I hoped I would never post this discussion

Yesterday we got the news we never wanted to hear.  My friends on this site know about my husband's 6+ year battle with colon cancer that had spread into his lungs by the time it was diagnosed.  The oncologist was sure Ian's first bludgeoning with Oxalyplatin IV chemo and Xeloda (5FU) chemo tablets would buy him 1-2yrs remission.  Ian dug deep and slowly got better and stronger and went back to his hard physical job as a truck mechanic and we went back to our "normal" lives together knowing that time was precious. 

My friends on this site have (no doubt) got sick of hearing about the wonderful times we had together in that remission that was so hard fought for.  I think I have convinced Newbie that yes, it is all worth it.  It's such a cruel battle but remission is so sweet, extra sweet when it is for so long as Ian's was.  It is so cruel that lots of people who have just as much to live for are denied such a long remission. 

5yrs 2mths after Ian went into remission abdominal pain and rising tumor markers prodded the system into action again.  On 30th August last year Ian began the Oxalyplatin/Xeloda combo again which ended on 23rd December with the news it wasn't working this time and the dozen or more tumors being measured were just getting bigger and bigger.  Between chemo regimes we snuck in a trip to celebrate our 35th wedding anniversary - no cancer was going to spoil that lovely five day trip.  Then on 22nd February Ian began Irinotecan chemo and we started paying for Avastin because it isn't publicly funded in New Zealand.  With each round of treatment Ian has got steadily more beaten by side-effects but in the week between chemos early this month we again thumbed our noses at cancer and flew to beautiful Queenstown in New Zealand's South Island and to celebrate Ian's 61st birthday we chartered a helicopter and flew over our stunning countryside and picniced high on a mountain top.

But the oncologist said three weeks ago that the Irinotecan must end - that it was, and I quote, expensive and making Ian ill.  He said the Avastin that we were paying for must also end.  And so we walked out of the chemo day ward on 13th June dreading what was to come.  In the days that followed Ian was desperately low, a combination I think of side-effects and the knowledge that active treatment was coming to an end.  After three days without a shower, shave, or dressing let alone much food he dragged himself out of bed, back into daily life again. 

Ian had the scheduled end-of-treatment CT scan on Friday and yesterday we went to the follow-up clinic to get the result.  We were told gently but firmly there was no more publicly-funded treatment available to Ian that would work.  We were (for the first time) shown the actual CT images, taking a virtual flight through Ian's body, flying past all the horrible, dreaded cancer tumors in his lungs, hovering over the collection of lymph nodes in his abdomen that are fat and swollen with cancer cells waiting to "get at" his liver which at the moment is amazingly clear.  People on this site had talked on seeing such images and we had never been given the opportunity.  How ironic that on the day the New Zealand hospital system ditched Ian (because that is what they did yesterday) we got to see those fascinating, horrible images.

Now Ian has been officially referred to the regional hospice.  We are lucky that one of the social workers there was Ian's social worker for 5+ years at the hospital so she knows many of the problems we have faced during this fight.  But it's still a very scary "line in the sand" time for us.

My brain has known since May 2006 that this time would come - my heart had it's ears and eyes covered...

Does anyone have any advice or help for me?????  I've dished out advice and hope and comfort willingly in the four months or so I've been here on this wonderful site.  I'm a giver, that's my nature.  Now I want to be a taker for once.

  • I think Lorraine that Ian is dreaming of chocolate Easter bunnies running through sunny fields - a wonderful image for you both to hang on to. Good that you had a 'comforter' close at hand when he tried to frighten the life out of you. Awesome image of your togetherness as you admire your beautiful view. Thinking of you both. Jules

  • (((((((Lorraine and Ian)))))))))

    had a chuckle at him ignoring you - and at your house being full of easter bunnies.

    I love the comfort and warth of my husband's body and I'm sure you're savouring every second you have cuddling Ian. I would be burying my nose into his neck and savouring his smell as well, my husband's smell is like no one else's and means home to me.

