Advanced prostat cancer part 2

Ah ha. I did it!!

You are all my safe haven , my outlet to the roller coaster ride that this disease wants to spin me on and it spins me quite often .

Just want to say a Huge Thank You to every one of you.

BFN

Julie X

I haven't been able to log on since last Thur but thanks to Carol she has been able to sort it for me 👍

Had I have been able to update on Sun my post would have been everything is tickety Boo and we are chugging along nicely so fast forward 24hrs and the tornado struck.

All was fine until lunch time and then Trevor had tighning in his chest /nausea/blurred vision /sweating and excessive yawning , the yawning isn't described as a symptom in heart attacks but in previous attacks with Trevor this has happened so something to watch out for guys.

It is probably lack of oxygen to the brain caused by blockage in the arteries.

He took his gtn spray but the pain continued

So I hit the panick button , ecg was normal but he has had normal ecg before and then 20 mins later had a full blown heart attack so the paramedics decided to blue light him to Peterborough .

His blood tests X2 were normal ( they check for markers to see if the Heart has been under stress) it has got a name but I can't remember it.

He was allowed home last night looking and feeling much better! Phew!

So the Nuclear scan to check his arteries was already booked for Thur so that will go ahead as planned he has been having niggling issues for a few months hence the investigations . When we have been this route previously while waiting for appointments he has managed to jump the que by having a heart attack so you can understand my haste to hit the panick button and thank goodness I have in the past because quite honestly I wouldn't be sitting here typing about him if I hadn't.

Bless Trevor he is still trying to persuade me it was probably indigestion as ecg and bloods were normal but I know it wasn't indigestion and there is a blockage somewhere. Just hoping it is a collapse of previous stents and not that he will need new ones as that is a bigger procedure. Plus he already has 8 stents.

So today the sun is shining and everything is calm let's hope it stays that way .

BFN

Julie X

My head is full of disturbing images of po-going up open drawbridges on mobility scooters shouting 'tits' in a time-lapse. Best I go and lie down in a darkened room with a wet flannel over my face until I calm down.

Gems you lot!

E

x

PSA up from 3052 to 3473 I know dizzying heights but hey we have had worse.

ALP down from 355 to 244 again I know dizzying heights but hey it's gone down .

Calcium is low and T has been prescribed tablets plus vitamin D is also low if anyone knows if there is a conection I would be grateful to hear from you.

T is feeling ok and we are bumping along he has had a follow up appointment on his jaw and the healing has been slow as predicted so they won't attempt more treatment until his jaw is healed from the last onslaught but his eating has been better so ok he still can't chew nuts 🌰 but he has progressed massively in things he can eat so the 300 cans of soup have know been moved to the back of the cupboard . He has developed a taste for shell fish he couldn't chew a prawn 6 weeks ago so it's been a bit of a secret challenge to tackle a scallop 🤗

It has opened up a whole new recipe of turmeric based dishes 😛.

The heart issues are still ongoing and he is still experiencing tightenings and twinges next appointment is on the 30th for more tests I know it is just a coincidence but the pain he gets under his armpit I thought I was coming out in sympathy with him but I then realised it's my wire from my bra sticking in me. 😆

Lots of love to all.

BFN

Julie X

So good to hear you are still standing, scallop-tackling and making us splutter (mine was wine but I forgive you) in spite of the usual mad results Julie. PSA clearly has no meaning for Trevor so best we just concentrate on the bit that's coming down and give loud hoorahs for that. And another set of loud hoorahs for the fact that you don't have galloping armpit disease. (I've decided to go commando chestwise and give up on bras altogether - except for important occasions obviously - the Queen's garden party, the Oscars etc. Never found one that's even remotely comfortable...)

I think that you need Vitamin D in order to absorb Calcium but not sure quite what the link is. Maybe if the former is low it limits take-up of the latter so then you'd need a booster for both I guess?

Sorry to hear about the continued heart problems, and the slow recover from the horrendous teeth op. Extraordinary people the pair of you.

Keep on trucking.

Hugs

Eleanor

xxx

Scallops, prawns, yum yum yum yum yum!

Now all it needs is a nice, well hopped, beer to wash them down. I recommend St Austell Brewery's Proper Job, 4 for £6 from Mr Tesco.

I have slight bone thinning which I was told was as a result of the HT. My oncologist prescribed Adcal-D3 tablets. When I recently collected my tablets the pharmacist wanted to see me for a medication check, she said vitamin D picks up the calcium from your system (blood stream I think) and puts it into your bones.

Arthur

Ok I will be honest and probably nearing our destination but heck I thought that 4 years ago and yes we have pretty much used all of out tools in the tool box . Trevor had his last infusion of Raduim 223 on the 2nd May.

So just for the record scores on the doors at last oncology visit .

6/417 - PSA 4087

ALP - 201

The mouth issues due to the osteocrenosis are still ongoing and bone is still growing where the extractions where so healing on the gums has been a major issue , Aunty Bs have been ongoing almost every 3 weeks the bone makes wholes in the gum and causes gaps which causes infections the term Hamster and wheel comes to mind.

The heart issues have seemed to settle so phew for that we are still waiting for the test results 😤

So any way that's the bad news out of the way and who knows the cure for advanced pca might be just around the corner ( never give up hope my friends never give up hope )

I have told this story before but I think it is so important.

HOPE that is what they said to us in the beginning , never give up HOPE !

I am a glass half empty so you can imagine my face when they said 4 years ago ! Sorry it's terminal ! Sorry you can't go on trials ! Sorry you can't have chemo ! But never give up hope ! Seriously I thought ! Is she having a laugh ! I thought oh yea that's the standard comment . Hope it's free on the NHS because there isn't anything else we can offer .

I know most of you guys will understand that feeling of hopelessness as we walked away that day with our prescription of HOPE .

For all newbies that are given a prescription of HOPE ! All I can say is cherish it , roll with it , you never know how far hope can take you. Here we are 4 years on and today he hasn't felt too good but tomorrow who knows , tomorrow just might be the day a cure is found .

BFN

Julie X

Edited by member 06 May 2017 at 23:59  | Reason: Not specified