- 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 2 - Thurs to Sunday Post Op
Thursday morning - 2 days Post Op......
So as I said in the last post, I made it through the night and now things should start to improve.
Catheter was bit painful this morning - bladder felt bloated and full so asked the ward auxillary to get me a nurse as I was very uncomfortable. She insists on contacting the pain team manager meanwhile I'm explaining that I don't need the pain team, I just need someone to look at the catheter and see what was going on. She insists she HAS to phone the pain team - so whilst she's gone I wriggle round like a little worm in the bed and get hold of the catheter unit myself and start to empty the measuring bit into the main part after realising that it's actually full and there's nowhere for fresh urine to drain into.
My nurse Marie spots me and comes over to help - I explain what was going on and she tut's and just says 'People need to learn to listen to patients sometimes around here - it just needs draining out and you'll be fine'.
I ask her to cancel pain team manager for the time being. Everything is so hard to get through to people sometimes. I don't get why they can't just listen and then decide if what the patient is saying makes any sense at all. Marie agrees with me on this and later in the day, Cathy the Stoma nurse agrees with me too.
The woman from the pain management team came up to see me later in the day (unrelated to the catheter incident) and I explained that my left leg is now completely paralysed, I am totally unable to lift my leg or move it independently. If I want to turn over I have to sort of drag the leg around - lol, sounds ridiculous but that's what I have to do.
She said we could discontinue with the epidural but in the long run it will make no difference. What she meant was that if the damage is temporary then the feeling will return once the epidural is removed and in the meantime no further damage is being caused.
However if the paralysis is permanent then stopping the epidural now would make no difference as the damage is done....I said I want to keep it for now until Saturday am as arranged by Brian. Doesn't make sense to me to stop it if it makes no difference to the leg long term wise. We'll just hope that Saturday I get the use back.
She's quite abrupt and a bit dismissive but I realised this is just 'her way'. She did ask all the right questions and said I should inform the nurses if I needed any further support from her once the epidural was removed.
I told her that the Physio wanted to get me up out of bed and as much as I was willing to try, my leg wouldn't support my weight and I was worried about falling. She was adamant that until the leg had some feeling returned I should not be up in the chair, but instead I should be propped up in bed and the leg should be raised (by the bed) and toes wiggled every ten minutes. Once relatives arrived ask them to massage the 'dead' leg for a few minutes every half an hour whilst resting in bed.
About an hour later the Chest Physio arrived - she didn't actually tell me her name just breezed in, pulled the curtains around and said 'Right, you need to get into the chair now and sit out of bed all day until 8pm tonight'.....
I told her I couldn't support my weight as the leg was 'dead' - her reply 'Nonsense, Yes you can support your weight, you just think you can't'....(???)
Said 'No, actually I have no feeling whatsoever in my leg and the pain management team said I should not try to put weight onto it and I should not be sitting out in the chair until some sensation returned'
Her reply was cutting 'You need to listen to me and stop listening to other people'...
For goodness sake, WHO exactly am I supposed to be listening to? Who decides that Ms A is more important than Ms B or Mrs C has more relevant information than Mr D? I have no idea why some people just seem to need to make everything harder.
Anyway I said I'd try if she helped me because if I fell and developed a hernia or any other damage to my wound I would have to hold her personally responsible as SHE insisted I listen to only her and ignore other advice. At this point she called for a nurse to help me from the bed to the chair - left me sitting in the chair and just stalked out!
I managed to sit there for about 45 minutes then felt faint and called the nurse to pass me my water.
She then said 'I think you need to be in the bed, I've spoken to the pain lady and she says you should be in bed - let's get you back there before chest woman reappears' ...so they help me up and my leg gives way under me completely and luckily they have enough of a grip on me to sort of throw me onto the side of the bed - ridiculous situation but quite funny thinking back on it....... I then shuffle myself back into bed and raise my leg.
Chest woman reappears after about an hour (I see her coming so pretend to be asleep - lol - but I'm peeping with one eye at her).....
She looks over at the empty chair and shouts for the ward Sister, asking why I'm being allowed to rest on the bed against her advice to which Sister replies 'Because this is my ward, I'm senior to you and I decided to follow the advice from the pain team who feel she needs to sleep in bed with the leg raised - any other questions?'....She again stalks off. I start to realise that there are some real characters working in this place.
Sister looks over at me and winks and says 'That should give you some peace now'....Actually she didn't come back to me once during the rest of my stay :-)
Friday, 12th November - 3 days Post Op
Sat out in the chair for a while today with the leg raised - this was MY compromise as I was getting fed up being in bed all the time. The epidural is coming out tomorrow at 6am!
Threw up after Breakfast again today - seems to be a regular thing now :-(
For lunch today I'd ordered Chicken soup - finished it even though it was a disgusting 'Cup a Soup'....you would really think that they could do much better in a hospital environment.
Apart from the obvious health benefits of having FRESH soup made with FRESH ingredients, it would also work out tons cheaper than providing reconstituted liquid crap in a mug. My appetite is rubbish at the moment anyway and it's not helpful if the food isn't tempting.
Dinner time I had some poached white fish and mashed potato - ate about half. Tasted okay but just looked quite unappetising.
Mum and Dad visited today, then Rab came up later in the evening and James after work.
James had printed off some blog comments for me to read - that was great because it did motivate me to keep on keeping on :-)
Saturday, 13th November
Today was epidural removal day and I was really scared about how much pain I'd feel. Spoke to the lovely Marie about this during the night and she came to me half an hour before it ran out (5.30am) and gave me some oral painkillers. She said once we disconnect it, if you feel any pain I will give you oral morphine. I felt better knowing there was a plan in place.
