Good morning from me, good evening to you (heavens I sound like the Two Ronnies!).

The night has passed without any dramas.  I waited till 11pm till I went to bed to be sure I was good and tired.  I put a triple dose of Sleepdrops under my tongue and when my head hit the pillow I was gone - blessed and wonderful lala land

I've woken at 8.15 and Ian was awake already.  He is very emotional.  When I told him our neighbour had spent 3hrs with me yesterday he got all misty-eyed.  When I told him Expat's husband was "in the wars" he welled up again.  So I guess I'll be watching what I say and find some balance in my news-casts!!

I so appreciate your messages, Expat, Katielouie, Jules 54 and Swedes.  I get annoyed that the few friends I have left react to yesterday's situation with a text message. You guys post on a Discussion so it's not too dissimilar is it?  But you are 12,000 miles away!!  Some of my friends live 1/2 a mile away!!  And it is all about not being able to face their own mortality!!!!!

A very, very good thing is that Ian says he feels this morning more energetic than he has in weeks.  So I'm thinking that the blood/calcium was having an effect - tiredness is one of the wimpier sounding side-effects that I hadn't even taken any notice of.  But in saying that he feels more energetic doesn't actually mean to say he's (a) out of bed or (b) doing anything energetic.  It's just how he feels whilst lying horizontal in bed

So I've put the jug on for a pot of green tea (well and truly steeped to get maximum antibodies etc. per an internet site I was reading) and I will go and enquire what Sir would like from today's breakfast menu.  Perhaps we are back on an even keel again for a little while.  Sad thing is that means we've got to go through all this (or similar again) very soon.  I think I have found the perfect torture for a loving wife

Your suggestion of ME time sounds wonderful and scary at the same time Jules54.  I took 3/4 hr of ME time twice during the "radiation wars" a couple of months ago.  The body was absent from home but the mind was very much at home with Ian and there was no comfort or pleasure to be had, for me anyway.  And I have 30 yrs or more ahead of me alone - I don't want to start now!!  Hark at me - now who can't face her own mortality - so correction! I think I have 30 yrs or more!!!

Nite, nite all - hope you all sleep well - thank you.

Lorraine

Oh Elkay,   Such a nightmare not knowing if symptoms/effects are expected/ normal (for a cancer paitient) or need reporting,  wondering if there is anything we can do to help, or if we are getting it right?  5 hours of waiting for a return call does'nt help the stress levels, (does't seem very satisfactory). Does Ian take any decisions to phone the hospic for advise himself or just keep his head down in the hope he will be able to stay out of hospital and leave you with the responibility?  You're not selfesh for feeling the way you do, its just part of the cancer mud we trudge through as  the nearest and dearest.  I'm a bit concerned about the attitude of the hospice  -  maybe they work different to those  in the u.k. but I allways thought they cared for the family as a whole at these times, you should not feel shut out. Do they not even have coffee and tea making  facilities for families in N Z hospice?

However I do  think 'How about a bit of shopping, what about a break, etc. etc. are just different ways of saying '  'I just  need to speak with the patient alone' , been there,  heard that more than once, feels horrid being a bit surplus.  Try not to feel hurt by this, but it may be very good for Ian to be able to speak his mind without worrying  how it might effect you.   These are such difficult times for you both.    I hope Ian has  been able to keep the H2O up and the symptoms down and you both can have a little bit of a normal Sunday.

Wish I could type and spell as skilled as you, I've only been part of the way down your journey, and cannot begin to understand how you are feeling but  I reconize some of the fears and frustrations.   We have to take care of ourselves to be there for those we love, so do what you need to do to get some sleep.

Many are thinking of you both here in the U.K. so hope you can feel hugged a little,  I'd bring you fish and chips and a little something stronger if I could,  gardenlady

Thank you for your post Gardenlady.  But I suspect with a name like yours it would be Burdock Wine or something equally homemade and probably rocket fuel hahaha.  I fell in love with Italian Prosecco when we spent a month in Switzerland over Xmas/New Year 18mths into remission.  We were sitting in a cafe on the shores of Lake Locarno with Italy just across the way and I ordered a glass of this Prosecco that sounded intriguing - YUM!!!  So this New Year as a present for our catsitting neighbour we brought her home from an Auckland wine merchant a bottle of Prosecco as a little "taste of things to come" because she and her husband are doing a Med cruise in July this year.  This morning she texted me that they had the Prosecco last night and were now very excited about travelling to the Home of Prosecco hahaha.  And I was thinking, Boy I could'a done with a glass of it myself last night hahahaha.

