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Plan F. As you were

User
Posted 26 March 2017 23:12:54(UTC)

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 March 2017 23:16:04(UTC)

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

Love

Eleanor

xxx

User
Posted 29 March 2017 23:09:49(UTC)

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

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User
Posted 30 March 2017 00:13:57(UTC)

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


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User
Posted 30 March 2017 04:31:14(UTC)

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".

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User
Posted 30 March 2017 05:26:13(UTC)

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
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User
Posted 30 March 2017 07:53:30(UTC)

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

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User
Posted 30 March 2017 11:53:53(UTC)
An inspiration!
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User
Posted 31 March 2017 21:38:36(UTC)
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
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User
Posted 01 April 2017 05:54:29(UTC)

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

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

We can't control the winds - but we can adjust our sails
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User
Posted 01 April 2017 10:56:25(UTC)

You are right up there in the legend stakes Julie - always there with support and comfort even when you and Trevor are going through unbelievably tough times. And always able to make me laugh...I have a wonderful image of you in your fluffy slippers clearing puppy poo with Trevor on the roof (probably lighting bonfires) and a bin full of hamsters. Cheers me up just to think of you!

Love

E

x

User
Posted 01 April 2017 11:05:16(UTC)

Thanks for your kind post Sandra...how lovely that you have found your soul-mate too, and that you have been there for each other for over 48 years. We've had 27 - I spent a helluva lot of time kissing frogs before I found a prince. And even then it took me several years to persuade him that I was the best thing that had ever happened to him. Men can be so dopey sometimes!

Hugs

E

x

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User
Posted 01 April 2017 20:52:29(UTC)
I am so pleased that you are focussing on the now. I have so much on at the moment with running, fund raiising, organising events plus usual family stuff that my mind has no space for cancer, long may that continue for you too.
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 02 April 2017 10:17:10(UTC)

Originally Posted by: Online Community Member

I spent a helluva lot of time kissing frogs before I found a prince.

Ribbit-ribbit.

User
Posted 02 April 2017 13:47:54(UTC)

I'm not falling for that one again!

User
Posted 02 April 2017 13:53:48(UTC)

New more cheery avatar to signal the so far so good implementation of Plan G...

E

x

User
Posted 02 April 2017 14:45:34(UTC)

You are amazing :)

Hug!!

Lola

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User
Posted 06 April 2017 23:25:54(UTC)

New happy hamster mode continues - ably assisted by the sunshine and the massed medics who have now given my OH: a head MRI (to check if the 'ice-pick' pains he was getting were a symptom of something serious - they aren't); an endoscopy and biopsy (to check for serious causes of the sickness - none except for some minor irritation of the stomach); a consultation with a very cheery bowel/gastro/prostrate combo specialist who talked us through the possibilities for future treatment and booked him in for a colonoscopy); and another infusion of Zometa for the bones. Plus the HT and the Abi and the steroids and the MST.

And another consultation with the onco today - no-one mentioned the PSA and frankly who cares since we are doing fine - and a suggestion that he gets screened for the TOPARP trial (http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-olaparib-for-prostate-cancer-that-has-spread-and-got-worse-despite-hormone-therapy-and-chemotherapy-toparp).

Don't know yet if he will be eligible but the trial focuses on castrate resistant and aggressive forms of cancer that have continued to spread despite chemo/HT treatments. They check for a particular gene marker and, if you have it, you get treated with a drug called olaparib that they think might be effective against advanced prostate cancer. The onco suggested going ahead and getting the screening done (using a bit of the original biopsy and some nice new saliva) so that, if he does have this gene, they can be ready to give him the olaparib if/when the cancer symptoms worsen. Will let you know if it goes ahead but, either way, all the attention is cheering him up immensely. And he went for a long cycle ride last Tuesday and has had no adverse effects at all. How fab is that!

And the horizon remains unscanned. Yippetty do-dah.

E

x

User
Posted 07 April 2017 07:46:02(UTC)

From your post I can see the sun on the horizon. The rays might be a long way away but they are there and warming you (and therefore us) with positivity.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 07 April 2017 22:07:57(UTC)

I'm keeping everything crossed that if the trial would be a good thing - then he gets a place :-) x

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User
Posted 08 April 2017 11:16:40(UTC)

Hope the colonoscopy goes ok. I had one recently and the 'evacuation' day before the procedure is challenging. I found the actual procedure ok. Good luck though it's a trying four days. Be interesting to see if you get on the trial, good luck and you do sound very upbeat which is cool.

