About Me

My photo
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..

Sunday, 5 December 2010

I wanted to do a Positive Post .....

but it's hard.......:-(

I'm not finding too much to feel all that positive about as yet - but as everyone keeps telling me, it's early days yet.

So how are things then?
Things are pretty much the same really. I'm still quite tired but not as exhausted as when I first got out of hospital. I have limited energy and moving around is getting slightly easier. Going up and down stairs is now relatively simple - as long as I remember to support my stomach when doing this.
I'm taking no pain relief now during the day as the wound is now more a discomfort than pain issue.

District nurse has been again today and confirmed that there appears to be no infection whatsoever around the rectal wound - which means all should be okay to remove the stitches on Wednesday. Yay! At last I'll be able to have a long soak in the bath - that's something to look forward to.

Eating is still a battle, not so much because I have no appetite now but more because just about everything makes my stomach feel unsettled and shortly after eating I get pains in the colon which go on for hours - sometimes all night.
The only way I can describe this is 'trapped wind'..... Imagine that you have the worst stomach pain caused by trapped wind...the answer is to leave the room (or if you're Rab/Dj - stay where you are) and do the biggest fart you can muster!
Well, here's the problem of course - I can't fart, so the wind stays trapped and continues to cause pain and discomfort until IT is ready to leave via the Stoma. Last night I was awake from 3.58am to 5.45am just walking round the front room rubbing my tummy and hoping for a blast of air at any point. It didn't happen so eventually gave in, took some paracetamol and went back to bed. Grumpy and tired when I woke at 8.45am this morning.

Some people have said it's trial and error with food but the truth is that currently everything (apart from Sugar Puffs) causes this trapped wind pain - and I mean everything.
I'm trying to motivate myself to eat and have definitely felt 'hungrier' this last week, but then knowing that whatever I do eat will cause pain is yet another reason to try to eat very little.

I'm not sleeping as much as before during the daytime hours now. My weekday routine is to get up at 7am with Dj, sit with him whilst he gets ready for school. He leaves the house at 8am and I tend to have a cup of tea and go back to bed around 8.30am until about 11am. I then stay up and awake until bedtime - so definitely not as sleepy as when I first got out of hospital. I was sleeping more than being awake at one point.
Weekends are different, I get up around 10.30am and then stay up - although yesterday I had a short half hour nap during the afternoon.
If the truth is known though, I'm only able to stay awake until bedtime because I'm doing so very little - being awake is an achievement in itself!.....
Today Rab has done all the housework, hoovering, changed beds, washed up, taken Dj out for some lunch, later on he'll do the ironing for school and work tomorrow - I've managed to get up, have breakfast and shower.
I do feel guilty that he's doing so much and also working full time but I just can't really help yet.
He says 'Just relax, it's fine' but maybe I'm conditioned to feel guilty?

My lovely sister, Sarah, is now here in the UK and she's also been looking after me - along with Rab, Mum, Dad, James, Leanne and continual offers of help from Jacqui, Carrie, Nayla, Hazel and numerous other people - all so appreciated.
Sarah arrived last Sunday and has been over here cooking, ironing and keeping me company - telling me it's okay to cry, it's fine to feel crap about all this and that no-one has the right to tell me that I should be feeling 'grateful' or 'relieved' - which is good, because I feel neither.

Actually I feel like a petulant child - I'll tell you how I feel....... It's not fair, I feel ripped off, my body feels violated, I have zero self confidence now, the bag makes huge embarrassing gas noises when you don't want it to and no noises when you need it to, my whole colon area is uncomfortable and sore, I no longer enjoy food, the Stoma never seems to stop producing more and more crap (even though I'm eating very little), I have no control over basic functions of my body any more, the wound area is numb in places and it's becoming obvious that they have cut through nerves which have affected the 'feeling' there, I have 'phantom pains' in the rectal area, the stitches around the Stoma are sore and irritating, the bag system is just horrible - it stinks when I change it and is just so hard to deal with emotionally (not physically) and I don't want to hear about how bloody lucky I am!

