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 expat,

    Spain was wonderful. I have to say that I slept 12 hours each night (usually I sleep 6 or less hours) ; so didn't get as much exploration, activity and excitement (let alone exercise) as I usually look for in a holiday, Obviously I needed it (the sleep) and it was the most dream-filled sleep I've had in years. I do believe that dreaming is therapeutic so I assume that the length of my sleep was associated with the amount of dreaming I had to do.

    Hope things are as ok as they can be for you and your partner. Wishing you both well,

    Russ

  • Kia Ora Bro - as we say in Nuuuzzillin!!! 

    I'm so pleased you enjoyed Andalucia and it's wildlife - though not perhaps it's night life if the 4am shower is anything to go by hahaha

    A Golden Eagle I can understand (we were delighted to see Bald Eagles on our Alaskan cruise) but Hoopoes????  Thank goodness for Google - and what spectacular birds Hoopoes are.  We haven't got anything in NZ to rival that - wow!!

    All jokes aside, that wee small hours leakage (to say the least) must have been upsetting for you both.  The reversal will be a huge blessing won't it if it is a "goer."

    So back to home and routine for you - but hopefully the good sleeps and dreams came home in the suitcase with you.  I've got a homeopathic remedy now for my insommnia and I sleep deeply and refreshingly night after night.  The drops rarely work on Erbitux night but Ian is wide awake on steroids that night and I'm wide awake on hope and realism so we rarely get to sleep before 3am   But because our business partners have sacked me from my bookkeeping role in the business, I don't have anything to get up for so that's, as they say, a  p..o..s..i..t..i..v..e   - because people do like us to be positive don't they??????????

    So, I see I've neglected my posting for a month or more...........

    An update for you Russ and anyone else watching..

    * Toxic business partners still keen to possess the other half of our business - but won't put a price on their offer

    * Toxic business partners figured firing me would put the pressure on - lack of wages to pay for groceries always does focus people, I agree!

    * Local people still diving into doorways, speaking to me rather than Ian like he's deaf and dumb etc etc ....

    * Closest friends pretty much over Ian's protracted cancer journey and getting in touch only occasionally (in two cases not at all since the hospice word was       mentioned) so our social life consists of visits from the hospice nurse and the cancer society support worker and our trips to Palmerston North for treatments.

      * Adult cat and three kittens still making us laugh (and tear our hair out when they need rescuing from the curtain rail )

    *  Lots of talks between us about "my future."  I can't escape my own personality and I do not forgive easily.  Acquaintances who have turned away from me, friends who have shut us out, my parents who wrote kicking me out of the family four years ago because I wasn't paying them enough attention....  I can't stay in this town and smile sweetly at all those people once I am alone and sanitised of Ian's cancer and able to be spoken to again.  We thought we had to stay here in the months ahead - because after all we love our little farm and the peace and tranquility it offers us.  We drive the 380 metres up our little side road and our little farm opens its arms and wraps them around us and soothes us.  But with Ian more well than he has been in months (and just hoping against hope that Erbitux is working) we have come to the conclusion that we can "move on together" with Ian helping me find a new home and perhaps get to share it for a while.

    *  .....So.... call us barking mad but our little farm is on the market and we have reserved a 702m2 site with "amazing" views on a subdivision in Palmerston North, 30 miles away.  We went to one open home over there (Ian refused point blank to go to the other six I had listed with military precision) and we looked at a couple of big blocks of land that were on the city fringes, but while nice when we are together still, would be pretty remote for a widow who's never lived alone in her life.  We will have a building company do the whole building process right down to lawn, fence and driveway - even letterbox - and we refuse to be stressed - we are just excited to have something exciting and wonderful to think about.

    *  We have had two viewings of our home without a result but we are calm and optimistic.  The first couple loved our little farm but said honestly they just couldn't afford it.  The agent has told buyers our situation and I am glad that they had enough respect for Ian that they didn't see an opportunity to force a cheap bargain.

    *  By the time the house sells and we have to move out, I will have had the chance to clean from top to bottom AND get rid of all the junk we have accumulated.  Everything else will go into storage until we can move into the new house.

    *  And where do we live meantime?????????  You're going to be truly convinced we are barking mad and Expat is going to laugh and laugh (and boy does she need a laugh right now) but we are going to live in a friend's 7m caravan!!!  Ian is going to buy a big netting chook run for the cats and friends with a farmlet ten miles away have said we can "park" at their place.  Thank goodness summer is approaching!!!!!!!!!!!!!!  And no, I won't be washing in a stream - there is a laundrette nearby

    *  We have at last started to fight back with the business partners with a few choice words passed on via the solicitor they have decided they need to hire to boot us out of our business.  And our real estate agent is taking her boss to our workshop building tomorrow to strut around with clipboards valuing the building and the plant we own - partly because we need those valuations - and partly to scare the ****** out of them.  That was Ian's idea - he is so over their grasping, greedy, callous behaviour!

