Life after surgery, but not as we know it.

Sunday 14th December 2003.

I'm home from hospital. Very weak, very tired, pretty poorly and bloody
glad it's all over. Below is the whole experience.

Post op day four. First time I've been capable of writing anything
down. It's not a diary, I'll do that later. It's just a list of notes
to write up -damn I'm struggling to write screwed up in this
chair.

1st december pre op day.

I was given less than two hours notice to go to the hospital.This was
brilliant because there was no time for last minute nerves. Karen and
Mary rallied and organised as I knew they would. They have been
briilliant.

I was surprisingly calm. I had a long bath in the evening and didn't
even try to go to sleep. I stayed awake all night watching telly. The
nurses were too busy to say much. If I had even the slightest hint that
the next five days were going to be as bad as they were, then I'd have
run a mile and never come back.

2nd Dec Tuesday

Op Day

I was the first one down. My surgery was listed to last all day. They
came for me at quarter to eight in the morning. I believe in spirit,
and I think someone was with me. I don't know who, but I should have
been hysterical, hell I was when I went for a simple D and C after
losing Angie, yet I was still surprisingly calm considering I was
convinced that I was going to die. All the time they were wheeling me
down the corridors, all I could think about was the fact that I'd had
no time to write letters to say goodbye to the boys.

I had to sit and curl my spine over so that they could fit my epidural.
The pre-op team were fantastic. They kept me talking and gave me
something straight away to make me very high and stop the panic
forming. That was good. I was scared but sensible before the injection
.. post whateveritwas I was happy and floaty and the world was a good
place to be. My consultant came out of the OR to talk to me, that was
nice of him but I don't think I made a lot of sensce and giggled a lot.
I grabbed his hand and said "Please don't let me die. I have an eleven
year old who needs me and I don't think it's meant to be my time." He
was very reassuring and his sincere face made me laugh again.

They must have asked me to lie down. They couldn't put me out cold
sitting up could they? But I don't remember anything else. I think
while I was talking so earnestly to Mr Ball, they must have done it on
the sly. Which is fine by me, that bit was all very painless. I don't
even remember Mr Ball's reply to me.

The operation wasn't without drama. Twice my BP plummeted and I had to
have drugs injected straight into my heart to keep it working.
Scary!

I woke late in the evening in the intensive care unit ? several times.
I was paralysed with epidural, very sleepy and shot full of drugs to
kill the pain and stop me being sick. "Hah," I remember thinking "this
is a doddle. Don't know what all the fuss was about."

Through the night I woke up more aware. The worst thing was the GN
tube. A gastric nasal tube was inserted through my nose and down my
throat. It's the tube that drained all the bile and post operative
debris from my stomach. I wish I'd had a dictahpone at that time to
describe the way it felt. I could have told you at that moment in
precise detail. Now all I can say was that it is one of the worst
things I have ever experienced. The words to tell you how horrible it
was have gone but the memory hasn't. It was hell. I'd like to tell you
what it's like talking, breathing and just 'being' around a 4mm tube.
It was awful.

They explained that they'd had to use the thickest tube for two
reasons. The first was that I had some quite large pieces of gore that
needed to be able to pass up the tube. The second reason was that my
stomach only has a 1mm capacity and the tube needed to be thicker to
keep the tiny pouch stretched so that it didn't shrivell up and heal,
leaving me with no stomach at all. That's a scary thought. Needless to
say it was bloody horrible and I wasn't so smug with myself for
long.

Through the night the vomiting began. At first I just felt very sick,
that lasted about an hour. Finally my worst fears were realised and I
threw up. Oh my God, I wanted to die. The first few times there was a
little bit of stuff to bring up. After that I had the most violent
wretching on absolutely nothing. It was exhausting. The bouts of
retching were so painful with each retch lasted over thirty seconds. I
couldn't breathe. Each bout had about five of these retches to
it.

Because of this I had my first major setback. Two years ago my uvular
(the soft palette and epiglotis) prolapsed.. The retching caused it to
happen again. My epiglotis was so swollen that It took up all my mouth
when it came through my windpipe and onto my tongue. The prolapse
completely blocked my windpipe and I was only able to breathe because
of the GN tube. I was rushed back into the operating theatre and under
another general anasthetic they stitched my uvular back into
position.

