About Me

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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Tuesday, 20 December 2011

Thanks to all those who've messaged me, either via the blog or Facebook or email or text to ask how things are going. I know I've needed to do an update for a while now but haven't been in the right frame of mind - or had enough relief from the pain, to do so.
Tonight I've set myself the task of bringing you all up to date.

Last Monday I met with my Oncologist, Dr L - who is the same Oncologist I had last year for my pre-op chemoradiation. I like him and trust him totally and feel confident with any decisions he makes on my behalf.

He told me he feels really genuinely sorry to be seeing me again and really hoped that the last time he saw me, back in January 2011, would have really been the last time he needed to.
We discussed the spinal mets and he said he's quite taken aback by this development and it was completely unexpected. Told him I agreed completely, it wasn't what I was expecting either!
The current plan is that he has arranged for new CT scans to take place (this Wednesday) on my spine, thoraxic area and also my left hip to check to see what's currently going on. After he's viewed these I'll be meeting with him again in early January to 'discuss developments'. I told him I'm still quite chemo resistant and he's fine with that - but we'll make final decisions in January once we both know exactly what's happening for sure.
He told me that in his opinion chemo could potentially possibly provide me with some extra 'weeks' but it would come at a price. This is all based on my severe reaction back in June 2010...so we're back to that decision about quality vs quantity and I've made it clear that quality is my goal. Extra time being slowly poisoned is still not really negotiable for me at the moment - BUT it will depend on what he says in January when we meet.
We had an open and honest chat and he leaned forward, looked me in the eye and said 'I'm really sorry that I can't fix you Carole, I just can't stop the cancer'..I told him I do know that this is the case and my only real interest is to sort out the pain and see what options are on the table that probably don't involve chemo.

Today I had a follow up appointment for palliative care and pain management. The lovely Dr P has emailed a couple of her colleagues on my behalf and asked about a spinal operation that involves placing a 'cement' type product into the spine to try to mend some of the damage. They will review my bone scans and see what they think. I'll let you know what their opinion is about this once they've got back to me/Dr P.
I discussed today with Dr P what my life expectancy could be now - she said it's so difficult with cancer because things can change literally overnight - however at this stage of things she'd suggest I have "long months and short years". She then said to be blunt in the region of between 9-18 months would be a good estimate at this stage.
I want to be around for Dj's 13th birthday, if possible, so that gives me hope that that might be achievable (if things don't change overnight) :)

The pain has been a pain....not much more to say about that. Still tweaking the med's around to see if we can find a balance that works for me. Next appointment in mid January.

I'm meeting with Dr L, Oncologist again on 3rd January - then have a colorectal appointment on 4th January.

For now, everything is going on the back burner because it's almost Christmas and I intend to have a lovely time with my family - enjoy the festivities and make any decisions after the holidays.

Many people are in my thoughts at this time of year - especially my special friends Rose and David, whose families will be spending their first Christmas without them.
Also special thoughts going out to my lovely friend Kev over in Western Australia who will be facing his first Christmas without his wonderful wife, Joan.

Catch up soon xXx


  1. Oh Carole, I don't know what to say. I'm sorry this is what you are faced with. I totally understand your resistance to a chemo plan. Quality of life is what truly matters. Good for you for self-advocating and making choices that are right for you. I'm glad they are looking into a procedure that might ease your discomfort a bit. I hope that works out. Enjoy the holidays with your family and have a lovely time indeed. You deserve it. January will come soon enough. My best to you.

  2. Hi Nancy,
    Lovely to hear from you :)

    Yes, quality is what matters and I will enjoy the holidays with my lovely family and friends. Everything else can just wait now.

    My best to you for a Very Happy New Year filled only with good things
    Much luv as ever xXx

  3. Hi Carole,
    I always find it difficult to say how I feel, but i'm pleased everyone is doing everything they can for you, this Christmas will be very special to you, it's lovely that you have such a loving family to share it with,

    All my love, Lynn x

  4. Lynn,
    You always say the right thing so never worry :) You are a massive support to so many, even whilst you've got your own ongoing worries so I just want to say Thank you to you.

    I am very glad that I have my lovely family to share this Christmas with and we will have a good time. Over the Christmas period the only thing that matters is my family.

