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
  • So tomorrow night it's six weeks since I lost my darling Ian.  What a different life it is, alone and without any responsibility or structure.  My mind is still "mush" and my concentration is pathetic.  I flit like a butterfly from one task to another, without actually completing many.  I am tidying up the house with the help of a DIY friend and his wife.  It's going on the market in a few weeks time and the house Ian and I planned together is now underway 30 miles away.  It is really weird to, as I say, have no responsibility and no routine.  I can get up when I want (within reason that is hahaha).  I can eat when I want.  I can just jump in the car and go somewhere - without packing change of clothes, spare drugs, sickbags.... you name it.  I can park the car far from where I want to go and just walk for the love of it - no more parking right outside the door because Ian hasn't the energy to shuffle far.  I've sort of got my life back - but there's just such a big hole in my life that it's not really mine if you know what I mean.  I miss Ian a lot.  I stopped wailing a couple of weeks or so ago but I still cry at the drop of a hat if I catch sight of a photo on the wall, or the catfeeder goes off with Ian's message for the pusses.  I'm glad I've got our four cats - otherwise I'd have little reason to talk.  The weather has been OK lately so we all got outside to door some of the mountain of outdoor chores that need doing.  They hoon about while I plod on, doing my jobs.  I have build 58 metres of garden path - hammering in pegs and nailing on 4x1 wooden edging.  I am in the process now of barrowing shingle along this path.  When I get sick of that there's always the lawns to mow or pruning to do or weeding.  I am busy, really busy.  I joined Jenny Craig the week following Ian's death now that I could concentrate on being selfish enough to diet and exercise and think just about ME.  I am steadily losing weight and feeling better for it.  I am definitely eating better too - shedloads of vegetables.  Woman cannot survive on buttered toast alone, like I was doing after Ian died.  I am adjusting to life alone.  I am not lonely.  I make an effort to see friends most days.  I am almost always alone in the evenings but that's OK.  I like a bit of telly or a good book - and I have even rediscovered my joy of reading.  I have discovered that I am not afraid of living alone - I was sure I would be.  And I am taking baby-steps towards continuing our joy of travel.  I am having six days away to celebrate Ian's 62nd birthday next month.  And in the past two days I have done what Ian instructed me to do - continue cruising.  I have booked a Christmas cruise around New Zealand and across to Australia so I won't be alone in the new house at such an emotional time of the year.  Once I did that online I thought I had better tick the other box we were going to tick if Ian had been well enough last October - a Falls Colour cruise along the East Coast of Canada & the US.  Six months to the day after Ian's death I will fly to Vancouver and then I'll take a four day train trip across Canada to Quebec where I will join a cruise ship for 20days cruising.  I will celebrate my 58th birthday at Newport, Rhode Island and sail into the Big Apple the following day.  At the end of the cruise, back in Quebec, I have booked a train to Toronto to do a side trip to Niagara Falls, then I'll fly back to NZ via Vancouver.  I am scared/daunted/exhilerated/excited all at once at my bravery/stupidity/bouncebackability!!!  Thank you Ian for suggesting the first cruise back in 2008 - we both recognised it was something a woman alone could do safely and I know I am going to enjoy it immensely (even if there's quite a few private tears along the way). 

    I think I am doing pretty well.  I certainly didn't expect to be doing this well, this soon.  But then again we knew Ian's cancer was terminal for seven years.  We grieved together along the way.  Ian's death was not sudden, not really.  It was a shock, yet it was an expected, anticipated shock that we both knew was coming.  Like I say, I miss him, I miss him so very, very much.  But I am glad I was married to Ian.  I still believe that 36 years to a wonderful man is a million times better than 60 years, let alone 75 years to a scoundrel.  Everything that I am today is down to the life we lived together and the experiences we shared - good (lovely homes, successful business, lots of travel) and bad (cancer). 

    I'm getting there.  I hope others in the same boat as me are too.  I don't believe we have much choice - we are the torch bearers for our loved ones.  They loved living.  We just have to adjust and find a way to continue to do so too.

