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.

  • Kristina and Vikki

    I am leaving this computer keyboard right this minute and going down to the bedroom where Ian is sleeping at 10am in the morning.  I am going to throw back the covers and leap into bed and throw my arms around that man and cuddle him tight.  I only hope he isn't dreaming and thinks I am a burgler or something

    Thank you for your lovely words, both of you.  You are "walking the walk" - you are so entitled to "talk the talk."

    Lorraine

  • Hi Lorraine

    I thought I was the only one who got shirty and of course you have any right too no when my father died suddenly part of my faith went with him.  I used to question why didn't he take one of my father's elder brothers instead of him what harm did he do - none just was a heavy smoker and an occasional drinker.  He died of COPD in the end no warning given that night so when things don't go right guess who I shout out - my father.

    In relation to my father-in-law his GP called out at the weekend and diagnosed a stomach ulcer how the hell could an ordinary GP detect that by feeling a person's stomach.  He was then told on Wednesday the cancer has now spread to his lungs and his stomach.  As I have said before his wife isn't one for going into detail.

    He was told it cannot be cured but they are starting him on a course of chemo tablets for two weeks but again I don't know why.  His wife is very worried now about the side effects these tablets can cause only time will tell.  It is my husband I feel for in all this he was always under the impression his father was going to make a full recovery but at the back of my mind I always had a fear he was going to get worse and he has.

    I was truly sorry to hear about Ian Lorraine and there is nothing of use I can say to you.  Please don't bottle everything up inside talk to someone.

    There is one person I will be very shirty with and that is my sister-in-law.  She arranged to meet her sick father at a shopping centre at the start of October and being him he went along.  His wife had to make a journey to the hospital to collect the tablets yesterday and she didn't have the gall to offer her mother a lift.

    She may think the odd phone call suffices in my eyes it doesn't.  Well sure when it is too late she will arrive at the house with the crocodile tears etc it will not wash with me.  My granny used a have a saying "Let me smell the roses when I still can".  I think it means don't be bringing me flowers when I am not here.

    You look after yourself Lorraine and take care

    Mickied

  • Hi Lorraine

    Just thinking about you and Ian today.  How is he and how are you coping yourself.

    Mickied

  • Hi Lorraine,

    I guess you have been giving Ian a very long cuddle.  No posting here for a while!

    Hello to all the others on this thread too.  It's a hard place to be but we have to help each other.

    I haven't posted here in a while; my husband has been very tired, with little appetite.  Chemo was knocked back today because of low white blood cell count so once again I have the excitement of administering injections over 5 days.  But the prospect of delaying chemo is not unpleasant (maybe we 'll manage to get some fun in this weekend!) and my husband was asking afterwards what he could do himself to boost the WBC.  I said eat.  Not because I know it would work but because I think he should.

    I hope Ian keeps enjoying the food you make him, and the laughs you share.

    Expat xx

  • Hi lorraine

    I was wondering how you guys are doing. I hope you are still tucked up in bed.I love bed -it is like being in your own little bubble for a while

    best wishes

    emma

  • Hi you guys

    Thank you for looking out for me.  It's been a tough fortnight.  Slowing getting tougher and tougher.  Ian was having so much of what he called "discomfort" but which he was rating on the pain score as 3 to 6 that he just seemed to be slipping away.  He wasn't getting out of bed till 11am or more, hobbling down the hallway to the lounge to sit and snooze for hours, then hobbling back to bed exhausted at 10pm.  Thankfully the decision was made to do ten radiation sessions to reduce the size of the abdominal "mass" which got to 14x10cm despite all the drugs.  The fact that the system let that mass get so big before doing something about it makes me furious - and I got lectured about my anger issues by the hospice nurse.  Counselling was suggested - and declined!!  Our social worker has been with us through the hospital and now the hospice for six of the seven years' fight and she said I have every reason to be angry - opportunities have been lost and the disease has progressed to a dangerous point because of mistakes and ommissions.  How sad is it that I researched "cancer in para-aortic lymph nodes" many months ago and knew a mass would put pressure on the adjacent kidney - and yet the oncologist was declaring two weeks ago that he'd never heard of that happening.  But to his credit he got Ian urgent radiation therapy which starts with a tattoo session on Monday and will start in earnest on Thursday we understand.  The radiation oncologist was a lovely, open, forthcoming, helpful man who answered every question willingly and gently reminded us that he couldn't offer a cure.  IF I THOUGHT FOR ONE MOMENT THAT RADIATION COULD HAVE CURED IAN I WOULD GO ABSOLUTELY BALLISTIC.  I asked the oncologist eight or ten months ago if the "mass" which was at that time only about 5cm square could be dealt to by radiation and he absolutely, categorically refused.  Now when it's huge, it's become a possibility   The radiation oncologist says he can drastically reduce the "mass" but that it will rear its ugly head again somewhere else - we understand that - but this is buying Ian more time and that time is precious.  And since I "rattled more cages" yesterday we have increased pain relief for Ian who has bounced back today, happier, more alert, tidying up in the kitchen, walking rather than shuffling......  The roller coaster ride continues..............................