When I woke, all I was aware of was the Gn tube and my swollen
epiglotis. They were fighting with each other for a place in my throat.
Every time I breathed out my epilotis flopped onto my tongue and made
me gag. I continued to vomit with no result for the rest of the night.
The force of the pull on my stomach was tremendous. I know surgery is
meant to withstand vomiting, but if it was violent enough to dislodge
an entire uvular, what chance did my staples sutures have?

The second set back began that first night too, though wasn't a problem
at that time. Sometime towards dawn my first vein 'tissued' tissuing is
where the fluid going into the vein forces the vein to collapse. I had
plenty more veins and a new canular was fitted, no problem at that
point, but a sign of things to come The second canular lasted less than
ten hours.

The staff in ICU were fantastic. I couldn't praise them highly enough.
Nothing was too much trouble. They were caring and helpful. I had my
own one on one nurse who sat with me the entire time I was on the
unit.just less than 48 hours. All four of my nurses were
fantastic.

3rd Dec

post op day one

The beginning of the nightmare. While I was on ICU people were dropping
like flies. Three men in my view died during my waking hours, and I
slept most of the time. I slept between bout of the horrendous dry
vomiting. There was a serious RTA at tea-time on my second day on the
unit. They needed my bed and I had to be moved back onto ward 4 on
Wednesday evening. I have never seen neglect like it. staff morale is
terrible. They have no feelings of care or compassion for their
patients and the place is run on nervous energy and exhaustion. The
ward is understaffed. The nurses are overworked their standards are
sloppy and far too many corners are cut and mistakes made. I'm willing
to bet a months salary that my patient records were falsified. In fact
I know they were.

The staff have no time to give paitents even minimal extra attention,
just doing the essential jobs takes up their whole shift. I can fully
understand now how Iain was neglected and left to die.

This is the first time I've felt able to write and drugs have taken a
lot of details from me so this is going to be a conservative account of
the level of neglect and treatment bordering on abuse.

I class this as day two of my recovery, but they see it as day one so
I'll go by their reconing to save confusion.

When I was moved on to the ward I heard two nurses discussing my
operation, "Well I disagree with her having it on the NHS. Why can't
she go on a diet like the rest of us?" I was to lean that my op carried
the same level of stigma that abortions used to years ago.

The day before I had been too poorly to be bothered about a wash. The
next morning I asked several times if I could have some sort of wash
and was either fobbed off with a 'too busy' or simply told 'no'. I
asked for my anti-emetic, I was watching the time and knew when it was
due. They made me wait a further five hours before they gave me
it.

That night my veins tissued twice and doctors had to be called to fit
new canualrs. This was the start of me being refused fluids and
drugs.

By this point I'd told several people that I hadn't had my own
medication for my blood disorder. Nobody would listen to me when I said
that I needed to have it.

I was beginning to rash up and itch, but nobody was interested, they
were all too busy with much bigger problems.

That night was horrendous. I slept well until about two when they came
round to do my obs. I was still vomiting continually and fighting to
breathe round my tube and damaged throat. The doctor went through every
vein in both my arms and hands before fining one that was unsutable but
he said it might just hold for awhile. It was obvious that that too was
going to collape too at any time. I was paralysed from the epidural and
couldn't move myself at all. At 3 am I slipped down the bed and lay
flat on my back pooling in my own bile. I was stil retching violently
and this was worse with lying flat. My nasal tube had come lose and I
was very sick. I was filthy because I hadn't been washed and by now my
rash had broken out all over my body and I was driven demented by the
itching that I couldn't move to get to.

At eight o clock they finally found the time to move me into a hard
backed chair. I didn't sleep a night in the bed again all the time I
was in hospital. That chair was to become my prison.

At this point I had received no drugs or fluids for eight hours because
my veins had tissued so they couldn't use the drip. The unit that
controlled my epidural broke that morning. The switch was faulty and it
was only working eratically. Gradually the epidural wore off, and the
pain leaked in.

At eleven o clock I was given my first wash. I mentioned my rash to the
nurse and she refused to wash me because she said it looked like a
severe case of scabies. I had to manage as best as I could on my own. I
explained again that I hadn't had my medication and that was causing
the rash not scabies .

