You will succumb to it

Hiya, I'm back, have to warn you though this one isn't going to be funny in the slightest.

I was feeling great recovering at home, amazing what fun and amusement Ju and I can have, Andy is back at work.

It's Tuesday, I knew we were going to Walton to see Mr Farah on Wednesday as planned for a review and the biopsy results; late morning our house phone rang, thinking it was 'The Drugs Police' (Andy) teehee bless him ,he calls me probably half a dozen times a day with the immortal words "Are you OK, have you done your drugs"? So I expected the call to be from him, wrong!. A lady was on the other end of the phone, she explained she was a nurse in a team who worked in conjunction with Mr Farah's team and that she was calling to tell me an appointment had been scheduled for me with the Clatterbridge team at the Walton Centre on Thursday. Thursday? I asked, I thought it was tomorrow? Not taking in the word Clatterbridge and the consequences of that the nurse explained "no, your appointment with Mr Farah is tomorrow as planned, this is another appointment with the team from Clatterbridge". It still wasn't sinking in, I just said oh, ok, I'll tell Andy. As I put the phone down I felt like I'd been hit with a hammer, my legs went and I had to sit down. The words in my head were "Oh my god, I've got cancer", Clatterbridge is our local Cancer Hospital, I was numb, inadvertently I'd been told I had cancer. I reached for the phone to call Andy at work. I explained the call even he queried the day, I then said "No this is Thursday, with the Clatterbridge team, so much for getting the biopsy results tomorrow I must have cancer!" Andy said "I'm on my way home....

On getting home the three of us, June was very much still here were in a state of shock, I felt fine in myself, how could I have cancer? It was a tough night, none of us slept well.

Wednesday 21st August 2013, we arrived at The Walton Centre and made our way to the out patients team, the wait seemed lengthy and we were beyond our appointment time and the place was busy, my name was called and we arrived in a consultation room where one of Mr Farah's registrars was sitting along with two nurses.  We shook hands and sat down having done the introductions and the apologies for the delay. I was asked how I was, "I'm not sure I replied, I had a call yesterday telling me I have an appointment tomorrow with the Clatterbridge team, so I assume I have cancer?" Nothing could prepare me or Andy for the bomb that was about to land..

The registrar, forgive me with the shock of all this we cannot recall his name, he started, "your operation was a complete success, we removed all visible signs of the tumour, unfortunately the biopsy results confirm this is an incurable form of brain cancer, whilst we have removed all visible cells this is a grade four cancer, it is aggressive, very aggressive". I felt Andy squeeze my hand, "what did he say?" ran through my mind. Andy for once was totally lost for words, I drew a breath and said "It can be treated though?" I'll never forget what followed, "we can give you radiotherapy and chemotherapy that's what Clatterbridge will discuss with you tomorrow but sadly it remains incurable, you will ultimately succumb to this" It was my time to go dumbstruck! Andy realising what was said asked "How long does she have?" The Doctor looked at me as he answered, "I can give you a rough idea, but do you want to know?", I shook my head "No!, no I don't want to know" Andy looked at me as if to say surely you need to know, I didn't, I wanted to wake up from this nightmare but we were both numb. The Doctor explained the Clatterbridge team would take us through everything tomorrow and treatment would start probably the following week. there wasn't much else to say, we were both reeling, we stood up to leave, it was bizarre hearing Andy politely thanking the Doctor for his time & I apologised for crying! One of the nurses sensed our distress, she asked if we wanted a quiet room to take this in, we said please. Outside we stood in the crowded waiting area whilst the nurse tried to find a room, Andy and I were clinging to each other for dear life, we were both crying, in my mind I was hearing "I'm going to die, I'm too young, It's not my time, oh my god, my family" People around us must have realised we'd been hit with bad news, I suspect to this day none of them will ever realise just how bad.. The nurse appeared she'd found a room with one chair in it, she offered to get us glasses of water, we accepted, I sat down Andy knelt in front of me, we grabbed each other and wailed, it was hell for us both, no words were spoken we just sobbed and sniffed. The nurse returned with our water, well one cup. we thanked her and she offered her sympathy, we thanked her as she explained about how excellent Clatterbridge was(is). I still wasn't taking much in, I was thinking about how I was going to tell my children. In a split second my rational side kicked in "Get me out of here".

