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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 Elkay

    Do hope you managed some decent sleep and that the new day will not be too challenging for you and Ian. It is a remarkable journey that you are on and your stamina and grit (and an amazing sense of humour in the hardest of situations) is truly emotional to read.  The deep love that comes through in your posts is truly wonderful and I cant begin to imagine how hard it is to keep posting when you must be feeling shattered. It is inspirational and know there are many on this forum who wonder how they will find the inner strength when they are faced with the hardest of battles. Life is  so 'not fair' when such good people are suffering. Sending you virtual hugs and a more peaceful day. Jules

  • Offline in reply to elkay

    Dear Lorraine,

    When I read day three of 3 bad days, all I could think was "sh*ttidy sh*t sh*t". Can't say anything to make it better but think you're coping blimmin marvellously and getting your ducks in a row is a good thing to do.

    Hope Sunday is a day of rest from all things sh*t for you (but hope the sh*t keeps flowing for Ian - no constipation again for him).

    x waterbabe

  • Offline in reply to elkay

    Hi Lorr,

    I don't even know what we should hope for. Would it be better now to have a gentle slide, a sudden fall or an amazing, though temporary, recovery? Any more good days have got to be a positive thing right now, but how many of these ups and downs can even the sturdiest realist amongst us (and I think that means you) take?

    My experience is that it helps a little to know that other people are thinking about your pain. I am.

    The advanced directive stuff is really gutting, I know. Let's not go into the awesome conflicts it brings to any of us. I have no doubt that when/if Ian cannot speak for himself he will have a very assertive advocate.I also know that, however painful it may or not be, to you, you will be upfront about Ian's decisions and not override them with your own.

    You've talked a lot about your journey and you've never pretended that it won't have an end. Maybe you're right and this is the final act. I'm so sorry.

    You've been an inspiration to Janet and I and we shall be willing you on with all our strength to see through this stage of Ian's ilness whether it be the final part or just another dip.

    All our best wishes

    Russ and Jan

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    Such a lot of water under the bridge since mid-February when I last posted.  The days and weeks have just combined into one big swirling blob of nothingness...  I was trying to think of an appropriate word - but we just seem to have day after day of just surviving, no more happy times out in the garden with the kittens, very few laughs, and for me hours and hours of chores and hard physical work (for a basically bone-lazy late-middle-aged woman), fetching, carrying, preparing little morsels, chilling gallons of water to try to keep the bone/calcium at bay, dishing out pills and now in the last few days pushing a wheelchair back and forth through the house, running backwards and forwards from the lounge to the loo with a urinal/pisspot, struggling to load the huge wheelchair into the boot of the car, struggling to get it out again....  The physical stuff attached to caring for a loved one at home is endless.  Please don't get me wrong.  I do love Ian still.  But this job is just so very, very hard.  I hardly ever cry now.  I just plod through the day.

    Yesterday I was walking back up toward the house on our crisp, crunchy lawn (we are having a 70 year drought in New Zealand) and one of the kittens popped out of the srhubs.  I lay down on the crunchy lawn in the shade of a tree and two more came to join us.  It felt so deliciously selfish to lie there in the shade doing absolutely nothing for five minutes.  At the carers' course I went to at hospice last year I met a lady of 70+ who said the course was her first two hours off in months.  I did wonder if she was telling porkies.  I now know exactly what she meant - and her so much older than me!!! 

    We have been backward and forward to the hospice several times since I last posted.  Ian is now on a permanent syringe driver delivering anti-nausea and pain-relief very efficiently although most days he needs a break-through tablet of strong pain-relief.  We had a terrifying time at 3am recently when he started vomitting towards me in the bed, though thankfully he had a plastic vomit bag tucked beside his pillow which caught all the vile stuff.  There is a supposedly 24hr public nurse system we can call on.  Call on yes, attend quickly - no!!  We were lucky that that night the nurse who covers approx 200-300sq miles alone from 11pm to 7am had just been to our town and was only ten minutes away on her drive back to her base 30 miles away.  The next night Ian started vomitting again at 9.30pm and when I requested the nurse come to give him another jab in the leg I was told she couldn't come to our town and get back to base within her shift so the next shift would come over.  When the nurse knocked on the door at 12.10am I met her zombie-style at the door and could barely speak with exhaustion.  Welcome to public-health nursing New Zealand-style. 