My Gastric nasal tube was still lose. By now the bandage had come off
it. It smelled of bile and inffection and hung under my nose all day.
The tube had come out of my nose by a good six inch. I hadn't had my
blood disorder meds for three days. When I inhaled the tube moved in
slightly and when I exhaled it let out again. The constant friction
against the inside of my nose caused it to swell, my eyes blacked and
the friction against my uvular made the swelling in my throat worse. I
was still being very sick.

The physios came round and were annoyed that I'd been left to sit in a
visitors chair. They stole a huge leather recliner from the day room
for me and I haven't moved out of it since.

I had the first signs of pressure sores on my bum and my rash was
violently red and beginning to weep.

I couldn't turn myself and because of the neglect in there, I refused
to go to bed that night. I made enemies of most of the staff. I don't
mean to be difficult, but I know when things aren't being done
properly. They won't help me if I slip in the bed so I won't use
it.

I had learned by this time not to ring the bell, they don't like it.
Through the night I had to call for assisstance. I was struggling to
breathe. My nose had swollen closed with the lose GNT. I was vomiting
and had gone almost 24 hours on only one unit of fluid and intermittent
epidural because the machine only worked some of the time.

They sent me an untrained HCA, she was worth ten of most of the trained
staff on ward 4. She couldn't do much bless her. But she tried
uncussesfully to fasten my nose tube up. She brought me a tray of ice
to cool my flannel and helped me put my flannel on the worst affected
areas of my rash. She asked me why I hadn't told anyone about my rash
before it got so bad! She was the first bit of kindness I received on
ward 4. Just having someone to talk to for a few minutes made a world
of difference. I couldn't say much because the tube stopped me talking
and made me heave if I tried, but her just being there was nice.

I had to have my GN tube re-fitted today. I cannot expresss how awful
that was. Normally when people have one inserted it is passed down
through their nose while they drink huge gulps of water to help swallow
the tube down. Of course I couldn't do that and had to just keep
swallowing it dry. My throat is still very swollen and he had to force
the tube through the swelling. I gagged plenty. It was horrendous and
left me feeling very sore and ill.

Saturday 6th Dec

This morning I woke up de-hydrated. I have had just ONE unit of fluid
in three days. I should be on six units a day. Fed continually through
a drip. I was in a lot of pain because the unit housing my epidural had
not worked for hours. I had been asking for some medication for six
hours. My rash is foul. It has opened and become infected covering my
entire body. I have asked for a wash six times and been ignored. I am
low. The smell of infection coming off me is unbareable. For the first
time I've suffered crippling heartburn due to the loss of my
drip.

I couldn't believe the duplicity of the nurses when Mr Ball did his
rounds this morning. The sister gave the eye to one of the nurses to
get a unit of fluid quick. The nurse tried to change the drip bag
quickly, pretending that it had only just emptied. It was not only
empty but the regulator was TURNED OFF. Sister glared at me when I told
Mr Ball that I had been without fluids IV for three days. I added that
my epidural pump was faulty and that I had been denied pain relief and
had gone completely cold turkey. The nurse got a right bollocking. I
was beyond caring. The nurses run the hospital, the doctors have no
idea of what goes on day to day. The nurses have become dispassionate
and careless. Mr Ball said that he thinks we've come to the end of the
road with the nasal tube. I was still retching constantly. The swelling
to my nose had blacked both my eyes and my nose was completely closed.
He said that the GNT was to be removed immediately.

Mr Ball came round at eleven o-clock. I was unwashed and stinking with
the infection. I didn't see another medical professional until five
fifty-one. They hadn't done my three or five obs. And yet later they
appeared on my charts.

I finally lost my temper in the evening. I'd been waiting for some
drugs, fluids and to have my NGT out all day. I hadn't even had a wash.
They told me a doctor would come from Casualty when he could get away.
I understand that the doctors in partucular are very busy and can only
come in between emergencies. I know that. But it seemed ridiculous that
I was still waiting from eleven o-clock that morning.

Three days earlier my canular had tissued for the last time, but nobody
in three days managed to find the thirty seconds it would take to
remove the redundant canular. My arm started to get very sore. It began
to swell. At six o -clock I rang to tell them my arm was swelling. I
rang again at seven and eight. At nine my arm was the size of a marrow.
By this time I'd taken it upon myself to take my own medication because
nobody would do a bloody thing about my rash. They wouldn't even help
me to keep it clean. The doctor had prescribed something IV, but of
course I had no IV to put it in so I hadn't been given it. The smell
from the weeping sores was horrible. I removed the canualr from my arm
myself.

