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..

Sunday, 28 November 2010

Since I've Been Home.....

So this post is really just to bring things up to date now.

As you know I've been home for 10 days now and although still exhausted mostly, every day feels as though I maybe have found a little energy from somewhere. I'm managing to walk, slowly and painfully at times (muscles in stomach are painful not the actual wound - that's just uncomfortable mostly rather than painful)

I have no appetite and have to force myself to eat daily. People ask me 'What do you fancy to eat, anything, I'll get it - just say what you want' and the truth is I don't want anything.
I know I have to eat for obvious reasons but I simply cannot say what it is I 'want' to eat because I don't actually 'want' anything. I went into hospital weighing about 8st 4lbs and now weigh around 7st 9lbs....
It really pisses me off when people say 'You have to eat' because I'm not dim and I know that - what they need to tell me is HOW to eat when you don't want to......
Colorectal nurses advice at the moment is to survive on Ice Cream and Cream cakes (and even the thought of that makes me heave) :-(
No doubt I'll work it out eventually

Went to the GP last week because a large lump appeared in my neck, on the jawline. Left it a few days and when it hadn't gone I asked the District Nurses what they thought - they said it needed to be checked.
GP was quite bothered by it and decided to contact the Oncology team that I saw back in June and get me a referral. They've since contacted me and said they'll see me on the 14th December because that was always the plan after surgery anyway.

Despite my surgeon appearing after the surgery and declaring to my family 'No more cancer in you Carole' he's since admitted he cannot be sure of this.
A few days after that first declaration he came back and said he was waiting for lab/histology reports and couldn't confirm anything one way or the other until then - but at first glance it looked like he had probably managed to get a good margin....

On my last day in hospital he came and said he now had the histology reports which showed a 'poorly differentiated adenocarcinoma' and he was now referring me for 6 months IV chemo....I was gutted (in more ways than one)

I'm going to discuss things with the Oncology team at the other hospital but I have to tell you all that there is no final decision been made yet.
I am not happy about doing 6 months Chemo unless they can tell me exactly what we are targetting with this poison. I am fairly sure that I'm not going down the Chemo route unless there is still cancer in my body - more questions than answers right now.
Looks like I may well be asking for another PET scan at some point :-)

Right now I'm so weak and tired that I doubt I'd even survive Chemo anyway.

Going to the hospital tomorrow to see the Stoma nurses and get some new supplies ordered. It works okay (the Stoma) it's easy enough to take care of but I just detest it.
Dj asked me yesterday if I hated it as much as I'd expected to.....said I didn't really know right now because it's a bit soon yet, but I definitely don't like it.
Rab then pointed out that he didn't think I'd ever LIKE it, as such, but as time goes by I'll think about it all less. That probably sums it up.

District nurses come to me every other day to dress the wound and check that it's free from infection. I'm getting the stitches out on the 8th December and hopefully it's going to hold up. Looking forward to a long soak in the bath after that - showers aren't the same when you ache all over and just need a long soak.
District nurses are lovely, very kind and reliable. I've heard stories in other areas where people are let down regularly by nurses that don't arrive on the correct day or refuse to come at weekends - mine have been brilliant and each one has been so kind to me. Although they have busy schedules they always make time for a chat afterwards and ask if there's anything at all they can help me with.

So, to sum up - every day is still hard. I've cried every day since I've been home, sometimes I don't even know WHY I'm crying - other times I can pinpoint the reason or probable reason....

I feel so drained and exhausted that I have no 'Wow! I'm alive and the cancer's gone' feelings at all....I just feel like shit to be quite honest - roll on New Year!

This picture below is probably one of the least complimentary ones ever taken of me....(taken the day after I returned home from hospital - Friday, 19th Nov)....

Thanks Dj for saying 'Mummy, I took this picture when you were asleep and I SWEAR you do NOT look like this and the camera DOES lie'....:-)

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...

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.