I love your description of the "cancer mud we trudge through."  I think it's a brilliant description.

Our "home away from home" hospice has microwave/fridge/tea/coffee/milk facilities and there's a cupboard with a few donated tins and packets of donated food for "emergencies."  I did "borrow" a tin of soup when Ian was in the hospice last and when he was encouraged to get up and go walking we walked to a nearby superette and I bought a replacement.  There's even a plastic box of plain biscuits for the families - so eating is possible, good nutrition is not hahaha.  I guess I shouldn't be making such a fuss but I just feel a carer should be acknowledged as being in the room at the very least and some attempt made to look after them too, especially if they are feeling as bludgeoned by the whole journey as I am.  It would just an extra breath or two to say "Hello, how are you getting on, do you know where our tea and coffee facilities are?"  I was told when "being given the tour" back in November when Ian was admitted there that "we cannot cater for you, you must provide your own food" and so I set off on foot, because I had come in the ambulance with Ian, to a supermarket ten minutes walk away - and half way there the skies opened and I got drenched.  Wouldn't you think after a day of illness/ambulance ride/admission for the first time to hospice there would have been some compassion - sort of, We don't usually feed the carers but you don't really need the hassle of searching out food.  I have emailed our social worker of six years' standing who (happily for us) left the hospital system and moved to the hospice just three weeks before Ian was transferred to their "care." I touched on my experience at the time of Ian's last admission but the focus was more on getting Ian the CT he wanted.  I am going to bring it up again, but only if the news tomorrow isn't too dire, making my "hissy fits" too trivial for words   It is something I think I might act on once I am living over there - to maybe cook for the carers and drop in meals to them - especially those from out of town who stay with their loved ones.  My heart breaks for carers older and less capable than me who can't trudge out in the pouring rain to buy food.  It's a sort of pathetic side-show to Ian's Cancer Journey but we could really do without it.  The one wonderful memory I will carry with me always is us being cossetted on Ian's last night in hospice back in November.  An old-school nurse, probably in her late 60's, who works three days in the hospice asked us what we were watching on telly.  We said Downtown Abbey.  She said Right, you'll be needing a snack to munch on while you watch.  She arrived back with a plate laden with the most delicious slices and cakes - it was the forbidden patient food!!!  Ian hasn't got a sweet tooth and just had the one - I have - and I had more.  But I also felt spoilt and cosseted and valued.  It was a lovely feeling.

Ian has announced - whilst lying flat on his back and doing absolutely nothing - that he feels much more energetic than he has in weeks.  So I'm thinking one of the blood/calcium side-effects (lethargy) was there all along but we thought it was the Nozinan anti-nausea tablet's effects.  So as usual we play catchup.  The previous blood test for blood/calcium was if I remember right 21st December.  Given that it was only 0.1 below the high side of normal, wouldn't you think "they" would have ordered another as soon as we got back at New Year, let alone the next week.  Why was it left to get worse, unmonitored, for eighteen days??  Welcome to Health Care in New Zealand, Fawlty Towers Style.

Time for me to get dressed (typing in my nightie ) and attack the jungle that surrounds our swing seat.  We are expecting a 24degC high today but there is a lot of cloud cover so it will be a little more pleasant than usual to attack my weeds.  And it is good to take out your aggression on unsuspecting weeds isn't it Gardenlady??

Lorraine

How dare you harrass me with your "proven natural treatment."  How dare you suggest you can cure a man's cancer that is in his lungs, his abdominal lymph nodes and now in his bones.  Where do you people get off trying to make money off people like me??  I'll give you a 100% solution - a large box labelled BOMB!  Bog off this website and don't come back!!!!

It is unbelievable that anyone can stoop so low as you horrible people who prey on the desperation of people with cancer.   Words fail me....I cannot express what scum you are.

Hi Elkay,

My first thought when I got up here in the UK at 6.30 a.m. (yes you guessed it sleep pattern all over the place- seems easier in front of the evening tv than in bed trying to ignore the 'funny breathing patterns') and read your post about your weather was how nice to be warm (below freezing here with some areas expecting snow-brrrrrr ). Then I thought how silly, cancer does not care about the weather!!!  I am never short of amazed at how your sense of humour still comes through despite your horrific journey with Ian's cancer (my Mum used to describe feeling like a washed out dishcloth when helping care for my Dad (they were in their early 80's at the time and I still dont know how she did it!!). Isnt it surprising how two different members of staff (in the same hospice) can gave out such differing attitudes, makes you wonder why some of them take up the challenge of working in this environment when they cant recognise the carer's needs.  Must say when my Dad was in the hospice for his last days they were totalling welcoming to the whole family and I found it a very re-assuring place to be (though I was not there much at meal times!!!).

