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User
Posted 07 Jan 2020 at 17:30

It’s funny how we get so differing effects from the hormone therapy. Good reading for newly diagnosed members on the Forum 

User
Posted 09 Feb 2020 at 17:38

Just a few lines to encourage you young men in the G9 club. The ED situation has improved as we are able to have  both intimacy and fun 🤭though we were reminiscing about years ago and giggling.... well what else do we do when the weather is too windy to play out. David was not able to get on with the NHS pump provided, so he bought an battery pump from eBay it was the princely sum of £15.00 and it’s much better, as long as he remembers to change the bloody batteries, it works a treat.

We have also been busy cutting back a big tree and chopping logs for fire wood. Though our muscles ached, and we were knackered it was good to see the wood stacked up. More important it’s just good to get on with life, do our stuff  and forget about the cancer for a bit.

We had a brilliant week away In Northumbria too, walking and enjoying a new area. 

Another  project will be a concert where David will play and sing to raise awareness, about living with PCa 

I’m not posting  just to share our mundane lives, but to share how good life can be , most of the time, and how

we enjoy life. 

 

That doesn’t mean we don’t have dark days especially near the dreaded PSA time.  But it ain’t all bad, and good

times can be had. David’s last PSA was 0.3 and he’s been  off treatment  over 18 months. I hope this gives some encouragement and puts a smile on a few faces. 

Leila 

 

 

 

 

 

 

 

Edited by member 10 Feb 2020 at 15:14  | Reason: Not specified

User
Posted 09 Feb 2020 at 17:50

Leila 

thanks for such an upbeat posting I am now four months post treatment and have four weeks before I get my key PSA and testosterone blood test. For the last two months I haven’t even thought about my prostate cancer but now I have to book my blood test ready for my next review it starts to pray on my mind again. But like you I am trying to enjoy myself to the full and I am out cycling every day as long as it’s not raining and even when it does I have a turbo trainer in my garage

User
Posted 09 Feb 2020 at 17:54
How lovely Leila xx Rock on both of you

If life gives you lemons , then make lemonade

User
Posted 09 Feb 2020 at 19:56

Thank you both. This forum has supported me in my dark times, made me laugh, and given me advice hope and on line friendship. Will forever appreciate the time and support I've received from you all. 

Leila 

 

 

User
Posted 09 Feb 2020 at 22:02

Great to hear from you Leila. You and David keep up the good work and having fun. I'm looking forward to the end of my HT. 

Dave

User
Posted 10 Feb 2020 at 13:22
What a lovely posting.

Thank you for sharing.

Clare

User
Posted 10 Feb 2020 at 19:09

Thank you Leila for such a great post. It gives me confidence for my future.

I am 4 months now since my last Prostap injection and don’t feel any different yet. I’m hoping I’ll feel the HT wearing off soon.

Hoping the future is bright for you both.

Phil

User
Posted 18 Apr 2020 at 12:08

David is due to have his PSA in April, he is understandably a bit reticent in the current climate. He has also been advised he’s due to have a bone scan, again a bit of reluctance on his part. He is thinking of leaving the above for a couple of months and then review. Our underlying concern is his G9 Tb3 diagnosis. He has been off treatments for two years now, last PSA was 0.3 

He has the usual aches and pains of a 70 yr old, still working in the garden, playing and singing every day. When I suggest he moans too much his response is “I’m 70 there is  a lot to moan about” said with a huge grin.

Other wise he’s happy enough, we are so pleased we have a large garden to wander in during these interesting times.So, advice, do you think it’s ok to wait, or should he have the scan and tests, GP surgery seem ok with the wait.... but they are not the most informed up to date folk. I’ve written to his consultant but it takes a while to filter through the system. 

Thanks

Leila 

 

 

Edited by member 18 Apr 2020 at 12:13  | Reason: Not specified

User
Posted 04 May 2020 at 15:01

David is having a bone scan and PSA tomorrow, today we are both niggly,wobbly whatever term suits. Being G9 Tb3 he feel he’s  always in the waiting room for the next stage. So he is now outside  with his compost bins and trying to keep calm. His last PSA was 0.3 so that’s is good, but... his worry is he was only 8.5at diagnosis. Oh well, has to be done. Does the stress ever leave.

Its 4 1/2 years since diagnosis. 

Thanks for letting me moan.🥺🥺

 

Leila 

User
Posted 04 May 2020 at 15:13

Thanks for the update Leila. Best of luck for the PSA and bone scan results.

I am G9 and T3b with a relatively low PSA on diagnosis of 27 and I am feeling confident I have this licked now. I can’t think about what could happen because that will only hurt my today’s .....

I am gonna miss my next 3 monthly PSA due to Covid restrictions which was only at my behest anyway as the hospital were happy to leave it 6 months . So may try to fit it in or wait , not sure yet. 
My biggest worry is getting my T back as it’s caused me a lot of mental issues. But it does seem to be easing as I was told on here and by my consultant.

So , hope all goes well tomorrow. 🤞

Phil

User
Posted 04 May 2020 at 16:04
I don't think the test anxiety ever really goes away - some would say it gets worse as time goes on!

