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, 29 September 2010

Hospital visit today.......

Today I had to go to the hospital to meet with the Stoma team and after that to meet again with the surgeon
I thought I'd finished with him until the surgery, but they contacted me and asked me to see him again today - wasn't really sure why although I suspected it was maybe because he's still wondering am I actually going to go ahead with this op or not....

So firstly to the Stoma team. This was only going to be a quick measure up ready for next week.
The idea is that you get to have some say in where they place the Stoma, working out where it will be most comfortable, interfere least with your clothing and fit into your lifestyle...
Anyway, the 'quick' meeting turned into a 1.5 hour chat with Anna, one of the really lovely Stoma nurses. I met with her before and she's great - very dry sense of humour, doesn't tell you it's going to be 'okay' and all fine....What she said was:

'It really doesn't matter what I tell you because until it's done you can't possibly get to grips with it, after that it's a choice of who controls who - you either choose to control your Stoma or you let it take over your life and control you'...

She then went on to say that I'll probably not even want to look at it for the first few days - and that would be fine. They will deal with it until I'm ready but she's confident that once I do decide to get on with it, I'll be fine.

We talked about irrigation in the future - at least 4 months after surgery once everything has settled. What that means is that you can irrigate the bowel daily *flush it out* and then you get no waste for approximately 24 hours - depending on each individual persons routine. I like the idea of that but we'll see how I get on.

I also told her I was worried about changing Stoma teams after my discharge from hospital.
Officially I should come under another hospital after discharge due to my home address - but she said she's going to sort it out so that I can stay with them instead.
I said I didn't want to have to go through the whole building a new relationship, going over everything again, with a new team - she agreed that it's all been stressful enough. I feel better about that already.

Lastly we discussed where the Stoma needs to go on me....I'm now marked up and covered in shiny tape ready for Monday...wanna see?

Our last part of the chat was about diet - she told me to ignore the diet sheets and eat whatever I wanted to.
She agreed that moving from a healthy diet to white processed foods would NOT be the best thing for me to do - and as my body is totally used to high fibre food hopefully it'll be fine. We might need to tweak things a bit but she felt that changing too much would be too drastic and probably lead to other problems such as constipation!

Finally our last bit of chatting was about hernias - Anna tells me that 50% (YES! FIFTY percent) of patients end up with a hernia after Stoma surgery.
She explained that this would mean an unslightly swelling, discomfort and probably a further operation to correct - maybe even needing to move the Stoma to the other side of the body.

It was then explained that hernia's develop when people do not heed the advice given about NOT lifting anything heavier than a cup of tea for 6 weeks, no housework, no carrying shopping or attempting to stretch to 'do' stuff, no exercises.
She maintains that hernia's can be avoided if advice is followed to literally do your walking exercises every few hours, rest and leave everything else to someone else.

I have plenty of volunteers ready to help out so I'll behave myself and do virtually nothing for 6 weeks - I seriously do NOT want a hernia and the prospects of a further op or dodgy Stoma.
If I've got to have one, it needs to look GOOD! :-))

Then I went upstairs and had my appointment with the surgeon....He's actually a nice man, he's kind and I know he does actually care about his patients.

He said that he was confident that by taking the antivirals the Shingles virus should be kept under control and therefore shouldn't be a problem with interfering with the healing of the wound - so that's good news.

We then discussed the PET scan again - he said he'd looked at it again in more detail and double checked all results and was happy to say that there appears to be no lymph node involvement (the MRI had showed that there possibly was a few that were affected) - so again that was good news.
Lastly he said he'd double checked the lungs/liver area and other tissues and could see no signs of any spread whatsoever - his words were 'seems to be nicely contained with no, or at least limited, spread'...Again, good news.

Then we talked briefly about Chemo after surgery. I've made it clear that I'm not happy about having further Chemo unless it's deemed absolutely essential.
I figure we can deal with Chemo IF it comes back in the future - I told him I'd rather be poisoned when there is something to poison instead of 'just in-case'...I reminded him that the PET is pointing towards nothing else flying around my system at the moment.

