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Why can’t they treat my Lymph node PCa

User
Posted 12 Jun 2024 at 20:21

Hi Phil

Good luck with the second cycle,I'm just getting over my 8th cycle last Wednesday,had a bad time last night and today a lot of stabbing pains from the tip of my toe to above my eye,think I've done to much the last few days,17miles on me bike 16000 steps round the zoo cutting the lawn trimming the hedge light weights in the garage!!!! I sometimes forget what I've got but when the pain kicks in it reminds me,brought us a static down Devon so moving stuff down there Friday could never have done it without the help of big C,look at the positives ah !

All the best Phil........Phil 

User
Posted 14 Jun 2024 at 11:00

Wow Phil you have been busy … 😳… Not surprised you were zonked out.

Ive was very tired yesterday and had a 4 1/2 hour sleep in the afternoon. Still slept ok last night though. And no leakage in the night at all which I am pleased about. Hope that continues.

Headache gone now too. 

Helping youngest move house today and already knackered. So sitting watching for a few minutes… They are moving themselves so should only have the one Luton van load as they’ve moved a load of stuff to a storage facility in preparation. Plus a load of stuff at ours. But still looks like all our cars are gonna be packed full… 

Might have a beer tonight watching Scotland. 

take care buddies

Phil

User
Posted 14 Jun 2024 at 13:25

Keep cracking on Phil. You're doing great mate. πŸ‘ 

Enjoy the football. 

Edited by member 14 Jun 2024 at 16:23  | Reason: Typo and additional text

User
Posted 14 Jun 2024 at 16:14

It’s great to hear how well you’re doing Phil.  Not only coping with the treatment but carrying on with everything else.  I noticed when Keith was having chemo he had days when he was knocked out but made up for it on his better days.  Amazing where this inner strength comes from.  Pleased to hear you’re coping with the cold cap, I don’t think Keith would’ve been happy to lose his full head of hair.  Keep going Phil, your amazing!!

Enjoy the match tonight and then England -v- Serbia on Sunday night too.

Ange x

User
Posted 17 Jun 2024 at 11:25

Hi chaps, just a mini update… still feeling the tiredness and having a little nap most days. It’s now 5 days since 2nd chemo and still feeling low in energy. Trying to push through it though. Been out this morning to get my hearing aid sorted , luckily only 10 mins away and it’s all done. Back home, chat with my neighbour who’s just getting over breast cancer. Coffee now then gonna cut the grass … 

This afternoon gotta wire wool my speaker cabinets so I can apply the Danish oil 😊…

Trying not to eat too much junk as I think my body thinks it’s tired due to lack of sugary foods. Gonna eat more fruit , especially bananas as they’re supposed to help. 

England game a bit worrying! 2nd half I felt was poor. Kane looked a bit lost… and I’m a Spurs supporter. 

Look after yourselves everyone 😎

Phil 

User
Posted 17 Jun 2024 at 13:36

Great to see your update Phil. And thanks for the reminder, I need to cut my grass too!

Still got my fingers crossed for you 🀞🏻

Keep going and keep us updated with your progress πŸ‘πŸ»

Good luck. 

Kev.

User
Posted 17 Jun 2024 at 15:32
Glad you ok Phil and bearing up. Thinking of you as ever. Your friend Chris πŸ’ͺπŸ’ͺ
User
Posted 18 Jun 2024 at 07:58

Hi 

2 down,keep it up and try not to overdo it trust me I know from experience.

Take care Phil 

User
Posted 18 Jun 2024 at 08:15

Originally Posted by: Online Community Member
Been out this morning to get my hearing aid sorted

Keep going Phil.

I said, "KEEP GOING PHIL"

😁

 

User
Posted 18 Jun 2024 at 08:18

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Been out this morning to get my hearing aid sorted

Keep going Phil.

I said, "KEEP GOING PHIL"

😁

 

 

🀣🀣

User
Posted 19 Jun 2024 at 16:18

Just another quick update. Had a telephone appointment booked with consultant yesterday for 4.30 but as they hadn’t phoned by 6.30 I kinda forgot. Anyways they phoned at 6.45. Said my PSA had gone up slightly, which I guessed it might after only 1 chemo session. ( blood test was the day before my 2nd one). 
But they’d like another CT scan so already got that booked in for Sunday morning at 9.45 …! 
We are at a party in Suffolk Saturday afternoon but driving home afterwards (2 hours drive) so hopefully I’ll be up bright and breezy. 
She asked how I was feeling and I mentioned the tiredness. Guess she wasn’t surprised. But I forgot to ask about flying in August. So I need to call my specialist nurses and ask if they could run it past my consultant.. I still want to go even if it means having the platelet injections if I can. 

Been keeping busy, another smooth down on the speaker cabinets and another layer of oil . Couple of jobs indoors then a new fancy glass dimmer switch for the conservatory lights came so fitted that. Works first time too 😊.. 

Suns out so I’m hoping a little tipple in the summerhouse later with the missus 😁. Even though I’m suspecting my leakage is partly down to alcohol… πŸ₯΄

Out with a couple of mates for a meal tomorrow evening so low alcohol beer for me as I’ll drive there. 

Look after yourselves guys, πŸ‘

Phil

User
Posted 19 Jun 2024 at 16:24

Have a great time with your pals Phil. Friends are so important.

User
Posted 02 Jul 2024 at 09:19

So blood test today for my Chemo tomorrow. I have a mild cold so hoping they’ll still do it. 
I’m still getting very tired needing the odd nap. It’s been like that the whole 3 weeks. Also breathless if I exert myself. I even woke in the night feeling I couldn’t breathe properly so I got up and slept in a chair downstairs for a couple of hours as my breathing was more comfortable like that. 
Will be asking about it at the Chemo. 

