Advanced prostat cancer part 2

User

Posted 21 Apr 2016 at 22:39

Trevor's PSA is a celebrity in its own right Julie, he is such an amazing man. I was touched by Si's comment about you, him and Mo, all in the same boat and very different outcomes. Why is this? Why isn't it investigated in case it's something of use to future cases, same as us, how come someone with a G10 is still keeping it under control 5 years later, there must be something to learn.

Anyway, enough of that, big hugs to you and your family. It's a scary time but I'm a great believer in the time chosen to change treatment being a great benefit, as long as the time is right.

Big love to you Julie xxxx

User

Posted 21 Apr 2016 at 22:39

Oh, I told you she would pull something out of the bag for Radium - fingers crossed that the criteria haven't changed (again) by the time you need it. A reassuring snippet for Glen too - a good day for everyone except Prince then

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

User

Posted 21 Apr 2016 at 23:51

You are so right DM this disease is so varied from man to man ,Trevor and Si's stats are so similar but poles apart in there PSA . I totally agree we should volunteer them for testing. Between them they well may hold the answers and at the very least Ness and I can have two weeks in Tennerife whilst they are away😆

Lyn the Wiz is going to keep a close eye on the Cancer drugs fund and she said even if they change it that it would take 3 months to come into force and she would let us know Asap. She is still very wary of Trevor having chemo.

So life carries on as normal well normal for us, the boys have basketball practise every Thursday so of they all went with Trevor driving leaving me at home with the hounds, all was going well until Tulip (Bull Terrier ) spotted Dave ( the cat ) in the field and decided she was going to leap the fence to get to him. I have a sneaky suspicion that she was planning a spot of ABH, although Dave isn't a celebrity I did feel his days could be numbered.😵.

So my first thought was get all of the other dogs in before I opened the gate , then I ran to catch her this wasn't easy as you can imagine a very unfit nearly 60 year old chasing a Bull Terrier. 😤I was onto a loser before we started. Luckily she had jumped onto the patio and that is fenced I thought yes I am in with a chance and Dave will live to fight another day.

Of course once I had caught her my next dilemma was how was I going to be able to walk her without a lead passed Dave who was still sitting there like a sitting duck . (Cats can be so stupid sometimes). So daft idea number one was take the belt of my skirt and use it as a lead. I managed to get it of my skirt one handed because I am hanging onto her collar the whole time. I even managed to get it over her head, I then realised what a ridiculous idea this was it was way to flimsy to hold a Bull Terrier. Know my skirt is round my ankles and I have to hold my skirt up with one hand while holding Tulip with the other.

This is when smart idea number two comes into play. I thought if I can man handle her to the conservatory door I can force her in that way and we don't have to go past Dave who is still sitting there but now with a very smug look on his face.😹. Of course that would have been way to easy, because MRs ocd has locked the conservatory door from the inside.

So it was at this point that I spot the window slightly ajar, I will admit I did hesitate mainly because it is my brand new conservatory and dogs are not allowed in there but being an animal lover the life of my cat won over the no dogs in the conservatory rule. So hence I know this has been a long story but this is how I came to be chucking a Bull Terrier through an open window while my skirt was round my ankles.😵. Just in case some one spotted me and it goes viral no animals were harmed in this escapade.

Who says my life is dull..

BFN

Julie X

Edited by member 22 Apr 2016 at 00:06 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Apr 2016 at 00:18

God I love you so much xxx

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

User

Posted 22 Apr 2016 at 01:05

Love you to Soren X 🤓

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Apr 2016 at 01:44

Hang on in there Julie (and hang onto your skirt too!). All the while you can laugh you can keep on going.

