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.

  • Mad, quite right too..    You've been such an inspiration.

    Just wanted to say been following your thread  and   hoping the new drug does its work and gives you both some more special time.

    take care, gardenlady.

  • Hello Elkay,

    As soon as I saw your post this morning (UK time) I knew that some mistake must have been made to remove your response to that horrible Troll.  I also knew that you are so well liked and respected on this site that the regulars would be out in force to ask you not to leave this forum.   Your wise words are too valuable to us for you to leave us..and of course we do need to know how you and Ian are doing because we really care.

    Please don't leave us.

    Maggie x

  • Hi Elkay,

    I have never posted to you before,I really hope you will reconsider leaving the site

    It sounds like a genuine mistake made by a computer issue ,

    I for one always follow your posts to se how you and Ian are getting on, I think ye are amazing

    Hopefully you find it therapeutic also to post on here..

    dont let this guy acheive anything by what he did

    Geri

  • A very quick hello (because our homemade pita breads with onion chutney and poached chicken breast are waiting  ).  Thank you so much Lucie for checking out what happened to my post and contacting me to explain.  Thank you, too, to expat99 for your email, and to Dalton, Rodis, Brian, gardenlady, Maggie and Geri for your posts.  You are all very kind and generous - I don't know that I'm particularly wise - just had a lot of life experience during this 6yr 10mth cancer journey of Ian's.  Now I know why my post disappeared I certainly would love to stay - the cancerchat community doesn't just talk the talk does it - we all walk the walk eh?????  Thanks again - you're stuck with my burblings and stories of DIY husband and fur babies for a bit longer

    Lorraine

  • Hi elkay,

    I am so pleased you are going to continue to play a big part on this site that you do. It Just wouldnt be the same without you. Thank you for all you do for the people on this site and I hope things go well for you and Ian.

    Best wishes to you and your husband, regards Brian.

  • Hi elkay,

    Phew!! I am so reassured that you are staying with us and agree with woodworm that Cancer Chat would not be the same without you. I was absolutely terrified that you would leave us because of that troll - I can understand though why you were upset; this deletion system can be buggy and we really need to look into it. We'll be shaking with fear when we press the deletion button next time in case we run the risk of losing you again!  Seriously, thank you for forgiving us for this terrible mistake and for continuing to share your fur babies stories. Actually, while I am there, could we also have stories of homemade pitta breads with onion chutney and poached chicken breasts? That sounds absolutely delicious - you actually make the pitta breads yourself? Wow I am impressed - I am craving one of those right now. What's the recipe?

    Lucie

  • Just on my way to bed - too much sun and vege gardening for this kid - and falling asleep in front of TV twice is a sure sign I need my bed.  I'll post my very simple recipe for you tomorrow Lucie - though you do need a breadmaker to keep it real simple.  Talk to you tomorrow!!

    Lorraine

  • Dear Lorraine,

    I haven't been on for a while so I was aghast to read that you had been offended and felt upset enough to write a final farewell! Having read on further through the posts I see it has been dealt with and you will still be writing your thoughts and supportive comments which were so welcome to me when I joined. I hope you enjoy more days with Ian and I echo what all your other friends on here say. Thank you. xxx

  • Hi elkay,

    Good to see you will be remaining with the forum. I hope you had a restful night after all your exertions - physical and mental.

    You see how much you would be missed. Take care and hope Wednesday's treatment goes ok for Ian.Rodis.

  • Thank you Elkay but take your time it's not urgent- I do look forward to trying my own homemade pittas! I have a breadmaker and make my own bread sometimes, well not as often as I'd want but when I make bread, I love that smell that comes out of the machine.

    Lucie