I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

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 πŸ‘,2 months is a long way away to plan things nowadays other than hospital appointments πŸ˜€ 

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 πŸ‘ πŸ™Œ ❀️ thanks so much just gone through the £1000 marker.

Phil 

User
Posted 23 Jul 2025 at 13:57
Well done for topping a Β£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 ❀️ πŸ‘ 

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 πŸ’ͺ 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. πŸ‘

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 πŸ™ 

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. 

 

User
Posted 16 Aug 2025 at 08:13

Hi Guys

Little update.....Had a rough week since my 8th infusion,perhaps its all starting to catch up with me,I suppose its doesn't help having contrast dye for MRI,nuclear medicine for X-Ray,anti histamine & Cabizitaxel all pumped into my viens in a 2 day period.

Think I've got yet another UTI so on antibiotics got my kidney stent exchange arranged for the 28th Aug and next infusion on 2nd Sept then hopefully Chris Hoys fund raiser on the 7th 🀞 so its all go.

On the plus side I had a telephone conversation with my consultant yesterday and my scan/X-Ray results from last week showed there was no further spread and my condition is stable.

Hope you are all keeping as well as you can and will update when I know more πŸ‘ 

Regards Phil 

User
Posted 16 Aug 2025 at 09:22

Phil you're a marvel, massive respect 

User
Posted 16 Aug 2025 at 09:40

Hi Phil,

Thanks for the update, mate.

It's no wonder that you're feeling rough, but it's fabulous news that there's no further spread.

Good luck with your next infusion, and with the fund raiser. But, please don't push yourself too far, mate. Take care. πŸ‘

User
Posted 16 Aug 2025 at 10:28

Phil, 

Youre doing amazing, sorry you're feeling the effects of the treatment more but staying  stable is music to my ears and I'm so pleased for you. I know my husband Allan will be too, wherever he is, and I'm rooting for you always.

Keep on keeping on

Love Melissa x

Mrs MAS

User
Posted 18 Aug 2025 at 09:58

Great news Phil that the cancer is stable at the moment. It’s all we can hope for in our situation. 

Really hope that you feel a bit better soon  and the UTI is sorted out. I am presuming it is 10 cycles ? So 2 more to go…!

Keep strong , thinking of you πŸ‘

Phil

User
Posted 19 Aug 2025 at 08:14

Yes

10 cycles phil,then its a case of monitor me wait for progression officially end the trial and discuss what my next option is.

User
Posted 28 Aug 2025 at 15:42

Hi All

Had kidney Stent exchange this morning under general at my local hospital all went well as it could,not peeing to bad and booked back in for 9 months time as discussed with urologist.

Lower back pain has eased and coping for now,9th infusion booked in for Tuesday coming in london,going by train for the first time to see how it goes,hope me and my wife's anxiety can handle it lol.

Will update next week 

Stay strong πŸ’ͺ all......Phil.

User
Posted 31 Aug 2025 at 15:58
Phil you're my hero I hope I can cope with all the hassle you're coping with, went to my sister's in Bolton for a visit, thanks goodness the daughter drove cause without the driving I needed two days of rest after
User
Posted 03 Sep 2025 at 12:43

Hi all....update time

Travelled to my appointment for my 9th infusion in sutton Monday by train for the first time and was surprised how smooth it went.

Then we were both hit by the bonbshellπŸ’£ the sponsors have said that the cancer has progressed and the treatment/trial is being stopped.

Then Monday night in the hotel lower back pain was off the scales,so back to sutton the following morning for emergency mri and prescribed codeine and liquid morphine,slight progression was confirmed by consultant,radio-therapy has been organised at local hospital (meeting tomorrow) and pet-scan arranged for 22nd sept to see if I'm eligible for another trial 🀞.

Missed train home but told  ticket man at avanti our circumstances who god bless him wavered the £125 for new tickets,was popping morphine on train back home.

Life's a b**** 

Will update as always.....stay strong πŸ’ͺ all.