We left it that we will decide when we get together again approximately two weeks after discharge when I go back for my post op checks - depending on pathology reports, margins and whether the lymph nodes ARE actually in the clear.

He also reminded me that I will be monitored for 5 years (blood tests, scans and 6 monthly checks initially - moving to annual checks if the first two checks go well) but will not be classed as being in remission or free from cancer until we get to that magic 5 year marker.
He reminded me that Rectal cancer can be a real 'problem' for resurfacing in other places (liver/lungs) but that we would deal with that if and when it happened - which is exactly why I don't want Chemo for no reason when I may well need it for a reccurrance in the future.

He then asked me how I was feeling about things particularly the Stoma and the surgery - I told him I still don't 'want' the op but I've accepted that I have no real options and I'll be okay once it's done - somehow I'll find a way to deal with it and move on.
He nodded and smiled then said 'You will Carole, you will.....You're realistic, inquisitive, tough and you're brave and I feel you will be coping with this very well before you know it'.

So, that ended our meeting with him assuring me that he's going to do his best possible job on me and all will be well.
Told him it best be all well, and that I'm only trusting him with my life because he's a Greek man and my sister lives in Greece - He laughed alot at this and said 'Then I definitely have to do my best for you Carole'....

And I know he meant it :-)


  1. Hello brave soul

    Such a high degree of positivity from both yourself and your team, matched, I suspect, only by the degree of anguish that loiters below the surface, must do so much to help you and your family to beat this apocolypse-like prospect into virtual submission. I have every faith that this chapter of your story is destined for a happy ending.

    An enormous hug and a moo from me

    David [X]

    P.S. Cute navel you got there girl....where's me celery? ;o)

  2. Sounds like some positive things came out of the meeting, like not having to change your diet. It makes me wonder why they give you these bits of paper in the first place!!

    It seems they gave you loads more information on what will be coming up over the next few weeks/months.

    Lots of love

  3. Hi David,

    I am feeling quite positive about things now - I've moved from reluctance to acceptance and it's a better place to be.
    And a big Mooo back to you too - and it's not celery you need, it's grass.
    Drink it though rather than eating it :-)

  4. Hiya Paula,

    Yes it was a positive day yesterday, I felt much happier afterwards.
    I was particularly happy when the Stoma nurse told me to pretty much ignore the diet sheets and work on my own instincts - NO Coco Pops for ME! :-)

    Hope your cold clears soon - you really must look into that immune stuff at some point -especially with winter soon approaching.
    Much luv xxx

  5. Just remember the grass is going to be greener on the other side! :)

    Glad you told him that we have Greek connections. He will be extra careful with you now :)

    Yes, really take note of the chance of hernia. It's just not worth being superwoman for at least the next six months! My friend got a hernia shortly after her operation as she started up at the gym, she thought this would improve her health!

    Great stomach muscles by the way.
    Is that my belt?! Wouldn't fit me now!!

    hugs sis xxx

  6. Sounds like a good team there.It helps so much if you have faith in the people who are advising you. stay strong

  7. Hi Sis,
    No Anna warned me absolutely NO exercise at all - this is a time when exercise definitely doesn't do you any good at all.
    I'm surprised your friend *and I think I know who this is* wasn't aware of that :-(

    My stomach muscles look good eh....have to admit though, they look better standing than when I'm sitting - LOL

  8. Hello! I've only just spotted this post. Sounds like a really good and positive visit to the hospital. And yes, great stomach muscles. Like the colour of your top, too! xx

  9. Nice 6 pack Carole! Hope those sniffles go soon, plenty of green tea and water!

    Much Love

    Tony (loving the mmmmmmmmmmmmmoooooooo David)

  10. Yep, I'm on the Green Mint tea Tony - plus all my Dr K stuff so am optimistic that it'll be a short term thing.

    Lou - Debenhams top - last season...but lasted pretty well :-)
    And yes, it was a positive visit, it helps that I actually like my surgeon I think :-)