On the short but oh so long walk to the car, neither of us spoke, we were numb & devastated, as the remote opened the car doors Andy opened mine and I got in, Andy got behind the wheel,he started the car and he turned to hug me, "get me away from here, I want to be somewhere quiet".

Andy drove for what seemed like an age, "I'm taking us to Crosby" he said, its five miles away and  where the mouth of the Mersey meets the Irish Sea, and where Anthony Gormley's Another Place statues feature on the beach and in the sea, its tranquil. We parked up and we hugged each other for grim life again we cried like babies, we cried until my mouth was dry I needed a drink, there was a burger van, Andy went and got us tea.... Our tears had run dry, Mrs practical was back, "We need to go home to tell June, she'll be worried, I'll call her to tell her we are on our way".....

Let's Get Serious

So, I was being referred to a consultant Neurosurgeon at Walton Neurological Centre in Liverpool.

Within a week of my discharge from Arrowe Park Hospital, Andy, known for his determination to drive things along had called the hospital appointments team. They were polite, aware of  my case but said the appointment couldn't be made until the Consultant had reviewed my file. He asked what sort of time line this would comprise, difficult question for them really but he asked what was the absolute outside dates they were currently making bookings to, the response was "Up to 12 weeks". Andy knew it wouldn't be that long and he knew this team couldn't move an appointment along so he politely thanked them for their time.

It took Andy about 10 minutes to do some research and to call the hospital back asking for the Consultant's Secretary, at this point if necessary and you may find this right or wrong but Andy was prepared for us to pay for a private consultation if necessary (In the end it wasn't), I'm absolutely no good at this sort of thing so leave it all to Andy really, I'm truly grateful I've got this 'rock' beside me. The upshot was my Consultant was off for a few days but she'd discuss it with him on his return after the weekend.

Monday 22nd July 2013, just after nine a.m. Andy called the secretary of  Mr Farah, my Consultant Neurosurgeon for an update, the conversation went like this. "I'd put Julie's notes on Mr Farah's desk for him, he's just left for surgery and as he walked out he handed me Julie's notes and said I need to speak to you about Julie later, as soon as I've spoken with him Andrew, I'll call you back". Around four p.m. Andy received a call, "Mr Farah would like you to bring Julie in for a consultation tomorrow morning, be here for nine a.m. explain you don't have a fixed appointment, the team will be aware and Mr Farah will see you as soon as he can".. Wow impressive but also scary, why the urgency?

Tuesday 23rd, we duly arrived in time and checked in. We waited around 40 minutes before we were called in to see Mr Farah. Conversation went like this.

Dr F: You've been referred to me by Arrowe Park, tell me what you know.

Andy: Well Julie has had several seizure like episodes resulting in several hospital admissions during this period scans have taken place, the team at 'AP' could see a mass but were of the view the scan wasn't clear enough to distinguish if the tumour was in the meninges membrane or actually on the brain"
Dr F: It's on the brain, it's clear, it's on the brain.

(Andy interrupting: If one thing has become clear to me in the dealings we've had and are yet to share with you it is that Hospital Doctors and Consultants, unless it's in their field of excellence/experience won't want to deal with or discuss the subject. In this instance Mr Farah was instantly adamant and correct, this thing was on Julie's brain, the Stroke Team would have know this too. It may be right it may be wrong I'll leave you to decide if in this instance and others to come if this apparent 'policy' is right or not)...

Andy: Ok, how large is it and what happens next?

Dr F: Let me measure it (By now we were looking at 'fluff' in my head on the screen before us) - It's just over a centimetre in size. As for what we do next, well in my eyes you have three options.

1. We do nothing, but honestly I do not recommend this.
2. I can have you in and we can do a biopsy and establish if its malignant or none malignant
3. I can have you in for surgery, we can take a biopsy and get the results whilst in theatre and then remove it if its malignant but if we are at this stage truthfully as it has to come out, I'd suggest we just do that. I need to warn you though there is a very small risk of you losing some or all of the use in your left arm & hand.

Andy looked at me and asked "What do you want to do", Mr Farah interjected, "I don't need an answer from you now". I just looked back at Andy and said "There's nothing to think about, it has to come out, I'm right handed if I have to cope without my left arm so be it".

