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.

  • A quick (can I do quick hahaha???) note to say everything's happening at once.  I went to Part 1 (of 3) of a Carers' Toolbox Course yesterday (while Ian drooled in a DIY store).  I got so much out of that two hour session, the mind boggles!!!  But Insommnia came a-calling for us both last night (not helped by rampaging kittens who'd been shut in while we were away most of the day) and I was up making toast and checked our emails while waiting.  Last night at 9.42pm the oncologist had emailed - Erbitux can start on Monday 27th August and!!!! the drug company will provide every third treatment for free!!!!!!!!!!!!!!!!  Who said drug companies were ******.  As usual the oncologist was short on words (unlike me) but we take it there will still be a private hospital fee and the doctors fee but hey!! $2875 worth of drug for free every third week will be awesome and take away some of the guilt that I know Ian has about burdening us with more debt.  Now we are off out for lunch with elderly friends who've had to cancel a trip to the States because Jim has congestive heart failure - we're going to try to cheer them up.  Cancer isn't the only disease that bites people on the rear ends eh???

    Lorraine

  • That's great news Lorraine, I'm so pleased for you and Ian.  It's cheered me up no end.  Hubby has looked up Erbitux on the internet and is keeping it in mind for later, he says thanks for the heads up for future use.

    Lyn

    XXX

  • You are welcome Hubby!! Glad to be of service hahaha.  And the best thing is it may well be funded by your health service - seems lil 'ol Nuzillin is bankrupt and leaves it to us citizens to fund such treatment.  But my Thought for the Week is: It's only Money and I have Only One Ian - and I don't mind parting with one to keep the other for a while longer

    Off to bed for us - hopefully to not need a midnight feast tonight - we left the kittens to play outside while we went out for lunch with friends and spent the afternoon putting the world to rights with them - so at least the kittens are tired out tonight.  It was the Olympics all over again last night till very late - pole-vaulting being a specialty event

    Nite nite!!

  • Hi elkay.

    How I remember the mid night 'feasts' of tea and toast Rod and I had and that was long before his illness, similar things the world over.

    I expect you will both be preparing for  27th, I will be thinking of you as always but will 'speak' to you before then.

    Kind thoughts and best wishes. Rodis.

  • Ian's first Erbitux and baseline CT scan are now done and dusted with no apparent side effects so far.  He will be having two months of weekly IV treatments with another scan to measure the success or failure of the drug.  Cross fingers the drug can "put the brakes" on the cancer as the oncologist described its function - not a cure - just slowing down the inevitable.

    This will be my last post on this website.

    Last night some fool with ideas of alternative therapies posted.  It made me mad that someone could be so insensitive to plug such nonsense to those of us on the site living the nightmare of terminal cancer.  I told him/her/it so.  My post was removed by the website.  So it turns out the fool with the nonsense gets to say what they want but someone who takes offence at their nonsense can't.  I guess this post won't make it to the site either!!!!

    Thanks to my friends on this site who have supported Ian and me.  Good luck to you all.

  • Hi elkay,

    This must have been a terrible mistake and we are sorry if one of your posts were removed I cannot quite understand what happened as I thought your response to that spammer was brilliant. It has happened before that when removing a post by a spammer the replies are removed as well which is a bit of a technical glitch with our system. We did remove several nonsense posts by this guy yesterday and it is possible that your post accidentally got caught with the deleted ones. I am really sorry about this - the fault is completely on our end. We left the original thread he started because we thought that the community dealt with him particularly well and he needed to be exposed for what he was. I wanted to reassure you that he is now banned from our website and this is thanks to you and others here who alerted us and dealt with the situation extremely well.

    So please forgive us for the accidental deletion and keep on posting. We love reading you here and follow Ian's story - you are very much loved in the Cancer Chat community both by the other users and by us moderators.

    Again very sorry about this

    Lucie, Cancer Chat Moderator

  • Hi elkay,

    Please do stay.  The same happened to me - my post to iron man was deleted and I'm 100% certain I wasn't nasty or broke any rules?  I did however report him - so am guessing I may have been accidentally deleted in the process aswell.  Dalton x

  • Hi Dalton,

    Yes you are right that is what happened - I have just been looking into it. It is a silly bug in our system which we need to address. When deleting a particularly nasty post by the Ironman as you call him (I think that's the best nickname for him!), all replies got removed as well. Argh!!! It's a shame as your replies were brilliant I remember them well and I am really sorry this happened. I wish I could bring them back but we will be particularly vigilant that it doesn't happen again in the future. So please accept my apologies Dalton, elkay and anyone else whose replies were accidentally removed. I really wanted to stress how well you dealt with him and how great you were at reporting him - this ensured that he got banned quickly from our forum.

    Lucie

  • Hi elkay,

    I hope you have picked up these posts and will reconsider your decision. You are a much needed and respected member of this forum, while documenting Ian's journey you also give sound advise to other members.

    Pleased to know things are going well for you both just now, long may it continue. I know it is late night with you so hope you have read these posts and are able to have a good nights sleep. Best wishes.Rodis.

  • Hi Elkay,

    I have never posted to you before, but I too like Rodis and I feel sure a lot of others feel exactly the same, and I really hope you will continue to be a big part of this site. I like a lot of others have read your postings both about you and your husband and also to other people and you play such a big part in making this site what it is. What you wrote to that individual was spot on and I agreed with every word you wrote.

    Best wishes to you and your husband, Brian