Thanks for your lovely post gardenlady.  Interesting to hear of your daughter's side-effects so long after radiotherapy.  We weren't given much information and when Ian was having the retching, Radiation Oncology positively ducked for cover and said he must have food poisoning.  It's a shame that people who dispense treatments can't acknowledge the harsh effects they can have   The huge belly hasn't subsided much so until the CT there's no knowing what's happening "inside."  The hospice oncologist said there would be lots of damage internally and I haven't researched it on the Net but I suppose the body protects damage like that with swelling and maybe fluid.  I just know this huge belly is affecting Ian's mobility and flexibility and his pride.  It's a hard thing for a fit/active man to have to ask his wife to put his socks and shoes on   That's the kind of thing that hits Ian harder than the serious side-effects.

So it's a lovely sunny day today, but with a refreshing cool breeze too.  Ian recorded an Ozzy 20:20 cricket match overnight so it's time for a "real coffee" and a spot of cricket before I dish up Day 3 of roast lamb and new potatoes - Chef Newbie I am not!!!!

Thanks again, gardenlady

Thanks for the good wishes Jules.  When we missed out on fireworks last year because torrential rain made them impossible, I thought "Well that's it, we'll never have another New Year's fireworks together again."  Oh, me of little faith!!!!   So yes, on we go, day by day, having a laugh when we get the chance (or the energy) and just getting by on tough days.  Yes, long may our journey together be - no matter how winding the path....  All the best Jules,

Lorraine

Hope you had a Happy New Year too and that you are in a "good place."  Isn't it sad that we should have such guilt over our dealings with the health system, no matter which side of the planet we live?  If only they could learn not to treat everyone with a one size fits all approach.  And I will certainly try to keep you smiling from time to time - can't help myself really - Ian and I just seem to find the black humour in all sorts of grotty situations.

Take care Poppypetal!

Lorraine

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