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The million dollar question

User
Posted 23 Jul 2025 at 08:13

Hi guys

Thanks so much,you could be right ade 1000 quid here we come,train tickets and digs for Glasgow are booked,fingers crossed I'm good to go 👍,2 months is a long way away to plan things nowadays other than hospital appointments 😀 

Phil 

User
Posted 23 Jul 2025 at 08:47
Also done, well done for being so supportive to prostate cancer and good luck!!

Christine

User
Posted 23 Jul 2025 at 09:55

Incredible donation 👏 🙌 ❤️ thanks so much just gone through the £1000 marker.

Phil 

User
Posted 23 Jul 2025 at 13:57
Well done for topping a £1000, no pressure then
User
Posted 24 Jul 2025 at 09:33

Hi guys 

Little update....PSA results have come through from my last consultation/infusion a couple of weeks ago,its gone down 1 !!! 169 to 168,I suppose its gone down lol it could have been worse at least it backs up what the consultants have said "no progression"

I feel like micheal Caine in the closing scene of Italian job when the coach is balancing on a cliff edge.

Take care all phil

User
Posted 24 Jul 2025 at 10:34
Let's hope this is now the turning point, keep on believing
User
Posted 24 Jul 2025 at 11:14

I would be pleased to take a static PSA Phil. I think that shows the treatment is doing something. Let’s hope it continues to work. Fingers crossed. 

I got my latest PSA today and it’s up to 80 something from 50 something but my consultant not worried as bloods show the Radium is working…..! 

 

Cheers

Phil

 

User
Posted 27 Jul 2025 at 21:10

Originally Posted by: Online Community Member

Hi guys 

Little update....PSA results have come through from my last consultation/infusion a couple of weeks ago,its gone down 1 !!! 169 to 168,I suppose its gone down lol it could have been worse at least it backs up what the consultants have said "no progression"

I feel like micheal Caine in the closing scene of Italian job when the coach is balancing on a cliff edge.

Take care all phil

 

We are the real self preservation society!

User
Posted 28 Jul 2025 at 17:18
Hi Phil

I'm so pleased your PSA is stable!

And wow your fundraiser is going well, good lad, keep on keeping on.

Love Melissa x

Mrs MAS

User
Posted 29 Jul 2025 at 08:39

Hi Mrs Mas

Thank-you for your kind words and support 

Phil ❤️ 👍 

User
Posted 31 Jul 2025 at 08:37

Morning all

Little update.....was supposed to have my 8th infusion today at the royal Marsden in Sutton but had a phone call Tuesday when i was all packed to say because I was on antibiotics for a UTi they've had to cancel it !!!! and yet I asked them before I started the the weeks course of antibiotics if it was ok and they said yes it would be fine and there was no mention of cancelling todays infusion!!!

The knock on effect of this has been huge,infusion is now next week which clasheshes with mri and x-rays,the following infusion clashes with my kidney stent exchange and may even jeopardise my fund raiser in Glasgow,I've had to cancel hotels and the atmosphere at home has been toxic

Sorry to have a rant guys and I no some of you maybe be in worse positions but it shows that this journey can not only be physically challenging but mentally.

But I will adapt and overcome...you have too

Stay strong 💪 all 

Phil

User
Posted 31 Jul 2025 at 09:11
Sad to hear centers of "excellence" like the Royal Marsden make cock ups too... Hope it all gets back in sync soon.
User
Posted 31 Jul 2025 at 09:16

Hi Phil.

It's absolutely disgraceful, that often in the NHS, the left hand doesn't know what the right hand is doing. I know they are under pressure but to be told one thing one day, and then for them to change their mind is inexcusable.

I hope that you didn't lose out financially having to cancel your hotel. As for the fund raiser, it matters not whether you pedal or you dont, it's the thought that counts. I hope the atmosphere lightens at home, mate.

As for apologising for ranting. If anyone deserves to, it's you Phil. 👍

Edited by member 31 Jul 2025 at 09:29  | Reason: Typo

User
Posted 31 Jul 2025 at 11:02

Oh what a pain Phil. They don’t seem to understand the stress sometimes do they.  Having to rebook hotels etc….

I hope you get it all sorted and as previously said dont worry about the Glasgow thingy. You can do it virtually in your head 😁.

Cheer, hope you get the UTI sorted as well. That’s not nice to have.

Phil

User
Posted 31 Jul 2025 at 12:18

That's a bummer, just sort the UTI and get yourself fit and well again, then things will fall back in place. Yes Glasgow is a kick in the teeth, but look after yourselves, don't worry about anything else, do something together to make you happy. You are welcome to a rant anytime, we all need to vent and on here is the best place 'cause we'll understand

User
Posted 01 Aug 2025 at 08:05

Thanks all for your messages,I will get to that fundraiser 🙏 

As always will keep you updated 

Phil 

User
Posted 01 Aug 2025 at 09:05

So often it's communication or the lack of that causes the problems. I don't think the NHS do appreciate how much their changing one appointment can mess with their patients life and wellbeing. Or that simply getting to a hospital appointment can be such a huge task in itself.

Separate tale but it links into the hospital inefficiency vibe. I had a little accident yesterday and tore the tip of my little finger off, requiring a run to A&E. Everything went swimmingly until the nurse needed to take photos of the injury prior to stitching it back on. He used his iPhone but had to upload the images to the hospital system. Problem, no Internet wi fi in the department.  He had to walk off to xray to get a signal, then come back, take another photo, go back to xray, and so on until he had what he needed. He said their IT boys had been several times, looked around, said your wi fi down here is crap and then just left. As someone said, left hand not appreciating what the right hand needs. 

Amusingly I said I'd only ever had staples put in before, not actual stitches. The nurse said that staples were all the rage at one point but he never got to have a go as they lost the gun! So he sticks to sewing.

He finally put tube gauze bandage on the injury. I said I'd not seen that in years, most households had a roll of it and the bendy applicator tool when I was young. He said they used it a lot but every applicator tool disappeared and they were left trying to put it on by hand or with two teaspoons! Turns out a manager had spotted how much the stainless steel applicators cost and had ordered them all collected for safe keeping. They were locked in her drawer for months till someone found them!

Got to love a big organisation built on silo mentality. 

 

 
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