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.

  • Hey Lorraine,

    Thinking of you regularly and it sounds like you're doing well... well you know... in the circumstances.

    Hope you have a lovely trip to Auckland. If you feel lonely whilst you're here, I'd be happy to meet up with you. Totally up to you of course... you probably have your days jammed packed to meet with other close family and friends.

    x Waterbabe

  • Hi Waterbabe

    What a lovely thought.  No, my days are not jam-packed with family or friends.  I have neither in Auckland.  I just love busy cities and lots of water and sitting in cafes people-watching!! 

    Are you in the Private Messaging system on this site?  Can we get in touch in the next day or so that way so I can let you know my cellphone number and the hotel I'm staying at?  Then maybe we could have a coffee together.  Tuesday the 4th is all booked up with my Birthday Lunch on Ian's behalf at Mudbrick Winery but I have no definite plans other than that during the daytime.  I have bought a ticket to Julie Andrews "interview show" at the Civic on Wednesday night.  And I want to go to Kelly Tarltons one day - I fancied that when we were up in Auckland at Christmas but Ian wasn't up to all the walking involved.

    Hope I hear from you via Private Messaging...

    Lorraine

  • Hi Lorraine,

    I've contacted the mods to get the private messaging thing happening. I work during the day but have evenings free so perhaps we could catch up one evening.

    Will message you as soon as I have access.

    x waterbabe

  • Hello Waterbabe77,

    Just wanted to let you know that I have just switched on Private Messaging for you. How lovely that you and Lorraine are planning to meet for real!

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Hi Lorraine

    I hope things are well with you.I am glad to read that you have booked so many trips.You will see those places for ian as well as yourself

    .I think that what you said about having time to grieve before someone dies makes a lot of sense.Perhaps it makes dieing more rather than less painful but i think that it is one of the few things that is lucky about cancer is that it concentrates the mind wonderfully on the time we have because we know how short it will be  and we put value on what we want so badly to keep.Love does not mean that we get what we want but it does leave us tougher than we think.I hope you enjoy your beautiful new house and garden.Gardening is good for the soul.I planted sorrel basil,and tomatoes today and picked a bunch of daisies-i am easyly pleased.

    best wishes

    emma

  • Hi Emma

    Nice to hear from you.  I have ticked another "First" Box - first trip away on my own and all that involves - first checkin for flight alone, first flight alone, first arrival and catching bus into city, first checkin at hotel alone, first "room not ready - here's a voucher for a free drink in the bar" alone, first going up in lift to find room alone, first unpacking alone,  first shower alone (I know that sounds bizaare but I will explain!! ), first time having a drink and snack in Lobby Bar (and being hassled by males ), first time setting off to sightsee alone.  I have ticked them all off one by one and for the most part I enjoyed my six days away.  I dealt with the drink/snack alone by taking a New York guidebook to read up for my one day there in October.  And wouldn't ya know it along comes two males, slightly the worse for wear, who decide the little lady shouldn't be alone, what's this she's reading, where's she going, oh we know New York, this is what you should see, oh you must join us and our wives for a meal.....  Just what I needed - not!!  I could see it was just what the wives needed too - not!  So I declined firmly, tossed down my snack and drink and headed for my room.  Why is it OK for a woman to eat alone at lunchtime with a book or newspaper for company, but she looks a complete saddo in the evening doing the same thing??  So I mostly kept my nice meals out to lunchtimes.  My Birthday Lunch for Ian was at a beautiful winery but the day was bleak and the restaurant was nearly empty.  Not much chance of gazing at scenery or doing any people-watching.  The waitress thought I was a businesswoman presumably because I was dining alone and I explained.  The lovely lady gave me a hug and proceeded to put me on a big fuss, as did the chefs.  The sous chef sent out an extra course for me to try and the pastry chef didn't want to be outdone so he sent out a second dessert for me.  They made me feel so spoiled it more than outweighed the sense of loneliness and loss I was feeling celebrating Ian's birthday alone.  After that first night I had a sandwich with the telly for company at night.  But my meal with Waterbabe77 who lives in Auckland was lovely.  We had a great natter and divine food and surprisingly lots of common ground given the decades separating us.  It rounded off a busy/entertaining/happy/sad/restful week and reinforced for me that Ian's and my shared love of good food and travel and new experiences can continue.  I am very confident now that I will enjoy my trip to Canada and Eastern US.  I know there will be sad moments on that trip as well but I am certainly incapable of giving up on the things we enjoyed just because "we" is now only "me."