Sunday 7th Dec

I fought with the nurse this morning over my anti-emetic. I have to
take my rhesus disease medication. I have no choice. It's a tiny tablet
but I'm having to chew it to get it down. The taste alone is foul. I
have to take this tablet first thing in the morning. I have almost no
stomach left and 'normal' people are advised to take this medication
with food to save upset to a normal stomach. I need all the help I can
get to keep this medication down. Today she refused me an anti-emetic.
Apart from my rhesus meds, I am completely drug free at the moment. I
did so long without my epidural that I figured I didn't need it. to
hell with them. So far so good it hurts like hell, but I'm doing okay
it's just about bareable most of the time. I am written up for
anti-emetics every four hours. I only had one yesterday and none today.
They are refusing me them despite the doctors instructions.

I am concerned that I've only been given two half units of fluid in the
last four days. Today for the first time, I've been allowed small sips
of water. That literally means three tiny sips every couple of hours.
Less than 30 mils of fluid every 24 hours.

I had my first bath today. They made me walk down two long corridors,
but I didn't mind, it was good to be up and moving. Their intention of
course to make me walk with the reward of a bath at the end of it.
Karen had to move away from me last night because she said the smell of
my infection was so bad that it was knocking her sick. I enjoyed the
walk. But making someone this poorly walk as far as that was asking for
trouble. I went dizzy a couple of times. Half the distance would have
been appropriate for a first time up. There was no way I was going to
give them the satisfaction of me complaining though. I enjoyed the
challenge. The bath was wonderful. It was far too short. The staff were
too busy to allow me time to soak and enjoy it which is understandable.
She didn't even rinse me properly and left soap and shampoo on my hair
and skin, but I'm not complaining. I stunk like a dead rat and just to
sink into warm soapy water and get clean was the most marvellous
feeling. The walk back was a lot easier than the walk there had
been.

I was up again five minutes later. I got up without permission,
gathered all my 'shopping bags' catheter and two drains and wandered
down to the bathroom to brush my teeth and bursh my hair. For the first
time since my op I feel like a human being. Today is Sunday, the last
time my teeth were cleaned was Monday night! I'm seriously concerned
about my lack of fluid. I'm a nurse, I know that another three, maybe
five days without fluid and my kidneys are going to go into failure.
The docotrs have no idea that I'm not being given any fluid. I can't
fault the doctors, they are wonderful, but the hospital is run by a
shoddy and careless nusing regime. My records have been falsified to
show pain relief and fluids that I haven't had. I must see a consultant
to make them aware of the fact that I have not been given anything for
days.

I have had my GN Tube removed. I disgraced myself by almost hitting one
of the nurses. I'm very ashamed of my behavior. The nurse in question
is a bit of a bitch. She came to take the tube out. Grasped it with two
hands and pulled with far too much force. A GN Tube should be removed
in a smooth fluid movement, not an almighty yank. As she pulled the
pain was unbelieveable, my hands came up reflexively and grabbed both
her wrists. I used force to push her backwards and raised my fist to
her and told her that if she came near me again, I'd hit her. I took
the tube out myself. It hurt but much less than it had when the nurse
pulled it. I feel very bad about the way I reacted. It was instinctive
temper but it hasn't done me any favours with the nursing staff. I
appologised afterwards but she was having none of it and filed a report
against me.

The good news is that finally, the vomiting seems to be over. Being
released from that tube is brilliant. The swelling is receding in my
throat and I feel 150% improved on the last few days. The past five
days have shown me a glimpse of hell. I've never been that poorly
before and thought it was never going to end.

I felt wonderful for a whole three hours. And then ? somehow an African
elephant got tangled up in my insides. It began at about lunch time
with contractions as painful as any birthing. I thought I was going to
have dihorreha and disgrace myself all over the chair. I grabbed all my
paraphenalia and almost ran for the toilet, some fete with 76 staples
holding you together. I sat (carefully) and waited to give birth to the
elephant. Nothing happened but I still felt that something was going to
at any second. I sat for over an hour and a half. Nobody noticed me
missing and staff only came to look for me when concerned patients on
the ward rang the bell to say I'd gone missing.