Maybe the next post can be a 'positive one' eh :-)

Oh before I forget, Arsenal top of the Premier League after their win yesterday - now that's positive of course!


  1. I've been following the blog of a lady in the USA. Not because she has a similar story to me, but because of her ability to use the words I struggle to find to describe how she feels, how a lot of us probably feel. Here's what she says about the struggle to feel positive:

    "For most of us, after surgery is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.
    We are kind of in an after-hurricane state. During the storm we fought and struggled and worked to survive, now we are surrounded by the aftermath of the storm, the scattered pieces, the need for reconstruction.
    Another sort of frustration many of us have is listening to others say how lucky we are to have received treatment, to have not died of our cancer, to have survived the surgery, survived the chemo. We are expected to be happier, more humble, to have more gratitude, to value our lives more, to appreciate living more than those around us. Aren't we the luckiest people in the world?
    The truth is, sometimes we wonder why those who have never experienced cancer - those who have never had to fight the battle - don't hold themselves to that same standard, or actually to an even higher one. They've received all of those same blessings without having to struggle or fight or face the storm. They are truly the lucky ones, the blessed ones, we often feel.
    It's not that the people around us don't want to understand or try to help, it's just that in some ways they can't relate to us as they haven't been where we are. That's why those of us in the cancer community need each other"

  2. Oh Carole - you're right - it's so difficult to find positives when your whole life has been turned upside down...and no-one, absolutely no-one can make you feel less negative until your own body and your own head starts to accept the situation you're in...and that really is going to take some time.
    I'm imagining that at the moment - if your feelings were put on a set of libra scales, then the negative side would have a bloody massive big grumpy elephant sitting on it. Your job is to find enough positive things to put on the other side to get that fat elephant off the ground. You MUST find at least one positive thing a day - however small - and put it on the scale. Over time, hopefully there'll be enough weight to make a difference.
    I know I haven't helped - I've just waffled on really. Its horrible not being able to help.
    Anyway, just know that I'm thinking of you, and trying to send you any little positive I can to help you tip the scales the way we all want them to.
    Much love
    Shents xxx

    PS Wish I supported Arsenal. Bloody Newcastle were hopeless today!

  3. Have you tried peppermint oil in the bag..helps big time with any smell, just a few drops. get it from Boots.

  4. Thanks Shents...the grumpy elephant scenario made me smile and that's exactly what it's like really....I shall go to work on that elephant first thing tomorrow and everyday try to find at least one thing to balance those scales out.

    You didn't waffle at all...I found it helpful. Thank you xxxx

  5. Hiya Fiona,

    Wow! that hit a nerve! I can relate to every single word she wrote..

    Thank you for posting that for me, I don't feel so ungrateful about it all now :-)

    Much luv xxx

  6. Hi Anon, :-)

    I will try Peppermint oil, thanks for the reminder.
    The bag doesn't smell until I change it (bit like changing a baby's bum I suppose) but once the bag is removed I'm 'very' aware of it.

    I'll give Peppermint oil a go and see if it's more tolerable....

    Any tips for removing excessive build up of very painful gas? :-))

  7. Are you following Steve Chamberlin's blog? His wife has just posted that his ostomy bag (is that the same as the stoma bag, I'm not clued up on this) is 'burped' to get rid of the gas. Does that sound possible or at least something the stoma nurses offer help/advice on?
    For quite some time I found it painful to eat and my insides hadnt been poked around like yours. I could feel food going all the way down my oesophagus (probably the NG tube had made it sore?) and there was a sensation of an airlock but I couldnt burp. Do you find liquid gentler than solid to take? If so, how about liquidized food in small amounts.

  8. Carole - if I've made you smile, then that's worth at least 5 ounces on the positive side - so you've got a head start for tomorrow.
    Loved Fiona's quote.

  9. Hey Carole,

    I have been sitting here wanting to give you a kick up the back-side in order that you 'snap out' of the current frame of mind...I want to tell you there are people far worse off and that you should just get on with it and stop moaning...

