Homeward Bound, Catheters & Cot Sides

 It’s Monday 25^th May, four weeks to the day since Julie was admitted to Arrowe Park Hospital with her blood clot on the lung, it’s been a tough time for her, initially there was no idea what was wrong, then the clot was found, her chemotherapy was suspended then platelet issues, low white blood cell count then the day dawned we knew would come but were dreading, that there was no further ‘credible treatment’ to fight fluff and we were moving into the palliative nursing stages. Throughout it all though with gallons of tears shed Julie has always bounced back and remains positive,

 

cheerful and she still has the desire to laugh at ‘death’ by enjoying herself in whatever way she can, last blog showed the smiley face on her toe courtesy of the amazing ward 26 team, and yesterday lol the face took on ‘lipstick’..

 

 If you’re ever in hospital I’d ask you to remember that Nurses are human so be nice to them, none of us like being shouted at or demanded of, they’re Nurses not skivvies nor servants, they’re highly trained professionals and they’re there to make you comfortable and hopefully aid your speedy recovery so they can get you home. If things aren’t right then fine raise your concerns but ask for a discreet word and have it away from the patient’s bedside where just you and the nurse can hear each other, you are both entitled to that level of dignity and privacy & remain calm also, please not as we occasionally heard, please do not swear at them. We always find ‘working with the team’ pays dividends. A good example is why start ringing your buzzer when you can probably reach for that cup or plan your next trip to the loo and not wait until you are so desperate. Julie would often say to the nurses, “When you’ve finished handing out the lunches could you please sort me out the commode?” Not rocket science but amazing how many seem to appreciate this and I never thought I’d say it but it seems it’s the elder generation that have suddenly lost their manners….

So back to Monday and I’ve headed to the ward early as we don’t have a precise discharge time, things have to be done, a supply of drugs to go home with, final checks, in Julie’s case a catheter fitted and then there is arranging an ambulance to bring her home, amazing and despite my previous blogs criticisms of the discharge process this worked perfectly with Jan from the discharge team informing Julie & myself we were ‘good to go’ and the Ward 26 team were so slick in making everything happen and keeping us informed. So many Nurses were coming to see Julie giving her hugs, lol I got in on the act too, felt rather spoilt by all the attention but there is a sincere warmth and friendship with this team now, such was the bond tears were falling and it was emotional all round. Julie’s ‘partner in crime’ Hannah, she’s clearly been hit quite hard knowing Julie is ‘deserting her’ so much so she’s heading down to the Cafeteria and Hospital front with Mum & Chris and I’ve agreed to let them know when the ambulance crew are collecting Julie and where the ambulance will be located, neither of the girls want to get emotional on the ward bless them.  I’ve made a couple of trips to the car with Julie’s personal belongings and on hitting the ward there is suddenly a flurry of activity, more Nurses appear “Julie the ambulance crew are here for you”, more hugs, Kisses all around, Nurse Kim W is determined to see Julie right down to the ambulance, such is the bond she’d have come home with us too if she could. It’s fair to say it was a very emotional time as we left the ward. I’d already messaged Hannah for Julie wasn’t being discharged via the front door there is a discharge suite at the rear of the hospital. We got down there and no sign of Hannah, Andrea & Chris, I’m under the threat of death if Julie leaves the hospital without them saying goodbye. The ambulance crew were brilliant and said they’d hang on for a few minutes and they had to secure Julie and her stretcher. Kim & I legged it around the front of the hospital, no sign of H,A & C! I ran into the front of

Hannah  & Julie in the ambulance

the hospital and they were in the coffee shop, being an overweight out of condition asthmatic I was like a wheezing knackered old greyhound as I barked out “quick Julie’s ambulance was around the back and ready to leave. ‘Thankfully’ Hannah was in her wheelchair and I think Chris and Andrea were considering entering the 100 metre dash in the next Olympics, lol I jumped in my close by car and drove around. I got there and Hannah was being wheeled into the back of the ambulance for a most poignant goodbye, these two are now friends forever however long forever will be… Andrea & I hugged, Chris & I did the bloke thing and as Hannah exited the ambulance I bent down to hug her, I felt her tears on my cheek I’m not sure if she felt mine; it’s daft for it’s just the moment, we will all meet again but this day is charged with emotions.. I followed the ambulance calling my Mum Maureen (yes I have a voice activated hands free kit) who is patiently waiting at home for us.

