My 3 men contd

Two PSA results in one day:-

Dad - now up to 0.7 - we have discussed and he is not going to do anything except test again in 12 months time

John - <0.1 again ... to be honest, we can't believe our luck! Just goes to show that even if it does rise over the dreaded 0.1 it doesn't necessarily mean biochemical recurrence.

Update - May 2014 Dad's PSA has come back at 0.21 so a little lower than the last one which gives him confidence that he was right not to go rushing down the HT route. One year down, just another 19 years to go!

A little later than it should have been - I think John was a bit more worried this time than usual so kept prevaricating on booking the appointment - but PSA test done and results received. Worries were unfounded, score is 0.06 so it is true what we keep saying about tiny rises in ultrasensitive testing.

Last few results then: 0.07, 0.08, 0.09, 0.07, 0.06

The GP had also ordered a thyroid test this time (no explanation for that) which was also fine.

John's PSA is due tomorrow. Dad's is rising gently. Yesterday it was 4 years since Stan's funeral. It was also 10 years since my mother-in-law died and should have been my brother's birthday last week. I have spent the last 36 hours in ICU with my dad's partner and made the decision at 4pm that the doctors should turn off the life support machines - she died at 4.55pm. I haven't slept for days. John & I have 7 parent-like people in our lives, 6 of whom have had cancer, three of whom I have nursed at home until the end but this is the first time I have had to make a decision rather than nature (and morphine) determining the course.

Tonight, I really really wish I wasn't tee total as the idea of getting lashed is strangely appealing.

Today is my birthday.

Lyn,

Am I like your dad? Well of course not, except perhaps for one similarity which is attitude to PCa the more you survive. A topic rarely touched on here and maybe not elsewhere? Its not that you’ve given up on thankfully a long fight nor do you feel invincible but the more I survive the more I’m aware of others my age and younger in all health areas that do not. From that the quality of life, which always scored high on my list of wants, becomes increasingly important.

If it’s any comfort and not wishing to upset anyone: would I let my kids/relatives influence my health decision, No, perhaps it’s an age thing :)

Good luck to all

Ray

Hi Lynn, Happy new year to you and John, and all the men and their loved ones on this forum, Best wishes Diesel x.

Lyn, that really is great news for you and John.

Interesting story about bloods, i have had mine done at the hospital every four weeks for over four years, and except when i was on Chemo when the bloods are all over the place i can just tell they are mine all pretty similar to the month before.

After starting Abbi they started testing for cholesterol and just continued but over the last six months it has been creeping up so was advised to see my GP, now this was 3 days after having my bloods at the Hospital.

My GP did all of my bloods and these are tested at a different hospital, when they came back they was nothing like the blood results that i normally get.

Just a couple that stood out, Cholesterol every month at the hospital around 7.0 to 7.5 at the GP 5.1, ALP is always around the 40 mark at the GP 29.

I guess the only difference is at the hospital they are tested straight away and i get the results in just over an hour and at the GP surgery the nurse takes the blood then they are tucked in her knicker elastic for 8 hours then slung in the back of a van and driven 30 miles and then the next day someone gets round to testing them.

So i have disregarded all of the bloods but i am sure the GP cholesterol is correct http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Si xx    

Not worried about the missing sign - it has previously gone up to 0.11 then back down to <0.1 and scans are clear so the clinical view is that he simply produces a lot of non-prostate related PSA.

I was at the finish line on the Mall to cheer him and other friends on, and was struck by how many PCUK riders there were; someone said there were over 600! In comparison, our brain tumour charity had 15 riders. An email from PCUK yesterday stated that the riders on Sunday have already raised in excess of £210,000 with more still to be paid in - isn't that amazing!

In other news, Dad's PSA has dropped to 0.95 which is completely in line with his progression rate over the last 3 years so it seems the January 19 result was a glitch. Happy days :-)

Bazza, as a smoker I am coming to terms with the idea that my dad might yet outlive me. You probably will too!

Good news Lyn, especially if Mr P seems happy! My path-lab only go down to 1 decimal place. So Dad has plans for multi holidays next year, well done him for looking forward.

Now you can all enjoy the festive season.

Best wishes, Chris.

