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.

  • Hi Sue

    So I have ticked the "first holiday alone" box and not lost the plot or my sanity   And a happy bonus was that I didn't have to stand beside "that photo" every night and lose it.  I did take a big 10x8 photo with me though - a very formal posed photo on formal night on a cruise ship.  Weirdly that photo didn't make me lose it.  The casual snapshot of me with Ian wrapped in my arms (trying unsuccessfully to protect him from what life and disease was trying to do to him) is the one that does me in - it did again tonight!!

    Ian used to wear his cap back to front when he was mowing the paddocks on his old banger of a three-wheeled mower.  If only I had a photo of that - it would be Ian's equivalent to Ray's "pilots" hat.

    I know Ian would be proud of me "seeing off" the nuisance tiddly businessmen who thought I needed their company, turning on the hotel shower without assistance, doing lots and lots of walking instead of blobbing my butt on a bus, even catching a taxi at 11pm after a show to get back to the hotel safely.

    Lots of jobs left on my list yet to finish the house, although the building company are talking late-October for a finish date so I daren't get too carried away or me and the pusses will be sleeping under a bridge for a month or three.  We can amaze ourselves with what we are capable of can't we?  I would put in a token effort whenever there was hard, physical work to be done, letting Ian take the lead because he loved hard, physical labour to keep him fit and trim.  Me, I'm more your swingseat and good book kind of labourer!!

    Any nibbles on the house yet??  Do you dare go looking for the next house (and risk falling in lust without having sold your own!!).

    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

  • Hi Lorraine,

    Hope you dont mind my hijacking your conversation!!

    Sounds like you are now a great conqueror of 'firsts' hurdles. You write so eloquently I almost felt I was there (never been to that part of the world) and Ian would be loving the way you dealt with the 'unwanted male attention' and am sure he 'accompanied'  you all the way through your trip.  Lovely that you were able to meet up with Waterbabe too. Virtual friend made real how wonderful.  Well if you are going to start a winery on those new sloping gardens you best start stocking up on some full bottles to keep you going. It must have been very emotional looking round your home to be but sounds like you really looking forward to getting in there and making it what you and Ian planned. Do you  have an idea when you will be 'in' so to speak.  New routines to be formed and like so many that 'empty house' syndrome when you come back from being away. Just as well the furbabes there for you to tell your stories to and no doubt soon rubbing themselves round your legs demanding a bit of love and attention.  Enjoy your weekend and it was good to read your update.

    Jules 

  • 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

  • I was just scrolling back to make sure I had acknowledged any messages to me in the last month or two.  It's hard to concentrate some days and I don't come on the site often because people's stories touch me deeply knowing how awful things could get for them yet.

    Anyway, as you will see above, I have had that first trip away - and lived to tell the tale hahaha.   I enjoyed myself some of the time, was OK some of the time and was only worried/scared once when I couldn't get a taxi at 11pm after a show at first and there was a loud domestic going on just down the street.  I took a deep breath, tried to look calm and tried again (and succeeded).

    Hope since your post on 9th May you have got to see your little grand-daughter again.  What a bonus - a little girl with all the frills and ribbons and bows and dollies.  Much more "girl fun" than a little boy with trucks and Leggo hahaha.

    I am looking after myself Lyn and I hope you are doing the same

  • 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

  • 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

  • I'm so pleased you have had a nice trip away and the new house is coming along and starting to feel like a home you could be happy in.  Is there lots of 'cat room' for the babes, will it be safe for them out doors?

    Granddaughter is just lush and buying lots of pink frillies is great.  Can't get down to see her as often as I would like not only because of chemo,  hospital appointments and  that sort of thing but also because of the expense we have had recently! In the past month I have had my car break a spring (I must lose some weight!) and shred a tyre, the TV Digibox cease to work, the toaster break down, Hubby's exhaust on car need replacing, the chimney need sweeping twice due to birds nesting on/in it, the dining room need decorating due to soot/smoke everywhere and the whole house having to be re-wired due to 50 year old wiring being condemned!  The costs have been horrendous!!

    Still mustn't grumble eh...!

    Keep well.

    Love lyn.