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..

Wednesday, 8 June 2011


It's been a funny ol' week really - funny strange not hahaha funny (although there have been some haha moments - thanks Hazel/Christine)

I felt really tired this week again but knew I would have felt tired if I was doing 3 hours a day or 6 hours a day at work - it's an 'overall tired', not caused by working or anything - just a general tiredness that hasn't really left me since the operation...I admit that I've started to get frustrated with it all now.

Felt quite 'down' this week but couldn't put my finger on exactly what it was at the root of it - then tonight realised it's 7 months tomorrow that I had my op, 7 months ago when they told me 'in three months you'll be recovered and feeling well again' (yeah! right!)...

Just for the record, the wound still hasn't fully healed and my shoulder is still bloody agonising. My breathing never did return to normal after the surgery and I swear some days I feel worse than I did before - however, I'm also aware of the fact that had I NOT had the surgery, I'd be on the last few months of my life right now...so it's all about putting it into perspective and weighing it all up I guess.
Whichever way this ends up going, the surgery will have, at least, prolonged my life and given me the chance to, at least, attempt to be free of this cancer...and who knows, maybe they DID get it all..Yes, who knows? Not me yet - which is why sometimes I think it all gets to me and I end up having these 'down' weeks.

It's also one year ago this week that my Chemoradiation started - the most painful part of all this treatment was (for me) the pre-surgery Chemoradiation treatment.
I spent my 50th birthday having Radiotherapy and crying. I'd always said I'd do something special and memorable on my 50th (just didn't think it would be full on cancer treatment - lol)

This year it's my 51st - the plan was to celebrate and make up for 'missing' my 50th but in all honesty I'm too damn tired to even think about celebrating, too worn out to think about anything beyond the current day. And this is why I'm frustrated, I'm supposed to be feeling better each day (?)..I'm supposed to be 'on the mend'(?) so why then do I feel stuck in limbo still?

Part of this is because I've had no contact with anyone from my colorectal team since December - since my stitches were removed they've forgotten all about me (well, that's how it feels anyway).
I have this 'check up' appt on Monday morning - although I have no tests booked at all - I'm not really sure how you check someone post cancer without any tests of any kind?
Suggestions on the back of a stamp I think......

Friday, my actual birthday, I'm meeting up with Lou for a nice lunch. James & Leanne will pop over during the evening and I already have a little pile of cards waiting to be opened - so that's all nice stuff to look forward to.
Dj is off to Germany on Sunday (School Journey for 5 days) and he's really excited about it - maybe Rab & me will manage to get out for an evening (if either of us has the energy):-)

Other news is that I've had my chat with the boss and decided to stick with the 6 hours a day, 3 days a week for this term. We will then review this just before the summer holidays and make a final decision about permanent hours then.
I've been very lucky to have excellent support from my employer's during this - some other people I've had contact with have been treated really badly during their absence from their work whilst having treatment, many people have commented that their employer's have made it as difficult as possible for them in order to try to get them to resign their post.
Mine have been the opposite - they paid me as long as they could and have made it as easy as possible for me to return. I'm very grateful for that level of support....

Still want to win the lottery and give up work completely though :-))

Catch up soon xx


  1. Hi Carole,
    Not really sure what to say...I can relate to all that you have said....I have no answers, (seems nobody does, and that is part of the issue!).
    Like you said..is this the new permanent normal?????
    Anyway, hope you win the lottery..lol! (But I'm first! lol!)
    Take care.

  2. Somehow saying "things will get better" just doesn't have the same impact anymore (not because they won't mind you, but just because you say a phrase too many times, and it becomes somewhat obsolete)

    So instead I shall say: A woman fell asleep on my shoulder on the train yesterday, and I didn't have the heart to wake her. Went all the way with her to Vauxhall before she awoke from her slumber. Awkward few seconds before she jumped off. I thought I would get off the next stop in order to not prolong this awkwardness...before going back the way I came.

    Hopefully a smile at least from you aunty....stay strong, remember everyone is here for you, and, enjoy the next few days with uncle Rab. The future is not ours to see, so do what you can with the present.


  3. Carole, you have all the answers right there in your post.

    As we both know, whilst many around you believe you are cured the fact is you are far from it. At least the fear is there that it will return and that fear remains until you feel it okay to let that fear go...

    In addition we have to feel comfort and reassurance that our care team are looking out for us and have our back...how the hell can you have that comfort and reassurance when you have not been contacted and don't appear to have a clear plan to track potential reoccurance!

    The two are closely linked and so it is understandable you are depressed and concerned...I reckon it is time to hear that Rocky tune in your head and do what you teach others to do...you need a care plan that is comfortable to you and one that I believe you will be seeking on Monday! Frankly you don't really need me to tell you that as you already have it in hand....