    Lots of love back to you Lynn and I hope that you and D also have a nice time together.
    Mum will be on your mind lots I'm sure, but she'd be so so very proud of you hun
    xxXxx Much luv always xxXxx

  5. Oh Carole, I really don't know what to say....on the one hand I'm glad you've posted as I've been worried about you, but on the other I feel so sad that you find yourself in this horrid position!!! I hope they can do something to help the pain situation-that must be extremely wearing for you.
    I agree completely with the quality v quantity debate. My biggest sadness about my Dad's illness was that he spent the last 12 months of his life made really ill by the chemo, and what for-maybe an extra month of life in which he felt dreadful!!?? Hmmm...makes no sense to me!!??
    I'm glad you feel able to focus on enjoying the Xmas period with your family. I'm sure you'll make it very special!!
    With that I'll wish you and yours all the best for the festive season - rest assured you'll be in my thoughts!!
    Chezzy x

  6. Well Carole, I had better get up and visit you in the new year as you owe me a Thai Green Curry. You have always been there for me with the sensible words and sometimes a kick up the arse when I have needed it...As you know I have my own struggles which thankfully for me at the moment are a slower pace than yours, and whilst this is not a race things can change quickly like you have said...this is your forum, your legacy which you will continue to update for years to come!

    Much Love dear friend

    Tony xx

  7. Dear Carole,
    I read your blog and felt an overwhelming sadness. I am so sorry you have to go through this. I hope you find the place that you can be pain free.
    Right now it is almost Christmas.
    I wish you and your family "Peace & Love and all good things for your Christmas celebrating..

    Love & Best Wishes......Alli Xo

  8. Carole,

    I wish I could change things, but alas, we do not have the power to do so. I think of you often, and marvel at your strength and courage. Even though you and I have not formally met, I feel that through your words and expression, I have come to know a valuable friend. Please know that you are always in my prayers. Wishing you a Christmas filled with love, laughter and family. Sending warm hugs.
    Love, Rose Mary xoxox

  9. Dear Carole
    Like Lynn I also find it hard to express myself,especially when you have so many longstanding friends on here.
    But I follow your blog and find you amazingly brave and honest.Your two sons are very lucky to have you.
    Hope you have a lovely Christmas with all your family.
    Very best wishes

  10. Merry Christmas Carole,

    I wish you happy times with your family and loved ones and at least a few pain free moments that would allow you to forget about what ails you. Sheri loves the times when she can imagine this is all just a bad dream.



  11. Hi Chezzy,
    Great to hear from you hun, especially at this time of year when you've got your own thoughts and emotions to deal with.
    Re quality vs quantity - thank you for your input on this because you've experienced first hand exactly what I mean.
    For extended 'weeks' it's not an option for me at all, it's going to have to be extended 'years' or it's not a consideration.
    Being ill with cancer is one thing but I'm not prepared to do the ill with treatment thing as well.
    Will be thinking about you and yours Chezzy and hope that Christmas is bearable for you all this year
    Hugs xXx

  12. Hi Tony - it's a Thai Red curry on the menu, definitely not Green...

    You've always been there for me too Tony - it's a two way street with us. I'm planning on being difficult and proving them all wrong anyway. As we say 'Accept the diagnosis but not the prognosis' :)
    Talk soon hun xxXxx

  13. Hi Alli,
    No sadness for the rest of this month - it's almost Christmas and time to put cancer to bed for a while. I'll tolerate the pain and we can worry again in the New Year but NOT for the next week or so.

    Wishing you and yours a very Happy New Year Alli and wishing you also NO more pain.
    Hugs and much luv xx

  14. Rose Mary, it's always lovely to hear from you.

    Likewise I feel I've got to know you well through your blog and I've also got to know your lovely Rachel well through your powerful writing.

    Christmas is a time when we look back and reflect as well as think about the New Year approaching.
    I'm sure you will be doing much reflecting and look forward to reading more about Rachel and yourself in 2012.

    Peaceful Christmas Rose Mary to you and your family. Wishing you happiness in the New Year

  15. Mimi,
    Everyone is welcome here on my blog, whether they've been here from the beginning or just found me. We've all got something valuable to add to each others lives, I reckon :)

    Thank you for your Christmas wishes - sending them back by return to you and yours.

    PS. I'll remind Dj he's lucky to have me the next time he's driving me to complete insanity (the way only 12 yr old stroppy boys can do) LOL.
    Much luv xx

  16. Hey Eric :)

    Wishing you, Sheri and the children the most lovely Christmas and New Year ever.
    Who knows, maybe this next year will be the year you both finally get some good news.

