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..

Thursday, 20 October 2011

So.....what now?

Yesterday when I got home from work there was a message on my ansaphone from my nice colorectal nurse L...she had tried to contact me to discuss the recent bone scan results.
Immediately I knew this was going to be dodgy news simply because if it was good news she would have emailed me rather than called...however, the voice of reason starts to think 'Maybe she just wants to offer advice regarding the pain' ..then the other voice starts hearing the conversation that is pending.

Anyway to cut a long story short, I got very little sleep - was up at 4am with a stinking headache and of course the now familiar pain in the back driving me to distraction. Then at around 9.30am this morning L called me and we discussed the scan.

The outcome is that I have bone metastases (spine T9 and T10) - probably from the original rectal tumour BUT she stressed that this is very very very unusual as there are no lymph nodes impacted anywhere in the body, joints are unaffected and although it's possible for rectal cancer to move to the spine, it's extremely unusual for it to go to the spinal region without going somewhere more common first.....
So, to make sure all bases are covered she is requesting an urgent mammogram just to check that there is no sign of Breast cancer.
L explained that bone mets (to the spine) are more common with BC rather than rectal cancer - the mammogram is therefore to make sure there definitely isn't a tumour in that area...The recent CT I had on the chest area didn't pick up anything in the breast area - but then again, it didn't pick up the spinal mets either - but the mammogram is precautionary more than anything.

Putting all that to one side, it changes very little. Bone metastases cannot be 'fixed', I'm no longer considered 'curable'.... but we discussed what we can do to regain some quality of life.
The short term plan is urgent mammogram and L is contacting the other hospital involved in my care to organise some Radiotherapy sessions to alleviate the pain I've been experiencing. My care team will be discussing me on Monday to decide on next steps.

As to the long term plan.......the simple answer right now is, I don't know.  I do know that my long term survival statistics have now dropped dramatically - I also know that right now I'm still here and that life isn't infinite for any of us..

How do I feel? Pissed off with it all to be honest - but I DID expect this result.
I knew that the pain in my rib/shoulder area wasn't a 'normal' pain, it wasn't a run of the mill aches and pains type of pain so I knew it would either be bone mets or the other possibility I was looking at was damage from the Radiotherapy (*but that would have been more likely to have been joint issues rather than mid spinal column).
I did what I always do when faced with something and researched beforehand....spinal mets from rectal cancer only affect a tiny amount of people, in the region of around 4% or less - and that small amount of people who are affected by bone mets tend to become so after numerous tumours move into the liver/lungs/pelvic area first - so I was a little hopeful that despite my concerns it might turn out to be nothing serious.
No such luck eh :)

I don't believe in God but if I did, I'd definitely now believe he's got it in for me for some reason.....

Bastard cancer!

Catch up soon xx


  1. I refuse to make any comment regarding your results until you get the results from your mammogram. Regardless of what you say about it being just a precautinary measure....I cannot believe this just yet.

    And though you may not believe in an omnipotent being. I do. And I am going to go have a word with mine.

    Any news...let me know.

    Cancer, what a bitch.

    Love you aunty xx

  2. You are in my thoughts Carole. Cancer is a bastard! :(

  3. awww carole hun i am so sorry u are having to go throu yet more my thoughts are with u hun xxxx

  4. Oh Carole, there are no adequate words to express how I feel for you. Wishing you the very best that can be...

  5. Carole,

    tears in the keyboard! Fight the good fight my friend and keep the bastard at bay.


  6. Gutted. Is there a possibility that the 'somewhere more common first' has been the lungs, where the bast**d is trying to remain vague and undetectable apart from showing up as a small 'something'.

    I really wish you could have a break from all this.

    Fiona ((o))

  7. Dear Carole
    As Angel said,there are no adequate words.
    Very,very warmest wishes

  8. There isn't a god in my universe either. What the hell the universe is about, I really don't know.

    I just hope you don't get too much of the "everything will be OK in the end" because this is contrary to your own instincts. As a doctor I can only agree with your outlook and expectations about what the future may hold for you.

    In one respect things don't change: none of us will live forever, whether we already have an illness that may kill us in the end or whether we think we are hale and hearty.

    At nearly 65 I think I am in pretty good shape. But I am well aware that in a month from now change may have it that I will have received one grave diagnosis or another from my doctor and in another year I might be dead from it. The point I am making is that the more successful of us goes on living life as fully as we may while we still have it. What I would wish for you is that you find the strength to do so.
    I have met some remarkable people making their final journey in full knowledge of what the end would be. Some have allowed me to hold their hand, metaphorically, as they did so. I was staggered at what some of them managed to achieve.

  9. There's not really a lot to say that is constructive or helpful at this moment in time other than what has already been said a few times...bastard, bastard, bastard cancer.

    Despite this bastard news, I know that you'll be rolling your sleeves up and bravely tackling this bastard cancer once more...This time, though, in addition to your wonderful family, you have a huge army of friends and followers near and far who will be here to hold your hand the whole way.

    Not sure I've ever used the bastard word 6 times in such a short comment before, but I feel it is completely justified on this occasion.