Rosy x

User

Posted 22 Apr 2016 at 06:51

are we sure this is not a scene from a carry on movie, made me chuckle whilst having my brekkie, what a fun start to the day, we may have problems but boy their is some right loonies on here lol

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 22 Apr 2016 at 07:42

As ever , thanks for the update followed by the mania. You should meet my Psychiatrist. She's a lovely lady and you'd get on well. But Trevor needs you at home so I guess it's best you don't visit.
Best wishes
Chris

User

Posted 22 Apr 2016 at 13:15

Hi Jullie,

Love hearing your doggie adventures. Havnt posted much recently. You guessed it !! Have Border Collie number four, Blossom's half brother called Sparkle, fourteen weeks old ! That's it, no more dogs !!! Well would rather do the things I love while young and fit enough. never know what's round the corner. Great talk at Local PCa Support Group last night by one of our truly brilliant oncologists. Never realised how good Bristol oncology centre was for clinical trials ! Love to you, Trev and dogs,

Fiona. x

User

Posted 22 Apr 2016 at 15:26

Hi Julie

Lovely to read your updates, am sad to still hear psa rising though good to hear it was a smaller rise and what brilliant news to know radium 223 can be an option for T.

What an inspiration you are to others. Even when many odds are against you,you still divert your energies and thoughts to all the other wonderfuland maybe mad things that are happening in your life.

Some of us will walk over mountains, some will run marathons, some enjoy sunshine breaks away,the more sensible of us will simply enjoy a family gathering, some do more dangerous ski activities and others, maybe only a few,walk their dogs with skirts round their ankles!! Let's keep our lives full of fun,laughter and madness despite all our troubles.

Take care Julie

Lesley xxx

User

Posted 22 Apr 2016 at 16:36

Hi SS

Have been on a little adventure which has left me off the air for a few days. Brilliant news about the Wiz and her ongoing support. Fantabulous!

Now your story of Tulip and Dave had me laughing so much. The roller coaster pauses for a moment and you come out with one of your gems! !

Love you crazy lady, will call when I get home on Tuesday.

Xxx

User

Posted 22 Apr 2016 at 18:59

I love reading your posts, you really should consider writing as a hobby or career. You are one in a million Julie xxx

User

Posted 22 Apr 2016 at 19:31

Yes Devonmaid I agree , but she's more Taca Dahl than Roald Dahl to be honest , but very funny and lovable. Wishing you the best Trevor and Julie X
Chris

User

Posted 04 May 2016 at 22:38

Well my goodness hang on to your hats Guys it is our Cancerversary 🙃3 years since diagnosis. Can you believe it ? I certainly don't I still have to pinch myself.

The forum has given me so much comfort over the years from my first terrified posts since then you have all had to put up with my down right silly posts my heart searching scared posts . I thank you all every single one of you.

So here we go I am going to do this at warp speed because that is kind of how it seems to have gone over the last three years.

Nee Naw- ( ambulance arriving)

This is for newbies , oldies and just about everyone in between.

Starting PSA this is our claim to fame😅 I do exaggerate and say 13000 but it was way lower than that 12940 (gulp)

Couldn't walk or stand up unaided

Started treatment

Asthma attack (Nee Naw) 🤒

Heart attack (Nee Naw) stents fitted,🤕

Asthma attack🤒

Stroke (Nee Naw)🤕

PSA dropping 🙃

Wow PSA down to 15🤗

Heart attack (Nee Naw) more stents fitted😱

Pneumonia (Nee Naw) 😷

PSA rising 😞

Abbi and steroids 😐

Wow Trevor is now not only walking but climbing on the roof😵

Ok so PSA up to over a 1000 but the good news is he is looking good and feeling good and if we could just get him down from the roof then life would be perfect.😛

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 May 2016 at 22:50

Amazing - well done to the both of you! If sheer determination determined the progress of PC you'll still be posting on your 30th cancerversary.

How about getting up on the roof with Trevor and a bottle of bubbly to celebrate? But hang on to your skirt!

Rosy x

User

Posted 04 May 2016 at 23:11

I say leave him up there with some turmeric - seems to be working so far!

Three years ... 3 Christmas days, 3 lots of birthdays with the boys, at least one big family reunion, Lord knows how many puppies, rats and ride-ons, 36 months, 1098 days, 26352 hours of worrying, and being grateful, and fearful and brilliantly strong. Happy canciversary lovely xxx

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

User

Posted 05 May 2016 at 05:31

hi Julie
congrats on the 3 years, your constant tales are a reminder that anything is possible, The Tales of Trevor are great source of encouragement thank you for letting us all share it with you

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 05 May 2016 at 06:01

Julie,

Three years and still going despite everything. That's fantastic and I wish you both many more . You're the one that introduced tumeric to our diet, so thank you for that. I just hope that it has the same benefits for us ! Your encouraging posts are really inspiring .