Andy: Ok how soon can this happen?

Dr Farah: I can schedule you in for August 19th, the operation will take around 3-4 hours

We agreed the date and we left, mixed feelings, OMG I have a brain tumour....I need an operation. Andy reassured me as we went and got a coffee. "Hunny, I'm truly impressed by Mr Farah, I like his approach, I've got every confidence in him" he was squeezing my hand reassuringly. Hard to smile and to feel elated though when you know something 'Fluff!' was growing on my brain. The good thing was too, not too long a wait 27 days and in that time I'd got to have more scans etc., Mr Farah had said if I showed any more problematic signs to call his team and he'd have me admitted immediately but he felt this time scale was ok.

Out of the blue week commencing 5th August I got a call from Mr Farah's Secretary "Julie, Mr Farah would like to admit you on Sunday for you to have your operation on Monday (The 12th), a slot has come up".. "I'll be there" I replied" I called Andy and told him the 'good news'...

Sunday 11th and I'm admitted into the wonderful Walton Neuro Centre in Liverpool. I/we cannot speak highly enough of the teams here, it is an excellent hospital and facility proudly serving the Northwest of England. I really could not have been in safer or better hands.

Monday morning and although well outside of visiting times Andy sneaked on to the ward around 08.00 to see me, it's hard not to think like this but we both knew the seriousness of the surgery and the possible outcomes including in the back of our minds that we might not see each other again. We both have positive outlooks but even at times like this you cannot ignore the risks and possible outcome. by 08.45 I was on my way down to theatre..

Ok Andy here for this bit: I spoke to the Staff Nurse and asked how long did she think Julie would be in theatre and recovery and before she was back on the ward, she thought it would be around 1pm but to call for an update. I went out to my car drove off to get some breakfast with the plan to go home, it's only about 8 miles away, over breakfast I decided I'd go back to the hospital and wait in the car, I wanted to be on hand. By my standards I was pretty patient. I called at 1.00pm for an update, Julie was still in theatre. I called at 1.45pm, still in theatre.. five hours after leaving the ward... I called again at 2.15 and it was suggested "Why don't you call us about four for an update?" My response was "Why don't you wait for me to arrive on the ward in about five minutes!" By the time I got to the ward Julie was back on the ward sitting up drinking tea!!! I was shocked, I expected a woman with her head heavily bandaged and dropping in and out of sleep, not this! (see the picture).....-------------------------->








Is this not unbelievable? And Mr Farah had done an excellent job not only completely removing any visible signs of the tumour, Julie suffered no long term side effects and his sewing would be a credit to any fashion house designer. Look at this! (sorry if you are slightly squeamish) Note to others we thought I'd be having my head shaved or part of it, you can see and be assured that isn't always the case or necessary.

And here 'we' are later that afternoon, don't you just love the DVT 'stockings'? For the more observant amongst you, 'madam' has her own cupcake mug with her, no paper cups for this one hahaha.


Time for another of Andy's insights.. Julie's best friend introduced to you all in her last blog 'Ju' (for June) was staying with us, as soon as she knew of the planned hospital admittance was on the next train from Grimsby and with us for as long as we both needed her here.

Ok, the insight, If you have to go into hospital obviously friends and family want regular updates. from personal experience it is exhausting, I was jumping in my car straight after evening visiting (so around 8pm) and hitting the speed dial to call family, Julie's Dad, Then her two children Aaron & Emma, then my Mother, then close friends, even with the luxury of the car phone (hands free kit) I/we were still making calls at 10pm, I'd been up since six and had was putting in twelve hour days commuting and at the office. So 10pm still not eaten, still not contacted everyone! Most of our closest friends are on Facebook so I set up a private group on Facebook and updated everyone else daily by this method. It took the pressure off , removed the feelings of guilt and we could add people to the group as needed. We still use the group periodically today. We have amazing friends but as the other half you need to look after yourself too and even going through this daily routine for the five days Julie was in was exhausting. My advice is Contact your nearest and dearest, ask/delegate them to inform other relatives and update everyone else via a facebook or email group.

