I've been posting to other people, steadfastly ignoring my own situation.  We'd have to be blind to think Ian's no worse.  We have two blood tests in two days as proof and a looming CT result on Monday.  We had so much planned for the end of last week that I suggested Ian have the pre-Mon clinic blood test on Wednesday - less to fit into our hectic social calendar - yeah right!!  The hospice nurse came for her home visit on Thursday morning and noticed our bags packed in the hallway ready to stay the night before the CT scan (and prevent an early morning start and 30ml dash to the hospital).  She approved the "grabbing fun where you can strategy" but then said she might have to put a spoke in the works.  Ian's blood test from Wednesday had shown his blood/calcium was on the rise and was above the normal, safe level.  She was gobsmacked that he wasn't displaying all the symptoms she expected - nausea, vomitting, confusion etc.  We talked about the last week or two and when I said I was bombarding us both with chilled water to cope with the heat (and help me with my Weight Weighters/New Year's Resolution regime) she said that explained it - and that was the only thing that had prevented Ian having really bad symptoms.  Fancy that - good ol' H2O.  She asked for a blood test that afternoon just to be sure that Wednesday's wasn't a lab error but warned us an IV drip was likely after the CT was sorted in the morning.  I missed her call on my new cellphone that afternoon but that's another story (57 yr old women shouldn't buy flash new technology).  I eventually got the message in the evening that the hospice were expecting Ian straight after the CT scan for a 4hr infusion of a drug to redress the blood/calcium problem.  So we got the CT under our belts and went to the cafe for a proper coffee and a sandwich for Ian who had been nil by mouth for 4hrs and then drove the 200m or so to the hospice.  There they had a bed and meal ready for Ian and a bag of fluid - and a hard seat and not so much as a cup of tea for the Dragon Lady at his side.  Luckily I knew the ropes from last time and retrieved leftover yoghurt from my breakfast out of the boot of the car.  I know my place.  Full-time carer/nurse 24/7/365 - unless Ian's at the hospice - then I become invisible and valueless!!!  Nurses came and went and the infusion was sped up (to let us go home early), then slowed down (Goodness, who sped that up!!) etc etc. and then Ian's evening meal was delivered (a little paper parcel of fish and chips which I watched disappear with a little dribble of saliver down my chin ) and then I got to drive us home on an empty stomach.  No, I tell a lie - the hell with Weight Watchers - I stopped at a dairy and bought us an icecream each!!!!  So a busy and stressful day but an OK day.

Yeah right!!  I don't know what time I heard Ian get up the first time and go to the ensuite.  No, not a peee, vomitting, full-on vomitting.  He returned to bed and shook and shivered and whimpered.  Shame on me I know but I was just desperate for sleep.  I didn't react, didn't turn to hug him like I would normally, I was just so sick and tired of this whole scary cancer "he's OK, he's not" journey.  Then at 4.19am he was up again and vomitting again.  I grabbed trusty Android phone and dialled the hospice.  I was barely awake but anxious not to take the flack this time for not reporting vomitting.  And I was bombarded with questions from the night nurse - what colour was the vomit, what time was the first, what drugs was Ian on, at what doses..... I got shirty.  I mentioned it was pitch dark, that I was in the bedroom and Ian was hugging the toilet, I hadn't a clue what colour the vomit was (and quite frankly didn't plan to find out as vomit is one thing I simply cannot handle).  As to what drugs was he on, for goodness sake, isn't that what their computer is for.  I was instructed to give Ian one quarter of a Nozinan (which he promptly threw up a while later but again I was almost comatose with exhaustion).

The nurse had said the palliative care nurse would ring after 8.30 and by 9.30am I hadn't heard so I rang and got a flea in my ear because the call to me was "on the list" but I hadn't got to the top yet.  After a curt exchange though we settled into a comforting conversation of 45mins and the nurse was helpful and reassuring.  She said another 1/4 Nozinan at 10am should help with sips of water and no food all day.

So I am on standby - terrified to have a much needed nap in case I sleep through another episode and feeling guilty that after the second vomitting when Ian came back to bed and turned to me for comfort I just couldn't give him any.  I thought they would demand I drive him over this morning and I just had to get some sleep.  I have driven the 30ml journey once before with only an hour's sleep after Ian had an allergic reaction to chemo 18mths ago and I don't plan to repeat that experience in this lifetime anyway.  So he's sleeping (lucky him) and I'm feeling selfish and stressed.  I realise now that this end of life journey is going to be much harder than I ever imagined.  I am seriously doubting my ability to nurse Ian at home - especially if there is vomitting or lack of sleep involved.  And with our business partners trying to shaft us with a ludicrously low price for our share of the business I really don't think I can afford to hire anyone to help me - especially when I don't know how long this phase of the journey is going to last.

