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

 

Post Op Update

This will be a shortish update blog,  whilst many of you follow us on Twitter & FB, I want to make sure everyone who has shown us care and consideration isn't left wondering what has occurred.

Yesterday morning, (Thurs 19th march) I sneaked on the ward around 8.30 to see Julie, she was remarkably calm, Kate, one of the Snr Nurses was looking after Julie was doing her observations & charts also double checking everything for theatre, she was about to give her a powerful one dose antibiotic called Vancocin via an Intravenous drip, it has to be delivered slowly as it can cause pain in the veins, it would be delivered over three hours, a man with a trolley appeared "Julie? You're next up"

All prepped  Julie went down to theatre at 11.20. I walked with her, Kate and the porter as he pushed her bed, as we waited for the Operating Theatre lift to arrive I kissed my wife and hugged her, whilst I'm positive the surgery will go well you just never know and as I walked away the reality of what could be hit me and a grown man of 58 openly wept going down a very long corridor, it's going to be a long day.

With the benefit of the first operation I knew it would be unlikely that Julie would be back on the ward before 5 and I had been 'Royally Rollicked' by Mrs Shute for I'd arrived without getting breakfast for myself and I'd forgotten to do my own Asthma drugs, so I was under strict instructions to get my backside home. So boosting Mersey Travel's funds with another trip through the Mersey Tunnel I headed home and took my meds.

I filled my day sorting out the dustbins, a letter arrived that contained documents I had to sign on Oath so I called our Solicitors and arranged to do it with them, back home, write a letter to accompany the signed legal docs as it was going straight back in the post, a trip to the Post Office and back home for a brew.

I was slightly concerned the Stair lift company hadn't put in an appearance as by now its gone One p.m. and they have two stair lifts to install so a call to them, yes they are on schedule. thirty mins later and their guy is here and he gets stuck straight in to the job. Always best to leave professionals to it I find.

3.30 came and I knew I was pushing my luck but I called the ward, there was no news on Julie, so that's four hours gone by. Around 4.45 the engineer had fitted the two stair lifts and I followed him out of the door. I hit speed dial on my car kit and called the ward, I spoke with the Staff Nurse and Julie was in recovery, Kate had gone down to collect her, I was on my way.

Ten past and I'm within a couple of miles of the hospital and my phone rings, it's Kate to tell me Julie is back on the ward, she's fine and she's asking for me. within ten mins I'm on the ward and hugging and kissing my amazing wife. The feeling of relief is incredible. She's still connected up to drips, pumps, monitors but she says she feels good, there is no obvious sign this woman has gone through brain surgery. She told me she felt weakness in her leg and her arm to a lesser degree but it may be down to post op swelling, we shall see and well bluntly, we can both 'live with' this as an outcome. I stayed with her until around 10pm, the staff are all so kind, even got offered a cuppa. I was going to decline but Julie was looking forwards to a Huge hot chocolate and seemed disappointed when it was a small mug, the solution was "I'd love a hot chocolate too please!" so two small mugs equals one big mug! Result! Julie ate some toast too. I met the Anaesthetist who had listened intently to Julie's previous experiences and decided an anaesthetic cocktail called TIVA was going to be the best option for Julie, it certainly worked, I thanked her for looking after my lovely wife, she asked was I pleased? I answered "Yes but just slightly disappointed her vocal chords are still working!" Ha! I am sooo going to pay for that hahaha.

A night of sleep, I actually slept until my alarm clock went off, must have been with relief. Up, shower, next stop Sainsbury's, I had to take Julie's phone in, I brought it home whilst she was in surgery so I thought I'd get the staff some cakes, they must get bored of chocolates so I try to be different, it seems to help. At the time of her first op I arrived bearing four dozen Krispy Kreme Donuts, the Staff Nurse as I handed them to declared "They're all mine, right??" lol she was tiny but she was going to defend these donuts to the hilt. A Doctor was severely rebuked for even suggesting he 'might have one' hahaha. On a roasting hot day on another ward I delivered so many orange fruity iced lollies we had a constant stream of staff at Julie's bed thanking us. Today it was around 40 cream cakes, slices, donuts, choux buns. OK its blatant bribery lol but its gratefully received and it has the staff look favourably on me when I plead for oddball visiting hours. I'd say to any of you, be polite to staff, thank them as they come and go and if you can afford a little treat for them even if its just biscuits, it is appreciated.

More importantly Julie was looking well, she said she'd had a restless night mainly down to headache pain and the tightness of the skin on her scalp where they had stitched her up (free face lift hunny lol). After her first op the wound was left uncovered this time it has something similar to masking tape stuck over it, I sense this will need soaking off or it's 'gonna hurt'..  We discussed her left leg, it is weaker for sure but its early days, she's tired and so after fetching her that oh so crucial Costa Coffee latte I kiss my wife goodbye, there are no tears today....

It's a Roller Coaster Ride...

A quick update for you; it’s been a roller coaster like journey for Julie this week but we have some good news as in it’s just been confirmed that the MRSA swab results have come back negative so it’s all good for go for surgery tomorrow!

As you know from the last blog Julie’s surgery was ‘pulled’ last minute, she was all

prepped and gowned up, (just like this) I’ve included a picture but this was from her first op in 2013, I thought I’d better add that for you might have wondered where that long blonde hair had suddenly appeared from and wondered what amazing diet she was using (Those darn steroids!)!

The sexy leg accessories, these actually inflate and deflate during surgery they assist in ensuring the blood flow continues uninterrupted and reduces the risk of thrombosis, my dear wife I hope you agree has had more than enough to contend with without even more complications thrown in bless her.