Best wishes ,

John

User

Posted 05 May 2016 at 07:21

Many heart-felt congratulations to you and Trevor , nutty lady. You're an inspiration. You remind me of the funny ' friends ' episode where something really serious is happening and in Joey's head there is just a nah nah nah.
I don't like your new look very much , and has Trevor been hitting you again ........?
Bring back that utter vision in the blue dress x

User

Posted 05 May 2016 at 14:32

Julie and Trevor,

CONGRATULATIONS on 3yrs of an incredible fight.

It's great to hear Trevor is looking and feeling good despite the scariest roller coaster ride imaginable.

Most of us would have fallen off it (me included), and yet through it all your marvellous sense of humour has shone like a beacon.

You're both truly inspirational, and we wish you many more anniversaries.

Thank you for cheering us up with that crazy humour. That has helped others more than you know.

Warmest wishes,

George
x

B2PCa

User

Posted 05 May 2016 at 22:05

I absolutely know that Trevor's secret weapon is a lady called Julie. He's been through loads of stuff this last three years and is made of strong stuff that's for sure. He's got his children, his Julie, his menagerie and his ride on. Life doesn't get better than this (thanks Masterchef). Wonderful Julie, here's to the next three and why not?

Lots and lots of love

Devonmaid

User

Posted 05 May 2016 at 23:29

Julie and Trevor, what can I add, 3 years with those figures!!!
WELL DONE
And your doggie tales, weeellllll.

All the very best for your next milestone.

Chris.
xxxxhugsxxxx

User

Posted 06 May 2016 at 00:26

Hi Julie & Trevor,

Congratulations on reaching three years in spite of all the problems, health and otherwise. You are both an inspiration to me and everyone on this site.

Thank you so much for your humour and your positivity even when faced with challenging situations.

Here's to another three years!

Steve x

User

Posted 06 May 2016 at 20:31

Milestones are always worth celebrating, they remind us that we are on a journey and that time does go by, sometimes remarkably quickly. In between we deal with the ups and down and hope that our OH won't fall off the roof though no doubt you have a sandpit of turmeric for him to land in. More time to come, more memories to create, more ups and maybe some downs. But you carry this off with humour and so much fortitude. Keep smiling, Julie!

User

Posted 06 May 2016 at 21:02

Julie

It's hard to imagine you could do all that in three years and still have a sense of humour. Keep going girl.

Thanks Chris

User

Posted 06 May 2016 at 23:51

Happy Third Cancerversary - amazing! x

User

Posted 07 May 2016 at 14:50

oh my you are probably wondering if I have gone deep silent and utterly covert?

Not at all and I am shocked I missed your cancerversary but various things have kept me busy and actually unable to post on the forum (thank the Lord for that say some!) Happy 3rd and many more to come.

You and I have been through much together and I still cheer every time something good happens for you and Trevor.

I really think you should build a slide from the roof straight down to the seat of the ride on mower a sort of Wallace and Grommit invention. In fact I think Nick Park could do a lot worse than to make a W&G film based on your crazy life using your sense of humour for the script. It would be a real blockbuster.

I see Chris J is not such a fan of your Tulip picture complete with black eye, knowing what I know about that daft pooch I think he has a point, your swimsuit Belle certainly would have got Mick's vote (sorry Tulip)

You are an awesome Woman with an amazing family and a Tumeric Prince of a Husband with more resillience than a super bug.

Love you loads

xxx

User

Posted 09 May 2016 at 10:24

Good news best medicine humour that's how we dealt with Eric.

You and your skirts remember about 2yrs ago you were walking about with your skirt tucked in your nickers what a woman.

Sending you both best wishes and here's to many more good times.

Carol xx

User

Posted 09 May 2016 at 13:34

A very happy cancerversary to you both. I too love reading your wonderful humerous scripts.Wishing you both well.

