A place to have a chat.

User

Posted 04 Sep 2025 at 23:14

Done

User

Posted 05 Sep 2025 at 06:51

Hi Tony.

Thanks for your story. It’s great we are getting a little more footfall in the Pub.

Ive just updated my thread this morning as I’m back in hospital.

Take care chaps

Phil

User

Posted 05 Sep 2025 at 08:58

Originally Posted by: Online Community Member

Ive just updated my thread this morning as I’m back in hospital.

I've just read it, Phil. I hope the transfusion goes well and that you're soon back at home, mate.🤞

Edited by member 05 Sep 2025 at 08:59 | Reason: Typo

User

Posted 05 Sep 2025 at 16:46

Soooo, I didn't have the final Chemo after all... because I've got peripheral neuropathy - nerve damage in my hands and feet caused by the previous chemos. I'd been feeling numbness in my hands and feet for a few weeks but the last oncologist just said it was a side-effect. Talked to my main dude Oncologist this time and he said he would stop the final treatment as often the nerve damage is permanent. So I've got pins and needles and numbness - you know if you've picked up a baking tray thats just come out of the oven by accident ( I have! ) and it's burntt your finger tips, thats just what it feels like.

My feet are worse, spilt hot candle wax over the left foot and didn't notice till someone told me. So I'm a bit wobbly at the moment, losing my balance and dropping things a lot. Loading and unloading the dishwasher has become a much noisier experience.... "crash BUGGER!...whoops... crash...ARSE!" etc.

I said earlier I'm going on a campervan trip with my mum in a couple of weeks, weeeeell its kind of grown and now we're doing a tour of the Outer Hebrides with my sister as well. Its going to be fun, got my sister on the van insurance so she can help me with the driving. Quite a lot of miles being driven. From me in Derby to them in West Kilbride is about 5 1/2 hours. So going to start off early, then the beauty of having a camper van is I can stop for a wee or cup of tea and a lie down whenever I want!

User

Posted 05 Sep 2025 at 18:52

Hi Al,

Nightmare! That is bizarre re- the pins and needles, must be weird. Enjoy the Outer Hebrides, it is absolutely fantastic up there. Those beaches on Harris - Luskentyre, Huishnish, Uig - superb. (Take a nine iron and few golf balls). And you must go to see the standing stones at Calanish.

All the best matey and enjoy,

SpongeBob

User

Posted 06 Sep 2025 at 06:41

To all those who sponsored me - thank you! James and I made it from Trafalgar Square in London to the Arc de Triumph in Paris arriving yesterday afternoon in a tad under 24 hours…. with 11 minutes to spare! It was one hell of a ride with a headwind most of the way down and some fairly nasty downpours. This little cycling venture of ours has now raised just shy of £19,800 so far between the 2 of us from all sources for Prostrate Cancer Uk - not bad for a days work and hopefully a deserving cause.

Thank you for your huge support - it’s really meant a lot to me and has been truly humbling receiving so many messages of support. This cancer affects so many lives. Every little counts hopefully!

Thanks again!

User

Posted 06 Sep 2025 at 07:20

Well done to both of you! 👏

Congratulations, despite the inclement weather, for completing your challenge on time, and raising so much money for such a worthy cause.

I hope you both have a very, very relaxing weekend. 👍

Edited by member 06 Sep 2025 at 07:27 | Reason: Typo

User

Posted 06 Sep 2025 at 11:08

Hi Tony,

Fantastic achievement, well done!

Cheers,

Kev.

User

Posted 06 Sep 2025 at 14:25

Well played T58. Excellent effort for a worthy cause.

Standing order: Alpha Delta Two Eight. (Splice the mainbrace).

User

Posted 10 Sep 2025 at 23:24

I’ve probably posted this in the wrong place! Just feeling so frustrated. Husband 51 diagnosed with stage 4 PC, Sept 24. Bone mets on pelvis but no lymph node involvement. A year on and he’s on 3 monthly injections and Enzalutamide after having been taken off Abiraterone due to ALT levels being too high. Fatigue, hot flushes and zero libido all the order of the day. Oncology appointment beginning of October which just feels pointless. Last appointment we asked if any other treatment plan being considered, not at the moment. Just doesn’t feel enough when I read of others getting radio/chemo etc. Tbh just needed a bit of a vent tonight and although I have friends and family to talk to it’s just too hard sometimes. Knew folk on here would probably understand X

User

Posted 11 Sep 2025 at 00:50

Hi,

You can vent as much as you want in here because we do understand how you feel.

