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User
Posted 01 June 2014 10:25:54(UTC)
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.prostat...reasing-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!
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 01 June 2014 10:25:54(UTC)
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.prostat...reasing-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!
Thanked 1 time
User
Posted 01 June 2014 15:12:51(UTC)
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 )
Thanked 1 time
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User
Posted 01 June 2014 15:12:51(UTC)
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 )
Thanked 1 time
User
Posted 01 June 2014 15:41:07(UTC)
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 June 2014 16:13:00(UTC)
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 June 2014 17:16:13(UTC)
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 )
User
Posted 01 June 2014 18:01:15(UTC)
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 June 2014 20:43:45(UTC)
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 June 2014 21:52:02(UTC)

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.

XX

Mo

User
Posted 01 June 2014 22:13:49(UTC)
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
User
Posted 01 June 2014 22:59:45(UTC)
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 June 2014 16:17:29(UTC)
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 June 2014 16:32:30(UTC)
Enjoy the summer Paul.... your armoury is well stocked

Bri
User
Posted 06 June 2014 17:15:57(UTC)
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 June 2014 17:35:03(UTC)

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 June 2014 20:23:44(UTC)

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 June 2014 21:44:19(UTC)
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 June 2014 22:29:28(UTC)
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 June 2014 22:46:13(UTC)
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 June 2014 07:42:53(UTC)

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???

See you soon my friend

Mo

xx

 

User
Posted 07 June 2014 08:47:08(UTC)
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


User
Posted 07 June 2014 10:38:52(UTC)
Thanks to all, Brian, Barry, Julie, Carol, Lyn, Dave, Paul and Mo for your responses. I think the self catherising is always a paradoxical benefit. I know that my nights would be untenable without the relief I get just before I go to bed. Its a five minute procedure and is more or less painless. But there is this risk. Having said that I went over two months without a UTI and did this before last year. I guess once the UTI takes hold the catherising might encourage it. I'm 8 days on so far so keeping fingers crossed I get a break. Not sure Lyn there is a problem with the catheters themselves. I have used them from different batches and I get them new from the chemist. I remember reading that just a few years ago they used reusable catheters now that was an infection carrier!

Carol I agree with Eric to some extent. The pain that people go through with RP and RT with a curable diagnosis is far worse than I have had so far. I recall the impact of much less developed and focused RT when I had testicular cancer in 1982. They just blasted my stomach somewhat indiscriminately! I guess you would opt for it though as a curative state is obtainable whereas with mets the end, however delayed, is nearer! Harsh reality but just a fact! And the pain Eric is feeling must be so unbearable.

I have my diabetes appointment in a couple of weeks and will get an updated PSA from that and it will be interesting to see if there is any difference. I haven't done the blood test yet delaying to get as far from the last UTI as possible. Will do it Tuesday
If still free from infection and that would be 11 days so may get a different reading though my consultant talked of six weeks to be absolutely sure. I am not that concerned as I expect some rise given the prostate is still there and apart from the HT untreated but I hope still contained. I am treating this as another four month pass to get on and enjoy my life and still on track to complete first draft of my novel by the end of the summer. Nothing like some good news to create procrastination!

I cannot agree Mo about Hong Kong. It is my second home and I love every minute I spend there. Had seven months on sabbatical there and it was a great experience. If PCa had not come along I would be working there now but sadly that was not to be. Hey HO the fact I get to visit twice this year, if I stay fit, is more than compensation. Mulberry Lyn?

New Zealand is another treat. I went in 2012 and I thought that would be my last trip. It is a country of great beauty and the people are great. I am planning to have a few days relaxing with a close friend who moved out there. I can only take about 4/5 days official leave or it invalidates the insurance and one reason I go with work is that the insurance is not a problem.

These results are all relative to everyone else's problems. Things overall remain pretty good for me for now so I am going to enjoy that and carry on living!
User
Posted 18 June 2014 21:58:20(UTC)
Quick update. Had my diabetic consult today and whilst it remains in reasonable order 54 (7.1 in old currency) but after discussion on the UTIs he has changed one of my tablets to see if I can lower the readings a bit and help reduce the chances of UTIs developing. But there is a slight chance of hypos on this one so I have to start regular testing and carry tablets around to avoid them, so if you see me going a little vague when you see me its just the diabetes and get me a bottle of luxazade!

I had another PSA result which is 20.75 so just a slight rise in a month so continue as before. No recurrence of the UTI for 19 days so maybe I will have a respite. Otherwise feeling ok!
User
Posted 18 June 2014 22:11:25(UTC)
Good that there is no significant rise in the PSA Paul. Let's hope the UTI's stay at bay also.