Right It's Julie back to end this particular blog. Fluff had gone! Not without a fight it seems but Mr Farah had obviously heeded my previously mentioned housekeeping instructions teehee. The evening of and the next day Fluff wanted a fight, twice I had to hit the emergency buzzer for help, I totally lost the use of my left side I cannot describe the feeling of panic and horror, thankfully both episodes passed after two or three minutes, still felt like hours though, I didn't want to be paralysed, I knew and had been warned there was a slight risk I would suffer damage to my left arm function during surgery but god, I so didn't want to be completely paralysed. Mr Farah and the registrars believed this was down to temporary post-op swelling and increased my steroid & fuzzy drug dosage, as it never happened again thankfully they were right. Four days later I was home and we were due back in on the next  Wednesday the 21st for a review and the biopsy results.......

We'll leave it here for now and finish with our sincerest thanks to Mr Farah and the full team, his Secretary, The ward, theatre, outpatients and the appointments teams, we are forever grateful oh and let's not forget 'Ju'... .

The Mystery of Fluff

Why “Fluff” I hear you say…

Hahaha… Journal Jokes! Maybe I’ll get to a few of those when my quick thinking sense of humour and impeccable patience returns! Thanks to the drugs for the brakes on my quick thinking blonde brain on that one lol, I’m sure the peace is giving my amazing man, our family and truly fantastic friends a rest from my constant “jibber jabber” hehehe

I have to say I have the most treasured and amazing people in my life right now, Armed guard duties are abound for some time to come, along with my irritability and need “to do stuff” (yeah you got it, dusting, cleaning) they need a sainthood!

My lovely friend Ju, who knows me upside down and inside out, has such a fantastic sense of humour and has the ability to poke the bright side with a sharp stick of jest, decided to help me name the thing (Growing in my head)…. It is now “FLUFF”

Well my kids and friends that know me well would call me a bit of a “Mrs Bouquet”

If it doesn’t move dust it! If it does move dust it! Lol

No bit of fluff is safe… I’ll pick it up and put it in my pocket if necessary!! Well guess what?

This “Fluff” ain’t hanging around for long either! I’m gonna teach the surgeon how to do housework to my standards ;)

Until then we have fuzzy drugs to stop the little blighter making too much mess up there :-)

IF you needed to call an Ambulance would you know what to do?

Whilst this is Julie’s blog the purpose of it is to help others on this journey, currently Julie has been explaining the background to  the initial events. Part of what we want to do is help guide those on a similar journey and bring up subjects that you may or may not encounter and how we dealt with them. I hope this guidance helps.

For example:

My last piece said don’t ignore even simple symptoms or one off events, to that I’d add these pearls of wisdom as the partner of someone having lets call them at this stage ‘problems’.

a)      Stay calm at all times – you need a clear head and panicking or mithering as we say up north will only add to your loved one’s distress. Even at times like this Julie is more concerned about others than herself, I suspect your other half would be the same.

b)     If you need to call the emergency services (We’re getting a lot of overseas readers – thank you, fyi 999 is the emergency call number in the UK) dial 999 stay calm and ask for the Ambulance Service – remember the operator at this point is handling calls for the Police & Fire Services too so all you need say at this point is ‘Ambulance Please’ – don’t go beyond that this person cannot help and yelling at them certainly won’t. They’ll transfer you to the Ambulance Service immediately.

a.      At this point stay calm and be polite and precise – do not shout. An example of how the call should go is: “my name is Andy Shute, my wife Julie has just suffered a seizure/suspected stroke following discharge from hospital yesterday”

b.      You’ll then get a series of questions asked of you,  the first probably what is your address?– Your concern will be we need an ambulance not questions! Be aware the operator will at this stage (without speaking) have already arranged an emergency ambulance or paramedic despatch, they’ll be on the way.  So stay calm and answer the questions these are essential and the operator will be relaying this info to the paramedics and ambulance crew live.. Some questions may get asked twice, again just go with it, arguing with the operator that “I’ve already told you that” is not helpful, best they are accurate and you give them the info as soon as possible.

c.       In emergency situations the operator will often stay on the line with you until the ambulance/paramedics arrive, this is twofold 1) It helps reassure you and 2) it enables them to advise you should your partner’s situation change/deterioriate – again they’ll relay that to the team on route.

c)      It’s probably helpful (but not essential) if you are calling from a phone with a hands free/Speaker facility – that way you and your partner can both be assured by the conversation and if you need two hands they’re both free.