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User
Posted 09 April 2017 20:16:50(UTC)
Oh E what a lovely inspiring and uplifting post. So yes YAY the sun is shining and thank goodness for that . Mandy who doesn't come on here anymore was always positive about the Olaparib trial so I have everything crossed that this will be an option .
I have watched how you have grown in strength on here and you know that I understand how hard that is but blooming heck girl ! You Are Doing It !
Xx
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 09 April 2017 21:03:12(UTC)

Thanks for the heads-up Paul - just read through the instructions and it does sound just a bit challenging...I will obviously have to drive very fast to the hospital on the appointment day, preferably choosing a little-used route with plenty of bushes on either side of the road. You chaps certainly have a lot to put up with one way and another - not sure I'd be dealing with all this prodding and poking of my public privates as cheerfully as you!

Any idea when you will hear back about the PIP? Do hope that comes through for you...

Take care.

E

x

User
Posted 09 April 2017 21:13:59(UTC)

Hi Lovely Julie!

I was wondering how you and Trevor were getting on...hope things are ok and so glad to hear that the sunshine has been beaming down on you too. Thanks for the nice compliments. You continue to be my role model you know, hairy legs and all!

Take care.

Hugs

Eleanor

x

User
Posted 10 April 2017 21:21:23(UTC)

Waiting for call for assessment for Pip. But I'll let you know when I get the result.

User
Posted 15 April 2017 14:38:57(UTC)

Uncertain harvests continue to be very uncertain indeed. Puts me in mind of school harvest festivals. I took in a tin of pineapples one year, a rare and strange object in those ancient days, and fully expected to be universally admired for my exotic sophistication. I wasn't!

Soooo...last Thursday the lovely hospice nurse came to discuss the various pills and potions and, since we've had two weeks without any significant bone pain (hoorah), suggested switching from slow-release morphine to Oxycodine to lessen my OH's general level of confused dopiness. The evil cancer bunnies must have been listening in because that night he was in agony and hardly slept with the pain. We dosed him up to the eyebrows and everything calmed down.

Then yesterday two of the grandchildren came to stay (aged 3 and 9) and up shot the pain levels and up shot his temperature to well over 100F (we haven't worked out decimals yet) and we had this mad evening/morning of pretending everything was ok (the family still don't know that he has cancer) while my OH was virtually immobilised. Thank heaven for ninja turtles and minecraft and Oramorph - kept them all in their own little worlds while I raced around making easter egg hunts, fish-feeding, tea-making, jigsaw putting together, bedtime stories, mopping up random bits of wee (the little one is just working out how to aim in to the toilet as opposed to around it), making breakfast, doing silent hide and seek (while OH was sleeping), finding lost toys and persuading the little one to get dressed (he'd really rather not) and eventually depositing them home several hours earlier than intended with some vague story about a bad back.

We've flung so many pain-killers at him I'm amazing he can even speak but they are working and he's had a couple of hours sitting in the garden in the sun reading the papers. Now he's having a kip, I'm eating a bar of chocolate (my easter present to me) and we're off to the out-of-hours clutching a urine sample (hopefully OH's not the grandsons') at tea time to see what's up.

Will let you know the outcome. Meanwhile, hope your eggs are in several baskets and that the evil easter bunnies don't darken your doors. Have a good break...

E

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User
Posted 15 April 2017 22:20:16(UTC)
Ow wow E I so get it when you think everything is just chugging along nicely and then the thunderbolt hits , one minute all is good , all is calm and then the next minute it's like a sunami hits . Been there done that one and got the TShirt.
We have told everyone about Ts diagnosis but that was 4 years ago and I must say most family members know 4 years on have got complacent and are pretty chilled and relaxed about our dramas . I kinda get a yea whatever feed back these days , I don't blame them we have lived through more dramas than Syria.
The choice to tell family members is always a bone of contention a should we , shouldn't we situation . Trevor was so poorly in the beginning that we didn't have much choice.
There is no easy answers
Keep going my little Easter bunny , this is what we call the roller coaster and boy does it flip you round and round.
X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 15 April 2017 22:56:18(UTC)

Got the t-shirt and the matching onesie and fluffy slippers I reckon Julie! Roller coaster is certainly the perfect description. I do understand the 'yeah whotevah' response to drama - it's certainly preferable to the headless chicken routine that I used to go in to even a few months ago.

