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.

Parents
  • 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.

  • 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 Poppy

    No wish to crash this thread, its so not the place but thanks for asking am OK - not been great but getting there. You know how it is...xxx

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