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
  • Good morning from me, good evening to you (heavens I sound like the Two Ronnies!).

    The night has passed without any dramas.  I waited till 11pm till I went to bed to be sure I was good and tired.  I put a triple dose of Sleepdrops under my tongue and when my head hit the pillow I was gone - blessed and wonderful lala land

    I've woken at 8.15 and Ian was awake already.  He is very emotional.  When I told him our neighbour had spent 3hrs with me yesterday he got all misty-eyed.  When I told him Expat's husband was "in the wars" he welled up again.  So I guess I'll be watching what I say and find some balance in my news-casts!!

    I so appreciate your messages, Expat, Katielouie, Jules 54 and Swedes.  I get annoyed that the few friends I have left react to yesterday's situation with a text message. You guys post on a Discussion so it's not too dissimilar is it?  But you are 12,000 miles away!!  Some of my friends live 1/2 a mile away!!  And it is all about not being able to face their own mortality!!!!!

    A very, very good thing is that Ian says he feels this morning more energetic than he has in weeks.  So I'm thinking that the blood/calcium was having an effect - tiredness is one of the wimpier sounding side-effects that I hadn't even taken any notice of.  But in saying that he feels more energetic doesn't actually mean to say he's (a) out of bed or (b) doing anything energetic.  It's just how he feels whilst lying horizontal in bed

    So I've put the jug on for a pot of green tea (well and truly steeped to get maximum antibodies etc. per an internet site I was reading) and I will go and enquire what Sir would like from today's breakfast menu.  Perhaps we are back on an even keel again for a little while.  Sad thing is that means we've got to go through all this (or similar again) very soon.  I think I have found the perfect torture for a loving wife

    Your suggestion of ME time sounds wonderful and scary at the same time Jules54.  I took 3/4 hr of ME time twice during the "radiation wars" a couple of months ago.  The body was absent from home but the mind was very much at home with Ian and there was no comfort or pleasure to be had, for me anyway.  And I have 30 yrs or more ahead of me alone - I don't want to start now!!  Hark at me - now who can't face her own mortality - so correction! I think I have 30 yrs or more!!!

    Nite, nite all - hope you all sleep well - thank you.

    Lorraine

Reply
  • Good morning from me, good evening to you (heavens I sound like the Two Ronnies!).

    The night has passed without any dramas.  I waited till 11pm till I went to bed to be sure I was good and tired.  I put a triple dose of Sleepdrops under my tongue and when my head hit the pillow I was gone - blessed and wonderful lala land

    I've woken at 8.15 and Ian was awake already.  He is very emotional.  When I told him our neighbour had spent 3hrs with me yesterday he got all misty-eyed.  When I told him Expat's husband was "in the wars" he welled up again.  So I guess I'll be watching what I say and find some balance in my news-casts!!

    I so appreciate your messages, Expat, Katielouie, Jules 54 and Swedes.  I get annoyed that the few friends I have left react to yesterday's situation with a text message. You guys post on a Discussion so it's not too dissimilar is it?  But you are 12,000 miles away!!  Some of my friends live 1/2 a mile away!!  And it is all about not being able to face their own mortality!!!!!

    A very, very good thing is that Ian says he feels this morning more energetic than he has in weeks.  So I'm thinking that the blood/calcium was having an effect - tiredness is one of the wimpier sounding side-effects that I hadn't even taken any notice of.  But in saying that he feels more energetic doesn't actually mean to say he's (a) out of bed or (b) doing anything energetic.  It's just how he feels whilst lying horizontal in bed

    So I've put the jug on for a pot of green tea (well and truly steeped to get maximum antibodies etc. per an internet site I was reading) and I will go and enquire what Sir would like from today's breakfast menu.  Perhaps we are back on an even keel again for a little while.  Sad thing is that means we've got to go through all this (or similar again) very soon.  I think I have found the perfect torture for a loving wife

    Your suggestion of ME time sounds wonderful and scary at the same time Jules54.  I took 3/4 hr of ME time twice during the "radiation wars" a couple of months ago.  The body was absent from home but the mind was very much at home with Ian and there was no comfort or pleasure to be had, for me anyway.  And I have 30 yrs or more ahead of me alone - I don't want to start now!!  Hark at me - now who can't face her own mortality - so correction! I think I have 30 yrs or more!!!

    Nite, nite all - hope you all sleep well - thank you.

    Lorraine

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