Saw a very nice o-o-h doctor who coped beautifully with the fact that my OH was throwing up into a small cardboard bowl at regular intervals throughout the consultation. On the good side his bone pain was less severe and his temperature had come down to almost normal and it wasn't MSCC. On the bad side he'd thrown up the little food he'd had today so that won't have helped him feel better. The doc thinks it was a viral infection causing the temperature and a combination of that and the amount of morphine/pain-killers he had on a virtually empty stomach that caused the sickness. The bone pain was caused by who knows what (although I have my suspicions Dr Watson). So he had an anti-vomit injection and some melt-in-the-mouth anti-sickness tablets and home we came.

He's still feeling sick but has stopped being sick which is a definite advance. Hope the bone pain doesn't return tonight though since he doesn't want to risk taking the Oromorph in case the sickness returns. He's decided that pain is the preferable option and taken himself off to bed.

Fingers and toes crossed for a peaceful night. For you too.

E

x

User
Posted 16 April 2017 07:27:19(UTC)

Thinking of you both Eleanor and Julie.

A tough row to hoe and I so admire your strengths

We can't control the winds - but we can adjust our sails
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User
Posted 02 May 2017 22:58:34(UTC)

Another month, another pile of giant wombat's droppings. I am trying VERY VERY hard to hang on to 'the springing of the year' but the giant wombat's droppings are definitely a hindrance. My dear lovely old OH is going through such a rough time - bone pain spikes, unable to hold food down, constant nausea and just so weak and fearful. Makes my heart weep to see him.

BUT we are getting a ton of help. There's probably no more than a couple of bob (and one of those old pennies that kids used to leave on the railway lines to get flattened) left in this year's NHS Wales budget. He's taking a whole pharmacy's-worth of tablets, we have paired sets of cheery district nurses coming and going at frequent intervals, the onco has been on the phone three times today, our palliative care nurse came round to organise a complete new treatment plan, he's getting NHS acupuncture for the sickness, the GP filled out a new medicines chart for the house and the local pharmacy stayed open late especially for us. Bluddy blooming flipping amazing.

So today's plan: a dual syringe-driver to deliver the pain-killers and the anti-sickness drugs more effectively and at a lower dose and bypassing his stomach which will hopefully lessen the sickness. And if that doesn't work, a spell in the local hospice to get his drugs sorted out. We are getting closer to the time when the family really will need to be told that it's not just a headache or a bout of man-flu. It will be a relief not to have to tell fibs - particularly since I'm absolutely rubbish at it and keep getting my story muddled and my knickers in a twist. And vice versa.

Bugger bugger bugger as the poet quoth.

E

x

 

 

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User
Posted 02 May 2017 23:16:44(UTC)

I am so sorry to see this, E - it certainly seems that you are coming to the very difficult time of trying to balance enough meds to maintain a reasonable quality of life with not so much that OH is knocked out all the time. And difficult decisions like do you want a trail of people coming now while he can still enjoy their company a little bit, or put them all off and suddenly find it is too late for jovial visits. Such a horrible time for you; you have been amazing and will just (just ... such a ridiculous little word) need to draw on that strength a bit more to keep your man safe and comfortable for as long as possible. Thankfully, it seems you are getting a fantastic service from the agencies but don't forget to take care of yourself in all this; someone has to care for the carer.

I am thinking about you xxx

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


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User
Posted 03 May 2017 05:18:55(UTC)

Thinking of you both Eleanor
All though it is awful times you seem to have the pain mostly under control which is a blessing I suppose. You are so strong and capable and I admire your love. Best wishes
Chris




If life gives you lemons , then make lemonade
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User
Posted 03 May 2017 06:35:46(UTC)

Eleanor,

We're sorry that OH's troubles continue but are gratified to hear of the superb support you are receiving from all the medics involved.

All our love to you.

David and Linda

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User
Posted 03 May 2017 07:33:49(UTC)

I admire your strength and wish the best to you both, Eleanor.