    However, I can't as there is nothing I can say that will make you snap out of it...I know how you feel and whilst my current situation is different I know how it feels to actually want to feel 'normal'..this Evil Irene (Irinotecan) is not good...the worst is the Diarrhoea, how I wish I had a stoma as I have just spent the past 2 hours warming toilet roll on the bathroom towel rail...Bring back Stanley all is forgiven!!!

    As far as the wind...try yoghurt, buttermilk, probiotic...there is a simple NHS leaflet which I reckon you probably have somewhere but if not here it is...


    So Carol, no kick up the arse just a kindred spirit or pain in the arse, that's me...oooh me farmers!

    Much Love

    T xx

  10. random word generator was tednob...weird!

  11. My dear Carole, for me it is OK if you struggle to find anything positive to WRITE ABOUT these days. As I follow your journey I want nothing more than for you to mend my friend. This is hard for you! When you are ready, you will begin to find relief which will make life so much easier for you.
    Stay strong and know that 'this too will pass' as my late Mother told me regularly.
    Always in my thoughts sweetie xo

  12. Unless you have suffered with wind and a stoma, you will have no idea of the pain it can cause, seems such a trivial issue but makes this whole scenario much more miserable.

    My tip will upset you,cos it did me at that point in my recovery, but it is to keep your tummy full,I know the thought of food is awful, but it does work. If you can grit your teeth and get something inside you every 2 hrs the wind will disappear, it happens cos there is not much to churn on, and so encourages the wind.

    I nibbled on ripe mashed banans, white rice, mashed potato, toast..anything bland and boring.

    the worse thing was anyone trying to tell me that I would soon feel better. ( I did, but didn't believe it at that point)

  13. Are you still sipping mint tea?Ricky.s grandad had a lemon spray which came with the bags,but that was 10 years ago.A burning candle neutralises odours.dont catch fire though.I think you are being too ambitious at this stage,you have many emotions to go through yet and grateful is way back up the queue but one day Car,one day.

  14. Hi Rose,
    Yes still sipping the mint tea but think I'm just too internally battered for it to make much difference at the moment.
    I'm on Gaviscon now - recommended today by the Stoma team. Funnily enough Rose, they also gave me a little container of Lemon spray today...I'll try to reduce my ambitions and take it more slowly.
    Hugs and thanks Rose xxxx

    Thank you as always for your lovely kind words.

    I will get there, bit by bit... and it helps knowing that people are NOT expecting as much from me as I'm maybe expecting from myself at this stage.
    I shall concentrate on mending instead :-) Thank you for reminding me xxxx

    Burping the bag is something that is mentioned a lot on US blogs - I think they have a bag system a little different to what I'm using, where if you get a release of gas into the bag it can be 'burped' to remove the build up.
    My bags have little filters that really don't work so well and no way of 'burping' the bag until you remove it from the skin (unless it's the drainable ones).
    It may be that more people who mention burping the bag are using the two piece system.

    I'd happily put up with gas IN the bag - I just want it OUT of my tummy :-))

  15. Hello Anonymous,

    Thank you for leaving a comment and some interesting advice too.

    It's true that many people have mentioned 'what' to eat but not really that I may not be eating enough and that this in itself could be encouraging the gas build up.
    Even my Stoma team today did not think of this being a potential solution....

    So I shall follow your advice and from tomorrow will try eating little and often - every 2 hours - and see if that helps.

    You're right in that it does sound trivial but it's such a big deal now - I 'want' to get better, I 'need' to eat more to do this, but eating causes pain so I'm not eating as much as I need - completely vicious circle!

    I'm grateful for your advice and also for pointing out that it may 'seem' trivial but actually does make things so much harder to deal with.
    Thank you xxx

  16. Hi Tony,

    Thanks for the link for the leaflet - I've lost track of what I've got and not got now.

    I will snap out of it - you know me well enough now to know that I will, but right now I just can't get my head around everything.

    Need some time, time and a bit more time I think eh?