I'm sorry but I don't feel qualified to comment on your husband's treatment and other possible options that could be considered. However, there are men on here, and the wives of men, who are in a similar position, who I'm sure will be able to help and advise.

I've responded to your post just to let you know that, even at this unearthly hour, that someone has listened and cares.

User

Posted 11 Sep 2025 at 06:25

Thanks Adrian. Just needed to get it out. F&F are great but they just don’t get it. Just exhausted, drained and quite frankly p****d off. Husband a firefighter, spent his life saving and helping others and it just feels like they’re not doing enough for HIM. I actually said the words at the last appointment “Is this it, is this all he gets?”. Can’t really even remember the response but know it wasn’t any other treatment options. I wanted to go private but hub says no. Feel like he’s just so philosophical about it and it’s me that’s throwing my toys out of the pram. I’m not deluded I know that incurable means it’s not going away but I also know from being on here that they are plenty of men in a similar situations who are still here many years after an incurable diagnosis. Again, I don’t really need an answer just needed to offload it to folk that would get it!

User

Posted 11 Sep 2025 at 07:26

Hi,

I agree with Adrian, vent as much as you need on here.

Best wishes,

Kev.

User

Posted 11 Sep 2025 at 08:56

Originally Posted by: Online Community Member

Just needed to get it out. F&F are great but they just don’t get it. Just exhausted, drained and quite frankly p****d off.

Men and their partners who are dealing with stage 4 prostate cancer have my utmost respect. At one time, it looked like mine had spread further a field. For that period of time, me and my wife's lives were turned upside down. We were frightened and felt helpless. Family and friends didn't seem to have a clue what we were going through. Professionals often seemed uncaring, we felt like we were just a number that needed to be dealt with then ticked off the list.

It's great that organisations are making people aware how common the disease is but unfortunately this can lead a lot of them almost trivialising it. Everyone seems to know someone who has had the disease, made a complete recovery, and can still 'shag for England', and most annoyingly they think that telling you this will make you feel better.

Without experiencing the disease most people have no idea how prostate cancer can impact lives and the enormous pressure it can put on relationships.

PS: Did you both ever get out touring in your van?

Edited by member 11 Sep 2025 at 09:37 | Reason: Additional text

User

Posted 11 Sep 2025 at 20:37

I think the worse part I’m still reeling from (a year on) was how bluntly we were told ‘it’s incurable you might have about two years, here have these tablets…next’. We are educated people, we knew the situation wasn’t great but up until that point no-one had said that there was only one way this was going. The shock was indescribable and the feeling that you were on a conveyor belt was just horrific. It’s been a really difficult year. I feel very cheated. We spent most of our lives putting the kids first and looking forward to ‘our time’. Just feels like the biggest f**k you from the universe.

On a positive yes we’ve managed to get away a few times, Tanhill, Lake District and oop North in Pitlochry. Thanks for taking the time to reply. Just felt in a crap place yesterday and even though most days I manage to slap on a smile it just wasn’t working yesterday! Best wishes to all here going through this sh*t show Xx

User

Posted 11 Sep 2025 at 22:21

Hi,

I’m in the Lake District on a family jolly at the moment - though I feel like Dick Turpin robbing me at every turn. Can’t even contemplate what it must be like to be stage 4. I was lucky, caught it at 3.

Get some beers in, go see a few places. Come on here and have a chat - that’s if the 502s will let you.

Thinking of you - all the best,

SpongeBob

User

Posted 14 Sep 2025 at 03:01

Hi y'all,

Just arrived in Houston Texas on a three week road trip. First time driving in the states.. right turn on red is a new one on me and takes getting used to.

Agree with Spongebob.. definitely get out and see a few places.

Cheers everyone.

Kev.

User

Posted 14 Sep 2025 at 08:46

Kevt, if you haven't already done it ,look up the rules, some junctions have "no right turn on red" signs.

Thanks Chris

User

Posted 14 Sep 2025 at 12:36

Hi guys,

Although I got the all clear from my biopsy I consider my brush with PCa to be far from over as my older brother has just been diagnosed with stage 4 incurable PCa.

Even the brief steps I danced to get booted unceremoniously out of my local hospital have changed my whole perspective on life.

It was my 60th last month, my wife booked us tickets to the Ashes series as I've always wanted to see England in action against the dreaded foe. But it's not in England again until 2027. But she booked for the first game in Perth, western Australia in November this year!

