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 Lorraine,

    What a wonderful outlook you are showing us on here.  You travelled the cancer road with Ian every inch of the way, made the most of his well times, suffered with him during the bad times and have been totally inspirational to anyone who attached themselves to  your thread.  I have read (first in fact) your post to NewZealander1 and your way with words is amazing. I felt like you were talking out of my computer and imagined you sitting there with a glass  of wine (hope there have been a few toasts by now) and showing us that your life. though so newly alone, is actually filled with everyday things (with Ian your guiding light). Thank you Lorraine for being human, being there for others in such a caring way. Your motivation may flag from time to time (whose wouldn't) but am sure Ian is telling you to live that live you love and with his blessing.  Being honest with your lost but now re-found friend (even if it was accidentally on purpose) is a credit to your character and I hope you enjoy that chinese and that the bridge will carry you both into a better understanding (on her part). Good friends never go away completely (they just rest from time to time when they cant cope!!). Wishing you well and thanks for posting as you are so right, I think I can safely speak for all those who have posted here that we wondered how you were and would love for you to stay in touch when you want to.  Hugs coming your way from a chilly outer London.Jules

  • Hi Lorraine, I hope you and your friend can re-establish some sort of relationship at this time, talking will help in some way I'm sure and having friends at this time is important.  You may just need a sounding board at some point to rail at the world and get angry with and I hope you have the sort of friends who will understand this.

    Much love

    Lyn

    XX

  • Hi Lorraine

    Just read your message about Ian.  He is no longer suffering from any pain and he will never leave you.  I am sitting with tears in my eyes writing this.

    Look after yourself and take care.  I hope you have plenty of people to turn to at this time.

    Mickied

  • Hi Lorraine,

    You are one strong brave lady !!  Glad your ok, I love the way you look at things in such a positive way thank-you for taking the time to let us all know how your doing we are all thinking of you.

    Love Gioux xx

  • Hi Lorraine Im so sorry to hear about Ian I have been reading yours and Ians  inspirational story and  gathered so much strength from it.

    My love to you Pam x x x

  • Hi Elkay, me again - ok so we are both on the same side now....at this s***ty party by ourselves. I find I am  functioning apparently normally - according to others - for about 85-90% of  the time. But at least twice a day go into complete meltdown.  Fortunately the house I am in at present is detached and fairly  soundproof so my howling like a deranged banshee does not seem to  disturb anyone else. I do permit myself some normal level snivelling  when in front of others but THE BIG STUFF I have managed to contain for  when I am alone. Which is actually most of the time now . I was very  fond of saying to Ray , especially after a particularly gruelling  surgery or chemo bout "I would do it for you if I could. " and I meant  it. I would gladly have taken or shared the pain if it could have saved  him any suffering - Well I am now.....All of us left at The Party by ourselves now take the full burden of pain and suffering - but our  boys don't have to now. On the really bad days / howling sessions I  remind myself of that and it does help a tiny bit. Also if you have a really  good meltdown session you find your nose gets so blocked and gungy  you can't  breathe so you have to stopafter about twenty minutes!.

    I try when going out into the normal world  to pretend I am "normal" but can manage to introduce Ray into any  conversation within 2 or 3 minutes - especially to total strangers -  they tend to look a bit bemused when I suddenly announce he has just died - carrying photos is also helpful for this. PLEASE don't think I am being  in any way flippant or underplaying the grief - it is huge and alll  encompassing- but Ray was so brave throughout his treatments and  especially when faced with treatments etc. He always chose a  particularly bright coloured shirt if he was feeling low as part of his  armour against the world. I am trying to use the same technique. I  loathe living here by myself but paradoxically don't want to be with  anyone else - I just want Ray back - but I guess that's not likely to  happen... I am taking one day at a time and trying to pretend he is  standing behind me watching my progress - I do want him to be as proud  of me as I am of him. You may not have had your smile at the end but you did get the "I love you" and that is worth it's weight in gold. Besides technically Ray was actually gone at the point his face was in a smile so I am not sure if that truly counts! I have just been to see my daughter for a few days who lives in Ibiza Spain - she had dragged me out to a cancer charity bash with loud music etc etc, I was feeling a bit sorry for myself when suddenly behind the bar I spotted  bottle of Ray's favourite single malt whisky "Four Roses" - We never ever see it anywhere - so very weird  - I thought I would order a shot and toast him even though I am not a whisky drinker ---forgetting that a Spanish measure is about three of our measures.... the afternoon brightened considerably for a short while and i bet he was laughing at me.

