Ever Decreasing Circles part three

User

Posted 08 Jan 2016 at 08:36

Fingers crossed for you, Paul, hoping that Enza works as well for you as it's doing for Tony. We have had a lovely happy Christmas with the family, and could almost forget that there probably won't be one like that again. Enza has brought us an extra period of normality - and it is a such joy and a privilege just to do ordinary things together. Hope it serves you as well.
Marje

User

Posted 08 Jan 2016 at 08:50

As usual, you are in my thoughts Paul, as are others in a similar situation.

My head is so full of you all and it leaves those of us looking on feeling useless, well it does me anyway (shouldn't make sweeping statements!)

I really really hope that the Enzo suits you and benefits you.

We can't control the winds - but we can adjust our sails

User

Posted 08 Jan 2016 at 18:49

Blinking heck Paul, I'm so glad you followed this up. I have to admit I'm on these things every step of the way and will ring the specialist nurses without delay if i think something isn't right. We have just had John's lastest bone scan, it was a tough day for him because as most people know, you have to go twice, first for the injection and then three hours or so later, for the actual scan. Since he is only a week post op it was a real challenge, but he felt he wanted to do it as goodness knows when we'd get another appointment. I guess we won't hear anything until our next onco appointment on Feb 8th but I really feel that we need a change of meds this time as I'm sure that the prostate is growing pretty fast.

You put things so eloquently and somehow seem to encapsulate our own thoughts. Wishing you well my friend.

Lots of love

Allison

Edited by member 09 Jan 2016 at 21:08 | Reason: Not specified

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. 🤐

NEVER LAUGH AT A LIVE DRAGON

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

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

Don't deny the diagnosis; try to defy the verdict

User

Posted 09 Jan 2016 at 10:15

Originally Posted by: Online Community Member

his walking and pain is still good. A little more of a shuffle but still on paracetamol

Julie - I've been lucky in that since being diagnosed I've had almost no bone pain. However, I have become 'creakier' in the hips such that Mrs_ColU has had to walk slower when out with me. I think 'creakier' as I put it and 'a shuffle' as you put it may be similar. My assumption has been that this is probably caused by the HT rather than the PCa.

In early December 2015 I developed a sore right shoulder. My GP prescribed Naproxen (an anti-inflammatory) and Omeprazole (something to stop the Naproxen from upsetting my stomach). I took them for six days and they magicked away the problem with the shoulder. To my surprise they came with a Brucie Bonus in that my creakiness seemed to disappear as well and all of a sudden I was bounding up and down hills like a young gazelle leaving Mrs_ColU in my wake. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

The effect is gradually wearing off now but I intend to ask my GP if I can use them again on special occasions such as prior to a walking based holiday.

Could this be worth a try for Trevor?

User

Posted 09 Jan 2016 at 13:05

Nice to hear from you Julie, let's hope our wheels and circles don't get mixed up could be a right mess!

I think my walking problems stem from where my bone m are located and in particular the spread on my pubic bone. On the scan this is the deepest black. This is where I had RT and within 59 yards I can feel it which discourages walking further. Also both thighs have bone Mets and they would ache much more without pain killers. So though RT ameliorated the extreme pain it's basically a weakness in my body! I guess where you get the heaviest deposit this will produce the problems. I have no strength in my right arm and this again is down to mets on my right shoulder. Because it's not load bearing I can manage that better providing I do not try to use it or lift stuff.

The PSA numbers are also interesting though I have concentrated on pattern rather than size. I have had low numbers since diagnosed only 7.5 but Gleason 9 and bone mets but relative to that it has suddenly grown again. I guess it's time for enzo.

Thanks Si and Chris too. As the week draws to a close the main pain in the middle of the back has started to recede. It's been a tough week but I am hoping the rest I have had will help me through a busy two weeks.

Could be a bidding war for the book assuming it ever reaches the public. But I shall try and keep one by for you Julie!

Edited by member 09 Jan 2016 at 13:06 | Reason: Not specified

User

Posted 09 Jan 2016 at 13:37

I think my wife would be fascinated . She got an honours degree later in her years in English Lit / Creative writing. If not for personal circumstances and the ease of income with dog grooming , I think she would be a literary giant haha .

User

Posted 09 Jan 2016 at 20:41

Well I cannot promise a wonderful novel or indeed finishing it at this stage. But it was a personal ambition and I have written about 60000 words so not quite half way there. Hope to really get going after I retire.

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

User

Posted 09 Jan 2016 at 23:36

You are too kind , Mo!

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 06:26

Nice to hear this Paul. And nice comments from your Onco.

Good news after the batting collapse.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 Jan 2016 at 08:43

Thanks for the update, Paul. It must be reasssuring to know that there's no urgency about the next step. In Tony's case, PSA had risen from 18 to over 130 in three weeks, so there was no time to hang about. He seems to be on a fast-track version of Pca, I'm afraid. But all is well at the moment - today is blood test day, with result tomorrow, so we are apprehenisve, although hoping for another good result. As you say, we have to make the most of the good times, without looking too far ahead.

Marje

User

Posted 27 Jan 2016 at 09:25

Great news Paul, I'm very pleased for you.

More time, drug free, to get on with the book !!

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 27 Jan 2016 at 09:26

Good luck with the blood tests tomorrow piglet. Fingers crossed for you

We can't control the winds - but we can adjust our sails

User

Posted 27 Jan 2016 at 09:48

Hi Paul

That mostly sounds reassuring, another little ovoid in the latest circle.

xxxx

User

Posted 27 Jan 2016 at 09:50

Glad that it's better than expected. Wishes to you Paul

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