Why can’t they treat my Lymph node PCa

Morning guys, saw my consultant yesterday and my PSA has dropped to 7 from 9.3 2 weeks ago. So well pleased, was prepared for the worst. I nearly burst into tears… in my head I was even thinking about my funeral 🤦‍♀️
Still keeping me on 2 weekly visits and tests for a while yet as Testosterone is still not as low as it should be. So hoping that will drop soon. Only been on the Abi 26 days.

My other readings are all ok so far, like liver and BP so that’s good. Just the random fatigue being the only side effect that I notice. 

Take care peeps
Phil

I know stage 1 clinical trials are never ideal but things are progressing quickly and this Sexily named! CB307 does sound interesting:

https://findastudy.uclh.nhs.uk/#/trial/61aa4c4f28192a29cf4f4186

Pro-merit clinical trial is recruiting across the UK

https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation

It may be worth asking

Thank you Peter, I will have a look 👍.

Leila, I’ve just ordered the book ‘ healthy eating. The Prostate care cookbook’ and I’ll take a look at the book you mention. So pleased to hear David’s PSA has gone down. The diet can only help.

Ange, thank you for your kind words. I am going to have so many questions for my consultant this time. I’m not going to sit back and let it take me…

Off out to garage now to work on my old motorbike for a bit then fitting some skirting board to new summerhouse. Got to keep busy , you don’t realise when your young how much you have to savour each and every day. Went out last night to see ‘Anything for love’ the Meatloaf show - really good and brought back memories of us seeing him live in a theatre in Ipswich back in the early ‘80s….. bloody hell how time flies…….

Take care everybody, and in the words of the old Prince Buster song ‘Enjoy yourself, it’s later than you think’

Phil

We met at 14 messed about for a while as mates stared going out when 15 …oops pregnant at 16 our first born when 17. Parents would not accept us and refused wedding so married at 18 …….. that was 43 years ago.

recently diagnosed and waiting for biopsy and scan results due Friday my wife is positive and supportive however as I read this forum  there is lots and lots of talk about sex and how it could effect the relationship .

don’t misunderstand me as a man it is a big deal for me and I am horrified by the lack of erections the possibility of a reduction in size etc. But my wife has not had a lot of fun with her menopause and the huge effect it has had on her libido and to be blunt vaginal dryness and what she describes as a shrinking space….

however she understands that it, sex, has been great and understands it is important to me and her but she gets little from it now. Her words my clit does not work any more 😢

I guess my point is that the forum does not seem to grasp the partnership and how they will deal with it….maybe your darling will be relieved 😱

we are both 61 and I really really want her and I am not ready to give up on that but I want to stay alive  and it is a real dilemma that sex leads you to a bad life decision

thoughts?

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

Latest update: PSA same as last time at 4 and strangely Testosterone is back to 1.0. 
All other bloods are ok so staying on the 1 prednisone tablet. 
Although we decided not to find out where my cancer had spread to other than the lymph nodes I’m pretty sure now it’s to my bones as my consultant has booked me for a bone scan in 2 weeks. I do have some pain started in my left hip. I’ll find out if it’s PCa related or not after the scan.
Was a bit tearful before the call but overall I think the Citilapram is working better than the Mirtazapine even though I’m still tapering on/off. 

Been out in Jersey every month now and back out for Christmas and our son, his wife and our grandson are flying back with us for a few days in the U.K.

We had a few days in Spain in November visiting friends and it was so lovely and warm. Made me feel so much better sitting in 24deg sun.  And needed a day in France stocking up on wine. It is still so cheap there. The wine supermarket even pay for your ferry ticket plus you get the tax back 😁. And it’s a nice day out 👍

Hope everyone is doing ok and you all have  a brilliant Christmas and New Year.

