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
  • I've been posting to other people, steadfastly ignoring my own situation.  We'd have to be blind to think Ian's no worse.  We have two blood tests in two days as proof and a looming CT result on Monday.  We had so much planned for the end of last week that I suggested Ian have the pre-Mon clinic blood test on Wednesday - less to fit into our hectic social calendar - yeah right!!  The hospice nurse came for her home visit on Thursday morning and noticed our bags packed in the hallway ready to stay the night before the CT scan (and prevent an early morning start and 30ml dash to the hospital).  She approved the "grabbing fun where you can strategy" but then said she might have to put a spoke in the works.  Ian's blood test from Wednesday had shown his blood/calcium was on the rise and was above the normal, safe level.  She was gobsmacked that he wasn't displaying all the symptoms she expected - nausea, vomitting, confusion etc.  We talked about the last week or two and when I said I was bombarding us both with chilled water to cope with the heat (and help me with my Weight Weighters/New Year's Resolution regime) she said that explained it - and that was the only thing that had prevented Ian having really bad symptoms.  Fancy that - good ol' H2O.  She asked for a blood test that afternoon just to be sure that Wednesday's wasn't a lab error but warned us an IV drip was likely after the CT was sorted in the morning.  I missed her call on my new cellphone that afternoon but that's another story (57 yr old women shouldn't buy flash new technology).  I eventually got the message in the evening that the hospice were expecting Ian straight after the CT scan for a 4hr infusion of a drug to redress the blood/calcium problem.  So we got the CT under our belts and went to the cafe for a proper coffee and a sandwich for Ian who had been nil by mouth for 4hrs and then drove the 200m or so to the hospice.  There they had a bed and meal ready for Ian and a bag of fluid - and a hard seat and not so much as a cup of tea for the Dragon Lady at his side.  Luckily I knew the ropes from last time and retrieved leftover yoghurt from my breakfast out of the boot of the car.  I know my place.  Full-time carer/nurse 24/7/365 - unless Ian's at the hospice - then I become invisible and valueless!!!  Nurses came and went and the infusion was sped up (to let us go home early), then slowed down (Goodness, who sped that up!!) etc etc. and then Ian's evening meal was delivered (a little paper parcel of fish and chips which I watched disappear with a little dribble of saliver down my chin ) and then I got to drive us home on an empty stomach.  No, I tell a lie - the hell with Weight Watchers - I stopped at a dairy and bought us an icecream each!!!!  So a busy and stressful day but an OK day.

    Yeah right!!  I don't know what time I heard Ian get up the first time and go to the ensuite.  No, not a peee, vomitting, full-on vomitting.  He returned to bed and shook and shivered and whimpered.  Shame on me I know but I was just desperate for sleep.  I didn't react, didn't turn to hug him like I would normally, I was just so sick and tired of this whole scary cancer "he's OK, he's not" journey.  Then at 4.19am he was up again and vomitting again.  I grabbed trusty Android phone and dialled the hospice.  I was barely awake but anxious not to take the flack this time for not reporting vomitting.  And I was bombarded with questions from the night nurse - what colour was the vomit, what time was the first, what drugs was Ian on, at what doses..... I got shirty.  I mentioned it was pitch dark, that I was in the bedroom and Ian was hugging the toilet, I hadn't a clue what colour the vomit was (and quite frankly didn't plan to find out as vomit is one thing I simply cannot handle).  As to what drugs was he on, for goodness sake, isn't that what their computer is for.  I was instructed to give Ian one quarter of a Nozinan (which he promptly threw up a while later but again I was almost comatose with exhaustion).

    The nurse had said the palliative care nurse would ring after 8.30 and by 9.30am I hadn't heard so I rang and got a flea in my ear because the call to me was "on the list" but I hadn't got to the top yet.  After a curt exchange though we settled into a comforting conversation of 45mins and the nurse was helpful and reassuring.  She said another 1/4 Nozinan at 10am should help with sips of water and no food all day.

    So I am on standby - terrified to have a much needed nap in case I sleep through another episode and feeling guilty that after the second vomitting when Ian came back to bed and turned to me for comfort I just couldn't give him any.  I thought they would demand I drive him over this morning and I just had to get some sleep.  I have driven the 30ml journey once before with only an hour's sleep after Ian had an allergic reaction to chemo 18mths ago and I don't plan to repeat that experience in this lifetime anyway.  So he's sleeping (lucky him) and I'm feeling selfish and stressed.  I realise now that this end of life journey is going to be much harder than I ever imagined.  I am seriously doubting my ability to nurse Ian at home - especially if there is vomitting or lack of sleep involved.  And with our business partners trying to shaft us with a ludicrously low price for our share of the business I really don't think I can afford to hire anyone to help me - especially when I don't know how long this phase of the journey is going to last.

    So much hinges on Monday's CT report.  The blood/calcium indicates the cancer is in Ian's bones.  His awkward gait and difficulty bending suggests to me its in his spine.  But then I'm no doctor!!  Just the 24/7/365 drudge when the hospice aren't on duty   Do you sense a large dollop of self-pity???  You should.  I feel so sorry for me and I feel so very sorry for Ian.  We are nice people.  We don't deserve this....

  • Hi Elkay,

    Someone a fews months ago gave me a virtual shake up and I have no intention of passing it on but you are definitely not selfish, worthless or a drudge. You are a committed carer who is knackered and terrified and why not You are only human. No proper food, no proper sleep, no proper recognition by some people who should know better. What you need is a huge huge cuddle (its only virtual but am sending it anyway).  You must not feel bad about turning your back and hoping it will all go away.  Anyone who has been on your journey would feel the same and sometime I expect it will be me (I am only a year older than you and really related to your 'phone' phobia - I still give my landline number as never remember the mobile one and often wish it was in the bin just to give some peace).  I sincerely hope that Ian's next test shows some improvement for you both to take heart from but even so can you (not sure Its my place to suggest this but felt the need) get a couple of days respite care for Ian  so that you can take some 'ME' time. My Mum did this when my Dad was ill and whilst the fears do not  go away, you gain a little more strength to cope. You are a wonderful caring loving couple and this is such a hard time for you please take care and use us on this wonderful support forum to share your story and help with the ranting and frustrations that life is currently throwing at us.

    In my thoughts

    Regards Jules54

Reply
  • Hi Elkay,

    Someone a fews months ago gave me a virtual shake up and I have no intention of passing it on but you are definitely not selfish, worthless or a drudge. You are a committed carer who is knackered and terrified and why not You are only human. No proper food, no proper sleep, no proper recognition by some people who should know better. What you need is a huge huge cuddle (its only virtual but am sending it anyway).  You must not feel bad about turning your back and hoping it will all go away.  Anyone who has been on your journey would feel the same and sometime I expect it will be me (I am only a year older than you and really related to your 'phone' phobia - I still give my landline number as never remember the mobile one and often wish it was in the bin just to give some peace).  I sincerely hope that Ian's next test shows some improvement for you both to take heart from but even so can you (not sure Its my place to suggest this but felt the need) get a couple of days respite care for Ian  so that you can take some 'ME' time. My Mum did this when my Dad was ill and whilst the fears do not  go away, you gain a little more strength to cope. You are a wonderful caring loving couple and this is such a hard time for you please take care and use us on this wonderful support forum to share your story and help with the ranting and frustrations that life is currently throwing at us.

    In my thoughts

    Regards Jules54

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