Bri
User
Posted 19 June 2014 20:08:46(UTC)
If you have a hypo on Saturday, does it have to be lucozade or can it be beer?

I hadn't thought to associate the UTIs with your diabetes but of course that is one of the indicators for undiagnosed diabetics isn't it?

Looking forward to seeing you and having a catch up x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 19 June 2014 22:42:55(UTC)
Hi Paul,
That's what I like, having a ready made excuse in place....." If you see me a going a little vague" ...it's the diabetes . Whereas us regulars know exactly what causes the wobbles 🍻 and why not indeed.
Pity about the slight rise in PSA but good news on the UTI front. See you soon Paul.
Life s for living
Barry (alias Barrington )
User
Posted 20 June 2014 15:35:07(UTC)
I have decided not to start the new tablet until after the weekend. Been out a lot this week and with Leicester etc thought it best to wait until I had a better week to get into the routine of testing etc. I think the concern Lyn about the UTI is having any sugars in the system which the bacteria can feed on and resist elimination.

I won't be drinking this weekend i'm afraid Barry, have decided to wait until well clear of the UTIs before considering alcohol again.
User
Posted 20 June 2014 16:58:23(UTC)
Barry's sarnies, Paul's alcohol, what am I going to do ;-)

See you tomorrow

Bri
User
Posted 20 June 2014 17:23:57(UTC)

Bloody share it

 

See you tomoz

 

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 10 July 2014 15:54:52(UTC)
Just a but if info if you haven't seen it. I have just signed up for this free online course run at my university, Sheffield Hallam University. The details are:


Enhancing Prostate Cancer Care
A FREE, Massive Open Online Course (MOOC) delivered in collaboration with Prostate Cancer UK and powered by PebblePad
It will run over 5 weeks duration:
13th October - 14th November 2014
A course designed and developed to bring together and draw upon the expertise and perspectives of a range of health professionals (including Oncologists, GP's, Nurses, Therapy Radiographers, Physiotherapists, Occupational Therapists, End of Life Care specialists etc. students training in these fields) patients/service users and carers.

Indeed, anyone involved with or interested in the Prostate Cancer Care Pathway, is invited to help explore ways in which this could be enhanced for the benefit of the patients, service and practitioners.

There is a different focus for each of the weeks as specified below:
Week 0 - Orientation
Week 1 - Diagnosis
Week 2 - Treatment with curative intent
Week 3 - Metastatic Disease and End of Life Care
Week 4 - Survivorship

The course will utilise the workbook functionality in pebblePad as the means of delivery ('MOOC in a Book'), which will mean you can 'take away' all of the course resources and evidence of your participation in it, at the end of the course ('MOOC to Go').

It can be accessed here on this site or see https://v3.pebblepad.co....cfHh5jGR3yMsbgM97c4qw9bw

Hope to see you online. I have spoken to the course director and they have lots of health professionals but not many patients or carers,
User
Posted 10 July 2014 18:08:24(UTC)
Paul i would love to do this. i am assuming i can do it when i am on hols in usa on the internet. Still?
Xx
User
Posted 10 July 2014 19:30:29(UTC)
I have asked that question as I will be in Hong Kong and New Zealand. The reply was its all online so from that point if view no problem. There is a weekly webinar which would be on Wednesday but different times to suit people registered from Australia and a chat session on Thursday. All of which you can catch up on if you are not able to log in. So on that basis I have registered. Be great to have you on too. I spoke with the course leader and it is mainly health professionals at the moment so our collective perspectives will be appreciated. As its free there is noting lost but if you continue to do voluntary work it will help you with that too. Hope you are ok. Think about you most days. We need a Newark do in the summer.
User
Posted 10 July 2014 19:59:51(UTC)
Hi Paul,
I think Karen will be interested in this course as well will give her the information when she next visits.
User
Posted 10 July 2014 20:45:58(UTC)
Hi Paul,
Thanks for highlighting this.
I'm signed up and ready to go! :)

Best wishes

Kevin
User
Posted 10 July 2014 21:24:36(UTC)

Paul

I have just registered so will be joining you in this educational programme. I am hoping that I can get some input from Mick's Oncologist as well, he has always told me he would do anything he could to help me progress in my chosen voluntary care. 

