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