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



Why can’t they treat my Lymph node PCa

Posted 10 Mar 2023 at 15:26

So sorry to hear you’re struggling again mentally Phil.  Hope the counselling sessions will help to put things into perspective again.  Keep looking forward and making plans for holidays to look forward to. 
Thinking of you and everyone on the forum.

Take care,

Ange x

Posted 13 Mar 2023 at 13:06

Thank you guys/gals for your kind thoughts. Although I’m having a few really down days I am better than I was at the start when I was on Prostap. No idea if the Prostap caused it or it was just time for me to try to deal with my demons..  Hoping to get a call from the counsellor soon to arrange our first session. 

Really looking forward to our holidays … Wednesday off to Jersey (again) and down the Mississippi in May. Our oldest and his wife are expecting so we’ll be back out there in August… so excited about that. Hoping to fit in a visit to friends in Spain sometime too. 
Next year , hoping I’ll still be feeling ok , we’ve a wedding in Maine USA and possibly a visit to Japan with our youngest and his wife. 
Glad this disease isn’t yet stopping us getting away, or the exorbitant travel insurance…!

Regarding my Testosterone, I’d like to know just to see if it’s my treatment failing or if the cancer has become independent. Although I suppose either way it would mean onto the next Gen drugs. I still have a ridiculous hope that the PSA might have gone down. 🀷🏼‍♂️. 

I’m visiting the gym 2 or 3 times a week now and I’d recommend it to anyone to help not just physically but mentally as well. It’s been 4 years since my Tough Mudder and I’m enjoying trying to get back to that fitness again ( and lose my wine belly)…. 

Take care everybody, 


Posted 14 Mar 2023 at 10:33

Wow Phil, fantastic to read your update.  You certainly have such a lot planned and so much to look forward to this year with your wife and family.  Just got to do everything you can when you’re able to with this precious life. Keith finds his daily workout on his cross trainer helps him physically and mentally.  
We’ve not been able to plan anything during the last six months as Keith’s brother (who only retired three year’s ago at the age of 72 and then found out he had a progressive chronic lung disease) became virtually bed-bound in October last year and being single/living on his own has needed our help. Unbelievably sad/depressing to see as he was such a fit, independent person who has now become so reliant on others to care for him 😒 

As we all keep saying, do what makes you happy and enjoy life while you’re able!

Love to all on the forum.

Ange x

Posted 14 Mar 2023 at 11:19

Hi Ange. I’m afraid I find it only too easy to look backwards, probably as you realise there isn’t so much in front as you expected… Looking back for me is painful and I don’t know why my brain does that 🀷🏼‍♂️. Gonna be one of my first questions to my counsellor is how to stop looking back . 
Can’t wait to see Daughter in laws bump tomorrow 😁

Making plans is a great way of forcing your mind to look forward. We are trying to balance having lovely holidays with enough left in the bank for my wife to survive when I croak !… as she is 8 years younger than me and doesn’t get her state pension for another 6 years. She won’t get my private pension as I decided to not have the spouse option. 🀦‍♀️

You are so kind to be looking after Keith’s brother . It must be very difficult. Would you be able to fit in some weekends away? Would McMillan nurses be able to help? I know some people say they don’t want help. My Dad was like that, he brought my brother and me up to be very independent and both of us don’t like asking for help. 

Cross trainer is a great exercise. I also do cardio , Rowing and Bike but also weights, which is to try to stop the muscles wasting away and to prevent osteoporosis. I do push myself a bit more than I should but that’s me, but it feels good after. I’m going to add swimming in later.
I used to be a very good swimmer when I was young. Living 100yds from the sea wall helps. I was unofficial life guard but one day when I was 13 my girlfriend and her mates went swimming alone as I was playing football . She nearly drowned and had stopped breathing but her Mum was called and gave her kiss of life and brought her back. Lucky they lived right next to the sea wall . I felt very guilty for a long while. Bloody hell I’m doing it again 🀦‍♀️… 

Best get on with my chores now 🀣

I think someone on the forum has a sign off which says something like ‘live every day as if it’s your last’ Great words.

