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
  • Hi all

    Ian died 5 1/2hrs after my last posting. Its been tough and the pains been raw since. He never spoke or opened his eyes snd I couldnt hold him because of the pain.  And I didnt get my smile....

    Will post properly soon.

    Love ya!!!!

  • Dear Lorraine,

    Like many others on this forum who followed your story and your fight, we at Cancer Chat are very sad to hear Ian has passed away. Through your beautifully written posts, we all felt we got to know you and Ian very well. Our most sincere condolences and we all wish we could give you a real hug all the way to New Zealand, but I guess we will just have to send hugs through our various computer screens hoping they will reach you wherever you are. I, like many others here, have been touched by your account of Ian's journey, and by your love for him, how well you have been looking after him all this time he has been unwell (and before too!) and one must not forget the love he had for you as well, as his final words demonstrate. You are one brave inspirational lady, Lorraine, and you have touched so many people on this forum I wanted to say thank you as well for all your contributions on Cancer Chat.

    Don't hesitate to come back here anytime you need to talk. You have made so many friends here they will be there for you in a flash-  as will we moderators!

    Warmest wishes in this difficult time,

    Lucie, Cancer Chat Moderator

Reply
  • Dear Lorraine,

    Like many others on this forum who followed your story and your fight, we at Cancer Chat are very sad to hear Ian has passed away. Through your beautifully written posts, we all felt we got to know you and Ian very well. Our most sincere condolences and we all wish we could give you a real hug all the way to New Zealand, but I guess we will just have to send hugs through our various computer screens hoping they will reach you wherever you are. I, like many others here, have been touched by your account of Ian's journey, and by your love for him, how well you have been looking after him all this time he has been unwell (and before too!) and one must not forget the love he had for you as well, as his final words demonstrate. You are one brave inspirational lady, Lorraine, and you have touched so many people on this forum I wanted to say thank you as well for all your contributions on Cancer Chat.

    Don't hesitate to come back here anytime you need to talk. You have made so many friends here they will be there for you in a flash-  as will we moderators!

    Warmest wishes in this difficult time,

    Lucie, Cancer Chat Moderator

Children
No Data