So Monday morning the op was pulled, although understandable on the risk grounds for Julie and to a lesser degree me, family and you kind people too it was a huge disappointment and cause for concern for fluff is aggressive and it grows by the day, Julie obviously needs it gone. Everyone although concerned had recognised visiting on the day of the surgery was going to be out of the question but this left ‘Madam’ stuck in her open doored ‘cell’ no visitors planned, watching everyone walk by and other than being escorted to the close by shower cubicle cannot leave her room. Worse still her TV won’t work. One of the nurses checked it out too. Apparently they are upgrading the TV’s and they’ve had problems with the aerial, anyway, an engineer was booked. Thankfully the hospital has free Wi-Fi so the iPad has taken a battering for even with the door open whilst it’s ‘nice’ to have your own private room for most for Mrs Jibber-Jabber as I often call her she is out of her comfort zone. I sneaked in to see her mid-morning for my company had kindly given me the day off but now I had to ask for Thursday off so, doing the right thing I went in to work. I grabbed her a Costa Coffee Latte on the way in, this is one of the way’s in to this woman’s heart lol. It was a brief visit but in the words of Arnie “I’ll be back” (later).

Monday night & Julie tells me that around 7pm one of the anaesthetists popped back in to see her saying they’d just finished the day’s theatre list. Shortly after ‘The main Man’ Mr Farah popped his head around the door, “Thumbs up for Thursday, I’ll check your swabs Wednesday but I’m going to have to do the surgery Thursday MRSA or no MRSA” This had my ears prick up when Julie told me, the natural thing for me to think is ‘fluff’ is growing and dangerously so but equally it could be that he’s on holiday the week after or that the mapping scan would be beyond use at this point. Who knows but it adds concern to me.

Monday afternoon Julie felt a seizure coming on, she’s had that many now she recognises the signs so she hit the emergency buzzer. Within seconds three nurses were with her and the seizure kicked in big time, not as long as the St Valentine’s day one but as powerful, the arm went into ‘flipping mode’ by one of the Nurses own admission to me later they struggle to cope with seizures, they’re not that common on their ward. One of the nurses tried to stop the flipping arm by holding it but that in itself causes more problems and distress for Julie. Another cause of distress is when more than one person is talking and from different directions (this is at all times not just during seizures), so she had to ask them to stop the talking and explained she needed the person on her right to focus on her eye to eye and the Nurse on her left to stop arm wrestling with the flipping arm. Julie started her singing routine, twinkle, twinkle little star only for the same nurse to her right and nearest the door to think she was off with the fairies lol. So concerned she left the room and spoke to a colleague outside. Julie assured them she hadn’t lost the plot and it was something we did. In the end they all joined in apparently, sounds hilarious writing about four adults singing twinkle twinkle little star, how I wonder what you are.

The seizures are traumatic and this is another one of those moments when its sounds odd (to me) to say I was ‘pleased’ she’d had one in front of  trained medical staff, up until now it has just been me that has witnessed these events.

By the time I got in with another latte (out of a vending machine) calm and ‘normal service' had resumed.

Tuesday and Letty/Olive now appears to have become a stealth warrior for she sneaked on to the ward at 09.00 undetected even though the Ward Sister’s office is opposite Julie’s room. A TV engineer arrived and she decided Julie’s TV does work but the overhead bracket has to be in one specific position and the TV in turn must be at a specific angle, still its TV, it works and it helps with the boredom not that there is much of that today. For afternoon visiting she had Friends Nina & Xena tag teaming and then later a dear friend from the Isle of Man was over accompanying a neighbour who was over for tumour treatment so Sharon popped in too. Liverpool’s hospital’s in particular Clatterbridge sites also support patients from the IOM, they also support Welsh patients too. Whilst NHS provision states patients should be able to get Cancer treatment at a specialist centre within a 45 minute (car) journey, in some instances it’s just impossible. Back to Julie, she had a visit from one of the anaesthetists, he  called in and explained precisely what they do pre and during surgery, she found it really interesting.

We’d agreed I’d give Tuesday visiting a miss, frankly I’m feeling exhausted and run down, I need to recharge my batteries and ‘there’s housework to be done lol’.. Also,  on top of the four visitors already mentioned a dear friend we loving call ‘Scouse’ aka June was in for evening visiting. I had every intention of going straight home but I drive within a mile of the hospital and well, I miss my soul mate. I popped in and surprised her with a couple of magazines and some crisps frustratingly within 10 minutes I gave her a wave goodbye and trudged off home to do my chores! Our bed is a lonely place without my lovely wife in it, I never sleep well, I leave the TV on, well truth be told I drift off to sleep whilst it’s still on. After tidying up I head straight to the bedroom, I’m a creature of habit and if I sat down in the lounge to watch TV I’d end up probably sleeping the night on the sofa, it’s easier to go to bed earlier. The down side of this is come midnight I’m wide awake! I do drop off but by 04.00 I am bang awake! This is a nightmare, I’ve gone to bed early to recharge my batteries and I sleep less and end up even more tired during the day.. I'm in need of a full week's holiday.

I call Julie regularly each day, late morning today (Wednesday) she tells me some of Mr Farah’s team had been around but not the man himself, “they told me if the MRSA is still present they’re cancelling the procedure again”  What?! I recalled Mr Farah’s comment that he ‘had to do the surgery Thursday’. Here we go again, back on the roller coaster, more uncertainty! Is it on, is it off? How big is fluff? Julie must be thinking how long do I remain a 'prisoner?' This is crackers, I am frustrated for were I there ‘we’ would be having words.. I try to assure Julie but it’s frustrating for me and fluff is in her head, I am already writing my notes ready to request answers later.

