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My 3 men contd

User
Posted 20 Aug 2015 at 21:58

Hi Lyn,

Your John's PSA still technically undetectable despite these tiny fluctuations. I would be very happy with that!

Best wishes,


Jacey

User
Posted 21 Aug 2015 at 08:15

Good news Lyn, your sensible and calm approach is always impressive and a lesson to us all.
I'll be turning the telly on and watching for the Ecig (my iPad wanted to make that "evil" lol) brandishing runner, good on you for giving up the smokes, I truly believe that Ecigs are a thousand times better.

Love you lots
Devonmaid xxx

User
Posted 21 Aug 2015 at 12:11

Thanks for all your help Lyn since I've been on the site. Despite all your struggles , you and John seem to be the " target couple " to a lot of people on here unfortunate enough to have PCa. You've weathered it all and are beating it. Good for you and long may it continue
Chris x

If life gives you lemons , then make lemonade

User
Posted 06 Sep 2015 at 15:12
Just read your story Lyn. gee whizz, with both your dad and your other half having struggles with PC, I don't know how you keep so calm and practical.. Think I need some of that to rub off on me!! How do you keep your sense of perspective with everything going on?

Joan

User
Posted 08 Nov 2015 at 01:42

The last few days have been very emotional - after a 3 day labour, our first grandchild arrived this morning by emergency section. We weren't able to get very much information yesterday or this morning but have now seen some photos and both mummy and baby look beautiful. Imagine how we felt this afternoon to hear that his name is Theodore Stanley - my lovely Stan would have been so very proud of his great grandson.

We are travelling down to Essex tomorrow to meet Theo and give my brave girl a big hug - if the hospital let us.

God Bless, everyone x

PS Edited to say that as much as we miss Stan and feel sad that he won't meet his namesake, I am thrilled for my dad who is going to be completely over the moon .... when I eventually get hold of him somewhere in Tenerife for a month :-)

Edited by member 08 Nov 2015 at 02:00  | Reason: Not specified

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

User
Posted 08 Nov 2015 at 01:44
Originally Posted by: Online Community Member
Just read your story Lyn. gee whizz, with both your dad and your other half having struggles with PC, I don't know how you keep so calm and practical.. Think I need some of that to rub off on me!! How do you keep your sense of perspective with everything going on?

Joan

Sorry Fabbi, I have no idea how I missed this. Who is spreading the rumour that I have any sense of perspective??? I deny it :-)

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

User
Posted 08 Nov 2015 at 02:35
Hi Lyn,

That's really wonderful news. Congratulations. You must be really excited to see him. Bet you can't wait.

I'm getting nervous waiting for our second grandchild, due anytime now. I really pray everything goes ok.

I remember this time last year being in the centre of a golf course (taking pictures) feeling really concerned about my eldest daughter who had started her labour.

An exciting time, it makes it easier to forget the horrible things.

Enjoy.

Steve xx

User
Posted 08 Nov 2015 at 07:05

Congratulations to you all on the good news. Glad that Mum and baby are well. 3 days!

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Nov 2015 at 08:35

Really happy that there is good news for you Lyn and the rest of the family.
Best wishes
Chris and Elaine x

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2015 at 08:41

Well the best things in life are worth waiting for - but Three days !! Wow

Congratulations Lyn and John on your first grandchild.

Essex is a lovely county despite the jokes.

We can't control the winds - but we can adjust our sails
User
Posted 08 Nov 2015 at 08:43

Lyn very good news on baby and name. Enjoy, as I've no doubts you will.

Ray

User
Posted 08 Nov 2015 at 09:08

Lovely news...glad to hear mother and baby are well

Can't beat being a grandparent

Bri x

User
Posted 08 Nov 2015 at 14:45
Lyn

I am so thrilled for you all, many congratulations. 3 days in labour is making me wince though. Your poor daughter must have really had a hard time bringing that beautiful new life into this world. However, I am certain that will all be placed into a far away part of her mind as she bonds with baby Theo.

I think it is a testament to how much Stan meant to you all that she has named her first born son after him.

I bet the journey to Essex will seem like it takes an eternity, I can visualise you and John sprinting up the hospital corridors toting bundles of gifts for Mother and child.

I would not want to be the Ward sister that tried to stop you from at least a masked and gowned peekaboo !