    So another eight day stay at hospice resulted but the tweaking of the drugs has worked well since.  Thank goodness for our black humour - during our stay at hospice that week most of the occupants died over the weekend.  We kept our room's door well and truly shut and the Grim Reaper passed us by.  Although I thought he had me on his list at one point - with no patients to give supper too, I was actually offered a plate of cakes one night.  I ended up with massive indigestion and did wonder if I was having a heart attack and the Grim Reaper had the wrong half of us on his list!!

    There is a constant battle now with blood/calcium.  As the cancer scuffs off calcium from Ian's spine it accumulates in his blood, causing (for him) jumbled talk, constipation and exhaustion.  This is being monitored by the hospice by blood tests and by eye-balling the patient.  But he doesn't help by being the consumate host when the hospice nurse comes to visit, sitting up, chatting happily.  So I do the "he's actually not very well, he's falling asleep constantly, he's jumbling his words, jumbling people's names...." routine and I could see the nurse didn't believe me.  She did believe the 3.35 reading on the blood result the next day though - not too far off the point where Ian would lapse into an irreversible coma.  So off to the hospice again last Friday for Pamidronate by IV.  Ian's getting nearly four weeks out of each IV - which is wonderful because it is extending his life.  It is expected that it will be less and less effective and the blood/calcium hasn't come down as much this time as the last two times so it's a work in progress.  A newer, better drug is available - Zometa - but it isn't funded by the New Zealand Government and hospice aren't comfortable with charging us the $500.  In an ideal world it would be free - it isn't - so we are happy to pay.  Ironic isn't it - I am finding the job of caring for Ian now a huge one but I am still advocating for him, still rattling cages, still writing out cheques for drugs if it will help.... 

    Tonight was the first night in many nights that I had some time to myself to update this.  I got that "time off" in the grottiest way.  To combat three days' constipation I had the idea of buying Ian dark Stout-type beer.  Ever since his colon operation beer has given him diaorrhea.  So Lorraine's cure for constipation - instead of the tablets and the foul tasting goo - is beer.  So one 330ml bottle later (while I am sound asleep in front of the TV at 8pm after another hot, busy day) Ian wheels himself to the loo and just makes it before a good dose of diaorrhea.  Then I am woken to the sound of him calling for me, wanting me to wheel him 20ft from the bathroom door to the bed and undress him.  I wonder if the public health nurse who comes tomorrow to refill the driver will reward me or scold me??  So while Ian is in bed sleeping off the diaorrhea I have some time to myself.  Ironic eh??

    So we keep on keeping on.  Our "fun trips away from home" now consist of trips to the hospice.  Any suggestions of little drives out to nearby cafes are refused.  Our new house will be started soon, once the plans have been approved by the Council.  I had looked forward to us travelling the 30mls together to potter around the site and nod approvingly or tut-tut....  I think I'll be doing those "inspections" on my own if I can get friends to Ian-sit for me and it will be a miracle if we move into that new house together in four months time.  Our hospice social worker rang today to ask how I was doing.  She caught me as I was scrolling through our many "dining out/yummy meals" photos on the computer because I am going to have a dozen or so printed to put up in the new kitchen to remind me of happy times.  I had just got to a photo of Ian polishing off haggis, tatties and neeps in a snowy Edinburgh in 2009 and I was bawling my eyes out for the first time in weeks.  The weirdest things can find the crack in the armour!!  She has suggested now is the time to implement my plan to increase my home help's days/hours.  It made so much sense and I had even been the one to tell her that's what I would do when things got too much - I just needed reminding.  Maybe with a bit more help - and our crazy Irish home help's wonderful, zany sense of fun - I won't feel so overwhelmed soon.  I hope so......