I’d already warned the ambulance crew that no way would they get a stretcher through our door; there are two steps into a small vestibule and then a right hand turn with two steps through our huge front door. I suggested they’d need one of their special chairs. On arriving I bought them into the house so they could see their route, the dining room cum Julie’s new bedroom had been cleared, I’d removed two sections out of our huge (12 seater) dining table and relocated it. The guys were comfortable with it and within minutes Julie was in bed. I called the community Nurse team to let them know Julie was home, they were on their way.  Disaster time! Julie is ‘panicking’ at the lack of cot sides on the bed, there are large triangular wedges that Velcro to the mattress to prevent patients rolling out of bed’, I’d previously been told that cot sides are now banned in community nursing, comes down apparently to health & safety as a patient had caught their head in between the bars and strangled themselves. It was clear this was something Julie was going to panic about, she has become quite dependent on everything in the hospital and with her condition deteriorating and her mild agitation even with her drugs she is still severely fretting about this, I spoke to the nursing team about it and the only solution they could come up with was moving Julie’s bed out of the window against a wall, despite the room being around 20 feet long including the bay, no section of wall is long enough to accommodate the bed, besides that Julie wants to be in the window, there were one or two other concerns that Julie was ‘mithering’ about, one of the Nurses (Jan I think, forgive me if I’m wrong I’ve seen so many new faces in the last five days) & myself said to Julie that its early days, we need to let things  ‘bed in’ and see how she copes and we could make changes as necessary but right now, nothing is that important it needs fretting over, well except the cot sides and this is an issue. I’ll say at this point again, I cannot fault a single Nurse, Sister, Carer or the professional visitors I’ll tell you more about shortly, I truly cannot fault them they are amazing but again the system seems to be the issue, its rigid almost black or white, well we shall see… I was also prepared to leave it twenty four hours to see how things went, despite what some may think I am ‘considered’ I do not act on impulse. Ooooh it took a few minutes to register but the newly painted window frames went down well but hahaha ‘Mrs Bouquet’ had picked up on the paint that had run on to the glass or had sneaked under the masking tape, it’s too wet to scrape off yet.  Julie is delighted that the black paint has gone!

It’s fast apparent too that it’s going to be hard work looking after Julie, hard only in the aspect of getting in to the routine. It’s worth any sacrifice though to have my wonderful wife back in the house even if we can no longer share our bed, at least we can still hug and cuddle to our convenience. We won’t leave Julie alone now, at night someone will be sleeping in the room with her now, tonight it will be me! Julie had just treated herself to an all singing all dancing chair that has two electric motors on it, it tilts it raises, I swear if it had a gearbox and steering wheel you could ride it in to town! This will be my new bed tonight. We are getting three community nurse visits a day, we are so grateful for the service and these truly amazing people/team.

Night time came and we settled down for the night, it’s so good to have my princess home, I watch her from my ‘bed’ as she drifts off to sleep, I follow suit, it seems though I have gathered a sixth sense of being able to sleep but also hear every time Julie moves, I reckon every mum reading this is saying “Yep, we know what you mean”…

Tuesday morning & by six we were both awake and I was making tea for the lady of the Manor not long followed by breakfast, porridge.. yukkk even with Manuka honey and blueberries.  I had to go in to work today, I’d booked the rest of the week off, we were meant to be at dear friends Andrew & Beci’s wedding in County Durham which was spreading over two days, we’d long accepted Julie couldn’t go but she was insisting I went on my own. I hadn’t made my mind up and our hotel room was still reserved but with Julie’s fretting and just being home I was struggling, as  I drove in to work I realised I’d have to sacrifice attending the wedding despite desperately wanting to be there. Reluctantly I cancelled the hotel room and then called Vince, Andrew’s dad and broke the news to him.

