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Advanced prostat cancer part 2

User
Posted 16 July 2017 15:47:36(UTC)

Just back from ten days away with no wifi and I thought about you all a lot.

I was very apprehensive to open the page because I know how seriously ill Trevor was before I went.

What can I say. Wonderful homecoming news. Thanks for the update.

What a man

We can't control the winds - but we can adjust our sails
User
Posted 17 July 2017 20:42:49(UTC)
What fantastic news Julie, could not be happier to see this update. Amazing.

I expect you are shattered, please try to take care of yourself, I know it must be so hard to do with everything you've got going on but you are the family powerhouse and they need you.

Lots of love
Devonmaid xxx
User
Posted 18 July 2017 07:50:51(UTC)

really good,just hope i will be as brave as trevor.

User
Posted 18 July 2017 10:19:28(UTC)

Thrilled to bits for everyone in your world (dogs too!)

 

Kev

Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 18 July 2017 21:50:22(UTC)
So what a crazy roller coaster ride we have had in our pca journey .! We have just about ridden every loop the loop possible .
Firstly the good news Trevor is recovering well and gaining strength daily he is still weak and his energy levels are soon exhausted he is very much battered / bruised and very wobbly around the edges but he is getting there and that spirit of his is fighting back. 🤗

THE FAT LADY HASNT EVEN GOT ON STAGE YET

Wiz visit yesterday and I will get to the scores on the doors but first the embarrassment on her face was obvious she admitted that the Drs on the general ward had totally misread Trevor's condition . She also admitted that heads had started to roll . So basically he went in for breakthrough pain and when the pain wasn't under control they upped the morphine level to such a high level that he was unable to communicate.

The pain wasn't actually coming from the cancer it was from the lung infection but we were told it was from mets in his sternum.
His blood results showed an infection but it was ignored , his swollen stomach was wrongly diagnosed as cancer in his liver , his confusion was wrongly diagnosed as cancer in his brain.
His kidney problems were wrongly diagnosed as cancer in his kidneys and when the DR on the general ward told me that Trevor only had weeks to go that was also wrong all of this was diagnosed with no hard facts , no scans just assumptions .
Basically they had written him of without hard evidence . But they hadn't asked me what I thought and they certainly hadn't asked Trevor.

If assumptions were the only thing to go on then Trevor would have died 10 years ago when he arrested with a heart attack in the Royal London ! But he didn't and I am famous for my Buts .
It is so scary that if I hadn't have been there fighting his corner then this post would have a very different outcome.
So the confusion wasn't spread to his brain but from overdose of morphine and the Sepsis
His swollen stomach was gas and food because he was unable to eat and couldn't pass stools
Kidney damage was because he wasn't able to drink himself and was severely dehydrated

His scans have confirmed .
No spread to soft tissue
No new mets to skeleton


I have had my moan and I will be making a formal complaint BUT not yet I need my energy for Trevor , I don't know how he has come through that I don't know how all of us have come through BUT we have . We have all survived to tell the tale

WHAT IS HE MADE OF its crazy , I don't have the answers all I know is he has such a zest for life and QUIT isn't in his vocabulary.


So this is were it gets even weirder Abbi was stopped at the beginning of June when he was admitted to hospital
The Wiz explained that she expected a pretty big rise is PSA over the last month without Abbi and not to be alarmed.

So SCORES ON THE DOORS
PSA JUNE - just before admition to hospital - 4723
PSA after no Abbi for a month - 1787

😱😱😱😱😱😱
W T F happened there I need to say that again WTF happened there .

1787 How Can That Be .
I did get them to check and recheck

Toatly gobsmacked , lost for words just totally gobsmacked . I know Lyn sometimes with ext spread the PSA lowers but scans aren't showing that. 🙃

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 19 July 2017 00:26:12(UTC)

Wow!

User
Posted 19 July 2017 06:14:22(UTC)

Great news
Best wishes to all
Debby

User
Posted 19 July 2017 06:32:14(UTC)
Amazing!
User
Posted 19 July 2017 06:33:34(UTC)

Well done and keep up the fight. Best wishes.

User
Posted 19 July 2017 07:30:13(UTC)

So pleased that Trevor is recovering. As hiitsme says, keep fighting (I know you will anyway - you don't need encouragement from us I'm sure)

You also know that it is sooooooo important that you now relax when you can and look after yourself. You've been like a piece of elastic , the past few weeks especially

You know what happens to elastic that is left in stretch mode. It never again regains it's strength but becomes saggy !!

