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Advanced prostat cancer part 2

User
Posted 29 September 2017 11:34:20(UTC)

Dear Julie,

We both send you and Trevor loads of love.

I've been absent for a while dealing with annoying problems,which pale into insignificance compared to your epic battle.

Words cannot describe how inspiring you both are. The hope and encouragement you've given (and continue to give) to so many people here is magnificent..

Warmest wishes always,

George & Lynn

Thanked 1 time
User
Posted 29 September 2017 23:44:51(UTC)
Julie & Trevor and family,

Sending you all hugs and hope that things get better again soon.

Steve xxx
User
Posted 30 September 2017 09:10:46(UTC)

Julie Trevor

Hope matters improve soon. Always thinking of you both

Ray

User
Posted 30 September 2017 09:13:49(UTC)

Highs and Ups - hooray - good lads, lets have more of you.
Lows and Downs - boo hiss - on yer bikes, get out of here, we don't need you.

David (aka Chris, Colin, Chester)
xxx

Thanked 1 time
User
Posted 30 September 2017 18:43:27(UTC)
Beginnings and Endings

In the beginning I thought it was the end
Turned out the end was just the beginning
Can't help wondering is this the beginning of the end
How will we know if this is the end

Or is this a new beginning
There has been so many ends
But for every end there is always a beginning
And for every beginning there is always an end

Mountain high Valley low
We have climbed every mountain
And then sunk so low
Then back up the mountain
As high as we can go

How will we ever know
Is this a beginning or is this the end
Is this the beginning of the end
Or just maybe this is end of our beginning


Beginnings and endings
Loads of love to everyone of. You Guys
BFN
Julie
NEVER LAUGH AT A LIVE DRAGON
Thanked 6 times
User
Posted 30 September 2017 19:18:57(UTC)

Fantastic words
Keep fighting that's all any of us can do
Best wishes
Debby

User
Posted 30 September 2017 19:21:58(UTC)
Oh Julie
How come you are able to make simple words into such a powerful package of meaning? You are very, very strong but I think you need the comfort blanket.

Massive hugs
Devonmaid xxx
User
Posted 02 October 2017 07:26:48(UTC)

Oh Julie
Your post made me so sad as did your poem beautiful words. You have been such an inspiration to us all and made me smile so often when Mike was going through his journey and believe me at times it was very hard to smile. We are all thinking of you both and of course your boys. Stay strong and just be you.

Big hugs

Molly xxx

User
Posted 02 October 2017 11:10:19(UTC)

Love this Julie. It is resonant for me of my thread title ‘ever decreasing circles’. We both know the final destination but massive uncertainty of time and place. Just when you think an avenue has been closed off, another opens. It remains a roller coaster with an end point but let’s stay on it fir as long as we can. I’m with you there, all the way.

User
Posted 02 October 2017 22:14:31(UTC)

Powerful words Julie and I can well imagine the anxiety (and exhaustion) that lies behind them. I know that you had problems finding palliative care help in the past but, given that the pain is increasing, and that they are the pain experts, I wonder if it might be worth giving it another try? They made such a difference to us and were a lifeline when things got really tough. Do hope that you and Trevor get the support you need right now. Sending you tons of love and hope and hugs.

Ruth xxx

User
Posted 03 October 2017 06:22:48(UTC)

Like Eleanor, I hope that you can get decent help from the pain clinic or palliative services this time. Is there anything practical we can do to help?

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


User
Posted 17 October 2017 20:43:13(UTC)
So update on what has been happening Trevor’s pain is back under control with an increase in morphine , he has bounced back and is more active and looking and feeling better. phew.

MRI and CT scans were completed two weeks ago and ONC visit Today It’s was with our lovely Oncology Nurse Claire who is an absolute star and without her diagnosis of the Sepsis I have no doubt that I would not be writing this update today because quite simply Trevor would not be here !