Work as you would expect was taken up with a lot of enquiries about Julie, I’m touched by the concern, late in the day I saw my boss who expressed surprise I was in but the last week of the month is my busiest and being off the rest of the week I needed to put in a week’s worth of work in a day, I worked slightly beyond ‘normal hours’ but I’ve achieved what I needed to, I’d even had time to check out cot sides; the saying is #WhatJulieWantsJulieGets, I value the work that the nursing team are doing but Julie is stressing about her cot sides, she deserves better and with the above mantra, well I don’t care who it pees off Julie is getting them, I called the company and they’re ordered for next day delivery. I got home and our dear friend June (aka Scousebabe) who had volunteered for ‘Julie sitting on Wednesday & Thursday had arrived, she was staying over for tonight & Wednesday, she and my mum were entertaining Julie, then friends Richard & Sharon from the Isle of Man and their 3 children arrived, they're heading to France & as the Isle of Man Ferry comes in to Liverpool/Birkenhead they kindly called in  I was so thrilled to see all of them. I slept on the reclining chair again with Julie..

Wednesday arrived and we are into something of a routine now. Early on the cot sides arrived, Julie although she wants them up is fretting about what the nurses will say to the point of asking “What if they stop coming because of them”, I reassured her, I told her they will be fitted and if necessary I’ll remove them for every community nurse visit and then drop them back on the bed on their departure, I assured her the nurses were too committed to a care programme and they would not stop coming to her, to you and me this is a very irrational thought process but we aren’t stuck in a bed 23/7, extremely poorly and a beast called fluff now marching on unchecked.

 We’d been referred to a palliative care support team called Hospice at Home, two of the team came out to see us but whilst here the community nurses arrived and of course they take priority, the two nurses from Hospice at home and myself retired to the lounge to continue our chat. The team can supply support to the carer(s) in the home by supplying a dedicated team that sit with the patient to allow the carers to go out, go rest, whatever you want to do for a couple of times a week mornings or afternoons, this makes an amazing difference to the carer’s ability to conserve their energy and lol remain sane, let me tell you this journey is stressful in so many ways so any help we are being offered I/we are accepting. The Hospice at home (HAH) team also enquired if we would welcome ‘overnight sits’, they arrange this via The Marie Curie Nurses, this will make a big difference to my ability to do my job without falling asleep at my desk lol, that feeling has hit me many times over the last few months, I remain exhausted but the requirement to ensure Julie is cared for overrides my need for sleep, I’ll be able to sleep to my heart’s content in the near future…. Later in the day I had a call saying that Marie Curie would support us with up to four night visits per week, the Hospice at home team added they would do their best to fill the other three nights as Julie’s condition deteriorates, as I write this on Saturday afternoon we’ve already experienced two night sits and tonight is a third, the teams around us are amazing and  obviously see the urgency to arrange and start supplying this level of support and yes, I will remain eternally grateful for the support.

Julie told me after the HAH team left that the nurses had asked Julie if the long box with the image of the cots sides on asked “are those the cot sides Andy has ordered?” Julie answered yes, nothing else was said but Julie noted the less than impressed look on their faces. We had lunch and yes I fitted the cot sides. late afternoon and the

 

second Nursing team arrived, I explained about the cot sides, I told them I didn’t expect them to use/handle them and if they were a problem to them, well I’d drop them down or out the brackets and refit them after they left but empathised they were staying in situ, this team had no issue with them whatsoever… The evening shift and the same again, this team had no issue with them; I have to say it’s a relief; I do not want to be in conflict with the teams visiting and professionally caring for Julie.

Later that night and our first night sit Nurse is here, Lynn called around 9pm to confirm her visit and was planning on arriving at 10pm and staying until 7a.m. I suggested she come at 10.45 pm so I could show her round the house as Julie currently doesn’t settle down to sleep until around 11pm. Upon her arrival I showed Lynn around and explained whatever she wanted food or drink wise to help herself, its least we can do is offer refreshments to these teams. I headed to bed and I can tell you I went out quicker than a light. I’d said I’d be up for 06.30 to facilitate a swift departure.

