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Plan F. As you were

User
Posted 23 Feb 2017 at 17:36

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

User
Posted 26 Mar 2017 at 22:41

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 12 Mar 2017 at 16:54

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

User
Posted 23 Feb 2017 at 17:36

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

User
Posted 01 Mar 2017 at 15:54

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!!!

 

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 30 Mar 2017 at 00:09

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 31 Mar 2017 at 22:38
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 πŸ˜‰Life is for Living .😍

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Apr 2017 at 12:05

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

User
Posted 01 Apr 2017 at 21:52
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.

Edited by member 01 Apr 2017 at 21:53  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 15 Apr 2017 at 23:20
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
User
Posted 23 Feb 2017 at 20:15

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.

User
Posted 23 Feb 2017 at 20:52

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

User
Posted 23 Feb 2017 at 21:57

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

User
Posted 23 Feb 2017 at 22:30

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

User
Posted 24 Feb 2017 at 08:15

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
User
Posted 24 Feb 2017 at 23:08
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

User
Posted 24 Feb 2017 at 23:18
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
User
Posted 25 Feb 2017 at 12:38
Hurrah :-) I'll even shout for Wales for you - and that's a tough ask ! x
User
Posted 25 Feb 2017 at 13:14

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.

User
Posted 25 Feb 2017 at 13:21

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

User
Posted 25 Feb 2017 at 21:00

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.

User
Posted 26 Feb 2017 at 00:06
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
User
Posted 26 Feb 2017 at 09:48

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

User
Posted 28 Feb 2017 at 22:15
Hurrah :-) x
User
Posted 28 Feb 2017 at 22:42

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

 

User
Posted 01 Mar 2017 at 09:41
Amen to that!
User
Posted 01 Mar 2017 at 16:21

Wonderful. You have made me so happy Eleanor.

User
Posted 01 Mar 2017 at 22:54
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
User
Posted 01 Mar 2017 at 23:21

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 

User
Posted 01 Mar 2017 at 23:44

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

User
Posted 01 Mar 2017 at 23:58

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

User
Posted 02 Mar 2017 at 07:20

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

User
Posted 12 Mar 2017 at 18:18
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

User
Posted 12 Mar 2017 at 19:15

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

User
Posted 12 Mar 2017 at 20:28

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.

User
Posted 12 Mar 2017 at 22:08

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

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 03:18

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 07:21

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 07:47

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 10:41
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 racing in the Sahara April 2018

User
Posted 30 Mar 2017 at 01:13

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 05:31

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 06:26

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 08:53

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

User
Posted 30 Mar 2017 at 12:53
An inspiration!
User
Posted 01 Apr 2017 at 06:54

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 08:50  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Apr 2017 at 15:45

You are amazing :)

Hug!!

Lola

User
Posted 07 Apr 2017 at 08:46

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
User
Posted 07 Apr 2017 at 23:07

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

User
Posted 08 Apr 2017 at 12:16

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.

User
Posted 09 Apr 2017 at 21:16
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
User
Posted 15 Apr 2017 at 15:38

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

User
Posted 16 Apr 2017 at 08:27

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
User
Posted 02 May 2017 at 23:58

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

 

 

User
Posted 03 May 2017 at 00:16

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

User
Posted 03 May 2017 at 06:18

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

User
Posted 03 May 2017 at 07:35

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

User
Posted 03 May 2017 at 08:33

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

Lola

User
Posted 03 May 2017 at 09:17

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.

User
Posted 03 May 2017 at 13:15

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
User
Posted 03 May 2017 at 23:15

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.

User
Posted 04 May 2017 at 23:11
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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Posted 23 Feb 2017 at 20:15

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.

User
Posted 23 Feb 2017 at 20:51

Aw thanks David! That should do it!

x

User
Posted 23 Feb 2017 at 20:52

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

User
Posted 23 Feb 2017 at 21:47

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 Feb 2017 at 21:57

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

User
Posted 23 Feb 2017 at 22:30

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

User
Posted 24 Feb 2017 at 08:15

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
User
Posted 24 Feb 2017 at 23:08
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

User
Posted 24 Feb 2017 at 23:18
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
User
Posted 25 Feb 2017 at 11:46

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

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.

User
Posted 25 Feb 2017 at 13:21

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

User
Posted 25 Feb 2017 at 21:00

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.

User
Posted 26 Feb 2017 at 00:06
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
User
Posted 26 Feb 2017 at 09:48

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

User
Posted 26 Feb 2017 at 11:44

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

Eleanor

xxx

User
Posted 28 Feb 2017 at 22:12

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 Feb 2017 at 22:15
Hurrah :-) x
User
Posted 28 Feb 2017 at 22:42

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

 

User
Posted 01 Mar 2017 at 09:41
Amen to that!
User
Posted 01 Mar 2017 at 15:54

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!!!

 

User
Posted 01 Mar 2017 at 16:21

Wonderful. You have made me so happy Eleanor.

User
Posted 01 Mar 2017 at 16:24

Oh you sweetie you!

E

x

User
Posted 01 Mar 2017 at 22:54
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
User
Posted 01 Mar 2017 at 23:21

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 

User
Posted 01 Mar 2017 at 23:44

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

User
Posted 01 Mar 2017 at 23:58

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

User
Posted 02 Mar 2017 at 07:20

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

User
Posted 12 Mar 2017 at 16:54

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

User
Posted 12 Mar 2017 at 18:18
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

User
Posted 12 Mar 2017 at 19:15

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

User
Posted 12 Mar 2017 at 20:28

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.

User
Posted 12 Mar 2017 at 22:08

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

User
Posted 12 Mar 2017 at 22:43

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

E

x

User
Posted 13 Mar 2017 at 00:29

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 Mar 2017 at 15:36

I'll tell you tomorrow, onco appointment!

User
Posted 13 Mar 2017 at 15:53

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

E

x

User
Posted 13 Mar 2017 at 21:02

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 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 03:18

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 07:21

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 07:47

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 10:13

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 10:41
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 racing in the Sahara April 2018

User
Posted 26 Mar 2017 at 22:41

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

 
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