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..

Saturday, 25 February 2012

One Week back at Home........

So today is Friday, 24th February 2012 and I've now been back at home for a week.

It's been a really really tough week :(

On discharge from hospital the damn diarrhoea decided to make a come back - with a vengeance! I've been having to get up out of bed 3 - 5 times a night just to do bag changes, it literally is like having a tap attached to me, it just pours out.
My Palliative care nurse was on leave this week but I spoke to one of her colleagues who faxed a prescription to the GP for me for Buscopan tablets (to stop the continual stomach cramps) and also for Loperimide to stop the diarrhoea (only problem is, it doesn't actually stop it!)

Yesterday I spoke to one of the lovely nurses from Beating Bowel Cancer. They always seem to know when I'm at a really low point and ring me that day....I filled her in and we discussed together how totally shit this whole thing is. She gave me some advice re the diarrhoea tablets and rehydration without going back into hospital....to be honest for the past few days I've felt that I will end up back there sooner rather than later.

Today I feel a little better...had a light diet yesterday as the previous day I'd spent most of the afternoon throwing up in bed and Rab was in and out providing me with a clean bowl, tissues and drinks to keep me going. My husband is an amazing man - I never realised how amazing he was and I never truly appreciated him before all this. I wouldn't be able to do this last bit now without him.
But as I said, today I did feel a little better despite the continuing diarrhoea....I finally realised it's because the Buscopan tablets have stopped the awful painful cramps and this has made me feel that I can cope with the remaining ongoing symptoms for now. I'm determined to get past this bit and find a way to feel 'well' again. I'm determined to prove them wrong with what they now expect for me as a realistic time span. I still have things to do here.

Friday, 24th February was also Rab's birthday. Last night Sarah and Manolis came over along with James and Leanne and we had a lovely Chinese meal. I didn't eat too much but I did have a gorgeous Spring Roll (yummy, my favourite thing to eat ever....I even dreamed about them in hospital) and a small portion of rice with beef & black bean sauce.
Rab had some lovely presents and cards and felt just a little special I think :)  I hadn't managed to organise presents for his birthday from me this year, but Leanne went shopping and chose some things that she knew I'd like, she even wrapped them for me - it's like having my own personal shopper :-)))
Thank you Leanne xxXxx

It's now Saturday and again I don't feel as bad as earlier in the week. The cramps are definitely under control now - the diarrhoea continues unabated, so I continue to eat Loperimide like sweets :) and do bag changes by the hour!
Rab made me a lovely light lunch today of toasted cheese sandwich and tonight he's making numerous tasty side salads (to try to tempt me to eat more) and a mushroom omelette.

It has been a lovely sunny day with blue skies and a totally fresh feel to the day - this makes me feel better in myself in general and although I know I'm not out of the woods yet (by a long shot) I'm still trying to find that exit route - the one that leads me to a longer, painfree life.
I've got it firmly fixed in my head that if I can get to March things WILL get better - obviously not for ever but at least for a while.

Keep that positive stuff heading my way because it's obviously working :)

Back soon xxXxx Much love to all xxXxx


  1. Happy Birthday Rab!

    Carole, definitely thinking about you and looking forward to things quieting down for you.

    1. Thanks Eric and thanks for the birthday wishes for Rab xxXxx

  2. Sending positive vibes.....stomach cramps are crap, buscopan does help! You have a great support system, so just concentrate on you and feeling as well as you can.
    Hugs x

    1. Hi Carol,
      I've not managed to make it over to your blog lately...shame on me. Sorry, just not had the energy but I'll be catching up this week hun and hope you're doing as well as you can be.

      Hugs and love to you always

  3. Talk to anna about maybe using a high output ileostomy bag or a urostomy bag while the diarrhoea is so bad, that way you could hook it up to a night bag at night and get more sleep.

    There's also stuff that you can get to put in the bag to thicken things up, would hopefully mean less trips to the loo. Most f the companies do them, either as wee bags or tubes of granules. It works in a similar way to the stuff that they use in nappies, it absorbs the fluid and turns it into a gel like substance.

    Have they done a stool sample recently? Might be worth doing another one anyway just to rule out anything else going on.

    Hope you've been able to sit and enjoy the sunshine this weekend.

    1. Thanks Sue, all useful info :)

      Last stool sample was done just before I was discharged and like the others showed absolutely nothing. They believe it is all down to the new tumours which have upset the balance of things internally for me.
      I'm seeing my Palliative care nurse today at home and hoping she's going to have some great suggestions for me - fingers crossed.

  4. hi Carole Lets hope this coming week finds you in better health. Spring is on its way, hang in there better weather will help a bit. Take care love and hugs and prayers as always

    stef xxx

    1. Hi Stef,
      Thanks for keeping in touch hun and hope you're also feeling better?

      Yes, Spring is on the way and I honestly believe I can get 'better' at least for a while - if only I can sort out this stomach issue.

      Hugs back xxXxx

  5. Mushroom omelette! That's brave! Mushrooms don't get digested here and reappear exactly as they went in! :)

    Biggest hugs to all of you. Much love.