Lola

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User
Posted 03 May 2017 08:17:55(UTC)

Thinking of you, Eleanor. Glad to hear you're getting such fantastic support in the NHS, but it must be a burden keeping it from other people, and the worry of how and when to tell them will be looming over you. I'm not best placed to advise on this, as we simply told everyone right from the start, but there comes a time when the family have a right to know, and to prepare themselves for what lies ahead.

It is horrible having to tell people, but I think once you have tackled this and they have got over the immediate shock, you and OH will both find new sources of support. You will surely be relieved not to have to fib and pretend, and will be able to talk honestly about your feelings, your worries, and your plans. You owe this to yourselves as well as to the family.

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User
Posted 03 May 2017 11:42:48(UTC)

Thanks Marje...wise words as ever.

After the chaos of yesterday when I was dashing around in the rush hour trying to get the various prescriptions from various pharmacies and the check-list from the doctor and phone the district nurses and respond cheerfully to anxious calls from his daughters, while he was at home being ill and feeling ill, I decided that enough was enough! I also realised that I hadn't washed properly for three days and looked like a plumper version of the Lady in the Van (only not so well turned out).

So I asked him about it this morning on the way back from the hospital. He wasn't keen but he understands that I need the support - and that the kids deserve the truth. I suspect/hope he will find it a relief too. So all we need to do now is to work out how and when.

I think about you very often and wonder how you are managing. Still such early days and I can't imagine how one ever adjusts. Sending my love. Thanks for your kindness.

Eleanor

x

 

User
Posted 03 May 2017 12:15:29(UTC)

I can't think of anything to say that hasn't already been said, or that will not come out as banal or flippant, which I certainly wouldn't want.

Just know that I admire your courage and strength and hope that once your family and friends are told they will be an amazing support for you.

I'm thinking of you

We can't control the winds - but we can adjust our sails
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User
Posted 03 May 2017 22:15:20(UTC)

I have been open about my diagnosis since the start and only my elderly mum (she's 93) we have not told. Be prepared for people's reactions to vary, some cannot cope and somewhat ironically, you find yourself trying to help them. But most people are simply amazing. The warmth and helpfulness that friends and family will give will sustain both of you through these unwanted times. But you will both feel less alone and it also opens up time to create memories, to talk to each other before it is too late.

The thought will be much worse than the wave of support you will receive. Good luck on this next stage.

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User
Posted 03 May 2017 22:26:40(UTC)

Many thanks Yorkhull - I am anxious but that makes me feel a tiny bit less so. In fact, on second reading, it makes me feel a big bit less so! The plan is to see the onco tomorrow to get some understanding about where we are at and what's next so that we can be clear in what we tell them. We'll probably wait until Friday evening so that the massed grandchildren are all out of the way and so that they have a bit of time to deal with the news before they go back to work on Monday. They are already worried because it's clear that something is seriously wrong so the truth might be a relief in some ways.

Might have a stiff gin before we set off however!

E

x

PS any news on the PIP?

User
Posted 04 May 2017 12:24:20(UTC)

No news on pip. Expecting a letter for an assessment but maybe they are awaiting references from the medics. I have results of scans etc next week so medics may have been waiting. One good thing is that if they end up offering pip to me then it's back dated to the point you first applied. Would like to know because the summer is here and I want to get out more, next summer you never know.

Good luck this weekend. There will be tears and lots if questions but it will end with loads of support which will be a boost.

User
Posted 04 May 2017 22:11:40(UTC)
Oh E knickers in a twist and not washing I hate to admit it but yes I have also been there , more than once I have looked and smelt like a hamster. This cancer malarkey is so not glamourising is it.
I always wanted to appear totally in control and with a M&S smile and jacket and what actually happens is I am unwashed , hair not Brushed and looking more like the wild woman of Borneo .
Life never quite goes how you plan it .
So sorry to read things are not going well , keep hanging in there girl .

Telling family and friends is hard we have got the T shirt on that one , we told everyone early on but that has back fired because Trevor has survived the odds they know think he is invincible. Of course he isn't and the end game will come one day.
Thinking of you often.
Xx
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 04 May 2017 22:20:12(UTC)

Oh Julie, you have been and are such a source of strength to me. And such a source of unexpected laughter in the middle of the headclucking gloom of this effing disease.

Love from one unwashed hamster to another.

E

x

 
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