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.

  • Evening Elkay,


    Well Morning I suppose to you... Well done on your "Ian Birthday Holiday Jaunt" - it certainly was a big tick on the list of survival. Like you have found there are some good bits, but the underlying ache is very hard to bear. My house sale appears to be going through smoothly and I have managed to find an excellent little house that will suit me very well IF I can get it.


    It's really strange the things that get you, isn't it. I have tirelessly worked on the house to get it ready for sale doing all manner of diy, etc etc all by myself - then the other night the lightbulb on the landing went and I knew I just couldn't reach it safely even with ladders etc.. I was wrecked....Beaten by a damned light bulb... Next day I sussed it phoned the tallest friend i knew AND ASKED FOR HELP.....being alone 5 feet tall I am not well suited to some jobs...


    I agree that somehow it seems as if one is going backwards in the recovery process - like a d*mned rollercoaster. But we battle on us strong girls. Our men showed us how to be brave so we just have to try.


    glad you managed a meet up with a C.C. friend.


    shame I/ you are round the other side of the world!


    regards sueps

  • Hi Lorraine. I've never "talked" to you on the forum before but have just read you and your husbands story for the first time. just wanted to say that so much of what you said has resonated with me. i sit just now with my 28 year old husband, who has terminal bowel cancer and reading your story has had me laughing and crying. Im glad that you are managing to keep yourself busy with diy and are also brave

    enough to make holiday plans. anyway just thought Id let you know that you are an awesome person fighting for your husbands happiness all these years and I hope to be as strong as you.xxx

  • Hi Lorraine, trying to get in touch.  Nigel died on the 13th of December 2014.  I tried the email address you sent last year but it bounced back - thought I would try this.

     

    Lyn

  • Hi Lyn

    Saw your name pop up and remember chatting in the early days of your first posting.  Just wanted to send sympathetic hugs on the los of Nigel. (I lost my hubby at beginning of this year).  Hope that Lorraine reads your post and you can get back in touch. Take care. Jules x

  • Hi Jules, thanks for that.  I still cannot believe that it is all over, his death, the funeral, going back to work - it all seems surreal at times.  I know it sounds maudlin but I was grieving for the whole of the three years since we got the diagnosis, especially in the early days when I would hide away from him on some pretext or other and howl into the mattress on the bed like an animal in pain.  As the years went on we managed to talk over things and even make jokes out of the situation.  In the end it was pretty fast, one day he was fine , driving me to work and going out for meals then over the course of four weeks he became unable to eat much, found it hard to walk and eventully did not get out of bed.  I got a sick note for a month and nursed him myself with the help of the district nurses who saw to his medication when he could no longer take it orally and the MacMillain and Mari Curie nurses who helped me in the last few days.  It was a priviledge to look after him and at the end mine was the last voice he heard and the last face he saw, he slipped into a coma on the Saturday morning and surrounded by me and another three friends he slipped away peacefully.  It was a beautiful death if such a thing can be said to be so.

    I gave him a smashing funeral, a humanist celebration of his life.  He went in a large oval basket - he would have liked that as it looked a lot like a giant picnic basket.  We played our favourite tunes and sang along to some of them, we laughed (honestly we did!) at some of the anecdotes told and the celebrant read out his favourite poem "What is this life if full of care we have no time to stand and stare".

    I can't say that Christmas was the easiest of times - his cremation was on the 23rd December but I went to help out family members who were having a crisis (that's a whole other story but it does have a happy ending) and that took my mind off things a little.  I'm back at work now and surrounded by good friends.  I can't say the nights are easy but I cry then I stop and get on with things as he would have wanted.  I still talk a lot to him and in my mind he answers as he always did.

    Sorry for rambling a bit here but I find that it helps to talk about it sometimes.

    Love Lyn.

     

     

  • Hi Lyn

    Grieving in an ever changing process I have found and we are all different.  We also had nearly three years of a terminal diagnosis but hubby never wanted to talk (which is how I found the forum originally!) but we had Christmas at our sons and then he went downhill very quickly and on 31st Dec. he had hospital bed delievered but right up to the day of death he would get up to 'stretch his legs' - not sure how they held him up he was so emaciated.  Brilliant help from community care and I too held his hand during the final moments.  Celebration of hubby's life was attended by so many we had to move to larger chapel  so he had a good send off (though we did have a huge hiccup caused by someone forgetting to 'tick' a box (would not go into it here) and thus final goodbye has yet to take place(but should be soon).

