Hey [@Jellies]‍ 

Great to hear from you and learn about your recent experiences on this winding journey we're on. 
 

First off, getting your PSA down to 0.2 is tremendous! The best I achieved was 0.6 briefly before chemo started whilst on ADT. I'm hoping it drops to your levels now the radiotherapy has ended. I get tested in early January so we shall see. 

It's brilliant you're able to hit the slopes. Let's hope you can keep returning despite everything going on. Physical exercise is increasingly being seen as a significant aspect contributing to not only quality of life but overall longevity. I need to get back to it. 

Overall I'm feeling pretty good mentally and physically. The unpleasant/painful side effects from the zapping are reducing rapidly thanks to the prompt intervention of wonderful nurses. Disposable undies will be retired this week . 
 

My long standing serious illnesses policy claim with Vitality was denied on very spurious grounds. After studying my health records they saw I had two high ish blood pressure results and said I should have disclosed it. I was never treated because my blood pressure went back to normal. Also my GP said there was nothing to worry about. Their view was that effectively my policy was null and void from day one due to a failure to disclose accurate information etc. I will appeal. Very disappointed and fed up about that. 
 

It will be good to hear how you cope with the treatments and how life is, appreciate your messages very much. 
 

You've got this!
 

M
 

[@Matthew2022]‍ 

That is unbelievable.  No wonder insurance companies have a bad name.  Blood pressure readings are super unreliable so I find it incredible they could turn down your claim over that. 

But good to hear you are in good spirits.  I've found getting into the gym to be the best tonic for me so I'd recommend it.  Even better if you can get a trainer that knows your situation and can push just the right amount.  The guys I have are fantastic.  

I did my second chemo on Fri so still a bit zonked.   But all my bloods were good and my PSA was down to 0.07.  So at least that's heading in the right direction.  Hopefully my taste buds will have recovered a bit by the time Christmas Dinner comes around. 

Keep plugging away! 

Rory

Hey [@Jellies]‍ 

How are you keeping with everything and your treatments?

Been thinking about you. Really hope you're doing ok. 

Today is a year ago to the day my GP called to give me the PSA results of 61. The beginning of this terrible journey. 

Anyway, look forward to hearing from you when you're ready  

Matthew

Good to hear from you [@Matthew2022]‍ 

Just finished cycle 4 chemo last week.  Was completely exhausted for 4 days afterwards but starting to recover now and feeling much better today.   I signed off work in January till end of treatments so just focusing on getting through all the treatments and recovery. All my numbers so far are good and my PSA is now less than 0.03 although still a looonnng way to go with radiotherapy and 2-3 years of ADT ahead.  Went out and bought myself a fancy new ebike today and looking forward to getting out on two wheels again as the weather improves.

Quite the anniversary we'd all rather didn't happen. How are things going with you?  

Rory

Hiya [@Jellies]‍ 

Appreciate your swift reply, its good to hear you're pushing through. So far so good apart from the fatigue. I found day 4/5 after each cycle left me the same way. Normally I have good consistent energy levels so the decline felt really odd. Very wise to take the time to focus on your treatments and recovery.

I have started back at the gym like you recommended. We have all the Peloton gear (thanks to my gym fanatic wife) and I'm finding it motivating and effective. Feeling sore at times but overall increasingly stronger. Love the ebike purchase. What did you get? Did your wife get one too?

Your PSA level is brilliant! My last check was 5 weeks ago at 0.51. Oncologists were pleased and expect it to drop further as the radiation keeps radiating. I'm generally well and feeling positive. My wife is okay mostly but sometimes sheds tears worrying about me and fearful for the medium term future. It's hard to witness.

Lots going on. I'm about to start a legal challenge to the unjust insurance claim denial. Back to work full tilt. New house plan's approved after an appeal in January. Spending quality time with the people we love. Preparing for our daughter's wedding in the USA in May. 

Stay well, friend. Keep fighting the good fight. 
 

Matthew

hey 

i just wanted to jump in here ,and let you guys know,how appreciative i (and probably a hell of a lot of silent others) are of the updates on your stories in the past year,,the little nuggets of info your sharing mean a lot,in the comparisons of my own journey

i was diagnosed around a year ago too,and had the full removal operation in may last year,my psa is due but last was 0.02,from a high of around 8 before my op

i think i've had it relatively easier than you guys with no chemo or radio etc post or pre op

if there's anything i can moan about really is the "still" worry of incontinence,there's been no embarrassing encounters, but if i do anything strenuous, i seem to leak a little

also,i've been on the full rainbow of different strength and variations of the blue pill,,the only success they have is giving migraine like headaches,fortunately my wife is more appreciative of me still being here rather than being upstairs

positives are that its been a year ,and,well,,,it's good to be more knowledgable,,and i'm certainly appreciative of the doctors and nurses who continue to be there for me

i wish you guys well,and all the luck in going forwards

and look forward to the updates

doug

Hi Doug, good of you to chime in and welcome to our little chinwag! I'm pleased you're getting something out of our posts. This horrendous disease is more endurable if we work together.

We three are all the same relatively young age (early fifties) so will undoubtedly appreciate eachothers journey. It looks like you're responding to your treatment pathway which must be a big relief. The issues down below are a worry and can have an impact on our relationships. I've faired pretty well but will be taking the blue pills daily to increase blood flow etc. Hope you can find away forward. And yeah, our partners patiently understand. This part of life has to be compromised to a certain degree to give us a fighting chance. Sigh.

Is that you on the dirt bike? Very cool . 

Feel free to share anytime and best of luck. 

Matthew
 

Thanks Doug 

So glad you had a successful op.  Getting my PSA of 0.5 after going through the op was definitely the worst single day of this whole ordeal.  So I wouldn't underestimate your success so far. With a bit of luck you have nailed it. If the blue pills ain't working the injections are worth a go and not as bad as it sounds.  

Rory

Hi 

I just wanted to say thank you all.

My Dad is at the start of his journey and awaiting all the dreaded scans/biopsies etc after a high PSA result. It's hell waiting. They have warned him they believe it will be advanced (psa / examination) and I've been so lost and sad having felt our life has been changed overnight. I want to be strong for my Dad and take this away from him but feel powerless and scared.  
 

I've just read all your messages from the start of your respective journeys and have been comforted by your positivity and courage. I just wanted to say thank you and wish you well, but also let you know that there must be many other silent people out there also finding reassurance from gate crashing your conversation like I have done. Thank you for helping us all. 

How are you all?