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Plan B. radium plus dexamethasone

User
Posted 02 Feb 2017 at 07:33


That's my boy!

User
Posted 02 Feb 2017 at 15:54

And my story goes on, now PSA down to 3.74 with no enzo or anything else at ,east until March check -up sonalready have a year's respite with dexomethosone. As julie says things get bad and then a few weeks on they can improve. Uncertain paths but stick in there.

User
Posted 02 Feb 2017 at 19:10

Many thanks Paul. As I recall, you were one of the first people to respond to my original frantic request for 'stories of hope' last year. Brilliant that you are still hanging on in there and providing them!


Cheers


Eleanor

User
Posted 06 Feb 2017 at 15:01

Plan B continues to go awry!


Bone pain increasing, sleepless nights and numb legs so on Saturday we rang various people who rang various people who got the message confused and, 7 hours after the original phone call, upgraded us to a blue-light emergency. Cue excited neighbours, irritated ambulance drivers and, eventually, a morphine prescription which did the trick as far as the bone pain was concerned but it seems to have taken my OH's brain away and left a small damp ball of cotton wool in its place.


Bit better Sunday - up to two small damp balls (I've just realised that I'm heading for oooo-er-Matron / Carry on up the Prostate territory here so will stop that metaphor immediately!) and bone pain more manageable.


Follow up calls from lovely hospice nurse and from the cancer hospital and then from the onco today wanting my OH to go in overnight and have another MRI scan tomorrow. Unsurprisingly he declined the offer so he's been told to up the Dexamethasone dose from 0.5 to 4mg immediately, and take another 4mg tomorrow morning. Then off for the scan in the afternoon.


And even more excitement from my brother (who has Amyloidosis Myeloma and a host of complications) who collapsed yesterday and ended up in a chair in A&E most of the night. Back home now and ok. I've passed the remains of the gin bottle on to my sister-in-law.


Oh to be bored witless, sitting around in a fog of tedium with nothing to do except watch the rain and pluck stray nostril hair.

User
Posted 06 Feb 2017 at 16:32

Oh Eleanor, I love your wit. Lets face it, humour is something that can help keep us sane in difficult times. As my dear old Mum used to say, although not in the context of coping with incurable disease:


"I'd rather make you laugh than make you cry".


The one good thing I've taken from your post is that all the various medics seem to be right on the ball in trying to help diagnose and treat the problem.


I hope you have better news soon.


David

Edited by member 06 Feb 2017 at 16:34  | Reason: Not specified

User
Posted 06 Feb 2017 at 18:09

Originally Posted by: Online Community Member


with nothing to do except watch the rain and pluck stray nostril hair.



OMG Eleanor, plucking stray nostril hair, that is so 19th century!


What you need is a personal trimmer. Mrs_C has one and uses it to remove the hairy bits from my ears, trim my eyebrows but only after she's ripped out the grey ones with tweezers (she's got some 19C in her) and then tackles my nasal hair.


Now the first two of these treatments I can tolerate but then she gets a strange look in her eyes. Mrs_C can be quite scary. I've noticed that when she gets to my nasal hair she starts to give a passable resemblance to Laurence Olivier in Marathon Man. Come to think of it I've never seen Mrs_C and Laurence Olivier in the same room, could they be one and the same? Anyway, Mrs_C seems to think my nasal hair is rooted some two inches up my nostrils and proceeds to attack the source of the problem with a vengeance. I get worried that she's going to perform a sinus widening operation without the use of anesthetic and shrink back in my chair. Mrs_C growls "come here you, sit still, it won't hurt". At least, so far, she hasn't said "Is it Safe?".

Edited by member 06 Feb 2017 at 18:15  | Reason: Not specified

User
Posted 06 Feb 2017 at 18:31

Blimey! I thought I was bad enough!

I've cut John's hair for the last 47 years (the last time he went to the barbers was the day before we got married) and as he's got older his eyebrows have become "hairier" in that they have very long wiry hair growing randomly and the outside of his ears are also hairier

My payment now for the haircut is that I am allowed to trim off the long random hairs on his eyebrows as well as those horrible stiff ones growing from his ears!!

I do at least leave his nose hair alone!!

We can't control the winds - but we can adjust our sails
User
Posted 06 Feb 2017 at 19:06

Strikes me you need the occasional reign of terror to keep you in check! And it's probably better than her having a passing resemblance to John Hurt in Elephant Man.


Ex

User
Posted 06 Feb 2017 at 19:29

You don't know the half of it Eleanor!

You wouldn't believe the anguished howls following the extraction of a few eyebrow hairs. What a wuss! And all this personal grooming was done at his request in an effort to look younger!

I should also point out that my resemblance to Laurence Olivier is about as close as David's resemblance to Dustin Hoffman - and David is 6 foot 5!

Anyway, one up side of the chemo is that none of the bits that used to require attention are as hirsute as they used to be so the need for such personal services is thankfully much reduced.

Linda

User
Posted 06 Feb 2017 at 21:14

As I suspected! You are clearly a saint...http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif


 

User
Posted 06 Feb 2017 at 22:45
Oh Eleanor,
This post is almost a replica of where we were at Xmas and I can feel your panic and worry . Fast forward one month with the second infusion down and the slow relaease morphine well and truly kicking in and we are up and running so don't give up just yet.
Over Xmas I was pretty much where you are i.e. Thinking the fat lady is about to sing , wobbly legs , fuzzy head , no energy, lack of appetite, and that was just me 😉 Only joking.
Keep going this pca journey has so many twists and turns so many times I have wanted to say stop the bus I want to get of but we cant unfortunately we have a one way ticket and the return is a single.
4 years in May for our Cancerversay so as Trevor would say ! It's life Jim but not as we know it !
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Feb 2017 at 23:52

Hirsute .... great word Linda, and supreme wifely efforts. Respect!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Feb 2017 at 23:56

Eleanor, you are doing just great even if it feels like you are wading through treacle. Don't forget to look after yourself in the midst of all this; someone has to care for the carer and Julie is a terrible role model in this respect. Fingers crossed that you see an upturn soon x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2017 at 00:04

Too late! I am already using her as a role model. If I can work out how to customise my profile picture I'll post a shot of my hairy legs - grown in her honour.


But seriously, you lot are looking after me beautifully Lyn...makes such a massive difference.


E


x

User
Posted 07 Feb 2017 at 19:09

Hoorah! It's not spinal chord compression so we can all relax again and get back to the nostril plucking (assisted by Mrs C's impressive array of techniques).


There's an inflammation on the spine and some shifting of something or the other, perhaps due to the bone mets or maybe general wear and tear, but it's nothing serious (a relative term I guess!). The morphine has sorted the bone pain and the steroid dose has been upped from 0.5 to 4mg per day to deal with the inflammation itself. That's lead to my OH being massively alert and massively dopey all at the same time. Strangely endearing (provided it doesn't last too long).


And we might just make it to the pub tonight. Thanks for your cheering support you lovely people.


Eleanor


x

User
Posted 07 Feb 2017 at 22:45
Oh wow Eleanor,
So happy to read this, its almost a mirage image of Trevor's last month ( minus the nose hair) . Trevor has just had infusion no 3 today .
So so happy for you both ! Yay let's break out the gin!
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Feb 2017 at 23:26

Brilliant

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2017 at 23:54

Already broken and drunken! Will do it again tomorrow in a toast to all of us.


E


x

User
Posted 08 Feb 2017 at 04:43

There are some truly exceptional men on this site. Well done Eleanor

We can't control the winds - but we can adjust our sails
User
Posted 08 Feb 2017 at 07:05

As Tony the Tiger says:


Greaaaat!

 
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