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, 21 February 2012

Back home after my NHS trip........

As you all know I was struggling with acute diarrhoea, raised temperature, aches, cramps and pains from 14th January. I kept thinking I could cope at home, I would get back on top of things eventually but then it hit me on the afternoon of 31st January when I looked in the mirror that if I didn't get myself to hospital I'd be found dead on the floor at some point. I then made the decision to get properly sorted out and rang my GP who insisted I go to Accident and Emergency for a full assessment.

I arrived there with Rab around 4pm and from that point on, everyone provided me with exceptional care and compassion.
To be honest initially I thought they'd keep me a day or so, get some fluids into me and send me home as a bit of a time waster with a dodgy upset stomach....however on admission they took bloods from me and it was found that my inflammatory markers were running at over 300. A 'normal' person has inflammatory markers around 0-5, so mine were apparently 'impressive' ....LOL. That's one way of looking at it I suppose.

For the first few days of admission they were completely puzzled with what was going on with my body. The acute diarrhoea, cramps, temperature raises were all pointing to something being very wrong but they couldn't work out 'what' was wrong. I also then started having periods of constipation. It hit me at one point that I had EVERY symptom of bowel cancer - that was almost amusing considering last time around I had virtually no symptoms at all.
I had at least 6 different teams involved in my care from General medical to Oncology and everyone of them tried to go the extra bit to help me. My care was amazing from arrival to discharge. My nurses on the ward were simply brilliant - so caring, compassionate and they made a huge difference to how I coped being in there for so long. Some of them would just come in, sit on the bed and chat. They didn't dress it up as anything except a 'shit situation' - they listened, hugged me and said I was 'amazing, so strong'..it all helped because when you're being bombarded with crap news every day you definitely start to lose the ability to be 'amazing' and 'strong' anymore.

Anyway, numerous x-rays, MRI's, CT scans later I was told that just about everything had changed....firstly T10 in my spine had now completely crumbled and the option of bone cement was off the table. It would now need to be a completely different type of spinal surgery to replace parts of missing spine...

I was also told that new 'masses' had been discovered in the pelvic region (damn, that was fast - nothing was in my pelvic region in December when I had detailed scans)...the new masses are suspected of being a completely NEW primary cancer - possibly Ovarian...another huge blow.

Then it was found that my right kidney had stopped functioning because a 'mass' had decided to grow around the tube between the kidney and the bladder shutting it down completely. They talked about a drain into an external bag and I was so pissed off about this. During the op they managed to get a stent into place to open up the tube without the need for an external drain or external bag - so at last something went right.

Prior to all this new info, the Oncology department had spent time talking me into doing a course or two of Chemo. They assured me that it could be 'tailor made' this time and that they could protect me from the horrendous side effects that I'd suffered last time around. However, without two functioning kidneys no-one was prepared to even think about Chemo - so that was the first thing that needed fixing.
Then of course if the new masses do turn out to be a brand new primary, Chemo is probably off the table completely simply because they can't really whack me with two different chemo's at the same time.
Surgery to remove any new masses also probably wouldn't be an option as it would take me too long to recover.
It felt like I was being continually whacked with bad news for a period of about 8 days in there. Every time a Doctor walked through the door it was to say 'I'm sorry but.........'........

I got to the point where I just couldn't take any more bad news and flipped completely when they tried to send me down for yet another scan. My lovely nurses on the ward and also the Stoma nurse, Anna, tried everything to protect me from any further bad news for the next few days.
Anna arrived by the side of my bed in the middle of my complete mini breakdown and got me through the next hour by simply hugging me and listening.
I told her I KNOW this will kill me now and I'm just not ready to go yet, she agreed that yes, it will kill you Carole - there's no way back from all this crap now and it's not fair but sometimes you've just got to accept that things are bigger than you..........I cried, she wiped her own tears away whilst keeping me on a even keel for a while and left me in a better place than I'd been in when she arrived. Thank you Anna - sincerely...xx.

Since then I've had lots of  mini breakdowns - fairly short lived as I tend to pull myself together afterwards and carry on but they are there in the background. Simple things set me off.
I'm so so angry with this bastard cancer now....I took everything it threw at me, tried to fight back and get back on my feet only to deal with mets a fairly short time later. I never ever had a 'clear' scan - I never ever had a break from it all. THEN it decided to throw a whole new primary cancer at me - as I've said recently....I'm NOT a quitter but I do feel fairly defeated now.

