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
  • Today started awkwardly.  What to feed my man when the morphine will bung him up given half a chance, but the radiation to the abdomen will almost certainly result in diaorrhea.  To do High Fibre or not to do High Fibre, that is the question?

    We set off for the 30ml drive in plenty of time.  I felt so worried and overwhelmed by yet another fork in the cancer road and the implications if radiation doesn't work that I drove all the way feeling physically sick.  When Ian's cellphone went off at 9.45am to remind him to take the anti-nausea meds, I could have happily reached out for my share too

    I had (belatedly) read the radiation brochure from cover to cover last night.  It mentioned that the carer can go to the treatment room on one occasion up until radiation is turned on.  I told Ian that I really needed to do that - to see the room and the machine.  It's how I operate - I don't operate well on ignorance and fear.  He agreed that would be a good idea.

    But of course when the nurse came to get him and I said can I come too to see the room, she refused point blank and said there were extra tests to be done today and it was inappropriate for me to have access.  She said I could see another day. 

    Turns out the tests were asking some of the same questions again as Monday (including where is the cancer situated!!!!) and a final confirmation that Ian was happy to have the treatment today - I guess the implication there is that I was somehow forcing him and he needed to be asked away from the dragon of a wife.

    It's not like I'm a tourist - and I'm not doing a school project.  I just wanted some sense of what my husband was having done to him today.  I sat with him through the emergency blood transfusion 7 years ago, then waited with him in the pre-op room, acted as his "unofficial nurse *** handmaiden" for his five days in hospital, held him on the toilet while he got rid of foul black ****, coaxed him to eat and sleep, put up with his oncologist's diss-ing of me whenever I had the temerity to ask questions, sat in the waiting room for every CT scan for 7 years, sat beside Ian for every one of the 18 chemotherapy treatments over the years and the fourteen mouse antibody treatments.  I have done the hard yards.  I have fetched, carried, cleaned up messes, cooked, done Ian's chores - and continue to do so.

    Did Ian stick up for me today?? Did he stick up for me when the oncologist used to belittle me for asking questions - and on one occasion asked our patient advocate in front of us "Can you do something with her?"

    The answer no!!  Our social worker says I am Ian's strongest, most fierce advocate.  Unfortunately Ian is not mine - and I am bitterly disappointed and deeply hurt.  If he had said "Are you sure Lorraine can't just get a look in the door" and they had still said No, I would have felt that at least Ian was fighting my corner but no..............................

    It sounds such a trivial thing when I read what I've typed - I know I am being pathetic and self-pitying.  But "they" don't mind when I do all the cleaning up of the messes they create and I soothe him when he's frightened and distressed - but let me see inside the door of a room - HEAVEN FORBID.

    On the way home I told him I was angry and hurt and that tomorrow I will wait in the car - like the biddable little lady I am supposed to be.  I was still smouldering an hour after we got home so I grabbed an icecream out of the freezer and some bread and drove to the local park to feed the ducks and take some extremely rare ME time.  Wouldn't you know it Ian was asleep when I left and still asleep when I returned an hour later.  So he doesn't even know I was THAT angry or needed time away from him.

    But as I am sure many of you will be thinking reading this - It Isn't About You Lorraine!!

    I hope when I post next I have found my sense of humor again.


  • Hi Lorraine

    I just read your story and yes you are entitled to some "ME" time and I am glad you took some time out for yourself and I bet you felt guilty about it and of course you are entitled to ask whatever questions you want after all he is your husband and the love of your life and and for his oncologist to try and belittle you was very unprofessional.

    I can fully understand you wanting to view the treatment room after all it is your husband who is having this treatment who wouldn't need to see what they have to face and you are the person who as you say has to take away his fears and tell him everything is going to be OK not the doctors and nurses.

    I am sure you are now fed up with people asking how Ian is do people ever ask how Lorraine is coping?  I know people on this site do so Lorraine it is about you too.

    You are only human like the rest of us Lorraine and you have feelings.  I don't think you were angry with Ian it is this awful disease and what it is doing to him.

    Don't forget everyone is entitled to off days.

    Take care and take more time out for yourself.  You have had your fair share of it over the years.

    Mickied

Reply
  • Hi Lorraine

    I just read your story and yes you are entitled to some "ME" time and I am glad you took some time out for yourself and I bet you felt guilty about it and of course you are entitled to ask whatever questions you want after all he is your husband and the love of your life and and for his oncologist to try and belittle you was very unprofessional.

    I can fully understand you wanting to view the treatment room after all it is your husband who is having this treatment who wouldn't need to see what they have to face and you are the person who as you say has to take away his fears and tell him everything is going to be OK not the doctors and nurses.

    I am sure you are now fed up with people asking how Ian is do people ever ask how Lorraine is coping?  I know people on this site do so Lorraine it is about you too.

    You are only human like the rest of us Lorraine and you have feelings.  I don't think you were angry with Ian it is this awful disease and what it is doing to him.

    Don't forget everyone is entitled to off days.

    Take care and take more time out for yourself.  You have had your fair share of it over the years.

    Mickied

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