Lesley xx

User

Posted 12 May 2016 at 08:01

I thought Trevor might like this trend for turmeric latte! See link http://www.theguardian.com/lifeandstyle/2016/may/11/turmeric-latte-golden-milk-cult-following-alternative-coffee?utm_source=esp&utm_medium=Email&utm_campaign=GU+Today+main+NEW+H+categories&utm_term=171728&subid=7787429&CMP=EMCNEWEML6619I2

User

Posted 12 May 2016 at 22:20

Paul thank you, that is one for the breakfast menu. 😜It sounds so scrummy I might even try it myself.😋

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 May 2016 at 21:36

Firstly thanks Dave K for the life expectancy calculator it is I am sure very informative , I have to admit I have googled many times PSA of 13000 life expectancy and according to the results Trevor has been dead for at least 2 years, so every morning is a bit of a shock😵 Talk about Groundhog Day.

Honestly and seriously this isn't a disease that I think anyone can predict outcomes on. It is so varied from one man to another. I remember my first desperate posts with Trevor's original PSA reading , of course I thought it was pretty high but I had no idea quite how high it was and everyone was going very gently around what I was asking, I could feel everyone thinking Julie check his pulse.😳

Not only is he very much alive and kicking he is looking and feeling good .

OK so scores on the doors are not so good but they are all just numbers ,

So Wiz visit today and

PSA up from 1,081 to 1,336

ALP up from 177 to 218

We are staying on the Abbi tabs for another 4 weeks , new bone and MRI scans scheduled with a review in another 4 weeks. Our moto is and has always been tomorrow is another day, over the last 3 years one thing we have learnt is that Cancer is not a death sentence it is a LIVE sentence.

So in the words of the two Ronnies it is goodnight from him and a goodnight from me.

Love you all.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 May 2016 at 01:50

Hi Julie,

Your posts always make me smile even when the news is not what you would want. Trevor is very lucky to have you. You help, not only him, but many others on this site with what you write and your kindness and love for your family is clear to see.

Just wanted to say thank you for all you do for all of us with your posts.

Steve x

User

Posted 18 May 2016 at 05:16

morning Julie
tales of trevor continue, what ever it is you are doing for him it would be good if it could be bottled and passed

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 18 May 2016 at 07:28

Julie,

I cannot believe just how positive you've been throughout everything you've gone through. Trevor is a very lucky man. Thank you for all your updates and especially for the humour you're able to share with us. This is a horrible disease but sharing what you have experienced helps so many of us.

Kindest regards,

John

User

Posted 18 May 2016 at 08:33

Keep it up Julie, hard as it is.
You're doing a wonderful job. XX

We can't control the winds - but we can adjust our sails

User

Posted 18 May 2016 at 08:59

Live sentence....i dont like it....i love it. As always Julie your humour, determinaton and fortitude jumps right out of your posts and makes a bad day better

Keep doing what you are doing

Bri xx

User

Posted 18 May 2016 at 10:31

Julie
I always find your posts so inspiring, make me smile and give me hope.
Thank you

Paul

User

Posted 18 May 2016 at 10:48

Julie, like Bri I love the "live sentence" and am gonna steal that both mentally and use it in some of my blogy things, hope you don't mind. You and Trev are just brill for making me doubt the naysayers! Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 18 May 2016 at 10:52

The key part of what you say is the living part just like Topgun,s life is for living. The one thing we incurable sufferers have in common is that making the most of life is a must. We never know the timetable, can never know the timetable. So much better to keep going, enjoy every moment we can and yes the road is rocky as another old friend stated, but we will travel this together. Not great news but you will approach it as you always do with humour, optimism and fortitude, who can argue with that!

User

Posted 18 May 2016 at 11:57

are you sure back then when Trevor's PSA sounded like a medieval battle date that he wasn't abducted by aliens and returned before you woke up next day? I feel a little conspiracy theory brewing here. One of these days the Wiz will fess up and tell you his blood contains Klingon or something!

I too love your choice of phrase "Live sentence" no point in sitting watching the grass grow under your feet , especially when you have a ride on mower at hand! There are so many old sayings aren't there that tell us to live our lives whilst we can and I agree with them all.

I suppose the Wiz is looking at and listening to Trevor and deciding, that as he looks and feels good, you may as well keep going until any contrary medical reason becomes evident.

