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Advanced prostat cancer part 2

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
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
Posted 30 September 2017 09:10:46(UTC)

Julie Trevor

Hope matters improve soon. Always thinking of you both


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)

Thanked 1 time
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
Thanked 5 times
Posted 30 September 2017 19:18:57(UTC)

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

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
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

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.

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

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

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 !

Julie X
Posted 17 October 2017 21:38:37(UTC)

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

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
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
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 .

Julie X
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