While I had been sitting there had been a staff roation. A new ward
sister came into the toilet. She is called Paula. That lady is the
first 'nurse' I've seen on that ward. She is brilliant. She's
efficient, friendly, gets the job done and still has time to see that
everyone is all right. If she can do it why can't the others?

"You all right love?" she asked. She was the first kind nurse I'd
spoken to. She gave me two suppositories and told me to hold them for
quarter of an hour. .. no chance. I managed all of five minutes. All I
lost was the suppositories but the pain had eased dramatically. Paula
just laughed and wasn't annoyed with me over the wasted
suppositories.

The infection is worse. By mid afternoon I was smelling terrible again.
I decided to lie on the bed to try and clean myself as much as
possible. All I had was pampers baby wipes that Karen bought me. I
hardly use my bed at all, and with all the sitting in the chair the
infected areas of my back and bum aren't getting any air to them.
Therefore they are becoming more and more infected. Nobody is doing a
damned thing about it. I should be having three salt baths a day. I
should be given antiseptic creams. My whole body is covered in open
weeping sores and I'm just left to sit in them. I cleaned myself off as
best as I could and lay with just a sheet over me and the curtains
closed.

Mary came to visit me and five minutes later Karen came with the girls.
I had to ask them to cut their visit short because the awful stomach
pains came back. I felt as though I was going to have terible
dihhoreah. This time I didn't dare move. I didn't feel that I'd make it
to the bathroom in time. Reluctantly I rang for a nurse. I don't use
the bell at all if I can help it because they don't like it and get
quite nasty. Nobody came for twenty minutes by which time I was doubled
over in agony and felt awful. I explained the situation and the nurse
brought a commode to my bedside. I have never been so humiliated. I had
to 'go' right there behind my curtains with all the other patients and
visitors there. I did go as soon as I moved but for all the pain and
effort all that I produced was a tiny little bit of 'rabbit poo'.

My wound is exposed now. I have no dressing on just a spray of plastic
skin. Ugh it's ugly,. It looks like an enormous vagina stitched
together. It's eleven inch long and raised. Thankfully it's nice and
clean and healing well. It's about time something went right.

All hell broke out last night with Cli and Mark. Mark has been telling
horrible lies to Cli about Mary. Basically he doesn't want to stay with
Mary because she is strict with him, he wants to go and stay with Cli.
I can't blieve the lies he's told and I'm very disappointed with him. I
know he's having a hard time with me not being there but this one time,
I need him, to be good for me. I can't do anything sitting here and the
worry isn't helping things. I had enough money on the system to allow
me two days television. I haven't bothered with it so far but the
sleepless nights are so long that I think I might start watching telly
through the night. I had to spend the lot on phone calls to Cli and
home to sort Mark out. He has been saying the most horrible things
about Mary and now about me as well. He's told Cli that Mary and I are
cooking up lies to stop Cli seeing Mark. For the second night running I
was ready for caling a taxi and leaving here to go home. Mary has bent
over backwards to be good to Mark and he re-pays her with ingratitude
and lies. He hasn't been brought up that way. I'm making allowances for
the fact that he's traumatised by all this but I'm still very, very
angry with him.

Paula went off at nine o clock. Before she left she came onto the ward
and said that she was leaving but asked if she could do anything for
anyone before she left. I swear that is the first time I have heard a
nurse on ward four ask anybody if they need anything or want anything
doing. All the ladies on the ward are geriatric. I've started to get to
know them since the vomiting stopped. Before that I wasn't very
sociable and just wanted to be left alone to die. They are nice ladies
and I get on well with them all.

I decided to try and sleep in the bed tonight for the first time in
days. I'm far more mobile now and can move myself up the bed a bit if I
get stranded. I wanted to lie on my side but I can't because it's too
painful. I had to lie on my back which is alien to me. I slept well
from eleven until one, but from there it was fitful and restless. The
ladies asure me that I don't snore. I think they were politely lying.
However, at four o clock apparently I started yelling and moaning and
making a right old noise. Olivia said it was alarming and entertaining
in equal proportions. She said it was really funny and that they
weren't in the least annoyed with me because it gave them a bit of
excitement. Bless them they are all over seventy. God knows what I was
dreaming aobut.

After that I gave up and went back to my chair. My catheter has caused
me problems again through the night. I get this enormous urge to pee
which you shouldn't get with a catheter. This is accompanied with a
horrible burning like cystitis when water and blood are passed through
my eurethra. It knocks me sick and makes my eyes water until I have
tears streaming down my cheeks. It's very painful. I waited for two
hours for a nurse to come and empty my bags and I mentioned the pain to
her this is her exact reply in a hostile tone.