This was taken on the Thursday morning after the transfusions during the night...

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!

This was taken approx 36 hours after the transfusions....

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.

Tuesday, 23 November 2010

So - what's been happening then?

I'm going to have to do posts on a few days at a time now to bring you all up to date with my adventures.
This one will cover Monday to Wednesday - admission day to 1st day post op. Get a cuppa before you start as there's lots to tell..........

As you know I was discharged on Thursday, 18th November late afternoon - early evening by the time we got home and was simply too tired to say much about what had happened the previous week and a half....
Have reduced my pain meds and feel that I can now type a sentence that resembles something, at least similar, to the English language.

So Monday, 8th November - set off for the hospital stay with Rab about 9.45am.
Took a last minute telephone call which delayed me slightly (and yes, I think I was still hoping that they meant what they said about giving my bed away if I was late...) and arrived on the ward - once we eventually found it - at 10.10am. Bed still available.

Unpacked, felt grumpy and miserable, took it out on Rab but he didn't say a single word in complaint. Just smiled in a knowing and sympathetic sort of way - and said he'd help me put my stuff away.
I complained and grumbled about everything from the broken cupboard door, to the position of the nurses station, the noisy bin in the ward, the lack of space, then just sat on the edge of my bed and cried. Rab just passed me the tissues, pulled the curtains around and carried on sorting out my stuff for me - so I pulled myself together and stopped complaining.

This was me after my little crying breakdown....trying to find places for my stuff

After we'd been there about half an hour my named nurse for that day, Christina, came and had a long chat with me - took blood pressure, blood samples, weight etc and said "Today you just settle yourself and ask me for anything you need".
Spent the afternoon doing the prep and feeling hungry all day. Relaxed, read magazines but couldn't really concentrate.
Rab came up in the evening with Dj and James came up after work which did help with making me feel relaxed and somewhat prepared.

During the evening my anaesthetist, Brian, turned up to introduce himself.
He said it was a novel experience for him to have time with a patient the evening before an operation and much preferable to meeting them in a corridor just before a pre-med.
I knew that someone had asked him to come up to me and suspected it was my Enhanced Recovery Nurse, Susan, because she's known all along how worried I was about this whole procedure.
He was such a lovely lovely man and I knew I could trust him. He explained everything to do with the pain relief afterwards as well (long term use of epidural) and said I needed to do nothing more during the op than just trust him and all would be well.
He promised to look after me and I knew it was more than just words - I believed he meant it.

Slept really badly Monday night - ward was cold, needed the loo a few times and just couldn't settle into a proper sleep...hardly surprising though really.

Tuesday, 9th November - Operation Day
Woke up at 5.30am and took myself off to the fridge to get the pre-op drinks that I had to have before 6.00am.
Had a stinking headache bordering on becoming a migraine and felt like crap. So took myself off to shower, then got into the gown they give you, got myself back into bed and knew then that I was going to throw up.
Nurse got me the customary cardboard 'hats' that you get to be sick into and I happily used it...Oh well, goodbye pre-op drinks......
They let me sip water just to clear my mouth and offered painkillers but seemed pointless as would shortly be put to sleep again. Instead opted for anti nausea pill to stop me throwing up anymore. Wheeled off to theatre at 7.30am.

Brian was there and I knew I was relieved to see him. I didn't realise that I had tears rolling down my face at this point until the nurse wiped them (and some of them had dripped into my ears) and she told me not to be worried because everyone there would be looking after me.
At this point another more senior nurse arrived and said
'Hello Carole, can you tell me what you're doing here today?'....

Took a deep breath and replied 'I'm having an operation' (whilst silently praying PLEASE do not ask me what the operation entails or I'm going home).....

She looks at me, smiles and says 'Yes of course you are having an operation today. Can you tell me more about the actual operation Carole' - at which point Brian turned to her and gave her 'a look' that said 'Stop! now!'........She did and I cried some more. I saw her quietly ask him 'What about the epidural?'...he replied 'All later, not now'..

