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Plan F. As you were

User
Posted 13 Mar 2017 at 21:34

Thank you Lyn - what an absolutely amazing woman Julie is to be worrying about me in the middle of blue light emergencies. Wish so much there was a magic wand or just something useful that I could do. Life is so thoroughly unfair.

Please do send her my love and hugs and thanks. I'll be thinking of her and Trevor. Hoping for another miraculous turn-around.

Love

Eleanor

xxx

User
Posted 25 Mar 2017 at 11:48

Well on the good side the sun is shining and the daffs are out in profusion and we're off for a picnic lunch shortly.

Then on the entirely rubbish side, I learned yesterday that the PSA is up from 236 to 303 in just a fortnight. Maybe not such a surprise since there's been an increase in bone pain over the past two weeks leading to yet another out-of-hours visit at 3am last Sunday. That led to the MST dose being upped to 20mg every 12 hours and Oramorph being thrown down his neck at frequent intervals (and the return of the dreaded constipation goblin). Plus a 'just-in-case' box of medical goodies is now sitting in the kitchen. Which is very sensible but the fact that we need to have one is really not cheering me up at all.

The consultant had hoped that the bone pain was a 'blip' due to a 26mile bike ride he'd been on and I'd been hanging on to that possibility like a limpet. But the PSA rise suggests otherwise.

So far this headclucking cancer has sailed through HT, chemo, dexamethosone, RT, zometa, abiaterone and prednisolone. Haven't tried Radium 223 yet - the onco went off that plan when he realised how fragile my OH's spine. But I'm not sure if there are any more options. Will find out when I phone them next week.

And just to put the tin hat on it, this morning he had another vicious bout of bone pain.

BUT, the pain has subsided now, he's dosed up to the eyeballs, and has popped out cheerily to get the papers so that we can have plenty to rant at on our picnic. What a star he is.

Thanks for all the recent cheering updates from you fellow battlers - helps to lift the gloom no end.

E

x

User
Posted 25 Mar 2017 at 23:32
Just tapping in to make sure I get any updates Eleanor. Hope you had a lovely picnic in the sunshine x

I'm so sorry about the PSA - hope the oncologist comes up with a brilliant new plan when you speak to them x

User
Posted 25 Mar 2017 at 23:44
So sorry to read this E,

T has had a rise in PSA on the last onc visit and even though we have been up and down so many times it is still a disappointment so I know where you are coming from on that one.

I have everything crossed that the pain gets under control soon there is nothing worse and it send me into a spin every time , you just feel so helpless.

Keep going girl , the only way is forward.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Mar 2017 at 02:18

Eleanor,

I so want to help you, just like everyone else on here, but I'm powerless. All I can do and will do is hope for the best for you.

David

User
Posted 26 Mar 2017 at 06:21

So sorry, Julie.

All I can tell you is what I'm being said at present time: there are many solutions and research nowaday on PCa.

Did you enjoy your picnic? I hope so.

One feels powerles, as David says above, when they can't give more help other that saying "sorry" or "keep hopefull".

Big hug.

Lola.

User
Posted 26 Mar 2017 at 06:47

Hi Eleanor
So sorry for you both having reached this point. I just hope the pain gets properly managed which I think is the most important thing for both of you. Here's wishing the Onco decides something positive.

If life gives you lemons , then make lemonade

User
Posted 26 Mar 2017 at 09:13

Thanks all for your kind thoughts and good wishes. Means a lot.

All's cheerier today. Yesterday's picnic was glorious and pain-free; the sun's out again today and he's feeling ok.

Hope it's shining on you lovely people too.

E

x

User
Posted 26 Mar 2017 at 09:41
A couple of years ago I realised in my own life that I had to live for every day, if it's a good one then go for it, if it's a bad one, try to make it a good one in some way and go for it. I am so glad that you both seem to be going for it whenever you can, I hope that you have many more days where the sun shines and you both get out there. Always thinking about you. Take care, Kevin

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 26 Mar 2017 at 21:41

A few lines from Robert Frost which I find calming and helpful at this time of year:

Oh, give us pleasure in the flowers today,
And give us not to think so far away
As the uncertain harvest; keep us here
All simply in the springing of the year.