    Thinking of you and all of those little moments you have left with Ian

    x waterbabe

  • Hi Sueps,

    Yes I wanted to crash the car with us both in it more than once to stop the pain John was going through & so we would go together. But like you I would have missed the time we did have left even though it was hard seeing him suffer we still made more memories. I feel like two peolpe & felt like this when  John was still here, one who is strong & fight,s on & the other who,s weak and just wants to die. I tell myself John would want me to make a new life for myself as I would for him if it had been me who had gone. But it,s so hard we did everything together even work, spent more or less 24/7 together. I need to live for us both now I suppose.

    Your Husband sounds great go out & get it type, mine was like thats as well.

    So I shall take a leave out of you book & try to hang on in there for him as well as myself.

    Thank-you for your post it,s helped me, it also helps your not on your own having lost so much & feeling the way I do.

    Gioux

  • Another early start for us - 4.30am this time. We had a lovely long chat about lots of silly rubbish.  One of us knows what he was on about; the other hasnt a clue but loved listening anyway. We are facing incontinance issues now - bowel had a turn last week - bladders turn now.  I have amazed myself again at my compassion and patience - and mopping up skills hahaha.  Ian told me a long drawn out story about how it happened then chucked me uder the chin and said "It was cockpit error". Yep, i guess it was!!  I asked ian if he was hungry and he was and i was ravenous ~ i was ravenous ~ nothing new there so we have had two pieces each of hot buttered grainy toast with grapefruit marmalade.  The teas in the pot to pour out but my fellow picnicer has fallen asleep.  What is it they day about drinking alone.



    Another night almost over ~ another clear rainless sunny day in NZ to come. A very dear friend collapsed on Sat. as he was having a shave to come and visit his old friend Ian.  Jim had huge heart problems but thought he`d be ok once the drugs sorted things and he could have a new heart valve.  None of us dreamt he would be the first to go.  Life has some scary twists and turns!!! One day when Jims wife came to see us about two monthd ago she sternly told me Ian was dying and it was time to let him go.  Now shes the one saying goodbye to her husband of 52yrs.

    Time for that cuppa.  Better wake the Bunny Hunter for some mote pearls of wisdom.

  • How lovely to wake early and be treated to hot buttery toast - my mouth watering as I read and for Ian, despite his frailty, to still have an awesome sense of humour - cockpit error - just genius, whether he remembers it or not.  Of course if your co-picnicer does not remember you will be having a second breakfast and who the hell cares as its another meal together. Stay close and your patience is so rewarded. Lots of hugs coming your way. Jules

  • Hiya Gioux,


    Every day now is bittersweet. I don't want to stop thinking about my lovely boy, Ray. Everything I am doing has a strong connection. I am sorting out the probate so his (grown up) kids will get their proper share of funds. Perparing the house for a summer sale as it is too big for me - all as we planned. I sit with my dinner next to his picture (although SOMETIMES do take the opportunity to sprinkle on parmesan - which he hated!) . It seems like the only way forward for my survival is too let go of him a bit . But I don't want to. My brother very kindly took me out for a couple of hours last night - just his local pub with a singer. Oh boy was that hard. Then horror of horrors someone asked me if I wanted to dance - hah,  I DON'T THINK SO I am a married woman. I absolutely do not want anyone else.


    I keep trying to think - how would Ray be dealing with this. He was very strong and hardly faltered throughout those last few appalling months of imminent exit. He was determined not to leave the party before he really had to - how can I do less? My mum, wise old bird that she is, says I have to live for both of us now. Not sure quite how to do that - swig down a pint of real ale??, go fishing?? , but I think I know what she means.


    I am  working on one day at a time - it works apparently for AA . I promised him I would sort stuff out and I will,  if then when finished it is still all too hard then I will reconsider my position. But how dreadful when our partners have fought so hard to stay with us to just insult them by throwing away out lives. Please G*d it will get a little easier -  I am only four weeks in. Although, of course, when living under the shadow of early exit  the grieving process starts long before it becomes reality. 


    I am so glad I found this forum - people who REALLY understand what you are going thru and not too polite to talk about it. I admire ELKAY & NEWBIE so much for their honesty. Glad to find you as well Gioux.

