Continuing
on from my last blog.
Mr Farah wanted to send me home Monday afternoon or Tuesday,
Andy wasn’t happy about this as it was clear I needed assistance at home now
such as, walking frames, something to sit on in the shower as I cannot stand
unassisted for more than a few minutes now.
The hospital has an occupational therapy (OT) team that assess you and
then supply such items but it takes a day or two hence why Andy didn’t want me
discharged until these items were set up home, he'd had two stair lifts
installed ready for my homecoming. (Andy
here quickly) The above few words and
acts when you are in the position of ‘patient & family/carer’ are unsettling.
I’d say to NHS staff, you do a fantastic job but you need to communicate things better to ‘us’ (all
patients). The situation was this, Mr Farah says you can go home Monday or
Tuesday but no OT provision had been made. When raising it later with Alison
our specialist Nurse she points out that the Surgeons don’t necessarily
understand that other things need to be actioned before a patient is discharged
but as a patient how are we to know the Surgeon’s word isn’t final? This caused
us significant stress, avoidable stress IF the following had happened.
IF during
the days post-surgery someone had said
to Julie or myself during the recovery period. “Ok at sometime you’ll be seen
by Mr Farah who will agree a discharge date however this in effect means he’s
finished with you for now and is happy for you to go home, WE still have to
assess you and sort out physiotherapy and Occupational Health equipment for you if needed and ALL this WILL be
sorted BEFORE WE SEND YOU HOME” Not that difficult is it really? Please I beg, give
this some thought..
OK, I’ve wrestled
the laptop back from froggie ;}
Late Monday
morning, I’m wheeled down to OH where they have a room of equipment, I needed
quite a bit. I needed the following:
·
A
frame for around the loo to enable me to push myself up.
·
A
walker/trolley that allows me to move drink and food from the kitchen safely to
the lounge or dining room.
·
A
shower stool
·
A
frame to clamp on to the bed so I can push myself up off the bed and to help me
turn over in bed.
·
A
walking frame for on the first floor
·
A
walker to help me when I’m outside on any short trips.
·
Risers
for the sofa legs to help me with getting up and standing
Quite a bit
and it’s only when you get to the stage I am at that you realise how dependent
you are on items like this to have a quality of life. The alternative would be
to be stuck in bed, maybe a commode that someone has to ‘deal with' after. As fit and healthy people we take so much for
granted.
Later in the
day the physiotherapy team made me a support/brace for my left leg to try & help
what is now being referred to as ‘Drop Foot’..
Tuesday, I
got hit with another seizure! I hit my bell Nurses came running, this was scary
again for them as well as me, this time it’s a whole different team so again
they have no idea how to deal with the seizure or with me. At one stage there
were five Nurses, I had to shout for some of them to leave and to stop messing
with the blinds/window. If you are reading this and were one of the Nurses, I’m
truly sorry but I could not cope with the ‘fuss’ and noise, for me I need quiet
and calm not to feel a sense of crowding and panic. It’s scary that the seizures are still here
after my surgery, perhaps now this is after all Epilepsy, I don’t know, I know I am scared by them.
Wednesday
morning comes and Andy calls me around 8.30, all of the OT stuff has arrived.
“You’re coming home tonight hunny” he announces he was collecting on his way
home from work.
Wednesday
evening and another amazing Staff Nurse, Joanne, was looking after me. In an 'Oliver
like' approach Andy went to the Nurse’s station “Please may I have my wife
back?” he said with a grin. My drugs needed sorting out first, not long to go
now.
Andy filled
my case with my belongings. He took a couple of trips to the car so he could
focus on me when I could be finally discharged. Joanne was sorting out my drugs
for me and explaining my dosages. Not much had changed except for the infamous steroids. I was to be
weaned off them! YAYYY! Goodbye steroid bloat
So all drugs
on board, I got a hug from Joanne, she tells me I’ve been the perfect patient
and I’ll be missed. Andy had me sit in a hospital wheel chair he’d procured
(don’t ask) and he wheeled me down the corridor as I said goodbye to other
staff. I’m excited to be going home but I’m also frightened of losing the
comfort blanket of Cairns Ward. We get outside and OMG its BLOODY COLD!! Thankfully the car is
warm and I manage to get in it with no real problem. Andy left the engine
running and the heater on to keep me cosy as he returned the wheelchair, as he got back in the car we hugged & had a kiss.
As we
arrived at ‘Shute Manor’ I felt a sense of comfort but I needed to be inside on
my chaise! Andy supported me and helped me in to the house, we have a few steps
up into the house, I’m already thinking this is going to be an ongoing
challenge. With Andy's assistance I’m soon on my comfy chaise
looking at a room full of OH aids, the Chaise had been raised around 3 inches
to assist me getting off it, it’s great, I have a better view outside now!
Aaah my first cup of tea, Andy shopped on the way to the hospital, it's bad news when he shops, he buys
more than we need and stuff we might never use or eat. I normally send him
shopping with a list like a school boy hehe. (Can’t be trusted). Anyway he
leaves me with my cuppa and cosiness whilst he unloads the car.
