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Ever Decreasing Circles part three

User
Posted 30 Dec 2014 at 10:25
I have decided to move my thread from the newly named 'End of Life Issues' into this conversation. I was happy being in a thread called 'Dying from Prostate cancer' as it had the merit of being clear and descriptive of my situation but as my personal progress is at the moment surviving with first line hormone treatment I was more uncomfortable in 'end of life issues' so I have decided to start this thread in a new place. For those interested in my previous thread it can be found at http://community.prostatecanceruk.org/posts/t9778-More-Ever-Decreasing-Circles#post118200 or my original thread is in the archives and could be accessed at http://community.prostatecanceruk.org/posts/t9555-Paul-s-ever-decreasing-circles#post9555.

TO REVIEW MY JOURNEY SO FAR:

So at the cusp of the new year I find myself awaiting my latest PSA results on 2nd January wondering whether this will be the year I start that reluctant journey towards second and third line treatments. I was diagnosed nearly three years ago with bone met spread but I have so far managed to continue successfully on hormone treatment, prostap to be precise. I have had a continual problem with urinary tract infections and partial urine retention (I self catherise three times a day at least) but at the moment I am enjoying a period free of UTIs as at my last appointment in October the consultant started me on a prophylactic dose of anti biotics which has kept infections away since. Whilst I have been travelling abroad for work in the last eight weeks I have felt energised and well. I am sure the relief from UTIs has made a difference! Whether it makes a difference to my PSA I shall find out this Friday!

Three years on HT has been good to me though side effects have mounted. I am lucky not to have suffered hot flushes but I suffer more and more from fatique though am still working as long as I manage periods of tiredness. My work colleagues have been great at recognising this and being supportive. Of course I have the obvious side effect of no libido and no sexual functioning but the two combined means it gives me a sense of calm which actually makes life easier to deal with.

So for those new to my journey this brings you up to date with the illness and my progress. But the real benefit for me of the past three years and despite the realities of all this I do believe it is a benefit, is the sense of life and living I have experienced. I spent a lot of time early on talking, reflecting and thinking about death and dying. This has helped me come to terms with that and my past threads document some of my reflections. I did not expect still to be here yet somehow I am, still reasonably well, still working, still enjoying life and still looking for new experiences and new memories. This year may see me progress down the treatment hierarchy towards chemo and beyond but I do so, learning from everyone here and from the courageous journeys of such wonderful characters as Mick and Barry (TopGun) and before them Ben (Nimenton) and the many others, too many to name but never forgotten, who have succumbed in the last three years. As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me.

I wish everyone a happy new year wherever you are in the course of treatment or in support of those suffering from PCa. There will be good times and bad times this year but with the support of this wonderful forum we can cope with this together! happy New Year.

User
Posted 30 Dec 2014 at 10:25
I have decided to move my thread from the newly named 'End of Life Issues' into this conversation. I was happy being in a thread called 'Dying from Prostate cancer' as it had the merit of being clear and descriptive of my situation but as my personal progress is at the moment surviving with first line hormone treatment I was more uncomfortable in 'end of life issues' so I have decided to start this thread in a new place. For those interested in my previous thread it can be found at http://community.prostatecanceruk.org/posts/t9778-More-Ever-Decreasing-Circles#post118200 or my original thread is in the archives and could be accessed at http://community.prostatecanceruk.org/posts/t9555-Paul-s-ever-decreasing-circles#post9555.

TO REVIEW MY JOURNEY SO FAR:

So at the cusp of the new year I find myself awaiting my latest PSA results on 2nd January wondering whether this will be the year I start that reluctant journey towards second and third line treatments. I was diagnosed nearly three years ago with bone met spread but I have so far managed to continue successfully on hormone treatment, prostap to be precise. I have had a continual problem with urinary tract infections and partial urine retention (I self catherise three times a day at least) but at the moment I am enjoying a period free of UTIs as at my last appointment in October the consultant started me on a prophylactic dose of anti biotics which has kept infections away since. Whilst I have been travelling abroad for work in the last eight weeks I have felt energised and well. I am sure the relief from UTIs has made a difference! Whether it makes a difference to my PSA I shall find out this Friday!

Three years on HT has been good to me though side effects have mounted. I am lucky not to have suffered hot flushes but I suffer more and more from fatique though am still working as long as I manage periods of tiredness. My work colleagues have been great at recognising this and being supportive. Of course I have the obvious side effect of no libido and no sexual functioning but the two combined means it gives me a sense of calm which actually makes life easier to deal with.

So for those new to my journey this brings you up to date with the illness and my progress. But the real benefit for me of the past three years and despite the realities of all this I do believe it is a benefit, is the sense of life and living I have experienced. I spent a lot of time early on talking, reflecting and thinking about death and dying. This has helped me come to terms with that and my past threads document some of my reflections. I did not expect still to be here yet somehow I am, still reasonably well, still working, still enjoying life and still looking for new experiences and new memories. This year may see me progress down the treatment hierarchy towards chemo and beyond but I do so, learning from everyone here and from the courageous journeys of such wonderful characters as Mick and Barry (TopGun) and before them Ben (Nimenton) and the many others, too many to name but never forgotten, who have succumbed in the last three years. As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me.

I wish everyone a happy new year wherever you are in the course of treatment or in support of those suffering from PCa. There will be good times and bad times this year but with the support of this wonderful forum we can cope with this together! happy New Year.

User
Posted 14 Feb 2016 at 10:02

When I was finally diagnosed with incurable PCa I first told my two children. They had known the cancer diagnosis but we had been hopeful after a CT Scan that it would be on the cureable side. This was abruptly ended when the bone scan revealed bone mets in a number of places. My daughter, naturally upset, confused, angry, came up from London that same evening. The following day I was due to take my son to a wedding reception. I suggested to my daughter that we find a restaurant near to the reception and enjoy a relaxed meal and chat. This was the first visit to a little place in Humberside, Barton upon Humber. We had a lovely meal, shared emerging thoughts about the future, cried, and began the process of getting our collective head around what faced us. I said that night we should return here once a year to mark the passage of time, not knowing how many I could achieve as the prognosis had been 18months to 2 years.

Last night the three of us returned to Barton for the fifth time, celebrating four years survival, enjoying probably our best meal ever and still here, still battling, still living. It also marked the end of the worst couple of weeks I have experienced, the tumour flare, now definitively in remission, just normal aches, pains and tiredness. I hope I can build up my resilience once again.

So four years on and still counting. I have said before I am not under any illusions that this will last forever. I know my circles are decreasing and I know too what Bazza calls the uncertain certainty of the end game will arrive one day. But each year I have a dinner date to remind me I am still going strong and as long as we can we will book our annual dinner, always around Valentines, always in Barton, always at Elio's, to mark the passage of time, the accumulated memories of another year. I am glad of two things here, the restaurant remains open (it is a most inconvenient journey of about one hour from home but it's just fate) and it serves good food, fancy revisiting a place where the food was poor! Appropriately valentines as I am with the two loves of my life, my two children!

Have a good day everyone!

User
Posted 23 Jan 2018 at 11:28

Ok time for an update. For those reading for the first time a brief, hopefully positive summary. It is now 6 years since I was diagnosed. Firstly PSA 7.5; Gleason 9 (5+4) and CT Scan showed no soft tissue spread. In February 2012 a promising curable prognosis was changed when my bone scan revealed bone metastestes. Incurable prognosis and an intitial prognosis of two years. This always seemed a tad pessimistic and six years on feel I may still have a year or two left. You can see the range of treatments I have had on my profile.

So oncology appointment today. Been on enzalutimide for about 9 months now and clinically it feels good. However PSA has risen each check up though a slow rate. This time up to 10.83 so approaching the baseline of 11.98. Onco keen though not to ignore the clinical progress and for the first time said he would try and keep me on enzalutimide beyond the baseline of clinically progress is maintained. Good to hear. Have upped dexamethosone since last visit to support keeping PSA down. Now proposing in 4 weeks to add zometa/zoledronic acid into the mix. This could support my bones and I know lots of people have this. No experience of it so we shall see how it goes.

Overall some encouragement I think and the journey continues. I do get quite tired and my walking is poor but tiredness does not lead to as much ‘fuzzy headiness’ I am experienced before and with my scooter I am hoping to stay well enough to enjoy ‘scooting’,around this summer.

So I hope an optimistic report for those starting their journey especially but also friends on here.

User
Posted 18 May 2016 at 13:46

In case anyone is interested I was interviewed on BBC Radio Sheffield today talking about. 'My life so far'. This was a general interview around my retirement from the university but did focus on my cancer quite a bit. Anyway it can be found here at 2 hours 10 minutes in and lasts for about 15 minutes. http://www.bbc.co.uk/programmes/p03tpnf7#play Let me know if the link does not work.

User
Posted 05 May 2016 at 14:33

Thanks to everyone for their kind words. I am not banking on this being a long respite though it is now four months ago since enzo was first on the table. Any delay before the next drug increases life expectancy so I am not complaining. I suspect, Lyn, whether it is delayed reaction to ending casodex or steroid or both neither are long term solutions. But if I get another eight weeks feeling like this I will settle for that first and deal with the aftermath when it occurs.

A very close friend of mine has just been diagnosed with advanced metatastic PCa with bone mets but no soft tissue spread and he has started immediately on chemo. Such a different route for new starters now. I still have that delight to look forward to at some point.

The simple fact is its nearly four and a half years ago this all started and by focusing on my life and living it to the full I let the disease take care of itself. I will let me doctors look after treatments, I will look after my retirement pursuits, seems a good division of labour.

User
Posted 02 Sep 2019 at 21:35

Yorkhull's friends here may like to know that the latest edition of Probation Quarterly is dedicated to his memory and has some wonderful recollections and testimonials as well as a repeat of an article he wrote last year when he stood down as the Chair of the Probation Institute as his cancer progressed.

His approach to his incurable diagnosis, his thoughtful and thought-provoking posts give members of PCUK a good insight into his values and commitment to his profession and the difference that can be made to people's lives if resourced properly.

I am proud to count him as a friend.

http://probation-institute.org/wp-content/uploads/2019/09/PQ13-final.pdf

 

Edited by member 02 Sep 2019 at 21:36  | Reason: to activate link

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

User
Posted 20 Dec 2016 at 14:35

So, if I can, let me spread a little bit of Christmas cheer. I have now completed a year on what was going to be a temporary measure before I started to take enzalutamide. Many people will know I was given a steroid called dexamethasone. This was to help me through into retirement. And yet again at today's appointment my PSA has gone down to 3.74, this is from 59 at the beginning of the year. No appointment for another three months, a minor triumph in procrastination. The battle goes on and so after five years I am still here and resisting this advanced metatastic prostate cancer. I for one will enjoy my Christmas on this basis.

That is not to say that the last few weeks have not being difficult for other health reasons. I had a nasty fall about three weeks ago which brought me bad bruising on the left side of my body. This restricted my movements, painful in the day and at night. I don't think I cracked a rib but anyway I just had pain relief which would have been the same even if I had. In the last week it has started to ease and I'm beginning to feel okay again.

I had got this improvement just in time for my colonoscopy. The preparation for this is pretty gruesome and Saturday found me spending most of the time on the loo it took me four hours to watch Strictly as I kept having to pause and dash. The procedure itself went okay and they didn't find anything untoward so for now unless biopsies show any difference I seem to have got irritable bowel syndrome as a result of the compilobacter infection I had earlier in the year but nothing more serious. This could go on for at least the next 12 months but using Imodium I can keep it reasonably in check.

My visit to my diabetes consultant, my third new person in the past year resulted in a rise in my Blood sugars necessitating a change of treatment. I have not yet reached insulin but I am now on an injectable treatment as well as other tablets. I suspect with the steroids and HT this messes with my diabetes and at some point I will be insulin bound. At least at that point I will be able to exert more control over it.

So it's been a hectic few weeks but concluding with the best news of all that the cancer for now is behaving itself. I have all the usual effects of five years of treatment, a lot of fatigue, a lot of aches and pains but much less pronounced than 12 months ago because of the positive effects of the steroid, restrictive walking which shows no sign of improvement, but hey I've had a much better 12 months than the previous 12 months and so I'm going to enjoy Christmas and hope you all do too.

Let's look forward to good 2017 and year 6 of this journey.

User
Posted 12 Dec 2017 at 12:50

Ok some six weeks on and some ‘partial’ good news. My PSA Up again to 9.34 a rise of just over 1. It is still working towards the baseline start for enzalutimide (11.98) which is now not far away. But CT scan shows no change and pain in right leg is clearly reduced under enzalutimide so clinically I am feeling reasonable, given the stage of my disease so that has given me six more weeks on enzalutimide.

Now the oncologist is keen to see a drop in the PSA, as I have theorised I suspect he would be under nhs pressure to stop at the baseline figure. Anyway he has doubled my steroid dose back to what it was last year which resulted in a PSA drop for a year so hoping it will impact on the PSA. Plus I get to enjoy my food for Christmas! He is also talking of Radium 223 next, so still uncertain times.

So the journey continues, stuttering a little, but given the terrible losses on the forum these last few weeks, I feel lucky to be still here and on this uncertain journey. So another Christmas will be enjoyed and for that I can feel good.

User
Posted 01 Apr 2018 at 18:14

I blog on a regular basis but thought this blog might be of interest for some struggling with dying and death. Anyway be good to hear any thoughts.

https://yorkhull.wordpress.com/2018/04/01/you-start-dying-slowly/

Click here

Edited by member 01 Apr 2018 at 18:15  | Reason: Not specified

User
Posted 10 Mar 2015 at 08:57

Thanks everyone for your kind wishes. This is an unexpected bonus and hopefully I will get a few months even a year's grace before the circles close in any more. For now I can look forward to a few months ahead, hope the UTIs stay away, and then Mill on the Soar.

I do feel very positive about this, as though Cancer can strike us down quickly and unrelentingly, it can also give us chance to breathe, take stock and focus our life. I am still here over three years on from diagnosis, that feels lucky and I am grateful for the time. To me I am enjoying that bonus of living and intend to keep smiling and getting the most from it. If Top Gun had not already said it Life is for Living!

Edited by member 10 Mar 2015 at 08:58  | Reason: Not specified

User
Posted 04 Aug 2017 at 00:11

You are right Allison. I am in my sixth year, John is in his seventh so we can celebrate that resistance, despite the problems. Si and Trevor are over four/five years (I think) yet we are all travelling together. Some days I think life will go on for a while, sometimes I am less confident of that. Most days, I wake up, check I'm still here and still functioning and make the most of it and when that day is a bad one I do less and look forward to waking up again knowing that there will be quite a few good days.

To all of us suffering from bony mets let's go as far as we can. As Top Gun would have said 'life is for living'

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 20 Jan 2015 at 14:19

I shall be having a whopping slab of fruit cake to celebrate your news !!

 

Fiona. x

User
Posted 04 Mar 2015 at 00:34

Lovely post Paul on how you deal with PSA angst , I think this is really helpful for newly diagnosed although we all different and how we deal with life in general is so very different. There was an old guy on this forum that used to say Life is for Living http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif how very true.  That still leaves the question how do you live your life with the big C on your shoulder. I can only answer that from my perspective in the begining  every moment of every day was terrifying let alone waiting for psa results. It consumed every waking moment. 

As time has gone by I have to agree with Paul on the day it is that knee trembling here we go again moment but in between there is so much we need to accomplish and it's not a huge bucket list but just day to day living , again the same as Paul there isn't any room for Cancer in our lives we are far too busy getting on with life. Some day we will have to stop and open the door but for know we will keep going just the way we are.

So in the words of the song and you all know I love a good sing a long 

Que Sera , Sera 

What ever will be will be.

The futures not our's to see

Que Sera , Sera

BFN

JULIE X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Mar 2015 at 09:37
The question I would like to ask is who is posting under Bri name, and what have you done with him?

Roy

User
Posted 02 May 2015 at 17:14

Good to hear things improving Paul. Have a great birthday.