  • Hello Elkay,  I am thinking there is a very strong link between how strong and brave our boys are, with how strong and brave we are/ have been. One of the amazing things of being in a close relationship is that you often feel you are sort of "one person/ entity" not sure where you end and they begin. I realise now that a great deal of the strength Ray had was because I was there for him , every minute of every day since our nightmare began. We only had 2 years - start to finish. It is quite obvious that Ian draws such strength from you. The price we pay, of course, is that it often feels as if we have the cancer - indeed many a time I have said to Ray "If I could do it for you I would". I think now, that is exactly what I am doing. Things have reversed and I am still part of a couple, though one of us is very quiet now!. His strength and influence is what is carrying me through. And most strangely my offer to take the pain for him is now a fact. He is not hurting and I am. It dawned on me yesterday that far from me just suffering pointless intolerable pain of grief - I am actually carrying his pain so he doesn't have to.


    If there is very little enjoyment left to be had "at the party" then maybe it is not such a terrible thing for them to go home to sleep for a bit . Our difficulty is we are left at the *** party by ourselves. I am thinking that as part of a close couple - (which I suspect we always will be whether others can see our other halves or not) it is now our turn to be the ones who need support and love. Yes, friends family and this forum are all there but most importantly  I can still feel Ray's love coming through loud and clear - it has not gone away and I don't believe it will.


    This time for you is challenging beyond belief but we are well practised methinks.

    luv sueps

  • Hi Sueps,

    How right you are in all you say !! I told my husband I wish I could have had the cancer instead. Yes I,v also thought how are pain goes on now they are pain free & yes it,s not much of a party without them is it. I used to feel John & I were like one person because we were so close & now feel like half a person. I told John before he died if I could shorten my life by however many years to give him more years for us to share together I most certanily would have, with out question that I muh I loved him. I only wish I could have done that.

    I love your messages they always bring a smile & make me think in a different way.

    Lorraine,

    I sure Ian is drawing strengh from you ,I,m sure my John did as well as other,s have. I,m sending my love & I,m thinking of you !!

    Love Gioux

  • Hi Lorraine,

    Don't come on the site too often now but pleased to see that you and Ian are still hanging on in there.  It sounds like things have gotten even more difficult for you both, although you always knew they would, and my heart goes out to you.  Sorry you are both having to experience this difficult time.

    Love, hugs and my very best wishes

    PoppyXXX

    Also to all of your furry friends.

    P.S. Have you had contact with VickyG at all?  We had contact after her hubby passed but not recently. Think about her often too........Hope she's okay

  • HI EBERYONE

    KEEP TRYING TO POST VIA CELLPHONE SO I DONT HAVE TO LEAVE IANS SIDE AND KEEP LOSING POST SO WILL TRY ONE MORE TIME.

    THIS IS HELL - NO OTJER WORD FOR IT. THE AGONY DESPITE MASSIVE DRUGS IS INTENSE. IAN HADNT SPOKEN FOR TWENTY FOUR HOURS TODAY BUT WHEN HE HAD TO BE MANHANDLED BY THE VISITING NURSES HE BEGGED AND BEGGED THEM TO STOP. THOSE MAY BE THE LAST WORDS I WILL HEAR HIM SPEAK.

    I WILL POST FULLER ONE DAY AS TO MY REASONS FOR DAYING THIS BUT...

    NEVER MAKE A NAIVE PROMISE TO KEEP SOMEONE AT HOME WITHOUT DOING 24HRS AT A HOSPITAL OR HOSPICE WITH SCANT SLEEP AND LITTLE FOOD...

    AND THINK LONG AND HARD ABOUT AGONY WHEN DEATH IS JUST DAYS AWAY IN ANY CASE - AND IF YOU CAN SEE WJERE I AM COMING FROM, JOIN ME IN A CAMPAIGN FOR INFORMED CONSENT BY TJE PATIENT FOR LEGAL EUTHANASIA.

    I HAVE A COAT CUPBOARD FULL OF DRUGS BUT I DO T KNOW WHAT QUANTITY OR CO.BINATION WOULD ACHIEVE A PEACEFUL RELEASE FOR IAN. I WISH I DID.