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.

  • On the contrary Lyn - I think that deserves a really good grumble.  Has somebody out there got a voodoo doll with your face on it hahaha.  A positive to spending a fortune on a brand new house - the chimney won't need sweeping for at least 12 months hahaha.  Funny you should mention the cat babies - who are celebrating their first year with us today - but celebrating it outside in the cold and dark whilst me and the four year old Rosie are warm by the fire!!  I have spent most of the afternoon researching cat fencing because it's going to be hard for them to adjust to being in a town situation after having the fun of 4 1/2 acres - and I couldn't bear the heatache of losing one or more of them.  I am anticipating spending an obscene amount of money on making them safe but it will be money very well spent for the love and company they give me.  I hope your run of bad luck and expense is at an end so you have more money for pink frillies 

    Its lovely to hear from you - you've cheered me up - not your disasters mind you, just hearing from you.  I'm been having a tough time since I got home to my lonely, empty house from my lovely break.  I feel like I've gone backwards by weeks in my grieving journey.  I am crying at the drop of a hat and feeling that I have nothing in my life - I almost feel worse than I did when Ian had first died.  This grieving process sure is c**p.  Time to microwave a Jenny meal and eat by the fire - can't even have a glass of wine 'cos it's weight-in tomorrow and I am trying to be good 

    Take care.

    Lorraine

    Nice

    Lorraine

  • Hi Lorraine

    Not really surprised to read that the return home has knocked you for six.  You were such a wonderful support for Ian and your days were filled with being there for him there was no time to stop and think.  During the grieving process there is so much time to think and you have a lot of changes to take on board.  The tears are your release valve and are much needed  even though this part of your journey is totally c--p as you put it.

    You made me smile when you talk of cat-proofing the new garden. How high can your fencing go.  I am sure that with all the love and attention, not to mention the food bowls, they will adjust and be easier to find in the smaller space!!  We have lived in the same house all our married life and our back fence now resembles a bit of a puzzle being held together with a string maze (my handiwork) to stop it falling into the service road behind!!  Needless to say it could be a while before that changes but gives our back entrance a unique look as the old gate in is now horizontal rather than vertical and you would need to be sideways to read the number. Of course, when I win the lottery I will get a new one haha.  Take care and virtual hugs coming your way.Jules

  • *bashfully pops in among the regulars here*

    Hello, Lorraine.

    As a 'Newly Alone Wife' in waiting (not quite there yet, but sadly.....it's coming), I've been having some well-earned me-time today.  Pushed my hubs out the door a couple of hours ago, insisting that he absolutely should go swing a few golf clubs about with some of his buddies on such a sunny day (and with him feeling fine and all).

    So I've been spending a large part of my me-time reading your thread - every single word, on each of the 21 pages.  Through it all, I've been mumbling to myself.....comments like: 'how beautifully written', 'how poignant', 'wow....!', 'awwwww....' (usually accompanied by a dampening around the eye area), 'SO vivid!'....etc, etc....

    I have learned, and hope to still glean, a lot from you.  You're a true inspiration and an extremely feisty, gutsy lady.  My kinda woman!   Please keep writing.

    I'm very sorry for your loss, Lorraine  ~ x

  • ....and as a quick PS...it would be disrespectful of me not to at least acknowledge Sueps and all the other bereaved people that have so warmly contributed to Lorraine's amazingly poignant thread.

    My sincere condolences  ~ x

  • The storm has thankfully passed.  I took my weekly trip to the city yesterday and went through the electrical plan with the architect after my weigh-in with Jenny Craig.  I went to a cafe for lunch and as I sat alone people-watching and reading a newspaper and sipping a huge latte, I suddenly realised I felt happy and I was enjoying myself.  Is it just that I was eating?  Does food make me happy?  Well the answer to that of course is Yes.  A friend is a bit dismayed at how much food featured in Ian's and my life - and continues to do so.  But hey! it's legal fun and I'm not about to stop now hahaha.  Today my cleaner came and we had a few giggles and her husband helped me with some more DIY on the house, then I spent an hour in front of the fire with Bill Clinton's autobiography, then the firewood man delivered a truckload of firewood which we stacked together as we talked.  I managed to close the curtain beside the photo of Ian that usually makes me cry without losing it so then I knew that the storm had definitely passed. 

    And why wouldn't the grieving be as much as a rollercoaster as the cancer journey that Ian took and I shared as best I could??