He held my hand and said 'Look into my eyes Carole, what did I tell you yesterday? Nothing can happen to you whilst I'm here, I will look after you' .........

The next thing I remember is waking up briefly in theatre recovery with a member of theatre staff asking me if I would like to see my relatives now for a short time - I remember seeing Rab, James and Leanne and I remember feeling very very cold suddenly and starting to shake uncontrollably...... I don't remember the mosquito's at all (thank goodness)...I remember it was 5.30pm on the clock in the room - 10 hours had passed.

James told me they they'd just seen 'Brian, top bloke' and he'd confirmed that all had gone as well as it possibly could have during the operation.
Both James and Rab said that Brian had gone out of his way to put their minds at rest and he will always be their most positive memory of my stay in KC Hotel :-)

I also have a vague recollection of my nurse, Bandana, asking me if I knew Jan the school nurse because she's just phoned to wish me well and was sending her love....I didn't know who she was talking about though so I said 'That's nice' and went back to sleep.

The next clear recollection I have is waking up to discover that the young man on the bed behind me was dying, they were carrying out CPR on him and all sorts but he didn't make it.
I shouldn't have been able to see this of course but my bed was facing the wall and on the wall was a picture of 5 diving dolphins and the light reflected what was happening behind me onto the glass..... I went back to sleep knowing I was in a place where people died - but I was too tired to care at this point.

Rest of the night was taken up with being woken for blood pressure, listening to them worrying about it being too low (less than 100 apparently) and constantly lowering or raising the bed to see if it made any difference.

Around midnight I woke to find Christina my lovely nurse from the ward standing by the side of the bed. She smiled and said 'Hi, I just popped in to see how you're doing'....So sweet and I felt cared for and more than just an NHS number....

Around 4am I woke up feeling like I couldn't breath, like someone was sitting on my chest and I couldn't get adequate air into my lungs so they got the on-call doctor to come to check me. Had a ECG? (the thing where they stick the little leads onto you and measure your heart) and he said there was a 'trace' but I should be fine. Think that meant that my heart rate along with my blood pressure was a little low but after a good sleep all should be fine. So I managed to sleep some more.

I was told before the op that I would spend 2 days afterwards either in HDU or ICU - I spent time in neither.
My 'special care' was limited to being kept in Theatre recovery overnight (until Wednesday lunchtime actually) then returned to the ward and handed over to a Newly Qualified nurse - who shall remain nameless......

Wednesday, 10th November - 1st day post op
Returned to the ward at around mid-day by the theatre staff. Found out who my named nurse was for the day when she introduced herself by attempting to haul me up the bed by the armpit on one side whilst I was protesting and saying 'No, No, please don't yank me around, I have an epidural in my back'.....She looks surprised and says 'Really? Why do you have that then?'.....I ask her to read my notes as it's all explanatory and attempt to get comfortable myself.

This was when I was first returned to the ward.....

She comes back after a while, asks if I'm feeling okay (I'm not, I'm crying quietly at this point feeling totally overwhelmed with everything) and gives me a tissue. I don't see her again for a couple of hours.
James came up during the afternoon along with Rab and they sat with me whilst I mostly drifted in and out of sleep, waking up for occasional drinks of water (no lunch had been ordered for me so faced another day with no food until the evening meal).

An hour or so after being returned to the ward the epidural machine started an alarm signal. Four nurses spent the next 10 minutes gathered around the epidural pump mumbling to themselves about possibly low batteries, faults, sometimes this just happens - pressing various buttons and switches whilst I started to feel panic about the pending pain. Eventually it was decided to change the battery and this stopped the alarm going off. Relief but also tension as I realised that no-one seemed to know exactly how to operate the epidural machine properly!