    Trying hard now
    it's so hard now
    trying hard now

    Getting strong now
    won't be long now
    getting strong now

    Gonna fly now
    flying high now
    gonna fly, fly, fly...


    Catch you later

    T xxx

  4. Carole dropping by to say I have been offline for over a week so will be back to read more asap. Stay strong lovely lady♥

  5. Hi Carole,
    I'm sorry you have been feeling down, but hey, I also think it's perfectly understandable. Your post solidifies further my belief that we as 'cancer people ' should not be expected to act or feel a certain way. I recently had the anniversary of my bilateral mastectomy and it brought back a flood of memories. I relate well to much of what you write here. Anyway, hope you have pleasant birthday. Somehow getting older now seems pretty darn great doesn't it? Happy birthday!

  6. Carole you should be having follow up appointments every 6 months and a blood test for markers (if for you markers are an indicator, this isn't always the case) and scans usually 6-12 months after surgery. I had more scans because of other surgery and other scares in my first year post op, but you should perhaps ring the onco's secretary and say you want to see him in clinic for follow up, there are guidelines to cancer care. I slipped out of the loop ironically last year, it was only because I was in pain that they I was seen again - just an oversight but it happens.

  7. Don't worry Carol, if I win I'm sharing - lots to go around :-)

    Chez - lovely to hear from you as always. You also stay strong and take special care xx

    Hi Nancy,
    Yes, getting older definitely has it's perks :-)..Thanks for the birthday wishes xx

  8. Lamia,

    You are such a kind girl, always thinking of other people and a real credit to your mum and dad...love ya tons - big hugs xxxx

  9. Hi Tony,
    It IS about the fear - *not* the fear of cancer, coz I'm not scared of the bitch, but the fear that it's still there and I might get conned into thinking it's gone.
    I can handle knowing one way or the other but I can't stand this guess work thing :-(

    I'll try to get myself a good plan in place once I meet with them Monday eh :-)

  10. Hi Loopy,

    Great to hear from you, and great to read your blog update yesterday.

    I'm not sure how much use my 'markers' are as they only ever reached '5' at the height of things.
    After surgery, when the GP did them again for me, they'd only reduced by 1.3 so wasn't great news really BUT with nothing to compare it to, was a difficult call for the GP.

    I want more than a chat every six months - and I'll settle for an annual scan once I've had the 1st one (*like 'now') if it's clear.
    I'd also still like to get hold of the PET scan results on a CD that they promised me, my pathology results, and anything else that can help my GP manage my care inbetween 'chat's' at the hospital.
    Doesn't feel like too much to ask for really :-(

    Ringing the Onco team is an option if I don't get answers next week - problem is that because I didn't do the post op chemo they passed my care back to the colorectal team at a different hospital (surgical/colorectal team).
    I will get somewhere though Lisa, I have to - simple as that.

  11. Carole
    There's not much more to add, as all your lovely friends on here have pretty much said everything. I really hope you manage to get somewhere on Monday.

    I just wish I could be meeting you down at the Tea and Tipple this afternoon for a scone, a Fentimans lemonade, and a good old chat to try and make you feel slightly better.

    So instead, let me just send you a load of hugs and a bucket full of good wishes and love for your birthday. Is it today, or next Fri?

    Lisa xxxxxxxxxx

  12. Just in case you missed it......
    Happy birthday to youuuuuuu!
    Happy birthday to youuuuuuuu!
    Happy birthday, dear Carole!
    Happy birthday to youuuuuuuuuuuuuu!!!!!!!!!!
    x x x hugs!

  13. Hi again Carole,
    I posted a birthday message for you, but I don't know if it went through. It didn't ask for any verification at the end like it usually does. Anyway if this is a repeat I'm sorry. I just wanted to wish you a happy day and let you know Steve left you a special birthday message on his blog "Butt if Not".
    We love you and wish you well always.

  14. Happy Birthday.

    Sneaky thing.

    Only found out because other people have posts on other blogs about your birthday, lol

  15. Aha! It's today! Happy birthday dear friend!

  16. Happy Birthday Carole Dear Friend xxxx

  17. Good Luck on Monday sis. I know you won't let them all off lightly. You are not a cancer number and need individual treatment according to your needs! And I think you need a scan. Why should you have to feel like you are limbo. You now need something to help move your thoughts on.

  18. Good luck tomorrow Carole. Will be thinking of you and hoping that you can get a few answers, a bit of reassurance and a plan to help you move on. xxxx

  19. We will be with you in spirit tomorrow, Carole. Go get 'em!