Why can’t they treat my Lymph node PCa

User

Posted 22 May 2025 at 12:25

Keep it up Phil. Wishing you all the best for next week 👍. It’s not the smoothest journey is it… but I’m crossing everything that the cabazitaxel does the business for you.

Mike, Southend won through to the play off final at Wembley last night 🥳. So double celebration. Unfortunately I’m not well enough for that trip.

I’ve seen Southend twice at Cardiff for play off finals and followed Canvey to Villa Park for the FA Trophy final, which they lost…

Cheers

Phil

User

Posted 31 May 2025 at 18:05

Hi guys. I’ve seen my palliative nurse and had a call from my GP. Blood test yesterday and nurse called today to say my white blood cells are low, B12 is low and I am now borderline diabetic….!
Bloody hell. I am finding this all very taxing and hoping they have some stuff to help out. I now have more pills in the morning than I have breakfast…
See what they give me next week. They’ve already started me on antibiotics for my mouth in case it’s oral thrush in the throat..

Anyway, hope you’re all good and enjoying the weather. I had a nap today for 4 hours 🤷🏼.

Phil

User

Posted 31 May 2025 at 18:17

Phil mate, my heart goes out to you. I wish there was something I could do to help out.

User

Posted 31 May 2025 at 18:25

Cheers Adrian. I’m sure they’ll get on top of it eventually….!

Little story : I was in infants school and I’d already moved school once. So I was a bit of a punchy kid and this boy said something at lunch break to me and I smacked him on the nose and he ran off. My Dad taught me to punch first and hard. Next lesson the teacher came in and told me to stand as well as this lad whose name was Adrian 🤔… I stood up and said ‘I didn’t do it ‘ . 🤪

Phil

User

Posted 31 May 2025 at 18:38

What a bloody coincidence. When my dad was in the Army, I lived down south I was at Infants school and there was a tough kid there. Even then, I was cheeky, and made the mistake of being gobby to him. He smacked me in the nose, and I legged it. He was called Phil.

Only kidding mate.

He was a she, called Shirley.😁

User

Posted 31 May 2025 at 19:10

Originally Posted by: Online Community Member

Only kidding mate.

He was a she, called Shirley.😁

Youre so funny Adrian. 🤣 Love it 👍

Edited by member 31 May 2025 at 19:10 | Reason: Not specified

User

Posted 31 May 2025 at 20:57

Hi Phil

Thinking of ya....keep strong 💪

Phil

User

Posted 03 Jun 2025 at 16:01

Well they didn’t do my Radium today as I’ve been taking calcium supplements as prescribed by the registrar which you’re not supposed to do . My consultant is back tomorrow and can make the decision to do it tomorrow or wait a week.
Fingers crossed they’ll do it tomorrow. And presumably tell me to stop the supplements….

Phil

Edited by member 03 Jun 2025 at 19:57 | Reason: Not specified

User

Posted 04 Jun 2025 at 08:39

Hi Phil

Sounds like the right arm doesn't no what the left arm is doing,which doesn't surprise me sometimes buts its you that's stuck in the middle with the anxiety and stress and wondering what the hell is going on,let's hope they sort it soon and get you on the right path.

All the best Phil

User

Posted 04 Jun 2025 at 10:01

Hospital just phoned and they want to do it this afternoon. Also said stay on the calcium supplement for 3 days after. I’m gonna double check that when I go this afternoon. ..

Phil

User

Posted 04 Jun 2025 at 10:44

Yesterday on the way back from hospital my missus said would I mind if she got some fish and chips . I said of course not and id have a pie as I still can’t face fish. She picked it up and popped the bag in the footwell where I was sat, but as soon as the smell wafted up I was gagging. Luckily we’re only 2 minutes away. So I survived with the windows open. But we got indoors and I think I vomited every bit of liquid in my stomach up. It was so awful and the missus had to eat her tea in the conservatory so I couldn’t smell it.