However, I've now been released from hospital and I'm back at home being taken care of by my lovely husband, Rabah. For a while I didn't know if I was going to make it back home again - I really did feel that ill when I was in hospital, but I'm still here. He's determined to get me eating again, he's determined to make me well and get me back on top of this.
I'm determined to try my best - simply because I'm not ready to leave Rab or my boys just yet. I'm not stupid, I know it will end up not being my decision to make, but I can at least try.

You all know by now that I'm not a religious person - but I'll take any prayers you want to send in my direction. I'll take the positive thoughts, candles and vibes and hope that everyone of them helps me in my ongoing struggle to stay here longer.

Thank you all for caring about me and my family - I need you to know how much we appreciate it xxXXxx


  1. Well as many positive thoughts as i can muster coming at you now, i too am not religious but i seem to have a plethora of people around me who are and i think it is the personal goodwill that they feel towards me that helps, so like you, bring it on whatever floats your boat.....ultimately it is all love and you are loved very much i can see by so many.
    I think you can grasp hold of this however hard and choose your way through, you have a huge spirit.
    xx Hazel

  2. Carole, Prayers, Candles, Vibes coming your way, and so much Love. xxxxxxxxx

  3. Thoughts, prayers and all my strength is yours Carole

    Love always

  4. Dear, dear Carol, I am a stranger to you but I feel as though I know you as a very strong, kind, wise, brave woman. I have followed your journey from the start and so hoped that you would have a good outcome. I will pray for you and your family Carol, I will pray with all my heart to my God. I am not religious but do feel that some mighty power made us and this universe and I will pray that you will stay with Rab and the boys for as long as possible. I will pray for peace and comfort and joy in your family.
    Love Maggie xxx

  5. You are always in my thoughts and prayers, Carole, as are Rab and the boys.

    Much love
    Katherine xxx

  6. My darling, how could we not care about you all??? Just not possible! Love you beyond words. XXX

  7. Dear Carole i popped in tonight to see how you were doing as i had missed you and wondered how you were. This disease is such a Bastard :/. As ive said before here its taken all my family apart from my son. You remind me of my sister, she somehow always seemed to be able to get back up again after every piece of bad news she was given. We used to say her song was that..`i get knocked down and i get up again` we shared alot of laughter and tears Carole.
    I really am so upset for you and your lovely family.. but I am so glad you have them, my sister only had me as her partner couldn`t cope with her cancer `nice` :/ at least he had a choice!!! she didn`t.
    Let your lovely Rab take care of you and let him build your strength up a little.
    I wish i there was something I could do..if there was I would gladly do it. You and your family do NOT deserve one second of this.
    I don`t believe in God as such im more a universal force kind of person and tonight I shall be asking for help/strength and gentle healing for you.
    Much love to you
    sally xxx (hugs)

  8. I am crying too now, but these tears are for you Carole, not for me. That is important because a lot of times we all cry for ourselves really. You truly are amazing, I am sure you have been told before! Stay comfortable and let your willing loved ones nurture you. All my love, across the miles, Juanita xx

  9. been reading your blog for a few months. I am not religious but I am sending you warm wishes.

  10. Dear Carole,
    It is so good to hear from you again! Steve and I had a feeling that something was terribly wrong, but even we would never have guessed at how bad things had gotten for you. We just know how much we love and appreciate you and wish that all of this could have turned out differently for you and your family. You are always in our hearts, thoughts and prayers. And, even if you don't believe it can happen, I plan on giving you a big hug, in person, when it is finally my turn to cross over to the other side : ) ... so be watching for me! I only hope that it won't be to soon for either of us.
    Love Always, Carla

  11. Hi Carole,
    Well, I really don't know what to say, I am sending all positive vibes to you at this time.
    You are a very strong, incredible and amazing woman.
    If there is any thing, anything at all that I can do, you know where I am.
    Thinking of you.
    Hugs X

  12. Hi Carole You know I'm not the best with words but I just want you to know you are always in my prayers I pray you will have strenght to cope with all that get thrown at you, and that you have good times with your lovely family. Love to the whole family Stay strong for each other
    love, hugs , good vibes , prayers and anything else that helps
    love stef

  13. Dearest Carol
    I am so very sorry you are going through this. I was worried about you and sent you an email about a week ago. Thanks for letting us know.. You are definitely in my prayers and I will light a candle for you daily...
    Please take care and know you are in my thoughts.

