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, 14 July 2011

My address is 'Limbo land' .............:-)

Thanks to everyone that has either phoned me, text me, emailed me, messaged me on here or other places or simply been thinking about me...all that positive stuff flying around must do some good eh :-)

I had my MRI on Saturday and then my meeting with my Consultant/surgeon on Monday. The outcome from the CT scan was that there is a question mark around an area on the left lung BUT it's 'too small to call' at this time. There are changes there - however it may be something or it may be nothing.
Plan is to re-scan in 3 months to see if there's any growth...so my lung area has now moved to 3 monthly CT scan monitoring and we are going to take a 'wait and see' approach. I've already received my appointment for this on September 19th....

My MRI results were then reported the following day, Tuesday.....there is an area of soft tissue around the original tumour site that has raised concern/interest BUT it's too early to tell if it's inflammation from the Radiotherapy burns OR if it's new tumour activity.
Plan here is to rescan with MRI in 6 months to check and see what's happening and again 'wait and see' approach.

'My name is Carole and I live at number 3/6 WaitandSee, Limbo-land'.........:-))

I had a bit of a moan (ok, quite a BIG moan actually!) at work on Tuesday afternoon (thanks Hazel for listening and for the good sensible advice), came home & kicked a few boxes around, felt sorry for myself for a few hours - then decided to say 'F*ck it..what will be, will be'...
I've done what I needed to do to get rid of this damn thing and if it insists on coming back then I'll deal with that when I need to.

Right now I'm going to just get on with things and try to forget about what 'could' be happening until my next scan/s.

Consultant feels that my shoulder & rib pain is not caused by anything tumour related so quite probably bone damage caused by Radiotherapy - possibly a type of osteo-arthritis from RT treatment.
He's writing to my GP to inform them that I need to see a bone specialist now to see what we can do...he has said however that RT damage cannot be reversed so it may be a case of learning to manage the pain.

Okay that's it - back to my gardening now :-)

Much luv to all


  1. Great attitude... we often advise people that waiting is the worst part and that once there is a definite diagnosis and plan things will be easier...I wont say this to you as you already know that! :-) To understand this and forget about it for the time being will be tough but I guess the best thing to do... I suggested a PET scan via my last text, would this not confirm cancer activity sooner?

    Much Love

    T xx

  2. Oh Carole I really do not know what to say except that I am so happy that there is nothing blatently obvious. Isn't it strange how we come to feel totally differently about the waiting?
    The damage from the radiotherapy is something I am learning more and more about.
    Always in my thoughts and sending healing thoughts your way. Love Chez xo

  3. Knowing you had a consultant review on Monday and then not seeing a post my assumption was, if it was good news you would have posted 'hurrah, all ok' straight away. And that no post meant something needing mulling over before you felt ready to post. So, welcome to limbo land! On the one hand, regular checks are good as you feel reassured that you have close monitoring and action can be taken if needed asap. On the other hand, each check, each wait for results, brings the whole 'what if' scenario to the front of your mind. I dread my tumour marker tests most, but wouldnt give them up for anything! How contradictory.
    It's normal to worry, it's ok to have a moan and kick a few things around. Now do your best to file all those unanswered questions away in a drawer at the back of your mind and put summer and gardening, family and friends and having fun at the front!
    Big hugs ((0)) Fiona

  4. Hi Carole.
    Sorry to hear about the question marks....
    Limbo Land....yep....how long will you have to live there?
    Another 3-6months at least I should imagine.
    Sadly, there is b*gger all that can be done to be more sure in order to 'act'!.
    Wait and see...............hmmmmm, how often will you have to hear that?
    I think that your positive attitude is fantastic, and I will certainly try to emulate it.
    You are a very brave and admirable woman.
    Always thinking of you.
    Love 'n' stuff!!

  5. Oh well my lovely . . . as the famous philosopher Doris Day once said: "Que sera, sera".

    Next year, plant yourself a couple of autumn fruiting raspberry canes, and a few pea plants. Also, bell peppers would probably be useful additions, too.

    Love ya.