So much hinges on Monday's CT report.  The blood/calcium indicates the cancer is in Ian's bones.  His awkward gait and difficulty bending suggests to me its in his spine.  But then I'm no doctor!!  Just the 24/7/365 drudge when the hospice aren't on duty   Do you sense a large dollop of self-pity???  You should.  I feel so sorry for me and I feel so very sorry for Ian.  We are nice people.  We don't deserve this....

I've been posting to other people, steadfastly ignoring my own situation.  We'd have to be blind to think Ian's no worse.  We have two blood tests in two days as proof and a looming CT result on Monday.  We had so much planned for the end of last week that I suggested Ian have the pre-Mon clinic blood test on Wednesday - less to fit into our hectic social calendar - yeah right!!  The hospice nurse came for her home visit on Thursday morning and noticed our bags packed in the hallway ready to stay the night before the CT scan (and prevent an early morning start and 30ml dash to the hospital).  She approved the "grabbing fun where you can strategy" but then said she might have to put a spoke in the works.  Ian's blood test from Wednesday had shown his blood/calcium was on the rise and was above the normal, safe level.  She was gobsmacked that he wasn't displaying all the symptoms she expected - nausea, vomitting, confusion etc.  We talked about the last week or two and when I said I was bombarding us both with chilled water to cope with the heat (and help me with my Weight Weighters/New Year's Resolution regime) she said that explained it - and that was the only thing that had prevented Ian having really bad symptoms.  Fancy that - good ol' H2O.  She asked for a blood test that afternoon just to be sure that Wednesday's wasn't a lab error but warned us an IV drip was likely after the CT was sorted in the morning.  I missed her call on my new cellphone that afternoon but that's another story (57 yr old women shouldn't buy flash new technology).  I eventually got the message in the evening that the hospice were expecting Ian straight after the CT scan for a 4hr infusion of a drug to redress the blood/calcium problem.  So we got the CT under our belts and went to the cafe for a proper coffee and a sandwich for Ian who had been nil by mouth for 4hrs and then drove the 200m or so to the hospice.  There they had a bed and meal ready for Ian and a bag of fluid - and a hard seat and not so much as a cup of tea for the Dragon Lady at his side.  Luckily I knew the ropes from last time and retrieved leftover yoghurt from my breakfast out of the boot of the car.  I know my place.  Full-time carer/nurse 24/7/365 - unless Ian's at the hospice - then I become invisible and valueless!!!  Nurses came and went and the infusion was sped up (to let us go home early), then slowed down (Goodness, who sped that up!!) etc etc. and then Ian's evening meal was delivered (a little paper parcel of fish and chips which I watched disappear with a little dribble of saliver down my chin ) and then I got to drive us home on an empty stomach.  No, I tell a lie - the hell with Weight Watchers - I stopped at a dairy and bought us an icecream each!!!!  So a busy and stressful day but an OK day.

Yeah right!!  I don't know what time I heard Ian get up the first time and go to the ensuite.  No, not a peee, vomitting, full-on vomitting.  He returned to bed and shook and shivered and whimpered.  Shame on me I know but I was just desperate for sleep.  I didn't react, didn't turn to hug him like I would normally, I was just so sick and tired of this whole scary cancer "he's OK, he's not" journey.  Then at 4.19am he was up again and vomitting again.  I grabbed trusty Android phone and dialled the hospice.  I was barely awake but anxious not to take the flack this time for not reporting vomitting.  And I was bombarded with questions from the night nurse - what colour was the vomit, what time was the first, what drugs was Ian on, at what doses..... I got shirty.  I mentioned it was pitch dark, that I was in the bedroom and Ian was hugging the toilet, I hadn't a clue what colour the vomit was (and quite frankly didn't plan to find out as vomit is one thing I simply cannot handle).  As to what drugs was he on, for goodness sake, isn't that what their computer is for.  I was instructed to give Ian one quarter of a Nozinan (which he promptly threw up a while later but again I was almost comatose with exhaustion).

The nurse had said the palliative care nurse would ring after 8.30 and by 9.30am I hadn't heard so I rang and got a flea in my ear because the call to me was "on the list" but I hadn't got to the top yet.  After a curt exchange though we settled into a comforting conversation of 45mins and the nurse was helpful and reassuring.  She said another 1/4 Nozinan at 10am should help with sips of water and no food all day.

