Milestones

 Wow, I didn’t realise so much time had passed since my last blog, so I’ll start with apologising for that.

It’s been a busy time settling back in to home, it’s weird it's home but I can only see one room, my life now exists in what was our dining room, it takes some getting used to, I feel frustrated, often this results in my OCD raising its head and god help anyone who is messing up the dining room table, I need everything to be just so. I know I’m hard work at times I can’t help it though, this is me and I’m still Mrs Bouquet even though I’m ‘trapped’ in my bed. It’s hard to describe the feeling of frustration from my loss of independence, I’ve always kept the house tidy, even now I occasionally make Andy take his iPad upstairs with face time on so I can see real time that he’s not spinning me yarns when he says it’s tidy up there, there is no hiding place from my beady eyes hehe.

Well I’m reaching milestones I never thought I’d make, the first to tell you about was our fifth wedding anniversary that we celebrated on 19^th June, it's extra emotional this year, every day is a rollercoaster of emotions but more on that below but for whatever the occasion now I know ‘it’s inevitably the last’. Andy booked the day off work, I’d told him not to buy me anything, he regularly buys me flowers though, I tell him off for that for it gives me the feeling of being in a funeral home already, it’s a tough one for they do brighten the house up and I do love flowers, anyway he actually listened to me at the time, most unusual for him hehe. We just had a quiet day and he cooked me a really succulent sirloin steak with sauté potatoes, he showed it all to me then in my now special non-slip plate and my oh so special spoon too, Andy has to cut all of my food up into bite size pieces for me now, it's amazing how much we take for granted even a simple task like cutting up food is, then Andy joined me sitting next to my bed, we didn’t think I could drink alcohol with all my drugs so we didn’t even get to have a glass of bubbly.

I’m into a routine now with my carers and the nurses, it does make the mornings hectic though, I’d asked for some changes to be made to everyone’s schedule for as it was the nurses were arriving from around 10.30 and not long after they left around noon the carers would come and get me out of bed onto the commode and then wash me, most days initially I was going straight back into bed for my next visit would be around 6.30 and I felt unsure about being out of bed so long sat in my super dooper chair, well it was until it broke down recently but more on that later. I also felt a lazy trollop just getting up at noon, I want to be up and maybe dressed in day clothes as opposed to my nightie at an early hour. Andy spoke to the team he explained how I felt and what I really wanted, he also put over a case that said most of my calls were just for personal hygiene reasons (going on to the commode) and for trained skilled nurses to be calling just to do that seemed a waste of their skills and resources, with no disrespect to my agency care team who are excellent at what they do as in caring for me, keeping me clean, changing my bed and Steph & Ann in particular who always leave me feeling really good. So a new care plan was agreed and I now get three visits from the care team the first around 9.00 a.m. (perfect) then the Nurses come around 11.30, they check me out also they reload my syringe driver, this device delivers a regular dose of the sedative that I’m on 24/7 , sadly one of the symptoms fluff causes is to make me anxious, I worry about the daftest of things to the point that it upsets me, this helps ease this evil side effect. After the Nurses leave I’m then back to my next carers visit around 12.30 The girls are then back again around 6.30pm and I get a final visit of the night from the nursing team to ‘tuck me in’ and make sure my syringe driver is ok too. The syringe driver is powered by a battery and occasionally the alarm goes off or rarely but it does happen sometimes the piece that goes into my thigh comes out and then we have to call the Nurses day or night, they’re always so understanding when they arrive.

I hate being stuck in bed so I do on the shorter periods between visits sometimes sit out in my luxurious reclining chair (or I did grrr). This is as good as life gets right now for me, these four walls….