Hugs galore

Xxxx

Mo

User
Posted 08 Nov 2015 at 15:20
XXXXXXXXX

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 08 Nov 2015 at 15:40

Great news Lyn. Lovely to have grandchildren, I have 7 and only downside is the more there are the more expensive is Christmas and other present times, LOL

Barry
User
Posted 08 Nov 2015 at 16:10
Hi Grandma Lyn and Grandpa John, great news, hope all are doing well. Diesel.x
User
Posted 08 Nov 2015 at 20:12

Congrats and best wishes!

Jacey.

User
Posted 08 Nov 2015 at 20:32

congrats on the new arrival
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 08 Nov 2015 at 21:32

Top news! X

User
Posted 08 Nov 2015 at 22:07
L and J

Congratulations to you and your family.

Thanks Chris and Dawn

User
Posted 08 Nov 2015 at 22:16

Congratulations from me as well.

User
Posted 08 Nov 2015 at 22:31

FANTASTIC NEWS GRANDMA AND GRANDPA.  It's amazing how one small bundle can bring so many smiles and so much love.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2015 at 23:41

My congratulations too Lynne.
It's wonderful to hear of new lives arriving.
We are also eagerly awaiting our new granddaughter on 6 December (our 5th grandchild)
It makes the days so much more worthwhile

Paul

User
Posted 09 Nov 2015 at 15:10

Congratulations to you both grandma and grandad
Grandkids are so good I wish we had had them first :-)

User
Posted 09 Nov 2015 at 19:34
Congratulations to you and john what lovely news

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Nov 2015 at 22:32

It seems there has been some sort of policy change at our GP practice. John rang for his latest PSA result on Friday and the receptionist refused to provide it - said that it needed to be reviewed by the GP first. He must have been a bit worried about this but didn't mention it until last night. He phoned again today and was told the same thing - he explained that he has this test every three months and needs the number so that he can inform his onco and urologist but the receptionist said that it had been referred to the hospital for advice. You can imagine the scene - a now anxious husband got cross - they could only offer that a GP would phone him back.

GP phoned back this evening - "result is fine"
John - "what is the actual number?"
GP - "It's fine - nice and low"
John "what is the number?"
GP says 0.09

Now, the GP may not have known that John has no prostate. She may have no idea that he has had prostate cancer. He says that she and the receptionist both spoke to him like he was a child; my instinct is that they may have assumed - because it was prostate-related - that he was some doddery old man. I have suggested that he e-mails the practice tomorrow to point out (politely) that he has a brain and to ask whether thye have changed their policy on giving results over the phone.

I am away but John sounded stressed on the phone - maybe too many hours thinking about it and getting cross which is unusual as he is normally the most calm, placid guy you could ever meet. I said that 0.09 is still undetectable and nothing to worry about so hopefully he is now reassured until we see the onco. Privately, I am a little disappointed for him - was really hoping that the last rise to 0.08 was simply to do with cycling in France. In fact, as I type this I am thinking that he may have had a big bike ride the day before the most recent test - I must phone him back and ask.

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

User
Posted 16 Nov 2015 at 23:08
Hi Lynn, GP's surgeries for me have often been the instigators of my greatest frustrations, and they usually begin with any telephone enquiry,after having selected and pressed a number from 1to 6.

Think I'll stop there, getting annoyed now.Hope all is OK for your John,no doubt hearing your dulcit tones will do the trick. Diesel x

User
Posted 16 Nov 2015 at 23:43

Shoot as in not what you wanted to hear, or shoot what is happening with John's psa or Shoot the receptionist either way I wouldn't want to be in your way when you get off that train. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Nov 2015 at 23:59

Hi Lynn,

I have had a similar reaction at both my present and previous surgeries when I asked for my PSA result. Sometimes the receptionist would just say it is OK, within range, (as she looked at the figure range for a man with an untreated prostate, sometimes adding that a doctor has said it is OK). I now just ask for a print out. It provides me with a written record. They do this immediately whilst I wait. Thankfully the surgery is not far from me.

