I'm back! So what's it like in hospital?

Hi all, it’s me again, I’ve wrestled the keyboard away from Mr Shute who has been keeping you updated whilst I was in hospital.

I thought I’d make my first blog back about what it’s like spending ten days in hospital and explain a little more on the roller coaster journey, seems nothing is simple and straight forwards in my life.

Sunday 15^th March, today is the day I’m being admitted, to be honest I’m  pooping myself, the news of the MRSA, that as a result I might not even be admitted today, with fluff growing I cannot afford the delay. I’ve packed a small suitcase, just with the bare essentials, having had several hospital stays I know there isn’t much point in taking in loads of clothes as space is limited, you can get moved around and the chance of stuff going missing during moves, well it isn’t high but it can happen, anyway I’ve got Andy who can bring me in whatever I need on a daily basis. The main essentials are my (now) ‘Bridget Jones’ style  knickers that can almost go under my chin ha! The joys of steroids, I so hope that after my operation and fluff has gone that I can put Mr Farah (anti-steroids) & Dr Haylock (Pro-Steroids) into two corners of my room and hit the bell and let the winner decide whether I should be on steroids or not, for sure it will take a while to come off them, your body can tolerate huge dose increases but you have to be weaned off it slowly. Also back to the bag pack, I need my own towel and plenty of sets of Jim Jams.

I spend the morning relaxing at home on my Chaise; our dining room has a bay window and the house sits several feet above street level so I have plenty to look at (no not Hilda Ogden style), we’ve got a bird feeding station and I love to see the different types of birds coming to feed, the one I hate is ‘Mr Magpie’, yes I’m superstitious so to see one Magpie on its own is considered a sign of sorrow (according to the rhyme), as a child I was taught if I saw a single magpie to say “Hello Mr Magpie, where’s Mrs Magpie?” (Weird that one magpie is a sign of sorrow but two are a sign of Joy). Plus they are so big they seem overly greedy and they scare off the smaller birds, I’ve a Robin that comes visit me, I love Robins with their bright red chests.

Andy called the hospital late morning and they confirmed I had a bed so we are definitely on.

As I relax I call Emma (my daughter) on ‘Face time’,  I love modern technology for letting me connect with my family who are the other side of the country from us, a few weeks ago when I was having my spell of seizures we were face timing and Emma had to go sort some food out so Chloe decided she would keep the face time going to keep an eye on me, cyber sitting, so sweet.  Emma and I talked about everything and nothing, mainly lol about how impossible it is for Abbie, Chloe and Olivia to actually all get on without one antagonising another and World War three breaking out but we also talk mummy/daughter stuff and about my operation. The conversation ended with poor Emma in tears, I know she wants to be with me and is scared of my surgery and knowing fluff ultimately cannot be beaten even if it keeps getting removed, I asked Abbie to give mummy hugs for me;  as the screen goes blank, yes inside I’m sad but I have to remain strong for Emma and everyone, I can’t let my guard down even though I want to.

Mid-afternoon we are at The Walton Neurological Centre and heading to Cairns Ward. I’m met by a lovely Staff Nurse called Kate who tells me I have my own room rather than a bed in the main ward. There are risks to anyone in hospital if you are known to have MRSA so precautions are taken and having a room to yourself is one of the precautions, the staff when they come in have to wear red aprons and they wear gloves too, these have to be removed before they exit my room too. Contact is kept to a minimum.

I unpacked my small case or rather I had Andy unpack my PJ’s, soap bag, towel etc. I’d remembered my ipad charger extension cable too, It was just as well I have my ipad for the TV in my room wasn’t working, thank goodness there is free wi-fi too. How on earth did we cope in ‘the good old days’?

Andy helps me out of my day clothes, my lovely Cath Kidston dress and he helps me in to my PJ’s, I tell him to take my day clothes home when he goes.

Over the next couple of hours I see a doctor who gives me a quick once over examination, we discuss my medical history. One of the nurses, Jim, takes blood for blood tests, have to say he was one of the best nurses I’ve ever had for finding a vein and extracting blood with the minimum of pain. I have to have blood tests done monthly and over the years the main veins have collapsed so it’s often difficult to find a healthy vein.