Old me would have said; it's too far, it's too expensive, it's too soon, yadda, yadda, yadda...

But new me said f##k it, we're going and we're going to suck every drop of fun out of it we can.

It doesn't have to be the other side of the world, it doesn't have to be a once in a lifetime thing, it just nees to be for you and yours.

I was so proud to attend a Barnsley match with my brother and his family yesterday. He and his grandson were match mascots for the game and they had a wonderful time, making memories for us all. I want us to do so much more, subject to his illness, and we will be planning as much as he wants to make things more bearable.

Chatting here has been so beneficial, but also so hard for me. Reading the heartbreaking, inspiring, frightening and frankly unacceptable experiences of so many good men and their families has been such a shock to me.

I've got a bottle of Hawkstones lager from Jeremy's pub in the fridge and I'll be listening the T20 before raising a glass to the Red Roses when we beat Scotland this afternoon.

Anyone else want one while I'm going to the bar?

Mick x

User

Posted 14 Sep 2025 at 12:40

Effing error message, why does it always strike when you've typed a great missive?

Suffice to say I'm not going to type it all again.

But I agree 110% with the jetting on and doing things ethos in the last few messages.

We are off to Australia to watch the first Ashes test in 8 weeks. Can we afford it, hell no! But I'm bloody well going anyway.

Enjoy the T20 this afternoon and joing me in a lager or two when the Red Roses meet Scotland this evening.

Anyone want anything while I'm at the bar?

User

Posted 15 Sep 2025 at 12:10

Absolutely agree with you guys . Get out there while you can. Im so glad we got out to visit places when we could.

Since my diagnosis in Jan 2018 we’ve been to Finland, USA 3 times plus the Mississippi cruise (you must do it on an authentic steam powered paddle steamer, and Canada. Plus the shorter haul places like Spain, Prague and Jersey many times. Who knows if wed have done that without my Terminal (incurable) diagnosis.

Mick, going to see the cricket on the Ashes Tour in Perth is going to be Magic. A great trip as well. We went to the Oval in 2011 to see Tandulker get his 100th 100 but it wasn’t to be. Never forget the day as Amy Whinehouse died that day. We had hospitality as well and so lunch and afternoon tea and getting slightly tipsy on the booze …

We’ve never been to Western Australia but we did 5 1/2 weeks doing the rest of Oz. That was back in 2000 and the kids were quite young then. Also been to New Zealand twice. It is so beautiful especially the Southern Glacier part.

Also so sorry to hear about your older brother Mick. Hoping he can find treatment that holds it at bay for a good while.

Kev, We’ve done over half the US States but never Texas and surrounding area. Once you’ve driven for a few days in the US you’ll be well used to it. Driving is a bit more laid back than here.

User

Posted 15 Sep 2025 at 14:38

Can't beat travel, there was a beautiful sunrise over Walmart this morning.

Gonna visit NASA today, before hitting the road again.

As for driving, with all the sudden lane changes, it's a bit like driving on the M1 in Bedfordshire.

Phil, there's a workshop in Houston that specialises in restoring DeLorean cars.

Cheers all,

Kev.

User

Posted 15 Sep 2025 at 21:13

Thanks for your message Mick, really appreciated it. I can’t reply though, something about me not being a member long enough or posted enough. :( anyhoo. Sorry to hear about your own experiences. My husband has been shouting from the rooftops to his friends and colleagues about getting tested so much so that a colleague has also been diagnosed having had no previous symptoms. I think men should be offered testing like women get mammograms. Hopefully something we will see in the not too distant future.

What I should say as a caveat is that not all the care we have received has been below par. Some lovely nurses and health care professionals. I just feel that when you are being told something so devastating, eye contact and a bit of empathy go a long way as opposed to a blunt delivery that causes any rational thinking to immediately go out of the window.

Asked hub about a bucket list the other day to be told he doesn’t have one, just wants to spend time with friends and family and get away in the van when we can. I guess some might call it boring, he prefers to refer to it as contentment. How ironic that he says he’s been lucky. I sometimes need to take a leaf out of his book but it’s hard. All the best to all the folk! X

User

Posted 15 Sep 2025 at 21:46

Originally Posted by: Online Community Member

Hi Stronggard395

Your husband's mental fortitude and philosophical outlook on life probably comes from him being an ex-firefighter. He'll be used to the uncertainties of dangerous of situations, which will serve him well when dealing with this disease. His work experiences will help him cope with PCa and keep it in perspective.

