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.

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  • So my discussion is called "I hoped I would never post this discussion."  Well it goes without saying I never, ever wanted to type this.....

    We were lucky that this last significant appointment was with a kind, gentle, honest, compassionate man - head oncologist of the hospice team.  The hospital oncologist was I am sure kind/gentle/honest/compassionate in his own way - but I seemed to bring out the confrontational/aggressive side in him.

    We touched on the weather, our journey from home, and my head was screaming "Just get on with - we are braced for it."  Perhaps he saw the steam venting from my ears or the crossed eyes because he very quietly said, "It's not good news I'm afraid."  Six words to break your heart

    What on earth did I imagine?  I'm sorry, we were all wrong, your husband has a massively ingrown toe-nail.  We have a nurse on stand-by with toe-nail clippers and we need never see you again...........

    The long and the short of it -

         The lung tumors of July 2011 have increased in size and have been joined by many more

         The "mass" is now huge - 15x15x11 cm - if you don't want a fright, don't get out a pen and paper and ruler like we did - no ascites/abdominal

              fluid for Ian, that belly is holding in a massive growth

         Just as I suspected Ian's spine is being attacked - the mass is leaning against two vertebrae and they are being eaten and it's their

              calcium that is upsetting Ian's blood/calcium balance

         And the killer blow - a tumor in each lobe of Ian's liver

    A blood test at 11am showed the blood/calcium balance had been fixed in just 3days.  That will be checked every 2-3 weeks and fixed with another IV if it climbs again.  Turns out the huge fatigue wasn't the Nozinan anti-nausea tablets at all.  This blood/calcium has been the major cause for many weeks - undetected by those who have Ian in their care.  My research on the internet (on respectable sites including this one!!) showed that some people have blood/calcium within the normal range have significant side-effects; others have significantly high blood/calcium with no side-effects.  The Nozinan was just a curve ball I guess.

    The lovely doctor didn't just deliver the killer blow and say "Lovely to have met you, we must do it again some time."  No ten minute interview a la public hospital for us yesterday - one hour talking through the situation, giving us the information we need to get through this.  I am going to email him today to thank him (too shell-shocked on leaving his office to even shake his hand) - we appreciate the time, the honesty and the privilege of having the CT done - it's not normal hospice policy - and I guess most dying people don't want the details anyway.

    So it's Plan B for the 36th wedding anniversary on 5th February.  No Plan A cruise ship from Sydney for us, sailing out past the Opera House, past seaside restaurants we have eaten at, out through the heads and across the Tasman.  I had it all worked out.  Just a few days in Australian waters, then no-man's land of the Tasman Sea, then we'd be visiting New Zealand ports, all with NZ hospices and health system should things be going wrong.  Ian so wanted to sail down Sydney Harbour in a big, loud, brash cruise ship.  We'd even seen her while we were in Auckland - Holland America's Oosterdam!!  Perhaps that's the cruise I will do for my first tentative lone adventure.

    So no Plan A.  But Plan B will be nice.  Many weeks ago I saw tickets for Alan Davies, the British comedian and our hero from Qi on TV.  He is doing a show in Wellington on 6th February.  I bought the tickets in the hope they would be wasted, or given away to friends, but now we will use them ourselves.  We watched several "Best of Qi" last night to lift our mood and I, for one, think we'll have a lovely laugh on the 6th.  Today I will look for a really good hotel with lovely harbour views that's a short walk from the theatre.  The doctor has ordered a blood test for one week before The Main Event so that an IV can be done and dusted and Ian back on an even keel - we don't want the Groom incapacitated, let alone sleeping through his anniversary do we??

    We had 1-1/2 hours with the hospice social worker after seeing the doctor - she's the lady who has been with us, at the hospital first and now the hospice, for 6-1/4 of the 7-1/4 yr journey.  She saw how beaten we both were; listened when I said I was so afraid I just wasn't up to the job of keeping Ian at home until the end; and I am sure she was gob-smacked when the fiercely-independent, "I won't take charity" Lorraine accepted everything she offered in the way of physical help and support.  Soon, when I have come to grips with this, I will make contact with a private nursing service for night-time help for "when the time comes."  The public health/hospital system nurses can only come by day - not sure if they are vampires or prostitutes by night and therefore too busy to help   I am to have 1-1/2hrs weekly of home help, vacuuming etc.  Andrea is checking out good, nutritious ready meals at, of all things, Aged Concern, a charity for the confused and elderly.  Well I guess it's appropriate - I am concerned I will become aged one day and I am most definitely confused.   Their meals are for sale to all-in-sundry and we fit that bill.  In the meantime I spent an hour in a supermarket yesterday buying up tinned meals, pouch meals, frozen meals, you name it - so I will no longer have the "staring at the lump of meat wondering what to do with it" scenario!! 

