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 was lovely to read your update and to hear that even though you are suffering the great loss of Ian,you are moving ahead with all those plans you had made. I should think with all that DIY/labouring your muscles will be growing stronger and its wonderful that you are managing to fill your days and rediscovering life. Wishing you continued enjoyment as you carry on celebrating Ian's memory he would be immensely proud.Jules

Reply
  • Hi Lorraine,

    It was lovely to read your update and to hear that even though you are suffering the great loss of Ian,you are moving ahead with all those plans you had made. I should think with all that DIY/labouring your muscles will be growing stronger and its wonderful that you are managing to fill your days and rediscovering life. Wishing you continued enjoyment as you carry on celebrating Ian's memory he would be immensely proud.Jules

Children
  • 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

  • Your other posts just hit my mail box. I am eating porridge and thinking the 7 courses at the winery lodge sounds great - did those courses come with food or was it just different wines - think the memory will live on for a long while (even if its hazy).  Your writing is bringing many smiles to my morning so thank you for setting me  up for the day (too early for me to raise a glass to you so sending hugs). Take care Jules

  • AAAAAAAH, porridge, Jenny Craig hardly ever gives me porridge and I adore it - boring old fart that I am!!

    Really - of course those were seven courses of food!!!  You'll give me a reputation as a lush hahaha.  They went like this:

      Amuse bouche - little morsel of yumminess on porcelain spoon

      Atlantic scallop (3) and filo-wrapped prawns (3) with dollops and swirls of sauce/garnish etc.

      Lamb main course (as ordered by me)

      Sample of snapper (fish) main course (thankfully small - starting to flag under the pressure at this point hahaha)

      A little palate refresher of raspberry sorbet

      Dessert as ordered (golden kumara - our NZ sweet potato - and chocolate beignets - little doughnut-style balls

        deepfried and rolled in sugar and serve on a "swish" of kumara sauce

      Another dessert (at the pastry chefs insistence) of deconstructed rhubarb tart)

    I did do the "wine matching" thing like Ian would have - but just half a glass with my entree and half a glass with my main.  I didn't order a dessert wine hahaha.

    As you can imagine I was "happiness-filled" and very grateful to the winery for putting me on such a fuss.

    Cat No4 (Misty) has just arrived home.  Everyone else has been looking expectantly at me for a meal but until the Roll Call is full, no-one (including me) eats round here.  I was ignored last night once the fire was roaring.  I had been hopeful that six nights without my company would have driven at least one of the Furbabies to a strong desire to sit on my lap.  I watched telly alone, went to bed alone and slept alone.  But to my shock I sat down on a garden seat to admire my weeding and Molly joined me on the seat AND THEN SAT AND THEN LAY UPSIDE DOWN ON MY LAP!!!  Wow!!  After four of us had called it a day at dusk, I was doing the rounds of the curtains shutting up the house.  I sat briefly on our bed to watch the little birds having their last drink of the day from my birdfeeders and crickey - Milly hopped onto the bed and stood on my lap.

    All four are now fed - Jenny is about to feed me - and the fire is on.  Will I get an official lap cuddle in front of the telly tonight????  It would truly make my day!!!

    Have a good day - that porridge will have set you up nicely I'm sure!!!


  • Oh my, the taste buds are now working overtime having read that menu. What a wonderful array of dishes and lovely to get a bit of spoiling; you so deserved that.  Aren't cats amazing one minute nowhere to be seen and the next giving you fur cuddles and attention.Hope you got your  'telly cuddle'. My sister in law has two of her own and about three that visit regularly 'to play with her boys!!'.  Strangely within a few weeks of my hubby's diagnosis one of our neightbours cats  began to visit regularly and now often pops in for a little while and nearly always makes a beeline for my husband first.

    My doctor recommended the porridge (in her and my quest to lower my cholesterol within six months or tablets loom!!) and do find it keeps me going on work days. Breakfast is early (before 7) and I do not get home till 2.30 so quite a long gap before lunch.   Strange I have never been into dessert wines - far too sweet!! but am partial to a drop of rose with a meal if we are entertaining. Hubby not enjoying alcohol so much (also painkillers limit intake) so he has shandy when he goes to the pub with his mate on Friday (when he is up to it) and occasionally a whiskey to round off the evening. We have never been 'at home' drinkers though for my hubby's 60th his workmates bought him 12 bottles of Jamesons (whisky) - only one bottle has been opened.

    Well good day yesterday (I took a three mile walk in the morning and visited a photographic exhibition (friend's daughter exhibiting) and the charity shops (picked up a couple of tops for the summer) and then had family over in the afternoon so spent 5 hrs in the garden chatting - bliss.  The men were watching tv - sport.

    Hope you have a peaceful week.  Take care, Jules