    Yes, Jules, I know, I am putting blind faith in a 2 metre fence to coral my precious little mates - how naive am I??  I just couldn't bear to lose any single one of them to traffic or any sort of accident or injury.  But I guess the neighbours don't want a Colditz-style home beside them either   It will be November at the earliest before I can move into the house (it's likely to be finished just as I leave for my trip to Canada and I don't anticipate moving house on the way to the airport hahaha) so I am hopeful that in that time they will get more lazy and porky and lose the desire to jump fences

    Lorraine

  • Please don't be bashful   You are very, very welcome!!!

    Crickey - well done you for wading through the 21 pages.  If one single paragraph by me or one of the other posters has helped you, it was time very well spent   Ian's and my journey together was such a very long one and such a very hard one.  I guess that journey and all its ups and downs and pleasure and pain made me the feisty, gutsy lady you see me as (and in fact I feel most days).  I never knew I had "it" in me to support Ian through the thick and thin of that journey.  I had been Super Selfish.  That had been one of the reasons why I readily agreed to Ian's desire that we be childless.  You have to be a very unselfish person I reckon to through yourself into caring for children and definitely have to put yourself last on lots of occasions.  I wasn't a "last in the queue" sort of person.  Boy, Ian's cancer changed that.  When we first had it confirmed, Ian told me (much later) he thought I might run for the hills.  I was deeply hurt that he had such a low opinion of me - but I also knew that he did well to wonder if I could "be there" for him.  I slept one night in the lounge on the sofa (hemmed in by two cats) but that was mainly because I was SO ANGRY that he hadn't made a fuss on feeling unwell for so long and that a succession of GPs and locums had treated him for gastric reflux.  I woke the next morning and tried to sneak back to bed but Ian had been up during the night to look for me and knew I had "left him" however briefly.  That storm passed quickly and I knuckled down to fighting alongside Ian - fighting the cancer, fighting for remission, fighting for fun (so much fun ) and then horribly fighting that final fight when the cancer fought back.

    You as a "newly-alone wife-in-waiting" have an awful time ahead of you.  But there can be some wonderful time too.  Seize those moments and don't let them go.  If there is anything good about a terminal cancer, we have time to talk (if we can or will), time to enjoy each other, time to plan for the "alone time...."  To lose a loved one in a heartbeat to a car accident or a sudden heart attack.....  No time to take special care of your loved one, talk about a lifetime shared, memories treasured.....  In the weirdest way, if I absolutely had to lose my darling Ian, I would rather it was to a long, hard, brutal fight with cancer, than suddenly with no warning and maybe just after cross words had been spoken.

    Thank you for your sorrow for me, and for Sueps and all us widows or widowers.  When we stand at the top of that aisle making promises of "till death us do part" we just picture that happening at some incredibly ancient and decripid age.  To lose such a treasured person at a youngish age, as many of us are, is very, very harsh.

    Take care of yourself Serena - take Me Time whenever you can in any way you can.  It might only be a few minutes with the sun on your face, or an hour or two with a good book, whatever spins your wheels.  And hug and laugh with your man as often as you cry with him or for him.  When I was signing a probate form I just lost it to see the absolutely certainly of Ian's death there on a cold document.  I apologised to my solicitor but she took my hand and said it was the greatest compliment she could imagine for Ian that weeks after his death, I was still so easily moved to tears.  She said (rightly) that it would be very sad indeed if I had "moved on" so quickly and easily.

    Hope both you and your husband had an enjoyable day - just as you deserved

    Lorraine

  • PS - just looked at your profile and "tagged you" so I'll get an email when you post on the site.... the photos are gorgeous.... and how horrible that you have had such a short time of worry-free happiness before this awful journey together began 

    Lorraine

  • Sorry you had such a bad time the other day, I expect that will come and go over the next few years, just as it did before Ian died.  I agree with what you said about enjoying the good times even though I know that I will be a widow one day. I gave a bit of thought at the beginning as to whether it would be better to lose someone suddenly in an accident or slowly with terminal cancer and I have come to the conclusion that this is better.  I know there will be rotten times coming up when the illness develops and symptoms change but for the time being just being able to live a life where we can talk, reminisce, make new memories etc is wonderful and it makes me appreciate what I have all the more.  Of course It's not all moonlight and roses, we still bicker and argue now and then - the stresses and strains of everyday life are  still there - no-one is perfect but we both know they don't mean a thing in the allness of all.