Take care


Posted 16 Mar 2023 at 09:08

Hi Phil, 

Thanks for your reply, we’ve had a week of swimming and walking in Cornwall at a lovely spa holiday complex. David’s swimming about 3/4 mile a day I’m doing  about 1/2 with a bit of walking as well. A glass of wine in the evening and a decent meal out. 
Counselling can be such a challenge, I admire anyone who has the strength to go trough it and address their demons from their earlier days, people sometimes think it’s the weaker people who choose it, but it’s not is it!

Reflecting and addressing past lives and learning how to manage our demons can be one hell of a challenge. 
Also delighted to read you are going to see your grandchild, such a joy.

We have a home gym that we both use, regularly, with weights rowing machine and a bench, it does us so much good in the winter when we can’t get out enough. He’s going to do more weights, we’d join a leisure centre if we lived nearer, but we live quite rurally. 
The garden is our summer exercise,  we have plenty to do here. We tend to go on holiday in winter as we have our veggie smallholding to manage, that keeps us busy. 
David seems to be doing well, PSA < 0.1 bloods all good, and he on the whole quite positive, though he does enjoy a good moan. His rationale is there is a lot to moan about. He has lost about a stone in weight, with his change in diet, sadly I have to work harder to loose weight, it’s my demon. 
 Keep going Phil, and take care.



Posted 28 Mar 2023 at 10:43

Morning everyone 😊. Just thought I’d see if anyone can help me. … 

I’ve just recently started feeling a bit sick in the mornings. Not from my stomach but seems to start from my throat. I brought up a little yellowish bile this morning. I thought I was ok but went to the gym and I’ve got no energy at all.

I take Solifenacin, Tamsulosin and the Bicalutimide first thing with my tea, before breakfast. As my wife is a dispenser in a pharmacy she asked her pharmacist and he says the Bicalutimide can cause sickness. So I should take it after breakfast. I will try that , although the instructions say it’s ok on an empty stomach.

Anyone else ever had this ?

I’ve also emailed my nurse to see what she thinks.  Liver tests are listed on my next blood test so hopefully my liver is not being affected by the Bicalutimide. 

So feeling a bit down today, probably because I couldn’t finish my gym session . I am a bit silly like that and try to push and improve every day but I suppose I have to accept I can’t do that anymore 🀷🏼‍♂️

Hope everyone is doing ok ?

Take care


Posted 28 Mar 2023 at 11:43

Hi Phil, 

No advice, I’m afraid, just hope you get it sorted out  soon. Remember, you did go to the gym, you did get out of bed. 

Take care


Posted 28 Mar 2023 at 11:49

I haven't heard of that before, so may be unrelated.

It might be an idea to get a GP appointment (if you can).

Posted 28 Mar 2023 at 12:05

Leila you sound like my counsellor  πŸ€£πŸ€£. She always told me to look for the good things as it’s easy to let the bad overpower them. You’re right , I did get up and go and did my best . I’m just not a very patient person …. 

Andy, luckily enough I have an appointment already booked for next week to look at me ears …. 🀷🏼‍♂️. Went to my hearing clinic couple of weeks ago and they said my ear looked odd inside and they’d never seen one like that before. They never mentioned it before so maybe somethings going on in there. I’ll mention the sickness to him.

Body is slowly falling apart ..🀣


Posted 27 Apr 2023 at 16:45

Just a quick update a week before my next consultation, which is a face to face as I asked my nurse to request for me . If, as I suspect my PSA has gone up again I will have some more questions and it’s easier in person.

I’ve started taking my morning pills after breakfast now and it seems to have helped a lot. Just had the odd day where I’ve felt sick when I get up.

Still going to the gym 2 or 3 times a week for 2 hours plus badminton, plus much reduced wine intake. Lost 5 or 6 pounds and pushing heavier weights and cycling/rowing further so feel better in myself. 

But , like we all do, getting very nervous nearer to consultation time… I am obviously hoping for a miracle that my PSA has steadied or stopped but I know it’s unlikely. So, I’m steadying myself for the inevitable. I expect I’ll be back on here asking for advice on which next Gen drugs to choose. That’s assuming my consultant gives me a choice. I’m also not sure if he’ll want another scan to see if the little bugger has spread its wings… 

Oh, nearly forgot… doctor says I have perforated ear drum so just gotta be careful and keep it dry till it heals. 

