Back down to earth with a bump.

Belated, but in terms of the blog, it’s time to wish you all a Happy New Year. I’m obviously thrilled to see 2015 when I truly never expected to see 2014.

Things seem to have settled down since the ‘Explosion’ on Xmas Day, we spent New

Pauline Daniels

Year’s Eve quietly at a Country Inn on the peninsula called ‘Pollard’s Inn’.  We’d driven past the end of the road that this quaint pub is located on many times but never knew it existed. I attended a charity lunch here in December;  I was indifferent about going, in some aspects I’m seen as being very outgoing but I am quite shy when I don’t know people.  Anyway, between Andy & friend persuading me  I went and had a fabulous time, I met some lovely people including a lovely lady called Nicky who liked my Cath Kidston outfit and I laughed like I hadn’t laughed in a long time as we were entertained by the hilarious and talented Pauline Daniels. ANYWAY… back to NYE… I mentioned Pollards Inn to Andy and he checked it out, they have five bedrooms too so the next thing I know he had booked us in for a leisurely dinner and I only had to walk a few feet to my bed.

The food is amazing here, the rooms are on the better side of good, Andy is quite critical of hotels and restaurants, he’s stayed in more than most of us could ever dream of thanks to his various ‘executive jobs’ but I have to say his assessments of places are fair, so, when he says the food here is excellent lol listen up! It’s excellent. Dining close to a fantastic wood burner  It was a sober night, we aren’t big drinkers at the best of times and with my condition when you end up in hospital one of the first questions you are asked is “how much do you drink Mrs Shute?” 

Part of our advising those ‘on the same path’, some advice for you. . Check all your medicines labels regarding drinking and how it impacts, it may or may not. Remember it’s not smart or clever or fair on others to drink if you are advised not to, some drugs mixed with alcohol can affect you adversely or impair your judgement. I’d hope you consider your life and time here as precious, don’t reduce it further by taking risks and, do not endanger others by your stupidity in thinking ‘oh I’ll be alright’…  Remember too, answer Doctors honestly when they ask how much you drink, if you drink 20 pints a day, week or month, be honest, It will be in your own best interests long term, that assumes you want to live? Trust me when in my shoes you really do want to live forever…..

We drove home after enjoying our first hug and kiss of 2015, amazing what brings tears to our eyes these days, Kiss and hug each day like it’s your last day, one day it will be….

January 6^th and we are in to see Mr Farah, my fantastic Neurosurgeon and his lovely specialist Nurse Alison. We discuss the seizure of Xmas day, It’s nice to hear honest advice from an expert yet delivered with care. Mr Farah explained the seizures as bad as they are, they’re not going to kill me, that it’s understandable but it’s not essential to call for ambulances or to go in to A&E, he appreciates how scary the seizures are and politely explains the need to ‘learn to live with them’… Fluff has a lot to answer for!  We discussed my medicines; I carry a printed card with me that I laminated with all my drugs on and the doses. All of our teams and Doctors be it in A&E or my GP are stunned by this oh so simple sheet, it makes life so much easier for them and honestly, depending on how many you are on trying to remember them is crazy.

The one amend we had recently made was when in Scunthorpe hospital the Doctor told me to increase my steroid dosage to 8MG, it’s a high dose. I mentioned before I think, steroids are great but they are a monster in disguise too! I’ll tell you more about them in a separate blog.

Mr Farah is not a fan of steroids and is adamant they do nothing to prevent or reduce seizures, Oncologists on the other hand appear to not attribute them to helping seizures but helping reduce potential swelling that result in seizures, it’s a very confusing situation as a patient when two teams seem to disagree in a drug’s use.

We had a quiet uneventful couple of weeks by our standards until the bombshell of Henry collapsing and dying down at Maureen’s we had to dash down there and I spent the week with Maureen whilst Andy had to dash back to work for a couple of crucial meetings. The next weekend I wasn’t feeling too good and eventually had a seizure, it wasn’t a big one but big or small they are scary and exhausting, Andy as ever kept me calm and between us we minimised the impact of it. On  the Monday Andy contacted Helen, I had a scan scheduled but like Andy felt It needed to be brought forwards, as usual this amazing lady weaved her magic and my scan happened on February 6^th.

A week later Friday 13^th and Andy spoke to Helen, my scan had been discussed at a multi-disciplinary meeting on the Thursday the feedback was the previous tumour area also still the location of the Novalis Tx destroyed tumour had changed shape attributed to the tumour going through the process of ‘necrosis’ as in the bodies mechanism for getting rid of the now destroyed tumour tissue, the team felt that this process could cause pressure that in turn could cause seizures, my tumour site is very, very close to my ‘motor cortex’ as in the part of the brain that controls movement. My tumour site is on the right side of my head and it’s the right side of the brain that controls the left side of the body hence why when my arm goes ‘flipping’ It’s my left arm, the majority of my physical problems are on my left side.

Andy called me from a meeting room at work “I’ve just spoken to Helen, there’s no fresh tumour” I gulped, “There’s not?” I started to cry with relief, so did Andy, omg what a weight off my mind, I called the kids and broke the news to them, I truly expected to hear fluff was back. We updated our friends & the more distant members of our family; everyone was so pleased for me.

It’s St Valentine’s day, we had agreed not to do gifts, we love each other, we are devoted to each other and frankly what do you buy the woman in your life who is dying? We just had a leisurely day chilling out but I still didn’t feel good, I had a headache, it was a ‘heavy’ one.