    As for the pain, I'll top up my painkillers with alcohol this year and see if that works - lol..either way, cancer's not going to be the boss for the next 10 days or so - I am :-)

    Hope Santa brings the kids everything they've hoped for.
    Love to you both xxXxx

  17. Hi Carole I was really glad to see an update, but so sad to read it. I love your attitude to Christma in spite of the pain and everything- we did the same with my mum last year- and we did have many moments where we forgot, we ruled the cancer and we had a really special and fun time. Wishing you a really lovely festive time with your family, all my love Alice xxxxxxxx

  18. People's response to cancer treatment seems to me as random as people getting cancer in the first place. Maybe some day medics will have discovered how to 'tailor-make' successful treatments for us all, but unluckily, not yet.
    You were the first person, Carole, to direct me to the art of blogging, for which I am eternally grateful.
    I wish you could be lucky enough for the chance to continue blogging for many years to come. You have a way with words and a way of being open and expressing emotions that many of us envy.
    Here's hoping for a miracle for you to spend many more Christmasses and birthdays with your family.
    Sending you love and best wishes through cyberspace.
    Fiona xox

  19. Hi Carole,
    I am so sorry to hear the 'prognosis'.
    You have been a huge inspiration to me, and will continue to be, I am sure!
    Have a great Christmas, and enjoy your nearest and dearest.
    You will see DJ's birthday, and be posting pictures and comments on his wit and ability!
    Thinking of you as always.
    Your friend Carol
    Hugs and stuff!

  20. Carole,
    I'm so glad you are back with doctors you like and trust! In this frustrating battle, good support can make a big difference even if it is mostly on a psychological level . I just wish you had had it all along.
    Merry Christmas to you and yours. May the next week be filled with family, friends, laughter and love. We love you and wish there was something we could do to change what you are dealing with. Best Wishes Always...

  21. Hello Carole,
    My name is Derek and i am Carols husband. I have read your entries and also know what my wife is going through. You are two very special ladies who don't deserve this, but you face up to it with remarkable optimism. I feel sure that if you two had met then a beautiful friendship would have resulted. Although Carol faces this with a smile i know also she can sink into a dark place, she would never let anybody see that and i am sure that you are the same. So from an admirer keep it going our love reaches out to you and hope that providence watches over you both. All my love to both of my special ladies. Derek Hubbard. xxxx

  22. hi dizzie
    you truly are a wonderful woman and i hope and pray for some kind of miracle for you as you deserve one,so try to stay strong and i hope you can get some relief over xmas at least,so take care and good luck with everything. jeff alias (dad1929) hugz to you all.x

  23. Carole, so good to hear from you. I lost track of your post for a while, but, did not lose you in my thoughts. I wish the news were better. You are very courageous and bear this burden better than most. Have a good holiday and I shall do better at staying in touch.
    USA friend.

  24. I love you , you are a very brave strong person, i never knew so wrapped up in my own crap sorry. I hope 2 see you very soon xxxxxxxx Have a wonderful Christmas and a Magical new year. ;)xxx

  25. Hi Alice,
    Lovely to hear from you again.

    'We ruled the cancer' is such a great statement, I feel that will be the title of my next post - thank you for that :)

    Hope that you get through Christmas this year without too much sadness and instead have some good memories you can recall of mum.

    Catch up in the New Year hun xxXxx

  26. Fiona, always lovely to hear from you my blogging buddy :)

    I'll be doing my best to stick around and annoy you all for as long as possible :)

    Hugs back and wishing you all a Merry Christmas and very happy 2012 xxXxx

  27. Carol,
    You are also a huge inspiration to me my lovely friend. No-one could ever accuse you of not dealing with things in the most optimistic ways ever. I'll be in touch after Christmas but in the meantime, enjoy the break with your family and I hope you all have the best time possible.
    Much luv xxXxx

  28. Dear Carla,
    Wishing you and Steve and the family the most wonderful Christmas ever. This time last year things were very different for you both so I'm hoping that this year you will be able to relax and go with the flow.
    Happy Christmas and wishing you every good thing possible for 2012 xxXxx
    PS. Give Steve a big hug from me on Christmas morning please and tell him he's always in my thoughts xx

  29. Derek,
    It was really lovely to find a comment here from you. I felt very emotional reading that knowing that you are also dealing with your own worries and fears at the moment.
    I'm absolutely positive that if Carol and I had met in 'real life' we'd have been great friends but I feel that we are anyway.

