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,

    I couldn,t believe the photo thing as I did the same & already had lots up but put even more up I wanted to remember him as he would have been without the cancer taking over his body. I did put one pic up in the bedroom take two months before he died but that wasn,t my John in that pic it was the cancer. I have to say I think you are right maybe I needed to see how he had become to believe, to let go & grieve for him. I got up this moning & thought what it the point & have cryed ever since. I,v stopped now as reading your post,s always make me think in a different way, maybe the I cant move forward as all I see is how well he looked all the time & cant accept what he had become.

    Your post are so inspirational thank,s for that Sue right you could be a writing.

    Gioux XXXx

  • Hi Sueps

    Yes I have done the same with the pic,s & yes I see one of John only two month before he died and it shock,s me to see him like that, I didn,t see how bad  he looked until I looked at the other pi,c & see how well he looks on them.

    I have his picture,s all round the house I need to see him I kiss his picture by the bed every night & every morning, say good morning & good night.  People say how well I,m doing if only they so the other side shouting screaming I want him back, please could back John, even though I know he would if he could he didn,t want to leave me, as your husband didn,t.

    I,m four month,s down the journey poeple say it gets better well I feel worse !! I know it,s still early but I feel that I,m going backwards. Yes people seem to think a few months you,ll be better, one day they will find out just what it,s like until then they have no idea how hard it is.

    Glad you are keeping busy with the house move & paper work, I have been thinking of moving as well but find it so hard to decide what to do for the best as I always had John my best friend who I made these decisions with.

    I have been having a bad morning a dear friend is always on the other end of the phone to help. I told her John & I were so close & lived for each other that it,s so hard without him. she told me she know,s of none else she know who as that love for each other as we had. I cryed my eye,s out realising again just how much I have lost in John.

    I read you & Lorraine,s post & they help me all the way to try & do my best to carry on for John as that is what he would have wanted, so thank,s

    Gioux xxx

  • Hello sueps,

    Just wanted to let you know I activated your private messaging this morning. I hope it works fine for you? You can find out more on how to send a private message here.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Hi Elkay i am so sorry for your loss. I have been following your story like a lot of other people on here, and you are such a brave woman that has given me so much inspiration with my own battle with cancer. I haven't been on in a long while , but when i was new to the chat in june/july your posts always provided me with a lot of confort and strength and a smile to face  as they did with so many others on here. How are things going with you at the moment and did your cats come back that same evening :)?
    Right back soon.
    Lots of love and hugs =]
    -Mya
  • Hi Lorraine

    I just read your message too and I am starting to fill up.  My mum could relate to a lot of what you said after my father died.  They would have been married 49 years this December and they knew each other from the age of 15 a very long time. 

    I can't believe some relative said they cannot "do" cancer.  Who in their right mind wants to "do" cancer.  Some people make me mad but you have to forgive them sometimes because they come across as being ignorant.

    I am glad you have some good friends to turn to and I hope your little bundles of fur return very soon.  They sometimes say animals are affected by the death of an owner too.

    I wish there was something I could say Lorraine to make you feel a lot better but there isn't.

