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
  • HAPPY NEW YEAR EVERYONE!!!!!!

    As Ian said just a few minutes ago, he made it to 2013!!!!  Neither of us had any confidence on 1 January 2012 that that would be likely.  I stood on our hotel balcony last night watching the lovely fireworks, alone and a bit weepy , but then Ian woke up and joined me and we held hands to watch.

    I hope this coming year treats us all well.....  We can only hope for the best can't we?

  • Happy New Year to you and Ian also Elkay.  So good to get your update,  been wondering how things were going for you and Ian.  Sadly so many people will be able to feel empathy with the bungee jumps of treatment and your 'novel'  but helped by feeling  less alone by reading your words.

    Caught another post where Ian was tired.  Hopefully this will improve  -  my daughter had  symptoms like a sleeping sickness about a month after radiotherapy, it was explained to us as   -    the body doing overtime dealing with, and getting rid of, all those killed off cancer cells. So fingers crossed  for the scan, hopefully the treatment will have relieved some of the uncomfortableness Ian was feeling before radio treatment.

    Take care and make the best ( sure you will) of those quality moments, gardenlady.

    Great to think of the World linked by fireworks for 24 hours

  • Thanks for your lovely post gardenlady.  Interesting to hear of your daughter's side-effects so long after radiotherapy.  We weren't given much information and when Ian was having the retching, Radiation Oncology positively ducked for cover and said he must have food poisoning.  It's a shame that people who dispense treatments can't acknowledge the harsh effects they can have   The huge belly hasn't subsided much so until the CT there's no knowing what's happening "inside."  The hospice oncologist said there would be lots of damage internally and I haven't researched it on the Net but I suppose the body protects damage like that with swelling and maybe fluid.  I just know this huge belly is affecting Ian's mobility and flexibility and his pride.  It's a hard thing for a fit/active man to have to ask his wife to put his socks and shoes on   That's the kind of thing that hits Ian harder than the serious side-effects.

    So it's a lovely sunny day today, but with a refreshing cool breeze too.  Ian recorded an Ozzy 20:20 cricket match overnight so it's time for a "real coffee" and a spot of cricket before I dish up Day 3 of roast lamb and new potatoes - Chef Newbie I am not!!!!

    Thanks again, gardenlady

Reply
  • Thanks for your lovely post gardenlady.  Interesting to hear of your daughter's side-effects so long after radiotherapy.  We weren't given much information and when Ian was having the retching, Radiation Oncology positively ducked for cover and said he must have food poisoning.  It's a shame that people who dispense treatments can't acknowledge the harsh effects they can have   The huge belly hasn't subsided much so until the CT there's no knowing what's happening "inside."  The hospice oncologist said there would be lots of damage internally and I haven't researched it on the Net but I suppose the body protects damage like that with swelling and maybe fluid.  I just know this huge belly is affecting Ian's mobility and flexibility and his pride.  It's a hard thing for a fit/active man to have to ask his wife to put his socks and shoes on   That's the kind of thing that hits Ian harder than the serious side-effects.

    So it's a lovely sunny day today, but with a refreshing cool breeze too.  Ian recorded an Ozzy 20:20 cricket match overnight so it's time for a "real coffee" and a spot of cricket before I dish up Day 3 of roast lamb and new potatoes - Chef Newbie I am not!!!!

    Thanks again, gardenlady

Children
No Data