Why can’t they treat my Lymph node PCa

User

Posted 02 Sep 2025 at 21:13

Hi Phil,

You're right, mate. You shouldn't be treated like this. It's cruel to be told things would be done and then to be let down. I hope that very soon, you get attention and service that you deserve.

User

Posted 03 Sep 2025 at 10:55

So this morning my missus drove up the hospital to get a blood test form for my palliative nurse to use tomorrow morning. This one is to see if I’m ok for the radium next week or the week after.

But my missus saw the lead CNS nurse who said she doesn’t think I’ll have any more radium as I have too many issues. Well that’s a blow . Although both my oncologist and his registrar are off at the moment and they will make the final decision.

So feeling a bit deflated right now and wondering what’s next, if anything. Possibly nothing they can do now , just leave it to him upstairs.

take care

Phil

User

Posted 03 Sep 2025 at 11:31

Hi Phil.

My heart goes out to you and your family, mate. I can understand why you feel dejected and the sense of hopelessness that comes with it.

Your strength and resilience has amazed me. Keep fighting on mate.

User

Posted 03 Sep 2025 at 12:29

Thinking of ya Phil 💪

User

Posted 04 Sep 2025 at 09:40

Sorry you’re going through this Phil. Hoping the blood test shows all ok for your next treatment.

We are Southend and it isn’t good, we have to ring to get a blood test form and never get results unless we chase up. Currently still awaiting results from July test next one due October and no form sent.

A stressful situation you are in, made worse for you when there’s poor communication.

Glad your son and wife are on the ball with them.

At the beginning we got results and a form for next time quite promptly each three months, I wonder if the high profile cases have lead to more testing and more patients but of course no more doctors to manage it.

Best wishes.

User

Posted 04 Sep 2025 at 10:19

Palliative nurse here this morning. She dressed my arm where I ripped it open yesterday on the stairs when I had a bit of a breathing issue at the top. Respiratory clinic phoned today funnily enough and said it’s still gonna be a couple of months. So making a GP appointment so I can explain how it’s got worse.

The nurse is updating my painkillers for my back and adding morphine to take when I need.

just gotta wait for my oncologist to decide on the radium now.

Southend hospital always been good up to now with appointments etc. Hopefully it’ll all get back on track .

Phil

User

Posted 04 Sep 2025 at 23:09

Fingers crossed they sort themselves out soon Phil..

User

Posted 04 Sep 2025 at 23:10

Fingers crossed they sort themselves out soon Phil..

User

Posted 05 Sep 2025 at 06:36

Well here I am again on a hospital ward….
Had a blood test yesterday morning at 8.30 at home and by midday ish the hospital phoned and said call an ambulance as my hemoglobin was so low I need a transfusion.

Came in by ambulance and they were l lovely . Lots of tests once I was in including an Xray, and more blood tests.
Still waiting on a ward now for the transfusion.

My daughter in law is a first responder and starting Uni in September to be a paramedic so she’s seeing plenty of action round ours and up here in the hospital 🤣

I’ll keep you guys posted.

Cheers

Phil

User

Posted 05 Sep 2025 at 07:46

I hope the wait isn't too long for you Phil 🤞

User

Posted 05 Sep 2025 at 08:43

Originally Posted by: Online Community Member

Still waiting on a ward now for the transfusion.

Phil,

I bet your blood group is b+, because you always are.

Good luck, mate.👍

User

Posted 06 Sep 2025 at 09:44

Hi Phil,

Sorry that you're still having a rough time, I hope the transfusion went well and that you made it back home okay.

Good luck,

Kev.

User

Posted 06 Sep 2025 at 14:46

Still here. Sounds like I’ll have another infusion as I saw a consultant this morning. I’m so tired and I’ve got diarrhoea since I got here and it’s wearing me out keep walking up to the toilet even with a walker.

No idea when I’ll get released… although I suppose I’m better off here.