d)     Make sure you or anyone else there opens your exterior doors, you really don’t want the paramedics ringing the door bell and waiting for you to struggle downstairs to open the door – remember every second can count here. Make sure passage ways are clear if they need to use a stretcher or wheel chair, make life easier for them.

e)      Once in the house and with your partner. Briefly explain the symptom(s) and background but stand back from your partner, these guys have equipment with them and need space to get to your other half. You’ll want to help but right now the paramedic is all your partner needs.  Be on hand to answer questions but I’d say at this point unless spoken to keep quiet, they need to concentrate. If they speak to you, you might want to ask “Is there anything I can do” but besides this the best help you can give is to stay calm, keep out of the way and speak only when spoken to.

f)       You may or may not decide to go to the hospital in the ambulance, in our instance I chose not to for a) I needed my car to get home and b) it gave me chance to get a small case ready for Julie knowing she would probably be admitted. IF YOU follow the ambulance to the hospital in your own vehicle under no circumstances ‘follow them’  by that I mean they will be exceeding the speed limit, jumping red lights all of which they are trained to do and are legally entitled to do, you on the other hand are NOT! You need to get to the hospital in one piece, consider others on the roads not just yourself, keep your concentration. You’ll find the difference in arrival times is minimal and your partner may not have hit A&E even by the time you get there.

g)      Once at the hospital go to A&E reception and explain your reason for being there, they’ll get you to your partner  straight away – Again be polite, I’ve seen hospital staff being verbally abused for doing their job, it is not fun, nor is it ‘big or clever’ staying calm is the key to all of this.

h)     As with when the paramedics arrived at your house – remain calm and stay out of the way and speak when spoken to. You in a distressed state is not going to help anyone.

i)        We keep a note book almost like a diary of events, often it is easier to hand something like this to the A&E Doctor to give him an idea of what happened and when (especially with multiple recent admittances), they’ll seek clarification from you both.

I did clash with an A&E Doctor during Julie’s second admittance (In Lancaster Royal Infirmary) The circumstances were this.

During Julie’s very first admittance the A&E team conducted tests on Julie, one was asking her to touch certain parts of her body with her eyes closed (Nose for example) also to outstretch her arms and keep them straight, it fast became apparent that there was weakness in Julie’s left arm for it dropped lower (limb weakness is a recognised symptom of a stroke). In the second A&E The doctor conducted the same test with Julie’s eyes wide open.. Julie is both dogged and determined and I knew she would see this as a challenge not an aid and would fight to keep her left arm straight, she did hahaha.. I said to the Doctor “During Julie’s previous admittance when doing this test with her eyes closed her left arm dropped”, he snapped at me to the effect of “I think you’ll find I am the Doctor around here”… I just responded “Fine” and shut up and stood away from the bed. He did though do the eyes closed test and sure enough the arm dropped.. About an hour later the Doctor apologised to me saying he’d been on call and in A&E most of the previous 48 hours, and added that he should not have responded like that to me. I understood why he had, I don’t regret highlighting the test or this subject, but equally I knew it was not going to help Julie if I started a war of words with the guy right then. The UK NHS system whilst excellent is so because of committed teams who work long hours for often little reward. Bear with them if they get snappy with you and above all follow their requests. 

 

Andy..

Back at Arrowe Park Hospital

So… you still want to know about fluff?  hehe.. sorry, I’m keeping you waiting a little longer; my next blog should introduce fluff to the world.

We made it home from Lancaster Royal Infirmary and was I pleased to see my bed!

Monday Morning, 15th July, we woke, Andy and I were talking as we lay in bed, suddenly I felt ‘the flip about to start’ an instant feeling of panic! not being able to stop it, I was feeling so out of control.

At the first mention of it Andy had grabbed the phone and had dialled 999 and was asking for an ambulance, as he talked and comforted me the sensation faded again but the heaviness in the arm remained, the operator told Andy a paramedic had been despatched and an ambulance would be following, Andy ran down stairs and opened the front doors ready for the medics and ran back up to me. Thankfully we’re less than two minutes from the ambulance station so whilst the emergency operator remained on the phone to Andy he was (now it sounds hilarious) stepping into Jeans trying keep hold of the phone, keep his balance, and look out of the window looking for the paramedic whilst comforting me!