Later one of the anaesthetists pops in to see me and discusses putting me to sleep pre-surgery and how she’ll maintain my coma like state during the procedure.  I find it all fascinating stuff.

Not long after Mr Farah appears, Andy explained this conversation in one of his blogs but in case you missed it we collectively agreed that if tomorrow morning swab shows MRSA then my surgery will be off until Thursday. As he left the words ‘serious risk of infection to the surgical wound’ were shouting in my head. I’m lying here wondering how much more can I take, no one truly knows what it is like for me knowing I can’t be cured of fluff, that operations like this can only buy me more time, the pain and scary nature of the seizures, my quality of life has deteriorated over the last 19 months, I’m slower than I used to be, I feel unsteady on my feet, I have constant headaches, I try to be positive for everyone else but this is a living hell only improved by the love of and for my family and friends and of late the growing number of strangers who are showing concern for me having discovered the blog, yes you lot, it’s a combination of this support that sees me through each day. No one in their right mind wants to die but no one wants to be a burden or to be here if they’re too ill to cope. Sadly at times I feel in this latter category and the latest news of a high risk of infection on my brain truly has me saying to myself, am I doing the right thing now in having surgery for what will my quality of life be if this goes wrong? And would I be being selfish to give up and let nature take its course

I was looking down the bed towards my feet when Andy asked “Penny for them hunny”, I looked up, I didn’t realise the look on my face was telling all of my fears and thoughts. I was about to speak and Andy broke down in tears, I asked him why he was crying? In between his sobs he begged me not to give up, “Please don’t give in, please don’t”, we squeezed each other’s hands. I replied “But what if I get an infection in my brain, what will my quality of life be then?”.. Andy pointed out that there was a chance I wouldn’t get an infection and then to bring us back on track added “We’re getting ahead of ourselves right now, surely its whether you’re clear of MRSA tomorrow morning or Thursday, please let’s get to Wednesday and then look at your options” I never answered. This illness has a lot to answer for it not only hurts me but it hurts those closest to me too, I still ask “Why me, WHY ME”?

Monday morning came and disaster, the swab is positive for MRSA, my heart sinks even though deep down I knew this would be so. Mr Farah said “Thursday it is then, keep yourself occupied and cheerful being in isolation can be lonely” I’ve been fortunate to have such caring consultants since I came to live in Wirral, Messrs Farah, Haylock, George & Walsh are in my eyes amongst the finest medical staff I’ve dealt with and trust me when I say that list is long.

I called Andy and broke the news; we are both deflated by it. I explained Mr Farah had said he would see my MRSA swab results Wednesday but would ‘need to’ operate on Thursday. My mind is doing overtime again, so is Andy’s he picked up on ‘need to’ too.

Some days I’m overrun with visitors other days none, obviously the Monday of my cancelled op we suggested I'd be too out of it for visitors, Andy sneaked in with my favourite Costa Coffee Latte on his way to work, he had been granted the day off but now he needs Thursday off so he’s heading in to work. Talking food & Drink, how hospitals have changed. Both Walton & Clatterbridge have Costa Coffee franchises in their hospitals, gone are the days of ‘take it or leave it’, instead you have the option of top quality drinks and the food menus are pretty damn decent. A nice range plus you can order snacks 24/7 if you want them. You still get the good old tea & coffee trolley being wheeled around the ward but I’ll take my Costa Coffee Latte any day of the week. Even if the hospital franchise is closed Andy Found a Drive thru Costa on Aintree Retail Park and it’s not five minutes from the hospital, I’m in Costa Heaven!

Filling my days as I wait for the MRSA to sod off isn’t easy, I’m in a room that is about 10 feet long and about 6 feet wide, nice big windows but looks out on to a roof and it has my own En-suite loo. I cannot leave the room except for my daily shower which I have help with, I am unsteady on my feet and getting dressed is difficult.  Have to say the only down side to Cairns ward are the showers, there is much room for improvement here, shower heads/brackets that slip down etc.

So after my shower it’s me either napping in my chair as just a short walk and shower tires me out or I’ll make the odd call to family, Andy calls me often and I chat in Messenger on my iPad, using face-time is very hit and miss but hey, the wifi is free even  (it only comes on at 2mb) if it is a bit hit and miss.