I just need to back track to Sat before i do the scores on the door.
We received a letter out of the blue for Trevor to have an ultrasound on his kidneys this Fri this of course sent him and myself into a really spectacular nose dive , this is where I come into my own and like the duck in the water scenario my face and demeanour showed absolute calm when I said they are probably just checking everything from the sepsis.
Even though he knew and I knew that was probably not the case as often happens with couples that have been together for years there is an unwritten rule that when this game starts both parties have to continue the pretence . So even though he knew and I knew neither of us was going to admit it. Funny old game ! It’s a bit like PCA chess.😉

So here we go scores on the doors
Yes you guessed there is good news and bad news

Good news first
ALP Down from 238 in September to 183 so bone markers good
MRI and CT support this no decrease in mets but no increase either, so mets stable and it looks like the Raduim 223 has held things back ( A Yey moment)

That’s kinda it for the good news
PSA up from 3691 to 6265 ouch but hey still half of our starting point

HB is down to 9.5 and we had a bit of a Hoo Haa before they would issue his Abbi they wanted to redo bloods , trust me he wasn’t going to allow it withought a fight he hates doing bloods . It took me twenty mins to persuade him and then they couldn’t get any blood after trying from both arms . Eventually they got enough to test and all ok to prescribe his Abbi

Back to the kidneys and there are two suspected areas hence the ultrasound scans on Fri
Outcomes could be
Benign growth
Pca spread
Cancer of the kidney not connected with pca

There is also an increase in size on 2 lymph glands


What can I say we have faced the Dragon many times and we have continued, so come on Dragon bring it on ! You don’t know who you are messing with !

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 October 2017 21:38:37(UTC)

Originally Posted by: Online Community Member
 You don’t know who you are messing with !

BFN
Julie X

 

Never was a truer word said - it seems that train ticket you bought is still valid for a few more trips xxx

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


Thanked 1 time
User
Posted 18 October 2017 07:38:19(UTC)

The dragon has met his fire eating match!! You go girl!!

We can't control the winds - but we can adjust our sails
User
Posted 19 October 2017 21:24:14(UTC)
I have just watched Children’s hospital and for me it puts everything into perspective there was a 15 year old girl with Non Hodgkins Lymphoma who had undergone 15 rounds of chemo and her 11 year old sister has just donated her bone marrow to help .

For me these are babies that haven’t lived a full life and are facing so many trials and hardships .

So what am I trying to say I suppose although yes for us life is tough / for others it is much tougher .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 23 October 2017 18:57:59(UTC)
The good news and the bad news.
The scan on the kidney has revealed option A It’s a benign cyst.....PHEW

Bad news Trevor has had a huge spike in pain over the weekend and everything we tried had little to no effect so he was admitted to hospital this morning hopefully to get the pain back under control.
I must admit I am a bit confused as the worst of the pain sites are where the worst mets are , shoulder, spine and pelvis and yet the recent scans showed no increase in size in these areas.
I suppose with the spike in PSA up to 6265 the cancer must be roaring away somewhere even if it’s not showing on the scan.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 October 2017 19:33:12(UTC)

Hello Julie,

I'm full of admiration, for the way you continue to keep us informed of Trevor's difficult pca journey.  Trevor is certainly made of stronger stuff than I am.

 

Since my radiotherapy treatment, I don't mow the grass, my wife won't let me. But I am able to drive the car, but not for long distances. My only worry is tiredness, and lack of body strength, why I don't know - I'm not as ill as your brave Trevor.

 

I continue to pray for continued blessings, for Trevor, yourself and the family.

 

 

Frank.

Thanked 1 time
User
Posted 25 October 2017 19:44:13(UTC)
Hi Frank, thank you for the response glad to hear you are still driving .

Update is Trevor is still in Peterborough hospital and to be honest there isn’t much improvement his pain level has gone from a level 12 to around 8 , he is very sleepy and zonked out , he isn’t eating or drinking so they have started IV fluids today .
He is unable to move even to shift position in bed.
So we are pretty much back to where he was a few months ago.
He is back on the general ward where he was so badly treated in the summer, I have raised the roof today and said I want him moved ASAP onto an Oncology but beds are limited.

If anyone has got help or advice on how to get him moved to hospice care for pain management I would be really grateful .
Watching him struggle again is horrendous.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 October 2017 20:02:42(UTC)

Julie our hearts are with you all I promise. I so hope you can get a hospice position as I’ve hesrd pain management can be awful on wards. I couldn’t even get a Diazepam or sleeping tablet , even though I was already prescribed them both , even when threatening to hang myself out of the window. Pretty awful days tbh.
Keep fighting and trying. Your battle has been so amazing you can’t give in xx




If life gives you lemons , then make lemonade
User
Posted 25 October 2017 20:28:30(UTC)

Hi Julie

So so sorry to hear the news Julie - must be hell for you to see Trevor in pain and back in a ward that you have no faith in.