User
Posted 03 Sep 2025 at 12:52

Hi Phil 

I'm very sorry to hear about your disease progression and that the trial has stopped. I also free so sorry that you are in pain, mate. I wish there was something I could do.

Your strength and resilience is inspirational to us all. I know that you'll keep on fighting.

 

User
Posted 03 Sep 2025 at 13:02

Hi Phil. 

So sorry to hear they’ve stopped your trial. I can’t imagine how you both feel right now. 

Hopefully you can get some radiotherapy to help with the pain. And possibly there’s another trial coming along. 

Thoughts are with you πŸ‘. 

Phil

User
Posted 03 Sep 2025 at 13:29
Devastated to hear this Phil. No one is braver than you right now. You’re in my thoughts
User
Posted 03 Sep 2025 at 15:03
Flipping hell Phil (that's a variation of what I want to say)

So the 9th one didn't happen?

I am so sorry they have stopped the trial for you. I was going to say I know how you feel - I don't, but I have a fair idea how your wife feels and I am gutted for you both!

The good bit is the progression is slight and hopefully the planned radiotherapy will hopefully bat it down a bit for you and its in your local hospital.

Hope there is another suitable trial you can go on.

Also the Avanti man - how nice - you know the most simple acts of kindness, often from strangers, reminds me there's still lots of good in the world.

Sending all my love to you both.

Melissa x

Mrs MAS

User
Posted 03 Sep 2025 at 16:01

Hi Mrs Mas

Yes,I shed a tear with the man from avanti (he say yes lol) wavered the charge,if I could have jumped over the counter I would have hugged him.

Think the one trial will depend on the results of the pet-scan,strangely the more i light up the better.

Yes its hitting the wife hard......and Phil it looks like we're both ready for the knackers yard...  πŸ’ͺ but not yet ah pal.

User
Posted 04 Sep 2025 at 12:41
So glad the man from Avanti showed you this much deserved kindness. Stay brave! Wishing you all the best Phil.
User
Posted 04 Sep 2025 at 23:07
Hope you qualify for a new trial soon. Fingers crossed the RT sorts your pain.
User
Posted 06 Sep 2025 at 11:33
So sorry to hear the trial has been stopped, devastated for you both. Hopefully they still have some witches brew left to help you soon, you must have been really bad to soften the Avanti mans heart, Take care Gentle hugs to you both
User
Posted 08 Sep 2025 at 14:18

Hi everyone 

Just on train back from Glasgow,managed to do my 20min static cycle in the velodrome with my son,was a good day got to see loads of famous faces,chris hoy,steve Redgrave,Nicola sturgeon,andy murry,Mark Cavendish,Louise michim to name a few.listened to the chemical brothers on stage,I raised 1700 pound in the end thanks to everyone πŸ‘ total raised on the day was just over 2 mill and climbing.which went to four cancer charities prostate being one of thrm.

On a personal note had my radiotherapy to lower back and its really helped,just gotta get over the pikes and constipation all the pain killers have given me.

Thanks again all pet scan in 2 weeks 

Regards Phil 

User
Posted 08 Sep 2025 at 14:48

Wonderful Phil, well done. I bet the atmosphere was electric.

Hope yr painkillers are superb and the radiotherapy does it's thing!

Best Wishes as always x

Mrs MAS

User
Posted 08 Sep 2025 at 14:49

Phil. You did amazing and so pleased you had a great day too. To be part of that is so special. 

Good that the radiotherapy has worked on the lower back too. Hopefully the painkillers will wash out of your system soon. 

Well done, 

Phil

User
Posted 08 Sep 2025 at 14:58
Phil, well done, must have taken an awful lot of determination to ride the bike for twenty minutes, give you and your family for making the weekend happen.

total respect

User
Posted 08 Sep 2025 at 15:06
Respect Phil. An inspiration you are πŸ™
 
Forum Jump  
©2025 Prostate Cancer UK