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

    So many of your emotions chime with me - I look back on the final few months of my husband's cancer journey and feel so guilty about the missed opportunities to be nicer/more comforting etc etc. But at the same time I know I am only human and if I'm not the most patient person at the best of times, I sure ain't going to be when I'm exhausted, stressed and heart-broken! And the impatient, not always selfless person is the one he married, so I say it's his own fault What I'm trying to say is that we have to go easy on ourselves - which is what I am trying to remind myself as I type this. There is a good reason that sleep deprivation is a torture method - it changes everything and puts a big heavy cloud over everything, so you do have to try and get sleep when you can. Easier said than done I know, and I sympathise with the inability to go for the offers of time away from our husbands (which everyone kept suggesting to me) - there's just too much fear of what might happen in those stolen moments away.

    I'm thinking of you both and wishing I was closer and could actually help, even if only by wielding a corkscrew, which is one of my most perfected talents Hope the results today were better than expected - though even what that actually means is hard to gauge, in a way it just feels like deferring the problem I guess. So I'm not quite sure what I hope for on your behalf, but whatever it is I do hope that the people involved in delivering the news/treatment/next steps etc are the ones who are actually endowed with huge amounts of empathy and sense. Whilst many do have that (in my experience at least) unfortunately not all do and it doesn't take a massive amount of thoughtlessness or lack of imagination for these (usually) well-intentioned professionals to make a terrible situation even more difficult.

    With much love and hugs from the other side of the world...

    Vikki

  • I'll update in a mo' but first thanks Jules and Vikki for your latest posts. 

    I guess Jules you'd like some of our 15degC overnight temperature.  We had cloud cover and lots of drizzle and so the humidity is (to us anyway) appalling - nothing by Singapore standards of course hahaha.  Your "dusting of snow" brought back happy/chilly memories of standing in The Mall three years ago on about 4th January in a blizzard.  We'd been to the cafe in Green Park - the one with the dirt and grass roof.  I was skidding about in my silly smooth-soled shoes.  All we could see down The Mall was the red glows of traffic lights and Buckingham Palace had vanished.  Happy days....

    Vikki, how spooky.  I had a good night's sleep (how can that be after the sledge-hammer blow of yesterday?) and I woke just before 6 and you came to mind.  I was wondering how you were doing and wondered if I should post the question on your Discussion.  Maybe the form-filling and box-ticking has slowed and the powers-that-be are soothed and the paper-shufflers are busy shuffling all the paper you filled in.  I hope your days are busy but lots of people tell me the silent evenings are the worst.  Until the children's bedtime I guess "silent" won't be the word for it!!!  But once they are tucked up, I guess you'll have time and silence on your hands.  Are your friends popping in?? Are Chris' relatives taking care of you??  Can you face the job search thing yet??  I miss my job running the workshop so very much but know I couldn't do it right now - a mushy brain is not good for business - nor is a sad and frightened face - tends to put the punters off don't you know!!!???!!!  Oh, that popping cork sounds good to me from here.  I had a gin and tonic last night, sipped and slowly savoured - get thee behind me Weight Watchers.  Sometimes "comfort food" takes liquid form and usually I guess because of the company the drink is drunk in - crickey, that's not great English - think I'd better have a piece of toast and marmalade before I tackle yesterday in print.  Thanks again for reaching out to me.  From one slightly-selfish lady to another (self-confessed) slightly-selfish lady - our men sure know how to pick 'em eh??

    Thanks again ladies!!

  • 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

  • Lorraine

    They certainly put you both through the wringer today, then at least offered you some support for the weeks ahead. Pleased you saw some medics who understood to a degree what you and Ian need.Its heartbreaking to read how your coping mechanism seems to kick in when you have just been kicked in the guts, Putting the world to rights as you say goodnight must be a fascinating chat in the general way of things as I am sure you both have a different outlook on life after such a long and arduous cancer journey. Coincidentally it will be our 36th wedding anniversary later this year but unlike Ian my hubby wont even talk about any future with or without me. Never the conversationalist, since his terminal diagnosis its like I am just around the house to keep things moving (sorry thats the frustration talking. Who to be angry at, whats the point etc etc. You know only to well how it is.

    An evening with Alan Davies should make your sides ache with laughter; QI repeats and new series keep us both hooked and it is said that laughter is the best medicine (never seen it bottled!!! .which would be cool.

    Well no point beating around the bush, its rotten news for a devoted couple (I read that in your posts as I am  no psychic.  Use those moggies as your stress ball (not too rough) and keep posting when and if you want to,  We on this forum will try to support from afar. At this moment I feel pretty useless in virtual land but know you will use however long you have together to your best advantage.

    May today be as precious as yesterday and tomorrow be more precious still.   

    Best wishes Jules

  • OH JULES I JUST THANKED YOU WITH MY USUAL VERBAL DIAORRHEA USING MY ANDROID CELLPHONE AND BEFORE HITTING THE POST BUTTON MANAGED TO LOSE THE LOT. OLD DOGS???? NEW TRICKS????

    MMMMMMMMMMM!

    THANK YOU SO MUCH.  I HOPE ITS DECADES BEFORE YOU TAKE A WALK IN MY SHOES!!!!! UNREALISTIC I KNOW - ESPECIALLY FROM THE QUEEN OF REALISTIC" BUT HEARTFELT NONE-THE-LESS. 

  • Hello Lorraine,

    After reading your message, I just had to post something and send you some 'mod love'. What you are going through at the moment is so tough and yet you still manage to be so witty and have such a way with words. What an amazing lady you are - Ian could not have been in the care of better hands. Wishing you lots of courage for the weeks ahead.

    Best wishes,

    Lucie

  • Hehe - Glad I am not the only technophobe!!!   I know its inevitable eventually(but then it is for everyone) but I made myself a promise a few weeks ago that I would concentrate on the here and now whilst we can still enjoy a kind of normality.  We have a 5 day break in April planned and thats my focus for now. Also my son has a 9 week old puppy which I think will give us a few laughs along the way. Hubby has next check up Thursday and suspect the only thing they will do is make sure his pain meds are doing the trick which appears to be the case at the moment.  Sweet dreams. Jules.

  • Just wanted to say, ditto, Lucie,  Elkay so glad you had somebody gentle and understanding and you both can feel supported  and helped.

    Plan B sounds great, we also watch Qi and enjoy Alan Davies, so keep up the H2o!  Gardenlady

  • Hi Lorraine

    What can I say to you except I am thinking about you and am so sad to hear this latest news. As i have said to you before i always read your posts and have followed your journey.

    I am glad you are getting some practical help arranged for when you need it.  I wish you strength and courage for whats to come.

    Hope you enjoy Alan Davies and make yet another amazing memory

    Geri

    xxxx

  • Hi lorraine

    I was really sorry to read your news.I dont imagine knowing that it is coming really makes it any easyer.I love that you guys can still chat away putting the world to rights- he needs to stick around for a bit as theres still a lot to fix and if anyone can do it...

    I hope that you have a lovely annivesary with lots of laughter-it is good for the soul.

    I am glad that you are taking some help as it will give you more time for each other.I wish there was something i could say but you are in my throughts

    Best wishes

    Emma