    Katherine xxxx

    1. LOL Katherine, the trick is to cut them up very very small.
      At the moment, everything comes out as it goes in to me!
      Thank you for the hugs xx

  6. Hi Carol I have been reading your blog for a while now. My partner has rectal cancer and had massive problems with diarrhoea right through chemo until I found out about the difference between soluble and insoluble fibres. Soluble fibres can be distinguished by the fact that they soak up water , for instance oats. Skins on fruit are insoluble whereas the fruit inside is soluble. By following this principle his diarrhoea disappeared and has never returned unless he Eats insoluble fibres then he has to take loperamide and after one dose of 10ml it is sorted.
    I know e NHS is not up on diet info as they should be, this came from my partners chemo nurse. I have researched so much on the Internet and have to say that due to his diet being based on soluble fibres he has now been down graded from stage 4 to stage 3 and has had surgery to remove what turned out to be a tiny primary tumour. He weight went down to 10 stone and since doing the soluble fibre thing he is now 12.5 stone and is fit and well.
    I do hope this helps you, I felt I just had to share this with you to make your journey a lot easier. My partners Macmillan nurse has asked me to do something for their website about this diet and since reading your blog I am now determined to do this and to help some others who may e don't know how simple it can be. I wish you well and really admire your bravery you are a very special lady. Much love Di x

    1. Hi Di and welcome to my blog :-)

      Thank you for the info - all useful and interesting. I'm so glad to hear that your partner is now fit and well, always great to hear good news with regard to rectal cancer :)

      They believe that my diarrhoea is caused by the new 'masses' in my pelvic and ovarian region - they feel they've upset the balance of things and sent my inflammation markers soaring sky high, which then seem to trigger diarrhoea. However, I'll pay more attention to my diet and see how things go.

      Thank you for taking the time to leave a comment for me. Much appreciated

      Much luv xXx

  7. Carole im sorry you still have all this terrible diarrhoea. I remember my mum taking Lomatil after her surgeries for bowel cancer, has your Dr tried that for you? im sorry if im being stupid, i may have missed something on your blog or it could be a very similar drug to what you are taking already.
    Have you tried the BRAT diet..bananas, rice, apple and toast? Im sorry again if that sounds daft but i have a friend who survives on that when her chrohns flares up.
    I wish you strength Carole, to overcome this and start to feel a bit better again soon.
    Take care
    love sally xx

    1. Sally,
      Nothing you've said sounds 'daft' - everything is relevant for me now. I'll listen and take on any sensible sounding suggestions.

      I did revert back to the BRAT diet before I was admitted to hospital, it helped after my initial surgery.
      I think this time the diarrhoea is because of the new cancer throwing things out of balance - I'm eating Loperimide like sweets and they just don't make a jot of difference.

      However I'm hoping my nurse today will be able to help me sort this out. I'll ask about Lomatil too - thank you for that :)

      Much luv to you Sally xxXxx

  8. Carole,
    Thanks for keeping us posted. You have come to mean a lot to our family over the past year. I'm so glad you have a good support system at home. I only wish we lived close enough so that we could give you more support. Know you're loved and appreciated. Give Rab our love and a belated Happy Birthday.
    Love... Steve and Carla

    1. You guys also mean a lot to me. I received the most lovely card whilst I was in hospital....

      James and I were talking and we said how weird is that! First time I ever heard about Steve I was in hospital having my surgery and James printed off Steve's comment to show me...then I get admitted to hospital again and I get a lovely card from Steve and Carla - lovely :)

      Thank you for the birthday wishes for Rab too - much appreciated
      Much love always XxXxXx

  9. Dear Carole
    Much love to you and good thoughts and vibes coming your way....

    Love Alli XX

    1. Thank you Alli - all good vibes gratefully received and sent back by return

      Hugs xxXxx

  10. Dear Carole,

    perhaps another little tip from a fellow ostomist, maybe useless, but I know we clutch at all we can.

    I use Loperamide syrup instead of tablets, it is so much better and more quickly absorbed.

    It might or might not help, but we have to pass these things on.

    Brave lady you are. xx

  11. Hi Carol
    Sorry I forgot to mention that my partner also is prescribed LIQUID Loperamide as the tablets were passing through him before they could take effect which all makes sense when you have diarrhoea. Since taking the liquid version it acts brilliantly. Keep up that positive attitude I am rooting for you xx

  12. "I'm determined to get past this bit and find a way to feel 'well' again. I'm determined to prove them wrong with what they now expect for me as a realistic time span. I still have things to do here."

    Damn straight, Carole. Keep fighting!

    Sending positive thoughts your way,


  13. Carole, been thinking of you often. Sending good vibrations your way from USA.....Aaron

  14. Dear Carole,
    I have been following this blog for a few months and have also 'seen' you on Cancer Research UK chat rooms. I wish you strength and peace and as much joy as you can find in the time you have.

  15. Praying for you Carole. Please give Carole a pain free and peaceful journey God.
    Maggie xxxxx

  16. My wishes for you to get well soon. Keep writing.

  17. "I'm determined to get past this bit and find a way to feel 'well' again. I'm determined to prove them wrong with what they now expect for me as a realistic time span. I still have things to do here."

    Darn straight, Carole! YOU STILL HAVE THINGS TO DO HERE!! Give 'er heck!

    Thinking of you,


  18. Hi Carole,
    Just letting you know that I am still checking, and thinking of you. Hope that you feel well enough to up date soon. x hugs