Later on that day, I started to regain the feeling in my pelvic area and realised that the epidural appeared to be wearing off! This was definitely NOT the plan...called the nurse who then contacted a Doctor for me.
Doctor (very young, trainee doctor) sat and patronisingly told me things along the lines of 'It's normal for you to regain feeling, it doesn't work on everyone'....Told her I'm aware of this however it WAS working and now it's wearing off so therefore something is wrong. Told her that Brian assured me that I would be pain free for at least 4 days and that as it WAS working it should still be working, maybe the machine needed checking'....

She really didn't want to listen to me, at one point said something along the lines of 'If you just co-operate it will reduce your pain Carole' .....Co-operate! F&$king co-operate, you cow! My epidural is failing and you want to friggin patronise me? SWOP places now and YOU co-operate.....(I didn't SAY this by the way, but the thought was there and I did have to grit my teeth to refrain from yelling it at her).
Instead I said 'Do me a favour, get me someone from the colorectal team please?'....she sighs and says 'I AM from the colorectal team'.....I groan out loud and say 'OH MY GOD! I am in SO much trouble here'.....
James at this point just smirked at me in the way he knows I understand exactly what he's thinking - which is....Don't panic mum, I'm not going anywhere and if this continues I'll go find you someone else.

Meanwhile blood pressure is dropping lower and lower all the time, now hardly touching early 90's and I can feel they are getting stressed about this. Continually taking blood pressure, hacking into my veins to take more and more blood samples - then young doc decides she needs to get into the artery to take a direct sample from my wrist - explains this will be very painful (I mumble not as painful as the bloody epidural not working though) and let her get on with it.

I don't complain despite her having to do this numerous times as the cannula equipment is 'cheap tack' apparently and keeps failing time and time again.

Proof that the equipment they use is definitely 'cheap tack' and does fail time and time again. This was the mess made of my arm inserting just one cannula and I had four in at one point - all messy and all took numerous attempts as in the picture below....shameful really :-(
You can see the cotton wool wedges where other attempts had been made and given up on.....

She seems to regain a new respect and compassion for me at this point and goes from being patronising to being supportive and kind.
I lost time how many times she apologised for hurting me during this procedure - told her it was okay, just take what you need to take and don't worry. After she eventually got a vial of blood out of me she then said she would get someone to sort out the epidural for me (result eh...all I had to do was suffer with a stiff upper lip and then people start to listen - eventually)
Actually, no-one came to sort out the epidural but it started to work again so I think it just had a kink in the wire somewhere. Either way I didn't really care because it was working again - which meant I could sleep some more.

They warned me at some point during this procedure that I was probably going to need a transfusion as my haemoglobin count was continuing to drop to around 8 (normal levels are around 12 apparently) my oxygen levels were also extremely low along with my blood pressure - so everything was pointing towards a transfusion.
Told them I needed the trial blood....(remember my trial for CJD free blood? - it's in an early post)
Young doc had no idea what I was talking about so I said it's all in my notes, just find the bit about the PRISM trial for blood transfusions.
She looked vague and asked what it's about - explained in as few words as possible that it means I get blood that's been treated for CJD - she says 'ALL blood is treated for CJD already'....I say 'No it's not'...she says again that it is and I start to wonder if I've landed in the middle of a comedy script here. Just about everything I say is counter'attacked' with a 'Oh no you won't' and me saying 'Oh yes I will'......

Whilst all this other stuff was going on, my named nurse was also a huge disappointment. Personally I think it was ridiculous to expect someone newly qualified to be able to cope with 12+ patients plus me just out of major surgery and with numerous problems.
However I still think she should have given me at least some eye contact during the day. She mumbled whenever she came near the bed, gave me a cup full of pills without any explanation of what they were (I don't take pills until I know exactly what they are) came and tried to hook up liquid paracetamol to the drip but it was leaking all over the floor instead of going into me - probably a good thing as she had already given me paracetamol in tablet form earlier, arrived with something in a syringe at one point and started to flush the cannula through so she could then empty the syringe into it - I asked her to stop whilst she told me what was in the syringe...she seemed taken aback by this and said 'Antibiotics! What do you THINK it is?'....I tell her I have no idea what it is and as she's not checked my wristband details I'm not sure she should be giving it to me (All other staff check the wristband for your name, dob and hospital number before they administer anything via the cannula - good practice).
She's seriously pissed with me at this point. I figure better she's pissed off than I just lay there and let her give me the wrong meds!