Well it’s just after one thirty and Julie messages me to confirm the best piece of news in a few days, swabs are all clear, surgery is happening tomorrow, it seems our roller coaster car is coming in to the station at last…

Soon as I know more tomorrow  I'll update via twitter & Facebook initially and I'll probably do the next blog at the weekend when hopefully there is good news to share.

I'm going to have a half hearted #GoodLuckJulieShute fest on twitter in the morning, feel free to join in too. Monday's fest had an incredible effect resulting in 1,101 blog reads in 24 hours, a new daily record and by tomorrow we will be through the astonishing figure of 20,000 WORLDWIDE reads! It did wonders for Trip Advisor too haha, over 800 views of our reviews in Grasmere. I'm thrilled the word is spreading and I hope the content is helpful whether you are on a similar journey or if this gives you your first glimpse into the world of cancer..

From the bottom of our hearts, thank you all for hanging in there with us, some of you who have only recently discovered the blog are being incredibly kind with your comments, we are glad they are helping (tears or no tears), we're flattered by all of the kindness you show us. Love A & J xxxx

Breaking News - Well it was at 08.00

Andy here, Julie is in Walton Neurological Centre for her surgery, she was admitted yesterday but I need to back track to Friday to ‘fill you in’.

Friday afternoon Julie called me at the office to inform me that one of Mr Farah’s specialist Nurses had called and informed her that one of her pre-op assessment swabs (the nasal one) had come back positive for MRSA! We were gobsmacked for knowing surgery was imminent a couple of weeks ago I had Julie go and see our GP and get swabbed, the result came back negative. I also took the precaution of buying ‘Hibiscrub’ which is a 'MRSA destroying' body shower, shampoo & hand wash, we had both been using this for well over a week, our hygiene regimes at home are strict. No one told us to do any of this, it was just me being ultra-cautious (remember earlier blog “Fail to plan, plan to fail”). Seems even my best intentions were not sufficient. The Nurse had contacted our GP and arranged a prescription for an antibacterial nasal cream to take this second beast on and I arranged for our pharmacy to deliver it, everyone jumped through hoops, an hour after the initial call and Julie was applying the ‘bactroban’ up her nose using her thumb! Lol - I jest!  she’ll kill me later (love you hunny) she used cotton buds as recommended.

Some info on MRSA for those interested: http://www.nhs.uk/conditions/MRSA/Pages/Introduction.aspx

The instruction was still to call the Bed Manager Sunday morning to get confirmation that her bed was sorted out and to come in unless we received a call to the contrary.

Saturday we had an amazing chill out lunch catching up with friends Susan & Gareth, misfortune had kept us from seeing each other for around a year so it was good to catch up but I suspect also a bit of a shock to see how much Julie has deteriorated in that time. After lunch we were going to walk the shops in the little town but we managed one before Julie told me she was feeling off form. We were home within 40 minutes and about an hour after getting home, yet another seizure kicked in. We have a routine to try and distract her brain from the seizure and we sing, well Julie sings, I wail along. Advised by one of her ‘secret agent friends’ who works with young adults with Epilepsy & similar we sing either slow nursery rhymes (Baa-Baa black sheep or twinkle twinkle little star) or we sing the twelve days of Christmas! Weird, but it works for us. As a carer all you can and should do is remain calm and comforting, keep in my case Julie calm and watch for any untoward symptoms not shown before. Julie's left arm in the severe seizures flips as she calls it, it shakes away from her side uncontrollably then the arm begins to curl up towards the shoulder almost like lifting a gym weight, the scary thing for me is the wrist then begins to pull the hand down in the direction of the elbow, it looks like it isn't going to stop and it goes beyond the natural bend/flick of our wrists. I can understand why Julie gets in to such excruciating pain.

Sunday came and it was just a chill out day, being Mother’s Day I served Julie
breakfast in bed,  her looking lovely in bed opening cards with her tray on her lap, here's me starkers except for a pinafore apron delivering her breakfast! If of a nervous disposition Avert your eyes NOW---->

 

Around 11.30 I called the bed Manager who confirmed Julie’s bed was booked (turned out Bedroom) for she was to be in an isolation ward due to the MRSA.

We headed for the hospital around 3pm and checked her in around 3.45. All of her theatre clothing and scrub was laid out for the morning. The Nurses were brilliant as always, a Doctor came to see Julie, took a list of all her meds, ‘borrowed’ the box of meds so she could get prescriptions written up for them’. She was visited by the hospital pharmacist too, both were slightly surprised by the variety of drugs Julie was on!

One of the Nurses arrived to take some blood from Julie, he’d just finished and a knock at the door was followed by Mr Farah’s head appearing around the door, swiftly followed by the rest of his body! Makes you wonder when our Doctors get any real time off, its Sunday night and he’s visiting his surgical patients. We didn’t shake hands for obvious reasons, he leant against the wall and the conversation went like this:

MF: You know you’ve got MRSA in your nostrils? It’s a problem, I’m very concerned at the risk of wound infection, I’d prefer not to operate on this basis. We have done a swab tonight and we’ll look at the results in the morning, I’ll have you prepped for surgery BUT if the swab result shows the MRSA I’m going to strongly suggest cancelling. Instead we will keep you in here and continue to treat it, do further swabs and look at the results and decide from there, I’ve got theatre time booked on Thursday I can do it then. What do you think?

Julie: I don’t know, (looking at me) what do you think?

Me: I looked at Mr Farah, I asked, how big is the tumour?

MF: He hesitated but responded with “It’s not the size of the tumour that’s the concern it is the risk of wound infection”..

