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Plan F. As you were

User
Posted 23 February 2017 17:36:55(UTC)

OK so it's now Plan F. Plans A-E inclusive have been shredded and we have a new corporate vision going forward (or possibly going backwards, or if I'm feeling wildly optimistic, one step back, three steps sideways and trip over the hamster in to a small but very muddy ditch where we lie for a while waving our legs helplessly in the air). PSA is up again, dear old OH feels absolutely crap and permanently sick (a bigger problem in terms of quality of life than the b cancer) and options are narrowing.

So Plan F consists of Abi and Prednisolone (started today) plus Larazopan to help with the nausea/stress and Omeprazole to line the stomach plus an acupuncture appointment to maybe help with the nausea plus a double appointment with John the gastro man to a) check for delayed stomach emptying (a rare side-line of PCa apparently) and b) an endoscopy to check for lord knows what. Plus the HT continues.

Can't fault them for trying. And I've had reflexology and counseling this week courtesy of my local hospice. The NHS is awesome.

Will let you know if any of us manage to get out of the ditch. Aiming for a turn-around by Friday when there's a singsong at the local, but the clever money is probably on the hamster.

E

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User
Posted 26 March 2017 21:41:07(UTC)

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

Thanked 5 times
User
Posted 12 March 2017 16:54:27(UTC)

I have a very dear friend who battles (magnificently) with deep-rooted depression and anxiety. She introduced me to the term 'horizon scanning' in this context. It's a bit like being a human meerkat - constantly on the alert for what might go wrong next, frantically trying to put stuff in place so whatever-it-is doesn't happen, and in a permanent state of stress. Which leads to emotional and physical exhaustion and more stress and more anxiety. Fun it ain't!

I realise that's been our lives for the past year or so - and reading your posts and profiles suggests that we are all at it most of the time. Which makes the courage and resilience and humour and determination and concern for others that's in plentiful supply on this site even more gloriously heartwarming. So, not for the first time, thanks to you all.

AND an update...

I have just had a 48-hour period without horizon-scanning. Nothing to do with the empty gin-bottle and chocolate wrappers in the bin; nothing to do with the daffs and the rugby (not the England Scotland game obviously!) and the sunshine and a day with the grandkids, though that all helped. My 48-hours without a single peek at the horizon is down to my fabulous, brave, massively annoying, kind, clever, impossible OH having had two days with minimal nausea and minimal bone pain. Which also means that he's had two days of feeling cheerful and hopeful and we've started to discuss holidays and booked tickets for a pile of concerts in April and May. Bl**dy brilliant and then some. 

E

xxx

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User
Posted 23 February 2017 17:36:55(UTC)

OK so it's now Plan F. Plans A-E inclusive have been shredded and we have a new corporate vision going forward (or possibly going backwards, or if I'm feeling wildly optimistic, one step back, three steps sideways and trip over the hamster in to a small but very muddy ditch where we lie for a while waving our legs helplessly in the air). PSA is up again, dear old OH feels absolutely crap and permanently sick (a bigger problem in terms of quality of life than the b cancer) and options are narrowing.

So Plan F consists of Abi and Prednisolone (started today) plus Larazopan to help with the nausea/stress and Omeprazole to line the stomach plus an acupuncture appointment to maybe help with the nausea plus a double appointment with John the gastro man to a) check for delayed stomach emptying (a rare side-line of PCa apparently) and b) an endoscopy to check for lord knows what. Plus the HT continues.

Can't fault them for trying. And I've had reflexology and counseling this week courtesy of my local hospice. The NHS is awesome.

Will let you know if any of us manage to get out of the ditch. Aiming for a turn-around by Friday when there's a singsong at the local, but the clever money is probably on the hamster.

E

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User
Posted 23 February 2017 20:15:35(UTC)

Originally Posted by: Online Community Member

Can't fault them for trying. And I've had reflexology and counseling this week courtesy of my local hospice. The NHS is awesome.

Indeed.

Please God, if you're there, let Plan F work. If ever anyone deserved some respite it is Eleanor and her OH.

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User
Posted 23 February 2017 20:51:14(UTC)

Aw thanks David! That should do it!

x

User
Posted 23 February 2017 20:52:44(UTC)

Eleanor I am so sorry to read this. It seems that your beloved is one of those for whom nothing really works for long, no wonder he is low.

