Why can’t they treat my Lymph node PCa

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

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

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 

Hiya Phil

Feeling for ya pal,seems like your banging your head up against a wall.

Fingers crossed 🤞 they sort something out that suits your needs and yes please keep us all updated .

Regards Phil 

Went into hospital yesterday to see the specialist nurses but she’d spoken to me on the phone and arranged for my consultant to be there too. Really appreciate her thoughtfulness. 

So he’s upped my steroids back up to 2mg from 0.5mg and I’ll just have to deal with weight gain and moon face.. as long as I feel better. 

He also increased my calcium tablets but have to stop them around the Radium.

I’ve got some new anti nausea tablets too. So hope all that helps and will start eating soon. He says blood tests show everything is going to plan. Organs all ok and PSA bouncing around just above 40. 

6 weeks till next f2f consultation. He said phone the CNS nurses if there’s any problems. 

 Cheers 

Phil

Hi guys.

Well another call out to 999 last night. Constipation again . I’m afraid I’m not taking my Laxedo often enough. I was in agony but luckily this time I managed to shift it myself… Or I should say it shifted itself.. 😳 ! But the pain before made me throw up all over my bed… 
Doctor phoned and said they’d send a paramedic/ambulance to check me over which they did and said I was ok to stay at home if I wished. Which I did. So must drink more and take regular Laxedo. 

Phil

I'm a bit worried about Phil. He hasn't posted for a week. I've tried to personal message him and haven't had a reply. Has anyone else been in contact with him. I just hope he hasn't been taken to hospital again?

Great you're, OK mate. You'd not been to our pub for a while and I just had a horrible feeling that you been taken to hospital again. I'm not stalking you, honest.🙂

"I’ll try to update a bit tomorrow and Adrian I might pm you to try to explain where my heads been going. A lot of historical crap I’m afraid."

By all means Phil, I was trained in such issues. You are always welcome, at anytime to give me a call. I'm home all over the weekend.

Edited by member 28 Jun 2025 at 09:49  | Reason: Additional text

Great to here off you Phil

Yes we all have our off days but gotta try and make the most of our good days 

You take care Phil and keep fighting the fight 💪  

Phil 

Hi guys. Just to update my little thread with the latest. 
Was due my radium Tuesday but hadn’t received a letter or a call. After leaving many messages and then hanging on at Nuclear medicine they answered at 10am and told me the radium was postponed for a week and they’d phone with a time. Was a bit annoyed no one had called me.
Well we were at the hospital Tuesday for the wife’s physiotherapy and nuclear medicine called so I said give us 30 mins and we go up there.

So we get there and they told us Oncology hadn’t ordered the radium in time. No idea why. So we have to go to oncology next Tuesday before the radium for a check over and we’re gonna try to find out what happened. Certainly don’t want it happening again and we old have liked better communication…! 

Anyway, hopefully all will go to plan from now on. 

I’ve started to get some pain in the front of my chest now in addition to lower back. So I’m gonna ask in oncology next week if it’s ribs or vertebrae pain. 

So take care chaps. 

Cheers

Phil

Thanks for the update phil

Keeping fingers crossed as always for you and your family,keep on rocking.

Phil 

Hi phil 

Hard to say because I myself do it,don't get hooked on numbers (your PSA) 

Radium is working,thats a positive,your going to have bad days even badder days but make use of the better days which im sure you am.

Always look out for your posts and still trying to catch up with your thread views but im falling behind lol.

All the best phil 

Hope the treatment provides a good result for you Phil. 

Hi Annie. Sorry to hear about your partner’s situation and that the chemo didn’t work out. That is really gutting when you go through it all for nothing.

I’ve had 3 Radium’s now and I don’t think I have any side effects. I have occasional lower back pain at night which could just be where I damaged it years ago. Funnily enough last night it was painful even though I took my usual night time cocodamol (15.500 strength) took another dose at 2am and managed to get to sleep then. 

I’ve lost a lot of weight recently, almost 2 stone but I’m not exercising or eating much so it’s understandable and I’d put on too much anyway... My consultant has increased my steroids to see if that has an effect. I had terrible chemo mouth after my 7th chemo and they stopped it there as I was very ill and couldn’t eat anything as it all tasted horrible. 

I don’t think the Radium will affect eating or appetite. It’s also an easy and quick procedure through a cannula. I’m also on Relugolyx Hormone treatment and I think that’s more likely to have an effect. 
My consultant says that the bloods are showing the Radium’s doing something although I would have like my PSA to have gone down or stayed stable instead of going up quite a bit.. But we have to take whatever we can get. 

I am also under palliative care and they are fantastic. So knowledgeable and helpful. Glad the synthetic morphine patches are working. 

By the way is your partner also going to have the Zolandronic Acid before each Radium? It’s given a week before the radium and it’s also an easy procedure. Just means another visit to the hospital as well as all the blood tests. I have 3 blood tests a month , for the Z/Acid, the radium and for my consultant who I see face to face once a month although he’s just given me longer gap this time of 8 weeks. 

Anyway, hope I’ve been of help and please feel free to ask any questions. 
And it’s great if you can keep some kind of sense of humour. 

Take care, thinking of you both.

Phil