Hope John is ok Lyn. Hoping whatever the family crisis are that they are sorted

Bri x

Julie, I don't know where I am going wrong. I am the least empathetic person in the world and yet I must have one of those faces that makes people want to spill their hearts :-( Mr B was very stressed last night so we gave him some good advice. I met a man on a train who told me all about his problems with his aging mum and his job. Two women left my training course today in tears (in the first 5 minutes .. I hadn't even got to the ground rules) and a third took up my whole lunch break with a worry about her children.

I might resign and become a till operator at Asda. People don't tell them stuff, do they?

OH My I couldn't stop laughing , I know have this image in my head of Lyn as an Asda checkout lady dressed in a Nun's habit and very sternly telling people that they can't buy the BURGERS. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

Good news Lyn!

I feel as if I know you Lynne, you and others have and still are so much help to me ( and others )

I know I dont post as I feel I should, but don't feel my knowledge ( or lack of it ) will help just yet.

I'm so pleased for you, really good news.

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

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

BFN

Julie X

Hi Georgina,

Though not a Facebook page there is an excellent site founded by an Australian, the late Terry Herbert. It is called YANA (You Are Not Alone Now). I strongly recommend it and although it has become international, think it likely that it could be instrumental and putting you in touch with a local support group. http://www.yananow.org

Edited by member 23 Jan 2016 at 16:01  | Reason: Not specified

you are now page not found as well as DM

most frustrating when the problem has been reported so many times already.

I think you and DM need to post away to each other unti your respective pages flip over.

xxx

Mo

Xx :-(( xX

and so say all of us!

x

Well, well, well ... have I got news for you.

I went to John's onco appointment with all guns blazing tonight. John had a ridiculous discussion with the nurse last week about his PSA test - she claimed never to have heard of the ultrasensitive test and insisted she had never done one, even faced with the evidence of 7 years of results to 2 or 3 decimal places. When he went yesterday to get the result, he was told it was "fine" at 0.1 and no, there was definitely no sideways hat - but when he looked at the screen he could see the < sign. No, she didn't know that was a 'less than' sign. I mean, these are graduate nurses ffs.

Anyway, I was livid today but Mr B took the wind out of my sails sharpish. Our hospital, a large leading oncology centre, has concluded that the ultrasensitive test is unreliable and made a decision to do away with it completely. Completely. Mr B said he had been extremely concerned at John's last two apparent rises but they are now convinced that it is a technical variance issue of the machines. I think that is pretty much what Mr P (the uro) was telling us when he said a couple of years ago that the same sample could vary from 0.02 - 0.05 if you tested it twice but I never imagined that the hospital would just call a halt to them entirely.

Accepting the view of experts (why wouldn't I, it is a highly respected centre of excellence) John has had 5 years of <0.1 and should in Mr B's words "consider himself in remission"

It will be interesting to see if other hospitals follow suit.

Yes but science moves forward Bri and what they thought was trustworthy 4 or 5 years ago may not have been after all. Maybe you and John would never have had salvage RT if you had only ever had the normal PSA test - or maybe you would have had it a few months later when your PSA became officially detectable. We will never know.

Eleanor, I think you are drunk.

Julie, in the real world I have a mouth like a sewer. It's the nature of the work.

If it’s possible in this world of PCa it looks like a double win lyn. John seems ultra stable and dad is dad with his mind made up so far. Can’t say I blame him given the scores xx

She aborted the interview after five minutes once she realised I had cancer and had had major abdominal surgery to remove it.

Ah, priapism, if only! I was offered MUSE and Caverject, but basically can’t be bothered. Must get round to ordering that pump - size XXS😉, but Her Loveliness has moved the leaflet with the NHS PIP order code, and we can’t find it, so it will have to wait until after Christmas.

Cheers, John.

Good news Lyn so pleased for you both,I have my six monthly blood test tomorrow for next oncology meeting in January.

Have a great Christmas and New year and thanks for all your support in my early days.

John.

I neglected to update the dad saga - we pretty much said our goodbyes, the grandchildren & great-grandchildren travelled from the 4 corners and then he woke up and said 'oh, I feel so much better' and that was it. Back home, doing his garden, striding around the Yorkshire countryside and feeling rather like he has already done his self-isolation and could take on the world :-/ We have re-named him Lazarus.