Can't have you becoming saggy now can we? Trevor needs you, we need you, to be fighting fit.

Just reading your ongoing saga is tiring so God knows what it must be like for you. If there is help available, grab it with both hands and don't be proud.

Look after yourself so you can look after everyone else, like you always do

Thinking about you and hoping for a breather for you

We can't control the winds - but we can adjust our sails
User
Posted 19 July 2017 10:41:36(UTC)
Julie
Wonderful news but very alarming from the point of view of the general ward, that scares me rigid! I almost can't believe that they just wrote him off like that (almost but I can I'm afraid). I lost my trust in the NHS some time ago I'm really sorry to say, something is rotten there and needs to be sorted. Of course I'm not saying that there isn't fine and fantastic work there, there is and I've been witness to that too but when you think of people with no one to fight their corner, it's just frightening.

Anyway, you've got through that and Trevor suffered more due to his poor management and that's not right. Between you though, you are the epitome of fighting spirit and that far lady isn't getting on stage today nor in the near future.

I can only think you must be so exhausted by all of this, I really don't know how you cope, but you do. You are remarkable.

So happy that your man is improving, he's a superstar with a superstar caring for him.

Lots of love
Devonmaid xxxx
Thanked 1 time
User
Posted 19 July 2017 11:14:06(UTC)

Originally Posted by: Online Community Member
I almost can't believe that they just wrote him off like that

This is what makes me really mad. I am in favour of voluntary euthanasia. I want the right to say "that's it, I've had enough, time to switch me off please". I know what response I'll get if/when I say it. Trevor, he's got more desire to live than probably any 10 of the rest for us. And he gets written off!!!

FFS.

Thanked 1 time
User
Posted 19 July 2017 17:17:25(UTC)

That PSA drop is incredible. In pattern terms it's a halving which is pretty good. This may be a positive reaction to stopping a drug. I had the same when I stopped casodex, surprising but it happens. Whatever, despite the worst efforts of the general ward Trevor is on his way back. Brilliant news.

And for you julie I hope you can get some time for yourself you know you need to have some time just for you. Thinking of you all.

Thanked 1 time
User
Posted 20 July 2017 00:04:31(UTC)
I have just got back from presenting to the national conference football, and as ever your tales have encouraged me to never stop believing Well done u n Trevor, rooting for u every day, Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 1 time
User
Posted 20 July 2017 16:54:42(UTC)

I have to take a deep breath before reading your updates Julie ! but that PSA reduction is amazing - no one would have expected that. Glad things are a bit easier x

User
Posted 26 July 2017 07:20:59(UTC)

Fantastic news - I kept thinking about you while we were away and would never have dared hope to see an update like this when I got back. Lots of love and magic to you all xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 26 July 2017 23:04:02(UTC)

Brilliant Julie. xxxxhugsxxxx

User
Posted 29 July 2017 23:21:12(UTC)

Just dropped into this thread for the first time tonight and read it from beginning to end. Julie and Trevor your journey has been both gripping and inspiring. Keep on keeping on! (I think it's the words of a song, but I don't know by who!)

User
Posted 30 July 2017 14:54:39(UTC)

Great news and glad 'they' have now established Trevor's symptoms but meantime worry as well as delay in getting proper response. Seems even doctors are too quick to assume PCa is attributable for everything.

Barry
User
Posted 03 August 2017 00:10:18(UTC)
So what are we upto all I can say is he is getting there . His energy levels are getting better he is driving and we have even made a trip to B&Q 🤗 Although he did have to sit on the display chair for a rest .

Driving how crazy is that when the ward Dr said he only had weeks to live .
He is still low in energy but I am amazed / gobsmacked in just how much fight and strength he has to cope with everything that he has had to deal with .

We are having two weekly oncology visits since starting back on Abbiraterone and all bloods are good other than PSA of course .
So we had the massive drop but as I would have predicted we have know had a rise.
So PSA up by 300 in two weeks

Just to put our journey into perspective a 300! Psa rise in two weeks would seem horrendous for most but for us we are still 10,000 under our starting point .
Also life doesn't define us by what our PSA is doing , life defines us in how Trevor is feeling from day to day.

TODAY IS A GOOOD DAY x

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 August 2017 07:06:36(UTC)

Bloody marvelous.

