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..

Monday, 14 February 2011

Three months post surgery, so why am I not 'better' then.....?

Now it's time to talk about me again....I've sort of been avoiding this until I'd spoken to my family in depth because it's not something I want them to read via my blog first.

Since my surgery, and even before my surgery, I was managing to keep on top of things and convince people that despite all the crap (deliberate pun) I WAS coping really well, I tend to joke my way through life at the best of times but it's a cover up for how I'm really feeling.
Since my surgery I literally feel as though I've been hit by a steam roller, flattened into the ground and left for dead!

I saw my GP last Wednesday and we had a long long chat - lovely man. He said that he feels that now is the right time to admit that some counselling sessions will help me through the next bit of this journey. I agreed.
It was something that had been offered way back around last May but I resisted and decided I could sort myself out - but the truth is, I can't...and believe me, I have tried.

My GP feels that the combination of my struggle to get results reported, plus the continual ongoing pain from the wound area that hasn't healed is just a recipe for disaster. I cried, he listened and he told me that he feels that a weaker person would have been on their knees by now after what I've been though.
Now you see, this is actually weird for me to hear because I honestly think I'm being a wimp and that there are so many people worse off than me.
I find it hard to view myself as 'strong' or 'resilient' I'm just someone that HAD to find a way to deal with cancer and that doesn't necessarily make me a 'strong' or 'brave' person in my view...and although I've been sort of dealing with it all, I've not managed to see the light at the end of the tunnel yet.

A large part of the uncertainty has been the continual struggle to get results confirmed by the hospital - I finally managed last week to get my PRE treatment CEA levels (which were '5') and then when I asked for my POST surgery results 'Sorry, we didn't do them'...
WHAT the F***!
How am I supposed to relax and start feeling confident that you lot did 'get it all' then?
How am I supposed to 'move on' when you can't tell me F**k all really?
I still haven't had the post op path reports or received ANY other test results in writing - everything has been verbal and only when I've pushed for answers continually.

I'm angry with my post op care, (lack of results being confirmed) I'm angry that despite doing all they said, my wound is still so bloody painful, I'm angry that I'm still exhausted most days and I'm angry at myself for being angry.
So in short I'm just angry and I don't know what to do with this anger or how to stop it.
So counselling is the route I'm now going to use to see if I can reach the light at the end of that long tunnel.

My GP arranged to do my CEA levels last week for me - and he's happy to do them every three months (for as long as I want) as he feels that it's way too long to wait until June.

He also confirmed that he personally is in 100% agreement with me (and my Oncologist) that there isn't necessarily a huge benefit in doing adjuvant Chemo with rectal cancer. It's the luck of the draw really - some people it works on, others it doesn't so he is happy that on this one I made the right decision for me.

We discussed my symptoms:
Are you sleeping okay at night?.........No
Are you feeling your energy levels rising? .....No
Do you feel that you are coping with day to day things....No
Are you irritable and stressed at times?....Yes
Are you noticing an increase in your appetite?...No
Do you feel okay one minute then very sad the next?...Yes
Are you prone to tears when alone?...Yes
Are you avoiding social situations?...Yes
Can you get through this without intervention now?...No
Do you feel suicidal?...No

Therefore we decided that a batch of sessions will be useful. I get my results for my CEA tests and other blood tests on the 22nd February. Maybe then I'll feel a little clearer about things but right now I'm living in Limbo-land and it's not the best place for me (or anyone else living with me either)!

Funny thing is that before the surgery I would have thought it would be the colostomy that pushed me into the direction of needing some counselling - but it's not. The one thing I don't need to talk about and don't feel depressed about is that - strange how things turn out eh!

Much luv to all and as always thank you for the ongoing support xxx


  1. Hi Carole. My goodness you've carried a load. Let's hope you can leave it all at the counselor's office.

    I finally accepted prescription sleeping pills so I could have some chance at success in returning to work full time. I'll probably use them through my remaining chemo treatment. My doctor assured me that this particular drug is designed to help me turn off my brain and fall asleep, though it won't keep me asleep. It's supposed to be out of my system by morning. So far it's helping me keep a fairly regular sleeping schedule. Is something like this a possibility for you?

    So sorry about your continuing pain in the bum. That alone has to be draining your physical and mental resources. Maybe it's time you renamed this blog so your bum can heal. :-) How about "Carole's bottomless wisdom and wise cracks"? or maybe "The End of the Line"?
    And then there's "A Bum's Road to Recovery". In any case it wouldn't be a Pain in the Bum. Who wants a label like that? (Note: This was meant to be more silly than serious. Are you smiling?) It's late and I already took my sleeping pill. Maybe I shouldn't be typing a comment under the influence. :-)

    If you want to be a wimp then be a wimp. Just know that it's only by comparison, which isn't fair. What you or any of us do on a daily basis, under the circumstances in which we act, is truly amazing. Especially to someone watching from the outside. For all our feelings and frustrations we continue to function as best we can, getting through the day with whatever we can muster. That takes heart and determination. What should bring us to our knees doesn't because we don't let it. That's not wimpy, that's winning!

