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User
Posted 01 Jun 2015 at 21:45
Well today was our day for seeing the oncologist and moving onto another form of treatment, however, amazingly, my OH's PSA has come down from 8.7 to 2.8 in the last three months. We were completely gobsmacked and can only assume that the RT given in Feb/Mar for a nasty met in the hip is responsible.

Neither of us can quite believe it, we'd like to pinch each other but those days are over ....

Seriously, it was the nicest shock I've ever had. Who would have thought, 4.5 years since diagnosis, mets in lymph and bone, Gleason score of 10 and still not had to have chemo. It seems that Stillbestrill works very well for my darling husband.

We were told that we may be offered abiraterone and enzalutimide together if the stampede trial yields the results excepted, when the time comes to change treatment, but that's at least another three months on.

I think I need to buy a lottery ticket.

Lots of love
Devonmaid
User
Posted 17 Jul 2016 at 22:08
Good evening my fellow forum members, today has been our 40th wedding anniversary. I was a very young bride of 19, back on that boiling hot day in 1976. I am grateful we have made it to this day, certainly five years ago the odds were stacked against us. We were not able to go out to celebrate because John is still unwell following his RT but it's a major milestone and we managed to simply be happy to be together after all this time and a horrible cancer diagnosis five (nearly six) years ago.

I've been trying to practice gratitude, since I do believe it makes you happier and I am deeply grateful for those 40 years (where did they go?). I'm not greedy, I only want another 40, it's not tooooo much to ask is it?

No seriously, I did manage to raise a glass or two thanks to my lovely family, John doesn't drink these days and drinking alone is not much fun but someone had to do it. I chose a wonderful man all those years ago, when I was a green WRAF lassie and fell for the lovely bloke in the airforce blue suit (ok uniform), with the lush tash and leather bomber jacket. He hasn't changed really, though the hair is now white and the bomber jacket got lost years ago.

For those suffering loss today I have shed a few tears for you (and maybe a few for us too), but still think it's quite an achievement these days, to still be happily married after all these years.

Love to you all

Devonmaid xxxxx
User
Posted 23 Feb 2016 at 19:17
Oh George
I did wonder about the lack of posting here from you, I hope you are improving my dear friend.

Well wonder of wonders, it's John's birthday day and ...... He passed some urine through the urethra. Boy did it hurt (and continued to hurt all day) but a huge step forward and hope reigns eternal.

Lots of love
Allison
User
Posted 01 Jun 2015 at 21:45
Well today was our day for seeing the oncologist and moving onto another form of treatment, however, amazingly, my OH's PSA has come down from 8.7 to 2.8 in the last three months. We were completely gobsmacked and can only assume that the RT given in Feb/Mar for a nasty met in the hip is responsible.

Neither of us can quite believe it, we'd like to pinch each other but those days are over ....

Seriously, it was the nicest shock I've ever had. Who would have thought, 4.5 years since diagnosis, mets in lymph and bone, Gleason score of 10 and still not had to have chemo. It seems that Stillbestrill works very well for my darling husband.

We were told that we may be offered abiraterone and enzalutimide together if the stampede trial yields the results excepted, when the time comes to change treatment, but that's at least another three months on.

I think I need to buy a lottery ticket.

Lots of love
Devonmaid
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User
Posted 01 Jun 2015 at 22:14

Allison,


That's fantastic news!


Really pleased for you both.


Mondays will become your favourite day of the week.


Don't forget me if you win that lottery, you're on a roll.


Steve x

User
Posted 01 Jun 2015 at 22:17
What wonderful news for you both, long may it continue

Arthur
User
Posted 01 Jun 2015 at 22:44

My Goodness, well I'll go the foot of our stairs or what was that about the front gate, WHAT !!!!! I had to read this twice Alison and John SOOOOOOOOOOOOOOOOOOOOOOO Happy for you Guys. What ever is working stick with it . Maybe it's Granparentism  wonderful news.  I have to say it again.


WAY TO GO X


What a start to the week.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jun 2015 at 23:01
Allison
I am so very happy for you and John, whatever it is doing the trick meds, being a grand daddy or just a minor miracle enjoy the heck out of it.

xxx
Mo
User
Posted 01 Jun 2015 at 23:34

Lovely news my friend; although you know that I get nervous around miraculous drops, you are so well-tuned into J that you will spot any problems quickly I think

Enjoy your beautiful family during the gorgeous weather that we are supposed to be getting :-) xxxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Jun 2015 at 23:40

After reading my messages following my appointment and feeling a bit down I got such a great lift from your news. John's news often seems to parallel mine so it was such wonderful news to hear your progress. Maybe I should stop casodex for sillesbril? So pleased for you both, long may the resistance continue. I feel better already!