Hope John's PSA stays below 0.1

Edited by member 17 Nov 2015 at 00:56  | Reason: Not specified

Barry
User
Posted 17 Nov 2015 at 00:01

Originally Posted by: Online Community Member
Hi Lynn, GP's surgeries for me have often been the instigators of my greatest frustrations, and they usually begin with any telephone enquiry,after having selected and pressed a number from 1to 6.
Think I'll stop there, getting annoyed now.Hope all is OK for your John,no doubt hearing your dulcit tones will do the trick. Diesel x

 

Doh - I don't press any numbers when I get those kind of messages ... if you don't select anything, a real person has to come on the phone to talk to you which I find much more efficient

 

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

User
Posted 17 Nov 2015 at 00:04

Manwith / Julie

pah! Neither receptionist or PSA would dare get on my wrong side - one withering look would shrivel any living thing

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

User
Posted 17 Nov 2015 at 07:50

Hi Lyn
Sorry the PSA wasn't perfect. As for the practice this has happened for me too !! If I have the test done at the surgery itself , then I can get the result no problem over the phone or printed. If I use the surgeons printed cards then the result stays in the hospitals system and my doctor has to access said system and print it off !! It then goes in an envelope and I have to pick it up. WTF It's like an espionage thriller.
As for your one withering look shrivelling any living thing , I can see the pressure John must have been under those 1st years 😀😀😀😀
Chris

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2015 at 09:02
Hi young Lyn,you can shrivel me any time you like. Diesel x

Edited by member 17 Nov 2015 at 09:04  | Reason: Not specified

User
Posted 17 Nov 2015 at 09:26
Hi lyn

I don't think the receptionists understand trully how stressful it is for our lovely men and knock on effect, us wives!! Sorry to hear of the unnecessary added stress for you both.

Maybe this is calling for a polite letter to the practice manager to put an effective protocol together to relay blood results to patents better. And ensure all reception staff know about it.

Hope you've had a nice break away

Lesley x

User
Posted 17 Nov 2015 at 09:30

Hi Lyn,as a new member im not fully up to date on your familys journey through this disease&i dont claim to know you at all,but what comes across to me in all the conversations is your empthethy&posetivity.There are so many people on this site all at different stages of either progression or regression,but all&you in particular seem so posetive.Thankyou for the advice you have given me&really just reading posts helps as you might find something others ar going through that mirrors your own condition.Im 4 weeks post surgery, urine retention better,now waiting for the"blood test"on Nov 26th&review on Dec 3rd.Thankyou also for your explanation to me about the difference's of libido versus erectile dysfunction&finally congratulations on the arrival of your grandchild.

Best wishes

Polarbear 2.

User
Posted 17 Nov 2015 at 15:52
Lyn

I can't imagine John rattled, so it must have really got to him. I am sure all the Men have anxiety enough around test time without red tape and seemingly unnecessary beurocracy.

I had to go to my GP surgery today and whilst I was waiting they had quite a lot of information on the screen about the cutbacks in funding to the GP surgery. Our blood test result line can now only read to you word verbatim what the GP has commented on. If he/she has said "All within margins all OK" that is all you get. If there is anything of concern then the GP will ring. They are not allowed to give actual figures.

Now I get a bit mad at that, but I suspect this is all down to the litigious society we now live in. If some clerical or even medical staff read you the wrong information, transpose figures or get anything wrong the practice Managers are terrified of complaints or comeback on them.

Our surgery charge 75p per sheet for a pintout of the results so now, when I see the consultant after my 3 monthly blood tests for RA, He just shows me them on the screen which I find sufficient for my purposes.

I wonder if John could arrange for a note to be put on his file that gives permission for him to be given the specific result each time?

Not sure how much impact cycling actually has when the prostate has been removed or irradiated but I do hope John's figures stay low enough to avoid any further treatment for as long as possible.

Lord help the receptionist that stands in the way of Lyn in dragon mode , if the withering look doesn't do the trick then the fire of tongues certainly will. Rather her than me !!!

xxx

Mo

User
Posted 17 Nov 2015 at 16:24

I suppose as long as you can check it has actually been viewed. My doctors have definitely made slip-ups and not read letters etc. And I'm getting really annoyed with no-one checking drug interactions. Seriously, you need to do it yourself. Who is supposed to do it ? Psychiatrist , doctor , Onco , ED nurse or pharmacist ?? I wonder how many PCa guys have been on Bicalutamide and Cialis at the same time ?? Very dangerous.
Chris

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2015 at 17:38

Very frustrating sometimes. I posted previously about one of the nurses at our surgery saying I didn't need a PSA test as I didn't have a Prostate.