It’s amazing how busy hospital wards are, I try not to disturb the staff and I’ve only pressed my call button twice when  I was having a seizure and if I need someone to help me walk to the loo, I try to plan it for if they are already in my room. Some patients feel it’s acceptable to use their buzzers like calling room service, my own view is unless it’s desperate don’t use the buzzers, the Nursing staff are busy and not your/our servants. I'll guarantee as poorly as you are or think you are that you are so desperate to press that buzzer there are others on the ward who are poorlier than you, all I'd say is if you are unfortunate enough to be in hospital for anything remember the staff are busy helping other patients, no ward is over staffed these days, try to be patient, they'll appreciate it and less interruptions in their routines means they'll have more free time to assist you. 

I get plenty of hospital visitors be it The Ward Nurses, or the physio team, the consultant’s team, the man himself, Mr Farah, the Occupational Health team, Alison, my specialist Nurse, the cleaners, care assistants, the catering staff and I had the hospital chaplain visit me. I’m not religious, we chatted about everything and nothing, he asked about me and our family, Andy too. I explained I wasn’t religious but he was fine with that, he asked could he say a prayer for me, I said that would be nice, he prayed for my family, Andy & me. It wasn’t long and not long after he wished me well and left, as he walked away I cried, emotionally I am a wreck, If there is a God I’d love to know what I did to offend him to put me through so much illness wise, if it’s his way of testing me well he has certainly done that, this visit just makes me realise how close I am to now 'meeting my maker'.

I’ve been fortunate to have a stream of visitors, Andy bless him sees me daily mainly with a Costa Latte in hand unless I message him not to bring me one, not that I’ve tired of them (never hahaha) but because either Letty or ‘Scouse’ have 'stealth ninja’d' on to the ward with one for me. Sharon & Norma from the Isle of Man popped in, Xena & Nina put in a couple of appearances and Karen from Clatterbridge Cancer Charity was over at their adjacent site so she popped in brought me a craft magazine, Karen is lovely, we have similar retro fashion & crafting tastes; my illness all be I wish I didn’t have it has brought me close to so many special people a lot I consider friends now.

Tuesday I had a seizure, I scared the staff, having not seen me have one before in some aspects it is as scary for the staff as me. There were too many of them around me and this was making me worse not better, as I say, how are they to know and I’m too tied up trying to cope with this to explain politely? When I started singing twinkle twinkle little star one of them thought I’d flipped with having the seizure..

Wednesday was a bit of a momentous day, my swabs come back clear, MRSA has gone, Mr Farah stuck his head around the door, “We’re green for go for tomorrow”!  I call Andy, we are both relieved.

I still can’t leave my room; still I’m used to the comfort and security it gives me. It’s reassuring as the Ward Sister’s office is opposite my room so there are always staff members around. I get lots of visitors, more blood tests, the anaesthetist, Mr Farah. I hear I am second on in the morning.

It's Thursday, Surgery day, Andy did his usual sneak on the ward and spent time with me, Kate kindly turned a blind eye to him as she did her checks and tests, I am to have a powerful antibiotic via a drip, the team are determined if MRSA is still around its not going to hurt me!

Soon I am being wheeled to theatre on my theatre trolley, I am nervous but again I’m not showing it. At the lifts Andy kissed and hugged me, I’ve read his blog about how he cried bless him. I’m too wrapped up to realise how this might turn out or how it affects him, he hid it well from me.

Downstairs I am in a waiting area with five others waiting for different operations, the nurses do their checks down here too. Soon I am taken through to the area where I am to be anaesthetised, we chat as more cannulas are put into me, they put even more in once I am out cold, there is one to measure my pulse there is another in my ankle.  Back in recovery one of the nurses looked after me after my first tumour op, she remembers me, how sweet, 19 months ago that was!

The recovery team are great and I’m probably with them around an hour before they let Kate take me back to my room. I ask her will she call Andy, I want to see him.. I didn’t know he was on his way lol should have known better.  I’m not as bright as I was after my first op but I’m awake. I’m conscious of my left sided weakness, I cannot feel my left foot and my left hand doesn’t feel the same either. In my head I think “well I was warned we could have some damage, but I’m still alive and hopefully fluff has gone again for now.