"Oh well, you won't have them for much longer will you?" with that she
took my bags and waltzed off.

That perfectly sums up the standard of care here. Okay, maybe nothing
could be done about it, but a few kind words would have helped.

8th Dec Monday.

Had a bad night. Woke up depressed and worried about Mark. I want to go
home. I am scared all over again. I've had no fluid for five days. My
rash is out of control. The infection is weeping and stinks of decay
and filth. Nobody is interested. I am terrified that my body has
rejected the ton of metal inside of me. I have seventy-six staples on
my major external scar alone and that's only on the outside of me. I'm
still stinging through my catheter and feeling as though I need to pee.
I'm passing a lot of blood.

The first doctor I saw today was Ade (pronounced Arday) He's the
gorgeous doctor who does my canulars. He takes it personally when my
veins reject his handiwork. I want to make it known at this point that
at no time during my recovery, even when I was vomiting every minute,
have I been incapable of flirting. Ade is brilliant (and knows it) I
don't think there's a female nurse or patient in the hospital who isn't
a little bit in love with him. He's a big old tart and flirts
outrageously with everyone. When he comes on the ward he is like a
single raindrop in the fire of hell. Kaz bought me a nightshirt with
sex kitten on it. It's her idea of a joke. Ade thinks it is brilliant.
Let's just say you'd have to go a long way to find anything less sex
kittenish than me at the moment. Stinking, beached, and with a vomit
bowl never far away.He calls me Sex Kitten now and we have a
laugh.

He was horrified when I told him that I had only had three sips of
fluid three times a day in the last five days. Finally someone believed
me despite what my chart says. I talked to him straight and told him
that I wasn't delirious or given to lying and that my chart had been
falsified. He decided that I'd have to have a central hickman line
through my chest in case I needed any drugs and that I'd have to have a
line into my abdomen to take fluids as they couldn't go through my
veins. It was painful and uncomfortable having the lines fitted. Ade
joked the whole time and I tried to keep up my end of the banter but it
was difficult. He'd heard about my outburst with the nurse when she
yanked my nasal tube and asked if he'd have to fit the line in boxing
gloves. He wrote me up for six litres of saline every 24 hours
effective immediately. Then he went to play hell with the nurses.

Mr Ball did his rounds some time later. He is thrilled with my
progress. He said that I have an amazing tolerance to pain as I'd had
no pain relief at all. I said that It wasn't a tolerance to pain, it
was an intolerance to vomit and I wasn't about to risk anything making
me sick again. I'd rather have pain that vomit any day.

The brilliant news of the day is that my two drains and my catheter can
all be removed. ? Yeeeeees. Of course it tok the nurses another four
hours to come and remove them. It was the same nurse who had failed to
remove my GN tube. I asked for someone else and said that I had no
confidence in her abilities, but she said that as my allocated nurse it
was her or nothing. I told her that I hoped she was more gentle with
drains than she was with tubes. It hurt but wasn't too bad. The bliss
of being disconnected from all mechanical devices was fantastic. I am
free to walk about without having to carry all my bits of tubing and
bags with me. A sure sign of improvement.

The nurses went against the doctors direct orders and despite the new
line to put them through, they still refused me IV fluids. One silly
bitch, a grade two no less, said "Just drink a glass of water an hour
and you'll be all right." What! My stomach will hold exactly three
small sips. I can't believe the ignorance of these people. This is a
trained nurse, she knows that I've had 98% of my stomach and intestine
removed. How the bloody hell do they expect me to hold the capacity of
a glass of water?

I saw Ade in the corridor later and told him that they'd still refused
me fluids. He went mad. There was a hell of a row between him and the
nurses. There was no respect there. The nurse who told me to drink was
arguing with him that I didn't need fluid. This was a grade two nurse
agruing the toss with a house registra and him letting her. Anyway Ade
won of course and after just two hours of tubular freedom, I was
hitched up to a drip again

.