Edited by member 16 Sep 2025 at 04:41 | Reason: Reduce text

User

Posted 16 Sep 2025 at 06:08

Some sad news to report. John Moriarty who very ably led the support group linked to the Royal Liverpool Hospital passed away yesterday after a short illness. For all associated with the group this is a real shock. He was an inspiration to all and will be sadly missed. Deepest sympathy to his wife and family. RIP John.

User

Posted 16 Sep 2025 at 06:48

Hi MGOR.

I'm very sorry to hear this sad news. Although I didn't know the gentleman, from some of your posts, I know how beneficial the support group that he led is. Anyone who volunteers their time to help others has got to be sorely missed.

RIP John.

User

Posted 16 Sep 2025 at 10:35

Originally Posted by: Online Community Member

I'm Al, I'm 57 and I've got Stage 4 PC as well and have just finished Chemo, still getting the Darolutamide pills and the hormone injections. Chemo was rather dreadful and to be honest if your husband can avoid it, it may be better for his quality of life. I've spent the last 3 months being chronically fatigued, just not wanting to do anything at all. Dragging myself to meet friends and then just sitting in a chair being monosyllabic.
The chemo drug for PC would be Docetaxel. This works by stopping cells from dividing and multiplying. unfortunately it doesn't just target the cancer cells, it affects all cells. Thats why I am immunosuppressed - my white blood cells are not being replaced so there is nothing to fight disease off with and I heal really slowly - I have cat scratches on my hands from weeks ago (Thanks, Gwin, Finn and Artos).
What the Chemo does is stop the cancer cells reproducing, the hormone injections and darolutamide stop the production of testosterone in the first place.
So it may be that what they are trying to do is stopping the cancer from spreading without doing a life changing treatment like Chemotherapy.

My prognosis now is that I should be “free” of cancer for the next couple of years then as it starts to spread again I’ll get Chemo again then another couple of years (shorter this time) then Chemo etc etc. It’s a cycle of vastly reduced cancer then chemo – Some peoples opinion is that it’s the chemo that takes the most out of you and it’s having to go through the chemo several times is the bit that kills you off. Some people elect not to have the chemo and let the cancer spread rather than going through another round of chemo.

As for the bucket list, quite a few people have said to me “are you going round the world Al?”. The short answer is No. I want to spend quality time with my friends and family. Like going to see the leaning Tower of Pisa for the weekend for instance: get parked at the airport, walk through the airport stand in queues, check-in\security\wait for ages, cramped plane with other people’s germs. Faff around at airport, get to hotel exhausted, go to leaning tower, food etc, fly back.
OR organise BBQ or Film night with mates & beer
OR go in van to a pub campground, nice meal, invite friends.

I know which two I’d far prefer to do, use what energy I do have to do nice things. The influencers annoy me, “oh you haven’t lived until you seen the sun come up over Machu Pichu” – well actually it’s nearly a 24 hour journey to get to Machu Pichu – so I’ll stay in the hotel bar, you can do it 😊

Anyway, that’s my opinion on it, feel free to ask questions.

User

Posted 22 Sep 2025 at 17:38

I agree with you there Al, I have a trip to Rome coming up. Mrs SpongeBob has a lifelong ambition to go. So we’re off and will also be our Silver Wedding anniversary, To boot my mate and his wife have hijacked it and are coming aswell. All well and good but I’ve had to book tours in advance for the likes of the Vatican and Colosseum, so instead of strolling around in a relaxed manner seeing the sites and sitting in bars we will have deadlines and queues. The Vatican sounds horrendous. But it will tick a box for Mrs S, and I do want to see the Colosseum.

User

Posted 23 Sep 2025 at 04:35

Good luck with the Vatican, it was rammed solid when we went. Colosseum was good though, and the Trevi fountain is nice around 10pm as there's not many people around and it's lit up at night.

Just rolled into Amarillo on a long drive from Dallas tonight in a raging thunderstorm. We're into our second week of our road trip and on our second hire car because the first one was losing oil. My wife's happy, she just bought a pair of leather Cowboy boots which look great. If you ever find yourself in Austin, be sure to watch the Bats. Mexican Freetail Bats come out at sunset in their hundreds of thousands, we watched a constant stream of them fly from under a bridge over Lady Bird Lake for half an hour. I've never seen anything like it in my life.

Anyway, I won't bore you with all the details so I'll drink my Lone Star beer and see Y'all later.

Kev.

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