Later on I tell the young Doc that I do not want my named nurse that day involved in my blood transfusion at all. She tells me that's fine and it would have to be a senior member of staff anyway and not a NQ on her own. I'm happy with this.

Later on she (NQ) returns to give me my anti blood clot injection (have to have these for a month after surgery)...Now, when I tell you she stabs me with a vengeance I'm totally not joking!
I refuse to flinch because by now I realise she meant to 'get' me. From all the anti blood clot jabs I got in hospital, only her one left me bruised and marked. She then flung a Fortisip Shake drink at me and said 'Drink this' and walked off.
I said to James 'I'm not supposed to have the Shake's because they are too thick, I'm supposed to have the Fortisip Juice so could you get this changed for me'....She flings herself back into view (had obviously been listening around the other side of the curtain) and says 'YOU reported me to the doctor, YOU tried to get me into trouble, do you want to see your notes where it says you should have this drink because you don't seem to trust me at all'......
If it wasn't so ridiculous it would have been laughable so I kept my cool and said 'I didn't report you to the doctor, I informed the doctor that I didn't want you involved in doing my blood transfusion but I didn't say why. This was because earlier you left the liquid paracetamol leaking all over the floor and didn't return to see how I was doing, didn't even see if I needed a drink all day, didn't make any attempt to sort out my bedding despite me being in Theatre recovery in the same sheets since Monday, didn't check my wound, didn't sort me out anything for lunch despite me not eating since Sunday night and now it's Wednesday night, didn't ask me if I needed/wanted a wash, in fact you didn't do anything of any use to me at all today. She attempted to convince me that she was a very caring compassionate person - it didn't work.
James also told her that actually he'd been there since 4pm and it was now 4 hours later and you've actually done nothing for my mum since I've been here today. If it wasn't for me and my dad she wouldn't have even had a drink of water all day because you left everything out of reach for her.
She again said she was very caring and told James 'I was there for your mum earlier when she was upset, I gave her tissues' (that's true, she did - but somehow it just didn't feel like 'enough') and I then said 'It's been a long day for everyone, lets draw a line under things and start again fresh, tomorrow'.

She agreed but for the remainder of my stay totally refused to make any eye contact with me, sulked if she looked in my direction and on my last day when I was leaving she made sure she walked past me without uttering a word.
I do feel that some people are just not really cut out for nursing at all.

Wednesday night was one hell of a night. Night staff took over and for the first time that day I felt safe. My night nurse was Marie - stern looking and some may say surly and fierce but she took an immediate liking to me and I couldn't have asked for anything more that night.
All night long my blood pressure was taken every 15 minutes, it was therefore impossible to sleep much as every time I dozed off the blood pressure machine would automatically inflate and staff would appear and start fussing due to the bp dropping lower and lower and alarms going off.
I think the lowest it dropped to was 83/58...normal is around 140/70 apparently? My oxygen levels were also 'too low to be safe' so I was hooked up to an oxygen machine and then they gave me three pints of blood to raise the Haemoglobin levels from 4 (!!) to where they needed to be which was around 12.

The evening before the transfusions took place.....

All in all a very long night - both for me and the staff and also the colorectal surgeon who sat in the chair alongside my bed all night. I remember asking why she was there and she smiled and said 'I have nowhere else to sleep tonight' :-)
I heard her on the phone a little later talking to someone about keeping Theatre 2 free all night, I thought to myself 'That's funny, I was in Theatre 2 yesterday'....and wondered why they had to keep it free all night.
She was then talking about keeping a crash team on standby and then I heard my name. At this point I realised it was being kept for me.
They thought I was bleeding internally somewhere and were getting ready to whisk me back into surgery if the transfusion didn't sort things out.