User
Posted 02 Jun 2015 at 07:08

thats really good news on my first post read of the day


 

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 02 Jun 2015 at 07:08

Brill news for you both. Keep kicking it's butt

Bri

User
Posted 02 Jun 2015 at 09:23
What a lovely start to a new month, excellent news.

Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 02 Jun 2015 at 09:51

Brilliant news for you, so very glad, long may it continue !


 


Fiona x

User
Posted 02 Jun 2015 at 10:01

So so pleased for you both Devonmaid.
The sort of news that's boosts ones belief that there is some light at the end of the tunnel. Long may it continue to work for you.

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2015 at 12:59

Hi Allison,


What great news, i remember you mentioning that Chemo was on the cards soon, it seems like a lifetime ago.


Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jun 2015 at 13:44

Hello Allison
what lovely news you have and long may it continue.

Your news also gives me so much more belief as I start a similar journey.

Paul

User
Posted 02 Jun 2015 at 13:52
Hi Alison
This is fantastic news, was lovely to read your post. Hope Jon is feeling well in himself. Bob is still responding well to stilbestrol also despite a few other minor problems(must update my own thread soon).
Hope you have some nice summer holiday plans to enjoy.
Lesley xx
User
Posted 02 Jun 2015 at 20:27
Lovely news, Alison, so pleased to hear, love Janet, x
User
Posted 04 Jun 2015 at 09:32

Good news for a change Allison, keep it up!


Chris

User
Posted 04 Jun 2015 at 12:33

Always great to hear good news. Hope you enjoy your summertime weather. Cheers Georgina

User
Posted 04 Jun 2015 at 22:16
I was thinking today I wonder why Stillbestrill isn't used more often. It's been very effective in John's case and has kept the tool kit full of options. May be it isn't a very sexy drug, what with all the new ones coming on.

I must admit we are starting to wonder if the PSA result was accurate and not an error. Just to be sure we will take a further test in a month or so. If he hadn't had recent RT I would be concerned about the drop (as Lyn gently pointed out it doesn't always auger well) but we really need to be sure it was 2.8 and not 12.8.

One thing we didn't get cleared up was a nasty pain in the side that is getting more insistent. No one has taken it seriously and although it doesn't bother John all the time, it can be severe. Urological symptoms are starting to appear too, but we've been so lucky to have avoided them for so long, the specialist nurse said a rebore might be needed. Sounds unpleasant to say the least but we'll hold off on that until it's necessary.

Cheers all
Devonmaid xx
User
Posted 04 Jun 2015 at 23:22

I did ask about stillbestrill when I had my meeting with T, and she said simply they did not use it any more. She recalled it was used early in her career but had been superseded! Interesting!

The pains are worrying and partly because what causes them is so unclear. I think that is why I have been concerned about my leg pain, I just want to be sure what the cause is. But sometimes they simply don't seem to know and it becomes hard to push for answers. Hopefully John will get some and hope the PSA was not a rogue one!

User
Posted 09 Jun 2015 at 20:00

Allison, John,


 


Fabulous news!  Out of the blue!  Wonderful.  So pleased for you both.   I am lost for words.... when Di told me, i thought the PSA had gone down by 2.8, not down to 2.8!


 


Fingers crossed for the next test, and look forward to seeing you both soon!


Love to you both,


Peter

User
Posted 10 Jun 2015 at 11:38

Dear Allison and John,

What incredible news! The best I've seen on here in a while.

In fact, 'incredible' is an understatement.

Lynn and I are delighted for you both. So sorry you can't celebrate with us all on 20th June, but please enjoy the family wedding and we'll see you at The Mill next year without a doubt!

Now who will read Chris Boothby's naught verses THIS YEAR?

Your reading of it last time round was unforgettable!

User
Posted 10 Jun 2015 at 13:03

I'll read them as long as he doesn't say anything cruel about me!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jun 2015 at 13:10
Originally Posted by: Online Community Member

I'll read them as long as he doesn't say anything cruel about me!



You think he would dare???!!!
User
Posted 10 Jun 2015 at 15:29

Would Chris write anything cruel about you, Lyn?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


 


Nah, but he would definitely try to embarrass you, and we all know that's impossible.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


 


Lord knows what ditties he has in store about us all.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


 

User
Posted 10 Jun 2015 at 21:51

Chris is irreverent and fearless - he will take anybody on, I think


Still happy to read though George - and I have tasked Steve with taking some action photos of me for my website so this will kill two birds with one stone :-0 

Edited by member 10 Jun 2015 at 21:53  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jun 2015 at 22:32
Now Lyn
If you do it don't forget to pause at just the right moment and look slightly coy from time to time! You know you can xxxx
User
Posted 11 Jun 2015 at 10:56

YES!!


