- 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..
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.
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..........