Take care,

Phil

At the ED appointment, let's hope it'll be more a case of.... What a willy!.... 😁

Edited by member 09 Jan 2024 at 18:43  | Reason: Not specified

That’s not so good Phil, the op you’re talking about I think is more common in India, as the medication is too expensive for some men there, but maybe it can be done here. 
I'm keeping my fingers crossed it’s a blip. Maybe think about some of the supplements and stuff we talked about, just a thought. It’s helped David immensely. 
Take care.

Leila.

Hi Adrian. I started the changeover from Citalopram back to Mirtazapine 2 nights ago. The difference is amazing. Just on 10mg Cit’ and 15mg Mirtazapine and went out like a light… 🙂 My first solid nights sleep for 2 months… 

Just have to ween off Citalopram slowly now . I’ve done it before years ago and all I got was ‘brain zaps’ like an electric shock . 

Blood test next week then see Consultant again week after so obviously gonna be a bit anxious about that. 😬… 

Take care 

Phil

Hi Phil,

Enjoy your evening, we shared a decent bottle of red last night, and had an evening  with friends earlier in the week. This PCa isn’t easy for you lovely lads, you have my utmost respect. Sometimes in the small wee hours I think about the future, then remind myself to value each day. I am not a good sleeper, so I have a few wee small hours to think, not all negative thankfully.
Managing emotions and feelings is such a complex process, and has so many layers to deal with, and harder for some than others. 

Take care Phil, you are in our thoughts . 

I’m really sorry to hear that Phil. It’s easy to get a bit blasé about PCa when surrounded by other people with the same thing, but it’s actually s***. Update us when you’re ready pal.

Ian.

Thank you for your messages. It really helps knowing you guys understand the mental side of this damn disease. 

So the update. PSA gone up by just over 1 to about 6 I think. T is up too but he didn’t even tell me. He said he’s not Interested in numbers anymore as long as I feel ok. Which I do. 

So he’s changing my Zoladex to Degarelix. First injection next week and he said it will be a super boost , with 3 injections in the stomache. Next appointment 4 weeks. 

He also said if this doesn’t work he’s suggesting Orchidectomy. Which I was gonna ask about anyway. It’s a big mental issue isn’t - bloody hell I'm still digesting it… 

So we both had a little cry in the car and had to come home to phone the boys. That was hard. 

But I mustn’t let this get to me or it ruins the rest of your life. 

It has made me think harder about when I go and how my lovely missus will be on her own. I can’t think about her meeting anyone although i obviously want her to be happy. She’s 60 so could have another 30 years with someone. I do find that hard as I’m sure you all do because we’ve all thought about going into our dotage together and that’s not gonna happen now - oops a few more tears…

Just had a coffee and 2 kitkats 🤣 because I can … !  

Take care everyone, ‘Enjoy yourselves, it’s later than you think’ 🎶 

Phil

Edited by member 28 Feb 2024 at 17:06  | Reason: Not specified

Best wishes,

Chris

Hi Claret , it does appear that your post was removed 🤷🏼‍♂️. No idea why …. ?

But I remember what you said and I’ll investigate the Lu-177 and the link you sent , thank you .

Phil

Hi,  Replying to your request for information.  I read a few places but there's a YouTube channel called The Prostate Cancer Research Institute which has a lot of interesting, basic and short videos.  It's American.  They don't like names on here, Dr S....z is the one I prefer to view, he's a prostate focussed oncologist.  Here's a link  https://youtube.com/c/ThePCRI

What a difference another day can make. So glad you feel better about moving forward. Look forward to seeing a picture of your bike soon!! Ange x

Wow, looks like you’ve made a fantastic job of your motorbike Phil.  Keith is really envious!!  He had motorbikes in his teens/twenties and would love to relive the thrill again.

Its so good to have an interesting project/hobby to keep you focused.  These have certainly helped to keep Keith going since he was diagnosed in September 2019.  Feeling nervous as it’s his second PSA test coming up since finishing HT.  I don’t think that worry will ever go!!

Hope you’re doing okay since your Consultant has added the Bicalutimide to boost the Zoladex.