Again as part of helping anyone on a similar path if you aren’t 100% comfortable with your care package as it’s called, ask the teams if they can tweak things, it may not be possible but if you don’t make them aware of your concerns, rightly they’ll assume everything is ok. We have found them most helpful, remember though you are just one of probably twenty households visited during their shifts, depending where you are your time slot may occasionally move slightly, one of my care visits is allocated an hour the others are just thirty minutes, everyone else’s will be too so if they over run on an earlier call this snowballs. Care agencies too, whilst the service they supply is excellent I have to say from our perspective their management are the next best thing to useless! Some people who are fully mobile only need one carer to visit them others such as me where a hoist is used to get me in and out of bed need two carers.  The areas they cover seem quite large and some of the staff do not drive (we refer to them as walkers & drivers) so unless on a bus route they have to walk between calls, ‘inconsiderately’ haha we don’t all live next to each other so some of the walks are long and time consuming. Often they (Care agency Management) will put two single walkers mid shift to do a ‘double up’ call. We’ve had occasions where one is here waiting 30 minutes for another, the system seems inefficient, Andy has tackled the agency management more than once, I suspect when he gets time lord help them! Whilst we don’t pay a single penny for these services (thankfully), to overseas readers, you will hear UK systems knocked sometimes but our healthcare system is I believe unrivalled anywhere in the world and its free irrelevant of your status in life, what Is certain is those that commission and pay for these services expect a standard and that standard is above what the management of our care agency seem capable of offering, again Andy has asked I add that those doing the work in the community with patients are faultless, it is purely exceedingly poor management!.

The system may be unrivalled but it doesn’t come without glitches, you will recall the earlier blog on my (in our view) ill thought out discharge plan;  Andy has been keeping himself busy with his crusade, he’d written to the CEO of Arrowe Park Hospital requesting a meeting over how my discharge was handled, more that it was disjointed and well confusing, a meeting has taken place but I’ll let Andy tell you all about it but by a sheer stroke of luck this meeting changed events too for me indirectly.

26^th June it is The Merseyside Women of the Year Awards, Andy has been adamant that I’ll be there but again I’m worrying, how will I get out of the house, how will I get there, the noise, so many people, what if I have a seizure or worse, I can’t sit in our wheel chair it’s so uncomfortable, I’m not sure I want to go….Andy remained determined I’d be there and he went through each of my concerns one by one but I’m not always able to rationalise things these days, I cry as I express my concerns, I want to be at the awards but I also don’t because I’m frightened, really frightened.

 Andy truly went the extra mile; he hired a private ambulance and two paramedics for the day, now I’m now worrying about how much it cost him, this won’t be cheap, I don’t want him wasting his money! We still had a problem, a major problem, we needed a wheelchair, the one I previously had, no matter how good it was at the time it was only comfortable for short journeys and I had my full body usage then, now my left side is weak and my body leans when not supported, If I was to go out ever again the type of chair I would need would need to give me more body support, I’m useless now my left side is paralysed.  Andy in a previous blog mentioned my visit (when in hospital) from a lady called Jill Galvani, Jill was in the meeting with Arrowe Park’s CEO and she had asked about me in the meeting , she also said to Andy if she could help further to let her know. The day after the meeting Andy spent several hours trying to find a suitable wheelchair with no success, he contacted Jill and she arranged for someone to call Andy, ultimately one of the team made contact; there was a wheelchair that the stroke team sometimes used, could Andy go and see if it would be suitable. It turns out it was and the chair was loaned to us, Tony, the head of the department asked Andy why I hadn’t been referred for a chair of this nature now knowing our circumstances , Andy explained that at the time I was being discharged everyone thought I had just days or weeks left, I was after all beyond treatment now and well bluntly I was going home to die. Tony by the spookiest of coincidences is a near neighbour so he kindly delivered the chair to the house and set me up in the chair making a few fine adjustments. On meeting me said he would put in a referral or a chair for me; this would enable me to get out occasionally or just to go sit in the lounge for a change of scenery, this will be incredible if this can happen and all because of a comment in a meeting between Andy & Jill! The main issue Andy & Tony recognise was that although our front door is huge, almost castle like, we had a vestibule to enter and exit and this would make things tricky, tricky but not impossible. Andy had decided the vestibule needed to come down and he would get a company in to create a decking area and ramp. This is major stuff, I’ll be able to go out again, I truly never thought I would be leaving the house, I cried at the time, tears of relief and that people were going that extra mile for me, I’m so truly grateful.