Me: I can see no option but to delay,

MF: Ok if the scan is clear we’ll do the morning, if it’s not we’ll do it Thursday. See you in the morning.

As he left Julie was staring at the sheets, I left it around a minute before asked “Penny for them hunny”, she looked at me, I’ve known this amazing woman around 13 years, I think I know her well, the look on her face was one didn’t want to see, I began to cry, “Why are you crying” she asked? I responded “Please don’t give in to this yet, please don’t” I was begging her. As I dried my tears we started to talk, Julie’s concern was her quality of life if the MRSA infection hits her removed tumour site. I understood her concern but said well if you decline the op you know what your quality of life is going to be, at least with the op there is a chance you will not get an infection.

At times like this it’s so hard to be objective but for Julie’s sake I needed to be, this wasn’t a time for me to be selfish. I explained no one but she knew how much of a toll the seizures were having on her and how she was coping or struggling with her decreasing mobility plus yet another operation in the pipeline. But I felt for now we were both probably getting ahead of ourselves we have to believe the MRSA will clear up and so the decision is op in the morning or Thursday, lets cross the bridge on Wednesday if the infection was still here. I appreciate for many of you this is upsetting reading and I apologise but if you are on our journey we’re telling it ‘warts n all’..

As usual I far outstayed visiting, I helped Julie into her PJ’s and we hugged goodnight, no kissing ‘just in case’. For her first surgery I sneaked on the ward at 8.a.m. to see her off to theatre, sadly we never know if this is our last goodbye. Tomorrow is different; we don’t even know the surgery would happen, our gut feeling is it would not. I headed home, I have to admit to being drained, frightened, I called my Mum, she’s my confidante, my best friend and yes I can cry over the phone to her, it’s hard to describe the events to anyone without my eyes filling up. It’s only of late that the hard realisation has truly hit me of precisely where we are, up until recently even with the beast our lives were very much ‘normal’ Julie did the washing, yes the ironing went out, Julie does the cooking but of late Julie isn’t confident doing stairs on her own both from a safety point of view and from physical point of view, our laundry room is on the top floor, that’s an extra two staircases so whilst a couple of months ago I’d say “I can’t remember the last time I went to the top floor” these days it’s a daily occurrence to fill and empty the washing machine & tumble dryer. Julie struggles with somethings that we all accept as natural, undoing zips, putting on tights, putting on & lacing up shoes. Showering, from a safety point of view I’m always in the shower room in case her leg gives up.  I now consider myself a carer not just husband, partner and best friend. It’s no burden though Julie does feel one; I’d do what I do daily and more as it’s required as many times as its needed forever if I could, as I remind Julie, our wedding vows said “In sickness and in health”.  

Anyway I was in bed by 9pm and was woken by my ipad falling out of my hand on to the bed as I dozed…

This morning, Monday 16^th March, 2015. Around 07.00 Julie called she was prepped for surgery, around 08.00 she was calling to say “It’s been cancelled”, again we weren’t surprised. Julie explained the conversation as it had happened. MR Farah had confirmed the MRSA was still present, he was cancelling the op would have more swabs taken and he’d review them on Wednesday. Julie isn’t certain but the way she explained this next piece made my ears prick up… he apparently said “I’ll check the swab results on Wednesday and we can discuss and make a decision then but MRSA or not I need to operate on Thursday.” Perhaps I jump the gun and to the wrong conclusions but this throws me back to last night’s conversation when I asked how large was the tumour now and it was ‘body swerved’, I may be way off the mark, I’ll find out by hook or by crook but with Julie struggling health wise my gut is telling me the tumour is accelerating like an F1 car on the grid.

I saw Julie at lunchtime, she seems much laid back at the slight delay, I think I’m back in good books I arrived bearing a Costa Coffee ‘Latte’.

So, it’s another waiting game poor Julie whilst most of us would love to have a nice rest in an adjustable bed with servants running after us we would jump at it but Mrs Shute will be climbing the walls by Wednesday..
 

This is Au Revoir, Not Goodbye.. We are in real time.

Phew, it’s taken a while but by the end of this blog you’ll be living our lives real time with us…

Its Friday afternoon on the 27^th Feb 2015, Andy has dropped me home and I’m still trying to take everything in about my limited options after the forthcoming surgery, I’m still in the dark as to when that will take place, my Brain Mapping MRI scan isn’t until the 18^th of March so almost three weeks away and my surgery cannot take place until after that. Mr Farah we know operates on a Monday so we anticipate my op will be on 23^rd March, this in itself is a worry for Fluff we know grows by the day, it will be at around 7-8 weeks since it appeared on the scan, gulp…

Andy has set off for work, his life still has to go on, I’ll hand you over to my Frog Prince for this bit (yes, I’ve almost… almost forgiven him, almost…)

Phew I can finally get a word in at last hahaha, ever heard the expression “I’m the boss in our house… My wife said I can be”? Julie stopped talking the other day for about five minutes, I thought I’d gone deaf!  lol

So, I’m driving in to work it’s an hour’s drive and I’ve got my hands free kit in the car so I use the time constructively. I called Alison, Mr Farah’s specialist Nurse, she’d left me a message. When Julie was informed about her forthcoming scan she was asked if she wore glasses, when she said yes, the feedback to me was “Oh there is a part of the scan where you need to read so we’ll have to leave that bit”. On hearing that my senses pricked up and given this scan is to assist Mr Farah during the operation it sounded bizarre that part of the scan could be omitted, if Julie needed to read to complete the scan and she doesn’t have reading strength contact lenses and you cannot wear glasses with metal in them (even if it’s only screws) then I had a solution! For our honeymoon as Julie loved to swim but hated getting her face wet and she is as blind as a bat without glasses to see the beautiful fish on the reef off our hotel I found and purchased her prescription lensed goggles, they were not expensive and for this purpose I knew they were all plastic and rubber, no metal! Anyway I’d queried the scan earlier in the week and Alison was getting back to me on it.