Hope you’re all doing well πŸ‘ Soon be summer time πŸ˜ƒ

Take care


Posted 27 Apr 2023 at 19:17
All the very best wishes Phil. I hope it’s good news or at least not bad news. Keep in touch and keep well. Battle those demons and stay busy. You know as well as I do that it keeps us sane πŸ‘
Posted 28 Apr 2023 at 16:45

Hi Phil, I’m hoping for a miracle for you too!! You have been doing everything you can to keep yourself as fit as you can and as busy as you can, so you’ll certainly have the strength to keep fighting.

With very best wishes to you and, as you say, summer is on the way…

Ange x

Posted 04 May 2023 at 13:41

Ok here goes, latest update from todays meeting with my consultant.

Well the miracle i was hoping for didn't happen and my PSA is now up to 6 now from 3.17, and Testosterone is not as low as it should be.

So he’s ordered a change to the meds. Stop the Bicalutamide immediately, replace the Zoladex implant with Prostap injections (which worked the first time for me) , and add in Dexamethasone once a day. He also wants a new scan to see what’s going on, within the next 2 weeks. Next appointment in 7 weeks.

So hoping the changes work for a while . I presume this is to keep me off Abi or Enza for as long as possible.

I suppose its a good as i should have hoped for.

He also mentioned the Dexamethasone can cause weight gain so have to increase my gym efforts and drag my mountain bike out again. Luckily we live right beside a large country park with lovely rides along the sea wall.

Posted 04 May 2023 at 14:51
Try cutting out the carbs too, worked wonders for me...
Posted 04 May 2023 at 15:01

Carbs, Yes, that’s something I need to look at. Especially with now taking Dexamethasone . 
I’m not very up on what is carbs… We do have quite a lot of Hello Fresh meals. Which for me is great as all the ingredients are there and they are fairly healthy, depending on what you choose obviously.

But I’ll start swatting up now πŸ‘


Posted 09 May 2023 at 11:28

Got a call today from X-Ray dept to say that my CT Scan is classed as urgent and they booked me in for tomorrow. 
Booked my next injection of Prostap for beginning of June , replacing the Zoladex. 
Consultant said we’ll do a 1 month as he wants to see if it’s working as soon as possible. 
Feeling very, very nervous at the moment. Just got to hope the Prostap works like it did at the beginning 5 years ago, and that it doesn’t mess with my head so much . Not sure I will be able to deal with that again but start with new counsellor Thursday, and it’s a lady which I’m pleased about as I don’t think I could open up about my childhood to a man 🀷🏼‍♂️

Trying to keep as active as possible , just got in from Gym and I pushed hard and I’m knackered which is a nice feeling.
Not quite the 3 peaks like Irun and co. but it’s enough for me… 

I’ve tried looking up Dexamethasone on Dr Google but not that much info for use with Hormone Therapy for PCa. Maybe I’ll open a new thread on it. 

Take care everyone, 


Posted 10 May 2023 at 12:37

Hi Phil 

Oncologists always say urgent this and urgent that mine is the same had to have an 'urgent' scan and an 'urgent' full bone x ray last month for my next appointment on the 1st of June then the nurse says there just routine because it was 12 months since I've been diagnosed,maybe them saying 'urgent' makes them feel good,at the end of the day what will be will be just keep looking after yaself eating well and keeping fit,not a lot you can do about those nasty little cells inside us,just try and keep them at bay for as long as possible.

Regards Phil 

Posted 10 May 2023 at 12:43

Yes, I think all my scans have been urgent too 🀣

I think my consultant wanted them done before we go on holiday on the 20th for 2 weeks. That way he’ll have all the info he needs when I see him again in 6 weeks time. 

Funny how you get nervous even for a scan when you know you’re not getting results till later 🀷🏼‍♂️



Posted 10 May 2023 at 13:37
I think 'urgent' is so that it isn't put on the routine scan waiting list. In our area, the wait for routine scans is over a year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 10 May 2023 at 17:12

Such an anxious time for you Phil. Hope you can go away and chill out for the two weeks.  Everything crossed for the Prostap to work well for you and for good results to come back to.

