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Why can’t they treat my Lymph node PCa

User
Posted 04 Mar 2024 at 11:47

Originally Posted by: Online Community Member

I'm with you Phil!

of all the things I should be worrying about, I mostly worry about who my wife will end up living her remaining 30 years with.

Sad.

 

It is funny really as we wont even be here to worry. Just gotta hope we carry on for a few more years yet 😊

Before i do go I’ll make sure my boys are going to look after the wife and make sure she’s ok although only one of them lives here in the UK the other on lives in Jersey. My daughter in law in the UK is magic and i know she’ll always be there for my wife.

It is an odd feeling as i will probably go before my Mother in law as she is only 18 years older than me  …. My dad was a B*stard to me all my life but he managed to get to 94 which i must admit to feeling is a bit unfair …. 🙄

Anyway just waiting till Thursday for my first Degarelix injections and hoping it will give my system a boost and get the Abi working for a living !

Also having just moved back to Mirtazapin i am feeling much brighter and sleeping better. I also seem to have much more energy although my Consultant changed the Steroid to Dexamethazone because of my sleeping/energy levels.

Take care everyone,

Phil

Edited by member 04 Mar 2024 at 11:51  | Reason: M

User
Posted 07 Mar 2024 at 15:01

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

User
Posted 07 Mar 2024 at 16:23

It’s great to hear you sound more positive Phil.  Keith and I are praying for you.  Keep moving forward, you’ve got this!!

Ange x

User
Posted 07 Mar 2024 at 16:54

Originally Posted by: Online Community Member

It’s great to hear you sound more positive Phil.  Keith and I are praying for you.  Keep moving forward, you’ve got this!!

Ange x

So many things we still want to do yet ….

I must say the injection sites are actually quite painful now. May have to take a painkiller. Never had that with the Zoladex. 

Phil

User
Posted 21 Mar 2024 at 14:51

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

User
Posted 25 Mar 2024 at 13:32

Hi chaps. Well got my Degarelix letter sorted finally so they sent the prescription to my chemist (where my missus works) so got that ready 👍.

Then I got a call in response to my email regarding my appointment which was due this week but not heard anything. The nurse said go for the blood test and they’ll sort the appointment. So blood test Friday then another call today to say my appointment is this Thursday . So all sorted in the end. Lucky my Oncology dept will take walk ins if needed. 
Also had to ask then to arrange more Abi and Dexamethasone as I run out Thursday. 
So as always a bit anxious and really hoping my PSA has stopped rising now…. Gotta be positive… 

So to stop myself worrying I went out and cleaned the car for 3 hours.  As its white it needed the toothbrush treatment along all the creases, joints etc as it was green mouldy. It’s not a mouldy old wreck but I’ve not don’t it for months ….! 

Take care buddies. 

Phil

User
Posted 25 Mar 2024 at 13:36

Good news Phil, and good luck for the blood test & appointment 👍

User
Posted 25 Mar 2024 at 13:36

Stay positive Phil. 

I'll drop my car round later 👍🏼

Kev.

User
Posted 25 Mar 2024 at 13:51

Thanks guys. 
My neighbour already beat you to it … she said she’ll bring hers over later . I looked at our now huge driveway and said there’s no room… 

I was gonna start my bike yesterday but battery was flat so that’s been on charge overnight so might pop it back and give it a go. It’s an old ‘73 bike so no electric start … so see how I do … ! 

Cheers

Phil

User
Posted 25 Mar 2024 at 18:59

Just dropping my car round in the morning. 

User
Posted 25 Mar 2024 at 19:02

Originally Posted by: Online Community Member

Just dropping my car round in the morning. 

 

Oh no , what have I started… I’ve run out of car shampoo.. 🤷‍♂️

User
Posted 25 Mar 2024 at 22:24

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😊

 

User
Posted 26 Mar 2024 at 09:27

Decho, you lucky man 🤣..

My youngest is like that and when him and his now wife lived with us he always helped me with the cars. He has a Lotus Elise so it was always immaculate.

Ive only got the one bucket and I know I should buy the one with the grit trap in it 😁.

Remember back in the late ‘70s early 80s people used to over polish their cars and go through the paint. 

The first time I took my missus out to meet with my friends the Pub was having a 1600E meeting. She was 15 and very shy and still remembers that evening. 🥰 

Phil

User
Posted 28 Mar 2024 at 11:56

So latest update from this morning. 
PSA up to 8 from 6 , T is slightly down from 1.4 to 1.3. He says he’s not so worried about the PSA but wants the T down. Give it another 4 weeks on the Degarelix and we’ll see.

Also wants another CT and bone scan in 2 weeks. 

Mentioned that we’ll give this a go then if we need to he wants me to have the Orchidectomy. No choice really, if I want to give myself a few more years. 

Do feel a little bit down but was expecting it really. Just kinda wears you down sometimes.

Take Care guys, good luck to you all on whatever treatment plan. 

Phil

Edited by member 28 Mar 2024 at 11:57  | Reason: Not specified

User
Posted 28 Mar 2024 at 12:12

Originally Posted by: Online Community Member
Do feel a little bit down but was expecting it really. Just kinda wears you down sometimes.

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.

All the best mate.

 

Edited by member 28 Mar 2024 at 12:13  | Reason: Typo

User
Posted 28 Mar 2024 at 15:23

Hi Phil

It's normal to be down beat I've been there many a time,but there's always other options,be open minded and positive.

Sending good vibes.....Phil 

User
Posted 28 Mar 2024 at 15:24

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

 

 

User
Posted 28 Mar 2024 at 17:39
Mate you’re a Trojan. Keep strong and enjoy those hols. I know how hard it all is.

An Orchidectomy ? They’d struggle to find mine I reckon 😆😆. Chin up and strength friend x

User
Posted 28 Mar 2024 at 18:08

Sorry to hear that Phil. 

Hope you can stay positive. 

Kev.

User
Posted 02 Apr 2024 at 09:58

Thank you guys for the lovely thoughts, really appreciate it. Especially as you lot really understand what it’s like. People outside of this special circle of friends just don’t get it. If I say my latest PSA is so and so then I get a reply that they’re suffering too with their lumbago or some other ‘minor’ ailment. 

I suppose whatever each of us have it is the worst thing to deal with. That’s human nature isn’t it. 

So had my CT scan now and just waiting for the bone scan on 19th. Funny thing is part of me just wants the Orchidectomy now to get it done and see if it helps. 

I’m 69 tomorrow so no spring chicken. And I realise I’ve been very lucky in my life, especially with my lovely wife and 2 boys. Many people don’t have that and it makes me feel a little guilty when I see children suffering especially as I’m particularly sensitive to emotions with the old HT… 🤷‍♂️.

Anyways, hope you lot are doing ok , Summer is coming and the warmer weather, yippee. Can get some planting done soon in the new flower beds back and front. 👍

Out to Jersey again Friday. Shame easyJet don’t have air miles , we’d have loads 🤣. Hopefully catch up with KevT at Luton. 

Cheers

Phil

 
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