Re Julies request and Chris's request perhaps you could kill two birds with one stone....you will get banned from FB of course and maybe lose your job lol

Take care
Bri

User
Posted 24 Dec 2015 at 10:52

I just want to offer a little about my way of coping. I blogged to my close friends in a private blog I have kept since this all started. I wanted to share that with you as a contribution to 'ways of thinking' about this disease. Here it is........................

It was a fascinating day just a couple of days before Xmas and just about four years on from my original diagnosis. Although it started with a bit of a jolt. My journey is clear, which overall I accept or at least have become accustomed to, even if the time it will take is unpredictable. The uncertainty of the certainty gives plenty of scope for living and this has already given me four very good years. So when the oncologist reported a rise, a spike, in my PSA, whilst disappointed, I did think well this was not unexpected. I had gone a year since the last spike and in that time the additional drug I was given from last January did its job and kept my PSA stable for a year, longer than average for that drug as my onco mentioned today. So yes that journey is over but the boy done good! In five weeks time after a precautionary CT Scan to check if there has been any soft tissue development I will start a newer more heavy duty drug called enzalutimide. My journey continues.

I have used the image of 'ever decreasing circles' as my strapline. I think it acts as a metaphor for my life, maybe for anyone's life. We start life with horizons broad and options many. As we make life choices those options begin to narrow though plenty of scope remains if our life is reasonably successful. This analogy works too for those whose life options are less malleable as their circles sadly decrease more rapidly. The timing of change, the next circle is difficult to determine. We do not get a rehearsal in life so cannot go back and tweak the journey to our own prescription. Each circle is experienced anew with all its unpredictably, naivety, hope and expectation. Even as a young child the fact is that death will be the ultimate outcome even though we cannot imagine it unless misfortune intervenes. As adults we struggle to imagine it too and many have this sense of immortality because it can be intellectually challenging to imagine non-existence. We can do it logically but not through the senses. I find that the image of decreasing circles allows possibilities of moving on as well as restrictions. Sure the circles will reduce and each failure of treatment leads only one way. But on that way we can have lots of fulfilling times. I choose to enjoy my survival and not focus on the regret the decrease in my life circles might engender.

So after getting the news and letting people know and receiving some lovely and kind thoughts from my dear friends and family and especially on the forum I spent the day completing a project I have been working on for a few weeks now. I was inspired by one of the Man Booker shortlist books to sort out my disused and frankly depressing study to get it back in shape. The passage which influenced me was from Tom McCarthy's Satin Island.

I decided that I needed to recreate a space for me to get back to my writing. I had been too busy doing other things that I had ignored my novel. So after my onco meeting I went with my son and we collected my books from work, over 500 and I brought them home and we set about filling the bookcases, tidying, clearing and generally finishing a job we had started five or six weeks ago. The study in my house is now fully restored. I sat down and found myself almost feeling euphoric with this final effort and the result. The whole day had gone quickly and the ideas for the future use of the room had stayed uppermost in my mind. Each circle has possibilities if you seek them out even if they have boundaries!

Today could have been such a s*** day but I knew my circles would decrease and so that happened whilst another circle was opened. I can celebrate four years of survival and do not need to count the future time. It will take care of itself. The circles will continue to narrow and eventually end of life will be reached. I feel happy that i can understand this process without rancour or regret and be able for now to live with it and enjoy my life. I will enjoy Christmas and new year and look forward to trying to ensure that 2016 is not my last circle. After all it's just as feasible that the new drug will last a year or more and whatever is waiting in future circles will grant me more time. Nobody knows the pathway for certain as it is a once only journey but one I am happy to be on! Happy Christmas to all!

User
Posted 09 Jan 2016 at 08:27

It seems that not only are you incredibly clever Paul , but you have the "allure" as Miranda's little pal says. Your oozing it. The girls will be fighting over you soon. :-))
Chris

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2016 at 22:44
Originally Posted by: Online Community Member

It seems that not only are you incredibly clever Paul , but you have the "allure" as Miranda's little pal says. Your oozing it. The girls will be fighting over you soon. :-))
Chris

Chris

you have to meet Paul and get to know the amazing man he is, clever, witty, humble, charming and a truly amazing humanitarian. I am sure Lyn, Julie,Ness and any number of other members on this forum male and female would agree.

Us Ladies would not fight over him but believe you me we would fight for him every step of the way.

xxx

Mo

User
Posted 28 Jan 2016 at 00:40
I have been trying to post all day for you Paul but PCUK would just not load for me so in times of Internet trouble I seek my eldest son 16 to help me out but these teenagers are just so inconsiderate ( he had been to see his girlfriend) not realising his mother was in urgent need of him.

Conversation went some thing like this on his return from said girlfriend.

James wake up I can't get PCUK to load for me

Eeeerhhhhhh

Repeat of above

Eeeeerhhhhhhhhh

Repeat of above

Mum I am asleep

I know darling but this is important

I then hand him said iPad.

Click, click, click

Mum you are on Safari

First thought was OH my he is has been on the juice

No Darling I am in your bedroom

Mum you are on Safari

Oh am I ( I thought it was best to humour Him at this point)

Mum you have clicked safari , I told you don't keep clicking on things

Ok I promise I won't But am I back from safari🙃

So any way it has taken all day but here I am

Not such good news on the PSA but and I always stress the buts Trevor had a huge fall in PSA when he stopped Cassodex and it was 8 or 9 mths before he started Abbi. Your scan results are brilliant so my friend onwards and upwards . We live to fight another day and those circles are still circling around.

Lots of love

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2016 at 18:30

Hi Paul
Although you must be worried about progression and its effects your post truly showed hope and a sense of personal relief for you. I want it to last for you forever. Your courage and calm inspires me. Have a good weekend
Chris

If life gives you lemons , then make lemonade

User
Posted 26 Aug 2016 at 19:12

Thanks everyone for your lovely thoughts. Sorry I've not replied earlier but I left my iPad at home and have had no real access to the site. Back home from Scarborough after a lovely few days cricket and looking forward to the next few weeks. Thanks again!

User
Posted 06 Apr 2017 at 00:36
This page turning hicup is certainly a pain

A little like you have slipped down a drain

It's massively annoying and incredibly a strain

I keep turning the page with howls of not again

For us oldies we know we are in page not found

For newbies it must be like a merry go round

come on PCUK I'll give you a pound

Please sort it out because my minds not sound

It's a no mans land , a Bermuda Triangle

I can't believe there isn't a handle

Come on guys we invented the mangle ( getting desperate know 😆)

i think it's just a wire in a tangle

I'm not in IT and can't offer advice

But I usually find unplugging it once and then kicking it twice

This has an amazing affect and sorts it Just Nice

If that doesn't work then you need to call the Help Line number I think it begins with an 08 number.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 May 2017 at 19:50

Originally Posted by: Online Community Member

Slight concern from onco about some patients having had neurological issues with enzo, thought he admitted this was a small number and not heard it on here. (Anyone heard about this?).

I remember being warned that there was a very low chance of seizures in the first few weeks of taking Enzo and that should they occur it was a 999 situation. It was detailed in the side effects listed in the leaflet enclosed with the Enzo tabs.

Edited by member 09 May 2017 at 19:57  | Reason: Not specified

User
Posted 11 May 2017 at 02:07

Ah love - not entirely unexpected but a disappointing marker that the journey is progressing, all the same. I hope that Healey is right and it dries you up a bit - that would be some consolation at least!

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

User
Posted 28 May 2017 at 14:37

Just a quick update. Started enzo this week so not time for side effects yet and a few weeks before we see if it is helping. Also had my PIP assessment this week, which went ok just have to await the outcome; 6/8 weeks!

Lost a dear friend to PCa this week plus the horror of Manchester. This can challenge your faith but I blog every week and have tried to make sense of it. You may be interested.

https://yorkhull.wordpress.com/2017/05/28/in-memoriam-kw/

User
Posted 27 Jun 2017 at 22:03

A bit of good news after five weeks on enzalutimide. My PSA has halved from 11.98 to 5.7. Great start and got another six weeks to see that the trend continues. No major side effects and hoping some of the pain begins to ease a bit. Onco talked of more palliative radiotherapy but not sure about that yet. Still will see if I can manage without the extra pain killers as the drug hopefully reduces some of the bony mets.

For now a little bit of joy but still feeling for Trevor and Julie's struggle but decided a bit of good news cannot hurt.

User
Posted 28 Jun 2017 at 22:22
Fantastic news Paul your news has really picked me up .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Sep 2017 at 12:30

Thanks Lyn and ColU. I shall get on with my life and hope that the counter-attack of enzalutimide starts in my next check up. I shall as I usually am, remain positive. I suppose there was a mismatch between my expectations in my head and what they said. I should not over-think this. I’m feeling better already.

At last tomorrow I get my car with hoist and scooter attached. This will give me so much freedom to get out and enjoy the day. Want to rediscover the ‘walking’ world rather lost to me over past few years.

User
Posted 13 Dec 2017 at 20:25
This has nothing to do with PCA .

I am just watching Masterchief the Proffesional and the Narrator sounds just like you , a kind of sexy Mr Kipling 😉

The chocolate mousse must be served warm with a slice of coconut twist and a budgie Bon Bon , finished of with a quinell of asparagus ice cream .

So just a slice of Raduim will be a doddle .

Once again XMas is here enjoy with your family my dear friend and enjoy a quinell or two on me .

Oh chuck in a few salted caramel fudge twists . 😜

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Mar 2018 at 13:26

So woke up this morning after 12 hours sleep (admittedly in two hour shifts but that is normal for me) and no noticeable adverse side effects from the Zometa this time. Thus time 4 weeks ago I was stranded in bed feeling very ill but I was told this would lessen or disappear and it appears to have disappeared. Will take it careful for a few days but it’s encouraging. Just need to build up strength again. Good start to the day.

Thanks for all the best wishes.

User
Posted 01 Apr 2018 at 22:35
I read your blog Paul.

I relate to so much of it. Since my diagnosis and recurrence I try to live my life as full as I can.

Reading, trying new things, travelling to new places, spending more time with my family and friends.

And trying to accept that I will die at some point. Probably a lot earlier than if it didn’t don’t ha e PC.

A friend and ex colleague of mine died in January aged 63, she had several heart attacks on 2/1/18. A stent was fitted to a blocked artery and a few days later she was sent home, elated that she had survived and ready to travel more, work less.

Unfortunately when she got home she sat in a chair and immediately had several more heart attacks from which she never recovered. At her funeral on 29/1 her son spoke of her saying to her husband “it’s time to stop working and enjoying life more”

People don’t realise the time to live is now, not when I reach this or that. You may never reach that point.

Much of the poem and what you say resonates with me.

Thank you for sharing your blog Paul.

Ian.

Ido4

User
Posted 17 Apr 2018 at 20:19

One more good summer, and one more memory trip with the kids, then one more Christmas - I hope the one mores just keep coming, my friend x

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

User
Posted 15 Jul 2018 at 21:05

... & thank you also to Ian, Kevin & countless others who share this awful illness but who give us strength and a positiveness to see it through with fortitude. Thank you all ... 

 

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 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 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 30 Dec 2014 at 12:37
Paul

what a great idea moving out of the dying from section, your acceptance of the fact that you probably will (course there is always a slight chance something else will come along and take you) is plenty for now you can return there when you feel it is appropriate, hopefully a very long time away. Meantime you are very much living with prostate cancer. Your mental and emotional journey so far has been superbly documented, honesty, reality and calm reflection are your forte, sometimes not understood or appreciated. I have got to know you fairly well over the last 18 months meeting up with the gang, going to functions and chatting on here or facebook with you regularly. Not cancer related stuff but the joy of family weddings, travelling to lovely places, photography and the happiness that can bring to mention just a few topics.. I love that you can talk and write so eloquently but more importantly you listen a quality which escapes some who occasionally get carried away and are more interested in what they have to say than what they can learn from by listening and absorbing.

I doubt a day goes by now that I do not think of you and all the other friends I have made through this forum and our commonality with PCa. I know everything I have experienced, read, heard, been taught and thought about in the last 18 months have made me a stronger and better person.

I hope you and your family have a wonderful and prosperous New Year

xx

Mandy Mo

User
Posted 02 Jan 2015 at 15:29

January bash? More info???

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

User
Posted 02 Jan 2015 at 17:13

Well after three years my CIRCLES just got a little smaller. Had my appointment today, met a new uro who confirmed that my PSA had now risen to 42 and the threatened casodex (50g) starts from tomorrow. It was a bit of a jolt at first as I had been to eight successive appointments in three years and, despite the ups and downs, treatment had continued unchanged. Now I am starting down the road a bit it was a shock though I had half expected it. My main worry relates to the additional side effects and having avoided hot flushes so far whether they might now rear their head or that my level of fatigue might increase impacting on my work. Still I guess I have to suck it and see!

Interestingly this new guy went on to say if/when casodex fails I would move onto aberiterone next not chemo which I had anticipated. It was his view that this is now the preferred approach? Not sure, any views? Anyway he has also referred me to the oncologist so I will pick that up with her when that appointment comes through.

I find it unsettling to have another uro, my third in three successive consultations, and I am unsure of my new one, simply because I don't really know him and his ideas seem to take a different path.

Anyway there it is, life moves forward and in 2015 looks like it will be a bit more complicated for me.

User
Posted 03 Jan 2015 at 21:49
Paul

I am a ittle sad to see that you have to have casodex added to the mix, as you know MIck could not get along with it at all it made him like a teenage girl with PMT as well as tired and much worse muscle aches. Having said that it is almost certain he was hormone resistant from the get go so adding Casodex just did not help it was just another drug to blame for the myriad of side effects he was having at the time. You will know quite quickly if you do not take to it well and at least there are lots of other options. Judging by this site many more men have a good response to it than those that do not.

As for Abbi before chemo, if the Oncologist agrees (when you see her) and if casodex does not do the trick which I think it probably will for you, then I would go down that route. Chemo is more likely to affect your abilty to work and would definitey prevent you travelling during the treatment.

I am finally back at home and about to post a new thread re the Newark get togehter, first I want to ring Julie so it may be late when i do post.

looking at second weekend in February.

xxx

Mandy Mo

User
Posted 03 Jan 2015 at 23:07

Thank you, Paul. Your post meant a lot to me.

Best regards,
Lawrence

"I am not young enough to know everything."

Oscar Wilde

User
Posted 04 Jan 2015 at 12:05

John hated the casodex enough to stop early but was in a very different situation to you and I suspect the side effects that he struggled so much with have already become your new 'normal' Paul. As far as I can remember from past members, adding casodex to existing HT tended to show itself as an increase in breathlessness rather than anything else.

Who goes to your appointments with you? Do you want Mo and I to come along to intimidate the uro for you?

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

User
Posted 04 Jan 2015 at 13:41
Ha Paul that would be some shock for your Uro/onco xxx
User
Posted 04 Jan 2015 at 13:47

Formidable 😬

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

User
Posted 20 Jan 2015 at 11:26

GOOD NEWS DAY!! I had my routine diabetes appointment today which unfortunately showed another rise to 59 so I was despatched to the dietician for a lecture on healthy eating. Although when she weighed me I had lost half a stone since I had last been there so I put her on the back foot. All my other measures were fine!

So my wonderful consultant always takes an interest in my PCa and has a PSA test done alongside his tests. It was just 13 days since starting casodex so I was hoping that the rise might have begun to slow down or stop. What a surprise to learn it had gone from 42.87 down to 22.67, almost halving in less than two weeks. I feel like having a double portion of salad for lunch! Six more weeks before I go back to my uro so hopefully this trend might continue. Not bad outcome though!

User
Posted 20 Jan 2015 at 11:52

Great news Paul,

Now you mention the salad after i forced http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif you to eat a roast lamb Sunday dinner.

Salad it is next time.

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Jan 2015 at 11:54

Really Great News Paul,

Hope it continues.

Best Wishes

Steve

User
Posted 20 Jan 2015 at 12:27

Excellent. Keep it up!