No idea if this is of any help since I expect procedures and bureaucracy vary a lot depending on where you live but I ended up phoning our local hospice at 8.00am on Saturday a week before Tony died to ask/beg for a bed for him. My hope was that they could rebalance his meds and strengthen him enough to get him home again. They said they had one bed available and that I should call the out-of-hours GP to come and complete an admissions form. He came immediately and did so. We were getting packed when sadly they phoned to say that an emergency admission was on his way and that he would have priority, but in principle it was all very easy. If it hadn't been a weekend the palliative care consultant would have organised it for me but I was surprised at how straightforward it was to go direct.

Is there a local hospice you could phone to see what's possible? Apologies if you have already tried that route.

Will be thinking of you and sending love and hugs. I do feel for you lovely lady.

Ruth xxx

 

User
Posted 25 October 2017 20:48:13(UTC)
Sorry I can't help but sending every good vibe I have, thinking of you both
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 25 October 2017 21:50:02(UTC)

Like Ruth, I went direct to our local hospice. Of course, on another day, I kidnapped mum and took her home so that she could be cared for properly ... not to be taken lightly but always a potential plan C

You are a funny lady and as brave as a lion. Dig deep my lovely friend and bare your teeth to get him out of that awful ward and somewhere more nurturing.

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


User
Posted 26 October 2017 08:17:39(UTC)

I am so sad to see your latest update Julie.

As usual you are in my thoughts and I'm willing you to succeed XXXX

We can't control the winds - but we can adjust our sails
User
Posted 26 October 2017 10:31:41(UTC)

Thinking of you both.

User
Posted 26 October 2017 17:27:31(UTC)

Sorry to hear of the current situation Julie. keep banging on their day. Whats the saying the squeakiest wheel gets the oil

Thinking of both of you

Bri xx

User
Posted 27 October 2017 18:06:31(UTC)
A very quick update,

Got a call this morning from the hospital ( after yesterday when he seemed much improved although very confused). To come ASAP he had been sick in the night and aspirated.
He has a lung infection and is now on IV Aunty Bs and it seems we are pretty much back to the situation we where in a few weeks ago . Albeit he is now much weaker ,
I have to be honest and the situation looks pretty grim he has been placed back on the Amber Pathway ( ie no improvement in the next 24/48hrs and they will withdraw treatment).

The Wiz has visited and as you know she is a no nonesence Gal and said even if he pulls through this episode and that’s a big IF then we are looking at maximum 8 weeks .
She said today that she would have stopped Abbi at the next visit ( I had already guessed this ) . Chemo has always been to risky and he is know way to weak to cope .
At the moment he is to weak to be transferred to a hospice so I will leave that for another day.
They are going to deactivate his defibrillator because if he goes into cardiac arrest it will fire automatically and cause him more distress.

At the moment there is only one phrase that springs to mind and that is

It’s Goodnight from Him and it’s Goodnight from Me.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 3 times
User
Posted 27 October 2017 18:24:24(UTC)

Don’t know what to send Julie. Love and strength and hope and little pain. X




If life gives you lemons , then make lemonade
User
Posted 27 October 2017 18:25:20(UTC)

I'm crying for you my friend. I hope that they are managing Trevor's pain and that he is not too distressed. And I hope that you have people to call on who can support you while you are there for him (as ever). All my love and strength to you Julie. 

Ruth

xxx

User
Posted 27 October 2017 18:30:06(UTC)

God Bless
This is not a good time

Barry x

User
Posted 27 October 2017 19:17:22(UTC)

Every fibre of my body wants to be there to take some of the strain. Every bit of my heart is crying for you, for T and for the boys. The best anyone can hope for is that the pain is managed and T doesn't fight so hard that he ends up battling against himself.