    I'll be in touch after Christmas but in the meantime wish you both the best Christmas ever full of memories and love.
    Hugs to you both xxXxx

  30. Jeff,
    Thank you for stopping by and for leaving a comment as I'd been a little worried about you recently. Good to see you around :)

    Lets hope that 2012 brings good stuff for us all

    Much luv to you and your family Jeff - have a lovely Christmas and keep the turkey out of the way of that puppy :))

  31. Dear Aaron,

    Nice to hear from you again and I apologise for not emailing you back sooner. I did receive your last message but with everything going on I completely forgot to reply.
    We'll be better at keeping in touch next year :)
    Merry Christmas and a very Happy New Year Aaron to you and the family

  32. Searenna Lovely girl,
    Don't worry about not knowing - we all have our own stuff going on around us.

    James sends his love and yes, we'll catch up in the New Year
    Have a great Christmas with the family and Happy New Year hun

  33. Our thoughts and prayers are with you aunty. I hope chrsitmas went well. And no matter what they say, things happen, estimates change, people get better.

    They, the doctors, are people just like you and I. They get things wrong all the time. And maybe they have your situation wrong also.

    Love you so very much xxxxxxx

  34. Hey Carole - just catching up properly with news today. I HATE the answers you've been given, but at the same time I'm glad at last that you actually HAVE some answers after so many months of uncertainty, fobbing off, and frustration. I just wish that the nice Dr. L COULD fix you - but at least he's been honest, kind and considerate - everything you deserve. If this is the road you have to go down, then I'm glad you have some decent, caring people in the medical profession to hold your hand along the way...

    ...not to mention the hundreds of hands from your fellow blogger and forum friends from around the world who are here with you every step of the way.

    Thinking about you every day - and, of course Dj and the rest of the family.

    Much love as always

    Lisa xxxxxxxxxxxxxxxxxxxxx

  35. We seem to be keeping in some sort of tandem now Carole, I had my week of palliative radio to my brain and the tumour round my spine causing my left hip and leg agony so I'm hoping for good results. I have a new type of pain that breakthrough methadone doesnt work on, more muscular, but I've stopped needing the meth top up for day to day, just my usual dose.

    To be free from pain relief would be awesome but i'm not sure thats possible. My aim was my son's 18th which is just over a year away - I am realistic that is unlikely but as mothers what else would we aim for? They were both with me for a couple of days, my only gift I asked for. Making memories.
    May we both have more time and no spanners in the works regardless of what anyone expects.

    Lisa xxx

  36. My dear Carole,

    I have been dreading reading the prognosis that I feared you would get. My Joan had the same matter of fact apology when the oncologist was unable to help further.

    Nothing I can say, or do, will help. My tears are the only physical connection I have with you.
    You are a brave lady. I wish I lived closer to you to drop by and have a regular chat.

    My best wishes,


  37. Dear Kev,

    I thought of you Christmas day and raised my glass to you hoping that you'd find a way to cope with the 'festivities' and keep your tears at bay somehow.
    I've said this to you before, but I'll say it again - just so you know I mean it - your Joan would be so so proud of you Kev and you give me great hope for Rab's future once I'm no longer here.
    PS. I love your new car, it's amazing and a very necessary treat that you totally deserve :)
    Much luv always xxXxx

  38. Lisa,
    I'm always pleased to hear from you hun and hopeful that your latest Radiotherapy will ease the discomfort at least some...

    Keep hoping to make that 18th birthday Lisa - sometimes it's simply the hope that keeps us going and many more unrealistic goals HAVE been made by people who were told they couldn't get there.
    Always in my thoughts Lisa - keep making those memories brave lady xXx

  39. Hi Shents,

    Strangely enough, the news was easier to deal with than the constant uncertainty.
    It's woken me up to do the things I've often thought about doing but not yet got around to. So the current plan is to find a way to get this pain under proper control then get on with living for as long as....

    The one thing I can say for sure about this whole mess is that I've met some truly lovely people along the way - people I'd never have come across without my diagnosis and I'll be forever grateful for that.
    Some of you have become true friends and I know you'll also be there for Rab and the boys when I'm not here to boss them around anymore :)
    Much luv to you all xxXXxx

  40. Carole, I have popped over from Kevin's blog. I had tried once before but for some reason was unable to bring your post up.
    I am sorry you have been given such a sad prognosis and live with so much pain. It is not fair. I don't know why some of us have been able to make it through the surgeries, chemo and radiation and others are not. If I had only one wish it would be to rid the world of this horrid disease. I love knowing you have such a loving family who support and are there for you. Family and friends are such a blessing. I know you are a realist but please remember it is not over yet, keeping you in my thoughts and prayers......:-)Hugs

  41. Hi Bernie,

    Lovely to find you here on my blog :) x

    You're right, it's SO not over yet, not by a long shot and I'm keeping on, keeping on.

    Thank you for your thoughts Bernie, much appreciated