Andy confirmed to the operator the paramedic was here and ended the call instructing the paramedic through the open window to come straight up. In no time I was having sticky pads stuck all over me, I was connected up to an ecg, was also having my temperature and blood pressure taken. The paramedic was using his phone and radio. He wanted me admitting to hospital having listened to our description of what had happened and on top of yesterday’s episode.

20 minutes(!) later an ambulance arrived, the paramedic had been trying furiously to find out what the delay was and was being told there was one (Ambulance) on its way. To this day we don’t know what happened, the crew explained they’d been called on to the peninsula (Wirral is a peninsula and shares its services with Liverpool on the north bank of the River Mersey) to attend a male patient but were stood down on route so having just exited the Mersey tunnel they turned around and headed back to Liverpool only to get a shout to come to me! They were badly briefed for they were still expecting to see a male patient! Note to ambulance crew Woman------->

 

The paramedic briefed the ambulance team they too felt that I needed to be in hospital however I was almost back to my old self, just the heaviness in my arm again and of course I was worried, I actually walked to the ambulance very slowly.

The ambulance crew were brilliant they warned me we would be travelling with ‘blue & two’s’ as in sirens and flashing lights, apparently in the cases of suspected strokes its standard protocol. Andy stayed behind to lock up then follow us.

I was straight in to A&E to be triaged; Andy arrived just in time to meet the Doctor who was thankfully the Doctor I’d seen on the Wednesday before on my very first admittance. He examined me and then explained he felt these were not TIA incidents and felt the apparent meningioma was part of the problem. He had me moved back on to the stroke ward again whilst more tests took place and I was kept under observations. I had one or two more flipping incidents (Struggling to remember some detail) on the ward but I soon recovered back to ‘normal’. I’d been put on steroids by now but just a low dosage as a safety precaution. I remained in hospital until Thursday 19^th  when it was decided I need to be referred to a neurosurgeon for they were now convinced these were not strokes/Tia’s but still adamant they couldn’t say for definite what the scan showed if it was in the meninge membrane or if it was actually on the brain. Mid-afternoon I was given all my meds including a new one to start taking from the next morning, a drug medically known as Keppra however,  quickly renamed by me as ‘Fuzzy drug’. ‘Fuzzy drug’ is an Epilepsy drug (no I do not have Epilepsy) to help control seizures.

Very mixed emotions at this point, I think I’m relieved to know I wasn’t having mini strokes but also concerned by the thing in my head. Well we said our goodbyes and walked off the ward. We’d walked to the elevator but I began to feel as I now call it whooshy headed, (you’ll get used to my quirkness soon teehee) I felt off balance and my arm was getting heavy again. There were seats close by and we made it to them, after a couple of minutes I said to Andy “lets go”. We made it to the elevator, the door closed and as we descended the one floor I felt shaky again, part of me wanted help, part of me wanted to get out of the hospital. Andy was extremely concerned he had me sit down, I was panicky. Andy called the stroke ward and sought advice he explained where we were in the Hospital. Although discharged they told us to wait where we were and one of the nurses came down with a wheel chair and took me back on to the ward where one of the Doctors saw me Still at a loss he told me to take my first dose of ‘fuzzy drug’ now. Within half an hour I felt better and this time was wheel chaired to our car. Once home I rested.

Andy and my closest friends suddenly became guardian angels; I wasn’t being left alone whilst Andy went to work. It seemed the fuzzy drug was having the desired effect; I wasn’t having any more ‘flipping’. I was feeling much better and our lives needed to go on irrelevant.

So in just over a week, I’d had three hospital admittances to two different hospitals, two ‘blue light’ ambulance journeys, three brain scans, around six tia’s/flipping episodes, two new drugs and a partridge in a pear tree and still no one knew for sure what was wrong with me…..

Worrying times

Why 'Fluff's Journey' you've been asking, hehe, all will be revealed soon.

So Andy has explained the scary event in my arm and hand with them doing their own thing that resulted with me ending up in A&E, I truly wasn’t overly concerned at this point but when they started suggesting TIA’s as I had spent a huge part of my working life as a healthcare assistant I realised I’d probably been 'lucky' but equally as I knew I was heading for the stroke unit for observations and follow ups I was beginning to feel something wasn’t right,  I knew though that I was in the best place for now.

