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Why can’t they treat my Lymph node PCa

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User

Posted 16 Oct 2024 at 18:07

Update: don’t need to go to hospital but keep monitoring temperature and any symptoms of a water infection call chemo nurses.

Chemo next Wednesday as rearranged.

Onco is ordering an MRI and bone scan. I presume to see status in case I have to stop the chemo.

Cheers

Phil

User

Posted 22 Oct 2024 at 10:05

Update: Ended up in A&E early Sunday morning with serious pain from constipation. Ambulance came and administered paracetamol then morphine. At hospital they fitted a catheter and 1 litre of urine came out. Which seemed to release the constipation and I made quite a mess, quite a few times.

We had a special room for people with chemo and weakened immune systems. Which is great except they got someone else come in on chemo and needed the room. So they kicked me out Sunday afternoon.

Still felt rough so the missus phoned chemo nurses and district nurses. Both very helpful. So yesterday we go some complan. Ugh… yuk. Only way to take it with metal mouth is straight down, which I did but followed by 15 minutes of gagging.
Had to call out district nurse last night as catheter was painful. Guy came and sorted it 👍.

So today blood test and consultant f2f . No way am I having chemo tomorrow but the chemo nurses said they’d really like to carry asap as bloods are all showing good results.

Gonna ask my consultant today about the Prednisone and whether I should go back on it as I believe it’s to help with side effects of the chemo.

Got me wheelchair ready as I’m very unsteady on my feet now.

Hope you guys are all cracking on ?

Take care

Phil

User

Posted 22 Oct 2024 at 10:26

Bloomin' 'eck, Phil. You're going through a hell of a rough time. At least they're pleased with your blood results. Best of luck with your tests and f2f today. I will be thinking of you mate.

User

Posted 22 Oct 2024 at 13:23

Hi Phil,

Adrian sums it up well. We've got our fingers crossed for you too.

Kev.

User

Posted 22 Oct 2024 at 13:39

Everything crossed 🤞 for you too Phil.

Ange & Keith x

User

Posted 22 Oct 2024 at 13:55

So sorry to hear this mate. You’re a trooper 💪💪

User

Posted 22 Oct 2024 at 14:34

So sorry to read this Phil, hope your situation improves very soon.
Leila

User

Posted 22 Oct 2024 at 15:36

Keeping everything crossed for you Phil 🤞🤞

Jackie & Al

User

Posted 22 Oct 2024 at 18:20

Thank you everyone, so lovely to hear from you all .
Just back from hospital. Consultant says I definitely shouldn’t feel like this. So he was surprised A&E didn’t prescribe oral antibiotics at the weekend so he’s done that . Started them already. Started me back on Dexamethasone steroid 1 daily and has postponed the chemo till I can deal with it. All the bloods are showing good results so that’s good.

Catheter coming out Monday morning and a scan in the afternoon to make sure all is working ok.

Had some paracetamol as the catheter still a little uncomfortable.

Hopefully will feel a little better in a few days 👍

Take care everyone

Phil

User

Posted 23 Oct 2024 at 18:41

So, a little more information:

Chemo nurse called and also Palliative Nurse who I’ve been referred to.

My C-reactive protein (CRP) is 115 which is very high and indicates an infection or inflammation. The palliative nurse also said my phosphate is very, very low and she’s coming to see me tomorrow. She told my wife I’m a very poorly man ( as she does the phone for me while I’m crock) … Have to admit I shed a tear when she told me…. 🥴😢

Got to say although we do seem to be getting dribs and drabs of information they are all calling us which is encouraging and at last like someone is listening.

So let’s see what tomorrow brings 👍

take care, look after yourselves

Phil

User

Posted 23 Oct 2024 at 20:26

Phil this is so sad. It only seems like yesterday you were healthy and active and restoring bikes etc. Just doesn’t seem right nor fair. Everything is crossed for you ok

User

Posted 23 Oct 2024 at 21:06

Originally Posted by: Online Community Member
Phil this is so sad. It only seems like yesterday you were healthy and active and restoring bikes etc. Just doesn’t seem right nor fair. Everything is crossed for you ok

Cheers Chris, looking forward to feeling fighting fit again 🤣

Take care

phil

User

Posted 23 Oct 2024 at 22:23

Phil, sorry to see things are not going well. I can sympathise with the pain from constipation. What is painful with the catheter, instilagel, hydrocaine or optilube can help if the eye of the penis is sore,it is available without prescription but you obviously need to speak to your medical team. I have found that a catheter slightly in the wrong position can be extremely uncomfortable, again a bit of gel can ease the discomfort. I also found the bigger catheters are like having toothache in the penis and not much helps with that. Being hydrated for the removal will help, I have had around a dozen urethral catheters, but I have never had a painful removal. Remember to relax.

Hope things improve soon

Thanks Chris

User

Posted 24 Oct 2024 at 13:19

Oh Phil, I’m so sorry you’re having such a rough time at the moment. All I can do is send you my thoughts and hope things improve for you soon.

Derek

User

Posted 24 Oct 2024 at 13:43

Thanks guys.

Constipation was utter agony and the morphine only dulled it.

Yeah, with the catheter it can be difficult to get me winkle in the right place. Ive been taking a couple of paracetamol for that. Hopefully I'm ok when they take it out Monday. I’ll make sure i’m well hydrated.

Had a visit from the Palliative Nurse this morning . She was really good and explained lots of stuff and even applying for a blue badge for us. Seems i have quite bad anaemia but not bad enough for a transfusion. Also my potassium is very low so i might need some pills for that, she’s checking with my GP.

Gave me some tips on what to try to drink to help build me up. Looking forward to a rest from the chemo although i know ill have to resume at some point.

Take care guys,

Phil

User

Posted 25 Oct 2024 at 18:16

Oh Phil, Just seen your post, I hope the discomfort and pain gets to be managed soon. Keep strong me dear, our thoughts are with you and your lovely family.
Leila

User

Posted 27 Oct 2024 at 10:11

Ding Ding round 386 Phil, keep fighting mate

User

Posted 28 Oct 2024 at 17:55

Just a quick update: Catheter removed this morning . Everything working ok 👍 Fingers crossed it stays that way.

Started eating a bit more as the chemo mouth wears off. Still no where near normal but better. Had a very little piece of Shepherds pie last night..

Had a call from palliative nurse today to see how I am. She’s coming to take blood on Thursday. That should show if the potassium, anaemia and CRP are at better levels.

It’s just annoying that I’ll have to do the chemo at some time again. Also still waiting for bone scan. Then in 3 weeks see my consultant again to see if everything is ok with CT scan and bone scan.

It’s just so good to feel a bit better. And to sleep tonight without a wee bag…

Take care everyone

Phil

User

Posted 28 Oct 2024 at 18:00

Glad to hear you are feeling a little better hopefully you improve as the days go on

best wishes

Ann

User

Posted 29 Oct 2024 at 10:54

So pleased to hear you’re feeling better today Phil. Hopefully you’ll have a good night’s sleep too tonight.
Take care and all the best going forward…

Ange & Keith x

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