Early Thursday morning and Lynn was calling me, I shook my head and got out of bed in a panic, Julie unusually needed the commode but as that involves the hoist Lynn was looking for the slipper bed pan, these aren’t the most dignified of things and well, they lack dignity although in an emergency they are useful. Lynn and I discussed the hoist, as a former hospital Nurse she had experience of them, I’d previously been shown how to use it so we decided we would hoist Julie out of her bed and on to her commode. We worked as a great team the three of us and within two minutes Julie was sited on the commode, she told us we were as efficient as the nurses, high praise indeed, we left Julie to have her privacy until she called us and then after ensuring she was refreshed and cream applied to an area on in her groin that was sore bless her, again we returned her to the comfort of her bed and Lynn was still out of the door by 07.00. The princess deserved her first cup of tea of the day.

Mid-morning Jan from the community nurse team called to discuss a few points about Julie’s care plan and to check how we were getting on and how I felt Julie was coping and about the support for me, we are so grateful. I think I am currently viewed with a degree of trepidation, the team know I was not happy about the discharge debacle and they know I’ve dug my heels in over the cot sides, I can understand their wariness but I am not the ogre I am probably coming over as, the reality is I’ll bend over backwards to work with them and anyone else BUT Julie’s wishes come first and so long as I consider what we are asking for as reasonable then I feel duty bound to ensure Julie has whatever she wants in her remaining days, if that offends anyone then sorry, that’s just going to be tough. I took the opportunity of the call to discuss the cot sides with Jan for it was her who had explained they are not in the community now and why, as she hadn’t seen them though I expect it had been reported back that I’d installed them I explained as above I’d remove them if required so the team did not have to handle them but they were staying on. She was lovely, she explained hers and the team’s concerns on the basis that if Julie had one of her infamous seizures she could get her left arm or foot caught in them and cause herself injury but she confirmed she had discussed this with Julie as part of a risk assessment and Julie wanted them so they (the nurses) were fine with them as we understood the risks. The reality is the team have yet to see Julie have a seizure also whilst I accept they could happen again that a) as Julie is all but left side paralysed now the seizures are only presenting themselves in her left shoulder, her neck and head, b) someone is in the room with Julie 24/7 and c) Julie sees them as a comfort and added security if she were to have a seizure, her fear of falling out of bed is too great to ignore. It seems the potential storm has blown over. We have to be guided by healthcare professionals but where we know our family and loved ones better and we are aware of the risks well my view is and I will always insist on things being done our way. I know Julie better than anyone, I can see a certain look I know something is wrong, I am not going to do or allow anything that jeopardies the love of my life’s remaining time with me/us, I’ll add again my battles are against a system not the excellent, amazing people who work within the framework.

It’s Friday morning and things are a little ‘testy’ Julie is fretting about things that normally she wouldn’t but even a few things on the dining room table are becoming an issue, she thinks they’re in the way of the soon to arrive nurses who have to mix up Julie’s controlled drug sedative, despite there being only two of them and our much reduced in size dining room table  which can still seat six these things are still an issue, these are small things that suddenly become much bigger, this is funny writing it now but at the time it wasn’t, Julie’s frustration was at the point that she snapped at me and the words ‘getting divorced’ and ‘Well I’ll go and live in the shed then’ came out of Julie in pure frustration (lol we don't have a shed…), I can understand her anger but it’s no fun being on the receiving end of it  and jumping forwards a day I had to say as more conflict ensued, “You are not going to get an argument out of me over this” lol Julie disagreed she thought an argument would be a good idea so I ended up walking away to calm things down. These are very testing times for us both…

The hospice at home team are coming to spend time with Julie this afternoon, ha, we’re commandeering everyone in to voting for Julie in the Merseyside Women of The Year Awards, to be honest once they read just part of the blog they’re thrilled to vote for her. An In blog plea… Please, Please #VoteJulieShute all you do is go to www.merseysidewomenoftheyear.co.uk/vote If you are on twitter please use the hash tags  #VoteJulieShute and #MWOTY not only vote for Julie but raise the profile of this fantastic event and its organising  team, the judges and all sponsors especially Michael W Halsall Solicitors who are sponsoring the only public vote award.. There are some amazing women in the final; you’ll be less than surprised that I’ll add but none so amazing as my battling wife.