User
Posted 03 August 2017 07:43:13(UTC)

And how long before you're going to expect him to mow the grass? Or is that on hold for the time being? Anyway so pleased to hear you have him back again and able to do things together. Sounded so unlikely a few weeks ago.

User
Posted 03 August 2017 08:11:43(UTC)

Mow the grass???? Julie has a strap-on and Trevor isn't allowed near it :-)

Great news Julie xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 1 time
User
Posted 03 August 2017 09:12:44(UTC)
Marvellous news, just shows you can't keep a good man down.

Keep it up

Roy
User
Posted 03 August 2017 10:25:28(UTC)

Hi Julie and Trevor,

We're in awe of 'Super Trev'.

As you say, how crazy it is that the ward doctor gave him a few weeks to live.
He seriously underestimated who he was dealing with.

Your two are a force of nature, absolutely unstoppable, and your posts light up the days of those here who have been worried sick after being given similar prognoses by doctors.

These medics don't seem to realise that patients are not just statistics.

We're each unique, and if you add in defiance and stubbornness, then statistics are out the window!

Long may Trevor continue to defy them all.

Warmest wishes,

George & Lynn

Thanked 2 times
User
Posted 03 August 2017 13:17:46(UTC)

Great news, brought a smile to my face.  Trevor gives hope to us all.

Ulsterman

User
Posted 03 August 2017 21:53:06(UTC)
Julie,
I'd be delighted if John drove or cut the grass! I don't know how your fella does it, but he is truly an amazing man with an amazing family.

Love you lots
Devonmaid xxx
User
Posted 04 August 2017 20:02:19(UTC)

Hello Julie, hello Trevor,

it's been a while since I visited here and I apologise.

 

How you and Trevor have been treated by the hospital is horrendous.  If Trevor had received proper care, who knows how he may be feeling today? And the massive drop in his PSA numbers - wow!

He is back driving? Wow, he is superman indeed!  Trevor certainly has a wonderful zest for life. Long may it continue.

 

 

Frank.

 

User
Posted 07 August 2017 02:20:55(UTC)

Hi Julie & Trevor. I've been away with my OH & tried to pretend there's no PCa in our lives so not been on here for a few weeks. I can't believe that I'm not typing a very different comment - Trevor is surely made of something that should be bottled & prescribed on all hospital wards; that'd free up some bed spaces! Julie, likewise, you are my PCa OH Hero 😌 This thread is nothing short of an inspirational lesson in fortitude & love. Praying that life is calmer for you & the kids at the moment.
Mel x

User
Posted 05 September 2017 22:00:35(UTC)
Ok guys so PSA climbing rapidly 3.200 since July so pretty much doubled in 8 weeks I will let all of the mathematicians work out the doubling time , but still under the 4000pre Sepsis here comes the important bit AlP is steady and all other bloods are good.
A bit of a cough but all in all feeling good , looking good and energy levels are on the UP
Life is back to fairly normal ! Well normal for us he is not yet back on the ride on but hey there is time before summer is completely over.
Life on the Trevor roller coaster continues and he is booking tickets for those that would like to ride in 2018 .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 05 September 2017 22:27:49(UTC)

Amazing - proved again that the PSA is not as important as how he feels!

Lots of love to you all xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 08 September 2017 10:35:32(UTC)

So good to hear this Julie.

User
Posted 08 September 2017 17:29:55(UTC)

Brilliant new Julie. Thank you for the positive (sort of !) update

We can't control the winds - but we can adjust our sails
User
Posted 09 September 2017 07:11:51(UTC)

Sending best wishes and hope he continues to improve - just amazing

User
Posted 09 September 2017 16:45:15(UTC)

WOW.

What else can I say but well done, you might let him back out on the 'ride-on'?

xxxxhugsxxxx
Chris.

User
Posted 20 September 2017 20:26:03(UTC)
Hello my lovelies ,
Wiz on Mon just gone and she is still flabbergasted at the drop in PSA when Trevor was of treatment for a month ( Abbiraterone) she has never seen the like . ! 😳

So back to reality and latest PSA up to 3800 it had to happen but hey we have got about 15 years for it to rise to the original 13000 . The all important bone markers are good everything is stable and all other bloods are good .