I called Alison she explained that the radiographers had said they were comfortable to give Julie her instructions whilst in the scanner over the built in speakers so no reason to panic all the tests would be done. (It’s always best to ask and not assume)

I next asked Alison if she had heard of the operation date, rather than answer the question she just said “well it cannot happen until after the scan”.. (Yep, got that) and empathised the importance and the accuracy of the scan, I agreed and told her that’s why I’d queried the reading glasses thing; this has to be right first time. It still didn’t answer my question so I asked again and the conversation was as vague and Alison added “Well maybe Mr Farah has arranged something and the date hasn’t come through yet”.  I explained I don’t like or deal in maybe’s if she knows fine, if she doesn’t equally fine but I’d appreciate finding out the date soon for I have to plan time off work, we’ll need to arrange for ‘Julie sitters’ lol after the op. Anyway at this point I ended the call, I called my mum, called Julie and the next thing is I’m in my office.

Around 4pm I received a call from Mr Farah’s secretary; “Andy, we’d like you to bring Julie in on Sunday 15^th for her op to take place on Monday 16^th (of March). I pointed out Julie’s mapping scan was scheduled for the 18^th.. “We’ll get the scan brought forward then Andy, the surgery will be on the 16^th.” I thanked her and called Julie to deliver the ‘good news’ ( I truly struggle with terms like good news and ‘lucky’ at times like this and in context to Julie’s condition, It’s weird and I suppose it’s ‘relative’..)

Its great news the team are working so well but lol it’s a spanner in the works too, believing the op would be the 23^rd I had planned for us to go over and see Julie’s family the weekend of the 14/15^th. Julie’s parents cannot drive to us, the kids had been over the week before, in my head Julie needed to see her family before her surgery ‘just in case’….

So, a quick check of hotels for tomorrow night (28^th Feb) in Grimsby, hotel booked, a call to Julie who went in to slight panic mode but I explained my logic, the weekend of the 7^th we were surprised with Vince & Denise booking us all into a hotel in the lakes, the week after was her surgery so it had to happen ‘tomorrow’…

It’s always good to see our family sadly we were restricted on visiting some dear friends in Grimsby too but by a weird coincidence Jooie & Andy were in Grimsby too so we managed a catch up over breakfast Sunday morning.

Julie’s Mapping MRI  scan had been rescheduled for  Wednesday 4^th.  Thank goodness for Olive and Xena who could take Julie, I’m in turmoil, guilt ridden that I cannot make these events and to be there for Julie but as we have amazing friends and in this instance they turned it into a bit of fun too it was great the three ‘nutters’ had their day together. I am truly grateful for the support friends and family are giving us either collectively or either of us on our own. This can be a ‘dark lonely place’ at times and friends and family can make a huge difference – As part of the advice we try to share I’d say don’t try & do everything yourselves ask for help or if its offered accept it. It can sometimes be perceived that you are keeping say Julie from her friends by doing everything but as someone recently said and created ‘Team Julie’ a team effort is better in the long run than trying to cope on your own…

I’ll enlighten you on what a mapping scan is then I’ll let Julie tell you her experience being in the scanner.

OK a mapping scan is to help the surgeon during the procedure. Whilst we cannot see it as we move our arms legs, twiddle our noses, stick out our tongues, wiggle our toes or touch our fingers our brain tissue moves and by capturing the movements helps the Neurosurgeon reduce the risk of damage to brain tissue as opposed to removing just the tumour.  We know there is a slight risk of paralysis this vital scan helps minimise that risk… Right back to ‘Mrs Bouquet’ lol.

Real Olive

Olive

The cheek of the man! Lol.... I met Xena in Liverpool we jumped a cab to Olive’s (Collette; I call her Olive for going to the gym together a few years ago she arrived  wrapped up against the cold winter weather wearing a “benny hat” and glasses, well for those of you that remember ‘On the Buses’… Tell me this isn’t Olive hehehe…

Ok, the MRI scan; Well who remembers Polo mints? (Can you still buy them?)  The MRI scanner reminds me of a GIANT roll of Polo's and me being slid inside it,  doesn't smell fresh & minty though lol. So I lie on a 'flat bed' outside of the scanner and gradually this thing swallows me up. I'm not keen on confined spaces and this is confined, I usually keep my eyes tightly shut throughout the entire scan listening to music through the head phones provided, my one hand tightly clasps the emergency 'get me out of here quickly I'm a scaredy-cat button'. Even with my eyes closed I had to hit the button  once a few years ago, I was overheating thanks to a menopausal flush and I felt I couldn't get any air!
As Andy mentioned with this being a mapping scan I needed to have my EYES OPEN! Oh my god!! I never realised my face would be so close to the roof of the scanner, I need to be brave! As I know the importance of the scan  I'm going to be brave and I grit my teeth. Above me was a mirror and the reflection in that was a red light or a green light, I was asked to wiggle my toes on one colour's appearance whilst waiting for the next light to appear then stop. One of the Radiographers asks me if I am ok and then tells me how long each scan takes throughout the whole procedure, they're very calming and reassuring. The next thing is one of the Healthcare staff re-enter the room and inject some dye into my vein for another detailed scan, this was the final one! Yayyy! It was just over an hour in the scanner, the sense of relief was amazing. It's amazing the daft things that flow through my brain at times like this such as; What if there's a power cut and I'm stuck inside the POLO MINT, how would I get out of here? (I know Hospitals have back up generators etc - I laugh, C'mon Julie get a grip, be a grown up!
  