    Rolling my sleeves up with you Carole

    Much love as always


  10. Hi Carole,
    Words can in no way express what I feel for you just now Carole . My thoughts are on you daily as I check your blog but this is one pice of news I did not want to see and confess I did not see it coming although you as always seem to have been well researched on what potentially was happening. I know you will keep us up to speed on what can and will be done and I hope that there are now more positives to come out of this for you. Really really gutted for you Carole and just wish so much that I could wave a magic wand and it would just be a bad dream.

  11. Bastard Cancer, nowt else does the trick

    T xx

  12. Positive thoughts headed your way Carole. Travel, live life, have fun; don't give cancer the upper hand until the absolute last second!

    Sheri does not know when the end will be but we know it is out there. It would be a better sign if we can get the tumor growth under control.

    Wishing you good treatment results, tumor control and a long fight!

  13. Oh sis, 24hrs after your call to give me the news, I feel a sense of calmness whilst reading your blog update. You have given me a strength that I didn't think possible as I'd feel a sense of shame if I fell apart now.
    You are the one dealing with this and as a family we will get through without dramatics and show all the support we can whilst you try to make your decisions along the way.

    So now I hope the mammogram is clear so you can concentrate on the spine area and get some pain relief asap.

    Love you loads, little sis xxx

  14. I'm in total agreement with Shents..........that bastard bullshit they call cancer!!!!!!!
    Try to keep your pecker up (I know you will be trying!),
    Sending lots of love and hugs your way,
    Paula. Xx

  15. You know you are in my thoughts/prayers/feelings - whatever you like to call them.

    Huge hugs, much love xxxx

  16. Thank you all for the supportive comments. They make such a difference to how easy or difficult this all is at times.

    You all know me well enough by now to know I'm not a quitter, I will keep going, I will keep on keeping on until the very last.
    "It ain't over til the fat lady sings" ...so if you ARE a fat lady - don't sing for me eh :)

    I know I said I don't believe in God but I know lots of you do.
    I'm not offended by any offers of prayers which I understand do help some people to feel that they are doing something.
    So, although I personally don't have that belief, I am and always have been grateful for all your prayers for me and my family

    Hugs to all and again, thank you xxXxx

  17. Hi Carole,
    Just read your blog and i'm so sorry to hear your news, I don't really know what to say, but couldn't not say anything, your in my thoughts, take care
    Lynn x

  18. Carole,

    I know your views on religion and really appreciate your respect to those that do believe. You would imagine that the blind faith is being questioned and I can tell you that absolutely there are loads of questions being asked.

    Much Love dear friend

    Tony xxxx

  19. Hi Carole,
    I am with Shents and Paula on this.
    There is nothing that I can say.
    You have been through so much. I am really so sorry to hear this news.
    You know where I am......if there is ANYTHING at all!
    As always, you are in my thoughts.
    Sending you all the strength in the world and positive vibes to you and yours.
    Loads of hugs!
    x x x x x x x

  20. Hi Carole,
    Carla and I are stunned with this news. We know we are the 'far' part of 'friends near and far', but we are here with you as well. Wishing we were nearer if only to sit and share a cuppa. (Hey, you might make a Britt out of me yet!)
    Much luv and all our support,
    Steve and Carla

  21. I'm sorry to hear your news, and because I believe, I'll do what I always do, which is pray. Because I don't know what else to do. My best to you. ~debby

  22. Just happened upon your blog. Your a very strong woman. I can only imagine your grief at the thought of leaving your sons way too soon. I have know more than a few folks who thought they had months, only to see those months grow into year and years. Yes I have even seen complete remission when no one thought it possible. I am praying for a positive outcome for you.

  23. I used to know an old man that jumped his garden gate every day from being a child, he said the morning he could no longer jump the gate he would then class himself as old, he never stopped jumping that gate and died of a sudden heart attack at 73 so he never got old, your garden gate is your bedroom door and tomorrow is another trip out of it.

  24. Oh carole, I really don't know what to say to you right now. O F**k sprang to mind but I doubt it's of much help to you. I'm in agreement with your regulars above. This is an absolute bastard of a disease and I truly hope you keep up the good fight. One (sort of) positive thing is they've at least identified the source of your pain and can now work on effective relief from that. If it wasn't for your strong, forthright personality, the bone mets would probably have been left unidentified until there was nothing left to fight for. Someone meek and mild wouldn't stand a chance in the current medical world. Carol you are in our thoughts and we hope you find some respite from your pain soon. Big hugs (((())))Nicky xx

    Ps, you ask about Stevie from time to time, well he's considered cured from the cancer but he's currently suffering from the effects of his Ileostomy reversal because the silly bugger won't sort his diet out! He is very lucky though. His dad on the other hand has recently been diagnosed with terminal liver cancer.... Bastard disease xx

  25. Hi Nicky,

    I hope you don't mind me asking a question...what cancer did Stevie have?


  26. It was rectal Tony (sorry for hijacking your blog Carol!). I've posted a message on your blog T. Nicky x

  27. Hi Nicky,

    No worries, am glad to put people in touch with each other.
    I think I know why Tony asked and hopefully he'll be able to help Stevie with a few things :)

    Crap news about Stevie's dad Nicky :(
    As so many of us have agreed, bastard cancer!

    Keep in touch hun xxXxx

  28. Hi Carole,
    Just letting you know that I still 'pop in' to see how things are, always thinking of you, and sending you positive vibes, thoughts and everything else I can think of !
    Take care.
    Carol x