Interesting about the cycling still being able to effect the PSA post-op....will bare that in mind when I next go for my test

Hope it drops soon

Bri x

User
Posted 17 Nov 2015 at 22:34

I don't think there is any science that would support the idea that cycling could affect PSA once the prostate is removed - but if it keeps John on an even keel, I will say anything

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

User
Posted 21 Nov 2015 at 12:31

Onco called - we are seeing him on Tuesday.

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

User
Posted 21 Nov 2015 at 14:32
Sincerely hoping all is well. Diesel. x
User
Posted 21 Nov 2015 at 17:14
L

All the best to both of you for Tuesday.

Thanks Chris

User
Posted 21 Nov 2015 at 19:26

Hope everything goes well Tuesday

Just a thought and don't know if any doctors surgery/hospital do it but couldn't results be e -mailed.Would then have a record of it and could be printed if needed

User
Posted 21 Nov 2015 at 19:58
Hope everything goes well on Tuesday.

All the Best,

Steve

User
Posted 21 Nov 2015 at 20:08

Thinking of you both and hope everything goes ok

Bri x

User
Posted 21 Nov 2015 at 22:05

I'm thinking of you too and hoping everything will be ok.

Paul

User
Posted 21 Nov 2015 at 23:01

Hope everything goes OK my fellow Saggi http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif of course they do say we are very forthright , HONEST as in brutally, straight to the point . With a slight Marry Poppins outlook on life. I once read a parenting book where the child asks the Saggi parent is there really a Father Xmas and she say's "Well it's like this Darling " yes Reindeer are real , Father Xmas was invented by Victorians to sell Xmas cards so No he is not real, but pack your bags we are of to Lapland there is a Guy called Kriss Krinngle that we need to check out.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Nov 2015 at 17:32
Lyn

wil be thinking of you Tuesday, hope all goes well.

Not sure why Julie should refer to you or herself as Saggis ....I guess it is the same reason I am a Gem

which kind of suggests that mine don't hang they just sparkle (for those that have met all three of us just stop sniggering right this minute!!)

XXXXX

MO

PS it could have been worse......

User
Posted 23 Nov 2015 at 23:33

Thanks everyone x

Julie, I have actually upset someone recently by saying Christmas cards were a product of Victorian commercialism but I am not sure whether that is down to being a Saggi - more likely because I am at the extreme end of ENTP (anyone who knows their Myers Briggs will be smirking already)

I shall have to reign in my T tomorrow night and try to be a bit more F than is natural to me

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

User
Posted 25 Nov 2015 at 00:00

Arrived at the onco's office to find we were being joined by the community support worker - didn't even know this existed!

Onco is concerned and was a bit cross that he hadn't been told about the August result; a problem I guess of seeing uro and onco in 3 monthly rotation. We discussed my theory that the rise could be down to John cheating and eating bacon and mince every time my back is turned. Mr B's reaction was very interesting - he said "yes, I suppose the healthy diet could have kept the PSA artificially low" which is the opposite way round to what I would have expected - that eating these hormone laden foods might artifically raise the score!

We have a plan - thank God for plans:-
- John eats less red meat and more garlic, even if I am not there to nag him
- repeat PSA in Feb and if it has risen to 0.12 - 0.15 or above, we assume the cancer is back
- in which case J will have a choline PET scan
- if there is an identifiable hot spot, more RT would be the first option - Mr P feels that if there is still some cancer it is not in the area already irradiated
- in the meantime, our hospital is trialling a new nuclear tracer for PET scans which is more precise than choline and has a much longer half life which makes it more accessible - the shorthand name is FACBC. John will have one of these scans when the trial launches around Christmas / New Year
- if there is a hot spot on the FACBC scan, refer to step 4 above

So not the best day ever but I have a new theory. In a normal man (with a prostate and no cancer) 10% of PSA is produced in the adrenal glands. Adrenal glands can work overtime when a person is in a state of tension or danger. Some of you know that a dreadful family circumstance has put John in a perpetual state of 'fight or flight' since February - so what if high stress / anxiety can raise PSA levels? I am on a mission now - my initial searches are indicating that research has concluded stress does not affect PSA but I have a small collection of papers that I need to read in detail just in case.

If it turns out that stress can increase PSA production, Julie's score would be high enough to consider having an RP!

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

 
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