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.