On arrival of the hospice team my mother & I popped out, we had the hospital’s syringe driver, the community nurses had replaced it with one of their own, these things are expensive so I took it back to the ward (26) where I was greeted with yet more hugs and everyone wanted to know how Julie was, some of the gang wanted

me to take a picture to show to Julie, happy to oblige, here it is, a selection of the Ward 26 ‘Angels’ we also needed to get some shopping from Sainsbury’s and as Julie loves watching the wild birds in our small front garden, I popped in to Homebase; we’ve already got a feeding station plus ‘fat blocks’ (not blokes) dangling from the small trees, the view immediately in front of Julie is quite barren so I thought if I get a 10ft length of timber and a couple of hanging basket brackets and attached the 2 by 2 to the wall she would have a great view of the bird equivalent to a Michelin star restaurant. Bizarrely for an urban garden we’ve had great tits, blue tits, sparrows, doves, Robins (Julie’s favourite) Blackbirds, the odd pigeon, the occasional unwanted Magpie and we’ve had two Woodpeckers in the garden too. Bird Watch a la Birkenhead.  So after a quick ride out, out came the drill, rawlplugs, screw driver and hammer and 30 minutes later a new bird feeding station is up and open for business.

Tonight we have a lovely lady called Cathy as our Marie Curie ‘Julie Sitter’, she’s lovely, a slight glitch tonight, the community nurses are running late, normally they’re here around 9pm, the clock ticks on and at midnight with Julie fretting as she needs to be hoisted out of bed on to the commode, I called the out of hours service and explained our concern and hoped Julie hadn’t been forgotten, about five minutes later we had a call saying they were running late but would be with us shortly, much to Julie’s relief they were, once Julie was sorted and settled this was around one a.m. I headed to bed; my head barely touched the pillow and I was asleep.

Saturday, I’m downstairs for six forty, Julie is awake and ready for her first cuppa,  Cathy sets off for her own bed with our sincerest thanks, I’d had just over five hours unbroken sleep which is more than most nights in the last 21 months. The time seems to just speed by, its soon lunch time and Julie thankfully has her appetite back, she often raves about my cheese omelettes, lord knows why but today I made her in fact all of us cheese omelettes, I sautéed some Jersey Royals and we had sweetcorn too. As I was mid-way through Julie’s fondest friend Letty aka Olive arrived, she’s been trying to visit for a few weeks but a combination of work or illness has (Sensibly) kept her away. Julie tucked in to her meal and announced she could have eaten two of them so I put her to the test and passed her my plate which had around 40% of my meal left, Julie made short work of that too.

I keep saying #WhatJulieWantsJulieGets the latest example is she loves a malted drink from her childhood memory bank called Milo, I’ve previously bought it in Tesco in Horwich but it’s not sold in our Tesco I discovered on a recent hunt for it. Its popular in the southern hemisphere also in the Caribbean, I had a feeling that the huge Tesco in Toxteth would stock it, they did so one for now lol happy Julie.

Julie had been mentioning to the district (community?) Nurses that she felt when in the hoist/On the commode that her catheter was being bypassed she also explained she had an ache in her groin, the mid-afternoon team felt she may have an infection but as getting a urine test done at the weekend was a no go they would keep an eye on things, she may need antibiotics. When the 9pm team arrived the lead nurse said he’d check the urine with a stick test, his opinion was that there was an infection and he’d get the out of hours GP service to call us, by the time they’d left and the GP called it was pushing 10.45. I chatted with the Dr acting as a go between for her and Julie, she too felt Julie had an infection and luckily they had a supply of antibiotics at the out of hours centre at APH, I drove up to collect them lol I was at the reception desk before the drugs were. Anyway pushing 11.30 I was walking back to the car when I stumbled across Hannah & her Nurse, Steph, ‘getting some fresh air’ we obviously needed to chat, they were surprised to see me and feared Julie was back in A&E, I explained all. I was home in five minutes and Julie had her first antibiotic, I spent 15 mins writing the blog then exhausted kissed Julie goodnight and hit my bed & pillow. Around 01.00 Cathy called me , there was a problem with Julie, her bed was soaking and smelling none too pleasant, It’s clear the catheter has been bypassed bless her, I called the emergency out of hours number and was informed a district nurse team would be with us soon and they’d change the catheter. I suppose it was around forty minutes after the original call and the team were here and got straight into sorting Julie out, Cathy was standing by with a bowl of water, flannel and soap & glory, it’s a pleasure to witness these teams at work, the care & compassion is amazing… Cathy had even given Julie a bit of a foot pamper!