So I am on standby - terrified to have a much needed nap in case I sleep through another episode and feeling guilty that after the second vomitting when Ian came back to bed and turned to me for comfort I just couldn't give him any.  I thought they would demand I drive him over this morning and I just had to get some sleep.  I have driven the 30ml journey once before with only an hour's sleep after Ian had an allergic reaction to chemo 18mths ago and I don't plan to repeat that experience in this lifetime anyway.  So he's sleeping (lucky him) and I'm feeling selfish and stressed.  I realise now that this end of life journey is going to be much harder than I ever imagined.  I am seriously doubting my ability to nurse Ian at home - especially if there is vomitting or lack of sleep involved.  And with our business partners trying to shaft us with a ludicrously low price for our share of the business I really don't think I can afford to hire anyone to help me - especially when I don't know how long this phase of the journey is going to last.

So much hinges on Monday's CT report.  The blood/calcium indicates the cancer is in Ian's bones.  His awkward gait and difficulty bending suggests to me its in his spine.  But then I'm no doctor!!  Just the 24/7/365 drudge when the hospice aren't on duty   Do you sense a large dollop of self-pity???  You should.  I feel so sorry for me and I feel so very sorry for Ian.  We are nice people.  We don't deserve this....

Dear Lorraine,

I'm on your side. After everything you have lived through you deserve as much tlc as Ian. I'd help you if we were neigbours. Ian sounds like his body has more cancer in it, how much more can you both cope with? It's not fair at all. People should be more thoughtful towards you. I hope you get some decent rest soon dear Lorraine I'm so sad for you. x

Two things Elkay: firstly no-one deserves this.  But some of us just get it anyway. And secondly if we carers don't look after ourselves or learn to understand our own limits then we're likely to come unstuck.  Not self pity, essential self-preservation.  With my husband in hospital at the moment I find some of the nurses give me funny looks because I come and go rather than staying 24 hours a day.  But a) like you I'm a sole carer: my family is a 7 hour flight away so b) if I get overtired or ill, what then?

the frustrating thing is being expected to do a lot of caring and report on things to the medical team, but without so much as daring to speculate on what *their* next move should be.

take care,

Expat

Re. reactions from nurses - here's a "funny" one for you - don't know what sort of carers they usually deal with at Ian's hospice but.....  One of the senior nurses came in to introduce herself and said immediately to me "Why don't you pop out and do some shopping??"  Like a spot of retail therapy would make the prospect of mets tumors in Ian's bones so much easier to cope with.  If it does help some carers, I feel very sorry for them and even more sorry for their loved ones.

Lorraine

Hello elkay,

I have been reading your story, I dont think I have replied to you as yet.  Can relate to what the hospice nurse said to you, she said the same to my step-mother, who did exactly that (went shopping) when Dad became an inpatient in the our local hospice (I lost Dad in 2012 to Oesophageal Cancer which after an attempt at a cure came back very aggressively in March of last year).  I was so angry at her (not that I have ever told her that), but on the other hand my sister and I spent much more time with Dad than she did, and were very grateful for it - we had some lovely times with him, despite everything, but Dad did used to ask for his wife sometimes, I covered for her and told him she couldn't sleep very well just now, but would be in later (My own thoughts is that she had not and probably still has not come to terms with her own mortality - this is a woman in her 60's).   I am sorry Ian and you are having such a rotten time of it just now, I hope things get a bit better for you both.  I also love to read about your strength in standing up to the medical and nursing staff when you need to, we had to do a bit of that too, but I was not quite so assertive as you have managed to be, I wish I could have been.  Katielouie

Hi Elkay,

Someone a fews months ago gave me a virtual shake up and I have no intention of passing it on but you are definitely not selfish, worthless or a drudge. You are a committed carer who is knackered and terrified and why not You are only human. No proper food, no proper sleep, no proper recognition by some people who should know better. What you need is a huge huge cuddle (its only virtual but am sending it anyway).  You must not feel bad about turning your back and hoping it will all go away.  Anyone who has been on your journey would feel the same and sometime I expect it will be me (I am only a year older than you and really related to your 'phone' phobia - I still give my landline number as never remember the mobile one and often wish it was in the bin just to give some peace).  I sincerely hope that Ian's next test shows some improvement for you both to take heart from but even so can you (not sure Its my place to suggest this but felt the need) get a couple of days respite care for Ian  so that you can take some 'ME' time. My Mum did this when my Dad was ill and whilst the fears do not  go away, you gain a little more strength to cope. You are a wonderful caring loving couple and this is such a hard time for you please take care and use us on this wonderful support forum to share your story and help with the ranting and frustrations that life is currently throwing at us.

In my thoughts

Regards Jules54

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

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