Stay Calm And Carry On.
User
Posted 20 Jan 2015 at 12:31

Brilliant Paul...I will raise a glass of slimline tonic for you ;-)

Now the challenge is too get it lower than your starting PSA at dx

Bri

User
Posted 20 Jan 2015 at 12:33
Very good to hear Paul, keep it up xx
User
Posted 20 Jan 2015 at 12:43

Brilliant news Paul, Trevor did very well on the Casodex bearing in mind his high starting point at 13000 going down to 15 so if it works like that for you and it looks like it might then you should be in the 0000 before you no it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2015 at 12:51
Brilliant news Paul. I added Casodex to the mix a month ago and also enjoyed seeing an 83% decline in PSA. Long may all therapy permutations help each one of us!

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 21 Jan 2015 at 10:10

Paul,

For whatever the reason long may the good days continue.

Ray

User
Posted 21 Jan 2015 at 18:13

Glad it's going well for you Paul. Long may it continue

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Mar 2015 at 16:03

So pleased for you Yorkhull.
Long may it continue
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Mar 2015 at 16:23

Lovely news on the psa front Paul lets hope that the UTI's behave for you and you get at least another 6mths grace. It's also good that the side affects have been minimal .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Mar 2015 at 16:47
Paul

I am really happy for you the result was good despite the UTI my instincts were not that worng after all.

I will be sending you a PM in a bit as one or two things for me to start organising before I go overseas.

xx

Mo

User
Posted 09 Mar 2015 at 18:13

Paul, I am so happy to se your update - something for us to celebrate at MOTS xxx

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

User
Posted 09 Mar 2015 at 18:36

Excellent news Paul....and great to hear any side effects can be tolerated

Bri

User
Posted 09 Mar 2015 at 19:11
Absolutely delighted to read this update Paul, it just goes to show you can never tell about treatments, Casodex didn't work for John but Stillbestrill has worked for about 18 months. Excellent news, hoping the downward path continues.

Love Allison

User
Posted 09 Mar 2015 at 20:17
Hi Paul,

just read your thread and profile, it's lovely to read reports of continued response to treatment. Hope uti symptoms are settling, cranberry juice is supposed to be a good prophylactic treatment for uring infections.

Wishing you well with your treatment regime.

Lesley

User
Posted 10 Mar 2015 at 09:30

Excellent news for you Paul. :-)

dave

User
Posted 10 Mar 2015 at 10:03

Keep it up, Paul. Your successes give hope to those not in the cure camp.

Best wishes.

Paul

Stay Calm And Carry On.
User
Posted 10 Mar 2015 at 11:54

Good news in your update Paul.. I like your site name.. It is kinda true for everyone. I agree sometimes a life changing thing like Cancer can give a renewed focus on living well.. Cheers Georgina

User
Posted 10 Mar 2015 at 14:17
So glad that things are good for you , there is hope for us all, I saw a film with my kids a few years back called Kung Fu Panda, not great apart from the lines, yesterday is history, tomorrow is a mystery but today is a present and is a gift ( or something like that!). Like you Paul, I am learning to use that gift the best way I can every day.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 10 Mar 2015 at 21:29

Thanks agin everyone.

Look forward to meeting you Kev at Mill on the Soar when there will be plenty of time to chat!

User
Posted 12 Mar 2015 at 17:55

Great news Paul,

it might have gone a long way that you took some Nottinghamshire Casodex http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Looking forward to catching up with you soon

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Apr 2015 at 20:55

I thought this was already known Paul. Seems pretty obvious to me and I am sure we had a member on IHT who was told that deciding when to go back onto HT depended on the urinary symptoms as much as the PSA. Was it TG perhaps?

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

User
Posted 14 Apr 2015 at 21:21

Hi Paul,

I don't think that you are talking nonsense at all , it makes perfect sense to me . I can see the reasoning and yes I do think it was Top Gun that brought this up.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Apr 2015 at 21:50

It sounds like a distinct correlation to me. As the tumour shrinks the pressure is removed from the urethra.
Having said that a return of the retention could also be due to the Prostate increasing in size as it can with age.

Bri

User
Posted 14 Apr 2015 at 22:51
Great to hear of the improvement Paul, I must admit that I put John's recent issues with hesitancy, urgency and pain higher up down to a growing prostate. As his stillbestrill is failing his symptoms have become more evident. I think it correlates well.

Love Allison

User
Posted 24 Apr 2015 at 18:34

Sorry to hear this Paul. PSA dropping chances are it is muscular as you suggest. Could it be a side effect of the casodex?

Hopefully the pain will start to ease off over the weekend. Perhaps a jaunt up the A1 to West Yorkshire to cheer you up or maybe not depending on the score

Bri

Edited by member 24 Apr 2015 at 18:35  | Reason: Not specified

User
Posted 24 Apr 2015 at 19:48

Hi Paul,

So you have escaped A&E good for you I am glad to hear it's not a DVD that would have been very unpleasant http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. I think when any new symptom arises it is very hard not to think that it is PC related especially for those of with us mets.  I know I always try and keep the sensible side of my brain (no wise cracks guys) to the front and then the what IF side takes over. 

I am wondering if the low mood could be side affects , Trevor is in much better spirits since stopping the Bicalutamide. 

Rest up enjoy the weekend and come back fighting.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Apr 2015 at 18:15

Paul

Hope your treatment shows quick results. Good to see players from Yorks and Lancs doing England proud.

Paul

Stay Calm And Carry On.
User
Posted 01 Jun 2015 at 23:32

Wow, I go out to a meeting after posting my message and come back to many wonderfully supportive messages basically asking me to take immediate action! I will sleep on the suggestions made. I know there is a temptation to shout and write and complain but it is not my style but I am no pushover. I was disappointed with what happened or did not happen today but I did figure that I shall get to the oncologist now and hope that I get clearer support from her! I think what disappointed me more than anything was that in three appointments he has never taken any time to get to know me so I am just a number and he responds accordingly. This was not my experience with either of the two previous uro's and they explained, listened, supported and took my thoughts on board.

I may write to ask for an explanation of why an x ray instead of a bone scan which was my biggest disappointment. But I like Brian's suggestion of going to see Tina, the nurse practitioner who has always been very supportive.

I was surprised, taken unawares really, by the rise in my PSA. I had confidently expected it to go down again. If my theory about the amount I catheterise has any relevance I am still doing quite well so had assumed the prostate was still shrinking. Maybe it is and the rise is not enormous but there was no real discussion.

Thanks for your support you caring lot, I shall sleep on what to do next but not ready to bring out the big guns yet!

User
Posted 03 Jun 2015 at 14:55

Brilliant news Paul sometimes just to feel we are being listened to is enough to restore our faith. I am also a pacifisthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif (well a whimp really ) so achieving your goal through your own way is such good news. Well done.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jun 2015 at 14:59
Paul

So pleased everything is now being addressed and quickly too. Why the senior nurses like T are not more directly involved amazes me. Clearly she has a much better patient empathy and understanding than some of the consultants! What is more she takes immediate and direct action no fannying around with referring to the MDT just straight in with bone scan and oncology appointment just like that!

I hope Lyn has got the message to stand down you do not need either of our Rottweiler services at all.joking apart I think a non confrontational approach often has a better long term outcome so bravo to you for being the placid, sweet and kind gentleman that you are.

See you in a couple of weeks time.

Best wishes

Xx

Mo

User
Posted 03 Jun 2015 at 16:15
Seems like you got a result there Paul, good news all round and someone who is supportive and wants to help you

Arthur

User
Posted 03 Jun 2015 at 18:33

Shame, I had already packed an overnight bag and sharpened my teeth.

Seriously, I am so pleased that you have sorted this out - thank God for people like T 👼

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

User
Posted 03 Jun 2015 at 19:51

I am happy that you sound happy Paul, and that you have had a better "consultative experience".

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Jun 2015 at 21:57
Phew Paul

What a relief to read this, everything you needed, sorted without angst. Why, oh why did you even have to ask?

Anyway, delighted to hear that you are having a bone scan and an oncology appointment, this should result in a sensible treatment plan.

And relax,. glad Lyn fell short of having to sharpen her teeth, crumbs that was a thought, though I'd quite like to have witnessed the fall out.

Lots of love

Allison xx

User
Posted 05 Jun 2015 at 07:53

Hi Paul,
Just been reading through,really glad your are more settled and moving forward.

User
Posted 05 Jun 2015 at 09:41

Paul

Well done on your prompt action and result. It goes to show action gets results.

It seems to me that your initial consultant needs a bit of people training, regardless of his medical skills.

Paul

PS Lyn - do your teeth really need sharpening?!

Stay Calm And Carry On.
User
Posted 05 Jun 2015 at 10:44

No not really but the repeated sawing action helps me concentrate while I memorise the latest research etc and prepare my offensive

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

User
Posted 05 Jun 2015 at 13:31
Paul 6F2 Lyn needs sharp teeth to clench the veils for the dance of the vestal virgins at MOTS

Xx

Mo

PS it's a good job my backside is well padded because I suspect she may be kicking it ! Ha ha.

User
Posted 24 Jun 2015 at 13:20

OK I'll attempt a summary of my meeting with my new onco today. Firstly to say two things. It was strange returning to Western Park Hospital where I had been treated over 30 years ago for testicular cancer, gave me an unwanted sense of déjà vu. Secondly I found the onco very pleasant, listened and answered my queries and I felt reassured about progress. This is a brief summary:

Took brief medical history, surprised I had been trying since January to see her. Bone scan shows some return of mets in lower and mid back, sacrum, both femurs and the right pubic bone. Agreed RT next Thursday on right public bone and femur. Checking with orthopaedics whether a pin is justified for the femur bone? Will go to fracture clinic next week. Full CT scan to be done, first since diagnosis so will determine if there is spread in the soft tissues.

To continue on casodex for now. See if PSA stays stable. As it is around mid twenties at the moment, no doubling yet.

Next treatment - likely Abby or enzo, likely the second one because of diabetes and the problems with steroids.
Keep chemotherapy until needed later though CT Scan to be done to confirm no further spread which could change plans. We discussed QoL issues for my work and I felt that this order of treatment made sense for me unless there were clear indications that chemo was urgently needed. Cannot benefit from the findings of the Stampede trial as already three and a half years in. She did not think chemo was needed yet so enzo likely next step

Ok to have RT even though had RT treatment over 30 years ago but unlikely to be an issue. She will get notes to check what was done then. (blast everything and hope I seem to remember) Unlikely to have been done on relevant parts.

My leg pain is considerable at times as people saw at MOTS and I hope the RT will bring some relief. I felt she was acting quickly, and answered all my queries.

I did say if she didn't treat me well Mo and/or Lyn would be with me on my next visit! She visibly looked afraid!

So feel treatment path is clear and tests will give me a full picture. I know another circle has decreased but I always feel better when I know and trust what is happening so feel ok.

User
Posted 24 Jun 2015 at 14:15

Glad you had empathy with the new onco. She sounds like she knows what she's talking about. At least she is prepared to listen to you.

Good luck with the treatment plan Paul. I hope it succeeds in reducing your leg pain at least.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 24 Jun 2015 at 14:17

Well done, Paul on getting the recognition of the treatment you need.

Beast of luck.

Paul

Stay Calm And Carry On.
User
Posted 24 Jun 2015 at 15:20
Paul

that all sounds quite encouraging, Nice attentive Onco, PSA stable, RT boooked for pain management and maybe something more dramatic for your femur, enzo rather than Abby (quite understandable as you do not have to take steroids with that) no chemo yet and you feel reassured so all is good in the grand scheme of things.

You really did look as though you were struggling with the pain and mobility at leicester so make sure when you see the team next week if there is any medication you should take short term to help with the pain. If they are thinking of pinning your femur that must be looking a bit fragile so whilst RT may help somewhat it may not be enough on its own where that particular weakness is. Probably best to try things a little bit at a time.

I chuckled when I read that you threatened your Onco with me or Lyn or both of us accompanying you next time, but in all honesty I really would if you ever needed some moral support and a fiery dragon at your side.

Hope you are enjoying the cricket still, my brother was at the match at CLS he said it was really brilliant.

best wishes

xx

Mo

User
Posted 24 Jun 2015 at 16:06

Paul

Wishing you well on what reads a more planned and hopefully a more productive journey.

Ray

User
Posted 24 Jun 2015 at 17:53

So pleased to see your update - and now more new material for your novel :-)

Lyn xxx

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

User
Posted 24 Jun 2015 at 19:17

Hi Paul,

Good that you have an "on your side" professional working for you for this part of your journey.

And was good to have a chat with you at the weekend when you could drag yourself away from your tablet!  :o)  Drat, can't do an open mouth gob smacked shocked type smilie

What was that cricketing chant?

Aha I know,

"Bairstow, Bairstow Rashid, Patel, Cohen, Fritz, Wang, Abello, Jones, Rashid, Bairstow" etc etc

atb

dave

Edited by member 25 Jun 2015 at 09:36  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 25 Jun 2015 at 16:05

I chuckled as well Paul when I read what you had written about Mandy and Lyn I could just imagine them arriving on a Harley with a couple sheep tucked under there arms.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif enough to scare any body.

So at least you know have a plan and it sounds as though you will be able to form a relationship with your new Onco. This always helps . I am sorry that you have been in more pain recently but it does sound like the treatment will help and as you say it must be a relief to find out that RT will be helpful and available.  So Enzo it is then .

Thinking of you. X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Jun 2015 at 17:14

Hi Paul,

I'm pleased that you found an onco who you feel wants the best for you.  It makes such a difference.  I really hope that things improve for you over the coming months.

I'm sorry we didn't get chance to have a chat on Saturday, perhaps on a future occasion. 

Take care.

Steve

 

 

User
Posted 25 Jun 2015 at 18:13

Thanks all for your responses. I feel I have a plan and the next few weeks will see where I am and hopefully I will be ok to travel in the autumn and early winter!

I enjoy a beer Mo, always have, but drink very rarely now. because I can't cope with the volume. Considering Dave's suggestion of a convene sheath to save the need to go!

Yes Steve stay in touch, be good to talk, we got shunted around a bit so ended up not seeing much of you. Like the pics. Perhaps we will see you back on here, time surely for an update. I am reluctant to comment on personal matters on a Facebook site too public I think.

User
Posted 27 Jun 2015 at 20:50
A few days Paul, not long, John felt unwell for about two weeks afterwards, sleepy and exhausted for a that time too. It really has worked very well and we think it's responsible for the great drop on PSA too.

Hope it does the same for you

Love Allison

User
Posted 30 Jun 2015 at 19:25

Glad you don't need to be turned into metal man yet Paul.
Good luck on Thursday for the first round of RT.
Hope the RT impact isn't too bothersome

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Jun 2015 at 21:11

Some good news in there Paul, which is nice to hear about.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 30 Jun 2015 at 21:55
Paul that sounds much better than having metal Micky stuff done. You must be relieved.

Xx

Mo

User
Posted 02 Jul 2015 at 18:48

You're going to have a busy few days Paul.

Hope all goes well and you get some pain relief.

Good that you have such a great team.

We can't control the winds - but we can adjust our sails
User
Posted 02 Jul 2015 at 20:12
All happening now Paul and it is about time.

I hope all goes well with your zap tomorrow and for further scans etc

Quite amazing they still had records and scans from over 30 years ago wow.

All the best

Xx

Mo

User
Posted 02 Jul 2015 at 21:26

Hope everything goes well, Paul.

Good Luck.