Look after yourself and enjoy great family times.

Ange x

Hi Phil, 

The bike is marvellous, and it does provide time away from worrying about PCa. Keep going Young man. David is is doing the Care Oncology Protocol might be worth a look. Keep going, lots of bikes need attention. 
Leila x

Hi Phil, 

This bl%#dy disease will definitely get more than a run for its money. We ain’t giving it a chance. What a wonderful story you met the love of your life at 15, how special is that. We met in 2003 sadly a bit later in life but I know I’ve met the right one. He’s a keeper, we are delightfully happy. We’d both been married before, and this was unexpected for me, as I wasn’t looking to meet anyone, I was happy alone.
Dave’s PSA was < 0.1  we are delighted. The mixture if prostrap & the London clinic seem to be the right recipe for him. He’s careful with diet and stuff, but he feels good and we seem to be toddling along quite well. 

take care Phil, 

Leila. 

Best thing she ever did for me!!!

HRT stops the production of tostesterone more or less completely.

Menopause in women reduces the production of progesterone and oestrogen over time (but does not stop it). Tostesterone production in women is unaffected by the menopause, it does reduce as they get older (like men) but it is unaffected by menopause.

https://www.menopause.org/for-women/sexual-health-menopause-online/changes-at-midlife/changes-in-hormone-levels

Hi Phil, I would think it was helpful for you to write about your childhood experiences, etc., even if you deleted what you had written.  Life can be so cruel in so many ways for so many people.  I always say to myself when I have a bad day forget today and start again as ‘tomorrow is another day’ and I can usually see things in a different light.  You do have strength Phil, just look at how you have coped with what life has thrown at you.

I hope today has been a better day for you.  The camaraderie on this forum is amazing - just knowing we are all there for each other.

Take care,

Ange x

Cheers Chris. Didn’t know Abi wasn’t authorised yet. Fingers crossed I won’t need it yet but not holding my hopes up. 
This has really hit me and just started back at the gym and I find myself thinking why am I bothering …. But then I give myself a good talking to as it’s not just about me. 

Phil

My councelling has run out also at every avenue and it’s just too hard to start with someone new with a long previous history. Good luck though friend 👍

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

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.

Leila 

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

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

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

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 

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

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

Leila 

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

Thanks Goalhanger,

Yes, you can put away the funeral plan for a while yet.  So far, so good.  Long may it continue.

Best wishes,

JedSee.

Great news Phil, just what you needed to hear.   Take care, Ange x

A reduction in PSA!!! 

Absolutely brill.

Congratulations good news long May it continue 

ann

My fortnightly update : PSA now gone down to 6.1 ( from 7, 2 weeks ago and 9 2 weeks before) so 9 to 6 in 4 weeks not too bad. Feeling very relieved as I was worried the last drop was going to be a blip. 
Testosterone also dropping now , so the Abi definitely doing something. Blood pressure perfect and no other issues to worry about. Still keeping me on 2 weekly checks for a while though. Just a pain going to hospital for blood test, then back again for consultation and then again to pick up more tablets, every 2 weeks. But I’m not complaining, really 😁. Just hoping that things progress so I can get back to 3 monthly checks as every 2 weeks can be quite stressful. 

I did ask about my new lesions , and said I wasn’t sure I should know or need to. She said I don’t need to know , just that the treatment is working. I suppose she’s right really. I’d only worry if it was now in my bones or even elsewhere.

On the grandson front we are still waiting. Due date tomorrow. I just phoned them and they are on the beach having a swim. Hopefully he will pop out this weekend and we can get some flights sorted and be out there Sunday or Monday to see the new addition to our family. Keeping fingers crossed they add Jersey back into Southend airport soon. It’s only 20 mins away whereas Luton is a s*** hole airport and takes over a hour by car (then of course there’s the exorbitant parking fees).

Anyway it looks like the weathers taking a turn for the better now so gotta enjoy it while we can. 24.5deg in my car yesterday…. ☀️ 

Hope everyone is ok out there ?

