere near your diagnosis & situation, we have benefitted from alternating appointments with both an oncologist and urologist. They think and address different aspects. In your situation, I would want to retain contact with the uro due to the ongoing urinary difficulties and catheter use. I would feel more confident in an onco when it comes to trials, changing drug regimes and the tough decisions that you know will be ahead of you some day.

Does that help?

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

User

Posted 04 Oct 2014 at 12:23

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

User

Posted 17 Oct 2014 at 15:07

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

Show Most Thanked Posts

User

Posted 01 Jun 2014 at 16:12

Edited by member 01 Jun 2014 at 16:13 | Reason: Not specified

User

Posted 01 Jun 2014 at 16:41

I feel for you Barry no matter how you think about life and living it, physical pain is our Achilles heel. I have been low recently with just UTIs and the general fatigue of HT but it does get to you. I cannot imagine the pain you and Mick are currently experiencing. We know pain control is so much better these days but that means nothing when we experience it. Sometimes we have to take a time out for ourselves just to be strong enough to help others cope too. No easy answers here I'm afraid!

User

Posted 01 Jun 2014 at 17:13

Hi Paul & Barry,

I visit this forum at least once a day, but rarely post. Both your comments make me think should I really be here, why don't I just forget about my cancer and just get on with my life then may be it wouldn't pray on my mind so much. My GP a long time back told me that most people with cancer that when they go to sleep at night it's the last thing they think about and also the first thing that comes into their mind when they awake. I find this so true. I'm now 8 years down the road, and have been very fortunate compared to some, yourselves included, but feel that things are starting to catch up on me.

I guess I'm just waffling, but I have to agree with you that Life really is for Living. If it hadn't been for this bloody Pca I can honestly say my life at the moment is just perfect and has never been better.

Kind regards to you both and all.
Stu

User

Posted 01 Jun 2014 at 18:16

Hi Stu,
Forget about it, if only we could. You have done well, 8 years no less. Believe me it is always on my mind but strangely not in a worrying way. I do try and take an interest in PCa matters but don't have the medical acumen or practical knowledge of others like Allister, Lyn and so many others on here. Hence I am limited on what help I can give other than advising a positive approach and trying to put over that life really is for living whilst we have the chance. Perhaps I have one asset in that the 30 odd years I spent in the Army gave me some admin and organisational skills which I was able to put to good use in starting up and running a local support group but I always relied on guest speakers to give out any medical information...I just got the speaker there.
In some respects having PCa has given me a better outlook on life and certainly has brought me into a wider world where I have met and made friends with so many people who of course would have always been strangers. It has also brought me closer to my family which has led to us all being more open about expressing the love we share for each other. Nowadays the words "I love you" are said far more often.
Ah well enough maudlin,
Life is for living
Barry (alias Barrington )

Edited by member 01 Jun 2014 at 21:59 | Reason: Not specified

User

Posted 01 Jun 2014 at 19:01

I love you!

Yorkhull, you always write so beautifully and you express the thoughts & feelings that others perhaps don't have the vocabulary for. For what it is worth, I suspect that you are never successful in eradicating the UTI - you are simply knocking it back a bit but it lurks and then resurfaces. Can you not beg for a long-course antibiotic to see if that nails it?

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

User

Posted 01 Jun 2014 at 21:43

Thanks Lyn and Stuc. I believe I focus more on my life because I understand there is an end point and it becomes more about quality. Strangely the more time then seems to pop up and extend the journey.

I shall gave that very discussion on Friday Lyn unless other matters intervene!

User

Posted 01 Jun 2014 at 22:52

Paul

I think it is fair to say that Mick has totally reconciled himself to what lies ahead, he has also gained a lot of strength and courage from your very thoughtful postings. Without that kind of view it would have been difficult to go through all the advance care plans and End of Life decisions that Mick has done just recently.

TG you have also been an inspiration, not necessarily through the way you handle your own inevitable situation but the fact that you still devote your life and spare time to helping others with Pca or those that might need to identify that they may have Pca, but also your army colleagues.

We all seem to draw strength and courage from each other, share the good and the bad and that is why this forum is so amazing.

Mick and I are looking forward to Leicester, so is our daughter Karen just hoping that Mick is also infection free and stronger by then.

User

Posted 01 Jun 2014 at 23:13

I always look forward to reading your posts Paul because you are exceptionally articulate and you have a way with words that I lack. I often (like many others here) want to comment on posts but can't seem to out my thoughts into words without seeming trite. Thank goodness we still have some wonderful people here whose words, actions, thoughts and inspirational way of living, have transformed this site into a wonderful, safe place for us to come and share our stories.

I know this site has lost some of it's heart lately, mainly due to the move and us all trying our best to get used to the new paradigm (I pinched that from some management guru), but it's people like Lyn, Paul, Topgun, Allister, Julie and the magnificent Mo, that make this place feel like home. Not forgetting Bri and Si of course. Stu, I. Still come here nearly every day, I want to help others and I want to know how people are getting on, good or bad. I didn't know how anyone can ever be the same again after a cancer diagnosis, it's just the way it is and whatever makes you feel better is all good.anyway, where would we get our information on Pca from? Certainly not our doctors.

I still love this forum. There are really good people here.

