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
  • I'm cheating here - sending you guys a blanket thankyou - but I'm crying at the moment for the first time since that clinic on Monday - so you've done well, because I'd not managed to cry and get rid of some of the stress till now. 

    THANK YOU, THANK YOU, THANK YOU.

    Ian's getting better each day, still getting to quote him "buggered" with some exertion, just not with the least tiny exertion like last week.

    You are all stars......  I'll post again soon, better and to each of you.


Reply
  • I'm cheating here - sending you guys a blanket thankyou - but I'm crying at the moment for the first time since that clinic on Monday - so you've done well, because I'd not managed to cry and get rid of some of the stress till now. 

    THANK YOU, THANK YOU, THANK YOU.

    Ian's getting better each day, still getting to quote him "buggered" with some exertion, just not with the least tiny exertion like last week.

    You are all stars......  I'll post again soon, better and to each of you.


Children
  • Hi Lorraine,

    Don't feel obliged to send individual replies.  So pleased to hear that Ian is feeling less b*ggered too; that's good for both of you. It's weird when you hear 'you're looking very well' addressed to someone who has cancer; I hope it's makes him feel even better.

    You said on a different thread that Ian's tumour was being tested to see if Erbitux or Vecitibix might help. My husband's side effects from that (I think you've read my posts about it) were among the most extreme the oncologists had seen; in the majority of patients it isn't that bad.

    Expat xx

  • Just on our way to bed with a milky drink after the strangest day.  Not often you get to meet your husband's hospice nurse for the first time..

    Thanks for the info on the Erbitux side effects.  That helps.  Ian's thinking he will give it a go for a while anyway and I think it will help knowing that his side effects mightn't be that extreme.  The Avastin hardly affected him until this last sixth cycle, and even then we don't know how much of that bludgeoning was because of the Irinotecan.

    Thanks again.

    Sorry to hear about the low count and postponed chemo.  Ian was really lucky that it never happened to him but we saw a few people sent away and you could see it threw them.  I've still got everything crossed for your return to the Motherland!!


  • Dearest Elkay, all that you have been through makes you the amazing women you are today, and all I can say is if some couples lived together for a thousand years they will never have what you have Godbless you Both XXXXX