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
  • Hi everyone

    I logged on to do a quick hello and say I was doing OK and me being me couldn't help myself and posted to Newzealander1 because his situation resonated strongly with me.

    Always did have verbal diaorrhea, me!!

    As I say I am OK.  I don't seem to have a minute to myself to post properly but I wondered if you thought I was OK.  It is very surreal to be alone.  We were married 36yrs and 52 days.  For the last 21 years 3 months we had been almost inseperable, running our business together and working on our farmlet in our free time - oh and of course eating at lovely cafes and taking wonderful holidays together.  I was almost never alone - so why do I feel Ian will drive in the driveway in a few minutes and I'll start getting the tea on??  I am sleeping unbelievably well - not even scared - yet I was sure I would be.  My furbabies are not a comfort - still too warm to sleep with Mum and comfort her - the tables will be turned when the weather gets cooler I am sure and then I shall spurn them!!!

    A friend who had disappeared when the going got tough for Ian and me has reappeared via text message.  I meant to type and save as a draft a very angry, honest reply - and hit SEND in error (or was it Ian's finger!!).  She replied this morning that she appreciated my honesty, doesn't know if she can be the giver I need right now - but she will try.  She and her husband split up a month ago.  Even I know to lose a husband "in life" rather by "by death" is horribly tough.  So we will have homemade chinese tonight and toast Ian with a glass of Asti Riccadonna and try to find a new level of friendship.

    My friend Sue, who did all the nursing for Ian in his last three days/four nights, keeps saying to me "Build a bridge and get over it."  I am a little tired of the saying - but today I did build one - and it didn't hurt a bit!!

    Lorraine


Reply
  • Hi everyone

    I logged on to do a quick hello and say I was doing OK and me being me couldn't help myself and posted to Newzealander1 because his situation resonated strongly with me.

    Always did have verbal diaorrhea, me!!

    As I say I am OK.  I don't seem to have a minute to myself to post properly but I wondered if you thought I was OK.  It is very surreal to be alone.  We were married 36yrs and 52 days.  For the last 21 years 3 months we had been almost inseperable, running our business together and working on our farmlet in our free time - oh and of course eating at lovely cafes and taking wonderful holidays together.  I was almost never alone - so why do I feel Ian will drive in the driveway in a few minutes and I'll start getting the tea on??  I am sleeping unbelievably well - not even scared - yet I was sure I would be.  My furbabies are not a comfort - still too warm to sleep with Mum and comfort her - the tables will be turned when the weather gets cooler I am sure and then I shall spurn them!!!

    A friend who had disappeared when the going got tough for Ian and me has reappeared via text message.  I meant to type and save as a draft a very angry, honest reply - and hit SEND in error (or was it Ian's finger!!).  She replied this morning that she appreciated my honesty, doesn't know if she can be the giver I need right now - but she will try.  She and her husband split up a month ago.  Even I know to lose a husband "in life" rather by "by death" is horribly tough.  So we will have homemade chinese tonight and toast Ian with a glass of Asti Riccadonna and try to find a new level of friendship.

    My friend Sue, who did all the nursing for Ian in his last three days/four nights, keeps saying to me "Build a bridge and get over it."  I am a little tired of the saying - but today I did build one - and it didn't hurt a bit!!

    Lorraine


Children
  • Hi Lorraine,

    What a wonderful outlook you are showing us on here.  You travelled the cancer road with Ian every inch of the way, made the most of his well times, suffered with him during the bad times and have been totally inspirational to anyone who attached themselves to  your thread.  I have read (first in fact) your post to NewZealander1 and your way with words is amazing. I felt like you were talking out of my computer and imagined you sitting there with a glass  of wine (hope there have been a few toasts by now) and showing us that your life. though so newly alone, is actually filled with everyday things (with Ian your guiding light). Thank you Lorraine for being human, being there for others in such a caring way. Your motivation may flag from time to time (whose wouldn't) but am sure Ian is telling you to live that live you love and with his blessing.  Being honest with your lost but now re-found friend (even if it was accidentally on purpose) is a credit to your character and I hope you enjoy that chinese and that the bridge will carry you both into a better understanding (on her part). Good friends never go away completely (they just rest from time to time when they cant cope!!). Wishing you well and thanks for posting as you are so right, I think I can safely speak for all those who have posted here that we wondered how you were and would love for you to stay in touch when you want to.  Hugs coming your way from a chilly outer London.Jules