Had a blood test this morning, see what that brings on…

Cheers guys,

Keep on enjoying what you do 👍

Phil

User

Posted 06 Sep 2025 at 21:25

Dear Phil, I’m so sorry to see you are having such a torrid time. I haven’t been on the site much as it’s so difficult to get on, I have found it quite frustrating. So I haven’t been up to date on you lovely lads.
I hope you get released from hospital soon, well transfused and feeling better.
Take care.

Leila

User

Posted 08 Sep 2025 at 20:54

Hi guys.

Very quick update. Just had a visit from one of my registrars . 8pm , just as the wife and son and DiL were leaving.
Turns out I have a shadow on one lung now and my lymph nodes are burning brighter.
Haemoglobin probably needs another boost and platelets still low but could be ok soon.

They’d like to do some more chemo but need me to be stronger. No more Radium though. So I’ve really got to try to eat and drink more/better.

So not what I wanted to hear but just have roll with it. Not sure how long I’ll have left now…! Bit tearful at the moment but can’t be like that .

Was hard as my wife had to leave straight away. So, so hard on her and the family.

So guys, enjoy every day 👍

Take care

Phil

User

Posted 08 Sep 2025 at 23:07

Sending love thoughts and prayers to you and your family

User

Posted 09 Sep 2025 at 02:03

Hi Phil,

What a desperately sad situation, mate. You have every right to be tearful. From the chats we've had on here, I know how much your family mean to you. It must be so difficult for you all. My thoughts are with you.

User

Posted 09 Sep 2025 at 04:39

So very sorry to hear this Phil. Wishing you the very best with your decisions moving forward.

User

Posted 09 Sep 2025 at 08:12

Thanks guys.

it’s great to have you as my wing men.

cheers

Phil

User

Posted 09 Sep 2025 at 08:41

Hi Phil

What can say? Not a lot l...how do you feel pain wise?are the pain killers your on enough to make you feel comfortable,are you able to still get out?local parks in the back garden.

Can they not blast hot spots with radiotherapy?

Don't give in pal 👍 thinking of ya....Phil

User

Posted 09 Sep 2025 at 09:06

Hi Phil.

Still in hospital at the moment and not allowed out of my room unless with the physio. Sometimes getting breathless just sitting but not every time. So I just have to wait for it to pass.

Back still a bit painful but cocodamol helps. Unfortunately sometimes it doesn’t kick in for hours - like last night was really annoying. Other times they kick in quickly.

I need to ask about giving it a blast. I was just listening last night and my wife and son and DiL took it all in and asked questions. So hard for our families isn’t it.

So anyway, see what the week brings…

So take care

Phil

User

Posted 09 Sep 2025 at 11:22

Phil been following your journey for 3 1/2 years, you are an inspiration. My thoughts are with you.

User

Posted 09 Sep 2025 at 14:52

Hi Phil, you have been absolutely amazing, keep fighting. Thinking of you and your family.

Lots of Hugs to you all. Ange & Keith x

User

Posted 09 Sep 2025 at 18:02

It all sounds a bit crap at the minute Phil, sorry to read this. Hope the pain relief makes it easier for you soon.

You've certainly faced into this 'illness' with both courage and dignity, whilst enjoying the good times, re-building the bike and making the most of the time that ticks along for us all with those you love.

User

Posted 09 Sep 2025 at 18:49

Phil, sorry to hear of the situation you are in , afraid I can't offer any practical advice, but thinking of you.

Thanks Chris.

User

Posted 09 Sep 2025 at 20:19

Hi guys.

Funny I wrote about wing men and it made me think of the men who've flown with us in our squadron and are no longer here.

I remember the struggles and pain they went through. We won’t forget them.

So it’s bucked me up to stop feeling sorry for myself. Just listening to England football through me hearing aids…!

Cheers

Phil

User

Posted 09 Sep 2025 at 21:37

Hi Phil,

Sorry to hear this, we're sending you our best wishes.

Kev.

User

Posted 10 Sep 2025 at 08:29

Yes I'm the same with the pain killers,I make a note of what I've taken and at what time,I find it helps,so I take pain relief before the pain kicks in,it takes time to get into your system.

I've found that dissolvable pain killers get into your system quicker,the down side to pain relief is constipation,I get it terrible...sorry to be crude but I can be on loo upto an hour getting the bugger out.