Take care all of you. 
Phil

Edited by member 10 Aug 2023 at 17:27  | Reason: Added new lesion information.

Brilliant news Phil.  Hope it won’t be too long before you’re on 3 monthly checks.  The arrival of your Grandson will be the ‘Icing on the cake’.  Enjoy some precious time with your family xx

So here we are again. Latest 2 weekly consultation this morning. Knew it wasn’t great news when i saw my main man coming into the room. PSA still at 6 , so not so good. Testosterone is just above 1 and he said he’d like it below 1 . He thought i was on Degarelix so i corrected him that i was on Prostap monthly. Wonder if changing would make any difference ? I seem to doubt it.

Still not feeling any side effects of the Aberitone so that’s good. Still managing 2 hard 2 hour gym sessions a week plus badminton. I do push too hard but i like that feeling afterwards so as long as its not hurting me ill keep pushing.

He has reduced the Prednisolone to 1 tablet of 5mg instead of 2 . Not sure why that is ? Maybe due to my lack of side effects. Keeping me on 2 weekly visits although he was going to go to a month but i will need a new prescription before then so he said come back in 2 weeks. Hoping to see a reduction in the PSA then and moving onto 1 monthly visits. 

So, all in all not feeling so great . Trying not to think of the reasons for the static PSA. Just hoping my PCa hasn’t become castrate resistant. Also wondering what they will do if it stays static next time and what that means. Will they say stick on the Abi, or will they want to try Enza. Also wondering if it’s ok to have static PSA at 6 ? Does it mean the PCa is still growing but very slowly?

Counselling still interesting … She asked me last time if she had 3 pills but i could only have one which would I choose. First pill would stop me thinking of the past, second one to stop worrying about the future, and the third to make me like myself more. I chose the third straight away, and promptly broke down again.. bloody hell she knows the triggers all right. 

Grandson still not popped out , so still waiting to book flights to see him. Got to be soon as she is 2 weeks overdue tomorrow. 

Gonna have a coffee and a sneaky bit of chocolate bar. I think I’m owed that !

Hope every one is doing ok? 

Take care all,

Phil

Hi Phil,

Please don’t be too hard on yourself!!  All each of us can do is our best and I know from our conversations on the forum you have certainly done that.  You come across as such a lovely family man and the joy you will feel when you meet and hold your first Grandchild will be absolutely amazing, take it all in Phil and enjoy those precious moments with the love of your family.  I used to worry about what everyone thought about me and I was so easily intimidated by all but now at the age of 71 I cherish each day with my family and friends and I know each day going forward matters more than what’s past and I focus on all the happy memories I have.

Keep doing what you’re doing and stay strong.  

Love to you and your family.

Angex

How wonderful, congratulations!

Congratulations to you and your family Phil on the birth of your beautiful Grandson, wonderful news.  I’m keeping everything crossed for you for tomorrow’s results.

Take care,

Angex 

Hi guys, just checkin’ in. Just had the first of my next round of Zoladex implants. Don’t understand why my consultant thinks it’ll work now as it didn’t earlier in the year. Got my consultant letter yesterday and he’s written he’s not happy with my T which is still at 1.3 . Feeling a bit down today about it at the moment.
Booked up our next visit to Jersey in a couple of weeks so that’ll cheer me up. And off to see ABBA voyage next weekend with a night in the Tower ( the hotel not the prison 🤣).

Hope you’re all doing well ? 
Phil

Hi Guys. Having a bit of a wobble thinking of my next blood test and consultant meeting next week …. 😬
So looking forward to going back to 3 monthly checks as the 2 weekly and even 1 monthly is so hard to relax in between although I do understand they want to be sure the Abi is working and no nasty side effects… 

Trying to keep busy , went to the gym Tuesday and still aching from that. But missed my badminton yesterday as me and the missus went to do some Xmas shopping in Chelmsford and out with friends last night to a restaurant we’d not been to and it was lovely 👍. 

