First post, Hi everyone!

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Hi everyone,

Been meaning to join up for while but kept putting it off. Not really sure why as, as they say, there's strength in numbers. So here I am, 55 with incurable metastatic bladder cancer to multiple lymph nodes. Recently married, October last year after a nearly 14 years engagement. Thought we'd better finally get around to tying the knot. One very hastily arranged wedding took place on the day of storm Emmett, mainly funded and organised by our amazing family and friends. Despite the storm it was the most beautiful and happiest day of my life!

So how did I find myself here you may ask. Well, it all started in mid April 2022, I noticed the colour of my wee was a bit odd. Looked like vimto. I drink a lot of vimto and I thought maybe I've overdone it, had one too many as they say. So I cut down. The weird vimto shade of wee continued. Then I remembered the Aldi sugar free sweets I'd been scoffing of late, maybe it was them doing it. So I stopped buying them but still it continued. Started drinking more water cos someone said it could be down to dehydration. The lab I work in is always boiling hot as the manager is so incredibly nesh, he still wears a bubble jacket in the middle of summer! Drinking gallons of water made no difference, it just made for a raging bladder and mad dashed to the loo. So what on earth was causing it? At no point did it look bloody or I would have been more concerned. Eventually after 2 weeks my other half put her foot down and insisted I phone the docs so the following morning I joined the 8am phone call race to get an appointment at the docs. Got through at 8.11 and all appointments had been grabbed already but I'd get a call from the nurse practitioner at some point during the day. Tina rings later on in the day and she says it sounds like a UTI, prescribes some antibiotics and asks me drop off a wee sample. About 5 days later she phones me and says she's going to change the antibiotics and is going to book me in for a Cystoscopy. Ohhkayyy!! We resist the urge to Google but it overwhelms us and we give in. It suggests a list for reasons Cystoscopy, bladder stones, kidney stones, blah blah etc etc and right down at the bottom bladder cancer. We're still not really concerned, I feel absolutely fine apart from the weird vimto wee.

It's now May and the day of the cystoscopy comes, my other half isn't with me and is working as I think we'd pretty much convinced ourselves it was some kind of stone causing it. Alas, pretty much the second the camera entered the bladder the consultant said, very matter of factly "oh that's a tumour, its going to have to come out" And that was that. Referred to Urology Consultant at Halton. He doesn't seem overly concerned, can do a resection, some chemo. Jobs a goodun. He arranges a T.U.R.B.T. I'm officially in Acronym central!

It's July 23, the hottest week of the year and I'm stuck in hospital having my TURBT procedure. It's boiling, they've got portable Aircon units which work great when the sliding doors to ward are closed but it's a ward with 10 patients in it who need regular obs so if course the doors are open most of the time so that's working well then argh but it is what it is.

Following the procedure, the surgeon comes to visit us both. We're relaxed and thinking the resection part is over, now to get chemo over and away we go. Job done.

Consultant looks serious though. He's explaining that I have serious muscle invasive bladder cancer and would see us in clinic to discuss next steps. Not what we were expecting to hear...

We meet again in clinic and he tells us the outline plan would involve bladder cystectomy and ilial conduit. I would also require neo adjuvant chemotherapy to try to shrink the bulky tumour to enable easier removal of the bladder because he was unable to see the opening of both ureters. He would refer me to see an oncologist at Clatterbridge on the Wirral.

Since then I've had numerous rounds of chemotherapy and chemo/ radiotherapy combo which actually managed to get rid of the main tumour in the bladder which was great but sadly there was lymph-node spread in the pelvis in multiple areas including the retroperitoneal. We were then told that there was no chance of cure and that the only treatment going forward would be palliative. I have been having immunotherapy since August 23 which isn't working and my consultant, when asked, said I have, ballpark figure, a year to live, could be a bit less, could be more. I am now on a palliative clinical trial (Re-Arm) via Clatterbridge Cancer centre in Liverpool. If that doesn't do anything to help slow the spread then they'll move me on to a HER2 trial. Basically I'll take anything they'll throw at me cos I ain't ready to leave this mortal coil just yet!

My consultants have been very confused as to how a then 53 year old got a cancer that pretty much mainly affects those in their mid 70s upwards. Then earlier this year we were alerted to an issue with Phillips CPAP machines that had been found to be faulty. The noise abatement foam in them when used over a period of greater than 3 years was breaking down and producing carcinogenic dust and this was being inhaled by users. Hot or humid temperatures could speed up the degradation of the foam too so machines that were used for shorter periods of time could be affected too. The heat and humidity affected machines were mainly causing cancer in the US but there are others all over the world in cooler climates who have developed cancer as a result of long term use. We were alarmed as you can imagine. I have been using Philips CPAP machines since 2011 so we contacted my sleep physiologist at the hospital and they provided us with the serial numbers of the machines I'd had over the years and how long I used them for. I had used one machine for 5 years and another for 4 years! Upon checking with Philips we found out that every machine I had ever used was affected by the foam degradation issue!! We are now in the process of taking legal action against Philips. My last machine was swapped out in January 2023 as a result of a worldwide recall which has been ongoing since 2021. The UK MHRA played down the affect on UK users claiming that UK users weren't at risk as we don't have a hot and humid climate but they totally ignored the proven fact that the issue with foam degradation is also caused by long term use of 3+ years too meaning that there could be a great many people also affected in the UK. It's so frustrating to think that a device that was meant to be keeping me alive could be responsible for killing me.

Anyway that's my story, we take each day as it comes and try to enjoy what time we have left. Humour definitely helps!

  • Hi Skraggy and a warm welcome to the forum though sorry you have to be here. Humour definetly helps and you will find plenty of that here, as well as support, advice or just a chat. Everyone here is in the same boat so we understand what living with terminal cancer means and how it effects us and our families. You will find a great bunch of people on here, mostly ladies but a few guys who will happily share their experiences with you and will help you however we can, as only we can. Congratulation on getting married and wishing you and your wife a happy Easter, take care.

    Eddie

  • Hi, welcome to unvolatears gang, let's all embrace what's ours and good luck Slight smile

    Lee

  • Thanks Eddie Slight smile That's really good to hear, think I'll feel right at home here. You too have a lovely Easter weekend. 

    Carl

  • Cheers Lee Grinning That's good advice and we certainly will. Have to ask what unvolatears means? Google wasn't much help Grinning 

    Carl 

  • Hi Skraggy or can I call uou Carl., we are a supportive group alot of different cancers and treatments.  Alot living well past our sell by dates, I was told 12 to 18 months in 2019, nobody nows how long we have. We do have serious chats and laughs. All I'll say is be kind to yourself. Oh yes I'm  under Clattabridge Liverpool and on immunotherapy having my 43rd round tomorrow. You take care keep posting xx

    Moi

  • How are you doing Lee. Have you been able to get outside with your dog. How's the eating and sleeping going, sending hugs. Happy Easter enjoy your eggs xx

    Moi

  • Hi and Welcome!

    Very entertaining introduction - too good for a "hello!" post.  Have you considered a blog?  

    I love a trial as well!  "Tomorrow's reatment today".

  • Not to be in this club Blushbut we are, so let's enjoy what we have

    Lee

  • Been eating and sleeping well these last few days and walked my dogs legs off , hope you're well n good

    Lee

  • I'm good, plodding on as we do. So glad to hear your feeling a lot better. Bet the dog was made up you walking his legs off lol. I'm. minding My sisters cat, the dame thing just hides only comes out to eat, ever feel used, by a cat Cat2 xx

    Moi