    I think I'm typing while half asleep, so I'll end here. Someday it would be nice to just sit and chat. Let your anger move you to answers. I'm sure Rab and DJ have great reflexes if they need to duck.

    Double love and hugs for you today.
    Steve xx

  2. Sweetheart, you are suffering from depression. Wholly unsurprising in the circumstances, but that doesn't make it any easier to deal with.

    Depression is an illness of the strong: those of us who 'put a brave face on things'; those of us who 'cope'. I know you wouldn't immediately associate the two. I certainly didn't. But if you thing about it, it does make some kind of sense. Eventually, something has to give!

    I can't tell you how to recover from it. I think everyone has to find their own path. Counselling may certainly help (but don't expect to get an appointment immediately -although if you do, grab it with both hands!!). You may also be offered medication: take it. Modern anti-depressants are not addictive, so there's no need to worry on that score.

    I've got a couple of books on the subject that might help a bit. I'll dig them out and bring them up next time I come.

    Love ya! xxxx

  3. Dear Carole
    There's a few of us bloggers struggling at the moment.
    I should be jumping for joy at the results of my AFP blood test but I feel like a limp dishrag. Off to the docs tomorrow to see if I can safely take something more effective than paracetamol to enable me to function properly as a Mum, wife etc. It would be so nice to feel human again.
    I can't function at work properly, can't exercise properly, can't socialise fully, still can't put on weight, can't do my college course.
    Called my neighbour to cancel my lift to Tai Chi - it's too painful to use my arms today. Her husband had just helped me in with our wheelie bin and commented I don't look at all well, sigh.
    I want to change all the above to CAN DO, but it's so bl**dy hard isn't it.
    Since all this began I've only been weepy twice and the first time was under the influence of a hefty dose of opiates! T sat me down last week and while we were discussing mega things such as transplant options I'm fine, but mention these debilitating aches and pains and I'm sobbing into his shoulder.
    Sending you a large box of tissues and some hugs ((()))) xx

  4. Tons of love coming your way Carole.Do what is right for you whatever anyone else thinksYou have been there for so many of us now take time for you.I hope things take a turn for you soon ,I hate to think of you being like this although it must be the weather or something as so many of us are going downhill lately.Stay atrong my darling.

  5. Dear Carole,
    I'm so sorry that you are struggling so much at this time. Any one of the things you are dealing with could drag a person down and you have a whole list that you are trying to combat. I'm glad that you are adding to your list of resources to draw on by trying out counseling. Hopefully you can see someone who works with and is familiar with the issues cancer patients have to face. The counseling sessions won't necessarily fix things for you, but they can give you tools and some direction so that you can better help yourself. I'm a little surprised that they haven't previously offered you some type of medication for depression since it is one of the commonest side effects of cancer. What those medications can do is give you a little space and resiliency so that you can sort yourself out. Just know that there are a lot of us rooting for you and that you are in our thoughts and prayers. Thanks for being you... you are more than I think you realize. We love you. Carla

  6. Hi Carla. You are right: Carole is SO much more than she realizes. Tis why she's my friend; why we are still friends after 20 years; and why I love her so very dearly. xx

  7. Thank you all for the lovely supportive comments...

    No matter how 'down' I feel you guys can always give me a lift - and I do really appreciate it. xxxx

  8. Carole, time now to really start to look out for No.1 - You have been so busy looking after us lot that you have been burying the emotional side as if it can be dealt with another day... Now is that day, give something back to yourself dear friend. And yes I can almost write your response myself...I will do the same!

    Much Love

    T xxx

  9. Hi Carole,
    You have been very strong....you are a formidable woman, sending you all my positive vibes!!
    Take care, and thanks for you comment on my question on cancer support uk, much appreciated!

  10. Hi Carole

    I'm really glad you're getting help from a counsellor...and I really hope you find someone who is decent and who can comprehend everything you have been through recently - physically, mentally, emotionally...you are going to be one hell of a challenge!
    I don't believe you are depressed, I think you are completely worn out and worn down, emotionally drained and physically hammered. You are a strong, brave person who has been tested to the limit, but because you are strong and brave, you will come out of it...slowly and carefully, and with a bit of external help. You know there's light at the end of the tunnel - you just need to be able to see the bloody thing, then take a few steps towards it.
    Please blog a bit more about how YOU feel, so all of us cyber-counsellors can offer you a bit of encouragement.
    Much love as always
    Shents xxx