I am very unhappy and upset. I am being discriminated against because
I've been awkward, spoken up for my rights and because the staff don't
believe I deserve a bed on the NHS for this op. Maybe they don't know
that I was only offered the op because of my heart condition. Everybody
on the ward was offered a bath this morning. They missed me out. I
asked if I could have one and they said they wouldn't have time to give
me one. Why? I can walk to the bathroom and then I get chairlifted in
just the same as all the geriatrics? I take no longer or anymore effort
than the rest of them. Why can't I have a bath? Everyone else got
theirs. Lucy, bless her, even told the nurse that she would go without
hers so that I could have one. I was given a bowl of almost cold water
and just left to it. I need a bath more than any other person on the
ward because of the open infection I have. I think that's the crux of
it. They don't want to have to wash me because of the infection and the
smell.

Paula came on at three. She said my rash was the worst she'd ever seen.
She had taken it upon herself to order me some cream. I had been asking
for something for four days. Nobody provided anything and Paula came on
duty armed with Aqueous cream, Betnovate, and an anti-histemine cream.
She said that if I gave her a bell after my visitors had gone she'd
help me to wash and cream. I told her I'd been reufsed a bath and she
was furious. She asked for the name of the nurse and put her on a
report. She said that every patient has a basic right to personal
hygiene. As soon as Kaz left, as good as her word she dropped
everything and helped me to bath and cream. She said that when she's on
duty I can have three baths a day if I want.

Karen, Mary and Mark came to see me. Mark says that Kali is pining for
me. That makes me so sad. I want to go home so much and can't see me
staying here much longer.

9th Dec Tuesday

Another long night. We had a new lady brought in. The lady is senile
and 'shouted' all night. I started the night in my bed but was back in
my chair by midnight. Give them their due, my bitter complaints of
yesterday had some effect. I was first on the bath list today. I washed
in aqueaous cream and was left alone to soak for ten minutes. I could
have had longer, they said to take as long as I needed (there's a turn
up) but the air had a high chill factor. The nurse washed my hair and
finished me off with a power shower, which hurt a bit over my wound,
but still felt wonderful.

Big news of the day. I've been given my 'food'. I am expected to live
for the next three weeks on fortisips. For anyone who has never
attempted one of these culinary delights, they are like a milkshake
made up with vitamins and nutrients. All I have to do now to qualify to
go home is be able to take three of these hateful things a day and
increase my fluid intake to two litres in 24 hours. Shouldn't be so
hard. In eight hours I've managed only 2/3 of a fortisip and just 30
mils of water. I just can't get them down.

I feel really well. My mobility is much improved and I just want to go
home. They are saying I'm going to have to stay at least another eight
or nine days until my diet improves and my stitches have come out. They
also want me to see a ermatologist while I'm here and he only has a
clinic on a Monday almost a week away.

I don't know if I can live on these shake things, they really are
sickly and horrible. They make me feel sick.

I did something very naughty yesterday. I've kept asking if I can be
weighed. The staff have refused because they said that If I wiegh too
early I'll only be disappointed and it might set-back my recovery.
Yesterday I went for a wander. As I passed the scales they called out
to me. I couldn't resist having a do. Are you ready for this? I have
had almost all my stomach removed. I nearly died four times. I have
been more poorly than I ever thought it was possible to be. I haven't
eaten a thing for a whole week ?Ready? ? I have a grand weightloss of
exactly ONE POUND. Hell, I could have lost that by cutting out my two
slices of toast in the morning. I'm assured this is because of all the
swelling. The weight (and fat) will drop dramatically when the swelling
goes down.

One bloody pound!

My rash is worse. I'm seriously terrifeied that my stupid blood
disorder has caused my body to reject the op. The doctors are panicking
about my rash now I think. They are certainly taking it seriously as
last. I have been put on Piriton as well as my own meds. I have a temp
of 38.9, my body is a mass of boiling agony. The only thing that
encourages me that everything might be okay is that one of the nurses
pointed out that the top six inch of my actual scar is hardly affected
by the rash and would be much worse if metal was the cause of it They
recon it's just my Rhesus Disease reacting to the huge stress of the
last two weeks. They could be right I suppose, but for the time being,
until proved wrong ,I'm clinging to the morbid thought that my insides
are falling apart.

10th Dec Wednesday.

Things always seem worse at night. At 2 o clock in the morning, as I
write this, I know that after tonight I cannot spend another night in
this hell hole. It's such an uncaring place. One way or another I'm
going home tomorrow.