Swollen ankles don’t seem so bad now. Also need to try to diet a bit as barely any of my clothes fit anymore, and my face is now round as a balloon. Even my phone doesn’t recognise me anymore and I’m having to use passwords again… 

Cheers

Phil

User
Posted 02 Jul 2024 at 10:28

Ey up Phil.

I'm sorry that you're struggling a bit. Your energy has always amazed and it's a shame that the chemo has obviously sapped it. I know, from previous posts, that you take pride in your appearance and the bloating effect of your treatment will hit you harder.

I'm lazy, scruffy and overweight, infact the wife used to nickname me Onslow, (after Hyacinth Bucket's brother from Keeping up Appearances.) So if I ever need the same treatment, and suffer the same side effects, no-one will see a difference.😁

Good luck mate

 

 

Edited by member 02 Jul 2024 at 10:50  | Reason: Additional text

User
Posted 02 Jul 2024 at 10:54

Hi Adrian.
Yes just having a bit of a down day today. I suppose we all get them .

Yes I don’t like being scruffy and I feel so fat 🀦‍♀️… But I should get out and walk more. I see lots of guys on the chemo are still out on bikes etc and that’s brilliant. Not sure I’d get very far at the moment 🀣

I remember Onslow , what a character and a classic TV show. 

I admire people who can be themselves and don’t care what others think. I was always trying to be the smartest kid at school. Probably because I lacked confidence in myself. 🀷‍♂️. 

Hoping you never need to use the chemo πŸ‘

Take care 

Phil

User
Posted 02 Jul 2024 at 21:16

Hi both 

No pain no gain Phil,try and keep moving but in moderation,9th chemo done for me 1 more to go,sorry to be a sticky in the mud but guess what onslows actor passed with?Goggle it

Regards Phil 

User
Posted 02 Jul 2024 at 22:03

Originally Posted by: Online Community Member
sorry to be a sticky in the mud but guess what onslows actor passed with?Goggle it

Poor old Onslow. He was only 68. πŸ™

I loved Geoffrey Hughes in his other well known roles. Eddie Yeats in Coronation Street, Twiggy in the Royle family and Vernon Scripps in Heartbeat. He always made me smile.

Edited by member 02 Jul 2024 at 22:24  | Reason: Additional text

User
Posted 04 Jul 2024 at 12:30

So 3rd Chemo passed without any issues. Except they didn’t get my cold cap sorted and i gave up trying to get them to get it. 

I also asked them if i could stop my Dexamethasone tablet in the morning as it was prescribed by Oncology before the Chemo. Oncology told me to ask the Chemo and they said it’s ok to stop it. So I’ve been taking it for no reason since May. Hope fully i may lose some of the weight I’ve put on now as im sure its down to the that.

Also asked for a record of my recent PSA results. So just before i started chemo in May it was 13.47 which was quite a jump from 9.84 in April. 11th June it went up again to 18.66 then up again slightly on 2 July to 18.85. Can’t help worrying even though they told me this happens and not to worry.

You may recall we had a wedding to go to in the US in August , well as you can guess my Onco said not advised and so we had to cancel flights and hotel. I logged into BA and cancelled the flights and got back all but a small cancellation fee plus 150,000 Avios and a companion voucher. Not sure if it was because we are executive club members or not but it was very easy to do so that was good. We lost one nights charge for a hotel for cancelling and couldn’t claim it back on insurance as it was under my PCa excess.

But we still got another wedding in September down in Ilfracombe so gonna make that a whole week down there. And we also need a week oop North to visit the wife’s brother. 

Been outside this morning sorting out a lock on the side gate. Need to ransack my shed now to find a flat plate to screw on for the bolt….. or I’ll have to flatten one out from something and paint it. No peace for the wicked…!

Hope you guys are all doing ok ? Shorts on today as weather nice although gonna rain all day tomorrow.

Take care 

Phil

User
Posted 05 Jul 2024 at 07:19

Hi 

Sorry to hear about the US,make up for it with some good hols in blighty,I've brought a static in Devon with wonderful see views and going down as much as we possibly can,finish my 10 chemo sessions on 17th July then I'm on the hunt for insurance for Vegas/new York in September and winter hols in the canaries....let's live life ah lol..

Don't worry about your PSA it will begin to fall,your looking for a slow and gradual fall over months my next blood test will be in a few weeks I'll log it on my tread when I get it.

Take care regards Phil 

User
Posted 05 Jul 2024 at 21:03

Phil, we are going to San Fran, Vegas, NYC in November!

User
Posted 06 Jul 2024 at 17:51

Oh I’m right jealous of you two. New year holiday for us . Not sure where yet but a while yet to go. 🀷‍♂️… Hopefully I’ll get some energy back by then. 

Trying not to worry about the PSA. Be nice to see a reduction next time. 

We both tested positive for Covid this morning. Hoping it’s only mild as I really don’t want to have to rock up at A&E with a high temperature… 

cheers 

Phil

User
Posted 06 Jul 2024 at 20:48

Hi Goalhanger,

Sorry to hear about the Covid.  Hope that you're both feeling better soon.

Best wishes,

JedSee.

User
Posted 09 Jul 2024 at 20:00

Still feeling crap. So very tired and a bit breathless , but no fever or cough. I’ve also just started with diarrhoea which is not great. Just gotta make sure I drink enough. The missus is a bit better but still tired. 

By the way my hair is starting to go curly when it’s normally dead straight. 

Oh well tomorrow is another day… ! 

Stay safe, take care 

Phil

 
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