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.

  • Lucie - 'tis I with my cook's hat on!!

    In the breadmaker process together on Dough setting - 2 1/2tsp dry yeast, 2 cups white flour, 1 tsp salt, 1 1/2 tsp sugar, 1 cup water.  When the beeper goes, take it straight out - don't let it rise - and cut into 4 (for large) or 8 (for small) even chunks.  Roll them out into rough (and believe me, mine are really rough!!) circles.  Bake in a preheated oven at 450F immediately.  They balloon up during cooking.  When I take them out I put a couple of teatowels or a handtowel over them to sort of steam them and keep them a bit soft and chewy.  Cut carefully in half into two semi-circles and stuff with gorgeous food.  Good Luck!!

    Lorraine

  • Hi Rodis and anyone watching

    Erbitux No.2 under Ian's belt

    Absolutely no reaction to the infusion so we celebrated with a meal out before settling down to fight the steroids tablet for sleep - the steroids won against Ian - don't know what my excuse was .  So at 3am this morning we scoffed the little quiches I had bought at a French patisserie to bring home - ooops   But sleep arrived at last and the four cats will be puzzled tonight when we skulk off to bed at 7.30 to try to catch up!!

    The oncologist stared across the waiting room on coming to collect Ian for the treatment.  "Yes," I told him.  "There's a nice rash coming along for you to admire."  That got a few odd looks from the rest of the waiting room I can tell ya!!!  Richard took a photo on his cellphone for the family album - no, actually to record the course of the rash.  The Rash isn't horrible and scary at all so far - Ian isn't frightening small children - yet!!!  It looks as though he's had too much sun, with a little bit of teenage acne thrown in for good measure.  I proudly showed the doctor the largest "zit" and he scolded me with a laugh and said I have to leave it alone - ooooohhhh

    Our insurance broker had started a claim on Ian's life insurance (without our knowledge or consent) those seven long years ago when he was first diagnosed.  Needless to say they haven't made a payment yet .  But given the cancer was advanced and aggressive, they have kept in touch for the last two or three years ago, on an annual basis, to see if all was well with Ian.  The Claims Manager has now offered an advance, as per the terms of the policy.  We will use it to fund the Erbitux - so we can stop eating bread and dripping - yeah!!!   The doctor had to fill in a medical report for the insurance company.  When he came to the heading "Prognosis" he gently explained that he wants Ian to do well on this drug too, but that if it isn't successful Ian only has four to nine months to live.  That's hard to hear.......  You know what realists we are - but it's still hard to hear......

    This battle will be seven years old on 4th November.  We will have been married 36 years on 5th February next.  Ian will turn 62 years old next 4th June.  So many targets to aim for.....

    Now you know why the steroids weren't solely responsible for our insommnia.

    But today's another day.  The weather's awful but the forecast for tomorrow is nice.  Ian can slather up with 70+ SPF and sit on my raised vege garden bed and watch me and the big cat and the three kittens battle to plant vege seedlings.

    Next week's another Erbitux, hopefully more Rash, and higher hopes......

    I'll keep you posted!!

    Lorraine

  • Thank you Elkay for the recipe! Very nice of you to take the time to send it as you already have enough on your plate at the moment (and not just pitta bread on your plate, bad joke sorry!!). I bet I won't be the only one on Cancer Chat to try it. Perhaps I will be the only one though to burn the pittas . I have bought some yeast as I had run out so I have no excuse now, but it will be a first for me as I have never dared to use the Dough setting before believe it or not... The recipe doesn't look too difficult and I will let you know if it was a success.

    Thanks!!!

    Lucie

  • Hi Lorraine,

    One of my, now rare, visits to the site and I'm so relieved you're keeping up with it. With the whole clumsiness of the medical services, the selfish opportunism of your business partners and now some dumb spammer trying to sell you rubbish notions about alternative therapy you've had a lot on your plate (and not good stuff to eat). Janet is doing well, a bit of a waiting game right now as she's being referred from Guildford back to Brighton Oncology before being referred on to Brighton's Digestive Diseases unit. So we don't know whether or when they'll next want to scan, prod, inject chemicals or operate.

    We're off to Spain in a week and a half for a fortnight's stay in a little villa in the mountains. Of course we had to book right next to the forest fires! From what I've seen the Spanish fire brigade have them under control but maybe we'll be visiting a burnt-out and blackened landscape.

    I hope things for you and Ian stay under control. Will be in touch again soon.

    Russ 

  • Olah!!!  I think that was Spanish for hello - we only had three days in Barcelona before our Med cruise and spent most of them in bed with food poisoning so didn't get to grips with much of the language

    Good - really good - to hear from you.  Have a wonderful time in the mountains.  I do hope your vista is gorgeous, not blackened.  We've been watching the cycling Tour of Spain and it's so much more beautiful than we would have imagined from our stay within four walls of a hotel room being ill

    Good to hear Janet is well.  Ian's boxing on and we are minutely inspecting his head and torso daily, greedily hoping for more and more of The Rash

    Keep happy and well.

    Lorraine

  • You have both gone through so much and know what is in store, but dealing with it is a different matter. I would be inclined to advise talking to each other as much as possible and yes crying together as I believe crying is a great stress reliever.

  • Good to hear from you Russ - I'm sure you and Janet will enjoy Spain!

    Expat xx

  • Hi elkay How are things!
    I had clicked on page three and saw you mention leaving and i was like NOOOO.

    even though i haven't spoken to you that much, i love to read your posts.

    How are things and how is Ian =].

    Im glad you both enjoyed spain . Sometimes just being in another country though not out and about activley can also be as fun

    Take care =]

  • Hi elkay,

    Thank you so much for the update and apologies for the lateness of my reply. We are in another week now so expect another treatment is looming or perhaps Ian has already had it, hope the rash is continuing to develop but steer clear of those zits!!

    I can only half imagine how it felt when the 'months' were quoted - stark reality so no wonder you are both insomniacs at times.

    Trust things are as well as they can be and look forward to your next update. Best wishes, Rodis.

  • Olah elkay, Buenas Noches,

    Yeah we had a wonderful time in Andalucia. Jan was still a bit weak after the op,  so we couldn't take much advantage of the amazing mountain walks. I got to do a little snorkelling. We caught the end of the hot drought that they'd suffered and just stayed into the flash floods and heavy rain. Luckily we weren't flooded and the motorway bridge that collapsed wasn't on our route.

    For me, the two highlights were seeing a Golden Eagle and a pair of Hoopoes. Is thatn a bit sad?

    In November Jan meets with the digestive diseases surgeon to discuss a reversal of her stoma operation.

    In Andalucia we had an incidence of what Jan described as her worst nightmare. Let's just say I had to have an extensive shower at 4.00 am and then wake Jan to suggest she might like to do the same. A reversal, if it can be done, would be a good thing.

    We're back in England and all is as good as it can be. Glad to hear that you and Ian are trucking on up 'til now.

    Russ