Ange x

Posted 10 May 2023 at 17:21

Yes Lyn , I do actually feel very lucky that they’ve arranged the scans so quickly. Had the CT scan today and bone scan next Tuesday.

Thank you Ange. Fingers crossed the little bugger has not moved on anywhere else. 
Just over a week to go before jetting off to New Orleans. Then up the Mississippi on a paddle steamer to Memphis to say hello to Elvis … soo excited …

Got to make the most of this life, we only get the one … 


Posted 10 May 2023 at 18:22
I have everything crossed for you - have a brilliant trip x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 10 May 2023 at 19:22

Fingers firmly crossed for you. Have the best of holidays and I’m not at all jealous ( honest) 


Posted 10 May 2023 at 22:19

Thanks Lyn , Leila.

We will have an amazing time and hopefully not one thought about PCa…. 


Posted 17 May 2023 at 10:27

Hi Phil,  just wanted to say, now your scans are done, have a great holiday and all the very best for your results.  

Take care,

Ange x

Posted 17 May 2023 at 10:39

Thank you so much Ange. Soo looking forward to it 😁 Really need it …


Posted 26 Jun 2023 at 12:31

So back from holidays now. New Orleans and Memphis were magic and the paddle steamer was fabulous. Civil rights stuff was eye opening. To realise I was 13 when ML King was assassinated ( we saw where it happened) and segregation still existed then in the US 😳

Had my consultant Telephone appointment Thursday, on the way to Jersey last week. He actually called while we were in Duty Free 🀣… Not good news though. My PSA has gone up to 8 now from 6 a few weeks ago. Also have more lesions but he didn’t say where. Testosterone was ok now though, although he didn’t say what it was. 

Wants to see me in person tomorrow to discuss further treatment and mentioned chemo tablets. 
My blood test was actually only 9 days after I started back on the Prostap . I am presuming he can tell already if it’s gonna work or not. 
I guess the likelihood is also starting on Abi or Enza now?? Still hoping the cancer hasn’t become independent yet. 

Wasn’t totally unexpected but still feels like a punch in the stomach . Feels like all my plans for my dotage are dashed . See my counsellor Thursday so maybe she help me get my mind back on track. 

We still had a lovely couple of days in Jersey this weekend. Weather was cracking and our son and his wife and her bump all doing well. Lots of nice food and a bit of a paddle at the beach.. 
Unfortunately it took nearly 3 hours drive from Gatwick to Essex ( 55 miles)on our return yesterday due to massive traffic all trying to get through the Dartford tunnel. Using Luton next time when the baby pops out 😁. 

Well hoping you guys are all keeping well and enjoying this crazy summer weather… I love to hear how you’re all doing πŸ™‚


Posted 26 Jun 2023 at 13:49

Hi Phil

Great that you had good time in the States it's sounds fantastic,not so good about PSA rise but don't be down hearted it may be a blip and PSA may fall again on next bloodtest.

I've been in hospital most the weekend having a fairly large stone removed from my urether,woke up after surgery with a catherter in place which I've managed to dodge for the last 18minths,luckily it was only in over night,I'm still peeing blood tho and not the best of flow with kidney stent also fitted it takes a lot of getting used to,hopefully in the next few weeks these stones will be behind me with nephrostomy bag,stents and catherter being fitted and I can also get my PSA down being at 2.4 at mo,blood test at end of week and onco telephone appoint a week today,if it is another rise which I'm fairly sure it will be I'm putting down to all the work I've had done in the last 3 months and will refuse my oncos idea of starting chemo and giving up the enza,it seems like I'm spending more time at hospital than at home at mo.

Stay positive Phil and keep battling on regards Phil 

Posted 26 Jun 2023 at 14:09
Good luck Phil. Let us know how you get on ok
Posted 26 Jun 2023 at 15:11

Thanks Phil 🀦‍♀️. Sounds like you’ve really been through the wars. I hope you manage to get your PSA down and stay on your current treatment. I certainly won’t be jumping on the chemo train unless I’m sure my Onco believes it’s necessary.