Good luck tomorrow x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 May 2020 at 07:34

Thanks for the support Phil & Lyn. The angst does seem to be consistent, just has to be managed. Phil, I assume your T is testosterone? David had a T test in January and it was 6 I think if different I’ll repost. His libido is returning, and he feels in his words like a bloke again. As for mental health, it’s been hard for him, he had some counselling, in the form of art therapy, but it wasn’t for him. He decided music was his way forward and he ploughed into his job as a muzo, rekindling his love of the violin from school days. As time goes on he did some charity gigs this helped a lot. The whole episode brought up painful emotional challenges, tears fears and pain. Thankfully as time goes on he seems to have got settled. David is someone who overthinks most things, and he’s a typical artist, never good enough, could do better. So I suppose taking his character into account he’s doing well, and he’ll be better when the results come in.  I also know what a goal hanger is now.⛹🏼‍♀️🤾‍♂️🏀
Leila

Edited by member 05 May 2020 at 07:38  | Reason: Not specified

User
Posted 06 May 2020 at 13:20

Hi Leila , did you Google ‘Goalhanger’ ? That made my day 🤣🤣. 
Davids T will possibly go up some more yet, I think 6 is low end of normal. The loss of Testosterone does cause the mental issues in some men unfortunately. It really hit me hard but I was also very lucky to get early counselling from the NHS. I don’t know what I’d have done without it. I was a wreck the first few times as stuff I’d buried from my childhood came flooding back. Counselling has helped me deal with what I never dealt with before. I have 1 more session left and I’m gonna miss them...
Has been so very interesting though learning now how your childhood affects how you act / behave / think as an adult. 

So I’m 7 months from my last injection and according to my s/nurse have maybe another 7 or 8 months before I get back to whatever is normal...

Its funny you say that David overthinks things. I am just the same and I am an engineer. My counsellor says my brain wants an answer to everything but it’s not always possible...🤦‍♀️

Its great David has managed to dive into his music to help emotionally, and to do charity gigs is so good of him. Am in awe if anyone who can make music 🎶 

Good luck and keep safe. Hope all goes well.

Phil

User
Posted 07 May 2020 at 10:44
Hi Phil,

Haha, no, I didn’t google it, I asked David, as he’s a mine of info on lots of things, including footy, he is a life long Charlton supporter, being from” sarf lundun”

David seems to manage his angst fairly well, with the occasional blip, the over thinking is a life long thing, though he again seems to manage it.

Having an inquisitive mind about everything can be both an advantage and disadvantage, he can’t post on here as it puts his brain into overdrive, so it’s my job to filter the info for him.

Thanks for the ongoing support and info, it really helps us deal with all this.

Take care.

Leila

User
Posted 07 May 2020 at 11:40

Ha ha, tell David I was never a goalhanger when I played 🤣. I started watching my local team , climbing over the fence so we didn’t have to pay. I moved to live with my Aunt when I was 13 and started going to see Southend Utd , Friday night up in the North Bank in the 60’s was great fun 😳,  and occasionally up to the smoke  to Spurs or West Ham wiv me mates, but never Charlton. Still go to Spurs sometimes now.

Good luck to Charlton , I think they’re gonna need it when they restart....

It’s  not uncommon to suffer mentally when on HT and for a good while after. It doesn’t get mentioned as much as the other side effects as I suppose we men don’t like to admit to mental issues.

Hoping he can get back to some kind of normality soon.

Take care,

Phil

User
Posted 07 May 2020 at 12:31

Hi Phil,

David said he’s never been to Roots Hall, but Alison Moyet is a fan.... so I’m told. Yep, Charlton are going to need all the help they can get ☹️

He should get his PSA results today and the bone scan results in two weeks, so hopefully normal services can resume. On a positive note he’s sorted out the compost heap, mowed the grass and I’ve done the weeding, and watering. Stress has its place. We have a lotta garden to manage. 

Charlton is a life long commitment, he started going at the age of 10 on his own. He wrote one of the team songs many moons ago, it’s not often bellowed out on the ground but sometimes. 

“I’m I’m eaven SE7 I’m in “eaven” Charlton” 

Take care

Leila 

 

 

 

 

User
Posted 07 May 2020 at 13:03

Leila, love the song 🤣🤣 ..

Roots Hall is a dump but went back to watch Plymouth play there couple years ago and was in the North Bank again - brought back so many memories.

Sounds like you two keep busy , always good for the mind. I remember my Mum telling me once when I was little - ‘don’t lay in bed if you’re awake - it’s not good for you’.  I think that translates to ‘keep your mind busy and it won’t linger on the bad stuff’ , or maybe there was something else she meant 🤦‍♀️

Fingers crossed for the PSA results and the bone scan. 

Phil

User
Posted 07 May 2020 at 19:32
Well, PSA came back, a day late, we were expecting 0.3 or above but it was 0.1, well, we were both ecstatic, delighted what ever term fits. David had to call the health centre a second time just to make sure he heard right. Now he just has to await the bone scan results.

A little celebration in the garden I feel is in order, we had a lovely bottle of red wine between us, it was lovely.

Thanks for all the support.

Leila

User
Posted 09 May 2020 at 07:49

That’s great news Leila, fingers crossed for the bone scan.

Phil 

 
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