    You are right - I am tougher than I thought I would be.  I had to be tough when I got back from Auckland because the builders let me walk through the house yesterday.  They were finishing for the day so I got to poke about and have a weep wishing so much that Ian could have been at my side.  I know I am going to love living there.  I know the garden on a steep slope is going to be a mission - but it will probably be my saviour too.  Like you say gardens are good for the soul.  One of my new neighbours introduced herself and took me to meet her husband.  He tells me he believes my north-facing sloped garden would be perfect for growing grapes!!  Oh my goodness, don't tempt me, I do love a nice drop of wine

    So last night the last "First" for that trip was conquered - the first time I arrived home from a trip alone to an empty house with no-one to chat about how it went, what did you think about this and that........  And ironically no-one to get cross with.  For some reason I always felt very flat when we got home from a trip (usually because a checkup or another treatment was looming and so the "real world" was waiting to gatecrash our party).  I would be tired and grumpy and Ian would always wind me up by putting all the bags in the dining room along with shoes, jackets etc.  So I'd set to to tidy up when all I wanted was to sit down with a cuppa.  So that First was easily sorted - coat to coat cupboard, shoes into wardrobe and on went slippers, bag for one unpacked quickly - clean clothes into the wardrobe, washing to the laundry.  Done - in five minutes tops - and for some silly reason that felt so sad and so hard - what I would have given to be sighing and grinding my teeth at a messy dining room.....

    So back to Home, Hearth and Furbabies and mundane chores and everyday life alone.  Two friends called in this morning knowing I would be feeling pretty flat and now I have the afternoon to myself.  Despite the bitterly cool breeze, the day is sunny so I think I will take myself back outside and sit on our swingseat and watch the little native birds on the birdfeeders I have hanging in a big tree.  Like you say, it's the little things that can give you as much pleasure as the big things eh Emma?

    So lessons I have learned in the past week - holidaying alone is different but mostly enjoyable; coming home to an empty house is hard; but thank goodness for the simple pleasures like gardens and hungry birds!!!

    Lorraine

  • Just to say, Emma, that I thought about your "life's simple pleasures especially gardening" and instead of sitting on my swingseat feeling sad I got up, picked up my trowel and got busy dealing to weed seedlings that shouldn't even be sprouting now it's so much colder here

    And I remember I hadn't elaborated on the "first shower" comment.  For as long as I can remember I haven't been able to come to grips with shower controls in hotel bathrooms.  Don't know if it's my IQ, my blonde hair or what but I would pull out knobs, turn dials, dance the jig but NO WATER!  That was the one thing that I thought might beat me on my first trip alone.  Imagine the embarrassment of calling room service to turn on a shower.  And what a relief to find it was a simple control with no whizz bang/tricky manoeuvres hahaha.   Now I know I can do this stuff alone - well at that hotel anyway hahaha.

    Hope once you read this you are having another nice day and raiding your garden for some more treasures to bring inside and brighten your home.


  • Hi Jules

    As you can see I've ticked a few boxes in the last few days.  Life and travelling alone is very different but definitely do-able.  A bonus of course is that without my food-loving husband and his preference for expensive restaurants, my food bill was tiny - and hopefully next time I report in to Jenny Craig, the scales will reflect that hahaha.  But for Ian's birthday lunch I did pull out all the stops - I think he would be proud of my seven course winery lunch!!

    Lorraine

  • Hi Poppy

    Back from my first little holiday alone and it was OK - even really enjoyable at times.  It was bittersweet whenever I went past a place we had gone at Christmas last year - sailing on a ferry past our hotel room and balcony, eating in the wonderful atrium cafe of the Auckland Museum looking across at "our" table, walking past a tapas restaurant on the waterfront "seeing" us sitting together in the sun.  Lovely memories but I was glad to be wearing sunglasses to hide the tears that spilled over.  I am so grateful for the remission years and even the twenty months that cancer took to kill Ian.  He put up such a spirited fight and we had some lovely days amongst the awful ones.

    Today I sat down and wrote a list of Things To Do.  Like you say, sometimes you get something done on the list, sometimes not.  When I am focused at least I have the list to go to for inspiration on how to fill the day.

    Life is very, very different (and the house very, very quiet without my chatterbox husband) but I am glad I met him and I am glad we shared more than 37 years of friendship, courtship and wonderful marriage.  Yes... we'll get there in the end... some sort of peace and acceptance of what cannot be changed.

    Take care.

    Lorraine