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.

Parents
  • Hello Elkay,

    Im so sorry to hear about your hubby, it is now a year tomorrow that I lost my hubby and you were very kind to me as was everyone one here during my darkest days and nights..........I know you are going to feel that your world has ended as I did, but you can get through it, it will not be easy and Im not going to lie to you, you are going to have to be stronger than you have ever been in your life, but from reading your messages I know you are a strong good lady and although I cannot prepare you for what is to come and although you will never forget, day by day, week by week and month by month it does somehow get easier, dont ask me how as I dont have the answer, and my life in the past 12 months has changed beyond recognition as I think I have, but I tell myself daily that my hubby would want to see me smile and find some happiness somehow in my life.

    I send you love and hugs to both of you, and pray you have the stength to get through this as I know you will.

    Take care

    Kazzakaz xxxxx

  • Hi Kazzakaz

    Lovely to hear from you.  Your post to me appeared on my cellphone as I sat in my car beside the building site of the new home Ian and I planned together in the small city thirty miles from my current hometown.  I had done a "Sarah Beeney" type inspection, as I do every Wednesday when I travel to the city to do some shopping, sometimes get my hair done, and one of these days when I actually have an hour or two to spare, to go to the movies.  Tomorrow if it isn't raining the concrete floor will be poured.  I said I might come back to watch but the builders said they'd be doing it at 6.30am - sorry! not that excited that I'd forgo a couple of hours extra in bed with a good book. 

    Life is strange without Ian but I am OK.  Today is the first day in the last week or so that I haven't "lost it" in floods of tears.  At the weekend an elderly neighbour called in and made the comment that he still expects Ian to answer the door.  I lost it.  Poor man gingerly patted my shoulders (what am I? a poodle??) and then obviously thought I needed proper comforting so he gave me a hug.  He of course got more woman than he bargained for.  His wife is a little bird of a woman - and I am more Big Bird!!  I was intensely aware of my love handles - and was more determined than ever to lose some more weight hahaha.  I think next time Dave calls in he won't be mentioning Ian 

    I am indeed a strong lady - stronger than I ever thought.  I am doing this next stage of "our" journey alone.  I don't have my lover/best friend/husband physically beside me.  But I feel sort of protected and comfortable alone in the house.  I like to think Ian is looking out for me.  I certainly expected to jump at every noise and be scared to be alone at night and sleepless.  But I'm not.

    One particular ritual is difficult at night.  As I shut the curtains to shut out our early winter nights I pass a lovely photo of Ian and I.  I am hugging him tight and he has one arm around me squeezing me tight and one thumb hooked in his jeans pocket.  We are both laughing our heads off.  Why such a happy photo should "do me in" every evening I don't know but it does.  I short-circuited the system tonight though - when I left for my day out I left the lounge curtains shut so I didn't have to pass that photo on the wall.  So maybe that's my new strategy - leave the curtains shut all day hahaha.

    I am glad you are managing better - I could tell you were in a very dark place for a long while.  Our "old worlds" certainly do end with the loss of our beloved husbands.  But the "new world" can be OK too and I sincerely hope that one day my "new world" will be a lovely place with fewer tears and just a wistful smile when I think of my lovely Ian.

    Thanks for your hugs Kaz.

    Lorraine

  • Hiya Elkay,


    Ah that photograph thing - yep know that one - I had one particular pic of Ray in the kitchen (of course they are everywhere) that every time I ate next to it - 3 times a day - did the grizzle thing . Then by chance someone gave me a potty pic of him wearing a ridiculous leather "pilot's" hat sitting in his maniac Westfield car (bought in defiance after sh*tty prognosis). He looked so daft it made me laugh out loud. It's probably the most unflattering picture of him ever taken (including the morbid post exit pic I took) but now it sits in the kitchen next to my plate. it works... Plenty of other traps to walk into,  so glad to change one.


    Glad to hear you are still my role model - well done - those boys would be so proud of us methinks even with our wobbly bits and wobbly moments.

    All my house jobs done house now on the market - I wouldn't have believed I could have done all by myself.


    luv sueps

Reply
  • Hiya Elkay,


    Ah that photograph thing - yep know that one - I had one particular pic of Ray in the kitchen (of course they are everywhere) that every time I ate next to it - 3 times a day - did the grizzle thing . Then by chance someone gave me a potty pic of him wearing a ridiculous leather "pilot's" hat sitting in his maniac Westfield car (bought in defiance after sh*tty prognosis). He looked so daft it made me laugh out loud. It's probably the most unflattering picture of him ever taken (including the morbid post exit pic I took) but now it sits in the kitchen next to my plate. it works... Plenty of other traps to walk into,  so glad to change one.


    Glad to hear you are still my role model - well done - those boys would be so proud of us methinks even with our wobbly bits and wobbly moments.

    All my house jobs done house now on the market - I wouldn't have believed I could have done all by myself.


    luv sueps

Children
  • Hi Sue

    So I have ticked the "first holiday alone" box and not lost the plot or my sanity   And a happy bonus was that I didn't have to stand beside "that photo" every night and lose it.  I did take a big 10x8 photo with me though - a very formal posed photo on formal night on a cruise ship.  Weirdly that photo didn't make me lose it.  The casual snapshot of me with Ian wrapped in my arms (trying unsuccessfully to protect him from what life and disease was trying to do to him) is the one that does me in - it did again tonight!!

    Ian used to wear his cap back to front when he was mowing the paddocks on his old banger of a three-wheeled mower.  If only I had a photo of that - it would be Ian's equivalent to Ray's "pilots" hat.

    I know Ian would be proud of me "seeing off" the nuisance tiddly businessmen who thought I needed their company, turning on the hotel shower without assistance, doing lots and lots of walking instead of blobbing my butt on a bus, even catching a taxi at 11pm after a show to get back to the hotel safely.

    Lots of jobs left on my list yet to finish the house, although the building company are talking late-October for a finish date so I daren't get too carried away or me and the pusses will be sleeping under a bridge for a month or three.  We can amaze ourselves with what we are capable of can't we?  I would put in a token effort whenever there was hard, physical work to be done, letting Ian take the lead because he loved hard, physical labour to keep him fit and trim.  Me, I'm more your swingseat and good book kind of labourer!!

    Any nibbles on the house yet??  Do you dare go looking for the next house (and risk falling in lust without having sold your own!!).

    Lorraine

  • Evening Elkay,


    Well Morning I suppose to you... Well done on your "Ian Birthday Holiday Jaunt" - it certainly was a big tick on the list of survival. Like you have found there are some good bits, but the underlying ache is very hard to bear. My house sale appears to be going through smoothly and I have managed to find an excellent little house that will suit me very well IF I can get it.


    It's really strange the things that get you, isn't it. I have tirelessly worked on the house to get it ready for sale doing all manner of diy, etc etc all by myself - then the other night the lightbulb on the landing went and I knew I just couldn't reach it safely even with ladders etc.. I was wrecked....Beaten by a damned light bulb... Next day I sussed it phoned the tallest friend i knew AND ASKED FOR HELP.....being alone 5 feet tall I am not well suited to some jobs...


    I agree that somehow it seems as if one is going backwards in the recovery process - like a d*mned rollercoaster. But we battle on us strong girls. Our men showed us how to be brave so we just have to try.


    glad you managed a meet up with a C.C. friend.


    shame I/ you are round the other side of the world!


    regards sueps