    Love Alli XX

  14. I am gobsmacked at the speed of this. You are coping, and I marvel at this. I do pray for you and for your family, and will continue to do so.

  15. You already know but want to say it again and again, I Love you sis. This thing is bigger than you now but given that you have never been clear of this in the last two years, I have to say you are the bravest person I know and always trying to protect others. Please if there is a god out there, protect my sister and give her a break from all this pain. xxxxxxxx

  16. My thoughts and prayers are with you and hope you can enjoy the life you have left, and do spend every waking hour with your children.

  17. Thank you all, sincerely, for the lovely supportive comments...usually I'd try to answer individually but I think you'll forgive me at the moment if I just give this one big 'Thank You' comment.

    I am overwhelmed with the continuing support and love that you show to me and my family.
    My blog will eventually be turned into a book for the boys and they will always be able to look back and see how much people, sometimes complete strangers, cared about us.
    Thank you all from the bottom of my heart xXx

  18. Just wanted to send you more love and thoughts and a healing hug to add to those you've already received Carole to help you and your family. Words are not enough. Karen xxx

  19. Hi Carole - I have come to read your blog through my old school friend Alison Selfe, who I am following on Facebook. I am a cancer surviver so consider myself very lucky but I have still experienced the fear and the feeling of impotence cancer brings.

    I think you are amazingly brave- much braver than I ever was - and I wish you all the luck in the world. If you feel up to responding to me, perhaps you could tell me how you have managed to keep so sane in the face of this cancer crap?

    1. Thank you for your lovely comment....

      With regard to your question about remaining sane...Hmmm..truthfully, I don't know.

      I think having a dark sense of humour definitely has helped me, being able to laugh about some of this crap when really I should have curled up in a ball and banged my head repeatedly against the floor...having tons of support from family, friends, cyber friends has all helped.

      Having said all that, they bombarded me in hospital daily for about 8 days with pure bad news and I broke at that point, temporarily.

      I guess the only answer is that cancer takes so much from us that I'm determined that it won't change my outlook mentally.
      Physically it has, emotionally I'm fragile at times but mentally I just won't let it win.

    2. Thank you for taking the time to reply. I understand what you are saying and agree that it is the best way to approach serious illness - but many of us crumble under it. I hope your blog is read by many other cancer sufferers as I believe they will gain strength from it.
      By the way I'm not remaining anonymous for any reason other than I can't work out how to post otherwise!
      I hope you have had a reasonable day.

    3. I've definitely crumbled from time to time ...there's no way I'm 'brave' or 'strong' all the time. I just try to be, especially around Dj. I know if I fall apart then he will too - and we can't have that :-)

      I too hope that people find my blog in the future, I also hope it doesn't scare the pants off them though as my experience with this has been 'rare' right from the start really.
      When I was first diagnosed I found it hard to find any first hand info here in the UK - hence the blog.

      The way to post a reply without being anonymous is to set yourself up with a google account and use that to log in.

  20. Always, always in my thoughts. All my love, Alice xxxxxxxx

  21. Dear Carole
    I just wish I could have had access to your honesty and guidance when my mum had bowel cancer, which was a long time ago now, but more recently my Dad suffered with it too :(
    Your words are more helpful than you realise. When we start out on this so called `journey` which is more like some kind of emotional bomb exploding :( whether we are people who have cancer or carers for our loved ones, we are all looking for information and help..You have provided this Carole in such an honest way, your words are so heartfelt and full of incredible strength.They are our guidance and our only way of understanding how our loved ones really feel,and I thank you for that.

    I know sometimes the word brave can be annoying, my sister used to get fed up with it, but...I do think you are a brave lady and your strength is helping your lovely sons and husband to cope with this.
    I will never, ever forget the way my loved ones coped and i will always remember that their strength helped me to cope.
    I was very young when my mum passed away Carole but her love and her courage is endless and timeless.
    You are the reason your boys are such wonderful people.
    Keep safe
    Much love
    sally xx