Steve

User
Posted 02 Jul 2015 at 22:31

Good luck tomorrow my friend x

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

User
Posted 02 Jul 2015 at 23:44

Just catching up on what has been going on SO Zapping is imminent  , Sundays are Go and what was that you said about the cricket ?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif  I can't believe that I take a few days out and everything changes new avatars are springing up all over the place  (loving the new look Lyn) I might change my Avatar watch this space. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

It certainly sounds like all systems are in place for you Paul as always thinking of you. Good luck for the next scan results .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jul 2015 at 07:12
Good luck today Paul
Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Jul 2015 at 19:20
Hi Paul

Really glad to see things are moving along nicely

How are the leg pains are you getting any relieve yet

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Jul 2015 at 21:04

I hope so much you can settle and that the pain eases off enough for you to pull back on the painkillers. Pain is awful and has a cumulative effect gradually dragging you down further and further. Best wishes Chris

If life gives you lemons , then make lemonade

User
Posted 06 Jul 2015 at 00:12

Hi Paul,

So glad that you have a good weekend (loved the FB pics) now to wait for results of the scan sometimes it seems that we are always waiting for one result or another. I am keeping everything crossed for you that scan results are good and the RT helps with the pain.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Jul 2015 at 20:23

Not on first name terms like you Brian, I only got her surname. She was good and informed.

User
Posted 21 Jul 2015 at 21:30
Good news Paul and much better service from the medics, sorry the cricket has been so dire (as far as I've seen on the news that is).

Hopefully the tiredness will get better over time, john found a lot of it was down to the painkillers, but he is nearly off those now, down to 50mg tramadol once a day and paracetamol as required.

Lots of love

Allison

User
Posted 21 Jul 2015 at 23:13

I haven't been up to speed lately but who the heck is Lucy? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif where did she pop up from.  Jokes aside such good news Paul after what has been a hard few months to at last get some good news maybe she is Lucky Lucyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I am over the moon for you with scan results I know it has been hard with the pain and the worry that this has caused. To feel confidence in your Onc is such a good feeling.

I don't know any cricket terms and I don't any foot ball terms but I sure can shimmy so here is to you Paul I am going to shimmy round the kitchen singing Go Paul, Go Paul . http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Jul 2015 at 23:16

Hi Paul,

Really pleased everything is going well for you.  You deserve it.

I'm sure England will turn things around. 

Steve

User
Posted 21 Jul 2015 at 23:20

Good news, Paul, so pleased for you ! Just hope the cricket lives up to expectations !

 

Fiona. x

User
Posted 21 Jul 2015 at 23:22
Paul

that is great news all round (bit like your favourite cricket man) I know the UTi is a hinderance but at least you detected it from the start so you should be able to clear it without too much trouble.

I am glad you chose to go and watch Yorkshire rather than England you might get to see a better outcome!

all the very best

xx

Mo

User
Posted 22 Jul 2015 at 08:07

Great news Paul and such a relief for you.
Sorry to hear about Mr UTI, and I hope you get to show the unwelcome visitor the door very soon.
Best Wishes for your health and the cricket!!

We can't control the winds - but we can adjust our sails
User
Posted 05 Aug 2015 at 02:54

Happy, happy, happy to come home and see that you have managed another appointment without intervention from myself or Mo. I shall pack away the knives on the basis that these oncos seem to be pretty good :-)

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

User
Posted 22 Sep 2015 at 15:52

Good news, enjoy the Hong Kong trips!

User
Posted 22 Sep 2015 at 16:01

I'm just so pleased for you that the awful leg pain has gone , and of course the PSA stable.
Kowloon and Hong Kong -- happy memories !!
Enjoy your trips
Chris

If life gives you lemons , then make lemonade

User
Posted 22 Sep 2015 at 16:04
Hi Paul

This is so good news, very pleased for you. Enjoy Hong Kong.

Lesley

User
Posted 22 Sep 2015 at 16:13

Nice to read this Paul.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 22 Sep 2015 at 16:16

look at that the 2 of us posting on the same day, I am really glad that everything seems to be on an even keel Paul and that the pain is know under control. Loved the photos on FB .

Enjoy those two trips before xmas.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Sep 2015 at 17:35
Great news Professor 😀😀

So pleased to hear the pain has nearly gone enjoy those trips to HK hopefully squeeze a drink in before Christmas

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2015 at 18:02
Paul

I am so happy that everything seems to be stable, normal and unproblematic. Two more trips to Hong Kong is great news, Back In June I was worried that you would struggle getting out there and being mobile. The RT has clearly done a great job.

As Si says we really ought to try and get together before Xmas if we can. It seems a very long time since we had the last Newark do! A few of us can't make the flyer this year.

all the very best

xxx

Mo

User
Posted 22 Sep 2015 at 19:25

Great results Paul...Two trips to HK...I recall a couple of years ago you thinking that year would be your last there...so glad you were significantly wrong on that ;-)

Take care
Bri

User
Posted 22 Sep 2015 at 19:43

Very pleased for you Paul.

End results make the treatment worthwhile eh !

Enjoy your trips

We can't control the winds - but we can adjust our sails
User
Posted 22 Sep 2015 at 19:47
Great news Paul, long may outcomes like this continue. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 22 Sep 2015 at 19:50

P

 

Good news you deserve it, enjoy your trips, it would be good to meet up with the Newark gang again.

Thanks Chris

 

User
Posted 23 Sep 2015 at 00:49
Hi Paul

good to hear your news long many it continue.

Carol x

User
Posted 23 Sep 2015 at 01:11
Hi Paul,

Really good news that the treatment has worked.

Hope you have a great time in HK and enjoy the Newark meal.

Take care.

Steve

User
Posted 23 Sep 2015 at 05:37
Nice one brother.

My best wishes.

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 23 Sep 2015 at 09:27

Great news, so pleased for you !

 

Fiona. x

User
Posted 23 Sep 2015 at 16:02

Hi Paul
I'm relatively new as you know , but I can read that you are a very intelligent , motivated hard-working person with a long satisfying career . I was unfortunate enough to have to retire at the age of 46 after 28 years solid hard work in my life . Quite a step down and something i'm essentially still reeling from ( aswell as the PCa ). I've become a full time house-husband and I am very very busy to be honest ( the old adage " I don't know how I found time to work " ). I'm quite an unmotivated person so its been a difficult transition . What do I miss most ?? Personal interaction , " the laugh " , working as a team , solving the problem , the drink on the way home .
For what my advice may be worth , you don't seem to be the type of man at all who would get bored or sit at home or fester . You seem the kind of guy who makes the most out of every situation . If you were bored you would read and learn even more . Your children are grown adults who have made their own lives ?? They aren't relying on what you can leave them ? I keep asking my parents to enjoy " now " and release some equity from their home instead of sitting on it , to give to us one day .
Difficult to leave work -- undoubtedly . But sounds like now is the time to start enjoying a retirement given your health circumstances. Everyone deserves a retirement and I think you will enjoy it with patience .
Chris

If life gives you lemons , then make lemonade

User
Posted 23 Sep 2015 at 19:56

Hi Paul,

I had a dynamic, exciting and demanding career.  Like you I used to jet off to places like Hong Kong to work with our partner organisations where my skills and experience were highly valued (or so my ego told me).

Now looking back on it, the great demands and dilemas of my working life have faded into insignificance, and I am reminded of the old quote that 'the graveyard is full of indispensible men'!

Today, because the sun was shining, with my wife and step-son, I decided to go to Holkham beach and had a 7 mile walk with lunch half way round, we enjoyed it, we chatted, we had a good time, and it helped improve my fitness.  Because I am retired I can do it on days like this, and don't have to compete for car park spaces with the crowds who will throng there this weekend.

Tomorrow I am childminding my grandchildren, I will spend the morning watching over my grandson at 'todler group' and learning wisdom and insight chatting to young mums.

I have just bought an airfix kit, (remember them?) and so next week I will make the toy plane for my grandson.

I also have a half redecorated bathroom, a herbaceous border to sort out, a batch of library books to read before next Monday, and my other half wants me to arrange a trip to Canada.

So lots of things to keep me busy, I am still living and learning, doing my best to develop those two great gifts of enthusiasm and sponteneity.

Our lives are like books, and the best books have many chapters, so don't be affraid to turn the page and start a new chapter.  

:)

Dave

 

User
Posted 23 Sep 2015 at 21:11

Hhhhhmmm, I know how important that death in service benefit was in your calculations so I hope that you did finally get a decent package - it isn't clear from your post whether you have been worn down or not. So now I am a bit worried for you but on the up side you can finish the book and if things get really tight the cricket club might pay you to be the scorer .... I think at our place the going rate is £15 per match

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

User
Posted 23 Sep 2015 at 21:28
Paul

I am almost relieved to hear that you have reached this decision. Your work life balance has been admiarble. You will be so occupied in retirement you will have much less time on your hands than you imagined!

Book writing, travels, being with your family and advising in your profession. You might even find time to go to more cricket! sod scoring you would make a brilliant TV comentator with Bumble or Sir Ian !!

Hope to see you soon, we can compare solo retirement strategies

All my best wishes and an understanding hug

xxx

Mo

User
Posted 24 Sep 2015 at 18:51

Please don' t apologise Sandra, I wasn't offended at all. I have found walking challenging something I used to enjoy so much. Some of that problem has eased with the improvement in my right leg but there is still pain when I walk. I have joked with my son about a motorised scooter so not a far fetched idea at all. I am more mobile than that for now and can do a credible impression of being fine when I am in company. I tended to lecture sitting down when in Hong Kong recently but when I give a speech I am still on my feet moving around. I may pay for it the next day but I get more adrenalin for the speech when standing.

I have managed my issues ok so far. I get around in the car a lot and now have a blue badge which helps. I struggle up hills and upstairs but I get there. One thing that keeps me going is when I visit my 92 year old Mum who has just had a hip operation. She is unaware of my situation so I suddenly have to appear completely ok, the other day she said to me that I could use her blue badge when coming to the hospital with her, I decided not to tell her I already have one!

Luckily lots of the things I like - reading, dining out, watching sports, theatre and films, seeing the countryside, being with family and friends - can mostly be accomplished without too much physical activity. But if and when the scooter becomes necessary I will embrace the freedom it might give me to 'walk' rather than drive!

User
Posted 26 Sep 2015 at 10:50

Thanks Allison I appreciate your thoughts. I do have over seven months to begin to wind down, to build up other things to do and get used to the idea in my head. I just hope I can stay reasonably well until next Spring so I can enjoy a bit of 'me' time. I do have the novel to work on and will stay involved in a voluntary capacity with some work which helps the transition. But after months of deliberations the dye is cast. So onwards and upwards.

User
Posted 22 Dec 2015 at 21:41

Hi Paul sorry to hear your news hope all goes well in Jan have a great xmas and new year Andy

User
Posted 24 Dec 2015 at 08:03
Hi Paul, sorry I am late with this but like everyone else I wish you well and hope that whatever the quacks try next has a successful and lasting outcome. It was great to be with you at the Flyer and look forward to seeing you at the Mill in the summer!

Like you Xmas is a time I love, l hope you have a great one.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Dec 2015 at 11:40

Happy Christmas Paul and thank you for sharing

Bri

User
Posted 24 Dec 2015 at 12:22

A really great and inspirational post Paul.
Thanks for writing it.

My best Christmas wishes to you and everyone who uses this forum.

Batholith

User
Posted 24 Dec 2015 at 13:26

Merry Christmas to you and yours Paul.

You're like an Olympian, with all your circles linked to make a striking display of endurance and courage.

I like your thinking very much although I am sad for you that such thoughts are necessary.

Get on with that novel. I await it's publication with eager anticipation.

( I craft and I have spent the last several weeks putting my room straight, finding lots of bits and pieces that got mislaid (and don't tell John, but I secretly replaced thinking they were lost forever!!)
I too am tidy and organised now and it's been so long since the room looked like it now does that I keep going in there to admire it, I'm already planning my next lot of cards so I shall keep very busy with it all in the New Year.)

With best wishes to you for successful treatment for 2016

We can't control the winds - but we can adjust our sails
User
Posted 24 Dec 2015 at 13:43
Hi Yorkhull, superb post, good luck with the Enzo. I will follow your posts closely. Have a lovely Christmas
User
Posted 07 Jan 2016 at 17:01

Paul

Must be a quirk of CT departments, I had almost the same with my CT scan two years ago "insufficient clinical information" was the reason for the rejection but nobody was told, I eventually had my CT on the Friday and the op at 7.30 on the Monday.

Hope it all works out for you.

Thanks Chris

 

User
Posted 07 Jan 2016 at 17:46

Hi Paul
I've chased all the way this last 12 months , sometimes maybe unnecessarily but mostly needed. I've found that if I'm extremely polite it works wonders with people. It's not normally an individual's fault or laziness , just a system that regularly breaks down. I'm glad you got it sorted though. Lots of appointments back up over Xmas and " post holiday blues" set in.
Wishing you success on the Enzo
Chris

If life gives you lemons , then make lemonade

User
Posted 07 Jan 2016 at 18:10

Originally Posted by: Online Community Member

I've chased all the way this last 12 months , sometimes maybe unnecessarily but mostly needed.

We never know what needed chasing if we don't chase everything. Sounds like damn good project management to me. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 08 Jan 2016 at 20:20

Thanks Allison. It has all been corrected now and CT Scan next Wednesday so not lost any time! Nurses as often were very good and helpful when I went in this morning.

I can understand that John would want to get bone scan done, it can take time to re arrange and you need to know. Hope he is recovering from the op now.

Our paths have had quite a lot of similarities though haven,t had the recent problems John has had. We have been nip and tuck about the next stage and sounds as if John won't be far behind me. Will keep in touch.

User
Posted 08 Jan 2016 at 23:26
Paul,

Not sure how but I missed your wonderful post from Xmas Eve I have always admired how elequently you are able to put pen to paper but then I suppose you are pretty much in awe of humour .🤗

Wheels and circles ehhh. I have got one request when your book is published can I have a signed copy😋

So glad that you have your scans booked and sorted the sooner that you can get the Enzo Underway, not good news that your pain has increased this is such a strange disease when you think that your scores and Trevor's are so different at nearly 600 his walking and pain is still good. A little more of a shuffle but still on paracetamol another reason why we can never compare . So your circles are getting smaller and the wheels are rapidly falling off our wagon. Onwards my friend always onwards.

Much love

BFN

Julie X

ps I know that I am 3rd in the Que for female company at Onc visits but if you need me just yell , I am very good at listening , superb at keeping a secret and renouned for my witty quips. 🤐

X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Jan 2016 at 09:21

Hi Paul,

i hope you have the pain under control now, good luck with the scans.

What is it with January there is always bad news.

Look forward to seeing you soon

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Jan 2016 at 22:39

So appointment with onco today and not a bad outcome, expected to be starting my enzo journey today but another reprieve. So first the bad news is that PSA has risen once again and is now 47 up from 38 just five weeks ago. But I was still taking casodex so onco suggested we should try a period without it as there is sometimes a spontaneous drop which follows withdrawal of casodex and I have had a good year on it. So before saying yes to this we looked at the latest CT Scan and this is good news. Still no soft tissue spread at all and th bone mets appear to be the same as before. Given that, I agreed to a further six weeks without casodex to see where PSA went next with a view to starting enzo then or maybe not even then. This stretches my timeline as it delays newer treatments a little longer. So agreed with this and also fair to note if i had said enzo now he would have gone with that too.

Discussed my middle back pain and he listened carefully. Did offer RT as pain relief but I am not at that stage yet as it comes and goes and with pain killers and rest I can calm it down. But his parting comments 'phone me if you need to discuss anything' was very reassuring.

So I am still tiptoeing towards the next treatment as I reach four years since diagnosis. You have to make the most of it really it's the start of another year!

User
Posted 27 Jan 2016 at 21:26
Hi Paul

Every reprieve is welcome, we've had a year of reprieves now as we expected chemo/Enza at the end of 2014 and still we haven't got there. Hope you can beat us in terms of reprieve time, wouldn't that be fab?

Love Allison

Edited by member 27 Jan 2016 at 21:27  | Reason: Not specified

User
Posted 04 Feb 2016 at 18:00

Hi Paul,

Hope you have that pain under control soon, if you ever need anything give me a ring i am only down the road.

Don't bother with Julie she cant drive, she would be coming on the ride-on, take her days http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So i have loads of drugs and can travel

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 Feb 2016 at 18:48
Hi Paul

.... I know I live quite close by and in truth just one text message and I would be there to help any way I could. Even if it is just making cuppas and tasty food or running errands. Never ever be stuck without help I would be mortified at the very thought.

