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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  • A few more "alone" days have gone by.  It's obscene how quickly the days have passed since Ian died.  Newbie/Russ contacted me direct and said I probably had a hole in my world the size of Ian.  It was beautifully put and so descriptive of how I feel. 

    I couldn't shake the image in my head of the "corpse face," waxy and completely unlike my lovely Ian's face.  Every time I tried to bring his face to mind I got that image.  When Marianne went home the other night after our Chinese reunion I had a brain wave.  All the photos from the cruise photo opportunities that I had bought because we always looked so happy and relaxed and hopeful were sitting in my filing cabinet.  I dragged them all out and rushed about the house pinning them to kitchen walls, bedroom walls, bathroom walls. 

    Not the brightest idea as it turns out.  The "corpse face" reminded me of how very sick Ian was - how only death was going to stop the pain and the suffering.  Now I am surrounded by a fit, happy, vibrant, sexy man and my loss is somehow immeasurably bigger.  I even have a lovely photo of Ian on the right half of my computer screen, taken on Christmas Day 2011 smiling happily into the camera, even though just two days before the oncologist had said the five months of chemo hadn't worked.  That man deserved to still be alive, eating, drinking, laughing, getting oil and grime under his fingernails at work!!  So take a word from the wise, newly bereaved, maybe it's better to keep that desparately sick image in your head until you get used to your beloved being gone.  Damage is done for me, though!!

    Ian didn't want a funeral service - didn't want to give hypocrites an opportunity to "pay their respects" to him after his death - whilst never coming near him while alive.  I have waited a few days and put an Acknowledgement in three newspapers.  A sort of obituary/death notice/thanks notice.  Despite living in a very small town (6,000 population) word apparently hasn't got about that Ian has died.  I imagined the tom-tom drums would have done the trick - along with comments about the weird way I dealt with his passing.  But no, word is filtering back that lots of people are making favourable comments about a lack of huge funeral service; that many would want for themselves what I have done (or not done as the case may be) for Ian.  The fact is that is what he wanted - and neither of us ever cared about being conventional.  We never wanted to have children and were very open and honest about that with anyone who harrassed us about the subject - pretty strange behaviour 36 years ago in most circles.  We have always done things our way.

    My notice in the newspapers read:

    Ian had a strong work ethic, a huge capacity for fun and an enormous love of travel.  He was incredibly proud of his automotive business.  His DIY skills on our two homes over our 36 years together were amazing.  When Ian became ill with colon cancer in November 2005 only one or two years remission was likely.  After chemo he threw himself into work and fun until his relapse in July 2011.  It was a long, unrelenting fight until Ian's death at our home on 29th March 2013, aged 61 years.  It was Ian's wish to be cremated without any ceremony but he wanted me to acknowledge the wonderful support of the following people, particularly in the last few weeks.....

    I went on to name the close, old friends who had supported us and some much newer but equally wonderful friends and then Ian's sister and her husband, their son and his wife and my aunt. 

    My parents and Ian's brother and my sister (who are married to each other) haven't had anything to do with us for years - it appears they do not "do" cancer - Ian and I would have loved not to "do" it either.  My brother is allergic to terminal illness and had only texted for several years so he didn't come under the "supportive" category either!  I had drafted the notice with some very bitter comments and when I read it out to our nurse friend, Sue, at 2am after Ian had died she gasped and declared I couldn't say that stuff.  I ran the draft by another newly-bereaved friend who had known us for 35+ years and she said the same.  So I rewrote it, leaving out any reference to the toxic family and the nasty ex-business partners (who still haven't so much as sent me a bereavement card) and I think the notice says more with its ommissions than it would have with its vitriole.  So my two friends did right to reign me in....!

    I have had an OK day.  I made a huge vegetable soup yesterday that would have only lasted the two of us a couple of lunches.  Perks of being on your own - the food lasts longer.  I sat outside in the autumn sun with cats spread about, sipping soup and reading a magazine - an unheard of pleasure a couple of weeks ago when having a moment to myself was unthinkable.  And I yearned to return to those days.....  I surprised my lazy body this morning on getting up when I did half an hour on my treadmill - and completely shocked it tonight when I did another 1/2 hr while I waited for Sue to bring fish and chips for our evening meal.  I was supposed to be teaching her how to use her android phone after that but she has gone home to bed because the battery isn't even charged - lessons abandoned for the day!!

    So it's 10pm here in NZ - daylight saving ends tonight and Ian never showed me what buttons to push on the various clocks in the house.  If he doesn't come and guide me in the morning, I'm going to be late to every appointment in the next six months

    Time for bed. 

    Thanks again for the lovely posts to me from you all.  I am so glad I found you all!!  And Sueps - when I read your posts, it's like reading one of my own!!!  Have you stolen my identity hahaha   You are only a step or two ahead of me on your Newly Alone Journey.  It's lovely for me to read of someone else who is making the best she can of sad times - and reaching out to others is one of those ways to make the best of it.

    I am catless tonight - my friend left the front door open when she went to her car to get her phone and my darlings all abandoned their roaring fire and disappeared into the night.  I wonder if I will wake in the middle of the night trussed like a chicken with furry bodies down either side of me???

    I have just glanced again at the lovely photo on one side of my computer screen - I think I need to try and find some grumpy photos of Ian or I'm going to have to buy more hankies!!

    Night night y'all.

    Lorraine

  • Hi Elkay i am so sorry for your loss. I have been following your story like a lot of other people on here, and you are such a brave woman that has given me so much inspiration with my own battle with cancer. I haven't been on in a long while , but when i was new to the chat in june/july your posts always provided me with a lot of confort and strength and a smile to face  as they did with so many others on here. How are things going with you at the moment and did your cats come back that same evening :)?
    Right back soon.
    Lots of love and hugs =]
    -Mya
  • Hi Lorraine

    I just read your message too and I am starting to fill up.  My mum could relate to a lot of what you said after my father died.  They would have been married 49 years this December and they knew each other from the age of 15 a very long time. 

    I can't believe some relative said they cannot "do" cancer.  Who in their right mind wants to "do" cancer.  Some people make me mad but you have to forgive them sometimes because they come across as being ignorant.

    I am glad you have some good friends to turn to and I hope your little bundles of fur return very soon.  They sometimes say animals are affected by the death of an owner too.

    I wish there was something I could say Lorraine to make you feel a lot better but there isn't.

    Just take care of yourself and sending you some hugs

    Mickied

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  • Hi Lorraine

    I just read your message too and I am starting to fill up.  My mum could relate to a lot of what you said after my father died.  They would have been married 49 years this December and they knew each other from the age of 15 a very long time. 

    I can't believe some relative said they cannot "do" cancer.  Who in their right mind wants to "do" cancer.  Some people make me mad but you have to forgive them sometimes because they come across as being ignorant.

    I am glad you have some good friends to turn to and I hope your little bundles of fur return very soon.  They sometimes say animals are affected by the death of an owner too.

    I wish there was something I could say Lorraine to make you feel a lot better but there isn't.

    Just take care of yourself and sending you some hugs

    Mickied

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