All the best phil...keep us all updated.

Phil

User

Posted 10 Sep 2025 at 11:26

Yes the pain killers can be a bit erratic at when they kick in. Good idea to note the times down.

I usually have 2 1500/500 cocodamol st bed time then possibly if I wake in the night I have 2 more.

I also take a Laxedo every night at bed time as I really don’t want constipation. I ended up passing out with the pain and in A&E where they cleared it out…. Not pleasant…

Phil

User

Posted 10 Sep 2025 at 12:26

Yes the pain killers can be a bit erratic at when they kick in. Good idea to note the times down.

I usually have 2 1500/500 cocodamol st bed time then possibly if I wake in the night I have 2 more.

I also take a Laxedo every night at bed time as I really don’t want constipation. I ended up passing out with the pain and in A&E where they cleared it out…. Not pleasant…

Phil

User

Posted 10 Sep 2025 at 15:52

I was overdosing on the penicillin which can do ya liver in,I didn't think penicillin was such a big issue but it can be bad if taking to much and penicillin is in codeine and cocodamol.

Just a thought

Phil

User

Posted 11 Sep 2025 at 23:12

I have been following you for two years (similar situation) and have been inspired and deeply moved by your courage, strength, and grace. I want to thank you for being a light in difficult times. Sending my best wishes to you and your family.

User

Posted 21 Sep 2025 at 19:04

A very quick update to beat the dreaded 502.

Well I’m back in hospital after what we think was another infection. So on a couple of different antibiotic infusions. Feeling better for it. Got a dietician on the case now as well.

Seen the palliative care nurse here in hospital and we’ve got a meeting Tuesday with the team and her director. She spoke to my wife on the phone and mentioned going into a hospice to get my meds sorted. Also consultant asked about resuscitation 😳.. So things are moving along. Maybe a bit too quick for me but I need to cope with it . Back pain still can be excruciating so they are adding another painkiller to the morphine as I had a really difficult night . Had my usual morphine at bed time, 2 lots of liquid morphine and then paracetamol and I eventually got off to sleep. Hopefully tonight with the extra morphine I’ll get off ok.

There’s other stuff I’ve already forgotten but I’ll try to update as when the system allows me..

Hoping it’s not the end I see up in front yet … but I’ll be doing my best to be brave. Maybe it’s someone’s brake lights slowing me down . 🤣

Don’t want to be bitter about it all. I know me and the missus have some discussions to have yet .

So enjoy your days guys.

Cheers

Phil

User

Posted 21 Sep 2025 at 19:53

What an incredibly brave and poignant post, mate. I hope they can reduce the pain. My thoughts are with you and your family.

Edited by member 21 Sep 2025 at 21:17 | Reason: Typo

User

Posted 21 Sep 2025 at 22:47

Thank you for your tremendous courage. I hope the new medications help with the pain and infection and I hope the dietician helps also. My thoughts are with you and your missus and family.

User

Posted 22 Sep 2025 at 17:30

Thanks for your update Phil, you've shown great fortitude throughout, I can't imagine how difficult those discussions may be for you, but hopefully they'll cover off what you need them to.

I think one learning we've all gained from our individual PCA journey is to enjoy all of our days for sure and I've gathered you certainly have. Thinking of you and your family.

Mark

User

Posted 22 Sep 2025 at 17:57

My oldest, who you may or may not know lives in Jersey is moving house on Friday plus they’re expecting their second baby on 10th October.
He is so torn about getting back to see me but I said not to worry and it will all work out. They are moving from a 3 story townhouse with a one year old to a nice normal detached 4 bed with a good garden for both the kids. I’m so pleased for them.

The youngest and his missus just got back from Arnhem for the weekend , both with colds so they can’t come up for a few days…

Guy opposite me in the ward here is in so much pain it’s hard to see. So I think myself lucky there.

Anyway, you guys take care.

Phil

User

Posted 23 Sep 2025 at 04:11

I hope they can keep your pain under control and sort out the infection.

Best wishes,

Kev.