So Family visited, Scan done and now it’s fun time with Vince & Denise, we’ve had some amazing breaks with them, we even did a USA ‘road trip taking in San Francisco, a drive down to LA then a drive across to Vegas, we had a fantastic time our humour is similar and silly hehe.. we get on so well. Andy often says he has a lot of friends but just a handful of ‘true friends’, ask yourself this; If the chips were truly down how many friends could you call who would drop everything to be with you? I’d be amazed if you get beyond your fingers on one hand. Well Vince & Denise are on our one hand, they’re modestly unassuming, we are both proud that they’re in our corner in this ‘battle with fluff’..

Its Friday, Andy has taken the day off work unpaid and we make the two hour drive to the lake district stopping at ‘Next’ to buy jeans to fit my ever expanding ‘fat ass’ into, grrrr… I haven’t mentioned my seizures, they are still happening I just haven’t mentioned them, but I started to have a small seizure in Next, the staff were incredibly helpful and helped Andy get me to the Shoe area where there is seating. Bless them they wanted to help but at times like this I don’t need the fuss I need tranquillity, this store’s music was ‘banging out too’ I’m sure loudness contributes but hey, I have to modify my life to recognise this I cannot expect retailers to think “Here comes Julie, turn off the music” lol.. Eventually I felt well enough and the staff guided us to the ‘disabled’ changing room, fact is these days I need help getting zips undone, boots removed, bras undone etc so such changing room facilities are a godsend. I got my jeans and well I ‘had to’ buy a couple of new cardigans too hehe..

We got on the motorway, I’d had Andy recline my seat slightly and I napped, even the smallest seizure wipes me out.

We met up with Denise & Vince in Bowness, grabbed a coffee in Costa, they’re lovely the hugs are special, we were already giggling. We grabbed lunch and mid-afternoon we headed to our Hotel, the Red Lion in Grasmere, a lovely hotel limited in parking though but, we fell lucky and got parking slots. We checked in and chilled out by an open log style gas fire, I was cosy! Our room was lovely and spacious a big deep bath/shower , I said to Andy I’m going to struggle getting in there. He assured me I’d be fine and he’d be with me.

That evening we met in the bar before walking 200 yards to the Grasmere Hotel where we were dining.. OMG, this place is food heaven, the atmosphere is great, the team are outstanding and friendly, the owner caring enough to visit your table and collectively our view was this was one of the best meals we’ve ever eaten and trust me the amount of world travelling the four of us have done this is a well-earned accolade, Andy has reviewed this on trip advisor, ( www.tripadvisor.co.uk ) our hotel too that he has aptly named his review (Vince's suggestion) ‘Breakfast Bingo’ lol, check it out, he’s funny, it was funny.

Woon &  me at Chester's  2013

Saturday morning we went for a walk around Grasmere and headed in to the garden Centre where I felt unwell, I had to sit down cheekily on their furniture, my leg was shaking in seizure but it was mild and well it soon passed, we headed back to the hotel before we went for a short drive for Coffee & CAKE!! At Chester’s on the river, Scrummy, busy but worth the wait and the setting is amazing.

We headed back to the hotel after a bit of a ride around and we chilled out in the lounge, next stop was the bed for a nap and then dinner at a nearby Bistro, the meal was excellent but with the benchmark of the meal the night before, well it felt a slight let down. 

Sunday morning and little did I know what was coming. We decided as the shower was as Andy said ‘The Devil incarnate’, for a couple of minutes it was perfect then it went scalding, the days have gone that I can just jump out of the way so Sunday I had a shallow bath. The bath was lovely until I came to get out and then you’d have laughed as Andy had me shuffle my bum to the back of the bath, he got in the bath (Stop right there lol! It wasn’t like ‘That’ ) Andy stood in front of me and had me place my feet against his on the non-slip bath mat I held out my arms and in a second I was standing next to him giving him a quick peck and saying, “get me out of here now” lol. As I dried myself I felt my leg and arm going, “Get me to the bed Andy” I was hit with a seizure, to cut a long story short I had another in the car about 20 mins after leaving the hotel, another on arriving home, yet another early evening and we were very late to bed, as I lay down at just after 01.00 my leg went off on one. So, an unprecedented FIVE seizures in a day, I’m so scared now, even trying to get up our stairs is scary as I feel so insecure. Andy had previously decided enough is enough and despite my previous protestations declared “You’re having a stair lift whether you want one or not lady! I hate all of this, I know it’s for the best but my tiredness, the ‘need’ for a stair lift are all loud and clear signs to me that I am deteriorating and that my proud independence is slowly being chipped away at, it’s so  bloody FRUSTRATING!  I can but hope that I improve after the surgery but my gut feel is this is me now and the surgery is just going to buy me some more time… These are hard realisations, very hard…

It’s March Tuesday 4^th I’ve got my pre-op assessment today. It’s one of those days, we’d tried desperately for someone to go with me but everyone local was busy with their own jobs and commitments, everyone is being brilliant sometimes it’s just bad timing and this was urgently rescheduled. Andy had to take the morning off work for this 11.00 a.m. appointment at Walton Neuro Centre. We arrived at 10.00 so plenty of time to get parked, take our time, book in and get a coffee. At 10.50 we walked the short distance to the outpatients waiting area and parked our backsides. The clock was ticking, time was passing, 11.30, 12.00 they’re running late, we cannot grumble we’ve had very little waiting at any time. At 12.30 Alison walked past to another room we’d seen Mr Farah disappear in to about 45 mins earlier. Shortly after Alison came over on her way back to her room, she was most apologetic , she had a patient in with her and she couldn’t send him on his way until Mr Farah had seen him, we said we understood and told her not to worry.  As it happened because my appointment was hastily arranged we were tagged on to the end of an already booked up ‘morning’. It’s a matter of course that each appointment slightly over runs so it was hardly a wonder that we were just on two hours late in.