I’m tired
and already dozing so Andy suggests we try out the stair lifts, I agree but
with a degree of apprehension, I don’t like the thought of being out of control
even though I know climbing the fourteen large steps would be like me trying to
climb Mount Everest right now. There is
a seat belt on the stair lift and its swiftly fastened. Andy gives me a crash
course on using it, seatbelt on and I am gliding to the first landing. The stair lift seat
swivels so I am now facing the wall but its difficult to get out of, I grab the
banister rail and reach for the wall in front of me but I am not going to reach
it unless on my feet. Andy had to help me. Holding the wall and door frame I
entered our loo, Andy had already put the loo frame in situ. It turned out it
was too high but its easily adjusted. The relief of being able to stand up with
ease is a great comfort. As we left the loo, I looked at the second stair lift
which goes up just three stairs and think to myself we can soon get rid of this
when I’m better. Within a few days I now realise three steps or not this is
vital to me for now, it makes my life so much easier. Yes I hope I’ll improve
enough to cope without this but for now, I’m pleased it’s here.
Yay! I’m on
the bedroom landing and there is a walking frame here waiting for me, I
struggle off the stair lift seat and grab the frame. We go in to the ‘Red Room’ yes lol all the
bedrooms in ‘Shute Manor’ have a name and a name plaque on the door, it’s me,
I’m quirky ok lol, When we have no visitors this is our dressing room, we have wardrobes in here, we have none in our bedroom (The Green Room). So I undressed
with Andy’s help, I cannot take off or put on my left slipper/Shoe/Boot so Andy
has to help me. I’m soon ready for the next part of my decathlon, now it’s the
walk (with the frame) from the red room to the green room and MY comfy bed!
It took
around five mins to complete this manoeuvre and Andy had to ‘lift’ my left leg
in to bed, I have no strength or control over it in this position. I’m soon
covered in our quilt, Andy took all of our worn clothing to the laundry room on
the next floor up and put another wash on. I know I am going to have to make
some recovery to make the 14 steps up to the top floor but I WILL make it one
day!
Andy came
down and slid into my comfy bed, I was dozing already, and there is no place like your
own cosy bed! I put my arm over him, told him I loved him and I thanked him for
all he’s doing for me. I get told to shush as he kissed me and told me he loved
me, I’m as close to heaven as I want to be right now thank you.
Next morning
the first of my Julie sitters was with me, one of the secret agents haha, she
arrived at just gone 7.45, Andy is off to work. We have fun but also chill on the
sofas in the lounge.
Friday it’s
my amazing friend Xena who travelled from the outskirts of Liverpool to be our
side of the Mersey by 07.00! Andy collected Xena from a nearby train station,
I’m alone for five minutes, an extremely scary five minutes! I had my panic
alarm buzzer & phone but I still felt vulnerable. Andy went off to work, we had fun
watching DVD’s and snoozing. Andy came home and we drove Xena home, again I’m
scared to go out, Andy though is committed to ensuring I am not alone and that
I’m to live as normal a life as possible.
Friday night
I confessed to Andy that yes, I did need a grab rail on the top of the stairs
so I could pull myself off the chair lift. “We’ll sort it tomorrow hunny”. Ha
that normally means in four months with Andy hehe.
Saturday
came and we are still up early because of my steroids plus Andy wanted to get
his hair cut, he looks like a mad professor again now so we need the barbers. I
love the girls at this barbers and yes the lower part of the salon is a lady’s
hairdressers. Jen one of the team came to my wedding and did my hair for me, we are great
mates. Anyway breakfast long done, we need to shower and dress. Next stop is
BarberAnne’s, as we approached the busy road outside was full of parked cars
despite the yellow lines. Andy said “We’ll come back”, Our next destination I
hadn’t a clue about. Andy took us to a close by mobility aid shop on the
pretence of getting the grab rail. Ultimately it was to sort me out with a
wheel chair, I realise now just how weak I am and whilst I can walk very short
distances it would not be fair on me or anyone else with me to walk around town
with my stroller, I can barely cover 10 yards at the moment, I want to improve
but right now truthfully I am not convinced I can or ever will. So we try a
wheelchair and test ride it around the showroom picking up a grab rail and a
cushion on the way. The wheelchair is lightweight with smallish wheels on it, I
have to be pushed in it. I smile ironically as Andy is paying as we are told items
are VAT exempt if you are terminally ill….. So I saved us around £40..
By now lunch
time was approaching, I said to Andy that I would like fish and chips in the
car on the sea front, so we headed down to New Brighton and spent a couple of
hours eating our lunch in the car 'people watching' and watching the ships enter
and leave the Mersey. I’m cosy and with my wonderful man in the warm with great
views, today I’m happy.
A quick trip
to Wilkinson’s in the town centre to get some things I’m putting together
for our six grandchildren, next weekend
we are going to Grimsby to see them all and so that I can have ‘Daddy Hugs’
We headed
back to BarberAnne’s and with my stroller I made it in to the salon to lots of
hugs whilst the mad professor had his hair cut, It’s lovely to see the girls.
Life is still good despite all the ills in my life.
We headed
home to the sofas we were both so washed out our eyeballs were soon looking at
the back of our eye lids. Life isn’t that bad you know…..
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