Shame the weathers been a bit turbulent… Family in Jersey all ok after a bit of a battering last night. There’s a bit of food shortage over there as boats couldn’t sail and they can’t get Formula milk for the baby so hoping they get a delivery today. 

Hope everyone is ok out there in the big bad world? 

Phil

Edited by member 02 Nov 2023 at 12:50  | Reason: Not specified

Hi Phil, 

David had this scan, it was time consuming and we had to hang about in some draughty shopping centre rather then the hospitality of the hospital. He was there about an hour or so, he said it was manageable, the staff were great. He didn’t go into great details, and he got the results quite quickly. 
So pleased you are enjoying your grandchild, they are such gift, squeeze every day of fun with your family.

Leila 

Well that’s the CT scan out of the way. The aniseed tasting liquid wasn’t too bad. But took the nurse 5 attempts in different places to get the cannula in. So got plasters all over the place. 
Last time I didn’t really notice the contrast dye going in so much, but this time it was very weird. It felt like loads was going in and I got really hot for a few seconds, which is when you think you’ve wet yourself. 
My back is still really painful and my GP has put me on 30mg Co-codamol which is pretty powerful. It’s working but doesn’t last so I have a period where I’m using Ibuprofen to dumb it down. 
Just hoping it’s Sciatica as my GP thinks and not PCa spread.

Take care everyone 

Phil

Thank you Leila. Yes looking forward to getting back into a routine. Even eating times were all messed up which affected when I could take my Abi. Christmas Day I had to take it at 6pm instead of my normal 8am.. 
Sorry to hear you had to cancel your plans. So annoying especially if you’re not feeling well.

Hope you are back on form now? 

Let’s hope 2024 brings some good things 👍

Take care

Phil

Don't beat yourself up mate. Its perfectly understandable for you to be anxious. Very best of luck to you.

Adrian.

Hi Phil, 

Thinking about you, the stress times are hard going aren’t they. Let us know how you get on.

Leila 

Stay strong Phil.  Good luck for Thursday, we’re all there for you.

Ange x

Hi guys I went to hospital today and told them I needed a blood test for my appointment Thursday… she looked at my form and said this is for July and it’s not for your consultant 🤦‍♀️… I looked again and realised it’s for ED clinic…. What a wally… 

The letters all look the same and it’s hard to tell what they are for… 

So, haven’t got my consultant appointment yet , gotta wait some more…

New Avatar is me and the missus on the paddle steamer last year. 

Hi Phil, 

David’s regime isn’t too painful honest guv 😉 I’ve sent a msg to your inbox.

Sent it just now. Leila 

Phil, it's bad enough feeling down, and its twice as bad, when you're feeling knackered.

I admire your resilience and hopefully the longer days and a bit of sunshine will help you feel brighter.

Adrian.

Edited by member 13 Feb 2024 at 13:17  | Reason: Typos again!

Thanks Adrian. I do feel better already 😁. 
In our position we have to do whatever we can to reduce anxiety. 
I just today had the conversation with my Mother-in-Law about the seriousness of my condition and the probable prognosis. She didn’t understand that my wife needs/will need her support. We both shed a few tears, but she understands more now. She kept saying she understood , but my Father-in-law was 94 when he died of Heart failure while suffering from PCa . I explained to her that her daughter is only 60 and living with the prospect of me dying fairly soon. It tears me apart to think of leaving her. 😥
My Brother-in-law also has PCa and is still on HT but hoping for curative. Fingers crossed 🤞 for him. 
So , chin up, get on with living. 
Out for a few beers with couple of mates tonight. Probably have one too many 🤦‍♀️🤣… 