You may be single but you are not alone.

Piglet has a really valid point, getting medication to a preventative level is a bit trial and error and in the time it takes to establish the best dose and frequency use the oramorph. I think I mentioned to you once before it does have a shelf life once opened so if you have not taken it for a while get a new supply.

Casodex cessationn can cause a withdrawal bump or tumour flare, hopefully revised timescales for treatment plans will take care of that and quickly.

Si reckons Julie would take days on the ride on to get to you, he hasn't seen her turbo charged broomstick (she borrowed it from me!!) I am intrigued to see what Lyn has up her sleeve but suspect that HD of John's might feature?!

all my very best wishes and a big friend hug

xxx

Mo

User
Posted 05 Feb 2016 at 18:02

It may not be the PCa Paul - lots of people need painkillers before they visit Halifax!

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

User
Posted 14 Feb 2016 at 10:26

This post warmed my heart. You have learnt to savour and value every year spent with your loved ones . Sadly we often can't or don't do this so well without that dagger hanging over us. Long may your yearly celebrations continue. Georgina

User
Posted 14 Feb 2016 at 11:12

Great post Paul
Many rendezvous yet I'm sure. I'm gunning for you along with everyone else. Don't let your groupies down ok
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Feb 2016 at 11:59

I'm so glad that you get to do this Paul. It not only marks the time for you but (selfishly) it marks the time for others on here.

A lovely inspiring post as usual. I'm also pleased that the restaurant is worth returning to !!

We can't control the winds - but we can adjust our sails
User
Posted 14 Feb 2016 at 12:15

So glad you had a great time with your family Paul. Although we have a terminal disease, you are such a positive force in showing that the terminus is literally beyond the horizon. Here's to many more Barton Valentine dinners.

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 14 Feb 2016 at 16:22

Top post. Top man.

User
Posted 14 Feb 2016 at 18:13
What a lovely post Paul I can just picture you and your children enjoying a wonderful meal together . Long may this tradition continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Feb 2016 at 02:22
Hi Paul,

Really hope this tradition continues for a long time to come. I can't think of nicer way to spend a day than to enjoy a good meal and a couple of drinks with your loved ones.

I hope things go better for you in the coming months.

Best Wishes,

Steve

User
Posted 15 Feb 2016 at 08:21
Paul

Lovely to hear your Barton traditional meal went so well. I hope you get to do this over and over again.

My very best wishes

Xx

Mo

User
Posted 15 Feb 2016 at 08:52

Hi Paul. Just adding my support along with your legion of fans !

 

Fiona.

User
Posted 15 Feb 2016 at 10:07

Great to hear you had a good night. Really glad to hear the pain is subsiding also

Take care

Bri

User
Posted 15 Feb 2016 at 11:10
Nice reading that you had a good night out. I have 2 daughters too and being with them when they're home is just fantastic.

I've followed your posts since joining and just want to wish you the best in these uncertain times for you.

User
Posted 15 Feb 2016 at 20:06
Absolutely heartwarming post Paul, many more meals are ahead my friend.
User
Posted 15 Feb 2016 at 21:17
Hi Paul

What a lovely post to read. Glad to hear the flare up seems to be subsiding. Enjoying quality time with the most important people in your life is wonderful.

Long may it continue.

Lesley x

User
Posted 08 Mar 2016 at 19:41

Hi

I've just had to remind him to take them tonight as it is Chemo day tomorrow. His chemo is scheduled for 10 am, so 12 hours before at 10pm he has to take 4 x 2mg, then at 7.00 am tomorrow morning (3 hours before) he takes another 4 x 2mg and then at 9.00 am tomorrow morning (1 hour before) he takes the final 4 x 2mg - so quite a hefty dose in a short space of time.

Hope this helps.

User
Posted 08 Mar 2016 at 20:09
I'm sorry to hear of the increase Paul but am super impressed with your Onco.

I suppose the idea is to enjoy your last few working weeks and why not? Plenty of time for the other treatments after you are a gentleman of leisure xxxx

User
Posted 09 Mar 2016 at 11:12

Hi Paul

I’m trying catch up on posts. I read you’re getting prepared for yet another challenge on your PCa journey. I wish you all the best and luck on that.

Keep going as well as you can.

Ray

User
Posted 09 Mar 2016 at 11:14

I wish you well with the tablets Paul and hope that the last few days at work are all you want them to be.

A sad time for you too as it marks the end of an era, but hopefully the start of a different one, with the novel to finish and all the others things that you may have planned.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Mar 2016 at 11:54

I can only wish you all the best Paul
You will enjoy retirement as you have things to do and a book to write etc. I think its great that you and your Onco have a great bond . Its of vital importance . When I saw mine last week I felt that El and I and him bonded really well and reached an understanding and a plan that we are all happy with .
Hope the new tablets ok , and most of all I wish your pain to be minimal
All the best
Chris

If life gives you lemons , then make lemonade

User
Posted 09 Mar 2016 at 23:11
Hi Paul,

So not so good news re PSA obviously not what you wanted to hear. Hang in there my friend you have lots of options still available , so keep focused .

It is so comforting when a good rapour is made with our onco and it sounds like you have exactly that.

Trevor is taking 10 mg prednislione , 5 in the morning and 5 at night . He is extra hungry and has much more energy, other than the odd panchaunt for climbing on the roof To check rat infestations 🙈 Then life is well pretty much average🙃

Lots of love my friend.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Mar 2016 at 23:30

Hi Julie,

The suggested dose for me is very low and it is optional. The pains are behaving themselves for now so will leave it a while. I am tempted to see what energy the steroids might bring me but resisting that temptation as try and keep what I take to what is necessary. But it's there and immediately available so that's comforting. I seem to be having a good week this week so will keep it in the box a while longer though it might help treatment more widely so still thinking!

Good to hear from you.

User
Posted 10 Mar 2016 at 07:51
Paul

Sorry to hear about the PSA rise. Your resilience and tenacity never fails to amaze me and I am sure you and many of the other guys like you are an inspiration to others.

Thanks Chris

User
Posted 10 Mar 2016 at 11:04
Hi Paul

sorry I would have posted sooner but I have been on my travels again.

Low dose dexamethasone (1 - 2mg daily) is a really common co- prescription for helping to combat fatigue or general malaise from illness or as a counter measure to drug SEs.

Having it there to use if you feel you need to in order to finish the last few weeks up to your retirement, is a good idea. Just be mindful to follow the directions for taking it and also for stopping it if you decide to go down that route.

From what you have said I suspect the stomach meds are an acid inhibitor possibly Omneprozal or Lanzoprosal (these are routinely prescribed to anyone taking any long term anti inflammatory or some acute pain relief drugs) to reduce the risk of stomach bleeding or ulcers. In which case if you are still using daily pain medication you should take these.

Looking forward to you completing that book too.

My very best wishes as always

xx

Mo

User
Posted 14 Apr 2016 at 16:49

Paul

Good to hear there has been an improvement even if it is as you say "only temporary"

Thanks Chris 

User
Posted 14 Apr 2016 at 21:29
Such a lovely post Paul, your photos were great. I'm sure that novel will soon be on your desk.
User
Posted 14 Apr 2016 at 21:46
Paul how fantastic such an upbeat post. Those steroids really do help

Loved all the Malta photos too

Xx

Mo

User
Posted 14 Apr 2016 at 22:29
Hi Paul,

Yes the page flip problem is still ongoing but I still know where to find you😍 Maybe there should be a stickie or a stuckie on page 8 when page 9 is not found , something like.

For all new comers when trying to access pages that are not found a double back flip to the previous page 🙃 Usually sorts out the problem but a generous helping of steroids is usually needled to accomplish the back flip.

Just a thought but maybe Sadie could hand them out at the door.😊

So enough sarcasm , photos were lovely and warmed my heart so glad that you have had some relaxing and fun time. I know the steroids are strong stuf and have equally strong side affects but there is no denying the boost that they can give.

BFN

Julie X

Ps stay of the roof 😎

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2016 at 07:58

Wow just read this. Sounds like you are in a better place then you have been for a long time.

Long may it continue

Bri

User
Posted 15 Apr 2016 at 08:05

just read it myself cheered me up no end

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 15 Apr 2016 at 17:33
Hi Paul

Great to see how much the steroids have helped you. And to also spend a few days away in sunny Malta, with your daughter, an added bonus!

We spent a few days in the lake district, wasn't quite so sunny but a nice break.

Lesley x

User
Posted 15 Apr 2016 at 22:01

Thanks Chris. I appreciate the sentiment. I think accepting the inevitable allows you to get on with life and leave the worry about dying to the medics. I have done well even if the aches and pains have been a bit debilitating. I have got better at managing myself through the day and through the week but the steroids have given me a particular boost over the last few weeks which has enabled me to do so much. I,ll take whatever is next, I'm just glad still to be here!

Have a good weekend.

User
Posted 15 Apr 2016 at 22:26

So pleased for you that you are having this boost. Hope it lasts as long as possible.

Rosy

User
Posted 03 May 2016 at 13:08

So pleased for you Paul
What a result and outcome. Fingers crossed
Chris

If life gives you lemons , then make lemonade

User
Posted 03 May 2016 at 13:13
P

Brilliant news, you deserve some good fortune. Enjoy your retirement and I look forward to seeing your book being published.

Thanks Chris

User
Posted 03 May 2016 at 13:21

That sounds great Paul.
I didn't know that the steroids could have that sort of effect on PSA. Awesome that you are feeling so well and positive.I have been having the same steroid but in larger doses and for the first 3 days of each chemo cycle. I think its just to give me a bit of a lift before the cycle kicks in properly.
Looks like you are really going to enjoy your retirement, so much to do! I imagine you have kept up the food appreciation too, I understand steroids help in that regard. For whatever reason right through chemo I have loved my food and drink, it has been a bonus :) It is a crazy disease and we just don't know what to expect next, that frustrates me the most.So many inspirational stories on this site tho.
Go well everybody and may you have a glorious UK summer to enjoy.It has been amazingly good in Auckland and still ongoing as I write and damn it I deserve that!!

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 03 May 2016 at 13:49

A big welcome down under if you do make the journey again!

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 03 May 2016 at 14:31
Paul

Marvellous!! Good news for you all round.

Well done, Arthur

User
Posted 03 May 2016 at 15:35
Paul, glad to hear about the PSA fall. I commenced Enza three months ago and mine has fallen 90% down to 1.6 with the previously affected lymph nodes returning to normal size.

I feel very overweight but otherwise as fit as a butcher's dog (one that does get tired) but I sleep when I'm tired and wake when I'm not. I roll with the wind and flow with the tide. Looks like you're doing the same.

Continue to enjoy life brother.

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 03 May 2016 at 15:41
Paul,

That's great news re your score. Really pleased for you.

John

User
Posted 03 May 2016 at 16:21
That is great news, esp as you still have enza in the cupboard!

Glen

User
Posted 03 May 2016 at 17:25

Hi Paul,

That is a remarkable result! - And you still have Enzalutamide if/when needed. What a great start to your retirement.

It's so good to see unexpected surprises like this. Brilliant news!


See you at The Mill,

George

User
Posted 03 May 2016 at 17:59

Brilliant if a somewhat unexpected result...but then that would have made the news so much better as well.

As others have said a great start to your retirement. Make sure you do all those things you have put off

Bri

User
Posted 03 May 2016 at 18:09

Great news!  

 

Flexi

User
Posted 03 May 2016 at 18:30
How nice to read such lovely news coinciding with your retirement. The only problem I have found with retirement is that there is so much to do but it is great to be able use your day as you want.

Best wishes for the future.

Kevan

User
Posted 03 May 2016 at 18:41
Paul

I am so happy for you I did a little dance when I read your post, I bopped all the way to the fridge and poured myself a celebratory G&T and I have to say it tastes every bit as good as your news.

Now retired and with time on your hands to finish that long awaited novel.

Really looking forward to seeing you at the Mill.

xxx

Mo

User
Posted 03 May 2016 at 20:07

Really good news for you Paul...

Pleased that you will be able to concentrate on the projects that you intended to work on now you have retired....


How we all differ.....I retired almost 7 years ago, and have done bugger all since ... but I enjoy every minute! .. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes to you

Luther

User
Posted 03 May 2016 at 20:32

Hi Paul

I don’t know what it is you are doing but with your numbers and the improvements which you are experiencing keep on doing it! It is great that the improvements have coincided with your retirement.

This shows once again that this disease is unpredictable and sometimes not understood! See you in Leicester.

Alan

Edited by member 03 May 2016 at 20:33  | Reason: Not specified

User
Posted 03 May 2016 at 21:02
So good to read your news Paul, hopefully will improve further, I look forward to the publication of your novel!

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 03 May 2016 at 21:22

Hi Paul,

I'm so pleased to hear that you feel so much better and to see your great PSA results.  That is such good news and a great way to begin retirement.

Settle back, enjoy the cricket, finish the novel and have a great time at the Mill next month.

Take care.

Steve

 

User
Posted 03 May 2016 at 21:49

This is wonderful news, I am really pleased for you paul. Enjoy your retirement.

Lesley x

User
Posted 03 May 2016 at 23:07
Whoo hooo see I told you Paul those steroids will have you dancing on the roof in no time, your post my friend has got me dancing in the aisles. Fab news I am so so happy for you.

Way to go I must admit I did think your face on the pics on fb seemed happier . That news has made my day.🙃

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 May 2016 at 18:22
Hi Paul this is such great news

I was in Donny at the weekend with the kids at the Dome playing on the water slides if I knew you was as high as a kite I would have invited you

Looking forward to a few beers and a catch up soon

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 May 2016 at 20:20
What a wonderful post to read. I'm so delighted for you Paul.

Love

Devonmaid xxx

Edited by member 05 May 2016 at 21:13  | Reason: Not specified

User
Posted 04 May 2016 at 21:40

I prefer to hope it is antiandrogen withdrawal, mainly because - based on your responses so far - that may be sustainable for a significantly longer time than steroids might be.

Whatever it is, it is marvellous to see you so bright and sparky, my friend xxx

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

User
Posted 18 May 2016 at 14:39
Loved it Paul you sound just like Mr Kipling🤗

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 May 2016 at 16:19
Paul ,

You're the first of the Online Community folk I've heard speak ! Really enjoyed listening to you. I now have a new ambition and that is to be able to play " when I'm 64" on my 64th birthday. I've just turned 59, so it's something to aim for.

Re childcare, my wife and I both worked part time after our twin daughters were born, so I agree with you that it's something special to be able as a father to have been so closely involved in their upbringing. This continued for me until they were in their early teens.

Wishing all the very best ,

John

User
Posted 18 May 2016 at 16:56

Mr Kipling indeed. Really interesting too

We can't control the winds - but we can adjust our sails
User
Posted 18 May 2016 at 17:18

Very interesting Paul,

Thanks for the the link....

BTW.......Speaking as a bloke who originates from the west country ....it's the interviewer that sounds like Mr Kipling to me...not you! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes

Luther

User
Posted 01 Jul 2016 at 14:21

And this

And relax I have made it to page 10! Anyway update on previous page!

Edited by member 01 Jul 2016 at 14:23  | Reason: Not specified

User
Posted 20 Dec 2016 at 15:00
Joy of joys Paul. A huge well done and happy Christmas to you and yours. Mine is behaving itself around the 3.5 mark after two years on HT and nearly 7 since DX. Although on Enza as well, I kind of look forward to taking my four horse tablets at night, but not half as much as I'm looking forward to tucking into some turkey and a fine wine this Christmas. Let's do 2017 together with a PSA still in single figures and stick two fingers up same time next year.

Soldier on brother.

Bazza

Barry

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 20 Dec 2016 at 15:56

I hope keep turning the page didn't tire you out Paul, you need your strength for celebrating Christmas !!

Well done on all the results.

