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.

  • Dear Lorraine,

    I am thinking of you and Ian often and I hope more can be done to control his pain.  Even though Ian may not be speaking to you, remember that he can probably hear you although you may have to speak up.  This goes against the grain I know - i had this urge to speak very quietly and calmly - but when I think back to my husband's last 48 hours or so I realise that the (excellent!) assigned nurse and the palliative care doctors really used to speak up and he would open his eyes and react to their questions. Maybe just with one word or a grunt or a facial expression, but a response anyway.  Sometimes I wish I had spoken up more myself.  Try music if you can - the last coherent thing my husband said was about music; this was the day before he died. I had finally got my Ipod to work through a speaker thingy in his room and put on Eric Clapton Unplugged and asked if he wanted to listen or not, and he said 'turn it up.'

    You're in a hard place. I have never understood why when someone has such a short time to live they cannot as a matter of course do everything possible to control pain; there is no risk of addiction;  maybe a higher dose will hasten the end by a matter of hours, but those hours will be more comfortable for the patient and so much less distressing for their loved ones.

    I have to stop here as I'm at work (...)

    Expat xxx

  • It's just awful, awful awful, we've got to stop being merciless at times like these, I totally understand where you're coming from. My thoughts are with you both. Eat something please. xxx

  • Hi Lorraine..Just to say thinking of your during this hard journey. It is really so cruel that life has to be taken away in such a way and do hope that they can up that pain relief. Its so not fair to witness such sufferingJules.

  • Lorraine,

            I am praying that Ian's suffering/pain stops soon. I am also thinking of you and your suffering and send you caring thoughts. Annabel.

  • Oh Lorraine xxx  i wish i knew those amounts and combinations too.

    Life is hard, please God we will meet our loved ones again.

    Love Debxxx

  • Hi all

    I am sitting in the late afternoon sun with the love of my life fighting for every breath , a 39deg temp raging, a bedsore on his heel because its too late to move him to a flash pressure-free bed without causing horrendous pain.  Ians hospice nurse has only seen two other people in her long vareer with such bone pain. Any movement of Ians back or legs is awful. Yesterdays change of wet bedding & fitting of dry nappy and new uridome was pure agony. When he cried no no no pain pain stop stop my heart was breaking.  Todays uridome required no movement and there had been no leakage so no wash/nap/linen change.  I commented to several people in Ians hearing that those cries would haunt me ad his last words.

    As lyn_ho knows Ian and I often had picnics at 5am and it continues to be Ians most settled, slightly-lucid time. This morning I woke in my single bed parked beside Ians electric bed to different breathing and another sound.  How to type it???

    Sort of: aaaaah aaaah oooo. Over and over and over.

    Perhaps I am a bit slow on the uptake - but it was 4am - but it suddenly occurred to me it was:

         I.  LOVE. YOU,      I. LOVE YOU.....

    I recited it back over and over and got an eyebrow lift.  Nothing wjll stop me grom belkeving THOSE ARE IANS LAST WORDS.

    Thank you for your support you guys. It means the world to hear mylittle bicycle bell noise on my phone and find a lovely message for me.

    And I am humbled by the number of viewings of Ians fight.  I hope his long fight and wonderful remission inspire others to "go for gold" and have some fun along the way.

    It will be dark in a couple of hours - probably our last evening on our little hobby farm together. Just 36 years and one month and twenty four days of marriage so far to the nicest, gentlest, kindest man on the planet.  Sorry girls, you think you've got the best but I have.

    Lorraine

    XXXXXX

  • Lorraine

    There appears only one thing for me to say - the home ranch has one hell a  gal caring for her hell of a guy. What a couple. Those three little words came from his heart to yours and back again. Keep on talking, hes hearing you.Lots of hugs and peace coming from me. The whole journey is inspirational.  Jules xx

  • tears are streaming down my face. that those are his last words is magical. I hope his suffering comes to an end soon and that he rests peacefully.

    thinking of you both

  • Lorraine - I hope you don't mind me posting.  I have been following your journey quietly and just wanted to say that I am also thinking of you both at this very challenging time.  Like others have said before me - you are a beautiful and inspirational woman.  May your last moments with Ian be peaceful.  Joanne X

  • Lorrainn how lovely that Ian was trying to say I LOVE YOU , I so pleased for you now lets hope you get that smile !!  Thinking of you at this horrid time, my heart goes out to you hearing the pain Ian is in must break your heart. I know it would me. Hang on in there we are all here supporting you the best we can. I hope Ian as been give something to stop the pain. Love & hugs I know you need then thinking of you Gioux xxx