Cheers

Phil

Edited by member 15 Feb 2024 at 16:13  | Reason: Not specified

Well chaps, my evening out didn’t exactly go to plan. We went to a micro brewery and last time both my mates were ill afterwards. But we went back anyway. 
After about 1 1/2 pints, 1 1/2 hours,  I started to get stomach cramps which were crippling and i told my mates I didn’t feel too good and could they phone my wife to get me. I then promptly passed out on the table. They ended up calling an ambulance which arrived same time as my wife . My wife decided to take me home and the ambulance guys were fine. 
I couldn’t walk and needed help to the car, got home and had a shower as I’d pooped myself 🤦‍♀️… Never ever done that before, so embarrassing!
I told my mates I didn’t want to die passed out on a table in a Pub…! 
Had a good nights sleep and feel ok today albeit a bit tired. 
Dont think it’s cancer related unless it the new Dexamethasone or the change in anti depressants… ? 
Was either fish I had for tea or the Dark beer I had (Black Bess) 🤷‍♂️
Was so looking forward to a night out with my mates. 
Maybe next time we’ll do lunch with coffee 🤣

Hope you’re all good

Phil

Adrian, I remember years ago, collapsing at our kitchen table. Out like a light, but it was down to too many bevvies. Embarrassingly it was the first time, I'd ever met the step-monster-in -law. Took months to live that one down.

That must’ve been soo embarrassing 🤣🤣 

I worked in Pubs from age 8 to 17 so never really got drunk as I’d seen it all. But I went on holiday with my mates once to Spain when we was youngsters. I got off with our Spanish dinner waitress and we’d all been out and got back to the hotel and I went and got a round of drinks on a tray. I was showing off but very smashed and I ended up letting the tray go about a foot above the table. So many hands came out to try to save their drinks 🤣🤣. Still makes me laugh now. Bacardi and coke - still can’t drink it now. 

Phil

Adrian, I can remember, the next day, being on the phone  to her for almost an hour. 

🤦‍♀️… I can imagine … ! 

My MiL is magic. Met her daughter when she was 15 and I was 24 but she never made me feel unwelcome. And we’re still married 45 years later. MiL is still around too 👍

Adrian,

Adrian,  I suspect that, being quite a bit older than my wife, makes dealing with this disease a little more difficult. 

Yes it’s definitely on my mind. Probably partly jealousy as she could have another 30 years with someone… I find that hard but want her to be happy .

Hi guys. Next consultation is only hours away now so been a bit fretful. It’s a 4pm appointment so will likely be late as well . 
Hoping for the miracle of a steadied or reduced PSA but not really expecting it. 
Not sure what we’ll do if it’s gone up again. Dont know how far it will have to go up before Docetaxel is brought into play. 
Just gotta wait now . Trying to keep busy and not think about it 😬… 

Take care chaps

Phil

I'm so sorry mate. I despise this damn disease.

Edited by member 27 Feb 2024 at 21:06  | Reason: Delete bad language.

Sorry to hear this Phil, but as Lyn says, let’s hope the injections stop it in its tracks. One step at a time mate. You may never need to consider Orchidectomy, so try not to overthink it now. Lots of people on here who can offer far better advice than me as I’ve not even started treatment yet, but I’m thinking of you pal 👍

Hi Phil,

Give the degaralix a go, as Lyn says it just might do the trick, as for the orchidectomy I can’t really comment, but it’s worth keeping on the back burner and discussed.

Now, more importantly 😉 young man, you have a lovely wife, and she will stand by you, and you her, that’s so special.

The other thing, how can you possibly eat kitkats with coffee, tea  dear boy, tea it’s the only thing  to have with chocolate. 
Coffee, on the rare occasion I drink it needs to be strong, black  and on its own. 

Lots of support on here Phil, we are rooting for you. 

Leila 

Thank you for your lovely messages. It really helps. 

As for the kitkat, well each to their own 🤣 but for me coffee and chocolate is right , tea with hot cross bun or biscuits ….. 😁

My coffee now is Decaf and black. How many ways can cafe staff not understand that. Why is black now Americano 🤷‍♂️. But when I then say Decaf Anericano they say do you want milk with that 🤦‍♀️… 

Does my head in …. 

