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,

    You are an inspirational woman. I have read back over this thread and what an awesome advocate you have been for your husband. If anyone does battle with cancer, they should have someone like you fighting in their corner. Well done! You have lived and breathed your marriage vows over these past years and I honour your strength and tenacity and desperately needed bolshiness. I hope your challenging approach has forced professionals in the kiwi healthcare system change their approach to patients and to their dedicated carers. That is YOUR legacy from this horrible situation.

    My thoughts, caring concern and as much strength as I can send are rippling their way down from Auckland to you as you continue forward in the final stages with Ian.

    x waterbabe

  • 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

  • I'm not one for words, but I do appreciate all the ones you have written and that you feel trusting enough to share your journey with us. As has been already stated you are an inspiration. I know I can take some comfort whenever I see a reply to my posts with your name attached as they always make me feel better. I only hope that when I do walk in your shoes and make my "I hoped I would never post this discussion" post I can be as brave and level headed as you are. Thanks.

  • So here we are sixteen days after my last proper posting.  No more huge bungy jumps since then really.  Just a slow, though obvious deterioration in Ian's energy and mobility.  He gets up mid-morning most days but he doesn't head for his armchair any more.  He is getting pain in the top of his left leg (not quite his groin) which the morphine isn't dealing to.  The hospice nurse has today changed the pain relief which will take three days to kick in but she and the doctor feel they are chasing nerve pain from the damage the cancerous mass is doing to Ian's spine so the normal "go to" pain relief of morphine won't cut the mustard.  If they can get on top of that pain Ian may be more mobile and comfortable.  I just hate seeing him sliding downhill.  I thought I was prepared for this part of the journey - I DIDN'T HAVE A CLUE!!  I have this deep ache inside me.  I hardly ever cry.  I am as cheerful and ditzy as I can be around Ian trying to keep both our moods' light and happy but I just want to walk to the other end of our four acre block and howl and howl like a banshee.  I have some physical release for my anger (because I have lots of that).  A builder wanted $15,500 to put the finishing touches to Ian's bathroom renovation and to build 58 metres of concrete garden paths to finish off the outdoors.  I want both done so Ian can see our home finally finished before he gets really sick.  But we don't have that sort of money spare (given that I am prepared to hire a night nurse towards the end to help me cope and keep Ian at home).  So I am using a sledgehammer to drive pegs into the ground and then hammering 4x1 timber to make timber edgings and when they are done I will get a truck load of gravel delivered and barrow it to the garden paths.  That is ensuring I sleep well at night and I have an excuse when I bash my thumb with the hammer for a quick cry when things get on top of me.  As for the bathroom, Ian has ordered two sheets of gib/drywall sheeting and if I can't find a cheaper builder I'll have a go at that as well.  Girls can try/do anything can't they???  Ian feels awful about not being able to help - he often doesn't have enough energy to even come a few steps outside to look at what I've done.  And then he ruins things by criticising how I've done something - which I resent deeply.  I have promised him (in a hissy fit) that I will make sure the real estate agent tells anyone looking at our house in future that the wife did the paths, not the husband.   The hospice have provided us with 1.5 hrs per week homecare and a lovely Irish lady comes on Wednesdays and chats and gives Ian cheek and vacuums etc.  She's an absolute delight and she's very comfortable in the home of a dying man - something most of our friends can't manage.  So I've just got the landscaping and cooking and dishwashing to sort these days - doesn't sound like much does it - so why am I desperately exhausted all the time?? 

    Still hoping for that 36th wedding anniversary treat in Wellington.  The new meds take three days to kick in and I hope to drive us down there on Monday.  It'll be touch and go but the 2 1/2hr journey just won't be do-able if the pain Ian gets sitting hasn't been dealt with by then.  So cross your fingers and your eyes for us please

    Lorraine

  • 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

  • Hi Lorraine

    I so admire you and your courage and energy - and I bet you're sick of hearing that!!!  It is like being in a parallel universe isn't it, when they are reaching the end of this so-called journey and yet life and all of its requirements need to go on. I too kept joking around and keeping it light, whilst always feeling that deep well of sadness grow inside. And that resentment of the criticism when we're working our arses off keeping everything going - I felt that too, but take it from me when I say try not to feel it (hard I know), as later you may regret it... I know I do, even though even at the time I understood that it wasn't really Chris criticising how I was doing something, or at least that it wasn't personal; it was more the fact that he desperately wanted to be able to be the one doing it and in his own way, and it felt so unfair to him that he couldn't. The regrets over how I wish I could have been more patient/forgiving etc still gnaw at me. Ahhh just saying that brings the tears on. Sorry, don't mean to turn this post into being about me! I just want you to know that you're not alone and that all the best wishes and vibes are flying your way - from all over the globe I suspect - certainly from me here in Clogland. Crossing everything for that anniversary treat.