Agree we need a get together so will send you a message in the next day or so once I have thought of something we can do.

xx

Mo

User
Posted 11 July 2014 06:55:56(UTC)
May take a look at this. Thanks Paul.
Newark do..... Mo said "....once I have thought of something we could do"

Mo that's a no brainer Pub, drink, eat

What ya reckon Si

Bri
User
Posted 11 July 2014 07:09:37(UTC)
Just registered, thank you, Paul.
User
Posted 11 July 2014 09:31:29(UTC)
Great news with the registrations, I'm sure the course leader will be pleased to get our perspectives!
User
Posted 11 July 2014 12:44:29(UTC)

Just registered Paul,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 July 2014 15:58:28(UTC)
Paul,
Thanks for posting course details. I've registered.
Viv
User
Posted 25 September 2014 10:57:43(UTC)
I cannot believe it's nearly three months since I last commented. But with another check up imminent it feels time to reflect on the past few months.

Firstly I had two months respite from UTIs before they returned about six weeks ago. This time I had two reoccurrences but am now enjoying nearly six weeks since the last time including a stressful trip aboard so feeling quite good. I upped the self catherising to at least three times a day, sometimes four and this may have helped the quicker recovery. I have maintained the increased ISC as it gives me respite from tripping to the loo. I go normally between 3-5 hours after ISC and then I have to pee very regularly. If I am busy or in places where loos are not easy to access this causes problems so I try and predict those situations and catherise accordingly. It's more difficult when I am out and about when I need to access a clean disabled toilet. I have seeking to get a radar key to make this easier.

Secondly my fatigue remains part of everyday life now. I am more conscious of it and have had to plan by work so that rest is built in. Though my colleagues are excellent in allowing me that respite I can be my own worst enemy by taking too much on. This leads me to a point of exhaustion when I simply have to rest. My son is great at spotting this and will warn me to slow down when I am doing too much! I know if I have to add casodex this problem will get worse so I hope next week to avoid this for now. Work remains important to me so I need to protect myself from fatigue so I can continue to enjoy the motivation it gives me.

My overwhelming reflection on the last couple of months relates to the loss of so many good men on this site and beyond. Though this happens all too frequently, wherever we are, when you meet and know such good men it rocks your own confidence and brings your own mortality into focus. As well as Mick, Peter, TopGun, Eric, Neil and Scotwiki I saw a good friend lose his battle for life in under four weeks, the primary Cancer never really identified as it was so advanced. But it also strikes me how uneven Cancer falls and therefore we have to stay positive and grasp what is before us. I have been prilivileged so far to battle for just under three years despite bone met spread with I hope some way to go too. We have seen SI and of course Allister saw huge resilience and these stories, and many others unnamed and those who eventually lost their battle gives me real hope to continue to make the most of my time ahead. I wake most days determined to get the most from the day knowing we are all vulnerable to that 100 percenter, and I will one day lose my own battle for life. I will though continue to strive to maintain and enhance my positive approach to life and use that to help others when I can.

So I am not obsessed about my check up next week but for the first time for a long time I really hope I can get another four month extension. have I a right to ask for that and should I tempt fate! Well what will be will be but I have my daughter,s wedding in three weeks which makes me so proud and I really want to be on top form for that. I am undertaking this online PCa course with Mo, Chilled and others, and I am setting off on seven weeks of work-related travel - Hong Kong, New Zealand and Hong Kong again returning on 14th December for what I hope will be another good Christmas with my dear family. Watch this space!
User
Posted 25 September 2014 22:27:49(UTC)
Paul, glad you are home safe and sound and getting ready for your daughter's wedding. I know the tiredness can be a major problem so rest when you need it and as your son says "slow down a bit"
You may not have to go onto Casodex and if your PSA etc are all still good I doubt your Onco will change anything. I do wish Urology would figure out what is causing so many UTIs though the catheterising in itself must be a worry not to mention an incovenience. Would a longer term catheter reduce the infection risk I know the most recent ones have really discrete day bags and the whole thing only has to be changed about every 8 weeks.
The 6 week course with Bath University is entering week 5, last week was tough but I was quite chuffed when my paper on p53 and VEG-F got the green light. I am not sure how chilled is finding it as he did not comment last week. I just wish it was Pca related so I am looking forward to October 13th when the course with you begins.
I am sure I will see you before your next round of travels sometime after the wedding.
Good luck with everything xxx
Mo
User
Posted 26 September 2014 11:23:57(UTC)

Thanks Mo. On the catheter front I do not want a permanent catheter until or if I have to. I had one in for about six weeks after hospitalisatio , now a couple of years ago and I found sleeping difficult and going out very difficult. It would take some adjusting to have to wear it when out at work etc. I know no one can see them but my experience was that walking with them, catching them and pulling made it a nerve wracking experience. ISC Is quick, painless and means I continue to pee normally in-between so maintaining the capacity. Although there is a risk it's somewhat unspecified and just a vague recognition that keeping everything clean is important. Of course the cause of any infection is actually unknown so it could be other causes. Catching them early with anti biotics means for the moment I am not too inconvenienced.

