Homeward bound!

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…..