    Now its time to look forward step by step, bit by bit.  I return to work on Monday following nearly a month's bereavement leave (have  missed the company of my workmates who were so supportive during hubby's illness and who continue to help me.  The children and grandchildren are nearby and we are comforting each other as well as trying to do 'normal' things.  Early days but hubby was dignified in both life and death and I cherish my memories of 42 years (37 married).

    Look after yourself Lyn and as you can see I can still ramble for England. Sending hugs  Jules x

  • Hi Lyn

    I got an email to say someone had posted on my thread but I was staying with a widowed friend in her timeshare and my cellphone couldn't navigate its way onto the Cancerchat website.

     

    So today's the first chance I have had to re-register and scroll thru all those pages down to your posting.

     

    And there's the news I didn't want to read and you also "never wanted to post."  I am so sorry Lyn.  Like you say you've had several years to grieve for what you were soon to lose.  We think that's hard don't we?  How little we know!  The moment our beloved men have gone is life-changing in every sense of the word.  I'm glad you also nursed your man.  I also felt it was a privilege to care in every intimate way for Ian - he deserved my loving care.  When you wrote that he passed away with you and three friends beside him I immediately thought of Nigel's Harem that you had once spoken of - were they the same friends?

     

    So now you are alone and trying to adjust to a new (unwanted) life.  I won't tell you it's easy.  There was quite a bit of "animal howling" coming from my house in those first months of my widowhood.  But it's almost two years now - howling is a thing of the past and quiet occasional weeps still happen.  I have a Google "thingy" on the right hand side of my computer screen showing a slideshow of our years together.  Just now and then (even now) I will catch sight of my lovely fella and I just can't believe he's gone.  My four cats and I love our new house and city.  I have made friends with three neighbours and have two other long-time friends living nearby.  I take short holidays away by bus or plane, I go to the movies a lot, I have regular cafe lunches alone and I am trying to turn a clay hillside into a garden.  Life is pretty good - not awesome like it was with Ian - but good, occasionally great.

     

    You will have started on all the adjustments to make I guess - saying "I" instead of "we," making decisions alone, saying "my husband died" without losing it in public......  I had a whole 9 months when Ian had "died this year."  On the stroke of midnight 31 December 2013 it felt SO WRONG to have left him behind - weird but that's me!  Now if someone asks if I am married I have to say my husband died two years ago.  How dare the months flash by so fast they become years!!

     

    Going back to work will be a mixed blessing for you I'm sure.  Having been bullied out of our business I didn't have a job to go to - but that also meant I was very, very lonely with absolute no sense of purpose.  And once I decided I probably needed to work for financial reasons my confidence was shot and I was another year older.  Turns out 59yr olds can't even get an interview - let alone a job!!  So I am pleased for you that you have your job to return to.

     

    I think I remember you saying you wondered whether to stay in your "together" home after Nigel had gone.  Everyone's different I know but I can honestly say I have found it easier to be without Ian in the new home that he helped plan but never lived in.  I had a couple of scary moments in our last "together" home when I could "see" him trudging past the window, off to wrestle sheep.  I just couldn't bear that happening again and am glad to be here in the new house where he wanted me to be, but without "seeing him" here.

     

    I am so glad you two were able to talk (and even laugh - thank heavens for black humour!) - it must be so hard to cope alone like jules 54 had to.  When your husband is your best friend, it's the most natural thing in the world to want to talk about what's happening with him, even though it's happening to!! him.  If Ian had refused to discuss his situation with me I don't know how I would have coped - my closest female friends kept their distance in that "don't know what to say" attitude that is deeply hurtful to the person who needs their support.  In my nastier moments I hope one day they will know what it's like to need a shoulder to cry on and a sympathetic ear - I have a long memory and mine won't be available.

     

    So, all the very best for the tough times ahead.  There's bound to be some.  But they will get fewer and fewer.  Tears will be replaced, eventually, by smiles when you see photos or remember shared times.  I continue to include Ian's opinions and anecdotes in my conversations with people (even if it makes them uncomfortable) because I still regard myself as his wife rather than his widow.  He was my husband and soulmate for 36 years 52 days and he is still very much in my life (even though my neighbour thinks it's time I went looking for a new man!!!!)  There's nowt so *** as folks!!!