  6. Hi Carole, would love to be able to help you, and i'm sorry i'm I can't advise you either, but I am thinking of you, just wanted you to know that. I sometimes think i'll just stay quiet cos whatever I say aint going to help you much, but i'll always listen and be hear as a friend, take care, Lynn

  7. O Carole love i`m sorry you didnt get better news, lets hope it is just inflammation from the RT, at least you know that you havnt been imagining the pains, just take things easy love, and i hope the doctor can help with the pain in your shoulder.
    Well done love for reaching your target for the hospice you did great, love you loads Mum and Dad xxxxx

  8. Hi T,

    I intend to push it to the back of my mind because thinking about it for the next two months isn't going to change anything one way or the other. I'll keep an eye on any symptoms, but other than that I'm simply ignoring little 'c' for now :)

    Got the summer holidays around the corner and going to concentrate on that and my tomatoes - lol.

    PET may be an option IF there's any growth on next scan but right now apparently wouldn't confirm one way or the other....so they say anyway at the moment.
    Much luv back xxxx

  9. Hi Chez,
    yes, nothing obvious is an improvement on what could have been said :)

    I'm still researching 'stuff' on RT damage and will pass on anything interesting that I come across.
    Keep being tough Chez, you've got Dr Amazing on your side now :-)
    Hugs xxxx

  10. Hey Fiona :)

    As you say, regular checks are good and at least this way I won't be feeling forgotten about eh...every cloud and all that :)

    I'm looking forward to the summer hols, hopefully might manage to get out a bit more than we did last year....
    Hugs back - hope you're still resting when you need to?

  11. Hi Carol,
    The big advantage to living in Limbo-land is that I have such nice neighbours :)

    Really hope that your scan goes well on Monday - will be thinking about you and hoping for an excellent result.

    You are one of the bravest people ever Carol - you are so optimistic, cheerful and I'm in awe of you.

    PS. If you get to move out of Limbo-land, can I have your strawberry bush please? Just dig it up and throw it over the fence - lol

  12. Hey Lou,

    Planning ahead with my garden is a great idea...
    I've got a few small little pepper plants that I grew from seeds - but don't think they're going to do anything much this year.

    Next year peas, raspberries and peppers it is then :)
    See you soon hopefully xxxx

  13. Lynne,

    Lovely to hear from you and you don't need to worry about whether what you say helps - it helps when we just know that others are there for us..
    It's not the words/advice etc that matters really, just the contact with other people who know that it's really crap at times.

    Thank you so much for your very generous donation to the hospice as well Lynn - much appreciated..

  14. Hi Mum,

    At least it's not the worst possible news eh :) and yes, at least now I know it's NOT in my head...
    Whatever it is, they'll keep an eye on things now and I can just forget about it all for a while.
    Hopefully see you both soon, love you both lots too xxxx

  15. Happy Gardening Carole!!

  16. Hey Eric,
    Great to hear from you...

    You've not updated your blog for a while now?
    Have been keeping up to date with Sheri's blog - but it's nice to hear from *you* too...:)

  17. Lol!
    I am in awe of you...I think that you are the brave one....enough of this mutual admiration! Lol!
    May take a trip to London and bring a strawberry plant!!!!!!!
    Take care!

  18. I was guessing that is why they weren't going for a PET...There is some consolation that they are keeping a close eye on things now.....Much Love T & F xx

  19. Carole, Sending good positive thoughts to you, whatever will be, will be you have the most amazing attitude through all this, Much love xxx

  20. Carol,
    Anytime you find yourself in London - with or without your (my) strawberry plant I'll meet up with you..
    Good luck for Monday xx

    Sarah - thank you xx

    Tony - Yep, I'm definitely being 'watched' now...I always get my own way in the end eh :)

  21. Oh Carole, I just went through a bunch of tests myself recently. Mine turned out ok for now. Sometimes "for now" seems so elusive. I'm sorry you are in limbo-land. It does get old and stressful I'm sure, but your attitude of "I'll deal with it if and when" seems like a good one to me. My best.