I went back to sleep, really way too exhausted to worry about what would be.

In the morning I realised that I was still alive and actually feeling a little better! The lovely lady in the bed opposite to me said 'Good Morning Carole, I wasn't sure that you would still be with us by this morning but I'm very glad that you are'.....I laughed and said sorry about the machine noise, all night drama and keeping you all awake, but it really didn't seem to be avoidable.
She smiled and said 'Don't you worry my lovely, I already had my turn at that, last night was all yours'....

A great lady, 84 yrs old and still living independently. I really enjoyed her company in there.

So, that's the first 3 days out of the way, more to come of my 5* stay shortly..........

Saturday, 20 November 2010

Big Thanks.....

Big thanks to James for updating my blog for me whilst I was away - grand job done, just as expected xxxx

Big thanks to everyone for all the supportive messages xxxxx

Unable to say more at the moment, because simply way too tired - suffice to say, I'm home, slowly recovering and more info forthcoming when I get some strength back from somewhere.

Much luv to all xxxxx

Wednesday, 17 November 2010

In the words of Yazz "The Only Way Is UP"

Hello all cyber friends,

I have to thank you all for your lovely messages of encouragement and support, it is really great to feel the sense of community.

So what has happened since the last update on Friday............ seeing mum on Friday afternoon she had made a very small improvement since the day before, still looking totally exhausted but I understand we can expect too much and this will be a long road to recovery.

We had a chat about maybe getting Dj up to see her soon as it had been nearly a week since he had seen or spoken to her, only problem being is that the plan was to end the epidural at 6am Saturday morning, I could sense the fear in trepidation in mum when consultant confirmed she would then be put on pain relief by mouth. Think we all had the same sort of feelings of nervousness as we know this has to happen to enable her to get some mobility back (epidural had made one leg virtually dead and unable to support her, fairly normal for extended epidural use) but also mindful of the fact it could lead her to be in extreme pain, although the doctors state this won't be the case. I rang in the morning to see if she was up to seeing Dj and to my relief she was, we all met up there on Saturday afternoon, mum had been switched to Tramadol pain killers, still looked exhausted but again a small improvement from the Friday, still has her sodium and saline drip in and drain for the wound but no longer required the oxygen mask to be on and BP had increased to around the 100 mark again and seem to be staying there.

Dj stayed for about an hour and then Leanne, Dj and left as he was going to stay at ours to give Rab a little break. All in all a great weekend, Dj got a new Ed Hardy hoodie and finally convinced him that jeans don't need to be uncomfortable, he tried a pair on and was very happy with them so a couple of new purchases and then on to Nandos to meet Loretta, Tony and Jake to complete the Nandos extra hot challenge (soak a chip in their extra hot sauce for 10/15 mins and then eat when you finished), Dj loved this and proceed to tell us it wasn't hot at all, think he takes after his father on that one as chili used to be a staple part of his diet. also managed to have movie night with popcorn and Avatar, Arcades, Wii and home paid Pizzas before coming back on Sunday evening. Al in all Dj was pleased to see mum, relieved more than anything I guess and pleased he could see we are not hiding anything.

Mums condition for Monday, Tuesday was fairly similar, physio getting her move a little, she rates her pain as now uncomfortable and not unbearable. Still remains very tired but just taking each day one at a time with short term goals, just a case of her resting as much as possible really now.
Her surgeon came up with a crazy idea over the weekend that she would be ok to go home on Monday/Tuesday, laughable really, anyway his registrar agreed this was crazy and discharge would be discussed later in the week, now set to be review Thursday or Friday, stoma team insist she won't be going anywhere until she is happy dealing with the bag. So just a bit of a waiting game at the mo but the end to phase 1 is insight and she promises me she won't be doing anything this side of xmas once she is back at home, luckily there are enough helpers around to ensure she does stick to this.