Coffee anyone ? 
Phil

Ok so first Degarelix injections today. CNS nurse did it and was painless although both sites now a bit sore. Can handle that , just hoping it helps give the Abi a kickstart.

Is it too late to start praying now 🤦‍♀️… 

Last few weeks have noticed an increase in my appetite with a corresponding increase in girth. Gonna bring my exercise bike into the conservatory so I use it more. And gotta stop eating sh*t… and possibly reduce the wine intake 🤔. I cancelled my gym membership as I’d stopped going due to back issues and feeling a bit down in December/January. So also got some weights I’m gonna bring in too. 

See consultant in 3 weeks 😬

Take care peeps, 

Phil

So just copied this from my post in the Pub thread . Dont want to lose this thread 😬

So didn’t bother with a blood test in the end as was still not sure about consultation date. 
I did email the CNSs and they got back very quick and said no appointment has been booked so they’ll bring it up with my consultant in their meeting with him. 
She suggested I get the blood test done anyway as a walk in so going in Friday. 
Then booked my next Degarelix for 3rd April- my birthday 🤣. But GP says not received my consultant letter yet so can’t authorize getting the Degarelix. So back onto CNS and they were super quick and said they’d send me an email copy plus one to the GPs. So all sorted , or nearly, just my consultation date…  And then after that the bloody letter came in the post 🤦‍♀️

After our lovely day Tuesday I was on a bit of a downer yesterday 🤷‍♂️. I went to badminton but finished early as I just didn’t feel like it. I’d had words with the missus in the morning (very, very unusual!) and apparently I’ve been on a downer for a week or so. If I was at the Pub I’d have gone in the Public bar and sat in a corner nursing a pint of Guinness. 

So gotta get my mojo back , no good being like that. Gotta enjoy our days left..

So this morning booked flights for a wedding we have in the US in August . Got loads of Avios and a companion voucher so booked PE out ( daytime flight)(can’t do economy any more - id end up killing someone)  and Business Club Suite home as it’s a night flight. Club suite is soo much better than the old BA business. And only cost just over £600 for both of us. Result 👍 . Flying same flights as our boy and his missus as he’s Groomsman so that’ll be nice. We have a week out there so although we’ve done that area before we’ll try to see bits we’ve not seen. 

By the way I have noticed my appetite is insatiable at the moment and I’ve definitely developed the fat face. Presumably it’s the Dexamethazone . So need to start exercising some self control over my eating… straight after my next pack of fizzies ! And maybe another biscuit 🤦‍♀️

So, take care guys, I’m afraid Louis Armstrong was wrong when he sang ‘ we have all the time in the world’  it’s more like ‘ Enjoy yourself, it’s later than you think’ by Prince Buster - 🤣🤣

Phil

I’m lucky, my son is a fanatical car washer, has 3 different buckets, pressure washer and all the intricate tools required for a professional valet. My wife and I get ours done once a month…payback time😊

You're bound to feel low Phil. You're one of my cancer heroes on here. I truly admire your resilience and upbeat attitude. Does the scan interfere with your Jersey trip? If not concentrate on rocking that island.

I'm really no hero believe me. It’s just about surviving as best we can. I had a lot of sh*t as a child and I suppose it probably makes you more resilient that you might’ve been. Just keep bouncing back up like one of those Weebles… 🤣

When they phone re the scans I will have to tell them we are away in Jersey and the next weekend away in Exmoor. NOTHING interferes with our holidays… 👍

Phil

So true Ange, Phil you are so strong and it really helps us all get through this. Living every day to the full is the way to go and like you I find travelling gives me a reason to stay positive. Enjoy your trip to Jersey, I’ve only been home for 3 days, it’s wet and cold in Scotland and I can’t wait to get back out to Fuerteventura….out happy place😊

Need to lose some weight first though as I consumed too many mojitos last time🤣🤣🤣