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
  • A quick hello to all my mates - very briefly, thanks for your posts.  Ian is shattered and has headed for bed and I'll join him in a moment.  We have talked and talked and he is so sad and sorry that he let me down.  But wouldn't you know it, as soon as we were "OK" again, it was sort of "OK, now it's all about me again, I have actually been constipated since Friday and I need you to sort this for me."  I flipped again (briefly) because that was slotting me back into the role the hospital would have me play - relief nurse and general dogsbody.  I made him ring the hospice for advice and once again did my research (for constipation prevention this time) and threw out all the stupid pamphlets radiation had given us for diaorrhea.  Actually thinking about it, they probably hadn't even read their own questionnaire stating Ian's on morphine 24hrs a day and therefore 50% likely to be plagued by constipation.  Surprise, surprise!!

    So we are both OK again - with ourselves and with each other - but I will not allow myself to be in a position like that again and when Ian has finished his radiation I will be making a formal complaint to the hospital.  I read the Patients' Rights form today.  Right 8 says so long as everyone would be safe, it is appropriate for a supporter or caregiver to be with the patient.  I note, with irony, that the form is about Patients' Rights.   WHO CARES ABOUT THE CARERS HAHAHA!

    A cool, dismal, rainy day today - spring, what spring?  So no little side jaunt and Me Time sitting on a picnic table at the local duck pond.  A good thing too, I suspect, because people will be starting to talk about the Mad Woman in the Yellow BMW who comes to weep and feed the ducks every day

    Night night from NZ y'all!!!


Reply
  • A quick hello to all my mates - very briefly, thanks for your posts.  Ian is shattered and has headed for bed and I'll join him in a moment.  We have talked and talked and he is so sad and sorry that he let me down.  But wouldn't you know it, as soon as we were "OK" again, it was sort of "OK, now it's all about me again, I have actually been constipated since Friday and I need you to sort this for me."  I flipped again (briefly) because that was slotting me back into the role the hospital would have me play - relief nurse and general dogsbody.  I made him ring the hospice for advice and once again did my research (for constipation prevention this time) and threw out all the stupid pamphlets radiation had given us for diaorrhea.  Actually thinking about it, they probably hadn't even read their own questionnaire stating Ian's on morphine 24hrs a day and therefore 50% likely to be plagued by constipation.  Surprise, surprise!!

    So we are both OK again - with ourselves and with each other - but I will not allow myself to be in a position like that again and when Ian has finished his radiation I will be making a formal complaint to the hospital.  I read the Patients' Rights form today.  Right 8 says so long as everyone would be safe, it is appropriate for a supporter or caregiver to be with the patient.  I note, with irony, that the form is about Patients' Rights.   WHO CARES ABOUT THE CARERS HAHAHA!

    A cool, dismal, rainy day today - spring, what spring?  So no little side jaunt and Me Time sitting on a picnic table at the local duck pond.  A good thing too, I suspect, because people will be starting to talk about the Mad Woman in the Yellow BMW who comes to weep and feed the ducks every day

    Night night from NZ y'all!!!


Children
  • Just looked in at this thread. So sorry you having such a difficult time with everything. Life is such a *** sometimes and I do hope they start listening to your need as well as Ian's. ITs hard enough coping without this added anguish. We too have a local duck pond (but its my legs that take me there as I dont drive!). If ducks could talk .............!! In our moments of ranting followed by our efforts to be calm and cope throwing the bread seems so normal. Take care everyone.Jules54