    I sat with Ian's Mum for the three days until she passed away and again with my step-grandfather two years later.  I know (or I think I do) what to expect at the very end - it's the weeks leading up to the end that frighten me witless.  Andrea, bless her, realised the significance of my dread of vomit and will make sure that the nausea bases are very definitely covered.  A huge relief for me.  Stupidly that was one of the reasons I was happy when Ian said 36-1/2 years ago that he wanted children and a mortgage like a wart on his bum....  I don't do vomit, sleep deprivation or open wounds!!!   And, by the way, he did get the mortgage hahaha - and what a beauty by the time his private chemo got paid for

    So quite a bungy jump yesterday - not just heads dipping into the river below by an inch or two - plunging down to our waists I think.  Thank goodness we are not in Papua New Guinea where our NZ bungy man got the idea - they jump down to terra firma there - ouch!!!

    I know we can come back from this in a few days.  We still have our new home to plan together.  I doubt we will live in it together even though it's only a 12 week process in New Zealand.  But I have Ian's input on many decisions.  We have the moggies for laughs (and exasperation).  We can still lie together after lights out and put the world to rights - you don't need to be (a) energetic or (b) vertical to put the world to rights do you?

    What a 24 hours that was - and it wasn't the worst thing that could happen was it??  That has yet to happen and it is probably only weeks away - but then again my 'onray critter defies the odds and digs deep and just keeps on keeping on - and I love him for it.  Time to go and wake the critter and take his order for  breakfast in bed

    Lorraine

  • Hi Lorraine, I'm really sorry that it has take me so long to come back to the site but I feel a fraud at the moment reading your stuff as Hubby is so well (as Ian was once upon a time!) and we have just been living our lives.  I cannot believe we started this journey exactly a year ago today - I hadnt realised that it was today until I looked back through my stuff on here - that's spooky and a little unnerving.  To be quite honest I didnt think he would still be alive this time this year but he is, and much weller (if that is indeed a real word) than last year.  The latest scan in October showed significant shrinkage of the tumour in the liver and no tumours anywhere else that could be detected, so he's in remission at present and we are just going about our lives as normally as anyone can with a stage four diagnosis, chemo every other week and scans every six months.

    I have read your latest post and you and Ian are often in my thoughts - I look at you as my future, make notes of all the drugs and treatments so that when our time comes I know what to throw at them.  You're my inspiration.  XX

  • Hi Lyn - magic, wonderful words - "just living our lives."  That's as it should be.  I am so glad you have been "quiet" because you two are just getting on with living with cancer.  Like you said, how spooky that it should be a year to the day when you came to the site to post back to me.  What a year it has been for us both eh??  And yes, weller sounds like a real word to me - your hubby is weller than last year and that year becomes a massive bonus and reward for digging deep and boxing on day-after-day.  I hope all your notes grow old and faded and "your time" never comes.

    And thank you, if I am your inspiration and an inspiration to others on this site, it makes the agony and the terror and the desperate sadness just a little worth while, to be able to reach out and help others get through.

    I am having a very large, though very watered (or should I say soda-ed down) white wine as a reward for going down into the township to be ignored by people I have known for years while I stand in the chemists waiting for the latest round of drugs.  It's hard to be treated like a leper in a town I have lived in for 57 years but builder's willing, my new home will be ready 30 miles away in a few months and I can drive off into the sunset (very drama-queenish) without a backward glance - hopefully with Ian (rather than his ashes) at my side!!!

    Keep on being well, both of you.  It would be lovely if you could grow a lot older and more crotchety together wouldn't it??? 

    Lorraine

Reply
  • Hi Lyn - magic, wonderful words - "just living our lives."  That's as it should be.  I am so glad you have been "quiet" because you two are just getting on with living with cancer.  Like you said, how spooky that it should be a year to the day when you came to the site to post back to me.  What a year it has been for us both eh??  And yes, weller sounds like a real word to me - your hubby is weller than last year and that year becomes a massive bonus and reward for digging deep and boxing on day-after-day.  I hope all your notes grow old and faded and "your time" never comes.

    And thank you, if I am your inspiration and an inspiration to others on this site, it makes the agony and the terror and the desperate sadness just a little worth while, to be able to reach out and help others get through.

    I am having a very large, though very watered (or should I say soda-ed down) white wine as a reward for going down into the township to be ignored by people I have known for years while I stand in the chemists waiting for the latest round of drugs.  It's hard to be treated like a leper in a town I have lived in for 57 years but builder's willing, my new home will be ready 30 miles away in a few months and I can drive off into the sunset (very drama-queenish) without a backward glance - hopefully with Ian (rather than his ashes) at my side!!!

    Keep on being well, both of you.  It would be lovely if you could grow a lot older and more crotchety together wouldn't it??? 

    Lorraine

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