    *  Ian has Erbitux No. 7 on Tuesday 9th - he still feels reasonably well, just a bit sad sometimes, and gets a bit done on the bathroom reno now and then - none today because it is the famous Bathhurst motor race in Australia and he is glued to the TV - and can replay any bits he dozes through

    *  We are meeting our builder on Tuesday morning to discuss house plans and the building site.  After Erbitux we will stay Tuesday night, then fly for free (using airpoints accumulated by paying for Avastin and Erbitux with our credit card to gain points) to Christchurch in the South Island.  A shuttle collects us for a 90 min drive to Akaroa, a French-themed village founded by French colonists in the 1800's (until you Brits booted them out!!!).  On Monday I will turn 57 with my man at my side - in an apartment above a patisserie!!!  LIFE IS GOOD!  We fly back to Palmerston North on Tuesday morning in time for Erbitux that afternoon, then stay the night because the CT scan is at 9.30am and Ian will be nil by mouth for four hours before.  So it's up with the larks for me to get him some brekky - perhaps some croissant brought home in our suitcases!!!  Then by midday we'll be able to zoom home to cat and kittens and sheep and cattle (and hopefully an offer on our house).

    *  I think that's got it all covered - I'm feeling a bit tired just looking at it all - hahaha - no, actually we are both excited.  In fact Ian says if the Erbitux isn't doing it's job and he is dying, he still wants to "move on" to help me start this new life in a busy little city with movie theatres, buses, airport, hospice, hospital, job opportunities for me - all the stuff we haven't got here.  And we'll be anonymous - we can walk the streets without people hurting themselves jumping behind shrubs hahaha.

    Will be back "on line" after the 17th - keep happy and well meantime.  I'll talk to you before the November "stoma discussions" in any case.

    Bye for now 

    Lorraine


  • Hi Russ,

    I'm glad to hear you had a good break in spite of the alarums in the middle of the night.  I know exactly what you mean...  And i was interested to read about the birds too.  The walk from my office to the oncology infusion centre takes about 15 minutes, about half of which is outside; and on the way back to my office I often count the bird species.  Sometimes it's only sparrows and mynah birds (local equivalent to starlings...) and a couple of common species of dove, but on a good day I might see red wattled plovers, Indian rollers, bee-eaters, sunbirds, Francolin partridges, unidentifiable ting brown birds, parakeets and... hoopoes.  Always lifts my spirits to see hoopoes and rollers. And they need lifting after seeing that drip stand festooned with bags of stuuf and flashing lights like a minimalist Christmas tree.  I've not seen a golden eagle here yet, though!!!

    Expat

  • Dear Lorraine,

    I can't believe how much you're fitting in!  Truly inspirational.  Building and moving and clearing out and taking breaks when you can. Take care of yourselves over your next break, and enjoy that birthday together!

    Expat x

  • Dearest Elkay, all that you have been through makes you the amazing women you are today, and all I can say is if some couples lived together for a thousand years they will never have what you have Godbless you Both XXXXX

  • What a difference a day (or two) can make to a happy, excited posting.  The discomfort Ian's been feeling in one testicle and his groin became outright pain and is being investigated by ultrasound urgently tomorrow morning.  He is now on an oral morphine and needed three doses to get through the night last night.  The GP is adamant that we should go away for my birthday trip.  It's pretty clear to me it'll be my last birthday shared with Ian and probably our last break away from home together.  The Teflon Two are head-butting reality now..........  I've cried a little bit but I'm pretty shell-shocked really.  We are still going to meet the building company today to look at house plans and I guess Ian's having Erbitux this afternoon (though I haven't asked him yet) - still going through the motions I guess.  My heart's not broken - yet - but I can feel a little crack opening up in it....  and now I am crying so I'd better stop typing and scrub my face and go back to bed and hug Ian.

  • Oh Elkay... and I was just about to post a reply to your previous post as you made me laugh about the people hurting themselves jumping behind bushes. I am so sorry to hear that Ian is in such pain - awful awful to see our loved ones suffering and to feel so helpless. However much we know what's coming, when reality strikes its so damn hard I know. I often wonder how many times I need to cry about what is coming before I run out of tears and start to toughen up but I think we both know the answer to that and it's not a helpful one... I hope that Ian's doctors can get this too under control and you get many more trips away - am crossing everything for you both and sending virtual hugs...

    Vikki

  • And I was just having a shower to get ready to go meet the builders & Erbitux and I thought "Silly Cow, you didn't wish Vikki luck with her papers...."  You are AMAZING - I'm supposed to be typing up an Advanced Directive for Terminal Health Care - pretty much per the sample given to me - and I have managed to avoid the job for three weeks now.....  I think this might be one strong woman (me) complimenting an even stronger woman (you). 

    Lorraine

  • Dear Lorraine,

    I sincerely hope that they find out what's causing this pain and that it is an infection, not a 'new normal.'  And if whatever treatment he needs to deal with the pain needs a few days adjustment then postpone the birthday for a few days.  We had to do that with my birthday this year - the actual day is in February, but my birthday treat didn't happen until the end of March.  And our wedding anniversary (15 September) is still pending. Take care, Expat xx

  • What a crazy rollercoaster ride this is.  I don't see how this can be an infection given that Ian's been on antibiotics to deal to the Erbitux side-effects rash and yet that would be the "best case" scenario wouldn't it?  From 10pm last night he needed 15 mls of oral morphine to get through the night, then another 2.5mls at 9am - but hasn't needed any more during the whole day and even now says he feels good.  He had two paracetemol at 11am before we met with the builder and nothing since.  Beggars belief.  We've met with the hospice nurse who has armed us with information on coping strategies for pain and constipation from the pain relief and said "Catch that plane!"  So we'll get the ultrasound done in the morning and race for the airport.  Cross your fingers for us.........  and you take care!!!  Lorraine