The blot on the horizon is still the teeth and abscess that is ongoing , Trevor has to constantly wear a very large plaster covering his jaw he has now got a second eruption in his skin were puss is oosing from . Aunty Bs back on board.
Nothing much can be done internally as the healing process is compromised from the Zometa . But hey in the grand scheme of things it is just a blot on the horizon.

For Trevor not being able to eat the foods he loves has hit hard he loves his food , chewing anything is a problem .
He loves roast lamb with all the trimmings and has been craving it for ages but he just can't chew it so when on Sat he brought me a recipe for 7 hr slow roast leg of lamb
I am not going to lie my first thought was 7 hrs wrestling a leg of lamb wasn't my idea of a lazy Sun , not that my Sunday's are ever lazy . 😄
Second thought was Jules you can do this , third thought was how about I do two legs of lamb and skip mid week meals. I am nothing if not resourceful.

As it turned out 7 hr lamb is only 45mins prep and 6 hrs on the sofa watching " only fools and and horses reruns " Cooshty 😁
So Sun lunch was
7 hr lamb
Dauphinois potatoes
Spinach
Carrots with honey glaze

Home made rice pudding.

Tonight's tea
Was Lamb ragu, Trevor said is that spaghetti bolognaise , 😂😂😂😂😂
I said not on my watch .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 21 September 2017 06:26:08(UTC)

What a lovely upbeat post Julie. Great to see some normality return to your life, hope it continues for the next 15 years, worried about 2032!

User
Posted 21 September 2017 07:34:18(UTC)

Julie,

If you think slow roast leg of lamb is lovely and soft and lambie, then you really must give slow roast shoulder of lamb a try, OMG Trevor will think he's died and gone to heaven (hmmm, perhaps not the best analogy I could have chosen). Mrs _ColU has got a lovely recipe for it which involves wrapping it in tin foil together with carrots and leeks. Let me know if you would like me to send it to you.

David

User
Posted 21 September 2017 07:56:13(UTC)

Lovely post Julie.

I don't eat a lot of meat but will eat lamb and chicken, but only if I can have the outside of the joint and as chief cook and bottle washer that's my perk!!

I have been known in the past to throw the meat and lamb and veg in one of those oven bags (which I normally avoid because I'm not keen on plastic, especially the heated kind) but when we've come back from a 3 hour walk and you open the front door to the smell of roast that's a lovely cosy feeling. All I needed to do was rescue the joint, put the potatoes on high for 15 minutes to brown off, cook a bit of green and we were ready.
It's almost like somebody else has cooked it for you!!

Glad Trevor enjoyed the taste. I bet he was salivating at the smell too

We can't control the winds - but we can adjust our sails
User
Posted 21 September 2017 16:39:45(UTC)
Hi Julie
So pleased to see that things are remaining stable.Is Trevor still the king of turmeric because something is working
Hope the boys are enjoying being back at school 😄
Si xx
Don't deny the diagnosis; try to defy the verdict
User
Posted 21 September 2017 18:58:11(UTC)

So happy to see that the bloods are stable but this mouth thing must be dreadful to live with - I know you play a lot of it down when you are posting.

Lots of love as always x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 21 September 2017 21:05:49(UTC)

Great to hear everything is stable Julie. That lamb sounds beaut....

Hope you and the kids are also ok

Bri x

User
Posted 21 September 2017 23:47:15(UTC)
Lyn you know me to well I do ttry and play the mouth issue down because I don't want to put others of from having Zometa it worked brilliantly for Trevor for 3 years and his is a very rare side affect , but it is horrendous he has to flush his mouth with a syringe 3x times per day and use Corysidil after every meal . The bone is still growing between the bottom teeth pushing them out and the extractions he had in Jan are still not healed because the Zometa stops the healing process. It's a rock and a hard place . He is seen every 2 weeks at the hospital but only to monitor there isn't anything more they can do . Long term plan is to file the bone growth back down but if they can't guarantee his gums will heal they are reluctant to attemp anything more.
So to be able to chew anything is almost impossible and for Trevor who has always been such a foodie it is depressing.

Si Trevor gave up Turmeric and adopted the Fosters diet about 11 months ago , to do a proper scientific study we need you to give up Fosters and go on the Turmeric diet and then we can swap analysis data . You can't cheat though and put Turmeric in your Fosters because that won't work . 😄 That would just fuddle the stats and then Jamie would be in in a downward spiral and end up thoroughly confused , can you imagine if he was looking after both of you.. 😳

David yes please send the recipe I am stocking up on lamb and foil at this moment .