Overnight I had a relatively peaceful night but it was a hot summer and hospital wards aren’t renowned for their air conditioning and stroke wards are often full of the elderly who are confused & frightened too, it can and it was in this case a noisy combination bless them.

Next morning I was sent down for a brain scan, later that day I saw consultants and doctors none were unduly concerned beyond still believing I’d had a TIA they decided though to  keep  me in for another day. On Day two the team said they felt  on checking my scan the definition wasn’t clear and so wanted to arrange another, they felt I was well enough to discharge me asking me to come back the next day, for the scan and they’d then be in touch with the results. I went home and slept well in my own bed, there really is no place like home! Saturday morning we were back at the hospital for the scan and we’d already had a social commitment meaning an overnight stay in Bolton. I felt fine so we saw no reason not to go. We had a great night but I was tired by about ten p.m. so we retired to our room and I had a decent night’s sleep. Next morning, we had a leisurely Sunday breakfast and we decided to drive the 50 miles to Morecambe where one of my brothers was then living to catch up with him. After an hour or so we said our goodbyes. By now I was starving and ‘Ben & Jerry’s’ as I had nicknamed Franky & Bennie’s American restaurant was just around the corner  & we headed there for lunch.

We’d been in the restaurant long enough to order our food, drinks and to have eaten our first course. Andy & I were romantically holding hands across the table, I suddenly felt my arm going into its flipping mode again, OMG I was petrified, I was shouting help me, help me, please I begged out loud I don’t want to have a stroke. I was frightened, Andy yelled at the Restaurant Manager to call for an ambulance and was trying to console me, from nowhere, well an adjacent table actually, a young lady came over, she was it turned out a GP & she calmed me explaining I wasn’t having a stroke, by now Andy was also dialling 999 and was talking to the emergency operator, 3 minutes later an ambulance was outside and paramedics were taking control of the situation. In minutes I was in Lancaster Royal Infirmary A&E department where an excellent (but typical of the NHS) but overworked and over tired Doctor began to do tests on me. He sent me for a scan and confirmed there was something showing, their Radiographer was suggesting it was likely to be a ‘Meningioma’ basically a benign tumour more common than we think, that sits on the membrane between the skull and the brain (Click on the link below for more Meningioma information) People can have these for years and not be aware of them and live perfectly well. The A&E team kept me under observation for around 6 hours and during that period I was fine and showed no signs of further problems. The team felt there was no reason to admit me and so I was discharged, I really didn’t want to be in hospital miles from home, I wanted my bed………

Meningioma Information

 

PS. Despite the A&E Doctor comment (that Andy added, he'll explain his reasons for this in one of his posts) we both felt I was at all times in very capable  & caring hands both of the Doctor & of the Nursing team at Lancaster RI A&E, my sincerest thanks to them.

 

 

 

Never ignore even the most simplest of things when it comes to your health

Hi there, this is 'the other half' Just to get some meat on the bones of all of this and without stealing any of Julie's thunder, I'd like to share my side of what turned out to be a pivotal day in our lives. As the blog is to try and assist others on this same path what I'm about to share may sound simple advice but I bet at sometime we've all thought "Ah it's nothing don't worry about it" There is a lesson here...

10th July, 2013, A Wednesday evening, I'm driving home from my office 40 miles from home, its been a normal day. Julie and I have chatted numerous times as usual and we'd decided as soon as I got home we'd head to Asda to do some shopping, it's only 3-4 mins drive from home, so my usual response was "I'll call you as I exit the Mersey Tunnel" which means meet me outside the gates.

It was a sunny day so I wasn't undluly concerned to see Julie sat outside on the door step as I pulled up. Once in the car as I drove down the road the following conversation took place.

Andy: Hi hunny, how are you.
Julie: Ok I think though the strangest thing just happened, (laughing) I was on the top floor (we have a big four storey Victorian house - yes just two us rattling around it) and I went to get a sheet of paper out of my printer and my arm wouldn't do what I wanted it to do!
A: really? Tell me more
J: Well as I reached for the paper with my left arm it moved back towards my body from the wrist. I felt funny for a second or two and thought oh my god I'm having a stroke! I got down stairs and did the Stroke 'Fast' test in the mirror (more on this below for those asking what's that?) I was fine but I didn't want to risk passing out in the house and the door locked so I sat on the step waiting for you.
A: (By now we are just in Asda's car park, I stopped the car) So how do you feel now?
J: Fine, its weird its gone. 
A: How does you arm feel?
J: Well it still feels a bit heavy.