    Just take care of yourself and sending you some hugs

    Mickied

  • So tomorrow night it's six weeks since I lost my darling Ian.  What a different life it is, alone and without any responsibility or structure.  My mind is still "mush" and my concentration is pathetic.  I flit like a butterfly from one task to another, without actually completing many.  I am tidying up the house with the help of a DIY friend and his wife.  It's going on the market in a few weeks time and the house Ian and I planned together is now underway 30 miles away.  It is really weird to, as I say, have no responsibility and no routine.  I can get up when I want (within reason that is hahaha).  I can eat when I want.  I can just jump in the car and go somewhere - without packing change of clothes, spare drugs, sickbags.... you name it.  I can park the car far from where I want to go and just walk for the love of it - no more parking right outside the door because Ian hasn't the energy to shuffle far.  I've sort of got my life back - but there's just such a big hole in my life that it's not really mine if you know what I mean.  I miss Ian a lot.  I stopped wailing a couple of weeks or so ago but I still cry at the drop of a hat if I catch sight of a photo on the wall, or the catfeeder goes off with Ian's message for the pusses.  I'm glad I've got our four cats - otherwise I'd have little reason to talk.  The weather has been OK lately so we all got outside to door some of the mountain of outdoor chores that need doing.  They hoon about while I plod on, doing my jobs.  I have build 58 metres of garden path - hammering in pegs and nailing on 4x1 wooden edging.  I am in the process now of barrowing shingle along this path.  When I get sick of that there's always the lawns to mow or pruning to do or weeding.  I am busy, really busy.  I joined Jenny Craig the week following Ian's death now that I could concentrate on being selfish enough to diet and exercise and think just about ME.  I am steadily losing weight and feeling better for it.  I am definitely eating better too - shedloads of vegetables.  Woman cannot survive on buttered toast alone, like I was doing after Ian died.  I am adjusting to life alone.  I am not lonely.  I make an effort to see friends most days.  I am almost always alone in the evenings but that's OK.  I like a bit of telly or a good book - and I have even rediscovered my joy of reading.  I have discovered that I am not afraid of living alone - I was sure I would be.  And I am taking baby-steps towards continuing our joy of travel.  I am having six days away to celebrate Ian's 62nd birthday next month.  And in the past two days I have done what Ian instructed me to do - continue cruising.  I have booked a Christmas cruise around New Zealand and across to Australia so I won't be alone in the new house at such an emotional time of the year.  Once I did that online I thought I had better tick the other box we were going to tick if Ian had been well enough last October - a Falls Colour cruise along the East Coast of Canada & the US.  Six months to the day after Ian's death I will fly to Vancouver and then I'll take a four day train trip across Canada to Quebec where I will join a cruise ship for 20days cruising.  I will celebrate my 58th birthday at Newport, Rhode Island and sail into the Big Apple the following day.  At the end of the cruise, back in Quebec, I have booked a train to Toronto to do a side trip to Niagara Falls, then I'll fly back to NZ via Vancouver.  I am scared/daunted/exhilerated/excited all at once at my bravery/stupidity/bouncebackability!!!  Thank you Ian for suggesting the first cruise back in 2008 - we both recognised it was something a woman alone could do safely and I know I am going to enjoy it immensely (even if there's quite a few private tears along the way). 

    I think I am doing pretty well.  I certainly didn't expect to be doing this well, this soon.  But then again we knew Ian's cancer was terminal for seven years.  We grieved together along the way.  Ian's death was not sudden, not really.  It was a shock, yet it was an expected, anticipated shock that we both knew was coming.  Like I say, I miss him, I miss him so very, very much.  But I am glad I was married to Ian.  I still believe that 36 years to a wonderful man is a million times better than 60 years, let alone 75 years to a scoundrel.  Everything that I am today is down to the life we lived together and the experiences we shared - good (lovely homes, successful business, lots of travel) and bad (cancer). 

    I'm getting there.  I hope others in the same boat as me are too.  I don't believe we have much choice - we are the torch bearers for our loved ones.  They loved living.  We just have to adjust and find a way to continue to do so too.

    Lorraine

  • Ah Lorraine, I still don't have any words for you.  I cannot imagine what you are going through, but of course some days that is all I imagine!  I am comforted that you are not a gibbering wreck.  I think about you a lot and hope you are doing OK which is about all you can aspire to at present I suppose.  I'm glad to hear you are doing stuff for yourself, eating better, exercising etc.  I too love cats and often in low moments go onto Youtube and watch videos of cats doing funny things which always cheers me up.  I have another new Grandchild now - arrived last week - a little girl, unexpected that was we all thought we were expecting another boy!  I am three hundred miles away so dont get to see them as much as I would like but photos help.

    Keep looking after yourself Lorraine and take lots of my love with you each day.

    Lyn

    XX

  • well done girl - Ian would be very proud of you

  • Hi Lorraine,

    Lovely to hear how you are getting on I,v thought of you often & woundered how you are. Its lovely how you have planned all the cruises you are going on and chatted to Ian about them. I didnt speak to John that much about the future nor him me. Think by us doing it we were accepting his death and we couldn,t do that we always thought we had longer, now I wish I had talked about things more but felt guilty talking about it when I really new John didnt have one. I thought it was hard living with cancer & seeing John so very ill now it,s so much harder without him to talk to & share my life with. You inspire me with your stregnth & positivity & reading your post,s really help me so thanks for that.

    I,v had messages from Sue & I love he party idea, I was finding it so hard to go on without John, my councillor said would be a good idea to visit home for a week or so. I,v just come back it,s done me the world of good seeing family & old friends. It also made me realise I have more people  there to support me. Even thought I,d like to stay here it,s not the right thing to do at this time for me. So like you I making plan,s for the future I,v decided to go home & see how i goes. It just feels like I,m leaving my life with John behind !! but I know I have to do this to a point to move forward with my life & it,s part of the grieving.

    Take care sending my love Gioux XX

  • Hi Lorraine,

    It was lovely to read your update and to hear that even though you are suffering the great loss of Ian,you are moving ahead with all those plans you had made. I should think with all that DIY/labouring your muscles will be growing stronger and its wonderful that you are managing to fill your days and rediscovering life. Wishing you continued enjoyment as you carry on celebrating Ian's memory he would be immensely proud.Jules