Deep breath and I hope this is taken the right way. Have you thought about getting an application in for benefits? I am sure you are not at the 6 month stage but some specialists and hospice staff are happy to sign off the application even when the prognosis is longer and I am thinking that a) your OH should have what he is entitled to for as long as possible and b) you can buy an awful lot of gin with the extra money.

xxxxx

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


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User
Posted 23 February 2017 21:47:20(UTC)

No worries - the gin is already stockpiled! But I will chat to the lovely hospice people about benefits generally and about everything else that's likely to land on us in the not so distant future. Helps to be prepared. And it also helps to have you lot rooting for us.

Thanks Lyn.

x

User
Posted 23 February 2017 21:57:11(UTC)

Hi Eleanor
So sorry to read this I truly am. For the both of you. I just hope things get better or at least more comfortable. X




If life gives you lemons , then make lemonade
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User
Posted 23 February 2017 22:30:40(UTC)

Thanks Chris.

Both of us feeling a bit less fraught since this morning's thorough consultation. He's slightly less sick and cheering himself up by watching Breaking Bad for the Nth time. Odd creatures you blokes. I've got my earplugs in and am listening to my groovy 60s music. And who knows, maybe Plan F will work...

Sorry for the tough time you are having too - hope it gets sorted very soon. Your sign-off is brilliant but I'm really not sure how much more lemonade either of us can drink!

E

x

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User
Posted 24 February 2017 08:15:31(UTC)

Just to say I hope your husband is feeling better today.

Fingers crossed for plan F

We can't control the winds - but we can adjust our sails
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User
Posted 24 February 2017 23:08:34(UTC)
Eleanor I've been trying to get onto the site since yesterday to get your update but I keep getting locked out.
Anyway I'm so sorry to see that you've had to move to f******** F ! BUT in some ways I'm also glad because I don't think the drs were really getting anywhere before and at last now there is a proper plan in place.
I really hope the sickness etc reduces soon because that must be so hard to deal with on top of everything else.
And you are a very wise woman to have got your therapies and counselling organised a little while ago - I'm so glad they are giving you some comfort.
I will send you a message x
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User
Posted 24 February 2017 23:18:49(UTC)
Hi Eleanor like Sally I have also had problems logging in probably got a hamster logged in my wheel πŸ˜†
I can hear from your post that things are tough but keep going we have been there so many times , Trevor has been on Abbi and steroids for 18 months and his PSA has continued to rise the whole time in fact it is only the last few months that we have seen a drop.
Keep peddling that hamster wheel the fat lady isn't singing yet.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 25 February 2017 11:46:32(UTC)

Cue dancing hamsters and non-singing fat ladies...amazingly something seems to have worked!

The consultant phoned yesterday with a prescription that she thought might deal with the sickness. He took the first dose last night and this morning the sickness was down from 9/10 to 7/10 and has reduced further to 6/10. He's having a kip now - all the various side effects are making him completely knackered but I'll take knackered and less sick over lively and feeling crap any day.

Thanks to all of you for being there. Oh but you are fabulous.

Here's to a peaceful weekend for us and you. And a rugby win for Wales.

Love

Eleanor and the hamster

xxx

User
Posted 25 February 2017 12:38:05(UTC)
Hurrah :-) I'll even shout for Wales for you - and that's a tough ask ! x
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User
Posted 25 February 2017 13:14:23(UTC)

Originally Posted by: Online Community Member

Please God, if you're there, let Plan F work. If ever anyone deserved some respite it is Eleanor and her OH.

Thank you God, I owe you a pint.

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User
Posted 25 February 2017 13:21:19(UTC)

Nothing ....... and I mean nothing, not even a reduction in nausea .... would allow me to cheer for Wales.

Have a restful weekend xxx

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


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User
Posted 25 February 2017 21:00:30(UTC)

Better news Eleanor, so good to get the nausea under better control, it is the most debilitating of complaints. Hope the improvement continues. Thinking of you.

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User
Posted 26 February 2017 00:06:33(UTC)
I am not into the Rugby / I am a Lady I am😜 But Absolutely Fabulous was one of my favourite programmes and your news is exactly that Ab Fab / fantastic news Eleanor.
Any reduction in symptom is brilliant and especially being sick or feeling nauseous trust me on this one since moving here nearly eight years ago I have suffered from ( i am sure there is a medical term for it ) but I will just call it it a jippy tummy I Puek at sights / smells/ thoughts / in fact the sight of a spider can set me of .