    Lorraine

  • Offline in reply to elkay

    Hi Lorraine, don't know what time it is there but it's 9.20am here and I'm at work, supposedly doing some work on a spreadsheet but decided to drop in to see you instead, any excuse.  I'm sorry you're having such a rough time, I can hear the exhaustion coming through in your e-mail.  Hold on in there girl you can do it, we're all routing for you!  I know what you mean about looking at photos and bawling over happier times, I often wonder what it will be like to go through photos etc 'afterwards' will it be a comfort or a torture - well I'm sure I will find out one day.  At present everything is plodding along with hubby and me.  Chemo every other week and our lives run around that.  He had an extra couple of weeks off of his chemo over Christmas when his Hickman line blocked up with a blood clot and he had to have it replaced, he was so much like his old self it was amazing! 

    We are expecting another grandchild in April and looking forward to that event.  I don't look too far forward these days, couldn't book  a holiday or anything further than a couple of weeks ahead, just cant do it - I'm a pessimist I just know something would go wrong.  Hubby had a scan a fortnight ago and we're waiting for the results, I try to put it out of my mind and concentrate on other things.  He had an argument with the nurse at the hospital the week after the scan because we have to wait a month for the results of the scan due to the way his appointments fall and he tried to get across to her that it is cruel to make people wait this long for the results but I don't think she understood!

    Well must get on, work to do and bills to pay!  Hang on in there and take comfort from all your friends out here thinking about you.

    XX

    Lyn

  • Offline in reply to elkay

    Hi Lorraine

    Woah; don't even know if you will manage to find the time to read this but am just going to send you virtual hugs and flowers. Your days are full of poop in more ways than one and the struggles are even harder and yet your love for Ian and your humour (black or white) still bounces out of the computer. You sitting on your hard lawn surrounded by the fluffy ones was such a serene moment in an otherwise hectic life that felt there should have been a photo opportunity but then that would have spoilt the moment. Please don't use that selfish word again. It could never be applied to you. I cant even begin to imagine how you managed to cope with these difficult, exhausting days following on from Ian's long cancer battle (your inner strength and bouncebackability ~(think I made this word up) is absolutely astounding to me and no doubt to all those around you. I think you are never in the same place long enough for that Grim Reaper to catch you but on a serious note, take that increased help as soon as possible. You need to have a bit of recuperation time to yourself for the times ahead (even if it is just a glass of something in the next room whilst someone else watches over Ian). Your own sanity depends on it. Often think on how you are doing and guess now I know. Wish I could hold your hand and make you the British answer to all ills, a cup of tea. Take care and hope the drug treatments keep helping Ian for as long as possible. Best wishes Jules

  • Offline in reply to elkay

    Bless you Lorraine!!!

    Just want to pop in to say I hope you get that extra help soon and keep snatching five minutes serenity when you can!! I am amazed at how you and others just keep going. Isn't it funny how when you think you just can't do anymore and have nothing left you still seem to find something in the reserve tank you never knew was there?? I guess the truth is that you just  keep putting one foot infront of the other Lorraine - what else can you do!!!

    I don't know what would become of us without a sense of humour and happier times to hold on too!!! I do hope you get that extra help very soon!!

    Big virtual flowers hugs extra help and free drugs!!! ( the helpful kind that is!!!!)

    Ann

  • Offline in reply to elkay

    Ah Lorraine, take more of those moments with the kittens. I reckon the beer was a good thing - it got those bowels moving didn't it?! Look after yourself and definitely increase that home help.

    Thinking of you

    x waterbabe

  • Offline in reply to elkay

    Hi Lorraine

    It all sounds so horribly familiar. Hope you take advantage of those extra home help hours , you dont even realise how exhausted you are and when youre that tired you cant think straight ( I cant anyway)

    Thinking of you

    Geri

    xxx

  • Offline in reply to elkay

    Hi Elkay,   Thank you for finding the time to post and updating us all, we've all been wondering and thinking about you and Ian. Your're both in such a hard place at the moment, so I'm glad your will be getting some more practical help.  Being physicaly exhausted (I recall the pills/sickness/wheelchair/hosp) does not leave much to deal with the emotional side, can only begin to imagine how you are  feeling.  Hopefully extra help will enable more time to be by Ian's side, even if talking is difficult your presence must be such a support  -  keep strong.

    Hope you're feeling a little better and that the new pills have helped by the time you read this. Take care, gardenlady.

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