Lots of love
Allison

Edited by member 01 Jun 2014 at 23:15 | Reason: Not specified

User

Posted 01 Jun 2014 at 23:59

One can only admire those who live life knowing that it is not as they would wish, yet handle their situations so positively. It is for people like you I am determined to get involved in raising awareness of PCa, so that prognosis can be made as early as possible in treatment, before too much damage is done. My father will probably die of PCa - he will be having a final fling in Mykonos, his beloved holiday retreat, for one last time this month, before needing an operation on his kidneys.

I am not looking forward to the next few months, but hope to support him and my mother in every possible way. You people are the inspiration for us all.

Paul

Stay Calm And Carry On.

User

Posted 06 Jun 2014 at 17:17

So with so many having good news this week with their PSA scores I had hoped to follow suit. Well the news is ok but the trend remains upward for me coming in at 19.1 today (up from 11.1). But there are some caveats - it's not doubling, (41/2 months), it was taken shortly after an infection and antibiotics so my consultant believes this could impact on it - and there are no other signs of issues/concerns. So the conclusion is business as usual carry on as before.

My consultant believes that it is inevitable that my PSA will rise over time as I have, what he called a high grade cancer. (G9) We considered casodex but he was happy to leave it in the box for now, given the additional side effects it may cause. He was keen to help me continue to work and believes that the side effects of casodex might be debilitating given the levels of fatigue I sometimes have with the current HT.

It was a good session and I feel reassured that for now some of the more invasive treatments can wait as I am not yet hormone resistant. He confirmed that I would likely get more UTIs (four in last nine weeks) as it is an occupational hazard of self catherising. But interestingly he suggested that when/if it returns I should increase my catherising to four times a day so the bacteria is removed quickly and this might aid recovery. I had not done that so if it comes back (7 days post antibiotics for now) I shall try that. He also gave me enough antibiotics to keep me going so I can tackle it quickly.

Feel relieved and can continue on for the next four months, enjoy the summer and look forward to my daughter's wedding and work trips to Hong Kong and New Zealand before Christmas. Good enough reasons to stay well. Two and a half years on, despite the bone mets, life goes on. As others face difficult times, and we have sadly lost our dear friend, Mick, this week, I feel lucky to continue on.

User

Posted 06 Jun 2014 at 17:32

Enjoy the summer Paul.... your armoury is well stocked

Bri

User

Posted 06 Jun 2014 at 18:15

Hi Paul,
Despite the rise in PSA it is good to read how positive you are. The relationship you have with your consultant is excellent and between the two of you it is good to see that you are both in agreement with the way forward. His suggestion of more regular self catheterising might make others wince but makes sense and I hope you can shake off these UTIs. I know how wearing that can get.
Will meet up soon, I am no longer staying for the three days as planned but will be there to scoff the buffet and get tucked into a steak in the evening.
Keep up the good work
Life is for living
Barry (alias Barrington)

User

Posted 06 Jun 2014 at 18:35

I heard somewhere that someone had said "Live every day as though it were your last, because one day it will be."

You express yourself and other's thoughts so eloquently Paul.

But, once you come to terms with what is happening, it is easier IMHO. Calmer anyway.

Have a good weekend.

Dave

User

Posted 06 Jun 2014 at 21:23

Hi Paul,

Not quite the news that you had hoped for but as your consultant said the recent UTI could have had an impact on the psa. It certainly sounds as if you have a full diary for the summer. Have a wonderful time at your daughters wedding.

Onwards and upwards

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jun 2014 at 22:44

Hello Paul
sorry you didn't get the result you wanted suspect the infection had given it a little nudge. You remain very positive as usual.
I had a coversation with Eric what if youwere dx early I was shocked by his reply.
He said could not go through all the worry operations bladder problems and everything else that comes with it he takes his hat off to all the guys here.
Eric has been strong the pain is getting worse each day for him,truthfuly he dosen't have any quality of life and has come to terms with the hand he has been dealt.
Have a good weekend.
Carol

User

Posted 06 Jun 2014 at 23:29

Your positive approach, Paul is to be much admired. Lots to look forward to. With the debate over photos on another thread, I am sure we would all want to see a photo of the proud dad!

Paul

Stay Calm And Carry On.

User

Posted 06 Jun 2014 at 23:46

Okay so it went up but there are enough composite factors there to consider that the PSA may not be entirely reliable this time - perhaps if it was taken now, the level would have dropped a little. Interesting theory on increasing the catheterisation ... it crossed my mind that the brand of catheters may have changed or manufacturer might have changed the material slightly and that was behind all the infections?

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

User

Posted 07 Jun 2014 at 08:42

HI Paul

so PSA is up a little, but as you say other factors may have caused that. YOu still have a lot of treatment options in the box so that is good too. I do worry about you self catheterising as it is a common cause of UTIs, doing it more often does decrease the risk of perpetuating an existing infection but because of the nature of the procedure I would have thought it would also increase the risk of a new infection.

I am so pleased you have trips to plan for work as well, I am not a big fan of Hong Kong but New Zealand is an altogether different thing, probably the place Mick and I would have settled if we did not have family ties here. Do you need a travelling secretary???http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

See you soon my friend

User

Posted 07 Jun 2014 at 09:47

I love Hong Kong and live in the perpetual hope that Paul will bring me back a handbag or two but he tells me the handbag shop is always closed when he looks.

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

Notification

Join the online community now.