 


You'll be perfect Lyn.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


 


A 'master class' from Allison.


Who can forget those coy looks as she read out such verses as 'George and his Virgin troubles' and worse.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


Mind you, I could swear she blushed from time to time!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif


 


We're all looking forward to this!


 


 


See you soon,


 


 


George

User
Posted 11 Jun 2015 at 19:00

Do I have to do it naked like Alison did - or can I wear some clothes? The weather forecast isn't great :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jun 2015 at 19:05
Lyn this naked thing is becoming of interest, I know I suggested you go to Whitehall naked to get the attention of government officials who could sleep through Natalie Portman pole dancing, but at the B2PCa gig Mmmmmm
User
Posted 11 Jun 2015 at 19:32

Gosh - when did Natalie Portman pole dance for MPs?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jun 2015 at 19:32

(guys, THIS is how those rumours in the media begin ..... )

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jun 2015 at 23:04
Argh!
How drunk was I? I didn't even know I was as naked as a jay bird doing my reading. That'll teach me to drink with the once legendary Pierre le Broque. No wonder I was blushing George, I had nowhere to hide the script!


Enjoy the weekend at MOS, I'm so sorry that I have to attend this family wedding and cannot be with you, I'll sorely miss you all. mind you my liver might just be glad (the wedding will be genteel and I shall be on my best behaviour, well,I'll try anyway.

Lots of love
Allison xxxx
User
Posted 11 Jun 2015 at 23:16
Going to miss you Allison but should get to see you soon when I am in Swindon xxx
User
Posted 01 Dec 2015 at 21:39
It's been a while since I updated our journey, it's been a tale of two halves really, first part of the year was pretty awful pain wise then RT and pain all gone and PSA dropped like a stone, but of course these things don't last in our situation and it has been steadily rising (not big numbers yet but concerning all the same). Well we'll find out on Monday at the oncology appointment exactly what's happening on that front. We do believe that it will have continued to rise as the symptoms of pain have been coming back. Anyway we don't know yet so no point in worrying about it.

Urology problems have been the main issue to deal with and we are back under the urologist for that. The usual stuff really, severe urgency with accidents, pain, bladder not emptying etc. We saw the urologist this morning and another bladder scan has been ordered urgently (that means 10th Dec of course). This is causing issues with being able to go out, which is a bit demoralising.

Second order (I suppose) is the cancer, constant pain is being felt in the side and back ribs and spine, who knows what's causing it but I guess the PSA rise will give the Onco and us, some clues. The most difficult thing is severe breathlessness, probably caused by anaemia, blood count is 10.8" not too serious but it's dropping and that's a concern.

So generally, we are a bit worried but presumably Momday will reveal more.

Best wishes
Devonmaid
User
Posted 01 Dec 2015 at 21:53

Would like to wish you good luck for Monday.Hope this is just a blip on this long road

User
Posted 01 Dec 2015 at 22:32

Even though I have just done my daft and silly post ( I hope it has made you smile) life with our men at the sharp end is pretty tough. Not for the same reasons but we spent so many months with T having breathing problems and I totally understand how that impacts on everyday life. We so often talk about Q.O.L on here and being breathless is awful, I am sending so much love to you and John .


Thinking of you both .


BFN


Julie x


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Dec 2015 at 23:50
Hi Allison
its tough to watch our loved ones with the breathing problems.
Just wanted to send you both my best wishes for Monday.
Carol x
User
Posted 02 Dec 2015 at 05:24
Allison
I will be thinking of you as always, this has been a long and winding road for you ,John and your family.
Many dark days but thank God some truly amazing days as well.
I will be down around 22nd through to 28 or 29th. So will call you before then so we can get together for a catch up and big hugs.
All my best wishes for the Onco review
Xxxx
Mo
User
Posted 02 Dec 2015 at 06:13

Thinking of you both Allison and sending as many positive thoughts as I can for the Monday appointment.

My very best wishes to both of you

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2015 at 08:49

Also sending much love to you and John. It's easy to forget that even if there isnt a regular update, the symptoms and side effects of PCa make life hard going at times. Thinking of you both,


 


Fiona.


