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 Lorraine,

    My breakfast is bittersweet as I read your thread this morning.  Sue's timing was truly amazing  and both her e-mail and now your response  leave me lost for proper words to describe how they affected me as a reader and a wife to someone who one day will face the same bumpy journey (of course with the hope that pain relief alone can give us some good times ahead). Sadly it appears that time is shortening for you both and I am so pleased you have wonderful memories to take you through and also Lorraine your incredible resolve (and Ians) to have made the best of your good days/years. I wish my hubby had this type of character but  they cant all be the same. Selfishly I draw strength from how you are coping but it has so much been a joint effort.  I am pleased you are getting 'truthful' support (though suspect you could tell them a thing or two and probably more ).  Nothing I say seems really worth saying but your story has moved me considerably and your way with words through this most difficult passage of time just shows how true love carries you through.  Hope the fluffy bundles are giving you lots of cuddles and am sending you more virtual hugs and hope that occasionaly through the tears you get to see Ian smile  again. Jules 

  • You are in my thoughts constantly.

    Love to you both

    Lyn

    X

  • Dear Lorraine

    I have followed your posts with a heavy heart, not feeling able to comment - what can one say to make it better it's impossible. I hope so much that Ian drift's away as Sue's husband did and leaves you with a smile. You truly deserve it for the way you have lived so selflessly, he couldn't have managed without you.

    I send you warm and tender hugs.

    Sue x

  • Lorraine

    What can I say as you come to the end of the long road as I sit here in tears.

    You still have precious time left with your sweetheart, I know it's hard but savour every minute, it will be engrained in your brain forever.

    My thoughts are with you and your lovely Ian

    Geri

    xxx

  • Thinking of you Lorraine, I know how hard it is & I also know how hard it,s going to be, treasure every moment you have left together. What I wouldn,t  give to be able to give my darling John a hug once more. I read your post & it make,s me cry as I know what you are going through, I,m remebering the end of John,s life the  two big smile,s he gave me & how lucky I am to have such a lovely end. I do hope you get one as well. Sending lots of love to you at this horrid time take care love Gioux xx

  • Hiya,


    Our boys go through so much trying not to leave us, it breaks our hearts to even consider letting them go.  I got to thinking in those last few weeks, for them life is a bit like being at a party, when you are just so tired and maybe in pain that all you really want to do is just go home crawl into bed and go to sleep for a while - but you don't want to be a party pooper and leave your best girl by herself.  For me the only strategy to even begin to cope was to think "ok, you go and have a rest I'll catch up with you later".

  • Dear Lorraine,

    Keep on hugging him.

    Love,

    Expat xx

  • Sueps,

    How lovely you put that at a party !! it really made me think.

    Gioux

  • When we found out a few months ago that Ray was down to months not years ,  I suggested we just climb into bed together and take every single sleeping pill etc in the house and hopefully not wake up. He looked at me quite quizzically and said "What little delights are you going to cook for my supper?".  I realised then that my man was one tough cookie and we were going to live every moment of his life and not try and bail out.  We managed to squeeze in two holidays of a lifetime, lots of laughs, lots of cuddles and squeezed out every ounce of life possible - despite the difficult times. If we had done it my way we would have missed all those good moments. As usual he was right.


    Now, I take my strength from the his example - he liked to "lead from the front" and now I feel I absolutely must try and hang on in. No bailing out before my time - tempting though that can be in the very low moments. He showed me how to live and I must even if he can't. I know he is still there coaxing me on. I will not let him down.


  • Thank you all for your messages to me so far.  Its 8am NZ time and we are still trundling along on this sad journey of ours.  I cant respond each time but I do!!!!! have a weep (and sometimes a good sob) and gain some more courage and strength from the lovely support you are all giving me.

    I thought the end had come early last evening. Ians breathing slowed to just eight.breaths a minute altho his hands and feet were still lovely and warm. Thank goodness a registered nurse friend was off duty and at home.  She rushed straight up the road to our home and hugged me and with a wry grin told me off for being a drama queen.  Ian woke for her and smiled.  Clearly he was so used to The Mrs prattling on he didnt feel the need to respond to me hahaha

    So after I rewarded our friend with a large G&T and sausage rolls (an odd combo I know!!!) I dragged my bed over beside Ians and we went to sleep together holding hands.

    We woke at 5.  Our friend had suggested we sleep with the curtains open for the wonderful view from our beds in the lounge. I got up and made us tea and toast and opened the curtains and she`s right ~ its a wonderful view to have for these last days together.

    I am typing this on my cell phone. Our right arms are linked and Ian has his left hand clasping his right.  I am really awkward and dont have my glasses on so please excuse typing errors.

    I too loved the "party" analogy Sue.  So did each of the friends I told it to yesterday. Theres been lots of tears and wry smiles in this house lately.

    So we live to fight another day.  Ian is away with the fairies a lot.  Hes been talking about "bunny rabbits running thru the lounge" since last night.  Instead of fish sandwiches for the cats he'll be having me make bunny sandwiches next!!!!

    I'll post again soon.

    THANK YOU EACH AND EVERY ONE OF YOU - YOU HAVE WARM HEARTS!!!