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.

  • Good on you Lorraine. And I'm so glad Ian is standing with you too and standing up for himself, it makes it so much easier to bear when you're in it together. Although I must say our experience so far at the hospice has been nothing but positive (in the circumstances...) there is a definite tendency on the part of some staff to assume that "one-size fits all" and that what they saw working for one "guest" works for all, and it takes a strong soul to override those opinions sometimes, but you need to if you know it's not what your loved one wants/would have wanted.  I am so happy to hear that Ian's been feeling better the last few days - long may that last, and long may it last that the new oncologist is involved and understanding your true needs. Have a wonderful festive season (says she desperately avoiding any refernce to deities or imaginary figures ) and I really hope you can enjoy your trip away - I can't think of two people who deserve that more.

    Hugs

    Vikki

  • Hi Lorraine

    No I hate Christmas too so but I will say I hope you and Ian have a lovely holiday - you both deserve it.

    By the way congratulations on your buy and gift nomination.

    Take care

    Mickied

  • Hi Elkay

    I hope you and Ian have a smashing holiday.

    Take care and good luck to everyone out there

    love Pam x x

  • Hi Lorraine,

    Pleased to hear that you are both still fighting the battle successfully.  I hope you have a fabulous break and enjoy some great food and the fireworks.  I love fireworks too!

    I can understand your anger over doctors and nurses, medications - is it enough is it too much, or not enough how are you supposed to know?   I know you learn and find out a lot during this whole process but at the end of the day we are not the doctors and nurses.  You are doing completely right complaining to all and sundry.  One of the overwhelming emotions I still feel is guilt that maybe I didn't complain enough on behalf of my poor husband so keep up your good work on Ian's behalf!  It might have bought my husband a little more time....

    The hospice where my husband was sounds a lot better than your local one as all the rooms there have two beds and you are encouraged to stay for as little or as long as you like.  I spent pretty much all the time there and just left for an hour a day to have a shower and change of clothes.  Family could come and go from early morning until late at night too.

    All of your mini novels are great, you usually manage to get something in somewhere that makes me smile!

    Take good care of yourselves, have a great time and we all look forward to hearing your news in the New Year.

    Love

    Poppypetal

  • Hi Elkay

    Wonderful to read your novella update and to hear that Ian is feeling better and you have a oncologist who is listening toyou both - what a difference that can  make!  Wishing you a wonderful holiday together.Jules54

  • 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?

  • Hi Elkay

    Wishing you and your husband a peaceful New Year and so pleased to read that you watched the fireworks together. Long may your journey continue. Best wishes Jules

  • Hi Lorraine and Ian,

    A happy new year to you two too, despite whatever Ian's little beast tries to come up with. Yes you've made it into 2013.

    My stepson posted the message (something like) "Happy Arbitrary Date Recording an Inexact Estimate of a Single Orbit of our Planet Around it's Parent Star!" on his facebook page. Yep, have to agree with that. I have checked it out for hidden acronyms but it doesn't seem to me to say anything either offensive or even decipherable. Perhaps you can see better?

    We've had a loverrly Christmas with my son and his husband. We decided that the dinner didn't have to appear like a restaurant dinner, (one course immediately followed by another). So we had; coffee and chocolate at 12.30 with present opening time; a starter of giant king prawns in garlic butter and parsley sauce at around 2.00pm; a main course of Duck Breasts in red wine sauce with most of the trimmings around 3.30pm; dessert of Chocolate Yule Log with chestnut puree and cream stuffing and ganache coating at around 4.30pm, Cheese and Crackers at around 5.30 pm  and we all went to sleep by 6.30 pm. Actually we all woke up for various "second rounds" of christmas day at different times much later on but the official family christmas had ended by then, and very well too.

    We are well aware that this could be one of five, or maybe six, "last christmasses" for Janet and her Grandchildren. Each one could be the last. We aren't meaning  to let anything about that spoil it for either her, her, children, or her grandchildren.

    I hope that 2013 offers Ian at least several, and preferrably 12, months of wellbeing and relatively good health.

    Love from Janet and I,

    Russ

  • 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

  • Russ, you clown!!  Glad you picked up my posting.  Can you believe it - you can teach an old dog (or dog-ess as the case may be) new tricks.  I bought an Android phone in a Boxing Day sale and am flying it by the seat of my pants.  Home again now, though, with a good ol' reliable PC.  Yes, we have done and dusted the fireworks for the Happy Abitrary Date...." thingy.  No I didn't notice anything hidden - but my brain tends on the mushy side these days anyway hahaha.

    And that menu - my salivory glands cranked up and I fairly slobbered over that delicious collection of yummy food.  Little wonder you all fell asleep by 6.30pm.  Was that the remedy you devised for "awkward" rellies - feed them to sleep!!!

    There's something extra-special about Christmases and New Years when you know without a shadow of a doubt that they are numbered - no more, yeah, yeah, yeah, whatever........  And no that's not to spoil them - just to value them "beyond rubies" because WE KNOW HOW PRECIOUS THESE DAYS ARE.

    So here we are, four days into 2013.  Today looks like it's going to be a good day - Ian has got up and showered by 10.30am and his huge radiation burn on his back is feeling a little bit better than yesterday.  He has the CT scan we threw a wobbly to get next Friday and we will know then how things stand and if the radiation and subsequent side-effects were worth it.

    That 36th wedding anniversary celebration is just on the horizon - will it be held on dry land or at sea - I wonder???  All will be known when we get the CT report on the 14th.  Watch this space

    Hope your post-Christmas Day dieting is going well hahahahaha.  Say hi to Janet for us?

    Lorraine