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.

  • Hi Elkay,

    Like so many others I wish to send my condolaces to you at this sad time.

    Brian

  • 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

  • Lorraine,

    My sincere condolances on the loss of you lovely Ian. He is free from pain now.

    Thinking of you his amazing wife, sending you all my love, you have no regrets, you can take comfort in the knowledge that you could not have done a better job of looking after him

    May he rest in peace.

    Geri

    xxxx

  • hi lorraine

    i am so sorry to read of ians death.He was a brave man and you have both been an inspiratiion on here .I am glad for him that he is realsed from the pain and able to  say those last words. Love powered him through for so long,it is what everyone would wish to have in their lives.You must be so tired, i hope you look afteryourself in these days

    much love

    emma

  • Elkay,

    I am so sorry that Ian has had to leave you.  It will have given him such comfort to know that you were there fighting alongside him all the way - 24/7, year in year out, what else is love about in the end. Life is so cruel, but yourself and Ian shared many of the more beautiful moments it had to offer - I hope you can cherish them, and I hope Ian can cherish them too although he is now is a different place.  Please keep in touch when you are feeling strong enough, I hope your friends and family are with you.   Thinking about you, never forget you have been a wonderful and loving wife to Ian, he knows just how much you love him.  Katielouie x

  • All my heartfelt love goes out to you.

    Lyn

    XXX

  • Hi Lorraine,

    Although we have never spoken I have been quietly watching your sad yet utterly inspiring story unfold.

    I was so sorry to read that your last few hours with Ian was fraught with pain. I have undertanding of what that can be like as my Dad died from bowel cancer (with boney mets) in Nov 2011, and it was dreadful. I guess in the end it did help me cope with the loss, as I was just so relieved he was no-longer having to bear the pain.

    Anyway enough of me - I just wanted to send my sincere condolenses, much love and cyber (((Hugs)))

    You take care, and I look forward to hear more of your beautiful words (when you're ready!)

    Chezzy Xx

  • Dear Elkay

    So sorry to read Ian Died but at last he is out of pain and no longer suffering. Just want to let you know my thoughts are with you and hope you will feel able to post soon to let us know how your doing!

    Lots of virtual flowers and hugs x

    Ann x

  • Hi everyone

    I logged on to do a quick hello and say I was doing OK and me being me couldn't help myself and posted to Newzealander1 because his situation resonated strongly with me.

    Always did have verbal diaorrhea, me!!

    As I say I am OK.  I don't seem to have a minute to myself to post properly but I wondered if you thought I was OK.  It is very surreal to be alone.  We were married 36yrs and 52 days.  For the last 21 years 3 months we had been almost inseperable, running our business together and working on our farmlet in our free time - oh and of course eating at lovely cafes and taking wonderful holidays together.  I was almost never alone - so why do I feel Ian will drive in the driveway in a few minutes and I'll start getting the tea on??  I am sleeping unbelievably well - not even scared - yet I was sure I would be.  My furbabies are not a comfort - still too warm to sleep with Mum and comfort her - the tables will be turned when the weather gets cooler I am sure and then I shall spurn them!!!

    A friend who had disappeared when the going got tough for Ian and me has reappeared via text message.  I meant to type and save as a draft a very angry, honest reply - and hit SEND in error (or was it Ian's finger!!).  She replied this morning that she appreciated my honesty, doesn't know if she can be the giver I need right now - but she will try.  She and her husband split up a month ago.  Even I know to lose a husband "in life" rather by "by death" is horribly tough.  So we will have homemade chinese tonight and toast Ian with a glass of Asti Riccadonna and try to find a new level of friendship.

    My friend Sue, who did all the nursing for Ian in his last three days/four nights, keeps saying to me "Build a bridge and get over it."  I am a little tired of the saying - but today I did build one - and it didn't hurt a bit!!

    Lorraine