Rab, just wanted to say a special thank you to you, you have really stepped up to the plate to take care of things at home, the fact Dj is dealing with things so well is down to you, Nan and Grandad. As I've said this is only part one and a lot of work still to be done but we are all here to help.

Update you all again towards the end of the week with more news.

Love from James & DJ


Friday, 12 November 2010

Cool, Calm, Exterior .... Not quite the same inside!

Hello all,

Firstly thank you for all your kinds messages of support, I have printed these out and plan to take them with me this afternoon when I visit the 5 Star Hotel KC, she'll love your messages of encouragement.

Right... where were we up to?..... Following the surgery she was kept in recovery overnight, the following day she was then moved down on to a normal ward. This was good in one sense but worrying in another, good she managed to skip going to intensive care but worrying because the normal ward is far busier and care for about 35 people split between 2 or 3 nurses, now maybe it's just me but you would have thought having major surgery would at least entitle you to one on one care for a few days, oh yeah I forgot this is NHS care..............

Any one in the future that tries to tell me how good the NHS are is likely to get a punch straight on their nose. So many stories within the first few days it's a joke really, I won't go in to them now as I'll let mum do that once she is back home, but for example, whose bright idea is it to give a newly qualified Nurse 10 patients to deal with and also someone who has just had major surgery.

In terms of mum's condition, She is on constant epidural, once back on the ward she initially took a turn for the worse as her blood pressure dropped dangerously low, looked as white as a sheet, swollen face and she was carrying a temperature, their concern was she has picked up a small infection.
After monitoring her BP is was decided that they will do blood transfusion during Wednesday night, 3 or 4 pints I believe and start a course of antibiotics.

During this time I am portraying my normal cool, calm and collected exterior (those of you who know me then you know I'm so laid back I'm practically horizontal most of the time) but to be honest inside my stomach was in knots (no pun intended) but thinking of the bigger picture and showing mum and also Rab that I am confident things are going in the right direction. Surgeon came round to see her and again confirmed surgery went as planned and was done all through keyhole, in his words "no more cancer in you Carole".

Went back to the hospital yesterday afternoon and was totally relived to see her looking a lot more alive to be honest, colour back in her, face swelling gone down. She tells me she had a bad night and hardly no sleep, doctor stayed with her the whole night due to the low blood pressure during this time she overheard them putting a crash team on standby for the whole night, can't even imagine what that would feel like knowing you are in potential danger.

However the good news is that the transfusion seems to have done the trick as they are no longer concerned about her BP as now over the magic 100 mark, she remains very weak and as only awake about 30 mins during the 4 hours I was up there.

She did make me laugh when she woke up and said I should go as she wasn't much fun to be with, had to explain to her this is not a social club and I haven't come up there for the sparkling entertainment at Hotel Kings College, not her job to be the hostess with the mostess, I'm sure we can give her 3 months annual leave any longer than that then I think she is just trying it on.

love to all and will update you again after the weekend

p.s Shents I don't remember that game at all, already erased from my memory, lol

Oh and I better mention Wednesday's victory for The Arsenal against Wolves, 0-2 away victory with the superb Marouane Chamakh grabbing both goals


Wednesday, 10 November 2010

Feeling good...... things are "as good as can be"

Hi all,

Just a quick post to update everyone on the current progress of Mum.

Surgery was conducted on the morning of Tuesday the 9th November, I managed to speak briefly with one of the consultants involved in the opperartion and they confirmed that everything went 100% as planned and things are:

"as good as can be in the circumstances".

We got to see her about 5.30pm last night but she was still in her own little world, she seemed to think she had mosquitos on her making her itch, still not given up on the idea to run away somewhere hot then, unfortunatley a little bit late now mum, eh! lol.