I need to investigate the regime for taking the chemo so I understand what could be coming… and possible side effects. Also not sure how long the chemo treatment lasts for. I also have to consider my upcoming trips/holidays. We need to be able to travel in August to see our new grand baby. Plus next year we are planning on a trip to Japan plus a wedding in the US. I have a lot of questions for tomorrow, that’s for sure. 

Hi Chris, yes I’ll definitely report back πŸ‘


Posted 26 Jun 2023 at 15:44

Ahhh Phil, not what you wanted to hear, I hope your counselling helps put you back on track a bit. Please let us know how you get on.

Delighted to read you had a good holiday, what an adventure, and a bump to look forward to, when is the bump due?

Take care 


Posted 26 Jun 2023 at 16:01

Hi Leila, yes so excited to be Grandparents at last… bump is due early August. A little bit sad we will be long distance grandparents, but that is how it is. I also see that Jersey seems so much safer to grow up than the U.K. There are crimes and there are drugs but so much less than here. Everyone, including the kids are so polite and happy. 
Holiday was a fantastic adventure. As well as New Orleans and Memphis we stopped at some plantation houses on the Mississippi and heard the stories of the owners and slaves. So fascinating. Feel very privileged that we can do that. 


Posted 27 Jun 2023 at 13:27

So sorry to hear the outcome of your tests Phil… pleased to hear you had a fantastic time away in the States and then a super time with your family in Jersey.  Keep on looking forward Phil - not long before you have the pleasure of greeting your first Grandchild (yay).  

Hope you get the answers tomorrow that will enable you to do all you have planned for next year and many years to come🀞 

Keith has a telephone appointment next Tuesday for his latest results.  Can’t believe it will have been 4 years this August since his diagnosis followed by chemo and RT and two years since his last HT (Prostap).  We wait with bated breath!!

On a brighter note, we had a great time celebrating Keith’s 70th in Kefalonia, Greece, two weeks ago (decided we just ‘had to go all out for it’) so glad we did.  Keith’s brother was well cared for while we were away and we have more energy to be there for him.

Lots of Love,

Ange x

Posted 28 Jun 2023 at 12:04

Saw one of my Oncology team yesterday, not my main man though.

PSA now gone up to 8 point something which she said shows the Prostap isn’t working properly.

So was expecting the Docetaxel discussion but she instead said they are putting me on Abiraterone and leaving the Chemo in the back pocket. I have read that getting the chemo in early tends to give better extension of life so i will ask about that in 2 weeks.

Got to keep having the Prostap injections but stop the Dexamethazone and start Prednisalone.

I didn’t think to ask where my new lesions were or what my Testosterone is. But they want to see me every 2 weeks now for a while to make sure it’s all working ok so I’ll ask next time. I can just walk in to the department with the blood test form the day before and they’ll do it there and then which is handy. Just means another trip to the hospital which although its only 20 mins drive away its taking over 40 mins to find a parking space. 

Never thought id get to this stage as it feels like nearing the end of the road. I do feel guilty feeling like that as i know all the guys on here that are on Abi and Enza and they are so strong and i wish i was like that …..and i know i have to stay strong for my wife and the boys.

Going to be interesting at counselling tomorrow! Last time i went I said I don’t want to talk about my childhood anymore and she said ok but why. I said I don’t feel any emotions about what happened to me (i was emotionally repressed) . So i carried on talking and she stopped me and said she can see that i still blame myself for what happened. I just broke down. So plenty to be getting on with … 40 minutes isn’t long enough 🀦‍♀️. Sorry if that upsets anyone ! Please tell me if I should delete that but it just explains me a little bit and the machinations going on in my little brain as well as the damned PCa   πŸ™ƒπŸ™„

So, onwards and upwards….

Ange, so pleased you and Keith had a lovely time in Kefalonia, and hopefully also completely forgot about PCa for a while. It’s a beautiful island. We went there when our oldest got his GCSE results by telephone on the beach and we lost our youngest in Lassi for an hour one evening .. A good few years ago now 😜

Best of luck for the next appointment on Tuesday, i’ll cross everything. He should be pleased with himself at 2 years without HT , keep it up. Reading about other peoples PCa journeys does really help and does give inspiration to others.