    Now cats.  I had a cat back in the late 70s called Sambo and he went out every night but was killed on the road, I was so bereft that I decided to have a baby (I'd never wanted children before) - I never got the chance to change my mind as I fell pregnant immediately!  I have told my son over the years that if the cat hadn't died he wouldn't be here now (hope that hasn't scarred him for life!).  My next cat was Fluffy and she lived 14 years and was one of on two things I took with me from my first marriage when I met and fell immediately in love with present hubby (the other thing was a vacuum cleaner).  So determined was I that she wasn't going to suffer the same fate as Sambo that she was kept indoors all the time.  When she died, at 17 years old, I said that was it, the heartbreak is too much and haven't had another pet since.  I have since developed an allergy to cats which is a terrible thing when you love them so, I come out in hives and wheeze and cough when I am near them for any length of time.  So now I confine myself to watching them do funny things on YouTube when I am feeling low.

    Food - yes food is a major part in our lives too and I always know if hubby isnt well - he goes off his food and for a super heavyweight like him that is a major thing.  I feel that as long as he is eating all will be well, when he loses interst in his food I will know the end is coming!  We are both obese, I dream of a day when I can be classed as just fat!  I have always been overweight but haven't let it stop me doing anything I want to and I am hardly ever at the doctors, I don't ail much at all - haven't time to be ill!

    Well back to work - was offered a promotion at work recently but had to turn it down, I told them I couldn't guarantee the time and effort needed to do the job.  To be quite honest I'm not that upset about it - I turned 57 recently and I feel I am past my best now and need to wind down a bit, unfortunately with all the changes in the pension age and low return on pension schemes I will have to work till I'm 66 - I'll be traversing the corridors with a walking frame and have a desk draw full of Tena Lady pads by then! 

    And on that note - keep well.

    Love Lyn.

  • Hi Lorraine

    Good to know that despite being on Jenny Craig regime you could enjoy the Latte afterwards. Hope you happy with your 'weight' check up too.  Food does indeed play an important part of my 'enjoyment' of life but some few years back I managed finally to lose 30 yrs of 'baby' weight (never regained my figure properly after two pregnancies) and shed nearly 3 stone.  Now I am under the docs for raised cholestrol so am watching what I eat but do not necessarily have to eat less just differently(no always easy).  Since mid April I have actually lost  about half a stone which is an added bonus to my new regime, though I  have not cut out all the nice things as that would be silly.  Comfort food is a necessary evil when lives prove stressful.

    Sounds like your cats would be silly indeed to leave the one who feeds them (there we go food focus again) and am sure they will adapt . When you go away on your jaunts do you have a cat minder?

    Sounds like the house is coming along and it must be fascinating watching the changes taking place just as you and Ian had planned them (sure hes keeping an eye of what they are doing from 'on high' - heaven help the builders if they fall 'off plan' ha ha.

    Well, today (second time this week) hubby has gone to the factory to offer worldly wise words/advice and also has some consultancy work to do on the computer plus giving his boss some step by step instructions before his work trip to Japan (this is gonna make my man sad = he would love to be on that plane doing it himself, hey ho). Me time; that usually consists of turning off the telly and burying myself in a book or doing the housework whilst I am not  being stared at.  Oh, of course, fairies usually do the housework but they must be on holiday at the moment.

    Take care of yourself  and will chat again soon, I am sure.  Hugs from Middlesex UK   Jules

  • Hi again, Lorraine.

    Thanks for taking the time to reply so warmly to me. Thanks also for being so kind about my profile photos (some air brushing wouldn't have gone amiss there!)

    Sadly, I know all too well what I'll be facing in time.  But in helping to steer my darling hubs through his particular journey, I'm finding it quite remarkable how much I'm learning about myself.   Like yourself,  I've often been prone to 'me, me, me' tendencies. But in situations like ours, isn't it amazing how quickly and easily 'ego' flies out of the window?  That said, and again like you, I've become like a tigress prepared to do whatever it takes to keep my bloke on this earth & close by me for as long as possible.

    Meanwhile, I'm trying very hard to mentally prepare myself for the....'times'.  I do want to say though that in reading these 21 pages, I've learned that it's okay to rant & rage or to very suddenly fall about weeping  & wailing; and, of course, it's more than okay to smile, laugh and savour every precious moment of the sheer joy of life.  I already knew these things, but it was good seeing them confirmed!

    Let me say again, it's been a pleasure (& sometimes heartbreaking) reading you ~ x