Ever Decreasing Circles part three

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.

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.

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.

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.

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

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'

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

Fiona. x

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

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

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

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!

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

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/

BFN

Julie X

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

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.

... & 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 ... 

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

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

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.

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

Best regards,
Lawrence

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!

Really Great News Paul,

Hope it continues.

Best Wishes

Steve

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

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

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

Best Wishes Sandra

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

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

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

Bri

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

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

Best wishes.

Paul

Kev

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

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

Love Allison

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

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!

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

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 👼

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

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?!

Xx

Mo

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

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

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

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

Lyn xxx

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

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.

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

Xx

Mo

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

Good luck tomorrow my friend x

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

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

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

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

Fiona. x

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!!

Good news, enjoy the Hong Kong trips!

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

Lesley

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

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

Very pleased for you Paul.

End results make the treatment worthwhile eh !

Enjoy your trips

P

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

Thanks Chris

Really good news that the treatment has worked.

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

Take care.

Steve

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

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

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!

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

Happy Christmas Paul and thank you for sharing

Bri

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

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

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

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

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!

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  

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

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

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.

BFN

Julie X

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

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

Take care

Bri

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.

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

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

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.

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

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 😎

just read it myself cheered me up no end

regards
nidge

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.

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

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!!

Marvellous!! Good news for you all round.

Well done, Arthur

Glen

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

Best wishes for the future.

Kevan

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

Kev

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

Lesley x

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

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

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

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

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

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

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

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

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)

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

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

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

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

Thanks Chris

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.

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.

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

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

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

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

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.

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

Take care

Lesley xx

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

Love Devonmaid xx

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

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

Paul

Great to hear your news, hope it continues.

Thanks Chris

Keep the good news coming Paul

Bri

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

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

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

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.

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.

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

Take care

Devonmaid xxx

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

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

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

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

Bri

Sounds good to me Paul

Your be ready for a beer soon

You are doing well

Regards

Dave

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

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

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

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

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

BFN Julie X

Keep it going

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

Just seen your post Paul

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

Barry

Paul

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

Thanks Chris

Bri

Good night my dear friend , your circles have come to an end . 

BFN XXX