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.

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  • THANKS TO TRUST ANDROID PHONE - AND ENOUGH PRACTICE TO NOW BE ABLE TO USE IT WITHOUT HAVING STEAM VENT OUT MY EARS WITH FRUSTRATION !!! - I CAN UPDATE MY POSTS.

    HOW LUCKY IAN AND I ARE RIGHT NOW.  ON HOLIDAY - YET AGAIN- AFTER LAST MINUTE DRUG-CHANGES AND THEN DOUBLING OF THOSE DRUGS - ONLY 100 MILES OR SO FROM HOME BUT STILL A HOLIDAY.  PROBABLY THE LAST TOGETHER BUT I'VE THOUGHT THAT LOTS OF TIMES BEFORE AND YET WE'VE BEEN ABLE TO SUCK A BIT MORE FUN OUT OF LIFE AGAIN AND AGAIN. 

    IAN CAN ONLY WALK VERY SHORT DISTANCES NOW. HE MANAGED A FLIGHT OF STAIRS TO A WONDERFUL RESTAURANT YESTERDAY BUT I COULD SEE WHAT THAT COST HIM AND HE REALLY STRUGGLED TO FIND THE ENERGY AND ENTHUSIASM TO CHOOSE, LET ALONE EAT THE GORGEOUS FOOD. LAST NIGHT WHILE IAN SNOOZED IN THE HOTEL I WENT TO A PLAY 5MIN WALK AWAY. IT WASNT VERY GOOD BUT I VALUED THE CHANCE TO "TEST MY WINGS" AT DOING THE STUFF I ENJOY BUT ALONE - AND I SPENT THE INTETVAL RINGING IAN TO TELL HIM THANKYOU.  HE HAD STRICT INSTRUCTIONS TO RING ME IF HE HAD PAIN OR BREATHLESSNESS (BECAUSE THE NEWEST FOE IS BLOOD CLOT FROM A HEART VEIN BEING SQUASHED BY THE "MASS") AND I HAD MY PHONE SET ON SILENT AND VIBRATE AND I CLUTCHED IT TIGHTLY FOR TWO HORS!!!  IYS ALL ABOUT COPING STRATEGIES...

    SO TOMORROW WE RETURN HOME - AFTER HOPEFULLY BOTH OF US ENJOYING ALAN DAVIES SHOW TONIGHT.  OUR NEIGHBOUR ADMITTED BY TEXT LAST NIGHT THAT OUR FURBABIES ARE LEADING HER A MERRY DANCE AT BEDTIME EACH NIGHT. I HAD PROMISED HER ONE BOTTLE OF PROSSECCO AS REWARD - NOW I THINK I HAD BETTER BUY TWO HAHAHA

    11AM HERE IN SUNNY NZ - BETTER SHIFT MY LARGE, SORRY POSTERIOR - HOUSEKEEPING WILL WANT TO SORT THE ROOM AND WE ARE BOTH STILL IN BED LOOKING OUT ACROSS THE PRETTY HARBOUR.  BRSIDES I HAVE PROSSECCO TO BUY - AND MAYBE A THIRD BOTTLE TO CHECK FOR QUALITY-CONTROL.

    LORRAINE

  • Hi Lorraine, glad you managed to get away to your holiday.  I'm eager to know, what was the play so we can all avoid it?  Did you manage to get to see Alan Davies? 

    Lyn  X

  • HIYA

    MISSION ACCOMPLISHED.

    I FORGOT TO SAY IN MY ANDROID POST I BOTCHED THE DATE OF THE SHOW - ALAN DAVIES WASNT WED 6TH BUT TONIGHT. IAN STAYED IN THE ROOM ALL DAY AND ONLY WALKED FROM THE BED TO THE BATHROOM THEN TO THE BALCONY FOR LUNCH AND BACK TO BED. IF THERES ONE THING WE HAVE CAUGHT ONTO VERY FAST ITS PICK ONE ACTIVITY FOR THE DAY. IAN SAVED HIS BATTERIES FOR SITTING IN THE SHOW.  I GOT US A TAXI FOR THE 4MIN DRIVE TO THE THEATRE BUT HE MANAGED A VERY QUIET SHUFFLE BACK TO THE HOTEL AFTER THE SHOW.

    AND ALAN DAVIES SHOW...... WHAT CAN I SAY.... MY CHEEKS ACHE FROM GRINNING AND I HAVENT HAD SO MANY BELLY LAUGHS IN WEEKS... NO MONTHS!!!!  I AM SO GLAD WE CAME AND SO GLAD IAN DUG SO DEEP - YET AGAIN.  HE LAUGHED AND LAUGHED AND IT WAS SO GOOD TO SEE THAT HAPPENING.

    SO NOW ITS 11PM AND I HAD BETTER GO TO SLEEP READY FOR THE DRIVE BACK TO OUR REAL LIFE.  AND TRY TO SORT THE FURRIES AND THEIR NOCTURNSL WANDERINGS!

    NO FEAR OF HAVING TO AVOID THE PLAY FROM LAST NITE - I DOUBT IT WILL EVER LEAVE NZ SHORES. IT IS "KINGS OF THE GYM" SET IN A NZ SCHOOL GYM TEACHERS OFFICE.  I LOVED THE LAST PLAY BY THE PLAYWRIGHT BUY PERHAPS HE SHOULD HAVE RESTED ON HIS LAURELS HAHAHS.

    NITE NITE!!!!

  • Hello,

    Glad you managed to get to your Alan Davies show to celebrate your 36th anniversary.  I know what you mean about 'saving your batteries' - my Dads illness made him more and more tired, but we just did what we could as a family in the times when he was awake to have a laugh and joke with him and make those times as special and meaningful as we possibly could.

    If your cats (I too have a 'fur family')  were in the UK just now it would have solved the problems with their nocturnal wanderings,  we have had a bit of snow lately and my cats meow at the back door to get out, but when they see the snow out there they take one look and change their minds and go back to the couch!

    Katielouie x

  • Hello Elkay

    Was so pleased to read yet another goal reached and enjoyed, you are an awesome couple. The stamina both Ian and you are finding to fight (and enjoy) the precious time you have together is truly amazing. Wishing you more laughter as you cope along this difficult journey.Jules

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  • Hello Elkay

    Was so pleased to read yet another goal reached and enjoyed, you are an awesome couple. The stamina both Ian and you are finding to fight (and enjoy) the precious time you have together is truly amazing. Wishing you more laughter as you cope along this difficult journey.Jules

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