Alarm went off on epidural machine at 6.00am prompt and it was disconnected. By 7.30am I could lift my dodgy left leg without any problems at all and best of all, pain was more of a discomfort than actual 'pain'. Excellent!
My pain management is now Paracetamol and Tramadol 4 x a day with the option for oral morphine if it's needed at any point.
I had no appetite at all today - everything tastes like cardboard and looks completely unappetising. I'm struggling every day just to get a few basic calories inside me - also still throwing up every morning after breakfast (the toast really does taste like cardboard and this probably doesn't help much).
I hate the bag, I hate the way it looks, the way it's just 'there', it stinks - (even though everyone else says it doesn't, I say it does)...Asked today if someone could help me change the bag but nurse said no because they didn't have the supplies on the ward and it would be best if only the Stoma nurses dealt with it at the moment. Told the nurse it was upsetting me because I could smell it, she said it was psychological and there was no smell at all coming from it - she then sprayed me with air freshener for good measure - LOL! Now I stink like a cheap hotel lavatory instead :-))
Lunch today had some poached fish and sliced potatoes - ate about half again
Dinner was fish n chips - picked at it but really managed very little.
Surgeon came in to see me today. Said he wanted to send me home on Monday - I was horrified. He said to the nurse 'She's an intelligent woman, it won't take her long to work out the bag system and self care, there's no reason for her to hang around here risking infection'...
Nurse pointed out that the drain was still in, I hadn't actually managed to walk any decent distance yet, the catheter and fluid drip were still in place, the epidural had only been out for a few hours and I'd been temporarily paralysed - he seemed impatient and just said 'Yes, yes nurse - she'll be fine'....then left.
I looked at the nurse and just burst into tears. She is lovely and pulled the curtains around me and said 'Carole, you're not going anywhere on Monday - there is NO way the Stoma team will agree, you still have some type of infection and the antibiotic course doesn't end until Wednesday, we nearly lost you 3 days ago and you're simply not well enough to leave yet - so don't worry about what he says'...Felt better because despite my earlier pledge to escape as quickly as possible, it also has to be when I'm physically well enough to cope at home - and right now, I'm not ready.
Rab came up with Dj this afternoon and I could tell he was really pleased to see me and relieved that people hadn't been lying to him. He said 'I'm glad you're alive mummy' (that's Dj for you, direct to the point eh).....Told him, yep, me too mate and he gave me a hug then moved on to ask a million questions about everything in the ward but especially the adjustable bed.
Found myself going up and down a few times on the bed, whilst he sat there looking completely innocent! :-)
James and Leanne then arrived and took Dj back home with them for an overnight stay.
Rab stayed with me until early evening then I said he should go because I was feeling really tired and I just wanted to sleep some more. I could see he felt a bit lost really - me in hospital, Dj with James/Leanne so asked him what he would do during the evening and he said he'd just go home and do the washing - bless him.
This is a man who had NEVER used the washing machine in all the time we'd been married until the previous week. He's done so well at keeping things running at home and I have a completely new respect for him over all this. He's shopped, cleaned, washed, ironed, changed beds, organised school stuff, supervised homework, visited me every day, grassed up the neighbours to the local police for running a brothel opposite our flat (big LOL), and still managed to keep a sense of humour during all this. Nice one Rab :-) xxx
Sunday, 14th November
Had the catheter and fluid drip removed today and starting to feel a new sense of freedom now. I can move about and only have to think about the drain (connected to the cheek of my bum and draining blood via a pump system) when getting in and out of bed.
Managed to keep one slice of toast down this morning - with a huge struggle but did manage it!
Got up immediately after breakfast and sat in the chair whilst my stomach struggled with the idea of holding onto the toast. Once it settled I took myself off for a shower. Arrived there then realised that something was wrong, I was covered in blood pouring down both legs - soaking into my lovely surgical stockings, all over my slippers and I had no idea where it was coming from. Rang for the nurse who appeared and said it was the drain leaking, for some reason the vacuum had stopped working and the unit needed to be changed. She got me back to the ward and cleaned me up, gave me clean stockings (I have to wear them for a month along with having the injections to avoid developing DVT after surgery).
My senior nurse that day, Merje, changed the drain unit and I can tell you that was the most painful experience of the treatment process so far.
The suction was agony when it was first applied (and I did swear out-loud) but the discomfort didn't actually last too long. At this point they decided they should probably give me a dose of oral morphine - good stuff.
Didn't feel much pain within about 10 minutes and it was the only dose I needed during the whole time in there.
Mum and Dad came up this afternoon and she brought me up some home made soup which was lovely and I managed to eat all of it.
For lunch I'd had fish and potatoes (boring) and ate very little again.
Horrid bag smells but isn't really producing anything much now - just a bit of smelly yukky looking fluid really. However I'm not eating tons so that probably doesn't help - although I am eating bits along the way so it should be producing something.
It was initially but just seemed to stop late on Friday. My stomach feels a little sore too, like a constipation soreness and bloating. Have to keep an eye on this or they'll have me on laxatives next!
Managing perfectly well on the new painkiller regime of Paracetamol and Tramadol. Feel bit spaced out at times and extremely tired still but pain is definitely more manageable than I imagined it would be. It's really quite unbelievable that they can chop out a fairly large part of your body and the pain (after only a few days) is manageable with Paracetamol! Amazing eh :-)
To be honest, it's more discomfort now than pain and I didn't really expect that in less than a week. Good news so far on the pain front at least.
Am tired beyond belief but every day is a step forward now. Made it through the crucial op period, now just got to make it through the next 3 weeks to get me out of the 'danger zone' associated with this particular operation.