Thank you for taking the time to post.  How awful that your toddler has this horrible disease.  My hairdresser's little daughter had a motor neuron type disease and she had a really tough time coping with that, and the reaction of complete strangers and friends alike.  Ian's lucky he's had 61 pretty healthy years and he and I have had 35yrs together, certainly the best years of my life.  I hope, with your help, your toddler grows up and gets to follow his/her dreams.

Just off to bed with a  big mug of milky drink which I hope will knock me out - who knows, it might??  We covered lots of the issues you mentioned with the hospice nurse today.  Didn't need much discussion between us before she arrived because we'd covered most of it at Christmas when the oncologist said 6 rounds of Oxalyplatin hadn't helped.  The writing was well and truly on the wall and in our 2wks at a lakeside motel we talked and talked and talked.

But to watch Ian sign a piece of paper agreeing to "non-resucitation" was pretty hard to do. 

You are certainly right though about greeting Death at the door with dignity and on our terms.  Death is not welcome at all but he can't be refused entry can he??

Night night.

Nope, the door hasn't been built that will keep him (Death) out.

I think I've posted before about Mike. For legal reasons he had to speak the words about making him unconscious then turning off his breathing support (computer assisted speech doesn't count) . It cost enormous effort. As the family and the medical team sat in stunned silence after he'd worked his way through this, he added his last spoken word...."Bye-eeee" with his trademark twinkle in his eye.

So yes, the signing of the DNR papers must have been tough to be with, for both of you. It's another little waymarker you've passed. It doesn't necessarily say anything about how far the journey is, just makes it clear where it ends.

We're a long way from that ourselves, we've got lots of side routes and diversions to follow. I hope we can keep some of Mike's humour and tenacity right to the end. I hope you and Ian can.

Well done for the crying though, that's an important part of coping with it all.

Hope the milky drink was a comfort even if not a sleep provoker.

For what it's worth our thoughts are with you. Big hugs.

Russ 

hi elkay

I have found it difficult to get a balnce lately but it has helped me to read your story so i just wanted to say thank you.

Poor death-it is waiting for us all our lives but it is a testement to our love of life that we wish it away.

Hi Liz

Thank you so much for reaching out to me just now, when you've got such a huge emotional time.  I got a shock to see on one of your posts that your beloved George was actually born a year later than me.  That sure brings home how "young" George was and how much more of life he would have expected to enjoy.  I've read in "cancer help" books that each "first" is a huge hurdle to get over and that things get just a little easier once past that.  It helps, doesn't it, that you had a wonderful husband and soulmate?  I can't imagine how a woman copes who is left on her own after years with a man she didn't love or even like, maybe even being knocked around by him.  We have so much more to lose don't we?  But that's because we had so much more than lots of people.  I am grateful for 35 years 5 months of great marriage so far (after a lovely twelve month courtship) - that's nearly 36 1/2 years of happy memories to hold close even now, and Ian and I are still making memories together at the moment.  It's like a phoney war at the moment.  Treatment is over, no more visits to the hospital and for now the hospice nurse is going to keep in touch over the phone only.  Ian is a little fitter every day, a little less puffed after doing small chores.  We have just got back from eight days in the far north of the North Island and we stayed in a self-catering apartment by the sea with its own private jacuzzi/spa on the deck.  We sat for hours (yes, literally) in the spa looking out over the beautiful Bay of Islands, revelling in 17deg temperatures and sunshine while our friends at home shivered.  A highlight was a 3hr boat trip out onto a flat sea dolphin-watching.  Twenty dolphins frolicked and chased the boat and one turned on its side as it swam past and I'll swear it looked right into my eyes.  Even as the boat accelerated away towards the next scenic highlight the dolphins zoomed along between the boat's two big jet engines.  When at last it couldn't keep up, one dolphin leapt high out of the boat's wake - absolute magic - we grinned at each other and I'll remember that always. 

But now we are home again (although still in the sun thanks to a "High" on the weather map) and instead of dolphins frolicking, we have the three kittens and their 6.5kg "Auntie" Rosie.  Ian's been cutting kindling off prunings I have done of trees and the kittens are redistributing the kindling all over the patio.