Love to you all X

BFN
Julie X


NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 22 September 2017 01:30:22(UTC)

Julie it is so good to see your post. When thinking about the future I think of you two & your boys & know we can kick ass too. You are such an inspiration. I'm sure there are whole days when you feel anything but & as Lyn said, I'm sure you give us the good bits with spin on the rest, but my God are you two awesome! Thank you for your honesty (strangely, considering the last sentence!) and your record of life with Trevor.
Mel x

User
Posted 24 September 2017 13:13:51(UTC)

SLOW COOKED SHOULDER OF LAMB IN FOIL

Ingredients for 2 - 3
A lean half shoulder of lamb, preferably blade.
6 small – medium carrots, peeled and topped but left whole
2 medium leeks, peeled, darkest green removed and each cut into 3 pieces
2 – 4 cloves garlic, peeled and thinly sliced (optional)
Chopped herbs – any combination of thyme, mint, rosemary
500 ml chicken or lamb stock – from stock cube is fine as long as it’s low salt
e.g. Kallo
1 tablespoon oil
Seasoning


Method
Place a large piece of turkey foil in a roasting pan, long enough to make a not
too tight envelope around the lamb and vegetables. Take care not to tear or
puncture it.
Place the carrots and leeks in the foil.
Trim any excess fat from underneath the lamb and from the sides of the joint.
Heat the oil in a large frying pan and brown the lamb all over, particularly the
skin side. Drain the lamb of fat and place it on top of the vegetables. Sprinkle
over the herbs and the garlic slices, if using. Add about 100 ml liquid - red or
white wine, or sherry, or some of the stock. Season with a little salt (not too
much as the gravy is made by reduction) and fresh ground pepper. Bring two
edges of the foil together and fold them to make a seal. Now fold or scrunch
up the other two edges to make a seal each side. You should now have a not
too tight foil parcel in the roasting pan.
Place the pan in the oven an cook at 150 C (Fan 135 C) for 3½ hours.
Carfully open the foil and use a couple of forks to move the lamb to an
ovenproof dish. The lamb should be very soft and easy to pull away from the
bone. If you want to crisp the skin a bit, turn the oven up to 220 C (Fan 200 C)
and cook the lamb for about a further 15 mins. Otherwise just keep it warm.
Meanwhile, transfer the vegetables to a dish and keep warm. Pour the liquid
from the foil into a saucepan. Add the stock and boil rapidly to reduce and
create a nice gravy. Season to taste. If you want a minty gravy, add a
teaspoon or two of mint sauce.


Options
Whole shoulder can be cooked like this, but will probably take 4 –5 hours
depending on size. Most root vegetables including small potatoes can be
used. Peeled whole banana shallots are a nice alternative to leeks.
For a Spanish flavour use peppers cut into large chunks instead of leeks, add
a teaspoon or two of smoked paprika and some dry sherry to the foil parcel.
Curry spices can also be used for an Indian flavour.

Thanked 2 times
User
Posted 28 September 2017 19:40:15(UTC)
So the highs and the lows update also the ups and the downs.
Since the Sepsis and all of the lows that bought things have been generally on a high , Trevor has felt well and life had returned pretty much to normal ! Well our normal . Our crazy normal since this whole journey started.

So highs he survived the Sepsis .
The ups is as usual the PSA 3800
The low was how much the Sepsis took out of him

We have had 2 months of him feeling better and looking better another high.

Of course as with any high there has to be a low !
So in the last few weeks the bone pain has returned with a vengeance he is back on the higher dose morphine which is controlling the pain but the downside is he is much more sleepy.
New scans have been organised for next Thurs , he has extra pain in his back, shoulder and ribs.
Mobility is another low he is finding it difficult to walk or sit unaided .
Things seem to have progressed quickly, but hey we have been here before , we have beaten the odds so many times .
Can we turn this low into a high ! Watch this space .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 September 2017 20:00:31(UTC)

Hugs from me Julie. XX

We can't control the winds - but we can adjust our sails
User
Posted 28 September 2017 20:03:15(UTC)

And hugs and love and more hugs from me too.

Rxxx

Thanked 1 time
User
Posted 29 September 2017 07:14:29(UTC)

Sending hugs as well

User
Posted 29 September 2017 08:22:59(UTC)

Tonnes of love to you both. You've been through so much. Xx




If life gives you lemons , then make lemonade
 
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