User

Posted 23 Sep 2025 at 16:20

Hi Phil

I have been following your story and really feel for you and your family. You are being incredibly brave and optimistic. Keeping us all updated and getting words of encouragement I hope helps. This is such a terrible disease and I just hope they can get your meds sorted so you can go home and hopefully see the new grandchild soon! Having a family around you for support is wonderful. There must be men out there going through this alone. Keep your spirits up (difficult I know) and just try to enjoy each new day. We are all thinking of you 💕

Linda

User

Posted 23 Sep 2025 at 16:33

Phil, I haven’t been on the site much due to the 502 fiasco. I managed it today and caught up with your hospital stay and pain management.
When your pain levels are managed and the infection is addressed I hope you can spend some good times with your lovely wife and family.
Take care Phil, and pass in my regards to your lovely wife.
Leila x

User

Posted 23 Sep 2025 at 16:54

Hi guys

Quick update as we’re still taking it all in. My cancer has spread to my liver now. That will cause some of the pain. I’m on daily morphine now, plus I can have some every hour if I want.

Home care plan being set up by the palliative team so I can go home.

Few tears shed . My youngest was here and he spoke to our oldest afterwards.

I was hoping to make it past Christmas. But not sure now. Really want to see our new grandson when he pops out.

Anyway guys, keep strong 💪

Phil

User

Posted 23 Sep 2025 at 19:48

Oh Phil,

This is not what I wanted to read when I eventually got onto the site. I haven’t been on the site too much as it’s so difficult to get on.
I hope you and your lovely family have some quality time together, and the palliative care team are able to manage your pain and support you and yours.
Please pass on my heartfelt thoughts to your family.
Leila x

User

Posted 23 Sep 2025 at 19:52

Dear Phil,

This is not what I wanted to read when I eventually got onto the site.

I’ve tried to post a few times but failed.

I hope you and your lovely family get some quality time together, and the team are able to manage your pain.

You and your family are in my thoughts

Leila x

User

Posted 23 Sep 2025 at 19:52

Dear Phil,

This is not what I wanted to read when I eventually got onto the site.

I’ve tried to post a few times but failed.

I hope you and your lovely family get some quality time together, and the team are able to manage your pain.

You and your family are in my thoughts

Leila x

User

Posted 23 Sep 2025 at 21:15

Phil,

Ive not been on here for a while, and was devastated to read your news. I’m so sorry mate. Don’t give up on Christmas yet. My brother’s cancer spread to his liver, and his bones in February, and whilst it is fair to say he is not his old self, he is still battling on. Try and keep as positive as you can, and try and enjoy every day in some way.

I’ll see you in The Proctologist’s Finger, or whatever Adrian named the place 👍

Ian.

User

Posted 24 Sep 2025 at 06:14

Dear Phil,

I’m so sorry to read your latest news. It’s always moving to read your words about your family — your wonderful children are such a reflection of you. I’m sure they, and all your loved ones, are deeply proud and grateful for you. I truly hope your treatment helps ease the pain and gives you precious time with your beautiful family.

I also want to thank you again for being such a true inspiration to me and to this entire community. Your posts — filled with information, thoughtful questions, and courageous decisions — offer important perspective and create a strong sense of connection with you and your family.

Your gratitude and fulfillment have guided me through difficult times and have provided me with guidance for how to be the kind of person I want to be.

WIfe of YM

User

Posted 24 Sep 2025 at 08:15

Hi Phil

My heart bleeds with this news,I feel your pain

As always stay strong 💪 at keep battling

Phil

User

Posted 24 Sep 2025 at 11:06

F**k, f**k, f**k !!!. Why does it always seem to happen to the good guys. 😟

Edited by member 24 Sep 2025 at 11:11 | Reason: Changing letters to ***

User

Posted 24 Sep 2025 at 14:09

Sorry to hear this news... Try and keep battling As long as you can...

User

Posted 25 Sep 2025 at 09:29

So sorry to hear this. My heart hurts for you and your family. Hoping once they get the pain under control you’ll keep fighting as long as you can and get some quality family time and that includes Christmas and your new grandson.

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