Off to see her again shortly so will be able to fully update everyone with the full details in the next few days.

Thanks to everyone who has supported mum to this stage in the journey, you have all been such a massive help, you probably don't realise how much but all the family are eternally greatful. As much as we try and understand I think you can only have a proper understanding if you are or have been through the same troubles.

It's a relief she has had you all, hugs to you all for you kind thoughts and words

James xx

Sunday, 7 November 2010

Bags are packed and ........

...........still don't want to go......:-(

I'm looking at my packed bags and have none of the excitement usually associated with packed suitcases sitting in the corner just waiting to be hauled onto a train, plane or automobile.....Instead I'll be checking into 'Hotel' KC for an indefinite number of nights.

The ward sister called this afternoon to tell me that there is a bed waiting for me tomorrow on 'Cotton Ward' . Sounds nice eh, 'cotton': fresh, clean, crisp and spring like...
I'll more or less guarantee it's nothing like the description I've just provided but more on that once I've escaped their clutches.

So the plan is get there for tomorrow morning at 10am. Settle in and start the bowel prep, first sachet of disgusting tasting muck followed by one further sachet 6 hours later - then a few hours after that everything should be gone!

Surgery next day, Tuesday but don't know exactly what time yet - although I'm assuming it will be fairly early as it's a long op -minimum 6 hours if all goes well, could be longer if anything changes along the way.
Plan is keyhole surgery - but with the option to change to full open surgery if any surprises are found.

No visitors until James/Rab say so - I'm made it clear to them that this is my decision and I will see people only when I feel ready and not before. Sorry if that offends anyone but this is all about me, me, me now.
I'll see you when I've got my head round things.

James will be updating my blog - thanks James.

Don't know what else to say tonight really apart from thanks for all the support, kind comments, the statements that tell me I'll get through this in one piece (well, not exactly one piece, but you know what I mean....) and bye for now.

bbl8r (which means, be back later).....:-)

Friday, 5 November 2010

Been snappy and grumpy...

Been in a crap mood for these last few days. Everything has irritated me or just made me feel like I want to shout at someone :-(

Unfortunately for Dj he's decided to pick this week to also be a little grump (probably feeding off my stress).
Today, for the first time in the last 4 days, I didn't end up yelling at him for being cheeky, annoying, back-chatting or just really being a typical 11 yr old.
Today I bit my tongue and told him he'll be losing his Xbox for weeks if he continues with the back-chat.
He snapped out 0f it within 5 minutes - Don't you just love the power of technology :-)

At this rate he'll be glad to see the back of me for a few weeks......

Hospital appointments department rang today to 'remind' me about my operation next week...almost said 'Really? I'd completely forgotten all about it' :-))

So the current plan is that the ward sister will contact me on Sunday to confirm they have a bed (sigh) and if so, confirm what time I should aim to get there by on Monday to start my prep.

I want to run away and hide somewhere where no-one can find me - but I can't, unfortunately...

Monday, 1 November 2010

Halloween.....and Manolis :-)

Firstly Happy Halloween to those that do celebrate it :-)

We don't celebrate Halloween at all. Dj's never been particularly interested in it so we've managed to avoid making anything of it.
When he was younger he found it all too scary (Scooby Doo could scare him when he was little, so he had no tolerance level for ghosts, vampires and ghouls)

He does always have a pumpkin..... (to keep away the witches which he "knows do not really exist however, just to be on the safe side")...... and below, this is Dj's pumpkin this year.

He's lethal with a knife though and had to keep reminding him it's a knife not a spear!
He used to be afraid of using a sharp knife (blood phobia) but this year managed to cut the whole pumpkin out himself - without losing an arm...cool eh :-)

Also, today is Manolis' birthday. He's relaxing on the Greek Island of Rhodes with my lovely sister.
Happy Birthday M, hope you've had a brilliant day - much luv from us all