Keep climbing that hill and any Hamsters or fat lady's you encounter along the way just ignore them and keep driving.πŸ˜‰
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 26 February 2017 09:48:07(UTC)

So sorry to hear that things are so tough for you both now, Eleanor. I hope the sickness continues to respond to the medication and gives your OH some quality of life.

I don't read this Forum so often now, but do drop in occasionally to see how old friends are faring. You sound like a strong and capable person, but I know how it feels when your strength is tested to the limits. I recently went away on holiday to Thailand, which many people describe as a "brave" thing to have done, but it didn't require as much bravery as the final months of Tony's illness - not that I had any choice about that, but it took courage to keep going and stay calm and positive as far as possible. Just hang in there and take each day and each development as it comes, it's all you can do.

Thinking about you
Marje

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User
Posted 26 February 2017 11:44:48(UTC)

How lovely to get your message - thanks for the kind thoughts Marje.

Eleanor

xxx

User
Posted 28 February 2017 22:12:04(UTC)

Sickness level down to 3/10 this morning! Wandered up again (to 9) and then down again (to 4) and now at 5/10 and we're off to the pub singing a rousing version of the Halleluja Chorus as we go.

Omptipom and tralala.

E

x

User
Posted 28 February 2017 22:15:26(UTC)
Hurrah :-) x
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User
Posted 28 February 2017 22:42:22(UTC)

Originally Posted by: Online Community Member

we're off to the pub singing a rousing version of the Halleluja Chorus as we go.

Or even this:

https://www.youtube.com/watch?v=YrLk4vdY28Q

 

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User
Posted 01 March 2017 09:41:08(UTC)
Amen to that!
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User
Posted 01 March 2017 15:54:26(UTC)

If any of you lovely brave determined generous thoughtful funny (in a good way) people out there are not yet properly linked up to a palliative care team please DO IT RIGHT NOW. Whatever it takes - yelling, stalking, repeat phone calls every 23 minutes, megaphones, trip-wire.

Or maybe (as in our case) just somehow persuading your impossibly stubborn, non-verbal, fingers-in-ears OH that a proper holistic review of his health and well-being might be quite useful and then requesting an asap appointment. (I used to use the 'no nookie until you agree' persuasion method. 100% successful in the past - for holidays, scatter cushions or Christmas visits by the massed in-laws. Sadly it no longer seems to have any effect whatsoever.)

Anywayoop, today we went to see the consultant at the local hospice and she was absolutely AWESOME. One and a half hours of focused listening and beautifully clear explanations. Kind and compassionate and knowledgeable. She went through everything - physical and mental, past and present and possible future. All the various tablets and potions considered and tweaked or discarded or replaced. Gaps in their knowledge potentially filled with new scans and tests so that they/we will be ready for whatever happens or doesn't happen next.

We both feel so much calmer and hopeful and in control. It's like having a fairy godmother. I might just put in a request to adopt her.

If this incredible holistic service is available to you, please grab the opportunity with both hands. No more strong silent coping cobblers!!!

 

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User
Posted 01 March 2017 16:21:12(UTC)

Wonderful. You have made me so happy Eleanor.

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User
Posted 01 March 2017 16:24:41(UTC)

Oh you sweetie you!

E

x

User
Posted 01 March 2017 22:54:54(UTC)
Oh Eleanor loving your avatar that just screams your personality and I can one hundred percent identify with that. People often ask how can I stay upbeat and funny throughout our trials and tribulations my answer is , it's just me! of course I have times when I just want to run away and hide I have to be honest I have tried that option but forgot to change my fluffy slippers into my Nike trainers so only got to the end of the pathπŸ˜†

So glad to hear that things are improving on the sickness front .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 01 March 2017 23:21:57(UTC)

Hi Eleanor

Loving your avatar too!!

I'm so glad you got such a positive response from the hospice. I don't know how we would have coped without ours - they were amazing. And they were so supportive to me as a carer, and continue to be through counselling sessions.

Here's hoping the calmness and control continue.

Rosy xx

PS If you are going for adoption just be aware that the process is pretty lengthy so you'd better get started asap 

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User
Posted 01 March 2017 23:44:39(UTC)

Thanks Rosy! It's taken me 8 months to work out how to add a picture so I'm feeling very proud of myself.

Hospice staff are indeed amazing aren't they...such a massive difference when people combine medical understanding with human understanding. The situation we are in hasn't changed at all but our perception of it is now completely different. So glad to hear that you are continuing to get support from them. Must be such a help to have a space that's just for you.