Marje

User
Posted 26 Mar 2017 at 23:12

Thank you Marje - so beautiful and so apt. Will do my best to hang on to the sentiment. It's a good time of year for hope in the broadest sense, even if there's not much basis for it at a personal level. And today was a pretty good day with sunshine and family doing three generations of mothers' day and double helpings of pudding. Plus Welsh choirs on the telly this evening. Lots to be joyful about.

Hope the verse is comforting to you too.

Love

Eleanor

x

User
Posted 26 Mar 2017 at 23:16

Thanks for your continuing support and humour and understanding Julie. You are really so special.

Love

Eleanor

xxx

User
Posted 29 Mar 2017 at 23:09

I've been thinking about all your kind messages and particularly the poem from Marje and the message from Irun. And I've been reading through all my posts since I joined the forum last June/July. It turned out to be a really positive move.

Re-reading the story so far brought back all the moments of worry and pain and panic and all those weeks of my dear old OH feeling sick and hopeless. Doesn't sound very cheering but it helped me realise that on a day to day basis things are actually so much better now. The bone pain is under control, the sickness is generally low, he's still able to enjoy sitting in the park and cycling to see the cormorants and the sea and friends and ranting at the telly and a pint. Tonight we went to see a great blues singer and caught up with Corrie; this weekend we are meeting up with some good mates for dinner, and next week we are off to a classical concert. Plus our care team are really doing their best for us both.

In fact, if I didn't know about the recent PSA rise and the various rubbish test results I'd probably be feeling pretty good about life. So I've decided to just forget about the bl**dy stats and appreciate every day that I get to spend with him and every day that gives him some happiness, however fleeting. In spite of everything we are so lucky. Lucky to have such a good life and loving family and friends, and massively bogglingly unbelievably lucky to have somehow found each other. Seems churlish to complain in the face of that glorious fact.

So, with thanks to Marje and Robert Frost, I proudly unveil Plan G: Here I am and here I will attempt to stay, 'all simply in the springing of the year'. And bugger the uncertain harvest.

E

x

User
Posted 30 Mar 2017 at 00:13

What a phenomenal force you are turning out to be, E. Thinking about you x

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

User
Posted 30 Mar 2017 at 04:31

Eleanor,

You're just like my Mum.

My Dad was a depressive, there were lots of good things about him but the depressive side I try not to emulate.

My Mum was an optimist. If you had asked my Mum whether the glass was half full or half empty she would have said "What on earth are you talking about? Can't you see? It's overflowing".

User
Posted 30 Mar 2017 at 05:26

Elaine always says ' god loves a trier ' and just carries on regardless and gets on with things. I admire that in you both. Just enjoy x

If life gives you lemons , then make lemonade

User
Posted 30 Mar 2017 at 07:53

What an example you set for us all Eleanor :-) x

User
Posted 30 Mar 2017 at 11:53
An inspiration!
User
Posted 31 Mar 2017 at 21:38
Hi E ,

There was a guy on here a good while ago who not only touched my heart but also someone that I had huge respect for he whent by the name of TopGun ( look him up ) his mantra was Life is for Living and my goodness he did that he is a bit of a legend on the forum .

When the chips are down and we get the worst ever news life can seem as if the sun will never shine again but if we can somehow manage to peek out from the quilt over our heads we see that in fact the sun is shining and life continues all around us. I am so glad that I peeped out from under my quilt because otherwise what a waste the last 4 years would have been.

Yes some days have been poop but other days have been brilliant and yes that huge C is always on our shoulder but one thing I have learnt along this journey and yes TopGun I hear your message daily 😉Life is for Living .😍

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Apr 2017 at 05:54

I just hope that if ever I am in the situation that you have Eleanor, or the other brave women on here (whether you consider yourselves brave or not - I do) that I have the strength and the purpose that you all show.

I am so pleased that you are gaining (and draining) every last little bit of joy out of each day with your lovely man.

Mine is my soul partner too. Having been together 48+ years I know him inside out and he is always with me. I'd like to think that I will have your strength to fight his corner as you have for your man

Best Wishes

Sandra

************

Edited by member 01 Apr 2017 at 07:50  | Reason: Not specified

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