    I can't sit here and think how lucky I am because I'm too busy thinking it's not fair! But, as I said, I WILL sort my head out - just as soon as I can sort this flamin' gas problem and lack of sleep problem because of the gas.

    I also think my negative mood swings may also be due to the general anaesthetic and also have flashbacks during the night of that horrible Wednesday night when I needed the transfusion and I felt totally powerless...

    But it'll all pass eventually eh (hopefully especially the gas) :-))

  17. Aunty, go ahead and shout, go ahead and scream, say what you feel and feel what you say.

    Be true to your feelings, you have an amazing circe of support from family and friends who are here for you every step of the way, come rain or shine (or snow storm as they case seems to be). So you just let it all out. No one expects you to be superwoman (though you seem to exhibit superwoman traits).

    Scream and shout, let all out. We are here for you no matter what. No matter what!


  18. You're not in control, and that is a scary and frustrating feeling. I expect all you want to feel rght now is normal, and you know that that's not going to happen for a while yet. I think the idea of making sure that you eat little and often is a very good one.

    If you're strugging to feel positive, make a list. Put the elephant on one side, and on the other try and think of a positive to add to your list everyday. Even if it's a comparison to how you felt last week.

    I know it's easy for me to say, but I'm thinking of you as ever, and sending lots of love, and positive vibes


  19. Hi Clare,

    You're right, I'm not in control and me being me, that is hard :-) and yes, I want to be normal but I'm no longer sure what that even means now.

    The list is a good idea - as Shents said I need to get some balance going.

    It helps so much knowing that you and others are there, rooting for me and sending me such positive thoughts.

    Hiya Lamia,

    You're spot on sweetheart, I have an amazing support network - both from family, friends and cyber friends.
    I mean it when I say I really couldn't do this without you all.

    I've realised I'm not superhuman, I do need help to get through this and above all I need time to adjust.
    I will get there though - eventually.
    Hugs and kisses xxxxx

  20. Just some things I remember : take probiotic pref multi sttain, holland barrett do a 7 strain one - take first thing on empty stomach but have nothing hot for 20 mins as heat kills the good bugs;

    BRAT diet which is basically what someone already mentioned: bananas, rice, applesauce & toast - simple diet gentle on your insides, rice gives bulk especially brown rice which is so much better for you;

    don't drink with food, your insides do better at one thing at a time - this can help with wind;

    charcoal tablets to chew help break down wind;

    avoid onions, cauliflower & spicy foods - I had to treat my colon like a baby after my reversal for the same and other issues you have - only eat what you would give to a baby, you wouldn't spoon in a curry so that's a helpful guide, then as time goes on I reintroduced foods odd times until I could tolerate them.

    The pain of trapped wind and stool is excoriating and was reducing me to constant noisy tears for all those weeks on chemo. I empathise with the pain, the lack of self confidence, hating the lack of control in almost every way imaginable: appetite, weight loss, pain, scars emotional and physical. I have to through this process now again - without the lower wounds - they refuse to operate "too risky" whether cancer there or not - again no control. I'm with you Carol, but my friends are few and distant, my family the same & no husband or kids at home - trust me when I say they are making it easier than it could be ( hard to imagine things worse I know).

    I just bent my knees up in bed - woman opposite just said "don't put your knees up, spoiling things" (what the heck? Then "I can't see the animals now". Do I have a set of scales with a grumpy elephant too? Can't wait to escape!

  21. Hiya Lisa,

    Great advice as always - I will go back on the probiotics again. I had stopped them for now whilst things settled (they recommended I take 'nothing' for a while) but I felt loads better when I *was* taking all my supplements, so back to trusting my own judgement I reckon :-)

    I know I sound like a grumpy cow and I do really appreciate what my family/friends are doing for me - I wouldn't be able to do this alone, you are far braver than me....I wish we were all closer to where you are so you could get extra help along the way too.

    The woman opposite your bed sounds like great blogging material...take notes LOL :-)))

    Am going to check your blog because I'm confused now about your op...are they refusing to do it now due to risk element?