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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..

Thursday 25 November 2010

Part 3 - Final part of Hospital Stay.....

Monday, 15th November - 6th Day Post Op......

Very very sick again today after breakfast. One of the lovely nurses Louise suspects it could be simply because I don't usually eat breakfast immediately on waking so decide to delay eating the next day to see if it makes any difference.

First thing this morning Registrar from the colorectal team arrived to check me over. She mentioned the discharge date that the surgeon had suggested on Saturday and said it was 'simply ridiculous and just not going to happen yet'. Told her I was relieved to hear that.

Spent the morning walking up and down the ward corridor and recovering in-between. Even the smallest amount of exercise leaves me totally exhausted at the moment, but each day I can get a little further.
Finding it hard to concentrate on anything (again due to tiredness) for more than a few minutes at a time, struggling to remember basic things at times too - for example what I ate yesterday or even at lunchtime that day, I have to really think about things before answering.

Stoma not working at all now so this afternoon I asked Rab to go and get me the largest bag of Liquorice Allsorts he could find - I knew if it was a minor conspitation problem due to the painkillers then that would do the trick.

Changed the bag myself today whilst Nicky supervised me. Had no problems with this at all, it's not the practical care of the bag/stoma that is an issue for me - it's the 'having' the actual stoma and knowing it's a permanent fixture now. I dislike everything about it.

Rab came up during the afternoon and then James and Jacqui came up during the evening. Nice to see people but I get so tired so very quickly still. In bed and ready to settle down for the night by around 8.30pm!

Tuesday, 16th November - 7 Days Post Op

Stoma started working again today with a vengeance! Allsorts obviously DID the trick. Today seemed like it was constantly on the go along with griping pains in the colon all day long.

Still very tired but forcing myself to take regular walks up and down the corridors. The keyhole wounds are healing really well and although my tummy is sore it's not unbearable by any means, just feels like someone has been inside and given things a good shoving around - mainly I'd describe it as feeling 'bruised' internally.

Brian, the lovely anaesthetist, came to visit me this afternoon to see how I was doing now. I knew he didn't have to do that but came because he'd wanted to - very special man indeed and he knows that I feel it made so much difference to me.
Had a chat about how things went, how I felt now and filled him in on the Wednesday night experience (he'd been off work doing conferences since my op on the Tuesday night so was unaware of the events)
He said it was important to let the staff know what I believed had made a difference so that care for future patients could be improved or adjusted. **
When he left he said it had been lovely to meet the family as well (he'd met James, Rab & Dj on the Monday night before the op) and made it all the more 'real' for him when he gets to talk to real people, real families and can smile with them afterwards knowing all went well....Both James and Rab said he's a top bloke :-) and I totally agree with that statement

** They ask you to fill out a diary when you are discharged about your hospital experience, good points and bad, people who made a difference - either good or bad, what could have been done better/differently - you then hand this in at your first out patients appointment after surgery (my appt is the 8th December)...
I hope they are ready to be reading lots from me :-)))

Mum and Dad visited me this afternoon, Mum had made more soup and made me some stewed apples to snack on.
Terry came up with James this afternoon and it was lovely to see that James has got someone supporting him....I always knew Terry would be there for him because that's T for you - solid as a rock and always has been, but it's still good to know that J's got someone to sound off to when he gets fed up being tough and cool about everything :-)
(Know you too well J, you're too like me I'm afraid to manage to hide it...) xx
Rab came up later in the evening as always.

Changed the bag myself this evening without supervision or help. It's not difficult and like I said it's not the 'practical' side of things that bothers me at all.

Fell asleep early tonight, around 8.30pm again. Restless night as the night nurse was in and out of the room banging the bin lid repeatedly (not her fault as it's broken but still irritating when it constantly wakes you with a deafening CRASH!)....

Hoping to get rid of the drain in my bum tomorrow as they feel it's draining very very little now and therefore should be safe to remove - fingers crossed that happens because it's sore and uncomfortable having a tube stitched into the cheek of your bum constantly draining blood away.

My wound has been dressed daily since last Thursday. Apparently it's a neat, clean wound with no signs of infection at all, very neatly stitched and appears to be healing better than expected. Surgeon wants the stitches kept in place until 7th December (4 weeks post surgery) as this particular type of wound has a habit of breaking down - especially if you've had Radiotherapy pre surgery. He feels the longer we leave the stitches in place, the more chance we have of a secure wound.
Let's hope so because I really don't want to have to do surgery again.

Wednesday, 17th November - 8 days Post Op

Delayed breakfast this morning and didn't feel sick for a change. Had a cup of tea and saved my toast for later (much to the irritation of the catering lady who wanted her plate back - lol).
Ate my toast an hour or so after waking up and this seemed to work.

Wandered off for a shower and whilst in there the drain literally fell out of my bum - no blood at all so it must be the right time now for it to be out! My nurse, Louise, removed the stitch when I went back to the ward - whilst she redressed the wound. Still no infection, still looking good....
As she said, if you've got to have a wound like this then it does at least have to be a good one :-)

Still walking up and down and resting in-between. Still feeling exhausted but this is going to take time to recover from.