And thanks for the adoption tip. I'll tidy the house and fill in the forms asap. Might be more problematic keeping the OH tidy.

Eleanor

x

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User
Posted 01 March 2017 23:58:17(UTC)

It certainly is just you Julie. Just you being endlessly brave and funny and headcluckingly extraordinary. And by just being you you have helped to make me braver and more hopeful. Thank you!

Love

Eleanor

x

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User
Posted 02 March 2017 07:20:05(UTC)

Great update get a real sense of breathing out and feeling supported. This will help enormously.

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User
Posted 12 March 2017 16:54:27(UTC)

I have a very dear friend who battles (magnificently) with deep-rooted depression and anxiety. She introduced me to the term 'horizon scanning' in this context. It's a bit like being a human meerkat - constantly on the alert for what might go wrong next, frantically trying to put stuff in place so whatever-it-is doesn't happen, and in a permanent state of stress. Which leads to emotional and physical exhaustion and more stress and more anxiety. Fun it ain't!

I realise that's been our lives for the past year or so - and reading your posts and profiles suggests that we are all at it most of the time. Which makes the courage and resilience and humour and determination and concern for others that's in plentiful supply on this site even more gloriously heartwarming. So, not for the first time, thanks to you all.

AND an update...

I have just had a 48-hour period without horizon-scanning. Nothing to do with the empty gin-bottle and chocolate wrappers in the bin; nothing to do with the daffs and the rugby (not the England Scotland game obviously!) and the sunshine and a day with the grandkids, though that all helped. My 48-hours without a single peek at the horizon is down to my fabulous, brave, massively annoying, kind, clever, impossible OH having had two days with minimal nausea and minimal bone pain. Which also means that he's had two days of feeling cheerful and hopeful and we've started to discuss holidays and booked tickets for a pile of concerts in April and May. Bl**dy brilliant and then some. 

E

xxx

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User
Posted 12 March 2017 18:18:22(UTC)
What a great post - just what I needed to read.
Here's to many many more pain / nausea free days and brilliant concerts to enjoy. x
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User
Posted 12 March 2017 19:15:09(UTC)

Thanks Sally - hope the chemo has done a good job of minimising your horizon-scanning days and that spring brings a bit of a breather for all of you.

Love

Eleanor

x

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User
Posted 12 March 2017 20:28:52(UTC)

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Please God, if you're there, let Plan F work. If ever anyone deserved some respite it is Eleanor and her OH.

Thank you God, I owe you a pint.

G, you da man, forget the pint, I owe you a skinful mate.

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User
Posted 12 March 2017 22:08:51(UTC)

Lovely uplifting post, may the respite turn into a prolonged pattern so you can enjoy getting out again. Great stuff.

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User
Posted 12 March 2017 22:43:01(UTC)

Thanks David - the notion of you and 'G - da man' having a skinful at the local will linger long!

E

x

User
Posted 13 March 2017 00:29:09(UTC)

Thanks Yorkhull - I'll drink to that (if I can get through the crush at the bar!) Hope you are doing ok too?

Cheers

Eleanor

x

User
Posted 13 March 2017 15:36:21(UTC)

I'll tell you tomorrow, onco appointment!

User
Posted 13 March 2017 15:53:54(UTC)

Hope all the results are good and the outlook positive. Good luck!

E

x

User
Posted 13 March 2017 21:02:47(UTC)

Hi Eleanor, Julie has messaged me because she can't get on the forum and didn't want you to think she was ignoring you. Things have taken a turn for T, who has been rushed to hospital - I have updated Julie's thread.

I am an habitual horizon-scanner, have been ever since my brother drowned at the age of 27 so I recognised the description straight away although I had never heard the phrase before. Enjoy those happy moments xxx

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


User
Posted 13 March 2017 21:34:37(UTC)

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 March 2017 11:48:27(UTC)

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

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User
Posted 25 March 2017 23:32:06(UTC)
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
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User
Posted 25 March 2017 23:44:06(UTC)
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
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User
Posted 26 March 2017 02:18:12(UTC)

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

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User
Posted 26 March 2017 06:21:21(UTC)

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.

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User
Posted 26 March 2017 06:47:36(UTC)

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
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User
Posted 26 March 2017 09:13:37(UTC)

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 March 2017 09:41:48(UTC)
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 northern lights whilst running in Iceland sept 2017
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User
Posted 26 March 2017 21:41:07(UTC)

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

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