I sincerely hope that you and yours have a joyous and joyful Christmas and I wish you the continuation of your recent improvement in health in 2017.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2016 at 16:43

Great news Paul...you and Julie have cheered us all up.

Have a great Christmas.

Eleanor

x

User
Posted 20 Dec 2016 at 19:26

Great news that seems particularly better at this time of year. I agree with Barry that you should give it the two fingers and continue this trend into 2017 and beyond.

Newbies should read your story to give them hope in those dark early days

Enjoy your Christmas break with your family Paul

Bri

User
Posted 20 Dec 2016 at 20:44
Hi Paul,

What a lovely positive post. Am sure it will give hope to many! Wishing you a great Xmas and a very happy new year!

Lesley x

User
Posted 20 Dec 2016 at 20:54

I had a colonoscopy recently - by far the worst experience of my life (and I have had numerous babies without pain relief so consider myself pretty tough). The taste of that awful stuff will stay with me forever :-(

But you have survived the awfulness and lived your life, squeezed in yet another trip to Hong Kong and enjoyed loads of cricket (is enjoyed the right word?) - have a wonderful Christmas my dear friend xxx

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

User
Posted 20 Dec 2016 at 22:27

Brilliant news in time for Christmas :-) x

User
Posted 21 Dec 2016 at 08:06
Lyn

Cricket is the sport of Kings. At the moment, the English team are playing like a third eleven club side but oh, the drama!

X

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 21 Dec 2016 at 21:34
Dah Dah and here you are on page 12 , what can I say my dear friend other than congratulations on getting to page 12. Of course the bigger CONGRTULATIONS is the PSA FAntastic news so happy for that result. I did see your leg problem on FB , also loved your photos and have just managed to catch up with your blog.

Ok so a bit of a downturn with the leg but on the flip side I think you are on the way up.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Feb 2017 at 17:23

Oh you have had a rough time of it Paul.

Why shouldn't you apply for the PIP. Independence means so much to most people but to somebody like you, who has been used to jetting off around the world it must be very frustrating.

Go for it

We can't control the winds - but we can adjust our sails
User
Posted 12 Feb 2017 at 19:09

Paul, I admire your positive thinking, which I've always advocated as half the battle in combating PCa. I think going back to the same place each year for a celebration is a great idea. However, I am convinced you'll be doing this first least another five years, based on my own experience, probably rather more. I remember my consultant saying over nine years ago "live every day as though it may be your last and enjoy life". With my numbers and the treatments available then, he didn't expect me to survive. But I'm doing better than that, as you are. Keep at it, mate, and don't let the b*****s get you down. If I were you, I would avoid all the mobility props as long as possible. Independence is greatly to be preferred to dependence, be it on the state or relatives or anyone else.

Keep at it, old son.

AC (73 and counting)

User
Posted 14 Mar 2017 at 12:25

So back at oncologist for three monthly check up. Well PSA remains under control, no drop but more or less the same at 3.90. We then had a long discussion about my general well-being. She had asked me how I felt and said I looked well so I had to point out it was early morning and underneath I was more like a swan, looking good above water but paddling like mad to keep going. This discussion was partly to alert them to my PIP application. (Yes decided to submit an application and see where it gets me, given I'm nearly 65 and you have to submit whilst 64). My mobility is really not good, poor really and I think it's a reasonable application but I will keep you posted.

So we discussed my right leg and though she was not inclined towards a bone scan, arguing the PSA was strongly suggesting no great activity but she sent me for x-rays to check bone thinning DN11 to see what is going on on my right leg, no outcomes from that yet. Has reduced my steroid dose, concerns about side effects and I think will be moving onto enzo over the summer, hinted at anyway. Hope that reduced dose might have positive impact on my well-being whilst not bringing back symptoms which have been held steady. It's a year since I started my dexa journey and it's been a good one.

So quite a good conversation and I hope I did enough for her to support my PIP application. A year of PSA reductions is the bottom line good news and I can take that.

User
Posted 14 Mar 2017 at 12:41

Good to hear this news...stability is a wonderful option when the roller-coaster beckons. Great that Dexa has done its job so well, and good that the steroids are being reduced. Here's to a successful PIP and wild times on the scooter (maybe get a Tony the Tiger tail to go on the aerial and a Parka jacket with the pretend fur round the hood).

Take care.

Eleanor

User
Posted 14 Mar 2017 at 17:38

Maintained PSA - wow and double wow. You are another example of how predictions can be wildly wrong; am looking forward to pogo-ing around with you soon x

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

User
Posted 14 Mar 2017 at 19:46

Great to hear the PSA is holding steady Paul. I'm sure she will support you with the PIP application

We shall have to arrange breakfast to celebrate

Bri

User
Posted 14 Mar 2017 at 20:33
Po-going that has really made me smile actually scrap the smile that has made me laugh out loud or as the new term for youngsters is LOL . I remember it well .😄

Sorry Paul I can't type as still laughing .

Alright I have sorted myself so brilliant that the PSA is holding steady that is music to my ears I do have worries in the reduction in Dexa but I am sure you will sort it if it needs to go up a touch.

Regarding the pip application I don't think it is wise that you mention that you can Po- Go round the block. 😉

Love you loads Paul you know that and just taking a moment to be serious you deserve a helping hand and I know how much you have struggled with walking etc .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Mar 2017 at 21:38
Great news Paul so pleased for you

Not sure what Lyn is up to I thought it was a nice sedate evening with good company not a punk revival

Look forward to seeing you soon

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Mar 2017 at 22:03

It says on the PIP form, how many times have you a) pogoed in the last year b) pogoed with Lyn in the last year c) can you pogo on a mobility scooter. I did not know how to answer until Lyn and my crazy wonderful friends got involved. Thanks for your continued support it means a lot.

User
Posted 15 Mar 2017 at 09:10
P

Good news on the PSA and I hope your​ PIP is approved.

Thanks Chris

User
Posted 05 Apr 2017 at 21:46

Tell him I tried to search the crowd but failed to spot him :-(

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

User
Posted 09 May 2017 at 16:52

Okay I've reached the enzalutimide circle as my circles just decrease a bit.

Had onco appointment today. Mixed bag on the various results but overall ok. PSA gone up from 3.90 to 10.1, reversing the last year of decline. Bone scan showing further metastases in the right leg and pelvis area and a few new hotspots there, which reflects my experience of increased pain there, rest of bone scan static so good news there. Great news that on the CT scan no developments at all so no soft issues issues at all, so very pleased with that one.

We discussed enzo or Abby; chemo and/or radium 223. Slight concern from onco about some patients having had neurological issues with enzo, thought he admitted this was a small number and not heard it on here. (Anyone heard about this?). Decided best option is enzo, given diabetes but if it causes problems I can switch to Abby within three months. Keep chemo and radium 223 back for now. So decision made and start in two weeks (on holiday next week).

Then saw urologist and he confirmed for now I can discontinue self-catherisation as no longer getting significant retention. Gives relief from that endless task for now. Such a relief just to go to bed without that procedure. No UTI for about 10 months so staying on prophylactic dose of anti-biotic for now. Out of the blue he then initiated a conversation about end of life decisions particularly around when to discontinue treatments. I was impressed that this discussion was taking place even though it is not happening for me yet. Important to have thought through such decisions before they are upon you.

So overall a not unexpected development and still after five years + still moving along to that end point but mercifully slowly.

User
Posted 09 May 2017 at 18:35

On the surface not brilliant news Yorkhull but given your PC history it is still encouraging?

It's good that you can have"proper" discussions with your specialists

Long may you continue to give PC run for it's money !!

We can't control the winds - but we can adjust our sails
User
Posted 09 May 2017 at 22:17

Early chemo protocol applies to early stage of diagnosis, Bri, and I was diagnosed before that protocol was put in place. I think chemo will happen if (when?) I start to get soft tissue spread. For now bony mets best dealt with by enzo. But it's there for later on.

User
Posted 09 May 2017 at 22:49

Paul
I hope the enzo works for you as it is doing for me.
I hadn't heard about the neurological problems with the drug.
My onco did tell me that abbi could give problems with the heart and it did give me bad bowel problems so enzo I'm sure is the better choice.

Good luck Paul I'm gunning for you.

Paul

User
Posted 10 May 2017 at 04:27

Enzo had a constipating effect on me so it might just turn out to have a compensating balance to your IBS. Fingers crossed.

User
Posted 10 May 2017 at 08:35

Same here with the constipation though I'm not sure whether that's the Enzo or the HT.
Hope it does balance you up a little Paul

Paul

User
Posted 11 May 2017 at 22:28
Ok so the circles are a little bit smaller Biut you still have shed loads of tools in the bag . Something Si said about going back over old threads struck a chord with me and for sure so many who are not here anymore is a sobering fact But there are a few of us oldies hanging in there and my friend you are more than hanging in there. . Yes the scans were not ideal , PSA is showing an upward trend but there are lots of options still to be tried .

Just seen another Birthday celebration has been had so time to celebrate another mile stone .

I don't want you to post this all over Fb but I have got a secret crush on you 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 May 2017 at 22:37

Julie awwwwww....... Now I have to imagine this given five years of hormone therapy but I would be tickled pink with such a revelation. So I'll hold onto that thought even if in reality I have given up looking for my libido last seen circa 2011 when I was on a testosterone gel and feeling like a 15 year old on heat!

I do feel very lucky given the starting point and I remain positive for us oldies - Trevor, and Si particularly and so many more on here but I also remain realistic and make the most of what I can do as tomorrow or some day it will get sticky.

User
Posted 29 May 2017 at 01:38

Best of luck with the enzalutamide Yorkhull. My other half started about 2 weeks ago so I will follow your experience with interest. Yvonne

User
Posted 29 May 2017 at 17:50

Hi Paul

Read your blog of which I will revisit. Comes at a reflective time for me. From those I know on PIP I can't see you having problems but?

Thanks and good luck

Ray

User
Posted 29 May 2017 at 22:07
It's been a Clucker of a week hasn't it, sadly I am old enough to remember the IRA bombings and it seems sometimes we are no further forward on the those terrible dark days .

So sorry to hear about you friend Paul even when we have time to adjust to the inevitable it is still a shock .

So Enzo started I have got everything crossed that things will improve for you . I keep meaning to ask if you are on Zometa ? It worked wonders for Trevor's bone strength and pain .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 May 2017 at 17:15

Thanks Lyn. Done a week now and feel ok. Went to spend time with family to plan a day's celebration. Great children.

User
Posted 12 Jun 2017 at 18:45

Great news Paul and gives me hope for the social care system in this country. A lease car sounds a wise choice.

Fingers crossed for you that the enzo does its thing.

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

User
Posted 13 Jun 2017 at 17:33

Excellent news Paul.

You know you're own situation.
Take it for what it is in that case.

Use it to make your life easier. Why shouldn't you.

This award is deserved. Much deserved.

We can't control the winds - but we can adjust our sails
User
Posted 27 Jun 2017 at 22:17
Hi Paul

Really pleased to see your psa results drop, long may it continue for you.

Take care

Lesley xx

User
Posted 27 Jun 2017 at 23:14

Well done Paul

We can't control the winds - but we can adjust our sails
User
Posted 27 Jun 2017 at 23:39

Good news like this bolsters us all I think, especially in otherwise dark times. Really pleased for you x

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

User
Posted 28 Jun 2017 at 02:05
Hi Paul,

Very good news with the PSA results. Long may they continue in a downward direction.

Take care and enjoy the cricket season.

Steve

User
Posted 28 Jun 2017 at 06:30
Great news about your results a Paul, always good to read, take care, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 28 Jun 2017 at 10:12

Great and encouraging results Paul

Here's hoping the pain soon starts to subside

Bri

User
Posted 28 Jun 2017 at 22:30
Always fantastic to read such great news Paul, delighted for you.

Love Devonmaid xx

User
Posted 28 Jun 2017 at 23:27
Paul

Great to hear your good news. Hope it continues.

Thanks Chris

User
Posted 03 Aug 2017 at 14:47

That's good news Paul - sod the PSA trends and trust how you feel x

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

User
Posted 04 Aug 2017 at 17:16
Paul you are so right Life is for living although as you say some days that is easier said than done .

I echo what Lyn has said I wouldn't be to disappointed with the PSA levels Trevor has had a few drops on Abbi but over the past two years the general trend has been upwards and totally agree that it is more important how you feel .

Says She who feverishly writes down every PSA level at appointments like a demented secretary . 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Aug 2017 at 12:58

So diabetes appointment today. Great to see better control since change of meds. My hBac1 down from 74-64 which is really good. Lost weight. Vit D back to normal so all in all in good shape to support everything else. No change of meds needed and six month follow up. Quite pleasing and tolerating enzo at moment makes things really ok.

Edited by member 25 Aug 2017 at 19:53  | Reason: Not specified

User
Posted 25 Aug 2017 at 14:43

Well done Paul. Very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 25 Aug 2017 at 16:32

Paul

Great to hear your news, hope it continues.

Thanks Chris

User
Posted 25 Aug 2017 at 17:11
Good news, hope you keep tolerating the Enzo and six month follow up shows how pleasing the results are. Best wishes, Ian.

Ido4

User
Posted 26 Aug 2017 at 07:34

Keep the good news coming Paul

Bri

User
Posted 26 Aug 2017 at 07:52

Great News Paulhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif 

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Aug 2017 at 21:53
Fab news Paul ,

I have been a little late replying to everyone I have been knee deep in puppy poop!

Fantastic that you are feeling good and Enzo is helping X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2017 at 19:21
Oh my goodness I can just picture you in your car tootling along , as only Julie would say Keep Tootling 😘

We are maybe at that point when A PSA is rising / tick

Pain is increasing - tick

Hence scans scheduled for next week , last scans revealed everything was stable but as they say tomorrow is another day .

Keep on Tootling my friend Keep on Tootling . X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2017 at 20:33
So glad you’ve got your car Paul, at least you can drive and that gives you such a sense of freedom.

I know John misses driving but the constant bladder spasms make it impossible and dangerous, it’s a real loss.

I hope you manage to get out and about, it definitely improves life.

Sending hugs, I know the PSA worry only too well, but I still maintain that the way you feel means more.

Take care

Devonmaid

User
Posted 15 Oct 2017 at 18:33
I'm new to this community as of today but I just had to say thank you and express my gratitude to you for sharing your journey. You have given me hope in so many ways. I read your post about bone mets and realized it's from 2014...our new diagnosis of cancer in the bone is what brought me here today with a breaking heart. Your words from three years ago resonate with me...

"As I said at the outset I have no illusions that I am not dying from Prostate Cancer but am not at 'end of life' but rather seeking to enjoy my life in whatever time remains - it is quality of life rather than quantity which drives me." Thank you for all of this especially today when I needed strength and optimism.

User
Posted 15 Oct 2017 at 19:30

Hello Elie and welcome.

Paul (and others on here with the same or similar diagnoses) are real inspirations as they show that they have cancer, the cancer doesn't have them.

I read your profile with sadness but also found it comforting to know that your man has you by his side, every step of the way. I am so sorry that your life appears to be very much deja vu , having lost your first husband to cancer.

We are indeed the people to come to for letting off steam, to rant at the unfairness of it all, but also to let you know that you do not stand alone now and even if your other half prefers to keep his thoughts and feelings to himself, you don't have to.

So, welcome and rant away!!

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Dec 2017 at 14:35

A lovely update Paul.

Enjoy your Christmas turkey and trimmings and stuttering along or not, I hope you continue to be well enough to enjoy outings on your scooter.

Best Wishes
Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 12 Dec 2017 at 15:46

Thanks for the update Paul. It's good to hear that clinically you feel better on the enzalutamide. Also good that the scans show no change and that pain is lower.

Here's hoping with more time and an increase in the steroid dose your PSA reduces.

It is indeed a very uncertain journey we are all on, these last few weeks have been difficult for so many.

Enjoy your Christmas lunch!

Best wishes, Ian.