After the wedding I leave UK on 23rd so may not get chance to meet until Christmas. But will see you online!

User
Posted 26 September 2014 12:14:55(UTC)

Best of luck with your upcoming PSA test Paul, i will be thinking of you.

Just to let you know as of today still no wedding invite after all i have met your daughter, does that not count.

So of you go on your travels again, hopefully we can all meet up before Christmas.

Best of luck mate

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 27 September 2014 08:43:47(UTC)

Paul,

Just to echo Mo and Si, I will be thinking of you next week with everything crossed. What day is it? You are certainly an inspiration to many you have never let this disease and all the UTIs stop you from travelling and working. Maybe as your son say's take it a little slower.  I have also not had an invite, I wondered if it is because I am quite rural and the postman couldn't find me.

Have a wonderful day, what could be better seeing your Daughter married.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 September 2014 11:27:32(UTC)

Thanks guys, it's Friday when I have my appointment. Just three weeks to the wedding. If your invite has not arrived yet you must have missed the cut. I recommended you all to my daughter but she kept insisting on her friends, selfish I know but there you go!

User
Posted 28 September 2014 00:08:41(UTC)

Paul, you obviously had a great time in Hong Kong which probably justifies some weariness. And so much for you to look forward to over the next weeks and months - I can't wait to see some photos.

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


User
Posted 29 September 2014 12:22:57(UTC)

Thanks Lyn. I have never been good at knowing my limitations and have found it hard to realise that with all the impact of the HT I need to pay better attention to it. At times I have got better and recognize in advance when I need to have a break. Gone are late night sessions completing work, pushing extra stuff in and doing it in the evenings. I know I need to relax more. It's hard to describe fatique to someone. If you say you are tired it doesn't really cut it. We all get tired, we rise above tiredness when we have to do something. I find that I cannot rise above fatique when it happens. There is something qualitatively different about it which just signals I have to stop and rest. As most of my work is through my brain it's not a physical problem alone. My brain becomes a little fuzzy and if I am doing a report or an article which needs me to be on my best form I find I simply cannot do it.

Some will say well you are getting older so that is also a factor. Well yes and no. I think the deterioration we get as we age naturally is different. I did not anticipate my thinking skills getting less from age and indeed when I am fully rested I am still as sparky as normal. So I think fatique described a distinct bodily reaction to HT, which is progressive, I feel worse now than I did two years ago and if I don't account for it I come to a standstill anyway, as I did once or twice in Hong Kong. To be honest I hardly got out in HK as between teaching sessions I just rested to avoid this mind numbness!

Hey ho, it keeps me alive for now so I am not complaining but trying to name it so I can plan better for it and hopefully avoid retirement for lots of reasons.

User
Posted 30 September 2014 10:48:36(UTC)

I would welcome some comments on a dilemma in my mind. Hitherto my prime consultant has been a urologist even though there is a MDT behind him. I have valued his advice and counsel and felt that he has made the right decisions for me as we have gone along. I am still here and relatively well nearly three years on from advanced metatastic PCa. I reported on my last check up how he resisted the temptation to start casodex partly following a discussion about my work. So I have no complaints at all about his management of my PCa.

However I understand he has or is moving to another job. (Not been told this directly but a reliable source, well Brian Isaac, 😃 has given me the heads up). My appointment this Friday could therefore be with someone else.

So my question is this?

Should I seek now to be handled by an oncologist on the team rather than another urologist?

What are the pros and cons of this?

I had been thinking of raising this anyway as treatments down the road will be delivered through oncology - chemo, Abby etc etc

So should I insist on a change? Can I insist on a change?

Advice would be welcome, thanks!

User
Posted 30 September 2014 14:36:15(UTC)

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


Thanked 1 time
User
Posted 30 September 2014 14:41:15(UTC)

Yes I think that would be ideal though have no knowledge of who my new uro will be yet and will need to rebuild trust as I liked my present one. Also don't know who the onco is and whether they have expertise in PCa. It's unsettling for me to have to change doctors I prefer familiarity but I think keeping with the uro for the UTI and catheter stuff is a good call.

 
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