Late afternoon I was in the kitchen when my left leg started misbehaving, I called for Andy and he was with me in seconds, “I’m not right, get me to the sofa quick”, we sat next to each other, I knew a seizure was about to start, Oh my god! All hell broke loose, my body started to shake, my left arm started to flip and curl up, again I was begging Andy to help me like Xmas day, my whole body felt like a million pins were trying to make their way out from under my skin, I was screaming in agony, by now Andy was kneeling in front of me, my left arm  clenched right up to my shoulder and my hand was bending at my wrist so downwards towards my shoulder too, the pain was excruciating, Andy was trying to bring my arm down but it had locked in position and it was still trying to bend!  You would think this was enough but as this was happening, my head and neck were shaking uncontrollably. This had never happened before I was scared witless, Andy was holding me but it went on and on and on… Suddenly like someone hit a light switch it all stopped instantly.  The seizure had last 17 minutes!  We hugged, we were shook up. I’m perfectly aware of my surroundings throughout my seizures, I’m not sure if this is a good or bad thing. As I tried to recover from this I was explaining to Andy how painful it was and without warning a second seizure kicked in! Oh god, I couldn’t stand another one like the last and I’ve never had two seizures in one day before. Andy realising the seriousness and the uniqueness of the situation, called 999 and asked for an ambulance, it was just after 5pm.

The operator was kind and went through all the usual questions that we are so used to by now, he had his mobile on hands free, we were assured an ambulance was on route and the operator said she’d stay on the line until it arrived and to let her know if I began to deteriorate. Andy thanked her and was holding me, the seizure was beginning to subside. I said to Andy, “She’s gone (the operator)”. Andy said probably not, she was probably handling another call and listening in to us, I should have bet him another crispy fiver for suddenly a disconnected tone came from the phone. I still wasn’t right but trying to remember Mr Farah’s advice. Andy still wasn't comfortable with how I was so  at 5.27pm he called 999 from our landline this time, amazingly ended up with the same operator and asked where our ambulance was, first she said that she’d tried to call us back two or three times, bizarre as we had no missed calls on the mobile, the ambulance was on its way apparently! Ten minutes later a car driving Paramedic arrived, this was forty minutes after the first 999 call!

The paramedic was great, he radioed for an ambulance on seeing me, “None available” came the response! Andy did his usual explaining who I was what had happened etc and he (the Paramedic) began to examine  me, he was of the view I need to be in A&E to be checked out properly, again he radioed for an ambulance update, still no ambulance available!! He continued to tend to me and suddenly my left leg started to ‘go’ again, at this he said to Andy, it might be quicker you driving her into A&E “It might be quicker and she’ll be treated quicker too”, to say Andy was unimpressed would be an understatement. The Paramedic had been here  40 minutes by now and remember he arrived forty minutes after the first 999 call!! So ten past six and the paramedic radios again for the third time for an ambulance! He was asked what was the priority level he responded “Hot” the response was staggering! “We are looking at 75 minutes minimum” Andy, well how he never hit our 13 feet high ceiling I don’t know. He just looked at the Paramedic and said “Forget it, I’ll take her in myself”! This was farcical and concerned I added “But what if I have seizure on the way?” The paramedic said he would follow and would deal with any seizure if Andy pulled over on the way. Thankfully the short journey was uneventful but I was drained and very scared.

I was quickly triaged in A&E and then my bed was pushed in to A&E to see a Doctor, Without going in to great detail it was a further 90 minutes before a Dr saw me, he was comfortable that I had fully recovered and was OK to go home, he suggested he would write to my Neurosurgeon, Andy said we would speak to them Monday. I needed to get home to my own bed, I was exhausted and could sleep for a week!

They say hell hath no fury like a woman scorned, well trust me hell hath no fury like a riled up Andy! Monday morning, his  first call was to the Neurosurgical team to update them on Saturday’s A&E admittance and then it was a call to our local A&E team to lodge a formal complaint about our treatment on the Saturday night, then an online complaint form filled in for the North West Ambulance Service , a formal complaint lodged with the Department of Health, then an email to The Secretary of State for Health Jeremy Hunt, another to the Shadow Health Secretary Andy Burnham and an email to our local MP Frank Field and it was barely 09.00!

Extra, Extra read all about us!

Well news of our appalling ambulance episode spread fast, our lovely journalist friend Emma Rigby at the Wirral Globe ran with the story, the next thing we knew the Daily Mail were expressing an interest in the story and then ITV News, our local news region Granada came out to interview us. Wow what an experience, they filmed for and set up for a round two hour, Ralph the ITV reporter and his Cameraman were amazing, this time I had no stage fright.  We needed to tell this story, someone will die unless urgent action is taken immediately.

A few links for you to the Wirral Globe article and our TV appearance on ITV Granada News.

http://www.itv.com/news/granada/update/2015-02-20/cancer-sufferer-angry-at-ambulance-delay/

http://www.wirralglobe.co.uk/news/11798687.Inquiry_launched_after_Wirral_woman_with_terminal_brain_cancer_has_to_wait_TWO_HOURS_for_emergency_ambulance_to_arrive/

http://www.wirralglobe.co.uk/news/11798695.GLOBE_Comment__Ambulance_delay_was_inexcusable/?ref=rss

http://www.itv.com/news/granada/story/2015-02-20/cancer-mum-left-waiting-for-an-ambulance-for-two-hours/

 

It’s time to close this particular episode with some words of wisdom and our usual thanks to those who have helped.

For those walking this path, whilst it’s probably not your last day, live each day like it is, if that’s a nice dinner on New Year’s Eve fine, if it’s an early morning kiss and a hug make the most of it.

Also, never give in, never accept second best and if you see an injustice try and right it, things will never improve if no one takes on the incompetents.

Our Thank you’s

The lovely lady  who introduced us to The Pollards Inn (you know who you are),  Pauline Daniels who made me laugh like I haven’t laughed  in a long time,  Alison & Helen  my specialist Nurses, an amazing un-named Paramedic and last but not least  Journalists Emma Rigby & Ralph Blunsom.