No one in my hospital team seems that bothered by this. Palliative nurse has tried a few things but nothings changed…

I know they are just trying to keep us alive but they should understand ‘quality of life’ as well. It’s really getting me down as I used to love nice food and going out. The manager of one of our favourite restaurants actually WhatsApped to see how I was yesterday. How nice is that .

Anyway… off to the hospital later .

Take care

Phil

User

Posted 04 Jun 2025 at 12:13

Hi Phil,

So sorry to see that you're having such a rough time, it must be horrible for you and your family. I can only hope that your hospital visit brings something positive.

All the best.

Kev.

User

Posted 04 Jun 2025 at 20:46

So sorry things are so difficult right now Phil. Surely the medics can address these issues.

User

Posted 05 Jun 2025 at 09:23

Hi Phil

Feeling your pain.So frustrating to tell people how your feeling when its hard to put into words,I do not want to sound harsh but you do feel like a number or a statistic sometimes,it seems like the right arm does not know what the left arm is doing in your case.

Hoping you get things sorted and treatment resumes.

Stay strong 💪 Phil

User

Posted 05 Jun 2025 at 09:32

Hi guys. Thanks for your replies. 👍

I have a telephone call with my GP shortly to go over my blood test results. Not sure what she can do other than refer me to some kind of specialist. I trued a toasted ham and cheese last night and had one bite and was vomiting my stomach up again…

Had my Radium yesterday as my consultant said it was ok. Just stop the calcium 3 days after and 7 days before…

I will keep you posted.

Cheers

Phil

Edited by member 05 Jun 2025 at 09:44 | Reason: Not specified

User

Posted 05 Jun 2025 at 09:55

Glad you got the Radium sorted Phil, but very sorry to hear about your struggles with food, that must be miserable.

Try and stay positive mate. You are one of the most positive and resilient people on here 👍

Ian.

User

Posted 05 Jun 2025 at 10:47

Hi Phil

Over the past couple of years, although we've never met, you've become a true friend. I hate to see you struggling, and wish someone would get their finger out and make things easier for you.

User

Posted 05 Jun 2025 at 10:48

Cheers Ian, Adrian

I just had my telecon with my GP and she was really thorough .
it appears my CRP has gone up from 20 to 62 in a couple of days. CRP is a measure of an infection. So another blood test now …!
Hopefully I’ll have some answers before I see my consultant in 2 weeks.

Phil

Edited by member 05 Jun 2025 at 10:51 | Reason: Not specified

User

Posted 05 Jun 2025 at 18:56

You’ve really been through the wringer my dear. I don’t post too much, as busy in the garden, we have rain today so I’ve caught up a bit.
I hope you’re consultation gives you some answers and a plan.
Hope the new kitchen is looking good, we’ve had a bit of decorating done, still got a few outside things to achieve, a room for my gym and our conservatory leaks, it’s made of oak and needs some serious TLC, finding someone to do it isn’t easy.

David’s got his PSA soon we never lose that stress feeling I hate PSA week.

Take care Phil.

Leila

User

Posted 10 Jun 2025 at 11:16

Quick update. Latest blood test showed CRP up to 139 so GP made me an appointment for yesterday afternoon at 5.30. Told her about my taste issues and lack of appetite and she said go to A&E and wrote a letter to take.

Well we all know what A&E is like but we got seen. They did another blood test and my CRP had gone down to 40. Doctor said it could be the Radium doing it . But we just said we are here because of my mouth and appetite not the CRP. She said what would you like us to do 🤔…

They ended up giving me an infusion of an anti nausea drug Ondensetron with a prescription for pills. Well I couldn’t eat one mouthful of cereal this morning as the milk tasted off. Tried a slice of toast - no good. So not convinced the new meds gonna work.

Palliative care nurse calling today…. We have discussed putting steroids back up to 2mg from 0.5mg.

All my organs are within range so I just don’t know what they can do but I can’t go on like this.

Will keep you all posted .

Take care

Phil

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