Friday 26^th June and it’s the awards luncheon. I’m so nervous, paramedics or no paramedics, ambulance or no ambulance, I am scared witless. We had previously had to make arrangements with the carers and nurses as I needed to be up early and dressed in my new posh dress bought especially for the occasion plus my syringe driver is re-filled mid-morning, again because we planned it and didn’t just drop it on them last minute everyone was marvellous, I feel like Cinderella going to her ball, I am though scared, very scared, did I mention I’m scared? Hehe… I'm looking and feeling my best though, earlier in the week my lovely and dear friend Jeanette from Barberanne's in Birkenhead had called around to colour my hair, I cried when I saw her, she's such a special friend and she's honest with me, I wanted part of my hair cutting short and dying blue, lol I wanted to make a statement! Jeanette explained I didn't have enough hair on that side yet and she recommended blonde streaks, she was as always right.

Andy didn’t help by disappearing mid-morning supposedly to the bank to get some cash out, the crafty sod had in fact gone to get my newest and dearest friend Hannah from hospital as he’d invited her along to surprise me, and they both sure did! I hadn’t been made privy to what was going on until very last minute, my ticket came free from the organisers but Andy wanted himself, Maureen and some special friends who had helped me get nominated in their different ways to be there so he booked a table for ten of us. Again, not cheap, again I worry but his view on this is it builds memories for his (and others) memory box’s, I still worry about how much this is all costing him though!

The ambulance arrived and Paramedics Tom & Rob expertly got me onto their patient transfer chair and into the Ambulance on a stretcher, I felt so vulnerable though coming out of the house, the chair only has two wheels on it and although the five point harness was snapped in around me I feel scared, I can’t remember the last time I left the house. It was a bit of a struggle leaving the house into the vestibule then I’m turned left to face the outside world but two steps to go down, the sooner the vestibule is gone the better, though it’s more money to spend! Next they loaded my chair and then my hoist into the ambulance along with Maureen, my amazing mum in law, neither Andy nor I would have coped over the last few months without Maureen.. Andy had gone ahead on the pretext of leaving me to the paramedics, the truth is he wanted to get Hannah to the event and greet our other guests before I arrived. We had to make one amazing stop, hehe Andy had called Jeanette and asked if the ambulance called outside Barberanne's could she pop out into the ambulance to spruce my hair up, she's so kind she did exactly that!

 

The ambulance journey was a smooth experience, the Liverpool Crowne Plaza is right opposite the Mersey Tunnel exit on the waterfront so it’s not ten minutes from our front door. Andy had arranged via the event organiser Jean Gadsby for the hotel to accommodate the ambulance arrival and for it to be parked close by the entrance on standby. I have to say Andy’s often used expression of ‘Fail to plan, plan to fail’ is so true, I’m not sure how my amazing man achieves what he does but I know it makes my life a hell of a lot easier.

On arrival Tom & Rob and Andy brought me into the hotel lobby on the stretcher, I

suspect a lot of people were wondering what was going on, someone being stretchered into the hotel. Not far from the function suite was a huge disabled loo, the guys wheeled me in I was followed by the hoist and with now four of us in the room we just about closed the door. Andy is a dab hand at getting me right in the sling and hoist and as soon as I was airborne the stretcher was quickly removed from the area and my chair wheeled underneath me, it’s not the most dignified of situations dangling mid-air with my modesty barely covered by one of my blankets, sadly as I’ve become more ill I’ve had to become accepting of the world and its wife seeing the more private parts of me as I’m cared for.

Me, My Chair & Letty

Myself & June - Hannah lol get off your phone hehe

Well I’m in this oh so comfy chair now and I feel good, still frightened but I’ve already coped with so many of the fears I’d had about today and well I’m here. The organisers had kindly put our table close to the function suite door so being wheeled to the table wasn’t going to inconvenience too many people. I could not have imagined what or who was to greet me, Andy hadn’t given me the full list of friends that he’d invited, I knew he’d invited Maria my half marathon running amazing cousin and her husband Simon but sadly they could not make it. I was stunned to see Hannah! Oh my god, I cried at meeting her again and our other guests, Andy had chosen special friends close to us who were part of the fundraising campaigns that had helped get me nominated. London Marathon runner and friend John Burns & his wife Sarah, my oh so special fundraising friends Louise & Karen from Clatterbridge Cancer Charity, my best friend Letty, Maureen of course, Andy himself and as a special treat to me he’d invited Leon and June from TV’s Gogglebox programme, we’ve not shouted about it but June has enquired privately about me via Andy most days via his ‘twitterating’ since before my last operation, we hadn’t met but the support that also extended to personal notes arriving in the post to small gifts and via their twitter Andy tells me (I don’t do twitter I’m not a twit hehe) they were actively canvassing for votes for me for today’s awards, sadly Leon was having health problems and couldn’t make the event but June kindly did, Leon called June and asked to speak to me, how lovely, June is one of the nicest and kindest people I’ve ever had the pleasure to meet.



