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I hoped I would never post this discussion

elkay
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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.

  • Offline in reply to elkay

    Hi Lorraine,

    I am really pleased that you are being so positive and booking holidays as well as getting your house ready to sell and then your move.  So many changes in such a short space of time.  For me it's been nine and a half months now and I think I have finally accepted what has happened.  Still have the odd bout of tears and think why did this have to happen to us the way you do but just getting on as best I can.  I work full time five days a week and then have my grandson from Saturday afternoon to Sunday evening so am kept busy enough daytimes.  As you say the night times are the times I am on my own.  I tend to watch tv, read or get on the internet.  I think you are so good for going on your diet and exercise programme.  That's something I really need to do when I can set my mind to it!  Still have a list of things that need to be done, sometimes manage to do one or two and then I come to a standstill again.  Guess, I will get there in the end.

    Wishing you all the very best for your new future and hope you really enjoy these holidays that you have booked.  You are so brave, I know that is not something I can even consider at the moment.  The intrepid explorer!  Sending you and your little bundles of fluff all a hug.

    Take care,

    Poppy

  • Offline in reply to elkay

    Hi Torchbearer

    I know you must have black moments but i am glad to hear you are managing so well.The travelling sounds like a great idea.There is so much out there to see .He would be very proud of you.As a couple you were always a lesson in how to get as much from life as you could and clearly you are carrying on in the same spirit.

    It must be strange adjusting the new patterns of your life.I hope that you find what you are looking for .

    emma

  • Offline in reply to gioux

    Hiya Gioux,


    How's it going? Blo*dy  horrible at this sh*t party without them isn't it?.. I have some  reasonable times when I am busy, busy, busy - but then when you slow  down/ stop it hits you like hitting a brick wall.  Are you managing to  do anything? I have been getting the house ready for sale massive  amounts of gardening was going well till I realised the rhubarb was  ready to be picked/ eaten and he wasn't here. Oh boy did I howl.  Clearing the garage out helped a lot - such hard work -  I just got crabby  not upset.. It's like a rollercoaster isn't it?


    Bye for now

    luv sue ps

  • Offline in reply to grumpy

    Thank you Emma.  Torchbearer indeed!!  Torchbearer for a Tissue Company at the moment I think.  Seven weeks tonight since I lost the love of my life.  As the hospice warned, the two month anniversary is hard - I can see that coming.  I am crying more this week than I did for the first few weeks, just crying though.  The "animal howling" was reserved for the first week or two!!!!

    It is indeed very strange to adjust to this new life.  Daytime's not so bad - lots to do getting this house ship-shape to list for sale, choosing appliances, finishes etc. for the new house, booking travel we both wanted to do, researching what sights to see, seeing the small band of friends who stuck by me and weren't too uncomfortable about my husband having terminal cancer, let alone doing the unthinkable and dying.  And yes, I hope too that I find what I am looking for - because I don't actually know at the moment.  I keep having second thoughts about the new-build because it is tying up a lot of money and I scold myself for wanting a lovely view and a big garden in a sort of village beside a small city.  If I could get over myself and forgive the people who shunned Ian and me when his cancer came came, and if I could be content with a cruddy little pensioner flat, I would have the comfort of more money to fall back on if times are tough.  Ian and I always talked stuff like that through.  He wanted me to have the new house and the new life.  And when I think about it, it's not irreversible.  If it doesn't feel right, I can sell up and keep searching for the "right new life." 

    But yes, life is strange now.  Pleasant some days, unhappy other days, but precious every day!!!

    Lorraine

  • Offline

    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

  • Offline in reply to KazzaKaz

    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

  • Offline in reply to elkay

    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

  • Offline in reply to elkay

    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

  • Offline in reply to POPPYPETAL

    Hi Poppy

    No wish to crash this thread, its so not the place but thanks for asking am OK - not been great but getting there. You know how it is...xxx

  • Offline in reply to VikkiG

    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


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