Been rambling long enough,  sat here looking at the garden and the grass is saying ‘i need a haircut’ but my tummy says i need food and i have badminton this afternoon. 

Take care everyone, and be kind to yourself, 


Posted 28 Jun 2023 at 17:06
Yes, early chemo can extend life but abiraterone is better than early chemo. The only thing that you could have been offered that might be even better (according to the research) is docetaxel combined with daralutimide or apalutimide - but I think these might only be available on a trial
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 28 Jun 2023 at 17:13

Hi Lyn. Yes I expected Docetaxel as he’d already mentioned chemo but they were firm they want to hold it in reserve. 
I’m happy they chose Abi for me 😁and they’re keeping a close eye on me until they’re sure it’s the right course.


Posted 28 Jun 2023 at 18:19

Thank you Phil, very much appreciated.  I think you are much stronger than you realise, if you think about how you keep moving forward with your life, spending precious time with your family and having/planning super holiday experiences with your lovely wife.  You’ve certainly been keeping yourself physically fit too which takes a lot of motivation.  It’s reassuring to know they are keeping a close eye on how you progress with abiraterone.  I will keep everything crossed that this treatment works well for you.  The counselling will be helpful to continue with I’m sure, as it will give you the opportunity of expressing your feelings.  Don’t be too hard on yourself Phil regarding childhood experiences it’s easy when we are an adult to think that we should have known what was right/wrong when we were children.  I have to keep reminding myself of this when I occasionally feel really guilty when I think back to my childhood experience.  I have to keep telling myself that it was not my fault too, but it has had and still does have a huge impact on my adult life.

Take care and be kind to yourself.


Posted 29 Jun 2023 at 11:15

Oh Ange, thank you for your lovely words , and I’m so, so sorry if i caused you to remember old wounds. It wasn’t my intention to cause any distress to anyone. That’s why i asked if maybe i should delete that bit…

Been to see my counsellor this morning and we talked about how i still blame myself , not just for that but for some other stuff while i was at school. I even messed it up with our first foster parents and they said they couldn’t look after us anymore but luckily our Aunt and Uncle volunteered and it was great there although we had to change schools. You tell yourself you were just a kid but you think about it with an adult mind.

You’re right that all those things have an impact on who we are now. I try to tell myself I’m a better person for having those things happen and to understand that life isn’t always a bed of roses….( actually that sounds quite painful πŸ˜‚)

Yes, be kind to yourself , good mantra, not so easy to do though is it. It’s funny i have talked about ‘triggers’ with my old schools friends and they just say ‘snowflake’ … They just don’t understand.

Anyway, had my first Abiraterone and Prenisone today . So fingers crossed no side effects πŸ™‚.Feeling surprisingly ok with it all. Hoping i continue to feel confident this treatment will work for a good while yet.

Have to get used to taking the Abi an hour before breakfast . Seems like forever πŸ˜†

I was talking to the MacMillan Manager today before counselling and she said they have a nutritionist available so i might book something up. She said that the cancer beating foods are all very good but a sometimes it needs a bigger overview of your needs.

Anyways, many thanks again Ange,

Take care, 



Posted 30 Jun 2023 at 14:41

Hi Phil,

Pleased to hear you’re feeling confident about your new treatment regime, I sincerely hope this works well for a long long time.

How wonderful of your Aunt and Uncle to take you under their wing and protect you when you were young and needed to be loved and cared for.  You really haven’t caused me any distress at all, honestly.  I just hope your counselling will help you to move forward and you being able to talk about how you feel can only help you.

Keep fighting Phil and look forward to the arrival of your first Grandchild.  Keith and I have four Grandchildren and they keep us on our toes and bring us great joy and give so much love.

All the best,


Posted 30 Jun 2023 at 16:44

Hi Ange,

I’m so pleased I didn’t upset you , or anyone else  πŸ˜ͺ

I suppose i feel confident because i trust my consultant, and grateful to have been put onto the Abi. I know how expensive it is…… Not sure how it compares with Enza or Apalutamide though.