The pre-op assessment if you’ve never had one is relatively painless. Alison filled in a book that the team use on the day, it details your condition to be treated, your general health, any problems etc. Also includes your list of meds and doses. (You also take your drugs in with you when you are admitted). You are asked about allergies and previous illnesses and operations. You even get asked if you have had Mad Cow disease (lol Andy says I’m a mad cow at times but I’m not sure if that qualifies hehe ).

You do have to have blood taken for blood tests, you get your height & weight done too I go ‘laaa la laaaa’ as I’m told my weight, I want my size 8/10 figure back NOW, Right now!!!!! lol – If only!

 I’m asked if I’d like to give my permission for the hospital to retain removed tissue in their tissue bank that they use for research & development , As we are desperate to assist in finding a cure for this and other cancers, I readily agree and sign a consent form. Daft as it sounds all of this took around two hours. We grabbed a quick bacon sandwich, I was overdue my lunchtime steroids. Andy drove me home it was getting on for 3.30 and sods law says I have to have a seizure start just after we come out of the Wallasey Tunnel. We made it home with our singing routine to try & distract my brain. Andy went and unlocked ‘fort knox’ and came back for me. Andy had only asked for the morning off, most would have said “Sod it, its not worth going in”, Andy did hesitate but his conscience got the better of him and he headed into the office arriving at 3.40, he worked until 8pm arrived home at 9pm, I feel guilty, I apologise to him but he pointed out “It’s not your fault hunny”, doesn’t stop me feeling a burden even though he constantly assures me I’m not.

Well, you are living this real time with me now, I am sorry it has taken so long to get here, I’m relieved we are up to date though, it seems important to me that you know my story to its conclusion irrelevant of when that is to be. Hey I can throw in more smiley interesting fun loving stuff now and get back on track with the advice giving, I apologise for the lack of this recently but as you’ll have gathered its been a trying few months…

We are out for lunch on Saturday with dear friends, Gareth & Susan, we’ve had to cancel so many catch ups it will be great to see them and it all helps distract from the operation. Sunday, we have to call the hospital bed management team for confirmation of what time to come in and to which ward, I suspect it will be around 4pm. I’ll get my ‘last supper’ then its NIL BY MOUTH except sips of water from midnight.

I’m not sure what time I’m in theatre Monday morning to rid myself of the latest bit of fluff but the operation, even going to plan, will mean around five hours from leaving the ward to getting back on it. We hope and pray that this goes to plan but truthfully any surgery is risky, you’ll appreciate that on top of the risk of paralysis there are greater risks, so as a worst case scenario and just in case, I’m sending you all my love and thanks for being with me and a significant part of my journey to date, you’ve all helped make a difficult time slightly easier… xxxx  As I entitled the blog ‘This is Au revoir, not goodbye…. ‘

 I truly hope the story continues and Andy will keep you all informed via the different methods we use including this blog.

To end on a more positive note, assuming things go to plan if you are in Liverpool whether we’ve met or not and you want to pop in if you can contact Andy he’ll advise if as and when it’s possible, I should be in certainly until Friday based on my first brain surgery.

It’s Andy here to close this one, I want to ask a favour of any of you on twitter, (suppose you can do it on face ache too) but Monday morning (between 8 &10) I’d love to get  #GoodLuckJulieShute  & #ClatterbridgeCancerCharity  ‘trending’ as testament to this amazing lady’s grit and determination. 

Last time around some high profile people tweeted Julie via my twitter account. You are all important to us but Celebrities and those with higher profiles than us minions help bring significant attention to an amazing lady and an amazing cause.. So if you can between 08.00 & 10.00 just tweet or post on Facebook the following

#GoodLuckJulieShute  #ClatterbridgeCancerCharity  julieshute.blogspot.co.uk  PLS RT.

  
 

The miracles shop is out of stock

It’s only Tuesday 24th February 2015 and my world has been turned upside down with the confirmation of Fluff being back, but there is no point in diving in to a pool of depression, as usual I have to pick myself up, dust myself down and get on with my life and the week is going to be busy and hopefully have a sprinkling of fun in it.

Andy’s brother Nigel & his lovely wife Nunu are over from Taiwan and staying with Andy’s Mum Maureen down in Warwickshire, they wanted to see me, I wanted to see them, they travel over every couple of years and I think we all recognise barring miracles there is a high probability this is going to be goodbye. Also you’ll have read in previous blogs about their amazing fundraising efforts for Clatterbridge Cancer Charity, close to £5,000 has been raised by them and their customers all strangers to us, so we wanted Nigel, Nunu and Maureen to meet the CCC team and to show them what the charity does with donations.

Wednesday is here and by lunchtime so are Nunu, Nigel & Maureen, Andy is at work but soon to head home, it’s fantastic to see ‘our family’ again and this time will be precious for us all. 

 

Andy arrives and we head to Clatterbridge where we grab a quick coffee as our  friend’s Elspeth, Louise & Karen appear to meet ‘the clan Shute’. We grab a photo opportunity so that N2’s customers in Taiwan can see where their donations ended up and some of examples of the types of projects funded by donations.