Hope Ian's energy stays with him when he becomes vertical and glad that you managed some sleep to help you through another day which I hope has more ups than downs. I know what you mean about not being able to switch off mentally when you are apart . My head is either worrying about my hubby (we are only 11 months into his incurable cancer journey with no end of life time line - thankfully), feeling sorry for myself and what the future may hold, if anything, then feeling guilty for thinking of myself, then switching my thoughts to my Mum who is now in residential care because she does not want to carry on living because she needs help to look after her personal needs due to declining mobility (she is 87 this year).  I have a friend who said God only sends you as much trouble as you can cope with (I am not particulary religious)  but I am not so sure about this!!!

Stay in touch Elkay and as you can read there are many here who wish they could hold your hand and help but am sure, like me, you find some relief in sharing with complete strangers who seem to understand whereas 'closer' friends are frightened to deal with it.  On that score at least my daughter, son and their partners plus having a 4yr old grandson do keep me in the land of the living.

Best wishes for a happy Sunday   Jules54

Just passing the computer as I try to corral all the cats inside just on dark - I am still missing one!! I saw your post.  Thank you.  Ian's "more energetic" lasted in a horizontal position for approx 15 minutes then he fell into a deep sleep for the next four hours!!!  If that's energetic, I must be turbo-charged! 

Then at last he woke, but only to the demands of diaorrhea.  But I was there in a flash with No1 and No2 of the 300 Diastop tablets he was issued 18mtns ago ago and have never been dispensed.  He felt a little better for a while, but kept having hot flushes despite lying on the bed just in his undies with windows wide open.  I checked his temperature - eeee gods!  40.0 under the tongue.  Too scary to contemplate so I suggested under the arm might be less scary.  Yes, only 39.1!!!  So I rang the hospice immediately to keep myself out of the doodoo.  I had googled Friday's drug and one side effect possible was flu-like symptoms, aches, pains, chills and they all fitted at various times of the day.  And the nurse said yes, it was perhaps possible it was a side effect, but also maybe an infecftion of the bladder or chest - very comforting hahaha.  Panadol was prescribed and he's a little better.

So that's Ian's full-on energetic day - horizontal apart from toilet visits.

I am knackered - I think I would do a very good imitation of a dishcloth myself.  Time for a piece of bread and cheese and a cuppa and bed.  Heaven only knows how I am going to get Ian up and dressed and vertical tomorrow for the 30 mile drive to the hospice appointment to get the CT result.  And heaven only knows how we are going to cope with what we expect to be told.

Nothing in life prepares you for this Cancer Stuff does it??

Thanks again for your post Jules54.

hi lorraine

I am sorry to read how hard things are getting .Results days suck out the  energy that you dont have to spare.When i look back on some of those days they seem  almost surreal .You do get through it althrough god knows how. .

I was talking with my husband yesterday about how difficult it is to remember what normal people would find tiring.I think it is difficult for the carer to say they find anything hard because obviously it is physically worse for the sick person but  the carer still needs the basics in life and i dont mean sps days (althrough  that would be nice) just food ,sleep and company. Dementedly long days ,rotten or no food and lack of sleep would be hard at any time and it is worse when you are emotionally drained.There is a point where you reach your physiacl limit and you should never feel bad about that it just means that you are human.I know that it is easy to say but i hope that you look after yourself-sadly food cannot cure cancer but it is still good medicine for life-it is why god invented chocolate.

You and ian are inspiring - you have managed to fit so many good things into hard times.Nothing prepare you for this but your writtings are leaving go to sign posts for other people on this journey.

good luck

emma

Hi Elkay

Now6.37 a.m London time and logged on before work (still do part time three days a week for as long as I can). My thoughts are with you and Ian as I suspect that by now you have news from the scan.  My wish is that by now you are back home enjoying home cooking rather that the hospice 'rations'. Be prepared becomes a mantra at all apppointments (though I was never a girl guide) and that just in case scenario is such a pain. Keep your amazing spirit (you remind me of our now rather common 'bounceback' voucher) though I have no idea how your keep getting the strength to cope?  Even typing this I can feel the lump in my throat (the cancer journey plays havoc with our emotions even when we are talking to people we have never met but feel we know through the magic art of virtual sharing). Hope the warm rays of the sun are warming your day (we have  a light sprinkling of snow ). Hope those rations you pack contain some treats for you both!!!  All the best of luck in the world .Jules