Ido4

User
Posted 12 Dec 2017 at 15:52
Enjoyed reading your update Paul. Good luck with the next part of your journey, hope you get some good news regarding your PSA. In the meantime have a great Christmas.

Debbie x

User
Posted 12 Dec 2017 at 17:06

Hi Yorkhull
Thanks for the update. As you say after the losses over the last few weeks it's good to hear something positive. My husband isn't as far down the line as you, only diagnosed in March this year so following what is happening to you with interest. He did early Chemo which seemed to have worked well at the time but a couple of months later his PSA has doubled in 5 weeks so we wonder what the next treatment is going to be. Next Onco visit is March unless she picks up on latest PSA.
I really hope you have a good Christmas and are able to enjoy it.

User
Posted 12 Dec 2017 at 19:20

A 6 week respite and the joy of a Christmas dinner without limits - small things to be thankful for. Really pleased that the pain has reduced recently xxx

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

User
Posted 12 Dec 2017 at 19:26

Hi Paul
Best of luck on the enzalutamide .
I'm now entering my 4th year with it. Psa still down at .05 and I'm still active.
I take it with Prostap so I can't tell which is working.

Anyway best of luck I'm gunning for you.

Paul

User
Posted 12 Dec 2017 at 19:56

Paul, 4 years that’s good. I have been on prostap from the start and still on it. I think it does a job but with limitations once you are hormone resistant. So I had casodex for a year, then dexamethosone and now enzalutimide. So I think because of the way it works and I can only think of a simple phrase as I cannot describe the medical argument, enzalutimide deals with the residual cancer hopefully preventing the metatestes growing further. I doubt whether, given the rises will give me 4 years but hopefully a while longer. Have a good Christmas

User
Posted 14 Dec 2017 at 22:31
I was just thinking today that at least we can relax now that John’s fifth Radium jab has been given Paul. PSA now 77 but no more consults until after the festive season somthat in itself is a relief. Wishing you a very Merry Christmas. If you get Radium it should be a doddle. Talking to the oncologist this week, they say that many oncologists are misinterpreting NICE guidance and waiting far too long to introduce Radium and that it’s effects are better when used earlier. John has done well, apart done the PSA rise, though some of that will be inflammation. Good luck for the next phase of treatment, I’m sure we will be put on a new treatment in 2018.

Take care

Devonmaid xxx

User
Posted 25 Jan 2018 at 21:51
My little scooteraholic,

Great to hear from you as you might remember Trevor was on Zometa for around 3 years and had little or no side affects until the teeth issues . So yes get the dentist appointment first .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jan 2018 at 19:51
Oh good news in a way Paul, no one has offered John Zometa, but then he has had Radium 223.

We see the onco on 26th Feb and expect to start the chemo journey, even though we had said we didn’t want to go down that route. Our oncologist has said he doesn’t think further HT will work at the moment but hopes that chemo will kick start the HT again and maybe it will be available to us afterwards.

Funny to think of you on your scooter!

Beep beep.

Devonmaid

User
Posted 30 Jan 2018 at 20:06

Originally Posted by: Online Community Member

Funny to think of you on your scooter!

Beep beep. 

 

You made me laugh! Paul scooting on his scooter with a camera, your John with his stick and a new dog, my John with 2 sticks and his binoculars - it's like 'Last of the Summer Wine' or Crossroads but I am not sure which :-/ 

 

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

User
Posted 31 Jan 2018 at 22:54

Enjoy the sunshine (when it arrives) trundling along on your chariot !!

We can't control the winds - but we can adjust our sails
User
Posted 31 Jan 2018 at 23:07

Really do hope you can get out and enjoy yourself as soon as the weather gets a bit warmer.

User
Posted 20 Mar 2018 at 15:55

That does seem good news Paul and long may it last. I did a five hour stint yesterday myself. Attending hospital flattens your mood mostly. Good luck with your fight

If life gives you lemons , then make lemonade

User
Posted 20 Mar 2018 at 16:34

Thanks Chris. On the five hour stint, it felt absolutely fine. When you think of the people involved in your care during that time from my oncologist through to the volunteer making cups of tea in the chemo suite people work so hard to make your time go well. So you take a book or in my case my iPad and get on with it. Same happened at radiotherapy on Thursday/Friday people caring about you. I certainly get my money’s worth from the NHS.

User
Posted 20 Mar 2018 at 18:40

Good to hear you had a positive consultation and outcome Paul.
Hoping you don’t have any adverse reaction to the Zometa

Bri

User
Posted 20 Mar 2018 at 18:42
Positive news Paul. Hopefully the pain in your left leg will subside over the next few weeks.

Best wishes, Ian,

Ido4

User
Posted 20 Mar 2018 at 18:49

Sounds good to me Paul

Your be ready for a beer soon

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Mar 2018 at 20:43

Good news indeed x

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

User
Posted 21 Mar 2018 at 06:56
Good news Paul.

You are doing well

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 23 Mar 2018 at 00:13

I hope that you do feel better - I see you have been doing a bit of conferencing this week? We are overdue a catch up and there is a particular piece of work I could do with your advice on - can I come and visit when John is up and about again?

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

User
Posted 01 Apr 2018 at 23:48

I always enjoy your writing, mostly because you seem to find reflection so easy while I have always had to work at it. Odd really since I teach other people to develop their reflective practice skills - a bit of 'do as I say, not as I do' I guess. Regardless, you continue to adapt to life rather than slowly die, it will soon be cricket season, and you are motorised :-) x

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

User
Posted 02 Apr 2018 at 19:07

Thanks Ian for your comments much appreciated.

And Lyn thanks I do think being reflective is a key tonsurvival, for me at last. When I can’t make sense of things life becomes more difficult but given time to reflect I can find a way through. I am getting stronger touch wood each day so beginning to look forward to warmer weather and some outings.

User
Posted 17 Apr 2018 at 17:37
Hi Paul

Glad to hear the pain is under control

Hope you can milk a few more months out of enzo we have spring and summer appearing very soon and nobody wants Chemo then

Good luck with the next test and scans

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 17 Apr 2018 at 18:03
Glad to hear the pain is under better control now Paul. A pity the PSA is still rising albeit slowly.

I hope you have a good summer before any new treatments.

Best wishes, Ian.

Ido4

User
Posted 17 Apr 2018 at 20:07
Paul

Sorry to hear the news is not better, got to admit I know nothing of all the drugs you guys talk about. Hope the scans show no more progression.

Take care.

Thanks Chris

User
Posted 17 Apr 2018 at 21:56

Well said, Lyn. Was attempting to think of some encouraging words for Paul, but yours really hit the mark.

User
Posted 18 Apr 2018 at 21:29

Best wishes Paul and here's hoping for a Splendiferous Summer !!

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2018 at 11:27
That’s good news Paul. Out and about from tomorrow then?

Ian

Ido4

User
Posted 17 May 2018 at 18:45

Good news on a couple of fronts. Long may it continue ...

User
Posted 17 May 2018 at 18:59
Good news Paul

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 May 2018 at 18:38
Good news Paul .

BFN Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2018 at 18:35

Hi Paul,

milk that Enzo for as long as possible .

always thinking of you and Si .

xx

BFN Julie x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2018 at 18:37
Thats a good result Paul

Keep it going

User
Posted 15 Jun 2018 at 17:59
Go well brother

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 15 Jun 2018 at 20:31
Really pleased to see it is holding steady x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jul 2018 at 23:09

You are just one of the Guys that I like to keep my eye on 😉 the other starts with S and ends in I 

Good news Paul on the  psa .

i am keeping fingers crossed that the bladder issues are sorted soon 

small steps lead to bigger steps and you have certainly sorted the small steps .

loads of love as always 

xxx

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jul 2018 at 07:03

HI Paul

Certainly a mixed bag of results for you but good news that the PSA has come down a little.

Let's hope that the appointment for the renal unit comes through soon and that you get some helpful results from that.

It was lovely to meet you at the Mill the other week as I have followed your posts since I joined the Forum and admire the way that despite everything that is thrown at you you crack on dealing with it all and sharing your experience.

All the very best and keep us up to speed with your progress.

Kevan 

 

User
Posted 12 Jul 2018 at 08:33
Keeping my fingers crossed for you Paul
We can't control the winds - but we can adjust our sails
User
Posted 12 Jul 2018 at 11:13

Hi Paul, I follow your story closely. As Kevin has said good news on the PSA front but a few other issues to sort.

I hope you have been able to enjoy some of the nice weather and have been tearing around on your transport!

All the best, Ian.

Ido4

User
Posted 17 Jul 2018 at 18:18

Just seen your post Paul

Keep up the good work , always on the lookout for you

 

Barry

User
Posted 11 Aug 2018 at 14:08
Thanks Ian. It is such a variety of potential symptoms that you can fail to link it at first as I did with the recent anxiety. But once I did it helped in tackling it. Never an easy decision to retire I hated it as I loved my work but having worked on for three years after diagnosis I began to realise through my close colleagues that it was unsustainable. I did take on a new pro bono role which was s good transition but now with the CRF much worse I am stopping this. I have learnt to understand my body and make decisions which preserve what energy I have.
User
Posted 11 Aug 2018 at 22:16
Happy for you to share of course. Just one point the blog was about fatigue not tiredness. Tiredness is a subset of fatigue but this term allows for discussion of a range of issues. Thanks for reading.
User
Posted 12 Aug 2018 at 14:14

Hi Ian, work are suggesting I speak to occ health too but I need to work still at 53 with kids in education still I need the income.  Not all outcomes of such a meeting would work for me so hoping to delay such a discussion as to date the flexibility given me has been perfect. Glad You feel that the Right outcome for you has happened though.

I will use Paul’s blog though as support to continue with the current arrangement as physically I can do big challenges that help me mentally cope with the other  stuff and mental fatigue.

have a Great sunday

kev

Edited by member 12 Aug 2018 at 20:29  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 Sep 2018 at 21:36

Paul

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

Thanks Chris

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 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 03 Sep 2019 at 14:53

A fantastic tribute to an intelligent, thoughtful man who has obviously made a huge impact in the field he worked in. I always valued his posts and blogs.

 

Ido4

User
Posted 03 Sep 2019 at 19:31
Lyn, Many thanks for posting this, and for all your other good work.

I only returned to the Forum just this evening following what now seems like a spookily- timed catch up note from DaveWill - a fellow long term 'surveillance' type. I had not looked on here at all since January.

I actually met Yorkhull - never picked up his real name - when a very small group of us were privileged to gather in Hammersmith a few years back to help spec. out key user principles for the new (= this) revamped forum system. Always very good to put a face to a 'name' and it was of course immediately apparent that he combined earnest determination to carry on regardless against very evident adversity, with a dedicated mission to advise and comfort those similarly afflicted. Yes, he most definitely was a great guy and with very many informative posts to his credit.

Perhaps needless to say, I had no knowledge of his sad passing until tonight - so thank you Lyn.

Please do keep up the very good work of 'oiling the wheels' of this forum - must try get back into it myself, in case surveillance options really are now gaining significant ground within the raft of primary advice to newly diagnosed patients.

Cheers for now / David (AS / WW for 11 years ....)

'It couldn't possibly happen to me....'
Show Most Thanked Posts
User
Posted 30 Dec 2014 at 12:21

I think you are right to move the thread to a new place as you still have so much life in you. 2014 has been a great year for you - trips back to HK after a long time wondering whether you would ever get there again and like John, you have given your daughter away. Blessings x

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

User
Posted 30 Dec 2014 at 12:37
Paul

what a great idea moving out of the dying from section, your acceptance of the fact that you probably will (course there is always a slight chance something else will come along and take you) is plenty for now you can return there when you feel it is appropriate, hopefully a very long time away. Meantime you are very much living with prostate cancer. Your mental and emotional journey so far has been superbly documented, honesty, reality and calm reflection are your forte, sometimes not understood or appreciated. I have got to know you fairly well over the last 18 months meeting up with the gang, going to functions and chatting on here or facebook with you regularly. Not cancer related stuff but the joy of family weddings, travelling to lovely places, photography and the happiness that can bring to mention just a few topics.. I love that you can talk and write so eloquently but more importantly you listen a quality which escapes some who occasionally get carried away and are more interested in what they have to say than what they can learn from by listening and absorbing.

I doubt a day goes by now that I do not think of you and all the other friends I have made through this forum and our commonality with PCa. I know everything I have experienced, read, heard, been taught and thought about in the last 18 months have made me a stronger and better person.

I hope you and your family have a wonderful and prosperous New Year

xx

Mandy Mo

User
Posted 30 Dec 2014 at 19:05

I also think you are right to move your thread Paul, dying from pca yes but certainly not yet you have too much life yet to live. You still have many options left on your journey and I for one hope that you have many years yet. I am really glad the new medication is bringing a respite to the UTIs that you have had, it must be such a relief for you.

As always I will be thinking of you next week for your results.

Happy New Year

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Dec 2014 at 20:53

Appropriate relocation. Hope HT continues to do a good job for you. Well done for not letting your inconveniences prevent you from doing what you do.

Happy New Year.

Barry
User
Posted 30 Dec 2014 at 23:15
Always articulate and able to express heartfelt emotions in a rational way. Paul, you are a top man, I know a certain Top Gun would second that.

Much love and wishing you continued good health in 2015

Love Allison xxx

Edited by member 30 Dec 2014 at 23:15  | Reason: Not specified

User
Posted 30 Dec 2014 at 23:15

Very positive, Paul. I hope 2015 brings you everything you hope for!

Paul

Stay Calm And Carry On.
User
Posted 31 Dec 2014 at 08:02

Great post as always Paul. Definitely the right decision to move the thread. Perhaps there should be a section named 'living life to the full' as many men and their families are on this forum.
Everything crossed for the PSA results on the 2nd. Just a thought but if it has risen will you be getting a scan? If so and this shows identifiable mets it may be worth discussing a bit of RT to zap them. Si is having this in the new year.

Anyway here's to a successful and healthy new year. Speak soon

Bri

User
Posted 31 Dec 2014 at 12:32

Paul, good decision to move post, fingers crossed next PSA is around where you expected it to be..

To you and all I hope the New year will be all that you want it to be

Good luck, keep strong and keep fighting

Ray

User
Posted 31 Dec 2014 at 13:34

Many of my favourite female correspondents, Lyn, Mandy, Allison and Julie saying such lovely things. Thanks so much it's good to get your support and of course everyone else who has responded. Sometimes the journey can get a little lonely and it's good to know when I need it most will come out and support me whatever their own travails. This is the great thing about this community and the people here. Mutual support makes almost anything more bearable.

User
Posted 02 Jan 2015 at 15:05

Hi Paul,

Three years on HT and you still jetting round the world, you have my full respect mate.

I agree about moving out of the dying one, once they renamed it i was gone like a shot, but Julie is still there http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif, so one of us is going to have to go back and get her http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Now someone said they like your new avatar but to me it looks like you are standing in the dock awaiting sentence, are you sure you was a good boy in HK.

Seeing Mandy tomorrow to sort out the January bash

See you soon mate.

Love from Ness & the Girls

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jan 2015 at 15:29

January bash? More info???

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

User
Posted 02 Jan 2015 at 16:16

Well it started last year in Newark its called the "no hope triathlon"

It started as just a bit of fun and i am pleased to announce that our first event was won by Paul (yorkhull)

But then it becomes quite competitive, Mo is now at the gym 5 times a week, Brian has gone away for altitude training and Dave gets suspended from the site ( cant wait to hear why)

So after the 10k swim and the 20k bike ride we finish of with a gentle 10k road race, we then all meet in a local vegetarian restaurant for some nice cabbage soup followed by a delicious Tofu dish all washed down with a glass or two of water.

Lyn you are more than welcome to join us, but i must say what started as a fun event has now turned quite competitive.