    So is your Bonfire Night the same as ours Grumpy?  Is Monday 5th November your 1st day of Rat Relief??  I'll be thinking of you as I play "join the dots" with Ian's radiation tattooes

    Sorry to hear about the wonky cell count Expat.  Well done you for administering jabs - I have done things in the past seven year journey that I never thought I'd have the stomach to do but jabs won't ever appear on my CV.  I'd have to put my head between my knees and breathe deeply to administer a jab - and I don't think Ian would be confident about that technique

    Our roast lamb lunch is almost ready - the wonderful smell of lamb and rosemary is wafting across my kitchen and under my nose.  Better get the veg sorted.  What a shame we haven't got a sunny day - with Ian happier and more alert, it feels like it should be sunny to celebrate

    All the best you guys

  • Hi Elkay, its kazakaz here, I just wanted you to know that I am thinking about you both, as you know I have already lost my soul mate back in May, just treasure every second that you have together, try not to dwell on the future there will be plenty of time for that later, I can't tell you how to cope or what to do, but you know it is not going to be easy, it will be the worst time of your life, I know mine was and is still very very raw, but somehow, and I dont know how, we cope and carry on. My heart goes out to you, it really does and I just want you to know and remeber that I am thinking about you both and sending you a massive hug.

    Love Kaz

  • Kaz - thankyou!! I just passed the computer on my way to the lounge.  I've made a pot of coffee and cut us a couple of slices each of sultana cake - lovely jubbly!!  You know exactly where I am at the moment and your concern and hug are very much appreciated.  It's lovely to hear you are "getting there" after the tough time you had when you lost your lovely man.

    Lorraine

  • Not long back from the regional hospital.  Ian had the CT/tattoo session and three interviews with nursing staff - all writing down the answers to the same questions - to no doubt be passed to a paper-shuffler to collate!!!!  I was allowed into the CT room to see how Ian was set up which I had never been allowed to do in the normal CT Department so I found it really helpful, rather than trying to imagine the setup.  But I had a "What the.......?????" moment when the nurses asked Ian where was the pain/problem.  I couldn't believe it would be down to the patient to point out where his tumor or mass was.  So I piped up in My Best Rattling Cages/Being a Loud and Insistent Advocate voice and told them "there is a huge mass in the para-aortic lymph nodes."  I saw them all exchange looks - obviously thinking "We've got a right one here" and the radiologist scuttled off to read Ian's file.  She came back and I heard her mention the peritoneal cavity just as I was being ushered from the room so I knew they had the right man/body part.  After the CT and tattoos were done we were invited into a scruffy little side room to ask any questions and I made a point of telling the nurse just how unnerving that "location" question had been - how much it had undermined my confidence that this department, at least, would be able to help Ian without mixups/omissions/botch-ups.  They need to know how such a question is interpreted by the patient or stroppy carer....  Maybe their reaction will just be to ban the carers in the future!!!! 

    We were hopeful we'd be told almost immediately whether the radiation was successful or not.  But the nurse said due to swelling internally, it may not be until nearer Xmas that we'll have that news.  Terrific - friends will be demanding progress reports that we just can't give and not believing us when we say we don't know yet.  So we have planned a strategy on the journey home.  We will tell anyone who asks that we won't know until AFTER Xmas - that way we will have some breathing space to deal with bad news or quietly celebrate good news before we get hassled for answers.  Ian's sister and several friends demand information but are short on any kind of supportive behaviour - they just like to be the ones who spread the news. 

    So 10.50am Thursday 8th is Radiation No1 from the front of the belly and also from underneath.  Completely foreign territory to us and it's scary to be swimming in unknown waters.  It took a conscious effort not to push the elevator button for Level 2 where the chemo dayward is and to select Level 1 instead. 

    Everyone we spoke to today stressed that diaorrhea was likely, so although we have a bottle of 90 pills for that which Ian has never needed, I guess we'd better ready ourselves for that.  A bit weird though in that the increased dose and use of morphine is apparently going to bung Ian up and I'm filling him with kiwifruit and wholegrain oats to keep him loose, but I am being told that he'll be "loose as a goose" for sure - duuuhhhhh?

    Lorraine

  • Hi Lorraine

    Glad to hear the first session went OK (in the end...) - it's all such a learning experience isn't it, I really never expected (or frankly wanted but we don't get much choice in such things do we) to become a relative expert in freezing brain tissue and radiotherapy side effects etc. You'll be an old-hand soon though and know your way around! You really struck a chord with me about friends/family not believing you when you say there is nothing to report - I'm glad I'm not the only one who is constantly faced with these questions and an obvious suspicion that we are keeping things from them - I have tried on numerous occasions to explain that getting information ourselves is like getting blood from a stone and that we will share what we know as soon as we know, but they clearly believe they are being excluded. Very frustrating, I get this constantly from my parents in particular, who also seem to want to be the ones to impart the news to others or at least hear it first (why on earth would you want that or find order of priority of hearing news important in the great scheme of what is actually happening I find myself wondering). Having to deal with other peoples' expectations and feelings of entitlement on top of everything else can be downright wearing, and I hope your strategy creates a buffer for you! Good luck with the charming side effects - I'm sure you're waiting with baited breath to see which way it goes

    Thinking of you,

    Vikki