Andy arrived, thank goodness he never brought coffee, I was on drips and wasn’t thirsty or up to drinking. I dozed on and off holding Andy’s hand.
Truly the care is excellent on Cairns Ward. The staff are so attentive, and so kind. I’d gone down to theatre around 11.00 I think it was, and was back on the ward around 5.30, Andy stayed with me until around 10pm, I’d have loved him to curl up on the bed next to me, I need a proper hug but its not to be so he headed home, he is exhausted and even though he had today off work and he’s in the office tomorrow.

Post op you have to be checked by the staff hourly just to check you have no complications, it’s looking good but being disturbed through the night is tiring. Being ill is exhausting you know ha!

Friday comes and I’m not allowed out of bed still, my legs are encased in ‘stockings that inflate and deflate to push the blood around my limbs. The doctors come around inc Mr Farah, he explained my leg weakness and said it’s likely to be permanent but its early days it may come back, he’d set the physios on to me. I thank him for ensuring I came out of theatre relatively unscathed. 

Later I saw the anaesthetist, Andy was here when she came, he thanked her for looking after me in theatre, I thought how sweet, she asked was he pleased then the cheeky sod said yes BUT.. he was disappointed my vocal chords are still working!! Revenge is sweet my dear…lol! One's wife could get used to a servant. Now where’s that bell ? hehehe.

The weekend was quiet, Andy sneaked in Saturday morning around 9.30 and he stayed until around 2pm, I sent him home eventually, he needs to rest and he has a list of chores to do for Mrs Bouquet lol, there is no hiding place, just because I'm in hospital Shute Manor needs to be spotless hehe.

Maria with her running buddy Karen Johnson

Sunday I was eagerly awaiting updates of how my lovely Cousin Maria Hinnigan had got on running in the Reading Half Marathon, she was running to raise sponsorship for Clatterbridge Cancer Charity, in the week Andy told me Maria had injured her knee on a training run, I'm worried about her. We had planned to surprise Maria and be in Reading at the finish but sadly my surgery schedule meant that went out of the water! I was thrilled to hear Maria had made the finishing line, as soon as we get pictures we will share them with you. Amazingly Maria has reached her sponsorship target of £800 we are so proud of her. I'd add we are equally proud of a dear friend John Burns who is running the London Marathon in a few weeks, again for Clatterbridge Cancer Charity, John too has exceeded his sponsorship target of £500 we are truly humbled by their thoughtfulness. Both can still be sponsored via their just giving links and you can sponsor Clatterbridge Cancer Charity by clicking on the logo in the border of this blog.

As I improve I want to go home as you’d expect, I like the hospital team but there is no place like home, there was still lots to do despite Mr Farah saying he’s send me home Monday afternoon or Tuesday. Andy was having a ‘royal head fit’ he’s right (I hate saying that! Grrrrr) though, nothing has been planned in terms of the aids I am now going to need at home, Andy digs his heels in and partly relieved but partly frustrated as the day’s events unfolded I had to accept I wasn’t going home until Wednesday evening. In hindsight as I am writing this from home, Andy was right, I would not have been able to manage without all the equipment I now have and most definitely but sadly need, there is nothing more saddening than the realisation I cannot cope physically in a lot of ways any more, I cannot help but think this is another step closer to the inevitable but I also realise I am fortunate to still be here with Andy and to enjoy time with my family & friends, I suspect a lot wouldn’t think like this but I’m grateful to be alive and have such caring people around me, I am blessed, there are a lot of people worse off than me today.

I’m going to close off now but with the usual thank you’s. I’ve mentioned a lot of people above, you all know how grateful I am for your friendship and kindness. I want to thank so many people I don’t know, I am not on twitter, there is only one 'twit' in our house and that’s Andy but he has told me about the amazing kindness that literally several hundreds of you have shown both of us and your concern. I probably will never get to meet many of you but I’d like you to know that during the toughest of times your support has been invaluable & helped get me through this difficult period, my heartfelt thanks people of twitter land & Facebook. xxx