If i can find some pictures i will post them up

 

Si xx

 

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jan 2015 at 17:13

Well after three years my CIRCLES just got a little smaller. Had my appointment today, met a new uro who confirmed that my PSA had now risen to 42 and the threatened casodex (50g) starts from tomorrow. It was a bit of a jolt at first as I had been to eight successive appointments in three years and, despite the ups and downs, treatment had continued unchanged. Now I am starting down the road a bit it was a shock though I had half expected it. My main worry relates to the additional side effects and having avoided hot flushes so far whether they might now rear their head or that my level of fatigue might increase impacting on my work. Still I guess I have to suck it and see!

Interestingly this new guy went on to say if/when casodex fails I would move onto aberiterone next not chemo which I had anticipated. It was his view that this is now the preferred approach? Not sure, any views? Anyway he has also referred me to the oncologist so I will pick that up with her when that appointment comes through.

I find it unsettling to have another uro, my third in three successive consultations, and I am unsure of my new one, simply because I don't really know him and his ideas seem to take a different path.

Anyway there it is, life moves forward and in 2015 looks like it will be a bit more complicated for me.

User
Posted 02 Jan 2015 at 18:06

Hi Paul,

Sorry to hear about the rise in PSA,

Having had both treatments and had good results with both. I would go with Abbi every time.

All the best

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jan 2015 at 23:34

Paul, did the uro offer you any RT to the breasts before you start? Do you feel brave enough to put the casodex off until you have seen the onco? I feel anxious for you that the casodex route is being determined by someone who only just met you :-(

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

User
Posted 03 Jan 2015 at 01:03

Paul

Good luck with your treatment. Hope it does what it says on the tin!

Paul

Stay Calm And Carry On.
User
Posted 03 Jan 2015 at 09:42

Hi Lyn,

I guess this has been on the cards since last June and I did resist on the last two appointments. I was not offered RT for the breasts, not sure I would want to go there unless problems get considerably worse. Have had sore nipples for last couple of years but it has been manageable. I found it more difficult because he did not really review my last three years at least with me. He may of course have thoroughly read my file and he is following what I discussed with two previous uro's. Overall I think it is time to try this medication. I was pleased that he was happy to facilitate aa appointment with an onco, which I haven't had. He also wants to see me in two months so this change will get checked out quickly.

User
Posted 03 Jan 2015 at 12:24

Hi love, I was thinking more that we only found out too late that RT doesn't work unless it is done before the casodex begins :-( I am pleased that you are finally seeing an onco though - I find it mind boggling that you have had to wait this long!

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

User
Posted 03 Jan 2015 at 17:31
Paul

May I add to what Lyn says. john now has very large lady style breasts and was never offered RT, he absolutely hates them and it makes his life a misery as they are so large and pointy. I'm not being funny, it's grim stuff trying to hide them. We have tried elastic bandages and tight vests (it all hurts) and have now invested in expensive waistcoats a size larger than needed, to cover them. It's not nice for a man to have boobs, they are NOT Moobs, they are full on lady breasts. Just a warning. Mind you they have been made far worse by the Stillbestrill. He is hopeful that chemo will make them go away, but I suspect not.

On the subject of Abbi over chemo. Many people believe that chemo is best done whilst well and then followed by Abbi or enzalutimide. Many believe that Abbi should be offered first but the way we feel is that if we go down the chemo route, we still have Abbi or Enzalutimide to come whereas if we go down the Abbi route we only have chemo because Enzalutimide might not be available (not sure about the latest NICE guidance on it after Abbi). It's a minefield.

PS did I read that right? Your PSA is 42?

Best wishes

Allison

User
Posted 03 Jan 2015 at 18:22

Thanks Allison,

I think my ,boobs' cannot get much more pronounced anyway and I don't feel too concerned about them. I am a big guy so it's par for the course really. I have started casodex so I will see if it develops or changes at all!

I think the decision re Abby first or not is something I had not anticipated as at my previous meeting with a different consultant he had said chemo next! I suppose I did not know whether this new guy was more up-to-date or was new to this work as a new consultant. He has come from Birmingham so he may be bringing new ideas. Anyway I shall await a meeting with an onco and chat it through with her and then go back to him in two months. The casodex journey has begun!

And yes my PSA is 42? Is that an issue?

Edited by member 03 Jan 2015 at 18:25  | Reason: Not specified

User
Posted 03 Jan 2015 at 21:14
Hi Paul

Well it is much higher than John's was even on diagnosis (25) and I don't think John's has gone higher than around 12 before Casodex was introduced, might even have been 9. It's currently around 7.7 I think ( or was before this latest issue). Yours seems to have been allowed to get very high before changing treatment. I remember thinking that last time I read your update. Any reason why it has been allowed to get so high?

I'm sure your own consultant will have taken your previous history into account and maybe your wish to continue working has been a factor. Casodex can knock your socks off even further than just the jab. I wish you well my friend, just thought it was a bit high personally, but we are all different.

Love

Allison

User
Posted 03 Jan 2015 at 21:49
Paul

I am a ittle sad to see that you have to have casodex added to the mix, as you know MIck could not get along with it at all it made him like a teenage girl with PMT as well as tired and much worse muscle aches. Having said that it is almost certain he was hormone resistant from the get go so adding Casodex just did not help it was just another drug to blame for the myriad of side effects he was having at the time. You will know quite quickly if you do not take to it well and at least there are lots of other options. Judging by this site many more men have a good response to it than those that do not.

As for Abbi before chemo, if the Oncologist agrees (when you see her) and if casodex does not do the trick which I think it probably will for you, then I would go down that route. Chemo is more likely to affect your abilty to work and would definitey prevent you travelling during the treatment.

I am finally back at home and about to post a new thread re the Newark get togehter, first I want to ring Julie so it may be late when i do post.

looking at second weekend in February.

xxx

Mandy Mo

User
Posted 03 Jan 2015 at 23:07

Thank you, Paul. Your post meant a lot to me.

Best regards,
Lawrence

"I am not young enough to know everything."

Oscar Wilde

User
Posted 03 Jan 2015 at 23:16
Allison,

I think the chronology makes it more explicable. In June 2014 I had a PSA of just under 20. We talked of casodex then and I was reluctant. I was well, had no signs or symptoms relating to the illness itself and my double time was upwards of 7/8 months, also because of UTIs there was concern the PSA was not fully accurate. Given that we decided to wait and see. Come October I had only gone up to 27 so my consultant was happy to wait. I was more than happy with this as I had my daughter,s wedding and then a seven week work trip to HK and NZ. I thought that casodex might jeopardise this. He agreed. So it's only this continued rise which has forced the issue now,

I had a PSA of 7.5 on diagnosis and though it went down to 1.06 after the initial HT it is has slowly risen over the following nearly three years. I had a bone scan in May 2013 which showed a slight reduction in bone met spread so I guess there was a belief that things were reasonably settled. I have always assumed that my PSA would rise as I still have my diseased Prostate as they do nothing to it as you know if you have bone mets and therefore the PSA would always show. I thought I might have more scans but so far they have resisted this, saying that my own wellness and my PSA are sufficient markers. I will discuss this with an onco when I get an appointment.

It's hard to make a judgment but I feel that the slow rate of increase and it's still only doubling every seven months or so has influenced the treatments. Be grateful for any further thoughts.

User
Posted 03 Jan 2015 at 23:26

Thanks Mandy. I am a little nervous of casodex given its fairly bad press on here, though I guess if it causes no problems people do not talk about that. More than that I guess it's a slight movement forward towards castrate resistance and the sticky road after that. So that is unsettling but for now I can continue as before unless or until side effects grow!

As to Abby before chemo the debate on this does seem very confused. I can see the 'benefit' of chemo whilst you are still well as it may be better tolerated. From my point of view I would take time off work (for six months this is on full pay) and see it through. I would then have Abby or enzo in the box. Having said this if Abby gave me another year or more before chemo there are attractions to that if medically this is now the better option. But I have now heard views both ways, not least from my two uro's so it's hard to know what is best.

Look forward to hearing from about the meet up too.

User
Posted 03 Jan 2015 at 23:38

From my limited experience it seems in Doncaster and Sheffield that the emphasis is on velocity rather than the numeric value of the PSA.
The oncologist told me they would rather avoid the toxicity of HT until it is definitely required.
From what you have said about your rate of increase Paul that sounds about right. However, I would ask for a scan as that does seem overdue.
Going to send you a message

Bri

User
Posted 04 Jan 2015 at 09:03

Hi Paul,

Some data on Abiraterone, it is two years old but still interesting reading.

Si

 

On average Zytiga works for 1 year.

When used earlier in the treatment of prostate cancer before chemotherapy the trials showed that Zytiga worked for an average of 2 years.

If used before chemotherapy Zytiga works for 2 years.


The longest Zytiga survivor is 8 years from the Phase I clinical trials in 2004.

There are several 6 year survivors still taking Zytiga from the Phase II clinical trials.

There are hundreds of 4 year survivors on Zytiga from the 1000 cohort of the Phase III trials.

I hope this helps you to understand the soughts of responses that you get with Zytiga

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 Jan 2015 at 09:58
Paul

I think for us, since a friend had chemo and then was well on Abby for about 2 years (he sadly died of a cardiac arrest, possibly caused by the Abby, hard to be sure) this seems the right route. Rob has mentioned a few times that HT can start to work again after chemo, and the big issue for us is that maybe by the time chemo is over there will be more data as to whether abby or enza is the right course of action. It's a tough decision, but ours is made, John is now 65 and has been on HT from four years, we'd rather he faced chemo now than later. You pays your money and takes your chances I suppose.

On the PSA issue, I guess I felt nervous because of Top Gun, he left his to get to 54 (admittedly he was on intermittent HT and was off it at the time) before he went back on and then became ill. I don't know what his doubling time was but John's is 6-7 months, he is a Gleason 10 so it is assumed that the Cancer that is growing is likely to be the bad kind. Does anyone know if doubling time and Gleason score have any correlation?

John was well on Dec 1st at our Onco appointment and became unwell around Xmas eve, though there were indications that his Prostate was once again growing (nocturnal visits) during December. He has already had Casodex (didn't work at all) and been on Stillbestrill for 15 months.

Anyway Paul, I suspect Casodex will work for you and I sincerley hope you can continue with your work. As we have discussed, your consultant knows your case very well and their advice is the one you need to heed. Good luck my friend, please let us know what happens at your next test.

Lots of love

Allison

User
Posted 04 Jan 2015 at 12:05

John hated the casodex enough to stop early but was in a very different situation to you and I suspect the side effects that he struggled so much with have already become your new 'normal' Paul. As far as I can remember from past members, adding casodex to existing HT tended to show itself as an increase in breathlessness rather than anything else.

Who goes to your appointments with you? Do you want Mo and I to come along to intimidate the uro for you?

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

User
Posted 04 Jan 2015 at 13:41
Ha Paul that would be some shock for your Uro/onco xxx
User
Posted 04 Jan 2015 at 13:47

Formidable 😬

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

User
Posted 04 Jan 2015 at 16:21

Sorry for not replying earlier I was getting over the mental image of Mo and Lyn confronting my uro! It disturbs the mind! Interestingly for an assertive man at work I am quite quiet and reserved in front of doctors. But for the moment I will keep that one in the locker! I go on my own. I did not want my children to have to go through this though Hannah would have rivalled Lyn for assertiveness. joe would say little!

If I am dilatory in reply it's because I am spending considerable time travelling down to suffolk. My mum, who is 91, had a bad fall just as I was returning to the UK and so first hospital, now respite care has meant frequent trips down the A1. As my brother is away for a month I shall be doing this regularly for Jan and Feb. Just hope the casodex does not strike me down!

If I get no satisfaction from my medics I think just threat of you two would be enough! But I may take you up on it one day!

User
Posted 04 Jan 2015 at 21:41

Hi Paul,

I am sorry to read about your PSA rise, not what you wanted to here but as you say you had half suspected as much. I have been a bit slack on the forum and have only just caught up . I cannot offer advice on the different treatments but I would gladly join Lyn and Mandy in a show down with your Uro. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

Sorry to hear about your Mum it is always a worry when they get to such a grand age and then have a fall. Life always seems to throw everything at once at you.

Don't forget if you would like the three Muskateers at your next appointment you only have to ask.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jan 2015 at 17:29

Just spotted your response Julie, thanks so much given you have more pressing problems. Perhaps I could send all three of you and not go myself!

User
Posted 20 Jan 2015 at 11:26

GOOD NEWS DAY!! I had my routine diabetes appointment today which unfortunately showed another rise to 59 so I was despatched to the dietician for a lecture on healthy eating. Although when she weighed me I had lost half a stone since I had last been there so I put her on the back foot. All my other measures were fine!

So my wonderful consultant always takes an interest in my PCa and has a PSA test done alongside his tests. It was just 13 days since starting casodex so I was hoping that the rise might have begun to slow down or stop. What a surprise to learn it had gone from 42.87 down to 22.67, almost halving in less than two weeks. I feel like having a double portion of salad for lunch! Six more weeks before I go back to my uro so hopefully this trend might continue. Not bad outcome though!

User
Posted 20 Jan 2015 at 11:52

Great news Paul,

Now you mention the salad after i forced http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif you to eat a roast lamb Sunday dinner.

Salad it is next time.

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Jan 2015 at 11:54

Really Great News Paul,

Hope it continues.

Best Wishes

Steve

User
Posted 20 Jan 2015 at 12:27

Excellent. Keep it up!

Stay Calm And Carry On.
User
Posted 20 Jan 2015 at 12:31

Brilliant Paul...I will raise a glass of slimline tonic for you ;-)

Now the challenge is too get it lower than your starting PSA at dx

Bri

User
Posted 20 Jan 2015 at 12:33
Very good to hear Paul, keep it up xx
User
Posted 20 Jan 2015 at 12:43

Brilliant news Paul, Trevor did very well on the Casodex bearing in mind his high starting point at 13000 going down to 15 so if it works like that for you and it looks like it might then you should be in the 0000 before you no it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2015 at 12:51
Brilliant news Paul. I added Casodex to the mix a month ago and also enjoyed seeing an 83% decline in PSA. Long may all therapy permutations help each one of us!

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 20 Jan 2015 at 13:19

Thanks Steve, Allison, Bri Bazza and Paul for the kind words, I have been pleasantly surprised by this.

Si, I was asked by the dietician to tell her what I ate the previous day, thank goodness I had beans on toast last night. Loads of succulent roast lamb, roast potatoes to die for, roast veg, Yorkshire pudding, rich gravy etc etc may not have gone down well. She said I should try using a smaller plate, I would have needed thre plates to balance that wonderful meal!

Julie, that was an amazing drop for Trevor, so I feel better about casodex now than I did when I started. I was (am) concerned about its negative press and increasing side effects but two weeks in I have not noticed any difference.....yet. I have calculated that if I have the same proportional response it will be a very small number indeed. Lowest I got was 1.56 after diagnosis and HT started and it has risen, very slowly over the three years. I assume my bone mets must be behaving themselves!

Edited by member 20 Jan 2015 at 13:20  | Reason: Not specified

User
Posted 20 Jan 2015 at 14:19

I shall be having a whopping slab of fruit cake to celebrate your news !!

 

Fiona. x

User
Posted 20 Jan 2015 at 15:12
Paul great news, I will dedicate my gym session this afternoon to you and celebrate my HBAIC of 41 with a glass of diet bitter cranberry xxx

Mandy Mo

User
Posted 20 Jan 2015 at 15:40

Now fruit cake or diet bitter cranberry? I'll leave the fruitcake to Fiona and the cranberry juice to Mandy but thanks for your messages! Now where's that chocolate!

User
Posted 20 Jan 2015 at 17:29

Diabetic chocolate, of course :-0

All that research about diet being the reason that men in the Far East have less PCa .... I wonder if your long trip is the real reason for falling PSA although I guess you would have had to eat an awful lot of sushi. Congratulations my dear - this is indeed a good day!

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

User
Posted 21 Jan 2015 at 00:11

I am now about 18 weeks from my last UTI and I wondered about that but it seems too coincidental and such a big swing it must be the casodex!

User
Posted 21 Jan 2015 at 10:10

Paul,

For whatever the reason long may the good days continue.

Ray

 
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