Happy times for now, eh Liz, and you're right, they'll never come again - but they are here for now.

Hope tomorrow is a little brighter for you Liz, and the next and the next.  The loss of George has left a huge hole in your world and your heart - but you had him in your life didn't you and it was wonderful wasn't it?

Lorraine

hi lorraine i hope and pray that everything is all right, since iv noticed you havent posted lately, please let me know how you also your loving husband ian are doing, just wish that you stayed closer keep in touch lorraine, we are all here for you, i only know feel your heartace, 36yrs is a long time so much similear to mine, god bless  yous both, im thinking of yous both, lots of love, liz xxx

Hi Liz

Nice to hear from you.  Been having a tough few days and getting a bit down.  The hospice nurse said to keep a daily diary noting any symptoms or pain Ian is having and it's scary when there is stuff to write down - it's there in black and white.  Nothing serious yet - just back aches and tight, bloated belly - and because "they" can't or won't tell us where the cancer is likely to grow next we don't know if that's significant. 

Today we were sitting outside in the winter sun (after days of cold and rain) and we both turned to each other and said let's go somewhere for lunch.  We've always been doing that - thinking of something at the same time - spooky and wonderful at the same time.  I drove us 30 miles to a nearby town and we tried a new cafe and had pork burgers but had no room for dessert   Then we shopped for groceries (and a few treats) and a few bottles of wine because Ian does love his wine.  He only drank the once while he was on chemo - on that helicopter trip we did on his birthday in June   We both felt happier in ourselves when we got back home and of course the Three Musketeers/Kittens were waiting to be let loose on the garden again until dusk when they were bribed to come inside with yummy treats.  My little girls haven't been speyed yet so no big nasty tom cats are going to take my little girls' virginity while I have breath in my body    All three kittens (and their 3yr old tabby "aunty") are sound asleep in front of the fire as I type. 

You sound a little happier in yourself Liz - I do so hope you are.  One step at a time eh Liz?  Take care.

Lorraine

hi lorraine some nights i just cant sleep, yet oh how i hate being all alone at night, something iv never done within the 35yrs of being together ,that is sleep with a night light on, where as since my huby passed away, the nights are so cold, long, dark, lonely, they say lorraine that time is a healer, in my own experence a year has gone by still feels like yesterday, i just logged into my husbands bebo, then my tears started to fall, on his profile his best interests were spending time with his wife, i know my husband is always around me, i can feel his precence near me, not just that my dog sits stares at the wall for ages,

i hope pray everything is well as your in my thoughts always, iv been where you are now in your life nor is it easy, but as i told you spend, treasure each every moment together, take each day, as it comes, when pallative care nurses came to our house, my husband told them he didnt need them, but he did insist that they be there for me, well lorraine please keep in touch, may god give you the strengh to continue to care, look after your husband ian.

take care lots of love to both of yous, god bless yous both anytime you need to taik you can phone me. LIZ                                                

Thank you Liz.  We've both had a good day again today.  Friends of 40yrs asked us out to a cafe for lunch and Ian and I made sure not to let the cancer word into the conversation.  We laughed and joked and keep it light-hearted.  But then when Ian went to the toilet, Lois asked how things were and I told her the hospice nurse expects Ian will get very ill, very soon and she was upset.  But she did ask - and I'm not in the habit of lying to protect people.  And yet she said they wanted to see us again - so all credit to them because it's a tough journey for those who "travel" with us.  Plenty of friends and many relatives have turned away, not wanting to "travel" with us and it's their loss because Ian's bravery is an inspiration.

Some might say you were looking for trouble looking at George' Bebo - but not me - those tears were good for you and it was lovely to see those words wasn't it - that man loved you and enjoyed spending time with you.  And I am not religious at all - a complete and utter non-believer - but I am open to the spirit world.  I have told Ian that when I travel in the future (because he has instructed me to keep up "our" overseas trips) I believe he might even come along with me.  Does that sound barking mad?  I don't care

I'll keep a note of your number Liz.  It would be way too expensive to ring from here in New Zealand.  But you never know - maybe I'll get to the UK one of these days and be able to come and give you a hug.

Lorraine