Counselling is really helping and this new lady has some other ideas which is interesting and helpful. Very grateful the NHS are paying… 

My Aunt and Uncle were magic. She was 23 and i was 13 and i think i had a bit of a crush on her πŸ˜‚. We really liked it there, and the school, but after 18 months we had to go back home and back to the old school as our parents came back. I missed choosing my options for CSEs and ended up not doing well. Luckily i was allowed to sit some of them again as GCEs at college as i had spare time on my engineering course and got all A’s 😁

Can’t believe we are going to be grandparents soon, and can’t believe our oldest is going to be a Dad 😳 He is going to take it so seriously…..

Take care, its a tough old world out there 


Posted 03 Jul 2023 at 18:14

Hi Phil, 

You posts are honest and reflective, being able to write about your past and life may help you, and also might help others along the road. Childhood for some of us can be a mixed bag of may experiences, the time with your aunt and uncle sounds good, I hope it gave you some resilience  for the future.

Having PCa and the HT seems to have raised memories for you, it has done so for David as well in some ways, he says it's a mixture of getting older, remembering both good and less good things. He was offered counselling by our GP and he had some art therapy, but it just didn't work for him, as a musician he will go off and play or work in his music room as his therapy. I don't think the paper therapist was able to connect with him. 

David is doing well, his PSA is still < 0.1, he takes a number of  supplements and he also sees a private oncologist. If you are interested in knowing more let me know. As you know David is also Gleason 9 Tb3 with lymph node mets, but the drug regime he is on is quite different from the NHS although he is on Prosap HT as well. We decided to do a bit of hunting around when he was diagnosed stage 4 as he feels he still has a lot of living to do, and life to enjoy. 

It's his birthday this weekend, he's 73, not sure what we will do, but we will enjoy it.

Please feel free to ask us about David's treatment regime of you are interested, but of course it's your choice. 

Just be aware its not too pricey, less than a trip on a paddle steamer ;-) 

I hope you don't mind me mentioning it, I've read your posts out to David and he was keen for me to make you aware of his treatments plans. 

Take care, keep posting your  feelings, and sharing what you feel helps.







Posted 04 Jul 2023 at 11:11

Hi Leila, thank you for your kind words. I sometimes feel i am being a bit self indulgent putting some stuff on here but hearing that it may help someone get through something similar makes me feel better about sharing. It’s a big step sharing that you’ve been abused but it’s like a massive weight off your shoulders. It’s too big a step for some people to do, and also most people are not comfortable hearing it. It’s not about sympathy , its more about maybe understanding why we are different. 

For me , the counselling has been so good, helping me try to understand my feelings and why i did things in my childhood and not to blame myself. To be honest i find it fascinating to hear about the mind works. I told my counsellor that i had to write down about my childhood to try to get it in chronological order as its as all over the place. She said during trauma they brain struggles to put the memories in the right place and they get jumbled up. We’ll i would never have guessed that, so interesting.

It must be amazing to be able to make music. I am so jealous. Can imagine how therapeutic it must be. Listening to me sing its probably a good idea I didn’t get into making music …….

David is in a similar situation to me with lymph node involvement and it’s really great that the Prostap is holding it back, long may that continue. My consultant did say i have more lesions but she didn’t tell me where and I didn’t ask. I will ask next Tuesday when i go again if I’m brave enough …

I would be very interested to hear about Davids treatment. Anything that may help. Willing to try anything. 

I hope David has a really great birthday and you find something special to do. I’m not far behind at 68 . We still celebrate the day we met, and i can still remember it like yesterday, me looking across at her and having that OMG moment, crazy i know.  Just having a meal out this year in our favourite restaurant with our youngest and his wife.

Please feel free to read my posts out to David. 

Take care 


Posted 04 Jul 2023 at 12:17
Hi Phil, I’ll send you a private message, as David has a long list. πŸ˜‰
Posted 04 Jul 2023 at 12:18

Thank you Leila πŸ‘

Posted 04 Jul 2023 at 21:24

Originally Posted by: Online Community Member
To be honest I find it fascinating to hear about the mind works. I told my counsellor that i had to write down about my childhood to try to get it in chronological order as its as all over the place. She said during trauma they brain struggles to put the memories in the right place and they get jumbled up. We’ll i would never have guessed that, so interesting.