    I am sorry if you think it a liberty but I referred to you in a post to another newbie "If you want to read about the journey of a really  brave lady have a peep at ELKAY... She is amazing as are many others on  this site" - I am working my way around - best luv sueps

  • A few more "alone" days have gone by.  It's obscene how quickly the days have passed since Ian died.  Newbie/Russ contacted me direct and said I probably had a hole in my world the size of Ian.  It was beautifully put and so descriptive of how I feel. 

    I couldn't shake the image in my head of the "corpse face," waxy and completely unlike my lovely Ian's face.  Every time I tried to bring his face to mind I got that image.  When Marianne went home the other night after our Chinese reunion I had a brain wave.  All the photos from the cruise photo opportunities that I had bought because we always looked so happy and relaxed and hopeful were sitting in my filing cabinet.  I dragged them all out and rushed about the house pinning them to kitchen walls, bedroom walls, bathroom walls. 

    Not the brightest idea as it turns out.  The "corpse face" reminded me of how very sick Ian was - how only death was going to stop the pain and the suffering.  Now I am surrounded by a fit, happy, vibrant, sexy man and my loss is somehow immeasurably bigger.  I even have a lovely photo of Ian on the right half of my computer screen, taken on Christmas Day 2011 smiling happily into the camera, even though just two days before the oncologist had said the five months of chemo hadn't worked.  That man deserved to still be alive, eating, drinking, laughing, getting oil and grime under his fingernails at work!!  So take a word from the wise, newly bereaved, maybe it's better to keep that desparately sick image in your head until you get used to your beloved being gone.  Damage is done for me, though!!

    Ian didn't want a funeral service - didn't want to give hypocrites an opportunity to "pay their respects" to him after his death - whilst never coming near him while alive.  I have waited a few days and put an Acknowledgement in three newspapers.  A sort of obituary/death notice/thanks notice.  Despite living in a very small town (6,000 population) word apparently hasn't got about that Ian has died.  I imagined the tom-tom drums would have done the trick - along with comments about the weird way I dealt with his passing.  But no, word is filtering back that lots of people are making favourable comments about a lack of huge funeral service; that many would want for themselves what I have done (or not done as the case may be) for Ian.  The fact is that is what he wanted - and neither of us ever cared about being conventional.  We never wanted to have children and were very open and honest about that with anyone who harrassed us about the subject - pretty strange behaviour 36 years ago in most circles.  We have always done things our way.

    My notice in the newspapers read:

    Ian had a strong work ethic, a huge capacity for fun and an enormous love of travel.  He was incredibly proud of his automotive business.  His DIY skills on our two homes over our 36 years together were amazing.  When Ian became ill with colon cancer in November 2005 only one or two years remission was likely.  After chemo he threw himself into work and fun until his relapse in July 2011.  It was a long, unrelenting fight until Ian's death at our home on 29th March 2013, aged 61 years.  It was Ian's wish to be cremated without any ceremony but he wanted me to acknowledge the wonderful support of the following people, particularly in the last few weeks.....

    I went on to name the close, old friends who had supported us and some much newer but equally wonderful friends and then Ian's sister and her husband, their son and his wife and my aunt. 

    My parents and Ian's brother and my sister (who are married to each other) haven't had anything to do with us for years - it appears they do not "do" cancer - Ian and I would have loved not to "do" it either.  My brother is allergic to terminal illness and had only texted for several years so he didn't come under the "supportive" category either!  I had drafted the notice with some very bitter comments and when I read it out to our nurse friend, Sue, at 2am after Ian had died she gasped and declared I couldn't say that stuff.  I ran the draft by another newly-bereaved friend who had known us for 35+ years and she said the same.  So I rewrote it, leaving out any reference to the toxic family and the nasty ex-business partners (who still haven't so much as sent me a bereavement card) and I think the notice says more with its ommissions than it would have with its vitriole.  So my two friends did right to reign me in....!

    I have had an OK day.  I made a huge vegetable soup yesterday that would have only lasted the two of us a couple of lunches.  Perks of being on your own - the food lasts longer.  I sat outside in the autumn sun with cats spread about, sipping soup and reading a magazine - an unheard of pleasure a couple of weeks ago when having a moment to myself was unthinkable.  And I yearned to return to those days.....  I surprised my lazy body this morning on getting up when I did half an hour on my treadmill - and completely shocked it tonight when I did another 1/2 hr while I waited for Sue to bring fish and chips for our evening meal.  I was supposed to be teaching her how to use her android phone after that but she has gone home to bed because the battery isn't even charged - lessons abandoned for the day!!