So I think I got back to bed around 2.15 – 2.30 and I have to be up for around 06.45 as Cathy leaves at 7.00. I made Julie a cuppa and snuggled up under a faux fur throw on the recliner, I would catch more Zzzzzs.. It’s a good job ‘sleep is for wimps’ hahaha, more like it’s a good job today is Sunday and the plan is to cook Sunday lunch and do bugger all except rest and run round after my Princess.

Finally… You may not have heard but Julie’s blog burst through the 35,000 views mark yesterday, so 35,000 thank you’s to each and every one of you. The most read blog to date with over 1,100 views is the #VoteJulieShute I’m hoping each view equals a vote, please ask your friends, family, work colleagues to vote, vote, vote, we have until 6^th June to vote. And Thank you.

 

 

 

 

 

 

 

 

 

 

Highs & Lows and Painted Toes

 

 Well the week stumbles on in the continuing lack of communication, lack of understanding way it Ended last week.

Forgive me for this ‘rant’ but I hope on reading you will be as astonished as me by these events. Oh there is some humour later on too and I don’t think you’ll need tissues for this one..

Late Monday afternoon a lady called Jan who is part of the discharge team calls me explaining she was responsible for ordering all of the equipment, she had spoken to Julie and had agreed a list of items with her that would need to be delivered to our house which included; A hospital bed, a special mattress that fills with air and ripples, it keeps soreness to a minimum and helps prevent bed sores, (crucial given Julie is bed bound now). Also ordered was a commode and a couple of other smallish items. Jan said she would ask the community team that delivers equipment to get in contact to arrange delivery asap as this was a fast track discharge. I informed her different, it would depend on Julie’s general health being ‘good’ (take the word 'good' in context here) and in my view that wouldn’t be until later this week at the earliest.

Jan mentioned she also notifies the community Nurse team that Julie is being discharged also liaises with the Palliative care team (Macmillan Nurses) situated in the office next to her. A team called Hospice at home too.

On pushing the matter it appears the discharge team’s responsibility ends the minute they inform every agency involved. I expressed to Jan that I felt the system is broken, that it is poorly thought out, no one takes responsibility for anything and everyone assumes once a request to an agency is made well that’s fine.. NO IT E*FFING WELL IS NOT FINE!  Someone needs to co-ordinate a discharge and that means someone knowing that what is being requested IS being actioned! AND What everyone seems to fail to recognise in this process there is ONE IMPORTANT PERSON that MUST be kept in the loop (in this case ME), there is a key phrase in the NHS ‘Stakeholder’, well this particular Stakeholder feels the system is wrong, and here is why……

The discharge is dependent on it being possible for the family to be able to accept the patient, in this case Julie, back into the family home… Would it not be a great idea to start the process something like this: “Hi Andy, this is the discharge team, we hope to discharge Julie on (for example purposes only)  Wednesday, are you able to accommodate that?... Is that so hard? What though if it isn’t? Well then it’s easy to agree a date and then inform the other agencies and then in theory if everything could have been available for say the Wednesday to achieve the Friday would be simple would it not? I fully appreciate discharges need to normally be swift, no one wants to be tying up a hospital bed but all the more reason to get this right first time every time.