    Vikki

    xxxxxxxxxxx

  • Thank you Vikki - for everything in your post.  And your post wasn't turning into one about you - it is very much about us both!!! Every wife or husband who has lost or is losing their special "other half."  Many thanks too for crossing everything - though mobility may now be an issue for you if your legs are crossed .  The new pain relief will take three days to really kick in - so if things aren't looking great still by Sunday I will cancel the apartment before a cancellation fee applies and then rebook on Monday if we are "good to go."  I used to be a demon office manager so I can still do a bit of organising despite the mushy brain hahaha.  I saw your post to Gioux - you are kind to reach out to her!!  Clogland is lucky to have you 

    Lorraine

  • Hi girls

    Just wanted to say am thinking of you and you are both very wonderful people. If I cope half as well during my husband's cancer journey I am sure some of it will be because of the support here. My occasional meltdowns just make me want to try harder. Somehow you can never do it all but we all try so hard. Hope today is better than yesterday and that you have many happy times to take you through the tomorrows.Take care and hugs to all Jules

  • THANKS TO TRUST ANDROID PHONE - AND ENOUGH PRACTICE TO NOW BE ABLE TO USE IT WITHOUT HAVING STEAM VENT OUT MY EARS WITH FRUSTRATION !!! - I CAN UPDATE MY POSTS.

    HOW LUCKY IAN AND I ARE RIGHT NOW.  ON HOLIDAY - YET AGAIN- AFTER LAST MINUTE DRUG-CHANGES AND THEN DOUBLING OF THOSE DRUGS - ONLY 100 MILES OR SO FROM HOME BUT STILL A HOLIDAY.  PROBABLY THE LAST TOGETHER BUT I'VE THOUGHT THAT LOTS OF TIMES BEFORE AND YET WE'VE BEEN ABLE TO SUCK A BIT MORE FUN OUT OF LIFE AGAIN AND AGAIN. 

    IAN CAN ONLY WALK VERY SHORT DISTANCES NOW. HE MANAGED A FLIGHT OF STAIRS TO A WONDERFUL RESTAURANT YESTERDAY BUT I COULD SEE WHAT THAT COST HIM AND HE REALLY STRUGGLED TO FIND THE ENERGY AND ENTHUSIASM TO CHOOSE, LET ALONE EAT THE GORGEOUS FOOD. LAST NIGHT WHILE IAN SNOOZED IN THE HOTEL I WENT TO A PLAY 5MIN WALK AWAY. IT WASNT VERY GOOD BUT I VALUED THE CHANCE TO "TEST MY WINGS" AT DOING THE STUFF I ENJOY BUT ALONE - AND I SPENT THE INTETVAL RINGING IAN TO TELL HIM THANKYOU.  HE HAD STRICT INSTRUCTIONS TO RING ME IF HE HAD PAIN OR BREATHLESSNESS (BECAUSE THE NEWEST FOE IS BLOOD CLOT FROM A HEART VEIN BEING SQUASHED BY THE "MASS") AND I HAD MY PHONE SET ON SILENT AND VIBRATE AND I CLUTCHED IT TIGHTLY FOR TWO HORS!!!  IYS ALL ABOUT COPING STRATEGIES...

    SO TOMORROW WE RETURN HOME - AFTER HOPEFULLY BOTH OF US ENJOYING ALAN DAVIES SHOW TONIGHT.  OUR NEIGHBOUR ADMITTED BY TEXT LAST NIGHT THAT OUR FURBABIES ARE LEADING HER A MERRY DANCE AT BEDTIME EACH NIGHT. I HAD PROMISED HER ONE BOTTLE OF PROSSECCO AS REWARD - NOW I THINK I HAD BETTER BUY TWO HAHAHA

    11AM HERE IN SUNNY NZ - BETTER SHIFT MY LARGE, SORRY POSTERIOR - HOUSEKEEPING WILL WANT TO SORT THE ROOM AND WE ARE BOTH STILL IN BED LOOKING OUT ACROSS THE PRETTY HARBOUR.  BRSIDES I HAVE PROSSECCO TO BUY - AND MAYBE A THIRD BOTTLE TO CHECK FOR QUALITY-CONTROL.

    LORRAINE

  • Hi Lorraine,

    So glad you and Ian were able to make the trip to Wellington and I hope Alan Davies lived up to expectation - I think he's fabulous. I love him in QI and in that mystery show he does... the name escapes me.

    Well done you on going to the play by yourself as well. I have been to the movies once by myself and felt very brave but really enjoyed it.

    Hope the trip home is uneventful and you'll be back with the purr-babies before you know it.

    x waterbabe