Apols first to anyone who doesn't want to read about abuse - don't go any further.

Goalhanger, there are a few members here who have made reference to their childhood experiences of trauma - I think for some children who have been sexually abused, anything below the waist is blocked off emotionally as much as possible so a prostate cancer diagnosis forces it out of the box simply because of where the prostate is situated. The DRE during the diagnostic process doesn't help. And statistically, almost 1 in 20 children experience CSA so not surprising that there will be active members on a forum (about any topic) who share that history of trauma. You should not apologise about posting - if people feel uncomfortable, they will click on.

Re the jumbling up - imagine that the brain has a bookshelf in it or filing cabinets or a series of storage boxes. Normally, we have an experience (going on holiday, watching a film, reading the news) and then we file it on the bookshelf or in the box. The next time we have a similar situation, we scan our bookshelf "now, what do I know about this situation? Ah! I saw another film by the same director and enjoyed it." That helps us to decide whether the new situation is safe / familiar / likely to be fun or unsafe / a bit scary / something we don't want to do. When something happens, we deal with it and then say things like "I needed to close the lid on that" or "I am glad to have that sorted" which is a description of filing it away on the bookshelf or in the box. When a child experiences trauma, they can't always make sense of or rationalise it so it remains unresolved and can't be put on the bookshelf or filed away. Instead of a nice neat filing system, the brain is filled with boulders of unresolved stuff so the now grown adult can't find memories in the places where they expected them to be ... timelines don't make sense, or memories of who was there and what happened next are unclear. It is a known phenomenon and there is specific guidance for professionals now that when a child is telling about harm or neglect, a lack of consistency or inability to give details does not mean it didn't happen. We have moved on a lot in the last few years!         

Edited by member 04 Jul 2023 at 21:25  | Reason: Not specified

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

Posted 05 Jul 2023 at 12:49

Thank you Lyn for your kind words. I actually feel I can walk a little taller now 😊

The information about memory is fascinating and rings so true with me.

I can barely remember any boy friends during my school years , they are just ‘ghosts’ . I recall the incidents but not who I was with. But I remember all the girl friends 🀷🏼‍♂️… 

It’s so good to understand more of how you think … 

I am still kinda processing what you’ve said. 

Thank you so much


Posted 05 Jul 2023 at 13:57

The same bookshelf / filing cabinet idea applies to some people when they are diagnosed with cancer, including men who find out they have PCa. We often see comments here about how hard it is to remember afterwards the derails of what the urologist said. It's because the patient hasn't been able to make sense of it, resolve it and then file it.

My husband, on the other hand, is able to put vad news in a box and then nail the lid down - this allows him to forget it ever happened and he is sometimes amazed when I tell him something about his diagnosis or treatment and he genuinely has no recollection at all! 

Edited by member 05 Jul 2023 at 13:59  | Reason: Not specified

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

Posted 05 Jul 2023 at 14:03

Lyn, I understand the box and lid thing. I did that from childhood right up till recently . All buried and hidden but the diagnosis plus Hormone Therapy flipped the damned lid off 🀷🏼‍♂️


Posted 12 Jul 2023 at 16:45

Ok so very quick update , as I’m not feeling very talkative today ☹️

Saw my consultant yesterday and my PSA has gone up to 9.3 now , from 8. something 2 weeks ago. My consultant isn’t worried , yet, as I’d only been on the Abi + Predisolone for 14 days. She’s said keep going with current treatment. Back to hospital in 2 weeks time and another blood test. 
Still forgot to ask about my new lesions… 🀷🏼‍♂️. 

So feeling a down at the moment. Can’t stop thinking about what’s next . Don’t worry I’ll be back to my chatterbox self soon enough. 

Take care y’all… 


Posted 12 Jul 2023 at 17:11
Showing great strength Phil. You may feel like a mouse inside but you’re a regular lion. Keep on talking as much as you want on or off the forum. You got this and we all got you ok. Best wishes mate πŸ’ͺ
Forum Jump  
©2024 Prostate Cancer UK