Doc and team came round today and she said she's happy for me to go home tomorrow if I have a decent night now that the drain is removed and because today is my last day of IV antibiotics....
Cathy, Stoma nurse, checked the bag I replaced last night and said it was done perfectly.
Have developed severe oral thrush now - due to the high concentration of antibiotics that they've fed me since last Wednesday. Using a mouth wash solution to sort that out now.

Thursday, 18th November - 9 days Post Op

Checked by doc and team this morning and am free to go home and continue my recovery there. Nurses have organised the district nurse to come to me at home and sort the wound dressing out, initially daily then we'll see how it's going.

Left with painkillers, injections that Rab needs to give me for the next few weeks every night, ANOTHER Sharps Bin (Ha! you listening Lou/Tony? - my SECOND NHS Sharps Bin...LOL!) mouth solution for the oral thrush, dressing packs in-case the District Nurses don't have the right supplies at first, spare pair of surgical stockings, numerous packs of Fortisip Soups and Shakes (yuk! but I'll try to get some of them down me) and other bits and bobs.

Arrived home early evening and recovery period at home now starts...


10 comments:

  1. Hi Dizzy
    So pleased you are back home may the recovery begin now. thank you so much from all of us who follow you.

    best wishes

    Luckyus

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  2. Whew! Written so well sis, I can't believe with what you have been through and being totally exhausted you still manage to recapture the events of the most crucial days of your life. I am so pleased the family have all kept it together at this time and look forward to taking my turn of supplying TLC from Monday. I'm so thankful for the support you have been given by your friends, cyber friends and anonymous readers. Especially when so many of them have their own struggle too.
    sis your'e an inspiration to others;
    “Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”
    stick with it sis, you know it makes sense.

    see you very soon my lovely sis xxxxxx
    xxxxxx

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  3. Hello you lovely person.What a journey and a half !!You are such an inspiration and we love your guts and determination.Sending you all a bucketful of good luck.
    Rose xxx

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  4. What Rose said especially your guts and determination - even if there are less of them there guts physically, in spirit you have a skip full...

    Everyone knows it is bad but take it from me everyone - what you see and feel by being there for Carole is about 10% of how bad it actually is - that is not having a go at all of Carole's fantastic support, just telling it how it is from someone who knows :-) Saying that I believe that some people around Carole are true empaths such as her close family as they feel her pain, it is difficult to watch...I always say one of the worst things about this is watching your family suffer.

    Stay Cool!

    T x

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  5. Swear to god, I hit the refresh button so many times hoping for another instalment! I honestly feel as though I was there with you.

    Again, thank you so much for including us like this. You are, as so many have said, a true inspiration. Oh how proud I am to have you in my life, someone to look up to.


    I'm going to insert a quote here just like your sister Sarah did (Hey Sarah :-)) hopefully she doesn't mind me copying her(If I remember correctly, copying another's tactic was extremely frowned upon at school)

    "To be strong is not about power, or the ability to control. Strength is more akin to being able to give more and by doing so, reap the rewards of helping others to move forward in their own lives".
    Byron Pulsifer

    Can't wait to read more!

    Love you xx

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  6. Hi Carole.
    Even without the unpleasantness of oral thrush antibiotics can be cruel on your body. They strip out the 'good' bacteria along with doing their job of getting rid of the bad. I take acidophilus daily, as a digestive aid and as a way of making sure I have plenty of good bacteria. Some people drink probiotic drinks, but I'm not keen on them and anyway I'm lazy so it's easier to pop a pill. However I dont like swallowing tablets, so with vegicaps you can break them open and sprinkle the powder on cereal or suchlike. Something like these, mail order from Holland & Barret: http://www.hollandandbarrett.com/pages/product_detail.asp?pid=682&prodid=723.
    Check with Stoma team first perhaps incase they say absolutely not.

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  7. Carole, you are a champion! I can only imagine what the experience was like for you. Does seem some of those doctors and nursing staff realised just how special you are, although if your system is like ours they will be run off their feet.
    So lovely to have you Posting again
    Stay strong xo

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  8. Thank you to everyone for the lovely comments.

    This was by far the hardest part of this battle (so far) and it's not over yet.
    I'm taking one day at a time, hoping that as each week passes I'll feel a little better then we'll decide about next steps.

    I need to do another post on 'next steps' which I'll tackle some time over the next few days.

    In the meantime I just need you all to know that the support you've offered, whether in real life or cyber life, has been amazing.

    I couldn't have done this on my own. So thank you all xxxx

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  9. Nothing I can add to all the above, other than to say how fabulously well you're doing. I know its hard, I know you're having a crap time, I know its just the biggest sodding cack that anyone should have to cope with, but you ARE getting there, and you WILL be ok, and the cancer has GONE.
    And there are so many of us willing you on and holding your hand.
    Much love, dear friend
    Shents xxxx

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  10. Off to Spain on Sunday for a few days R&R but will be thinking of you and wishing your recovery progresses well and you gain your strength to fight the battles ahead brave girl

    rest up and take care

    loadsaluv

    David [Carole]xxx

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