    Lorraine

  • Hi Lorraine

    It's been a long time since I was on this site. Incredibly remiss of me I know, but I've not forgotten you and Poppy and others - but I have found it too damn hard since Chris died, nearly 5 months ago. Too big a reminder of everything. But I've been thinking about you. And I logged on tonight and saw that you've lost your Ian. I am so incredibly sad. And so so sorry that this happened to you, and to him, and to the two of you. Why oh why does it happen to these good people who do no harm to the world - that hurts. I know all too well what you are going though, and its tough. I've not read all the messages and threads but I hope you're doing as well as you can in the circumstances. If you're anything like me (and I think you are in many ways), then you're doing well in so many ways and surviving but the loss is huge and NOT made easier by being expected. A whole new world of pain and sadness I know. I'm sorry I've not been on here to support as I would have liked, but I'm back here now, wishing you every strength and sending you love from Clogland

    V.

    x

  • Vikki - I of all people understand why you haven't been on the site much.  Same reason for me.  Too hard to take on other people's tough news - sometimes even harder to read their good news!! 

    I know how busy you have been - because I am too.  And yes, I think you and I are quite alike - decades apart in age - but pretty similar in outlook on life and coping skills!!!  The hospice nurses told me after Ian had died that I faced two huge milestones - the two month anniversary and the five month anniversary.  Weird spacings eh?  I would have thought maybe six months and one year would be very hard but apparently not....  It will be two months since I lost my darling Ian this Wednesday.  How can two months just flit by.  How can it be that it is two months since I touched his live, breathing body and stroked his face?? 

    But yes, I am doing well.  I am busy tidying up the house to put it on the market and our new home thirty miles away is now well and truly underway.  The concrete floor was poured on Friday.  Ian had a lot of input in the planning of this home and so it is still "our" project.  "Tidying up the current house" is a bit of an understatement.  The DIY husband of my cleaning lady has stopped and painted the three big built-in cupboards we never finished.  The main bathroom was Ian's last DIY project and needed finishing.  I had a builder in to do that and last weekend I put three coats of paint on the walls.  The tiler comes tomorrow.  It is going to look great and I will be sad that Ian won't get to see it.  The real estate agent suggested I finish the bathroom and put in the planned garden paths before listing.  A tradesman wanted an arm and leg to do concrete paths so with Ian's guidance four months or so ago I made a start on making wooden 4x1" edgings and in the last month I have been barrowing shingle into the 58 metres of pathway.  This on top of cleaning out cupboards to sort "keepers" and donations to the Hospice Charity Shop, keeping the garden and lawns tidy, making visits to the house site and visiting the kitchen designer - oh, and rejoining Jenny Craig after an absence of 18 years to try and lose some Excess Lorraine.  It was impossible for those last awful months to take the Me Time to lose weight and exercise.  Now I have all the Me Time in the world - and would rather not have it   There's lots to fill the daylight hours but the evenings are tough.  As I draw the curtains every night I pass a photo of Ian and I last June just days before he was deemed to be untreatable and transferred to the hospice.  We are both laughing and hugging each other.  Night after night that photo "does me in."  We look so happy and carefree and hopeful..... 

    But I am alive and I am well (as far as I know anyway).  I had a fantastic marriage with a lovely man for 36yrs 52 days.  I have memories coming out my ears.  I have thousands of photos, especially since Ian went into remission in June 2006.  I am alone for most of the time - although I am being proactive about seeking out company, calling in on people for a chat, forcing myself to eat in cafes alone, etc.  But there's lots of "alone" time.  I am braver in the house at night than I ever thought possible.  And just as "we" were content in the evening with just our own company, so I am reasonably content most nights with just me and the four cats. 

    I thank my lucky stars Ian and I could talk so openly of the future for both of us.  I know what he wanted for me because he told me.  He was adamant he wanted me to keep ticking the travelling box and all our years of travelling together has given me the confidence to do just that.  It's Ian's 62nd birthday on 4th June and I am taking my first baby steps to holidaying alone by flying to Auckland to spend the week in a nice hotel up there and to have lunch in an upmarket winery restaurant that we had on our "To Do" list.  We had hoped Ian would go into remission again last year and we wanted do a Canada/US Falls Colour cruise for my birthday.  But it wasn't to be "together" ...... I have done all my research and booked a rail trip across Canada to Quebec and then 20 days of cruising taking in the stunning autumn colours to New York and back.  I will celebrate my first "alone birthday" in Newport, Rhode Island.  Christmas in an empty Ian-less house just can't be contemplated so I have booked a cruise down the length of NZ, over to Australia.  All these trips will be nice, I know, but tough too.  But life is tough sometimes anyway.  And death (or more particularly dying) is even tougher for our loved ones.  I love life and all it has to offer - it's just harder some days than others to make the adjustment to a new kind of life.  I sometimes think I am coping better than some on this site because Ian and I had seven and a quarter years to grieve together for what we were both going to lose.  Or maybe I am just made of tougher stuff than I thought.