     

    Take care Lyn.

     

    Lorraine

     

  • Hi Jules

     

    If you've spotted my reply to Lyn you'll have seen I was away from my computer with a very basic "dummy spitting" cellphone that couldn't cope with Cancerchat's new site!!

     

    So you, too, are now without your lovely man.  Neither Nigel nor your husband had the huge remission that Ian had.  Ian's seven years and two months fight from diagnosis to death was certainly bittersweet (lots more sweet for five years!).  

     

    I was always grateful that Ian would talk to me about how he felt, physically and emotionally, and sad for you that your husband wouldn't share that with you.  We are all so different aren't we?

     

    I remember you also had a part-time job that helped keep you sane.  I guess you have returned to it and will be glad to get out of the house and have purpose in your life.

     

    Those first weeks and months without Ian were certainly hard (made worse by a whole lot of **** happening around me) and I certainly hope you only have the loss of your husband to deal with - that's more than enough isn't it?  So many people say "time will heal" and it seems inconceivable that the ticking of a clock can heal the pain.  But it does - month by month it's got easier to be without Ian - after all I don't have a choice do I?  I never did the wallowing and suicide threatening that some people have done on this site.  What happened to my husband, Lyn's husband and your husband was cruel and unfair - but life can be like that.  I am lucky to have my health and my moggies and an enormous clay hillside that wears me out when I struggle to landscape it.  

     

    I wish you well for the months and years ahead, finding your fit in your new life.  We three ladies have had more than many women have - the love of three good men and wonderful memories to make us smile.

     

    Look after yourself Jules

     

    Lorraine

  • Hi Lorraine

    It was good to open my e-mail today and see you there and know you sadly relate to how Lyn and I are having to face the new world of widowhood. Just a few weeks have passed since hubby ended his journey (seems a lot longer if I am honest) and yes, I returned to my part time job (just 15hrs a week) last week.  If nothing else it reminds me what day of the week it is!!

    As you would expect a good few sobbing sessions have come and gone and will no doubt come again but we had 42 years together, 37+ married and I am so grateful for having had him in my life  (even if he was a quiet soul who had to deal with his illness in his own way, it was a different silence to what I am now adjusting to, if that makes sense).  My sadness is that he had to have the illness at all but in all fairness he never showed anger because of it and left this life with the dignity that he showed during his journey.  Like yourself I am not a wallower and though have no plans to move from the home we had together (my family and friend base is amazing so hope to keep it that way) I have set myself a project for a 'modernisation' overhaul (so long overdue!) and when the time is right and the funds available, I will begin this new chapter in his memory (he would not be a happy man as he liked to do things himself (though rarely did ha ha) but did not do ,unnecessary change)~.  The children and I are coping on a day to day basis but there is plenty to be sorted (legally and emotionally) and thank goodness for the grandchildren (now 6 and 16mths) who are so generous with hugs and laughter.  Its a new journey and not one I would have chosen but hubby is free from the discomfort/disability that his illness caused him and his passing was peaceful, at home as he wanted (the only time he voiced his opinion was to tell us this just 6 days prior to death when the hospital bed was delivered - he hated it!!) and I have the comfort of knowing he had his wish.

    As they say life goes on, as it should, and he would want me to make the most of it and so I will put my efforts into doing that - I owe it to him and the children are helping me move forward (as I help them to adjust to live without Dad).  It is my daughter's birthday on Valentines Day and my son's the following weekend- it will  be bittersweet/emotional  as so many  firsts without hubby are but like so many others before us we will manage and slowly 'mend'.

    Sending hugs your way and pleased to hear your update and wish you continued good health and happiness in  your new home. Ian would be proud of you.  Jules xx 

  • Offline in reply to Rodis

    My husband was diagnosed with stage 4 stomach cancer in May this year, he had very few symptoms, we where shocked beyond belief. He had no treatment options, just palliative. We thought we would make the most of the time left, but we have only managed one night away, and he did a Spitfire flight which he has always wanted to do. He is 71, always very active, gym, motorbike, a great husband. I could not accept it at first, still struggling. We have talked about everything, he has planned his funeral, every detail.we have cried a lot, there is no easy way, it's torture to see him struggle each day, but we must keep going, what other options are there. Godbless to you both and take solace in all the great memories you have made x