Plan F. As you were

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

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!!!

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

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

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

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

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

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

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

Have a restful weekend xxx

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.😉

BFN

Julie X

So glad to hear that things are improving on the sickness front .

BFN

Julie X

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

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

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

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

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

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.

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".

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

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

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

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.

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

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

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

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

Lola

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