    I saw your posting on your own Discussion and I so relate to all the red tape cr*p we have to contend with.  Today the buyer is picking up our old workshop utility.  When I go to do the "change of ownership" there is going to be a drama because Ian is the primary registered owner and I can't use his name and licence number because a government department wrote to me ten days after his death cancelling his driver's licence.  Those sorts of letters are tough aren't they?  The first letter that came addressed to "The Estate of.." made me cry.  Signing a Sale & Purchase Agreement for the sale of our workshop building last week involved me signing first as me and secondly as "Ian's Estate's Executor."  Another quick scuttle out to the car for a quiet weep.  Don't know which is worse - the cold, impersonal approach of businesses and government departments though, or the insincere condolences given by total strangers over the phone or counter.....?

    So we keep on, keeping on eh?  One day surviving will turn into thriving day after day.  That kind of makes me sad too because I would rather not thrive without Ian beside me, but I have absolutely no choice do I, and I know he wanted me to be happy and to thrive and live and enjoy my life on his behalf.

    Thanks for taking the energy and emotion and empathy to say hello Vikki.  Thank you for your strength and love a la Clogland!!

    Lorraine


  • 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

  • Thank you so much for your company on Thursday night Waterbabe.  We didn't seem to run out of things to talk about did we?  And I luckily got to sleep in the next morning.  I hope you didn't have too much trouble getting out of bed and off to work by 8am.   My flight home was smooth and I went straight to the new house to admire its trusses.  The last of the builders was about to finish for the day but let me have a wander around the "inside" of the house.  What a lovely home Ian is missing out on Ian.  The views framed by the "windows" are to die for and the sun was flooding into the kitchen, living room and "our" bedroom.  A new neighbour made herself known to me (thankfully after I had dried the tears that overtook me during my "tour") and weirdly when I got back to my current home, it didn't feel as much like home as the other house did.  I guess in my mind I am starting to make the transition from one to the other - and from one life to another....

    Take care of yourself

    Lorraine

Reply
  • Thank you so much for your company on Thursday night Waterbabe.  We didn't seem to run out of things to talk about did we?  And I luckily got to sleep in the next morning.  I hope you didn't have too much trouble getting out of bed and off to work by 8am.   My flight home was smooth and I went straight to the new house to admire its trusses.  The last of the builders was about to finish for the day but let me have a wander around the "inside" of the house.  What a lovely home Ian is missing out on Ian.  The views framed by the "windows" are to die for and the sun was flooding into the kitchen, living room and "our" bedroom.  A new neighbour made herself known to me (thankfully after I had dried the tears that overtook me during my "tour") and weirdly when I got back to my current home, it didn't feel as much like home as the other house did.  I guess in my mind I am starting to make the transition from one to the other - and from one life to another....

    Take care of yourself

    Lorraine

Children
  • Hey Lorraine,

    I had such a good time and you coped so well with the few wobbly/teary moments that came up. You were such good company and the food was delicious. I haven't stopped raving about the dessert. (For the foodies like Jules - hollow chocolate ball- like an hollow easter egg except round- with gold leaf on top and choc mousse and pears within. To access mousse, I had to pour hot choc sauce on ball until imploded).

    If you're flying out from Auckland when you go cruising, you'd be welcome to stay with us or just catch a meal or something. I really enjoyed spending time with you and I hope many more online friend meet ups are in your future as well.

    xx waterbabe

  • Waterbabe, it was great that you could meet up with Lorraine. Thanks for the descriptive message about the dessert. Practically drooling now having just had my 'healthy' lunch and that certainly sounded gorgeously unhealthy.  Must have been  nice to put a face to a virtual buddy from the forum.  Hope you doing okay.  Jules