Yesterday when Anne was putting me in the bath the hoist mechanism
stuck and she said "Fucking hell" three times. It didn't bother me, but
I thought it was horrendously unprofessional. Last night when the lady
opposite was shouting about being thirsty. Two separate nurses said
that they would bring her some swabs to do her oral hygiene. Neither of
them did and the lady went all night without it being done. It should
be done every hour immediately after an op. I watched them take her
bell and put it right up out of her reach. That is illegal.

The lady in the next bed has just struggled to get up. She wanted to go
to the toilet but didn't feel up to it. She is elderly and very shakey
on her legs. Like me, she has learned not to bother the staff. There
was a nurse in the room when she told me that she didn't feel up to
walking to the toilet. Admittedly the nurse was attending another
patient. However she saw that it would be unsafe for this lady to walk
and chose to do nothing until, I said that she needed help now and it
might not be a good idea to just ignore her. The nurse reluctantly
brought a commode to her bed.

I cried tonight. Partly from the pain from the burning and itching and
partly from the neglect here. I have told several staff that my rash is
worse. Also tonight my drain hole has become infected, there was a
stitch left in it that I had to point out to a nurse before she'd
believe me. It is running with green and yellow puss and they won't
even dress it for me. It's sticking to all my clothes and I'm having to
change my nightshirt every time I stand up.

Tonight I asked to see a doctor which is normal procedure if a patient
scores three or more on their chart. My rash, my drain site and my high
temperature would warrant a 3 score. They haven't asked for one to come
and see me. I have been medication free for several days apart from my
rash stuff and an anti-coagulant injection. Last night because I'm
hardly sleeping at all, I asked for a sleeping pill ? what did they
give me? 2mg of Diazepam! They might as well have given an elephant a
smartie to suck. Tonight I explained that it didn't touch me at all and
that I needed something stronger to help me sleep through the burning.
Da-daaa I got 4mg of Diazepam. I'd need about 20 mg to have an effect.
I took them, but here I am three hours later wide awake and in
agony.

They said they would bring my medication down to me as soon as the
doctor had signed off the stronger doseage. I waited from ten o clock
until midnight, then I went down to the nurses station to ask if the
doctor had been on the ward yet. They'd had it for me since ten past
ten, but hadn't bothered to bring it down to me. I won't sleep tonight,
I'm very depressed and miserable.

I can't bath myself yet. I'm quite capable now but they won't let me in
case I fall. Fair enough but it would be so nice to be able to bath
when I want to. Every hour I'm going and sitting for five minutes on
the bidet. I have pressure sores on my bum as well as the infection so
that soothes it momentarily. With sitting almost twenty four hours a
day in this chair it's getting to be a hell of a mess.

I hope Mr Ball will let me go home tomorrow. I've made up my mind that
I'm going to discharge myself if he won't which may well affect my
future care. I just hope to god this rash is due to post op stress due
to my RD and not metal allergy. My greatest fear is the possibility
that I might have to be opened up again.

Julie (Staff nurse) has just come over to talk to me. I feel guilty. I
was very sharp with her and told her that I feel neglected and that the
nursing standard here stinks. I told her I'm not staying another night
here because this is torture. She was very good. She did nothing to
help with the pain, but she talked to me and she listened. Nothing's
changed, I'm still homesick and in agony but having someone speak to me
for five minutes makes such a difference. They never have any time to
just talk to the patients for a couple of minutes and that's wrong.
It's a huge part of the job and important to a patient's recovery. When
one of them makes time it's appreciated. I don't mean to be difficult.
I hate turning people against me.

I wish I had someone to back me up on this. Over the past year I have
slated the police, the press and now the hospital for unprofessionalism
and corruption. Every single allegation is true and I stand by each
one. It seems that everything around here is tainted and corrupt. Is it
just here or is it everywhere?

Julie said that apart from my rash, my recovery is remarkable. Which is
true. I am doing pretty well apart from the rash, temp and infection.
She said that if this awful titanium war that I'm imagining really was
being waged inside me, then I'd be very, very poorly. Which I'm not.
One of the first symptoms would have been anaphalactic shock. She put
my mind at rest a bit and brought back some common sense that I could
have worked out for myself if it was someone else who had turned into
the elephant man over night.

I just want to go home now. I hope Mr Ball will agree to it He wants me
here at least another week. There's no way I'm spending another night
in this place. I'm going home tomorrow.