Nigel, Moi, Maureen & Nunu

Louise was giving us the guided tour of my almost second home of late. Clatterbridge came to be out in the countryside following WW11 previously being in Liverpool, at the time anything Nuclear was considered dangerous, too dangerous to have in a city centre so a site was chosen in the very rural village of Clatterbridge, initially not more than wooden huts it is now a state of the art facility with cancer treating technology so advanced and a team so pioneering some equipment they were or remain the only UK hospital to have. We didn’t get to see it but the next generation of equipment more advanced than the Novalis TX that my last treatment was done by is currently being installed and as of now this is the first and one and only ‘Varian Edge’ Cancer treating machine in the UK. We are informed that it is so advanced it can monitor internal organs that move and adjust the treatment beam in real time, some organs up until now have not been suitable for ‘Cyberknife surgery’.

Clatterbridge also has the only Proton Beam treatment machine in the UK and if I remember probably in Europe. It is specifically for a specific type of cancer of the eye (don’t ask me which or what I’ve got memory problems remember lol) Louise informed us patients travel here for private treatment from New Zealand, Australia, Asia and the middle east all contributing significant sums that benefit patients such as me on the NHS. CCC paid for the very specialist chair needed for Proton beam treatment.

We also passed the Research department where a dedicated team are seeking for the next ‘silver bullet’ to cure Cancer, any cancer, and this research is funded by CCC.

We passed the recently refurbished scanner changing area. Historically patients would change out of their everyday clothes into a gown behind a curtain one side of a corridor when the entrance to the scanner suites was the other side, totally lacking dignity for patients but perfectly acceptable under the NHS, CCC saw this as their opportunity to improve dignity and care for all patients and paid for the refurbishments, now patients go in to a changing room by one door then walk through a second straight in to the scanner suite.

As we walked the corridors we bumped in to Dr Haylock my Consultant Oncologist, with a smile he said “Julie, lovely to see you, what are you doing here? Aren’t I seeing you Friday?” I confirmed it is indeed this Friday and we introduced our family, Louise explained Nigel & Nunu’s generous achievements the other side of the world, it was an added bonus for them all to meet and it further demonstrates the level of care I’m receiving when a busy consultant can a) remember my name and b) takes time out of his busy day like this.

Charity funds have been spent on pagers so patients can go and have a drink whilst they wait for appointments to supporting a fleet of SIX cars provided by an amazing CCC supporter. The cars transport nurses and their specialist kit to patients at home who are too ill to attend the hospital. It is very humbling to see the cars, to hear the story behind their donation and it puts our collective (family & friends) donations to date in to perspective, we must do more but also, we realise every penny matters, literally EVERY PENNY!

Children/s Conservatory funded from donations to CCC

Thursday morning, we are all up early, Andy has to go to work, I have to take my steroid at 08.00 with food, Maureen is an early riser and Nigel & Nunu were up, they had to get down to Warwickshire as they were flying home the next day. It was hard for all three of us to say goodbye, deep down we know it truly is, the hugs as a result are stronger, Andy has left for work and I’m left to wave our visitors off, at least I don’t have to head to the laundry room to shed my tears today, ‘my empty house where no one can see me cry’…

In days gone by I’d have had the beds stripped and changed and the washing in the washing machine by lunchtime but these days such simple chores are too much for me on my own. Andy comes home from work after his twelve hour day and bless him, he now has to strip beds and fill the washing machine under my supervision lol. I let him off making the beds hehe..

Its Friday 27^th February and we are Clatterbridge bound for a routine appointment with Dr Haylock. On time as usual we were shown into one of the consultation rooms and chatted with one of Dr Haylock’s Nurses, she asked how I was and I explained not too clever, the increasing seizures and of course my concern that fluff was back, she left the room and went into Dr Haylock’s office and within a couple of minutes the man himself and two of his nurses were with us. The usual greetings were followed with a confession “Julie, I’m so sorry I’ve only just heard of your tumour coming back, the team at Walton haven’t passed the information over yet, I thought when I saw you Wednesday that you didn’t look well, now I can understand why”. We discussed the surgery, we hadn’t got the date yet and a little surprise was expressed at the Scan being scheduled for almost three week’s time.

Mr Haylock went on to discuss the post-surgery treatment options that ‘we’ will/can consider. It looks very much like my options are limited. There is just one form of Chemotherapy open to me called Lomustine or somehow abbreviated to ‘CCNU’. The only other options open to me are to consider Drug Trials and it seems my options are limited here too. The one trial comprises using the previously failed Temodal (but in a different presentation) with a spray called Sativex. Sativex has its origins as a derivative of Cannabis and although it only has trial drug status for cancer in the UK it is already legally available for a certain group of patients with MS. For the recreational drug users amongst our readers I’d say “Down boy!” this is not cannabis as you know it and no it won’t give you a high or the munchies lol. I’m dubious about this as my previous experience with Temodal leaves me with doubts. The only other option is a drug trial with a James Bond. CIA/MI5 style name, it’s called Checkmate143. It sounds promising BUT, just 24 hours earlier Dr Haylock had received an email from the worldwide trial team that no more patients are to be added to the trial. There is a slim chance the trial will allow another 120 patients on to it worldwide, can I be ‘that lucky’ to be one of the 120 IF it happens? I’ve got to come through my surgery unscathed first. What has become apparent is that all options are narrowing now. We knew this day and time would come but it’s only when you get here the truth dawns on you, inside I’m like jelly, Andy is asking questions, I’m zoned out of listening as the reality of my predicament is howling like a banshee inside my head, inside a week I’ve heard fluff is out to get me and it seems the drug gods are too. I’m entering the “I need a miracle territory” the only problem is the miracles shop seems to be out of stock right now…..