    So it's 10pm here in NZ - daylight saving ends tonight and Ian never showed me what buttons to push on the various clocks in the house.  If he doesn't come and guide me in the morning, I'm going to be late to every appointment in the next six months

    Time for bed. 

    Thanks again for the lovely posts to me from you all.  I am so glad I found you all!!  And Sueps - when I read your posts, it's like reading one of my own!!!  Have you stolen my identity hahaha   You are only a step or two ahead of me on your Newly Alone Journey.  It's lovely for me to read of someone else who is making the best she can of sad times - and reaching out to others is one of those ways to make the best of it.

    I am catless tonight - my friend left the front door open when she went to her car to get her phone and my darlings all abandoned their roaring fire and disappeared into the night.  I wonder if I will wake in the middle of the night trussed like a chicken with furry bodies down either side of me???

    I have just glanced again at the lovely photo on one side of my computer screen - I think I need to try and find some grumpy photos of Ian or I'm going to have to buy more hankies!!

    Night night y'all.

    Lorraine

  • Hi Lorraine,

    You should write for a living and I need virtual hankies. Your way with words and how you express your feelings are truly breathtaking and emotionally charged. I cannot even begin to know what you feel but the 'no funeral service' and the newspaper dedication was a great reflection of both yours and Ian's feelings and the courage you have shown throughout the journey is reflected still. Both happy and grumpy Ian pics will stir your emotions and I am waiting for bashful, sleepy, dopey, doc and the other one)? to join in.  Sorry your furry mates deserted you  but bet they will be back to comfort you (and get fed!!) by morning - creatures of habit after all.  Sending hugs and calm days ahead  and hope those clocks set themselves right!  Best wishes Jules

  • Hiya Lorraine

    ,

    Yep we appear to have a great deal in common I think - our choice of fonts being just one of those things...I couldn't believe it when you said about the photos - that's exactly what I did.  I became quite desperate to "see him" so rounded up pictures all over the house. Then realised as you did just exactly what this sh*t disease did to my boy. In the last couple of months he had aged ten years but I hadn't really noticed until I started looking at those blo*dy pics. Then you really realise just how huge the loss is.


    Great, so I still have my photos everywhere - and I mean everywhere - in my handbag, on a keyring, in the bathroom everywhere. But at least I am not actually talking to myself now....well I am but you know what I mean.  I even have my meals next to a piccy with a bottle of beer in front of it "for him".. I don't think I am going mad-  people have told me "how well I am doing" . Hah that's cos they don't see me wailing and bawling every day - desperate to see him , smell him , cuddle him - you know what it's like.


    You try and make a start on sorting things out and then get panicky if if you throw anything away - it feels like you are throwing them away - so now I wear his socks, shirts etc And my giant teddy has come back out from under the bed and is wearing one of his cheeky Jessica Rabbit ties . My goodness and I think we are the strong ones!!!!


    I am actually getting the house prepared for sale , as we planned I would and so am keep extremely busy with that and all the paperwork. But there is still plenty of time for ranting and raving like a mad woman.

    At the moment I can¿t really see how this hurting is going to stop ¿ being with other people actually makes me feel more lonely  and they get fed up with me wanting to talk about Ray and STUFF all the time¿it¿s like they think you are going to recover in a month ¿ guess they will find out the hard way one day it¿s just not like that.


    I was going to try and send this as a private message to you as it is not quite our normal upbeat style, but heyho can¿t see how to ¿ so I guess I¿ll just have to frighten everyone else with my meltdown.


    Best luv ¿ you know I understand exactly how you feel ¿ not that it helps ease your pain at this vile time but you know what I mean

    sueps

  • Indeed I do Sue, indeed I do.  I have an Ian shirt on right now.  I slept on Ians side of the bed last night - it made sense being closer to the ensuite anyway so that made sense didn't.  Dont worry about being upbeat - let alone bleedin' pppooosssiiitttiiivvvee like people want.  I defy anyone tell me theres a positive aspect to losing the love of my life while I'm still a young-ish woman.  The thought often flashes thru my head - 30 more years without Ian????  The hospice have grief counselling and my first session is Thu morning. Maybe that could be construed as a "positive" because the 73yr old newly-widowed friend I took out for lunch today isnt getting counselling because Jim died of heart failure suddenly and wasnt under hospice.  In case we get too dark and scary for people you can request the moderator signs you up for private messaging.  I cant guarantee a rapid reply (ask Grumpy cos shes still waiting) but I'm getting more chores done as the days go on and I'll have time for the computer.

    So just keep plodding along - remember we just have to survive for now - thriving is quite a long way off I suspect!!

    Lorraine