Your 3 years on this forum have been full of the widest range of emotions. Fear, anxiety, hope,joy, compassion,etc etc but all expressed with wit and a humour that inspires others. Even when things have been terribe in your own situation you have always been there for others, You are simply a breath of fresh air and I am so proud to have you as my friend.

speak soon

big hugs and loves as always

User

Posted 18 May 2016 at 23:22

Oh Julie

A breath of fresh air, yes yes yes, that's you girl! No matter what you continue to inspire us with your charm and joy for life. We saw our urology consultant today and he told us that good morale increases the immune response and I think I do agree with that. I think Trevor, Si and John have fantastic immune systems - if only we could bottle it eh?

We are off for RT planning tomorrow, whoever thought that John would have RT on the prostate, we are very positive about it and hopeful of excellent results. I think your enthusiasm for life, even in its current form, is catching

With big love

DM xxxxx

User

Posted 20 May 2016 at 18:43

Hi Julie

I still manage to get on every now and then. Work is manic

You have a great onco to still be on Abby is great news many oncos would have stopped it by now but yours is right on the money

Really hoping we can get across to see you soon maybe half term

Everyone here sends there love and the girls send there love to the dogs

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 01 Jun 2016 at 23:22

Guys I haven't done individual thanks but a huge and massive thanks to you all , your replies are so Heart warming and make me feel very humble I also know that many read my ramblings but don't comment. So for those that do comment I just love ya, for those that don't comment it's ok you can just do a smiley , lots of people don't know what to say and I get that I understand.

So this is a mid way catch up , I have been trying not to do mid way catch ups because they can get a bit well boring I suppose🤗 Sorry just laughing at my self how the Feck can our lives be boring.

So Trevor and the boys decide to go to there annual meeting at Santa Pod , I have never been so this is a women's interpretation of what is my worst nightmare , loud cars , drag racing, and not a burger van insight, so I decide that I would stay home and do my nails.😍

Next thing is I get a phone call to say T has slipped down a grassy slope with I say with his fold up chair still over his shoulder , he has skidded to a halt and then been helped up by his 6ft 3 inch nephew , GLen he is just the sweetest lad but at 6ft 3 and as black as your hat not quite what you would call a paramedic. Trevor was a bit dishelved but otherwise ok. So my nails are chewed but not painted .

MRI and Bone scan completed results on the 13 June

B FN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jun 2016 at 07:43

Well done Glen I say !! He must have been very worried just helping him up in case he broke him.

Nails are nails. As long as you still have some for chewing on the next time Trevor decides slalom down a slope eh !

We can't control the winds - but we can adjust our sails

User

Posted 02 Jun 2016 at 09:21

Julie

I think you ought to enter Trevor in the next Winter Olympics slalom event

Arthur

User

Posted 02 Jun 2016 at 12:40

Keep going girl and 😃😃😃😃😃😃.

Thanks Chris

User

Posted 02 Jun 2016 at 17:42

Your lot don't do things by halves do you!

Keep smiling, keep up the humour, no, I'm one of them who read your words of inspiration, stupidity, nonsense, and lovely sentiments too, but don't often comment, but I'm here if you need me!

Chris. XxxxxXxxxxX

Ps, haven't read much about the dogs lately?

User

Posted 02 Jun 2016 at 20:28

You are the brightest light in this forum Julie, long may you continue writing about the exploits of the lovely Trevor. Keeping us all amused and sometimes on the edge of our seats.

Love you!

Allison

User

Posted 03 Jun 2016 at 14:08

now I kind of know Trevor a little bit by now, so I am guessing a wheelchair would be absolutely out of the question until really, really desperate (even one with go fast stripes, mirrors and flags like Topgun's scooter) So I have a cunning plan ....

Next time he has the bright idea of taking the lads to a race meeting or a similar grass slope type of event, of which I can list a few just in case you need help visualising ...

The Epsom Derby

rock concert at MK Bowl

party in the park

Wimbledon

Queen's garden party

OK so you are getting the scene now??

well that lovely tall nephew and your equally tall Eldest son, ably assisted by your less tall but equally gorgeous younger son, should load the ride on mower in the back of the van. Then T has his own transport at the event and can be useful all at the same time!!! When he goes to HRH's gaff he can take Tulip to grrrrr at the corgis xxxxxxxx

Love to all of you as always

xxxxx

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