Without speaking I spun the car around and whilst some may say it wasn't the right thing to do as an experienced driver who regularly drives 60,000+ miles a year, I headed for our local A&E about four miles away at speed. I remained fully focussed but something told me speed would be important here, waiting for an ambulance was not going to be an option and after all it 'wasn't anything too serious was it?'.....................

Despite explaining to the A&E receptionist I thought Julie may have suffered a small stroke there appeared to be no immediate rush but at times like this five minutes can seem like 2 hours.

Soon Julie was in with the amazing A&E team who (at the time) felt she was having a 'Mini stroke' (Medically known as a TIA or its full name a Transient Ischemic Attack) More here. 
Link to NHS TIA info

Soon after Julie was transferred to the Hospital's Stroke Unit for further observations.

This was the start of our journey but the lesson learned was ignore nothing, Julie looked 100% she was laughing, we both did as she described her arm as she went on to call it 'flipping' but I thank the lord that my gut feel was this wasn't something that just happened and was going away. Seriously, I'd say to you all, risk looking stupid but be safe, NHS Staff are very understanding and with that note I'll add my sincerest thanks  & gratitude to the A&E Team & Stroke Ward Team at Arrowe Park Hospital, Wirral. 

And so it begins

Hi My name is Julie Shute

 I’m on an incredible journey, I’d like to share it with you….

When you’re told you have any form of cancer let alone an incurable form of brain cancer it’s like being hit by Mike Tyson, it’s unreal, it takes your breath away, you are dazed and scared..  Well let’s not fool anyone this is scary and life changing for you, your family and friends!

I, well myself and my wonderful husband Andy, would like to share our experiences with you to hopefully (if you are in a similar situation) remove some of the fear and mystery that surrounds cancer and its treatments, our aim is to enlighten you and hopefully assure you.

We hope you find it informative and we’ll make a difficult topic as light hearted as we can, life is too short for anything but fun!

Who am I? 

Me age 8

 Well I’m a crazy blonde, Born in 1961, so yes that makes me well over 21 , originally a “Lincolnshire lass” part of a family of five children, I have four brothers, you can imagine how much fun that was as we grew up , I’ll tell you more about them later…. For now though “This is all about ME!”

Vivienne of Holloway

Although I was born to the 60’s I am very much a forties & fifties kind of girl, I love vintage clothing, I’ve always been very ‘girly’ loving “swing dresses” in particular those made by Vivienne of Holloway and Cath Kidston, I could so easily have been a fifties “stay at home housewife” , cooking, baking, crocheting  (all of which I love doing) and bringing up the kids, waiting each night for those immortal words “Hi Hunny I’m Home” …. Ok so back to reality…..
 

I have two Fantastic children from my first marriage Emma and Aaron , both with long term partners Bob and Vicky with three children each of their own!  Giving us SIX gorgeous grandchildren Abbey, Abbie, Chloe, Millie, Olivia and finally a little boy Evan.. that makes us Glam-ma and Grandy lol

Although my first marriage didn’t work out.. surprisingly to some my ex inlaws, myself and Andy all get on really well (sounds crazy huh ) in fact my very best friend of 34 years, June is one of my ex’s sisters!

Andy and I always have a chuckle when people ask … how did you guy’s meet? I/We respond “on the internet” in days gone by when everything was “steam driven” before Face Ache, ooops sorry I meant facebook  … Yahoo had chat rooms and we said hi, shared many messages and got to know each other, Andy worked for a large pharmaceutical wholesaler and lived in Birkenhead, whilst I worked in the healthcare industry the other side of the country in Grimsby,

Andy had customers close to Grimsby and offered to take me out for dinner one night when he was next visiting his clients… more on this later but suffice to say several years later and just over four years ago we were married… it was my fairy tale dream… one of the most amazing days of my life…

Three years on from that amazing day our lives are about to change forever….