  • Hi Lorraine, I hope you and your friend can re-establish some sort of relationship at this time, talking will help in some way I'm sure and having friends at this time is important.  You may just need a sounding board at some point to rail at the world and get angry with and I hope you have the sort of friends who will understand this.

    Much love

    Lyn

    XX

  • Hi Lorraine

    Just read your message about Ian.  He is no longer suffering from any pain and he will never leave you.  I am sitting with tears in my eyes writing this.

    Look after yourself and take care.  I hope you have plenty of people to turn to at this time.

    Mickied

  • Hi Lorraine,

    You are one strong brave lady !!  Glad your ok, I love the way you look at things in such a positive way thank-you for taking the time to let us all know how your doing we are all thinking of you.

    Love Gioux xx

  • Hi Lorraine Im so sorry to hear about Ian I have been reading yours and Ians  inspirational story and  gathered so much strength from it.

    My love to you Pam x x x

  • Hi Elkay, me again - ok so we are both on the same side now....at this s***ty party by ourselves. I find I am  functioning apparently normally - according to others - for about 85-90% of  the time. But at least twice a day go into complete meltdown.  Fortunately the house I am in at present is detached and fairly  soundproof so my howling like a deranged banshee does not seem to  disturb anyone else. I do permit myself some normal level snivelling  when in front of others but THE BIG STUFF I have managed to contain for  when I am alone. Which is actually most of the time now . I was very  fond of saying to Ray , especially after a particularly gruelling  surgery or chemo bout "I would do it for you if I could. " and I meant  it. I would gladly have taken or shared the pain if it could have saved  him any suffering - Well I am now.....All of us left at The Party by ourselves now take the full burden of pain and suffering - but our  boys don't have to now. On the really bad days / howling sessions I  remind myself of that and it does help a tiny bit. Also if you have a really  good meltdown session you find your nose gets so blocked and gungy  you can't  breathe so you have to stopafter about twenty minutes!.

    I try when going out into the normal world  to pretend I am "normal" but can manage to introduce Ray into any  conversation within 2 or 3 minutes - especially to total strangers -  they tend to look a bit bemused when I suddenly announce he has just died - carrying photos is also helpful for this. PLEASE don't think I am being  in any way flippant or underplaying the grief - it is huge and alll  encompassing- but Ray was so brave throughout his treatments and  especially when faced with treatments etc. He always chose a  particularly bright coloured shirt if he was feeling low as part of his  armour against the world. I am trying to use the same technique. I  loathe living here by myself but paradoxically don't want to be with  anyone else - I just want Ray back - but I guess that's not likely to  happen... I am taking one day at a time and trying to pretend he is  standing behind me watching my progress - I do want him to be as proud  of me as I am of him. You may not have had your smile at the end but you did get the "I love you" and that is worth it's weight in gold. Besides technically Ray was actually gone at the point his face was in a smile so I am not sure if that truly counts! I have just been to see my daughter for a few days who lives in Ibiza Spain - she had dragged me out to a cancer charity bash with loud music etc etc, I was feeling a bit sorry for myself when suddenly behind the bar I spotted  bottle of Ray's favourite single malt whisky "Four Roses" - We never ever see it anywhere - so very weird  - I thought I would order a shot and toast him even though I am not a whisky drinker ---forgetting that a Spanish measure is about three of our measures.... the afternoon brightened considerably for a short while and i bet he was laughing at me.

    I am sorry if you think it a liberty but I referred to you in a post to another newbie "If you want to read about the journey of a really  brave lady have a peep at ELKAY... She is amazing as are many others on  this site" - I am working my way around - best luv sueps