Team Julie

Me and the' Clatterbridge Babes' Karen & Louise

The hotel staff were incredible, we had arrived with a shopping trolley full of my bits and pieces, a tray to put on my chair, my special cup, my special spoon, my seizure drugs…. I had a latte in MY cup! Lunch was Sea Bass, it was scrummy, I do love sea bass. Around this time and unknown to most in the room including most on our own table I began to have a seizure, I let Andy know discreetly and with a small dose of lorazepam dropped under my tongue I was soon fine again.

The awards ceremony itself was amazing, I had Andy turn my chair to face the stage and the big screens, I felt so privileged to be here, humbled in fact. Comedienne Pauline Daniels was the compere for the day, this lady is hysterical and she also ‘took no prisoners’ in terms of keeping some of the more boisterous tables under control, I met Pauline at a function for Clatterbridge Cancer Charity at Pollards Inn last December, she’s very kind, she makes light of her own brush with the beast called breast cancer. I think I have the same attitude to this beast as Pauline, you can either let it rule your life and for your life to be miserable or you can say “Do your best mate, but I’m no letting you interfere with my day to day life”. Anyway good job I’m fitted with a catheter and pee bag or I'd have peed myself at some of the things she came out with.

Well lunch over and the awards ceremony began in earnest; this room with around 500 people in it is full of some of the most amazing and unassuming women you would ever imagine, I am humbled and I’m still not sure that I’m worthy of being in the awards alongside them. I knew I was selected to be here for the Woman of the year (public vote) award, I was stunned when Pauline announced well into the proceedings that the nominees for Woman Philanthropist of the Year included fellow Clatterbridge Supporter ‘Bernie Bucket’ & myself! I was stunned as my achievements were read out and Pauline  highlighted that I’d stood out in the pouring rain at the 2013 Open golf championship Hoylake Railway Station with my Clatterbridge Bucket, it was after all ‘just another rainy day’… Bernie I am pleased and relieved to say won the award with me as her runner up, Bernie has raised over £160,000 to date for charities including Clatterbridge and she has fought some amazing personal battles, this woman is to be admired and a worthy winner. The last award of the day was the one the public had been voting for. Michael Halsall of MWH Solicitors and primary sponsor of the event started to read out the results, “In fourth place, with 20% of all of the votes......., Julie Shute, OMG, our table erupted, I truly never expected to get a mention and of twenty six amazing women I’ve made fourth place, I am truly, truly, humbled. The award was won by an amazing lady, Angela Samata, who having lost her husband to suicide set up a charity to support others who lose loved ones under such tragic circumstances, death isn’t fun for any of us but the questions and feeling of loss following a suicide related bereavement must be harrowing, this lady is a queen amongst queens, I salute her for her achievements to date and I wish her well and all the other amazing finalists whose stories can (should) be read at www.merseysidewomenoftheyear.co.uk please take time out to read their amazing achievements. I also need to thank the three amazing ladies who tirelessly and without personal financial benefit put these prestigious awards on year after year, Jean Gadsby, Ellie Kerr & Elaine Owen, you are all truly amazing and thank you, you all deserve an award!

Well the day over, we got a group photo then sadly everyone had to head off though truth be told I was exhausted after almost six hours out of the house and in my comfy chair I really wanted my home and my bed, Tom & Rob my ambulance team of Manone Medical did an amazing job of getting me home, their support during the event was invaluable, nothing was too much trouble, the knowledge they were there as my safety net throughout the day meant at times I almost forgot just how poorly I am. It’s been some day, I know the day Andy was told I’d made the finals by Jean they had a very emotional conversation for I was in hospital and at that point it didn’t look like I was coming out yet I've made it… A second unexpected milestone has been reached, fluff eat your heart out, I’m still not letting you take me yet!