 


 

User
Posted 02 Dec 2015 at 21:02
Hi Allison,
Lovely to see your update though am very saddened to see your husband is suffering. Often wonder how things are with you as you are at similar stage of journey to us.
Quite concerned that he is struggling with his breathing. Forgive me if I am stating the obvious but has gp checked his chest, maybe there is a simpler solution. I know it is very easy to consider the worst when at this stage of the journey and await oncologists plan.Am hoping gp may be able to prescibe something to alleviate symptoms.
I will be thinking of you Monday and hoping Oncologist comes up with an effective longer term plan.
Sending you a big hug.
Lesley xx

User
Posted 02 Dec 2015 at 21:21
Hi Allison,

Really sorry to hear John has had an uncomfortable time.

I hope that Monday's appointment will provide a few answers for you both.

Thinking of you.

Steve x
User
Posted 02 Dec 2015 at 22:21
Thanks for the support my friends, it really helps. Julie I laughed my head off at your last post on your thread, thank goodness for humour eh?

The breathing issue has been reviewed by the GP and it's been put down to the anaemia. I think it probably is the reason. Mind you I think we have another chest infection brewing by the sound of the coughing, sigh. He had the Zoladex jab today and it hurt like hell and had blood taken in preparation for Monday. So a typical day in the life of a long term met patient.

I must admit to feeling pretty down myself, I think the years of being on edge have taken their toll on me and although on the surface I am the same, I know I am not. I am a very lucky person, I know that, I've been married to my love for 39 years, have two wonderful daughters and now a beautiful granddaughter. And we have survived five years of metastatic disease and we didn't expect that. I'm not sure why I don't feel like jumping for joy these days but I am so weary of it all. That's the reason I don't post much anymore. There's really no alternative but to just get on with it. We do enjoy our lives so it's not all bad but I do wish this disease would do one! I have no doubt we all feel the same.

Lots of love
Allison xxx
User
Posted 02 Dec 2015 at 22:29

Hi Alison
I know how utterly washed out we both are after nearly 15 months of this , so I have nothing but utter admiration for you both getting through 5 years. We can only hope and wish the very best to you , especially over xmas
Chris and Elaine x


If life gives you lemons , then make lemonade
User
Posted 03 Dec 2015 at 00:23

Maybe it is the sense of time ticking on Allison - being blessed to have had 5 years that you maybe didn't expect to begin with does not trump the sadness of wondering when the luck will run out or the exhaustion of constantly being on your guard. You have said this to others plenty of times so I will remind you ..... sometimes the one looking after forgets to look after themselves.

Keep on being strong, my friend, although I have to be a little selfish and admit I miss your posts on here.

Love you loads xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Dec 2015 at 21:03
Thanks Lyn
That's exactly it. Well now for some better news. I saw our company doctor yesterday as I haven't been able to face work for the last month. Some of the reasons are;
A boss who has told me on several occasions not to be emotional
A senior leader who stopped me travelling to Poland for the company (I'd fixed up care for John) as he thought it was "rewarding" me
Same man who said to a colleague (who told me) this home situation has been going on too long.

As you can imagine, I was mortified to hear this stuff, particularly as I often feel as though I have to apologise for John surviving this long.

Anyway, long story short, doc said he doubted I could ever return to work as I'm suffering from severe stress so I am once again on six months sick leave paid and then will be on half pay for six months and then most probably I will fall into the company sickness insurance scheme which gives 75% pay until I'm better or retirement. I feel utterly relieved, my job is complex and tricky and I felt I couldn't go on. Now I don't have to and I feel much better as a result. I hadn't realised how much tension it was all causing me. Thank heavens for a kind doctor who saw quickly that I genuinely couldn't carry on.

Now I can concentrate on my beloved hubby.

Lots of love
Allison xxxx
User
Posted 04 Dec 2015 at 21:40

Why not


Best wishs Allison


 


Barry

User
Posted 04 Dec 2015 at 21:41

Allison, though you won't know me, my first thoughts on reading your latest post was...RESULT....and a real sense of karma, so go and do the things that you want to do rather than the things you have to do....

D

User
Posted 05 Dec 2015 at 01:13

To hold down a job and look after your OH in the way you'd like is an impossible task. Your doctor has done absolutely the right thing for the 2 of you. Taking better care of yourself will enable you to care for John with more energy, and most importantly proper rest.

It seems unbelievable the comments that have come from work. In this day and age, target driven management has a lot to answer for. It seems some people just don't have an understanding bone in their bodies. It was Richard Branson, I think, who said the company that best looks after its employees is the one that will achieve the best customer satisfaction. It is a maxim that needs to be followed more often.

Best wishes to you both.

Paul

Stay Calm And Carry On.
 
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