Is there someone that can stay with the boys if you need to be at the hospital? Are you okay with getting taxis or does the forum emergency 🚒 🚨team need to step in? You know that we would do anything we could to ease this for you xxx

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


Thanked 2 times
User
Posted 27 October 2017 21:56:07(UTC)

Sending my love and hugs to you and your boys

Rosy xxx

User
Posted 27 October 2017 23:49:14(UTC)

I hope they do everything they possibly can to keep Trevor comfortable and peaceful Julie. I'm thinking of you and your boys - I don't know how you keep so strong x

User
Posted 28 October 2017 00:27:21(UTC)
Always thinking of you both and wishing the best. I know that they are only my wishes and thoughts but it's all I can do. I am an agnostic so I can't say god. I put my most positive hope that the spirits be with you now and forever.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 28 October 2017 07:03:42(UTC)

Hugs

User
Posted 28 October 2017 07:28:46(UTC)

Xxxxxx

User
Posted 28 October 2017 07:53:36(UTC)
Kind thoughts and wishing for strength and peace at this difficult time
User
Posted 28 October 2017 08:00:16(UTC)

I can't put my thoughts into words.

I can only imagine what you and the boys are feeling now and it doesn't bear thinking about.

if the A team is needed I hope you will ask for their help and not struggle on alone.

Most of all, I hope for peace for Trevor, peace and acceptance for you and for your sons and also that you will remember that you too need looking after or you will not be of use to any of them.

Thinking of you all.

With my love and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 October 2017 17:04:38(UTC)

Sending loving, hopeful and peaceful thoughts to you all,


Take care
Viv
X

The only time you should look back is to see how far you have come
User
Posted 28 October 2017 17:28:44(UTC)

It seems so very inadequate just to say truly thinking of you both. I hope whatever happens in the time ahead it's as peaceful for you all as it can be.

Ray x

User
Posted 28 October 2017 17:37:27(UTC)
Can only imagine how you are feeling right now julie. Just to say you and Trevor and your boys are in our thoughts. Xxx
Debbie and Steve
User
Posted 28 October 2017 21:43:18(UTC)
Julie,

So sorry to hear your latest situation, you’ve fought so many battles and won.

In spite of what’s going on, I’ve noticed you’re still supporting others on this forum.

I hope you receive all the support you need at this time.

Best wishes,

Arthur

User
Posted 28 October 2017 22:22:06(UTC)

Julie and Trevor, you are constantly in our thoughts and prayers both here at home and in the Churches we go to.

Double xxxxhugsxxxx xxxxhugsxxxx

Chris.

User
Posted 29 October 2017 19:30:36(UTC)

Dear Julie,

I've only just seen your latest posts since I was admitted to hospital last Tuesday and only released yesterday evening. There was no patent access to the internet at the hospital.

I so hope for as peaceful as possible an outcome for you both.

David x

User
Posted 29 October 2017 19:57:38(UTC)
He is still hanging in there, mostly sleeping he does try and speak if I speak to him but it’s so garbled it’s hard to understand what he is saying . He has lots of secretions in his throat , they have given him something to help stop it building but can’t suction what is already there.
He is not in pain as such but when they try and move him he calls for his Mum.

Tomorrow is D day depending on blood results whether they will continue with the Aunti Bs or call it a day and I have to be honest I wish they had not even started them for me there doesn’t seem much point to try and get him over this for what would be a few more weeks.

Zack our youngest is terrified he is a lot like Trevor and is refusing to accept he has said that I am overly dramatic and people are cured of pca all the time so why am I being so negative.
James is accepting of the situation but doesn’t want to talk about it .
All I can do is be there for them when they need me , I can’t force them to talk and I can’t force them to accept. Everyone handles things in there own time and in there own way.

It has been a long and at times very hard 4 plus years but we are now nearing the end of our Rocky Road .
I would just like to thank each and everyone of you for being my support network in the last 4 years , you guys have no idea how much you have helped me in every way possible .
You have been my crutch in my many hours of need .
Thank You

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 3 times
User
Posted 29 October 2017 20:25:27(UTC)

Julie sending love at hugs at this very difficult time.

User
Posted 29 October 2017 20:52:08(UTC)
Sending all your family my love right now.
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 29 October 2017 21:28:43(UTC)

So sad to read these latest updates, sending all our love to your family 

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 October 2017 21:59:38(UTC)

Thinking of you and your family at this very difficult time. I hate this disease and what it does to people and their families. Xxx

User
Posted 29 October 2017 21:59:40(UTC)

XxxX




If life gives you lemons , then make lemonade
User
Posted 29 October 2017 22:17:30(UTC)

Treble xxxxhugsxxxx xxxxhugsxxxx xxxxhugsxxxx you need them now!

 
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