To Hospital CEO's, administrators, to discharge teams, to ward staff, to all the other agencies I say your system MUST change! MUST! I informed Jan and I’ve informed others whom I have spoken to during this very frustrating week that I am going to make it my mission in life to change things! Let’s face it not everyone is like me, how many people are just railroaded into accepting second best or suffer a lack of communication and end up with a poor experience. The crazy thing is being project managed or co-ordinated WILL save costs and will improve the overall patient (Stakeholder) experience. What is truly frustrating is almost every agency I spoke to recognises the system is flawed and agree with my assessment! SO stop talking about it and accepting it and make Management raise their game!!! It is ESSENTIAL especially in palliative care cases that this transition is handled and applied in a stress free manner, this is certainly not my experience!

You’ll gather from the above that whilst I am truly impressed with every team especially the ward 26 team I am less than impressed with ‘the system’, I hope the CEO of WUHT Is reading this, I want a meeting with you, this is NOT GOING AWAY, I WILL NOT ALLOW IT TO GO AWAY! Trust me, I am on a mission here, people deserve better and certainly a smooth discharge no matter the reason for being in hospital!

Back to the specifics of our case… Having initially spoken with Jan and our call had ended I stared at the list, something is missing….. the penny dropped,  The hoist… There was no hoist on the list. I tried to call Jan back but as she had left no contact details I tried the number she called me on, HA! you cannot call back in on this number! I eventually tracked her down but what a waste of my valuable time!!I I explained to Jan there was no hoist on the list, despite having previously told me she was responsible for ordering ALL the equipment Julie needed at home it now seems that didn’t include the hoist, that would be ‘OT’..

Still Monday, it was a mixed day for Julie, Emma & Bob drove over to see her as you can imagine it was very emotional, there are so many tears being shed these days… Also a dear friend of Julie’s Tara drove across country to see the lady herself & Julie's dear friend & former neighbour came over with Emma & Bob. By the time I got on the ward, Julie was very upbeat this despite my tears being added to the day’s as Julie shared some of the conversations she had with Emma and Bob….But she was lively, she’s struck up a tremendous friendship with a fellow long stayer, Hannah has been in a week longer than Julie, she’s a lot younger than Julie but age is just  a number for these comrades in hand, we’ve also bonded with Hannah’s family including Mum Andrea and Hannah’s boyfriend Chris.. Well J & H can brighten anyone’s day when they’re bouncing off each other. On my way in I'd had a text off Julie, "Bring me in some KFC" wowsa I thought, the lady must be feeling better though bizarrely she told me years ago she last ate KFC well before she met me on a drunken night out with her brother Howard consuming a family bucket between them on a longish late night walk from Cleethorpes and its night clubs back to Julie's home in Grimsby, but lol the saying now is #WhatJulieWantsJulieGets so KFC it was. I'd swapped messages about Julie with Viv off Googlebox around this time, Viv kindly asking how Julie was, imagine my surprise as I waited for the hospital lift doors to open and there was Viv & daughter Eve! We chuckled discussing my bag/bucket of KFC again they sent their love. Needless to say Julie was happy & so were some of the staff who we shared the remaining pieces with.

 Tuesday morning and to typify what I am talking about; I receive a call around 8.30 from the community store team “Mr Shute, we’ve had an order come through for equipment for your wife, can we deliver it?” Me – “When?”, “Well this morning”… The assumption is I am sat on my backside at home waiting for everything to happen to everyone else’s convenience… WRONG!! I am 40 miles away on my way in to my office, I work!!!! I explained this.. We’ve been told this is for a fast track discharge” – The system has now failed….  “Have you got a neighbour who can let us in?” NO I HAVE NOT NOR WOULD I ALLOW THAT!!! It is ME that is going to have to deal in the main with looking after Julie; I need to be there to ensure the right equipment is supplied…  Besides that I informed the lady, this is not going to be a fast track discharge even were I at home. I agreed to be at home Wednesday morning to accept the delivery.. 

Early afternoon two interesting events, 1) Julie called me; a Doctor has confirmed she is “NOT CLINICALLY WELL enough to be discharged!” I hate to be smug but I’ve been saying this since the palliative team meeting Friday!  Secondly;  I received a call from a community Nurse called Terry, a lovely gentleman and most helpful but he is calling me to say “We’ve had a message from the discharge team at Arrowe Park about Julie being discharged apparently it was to be a fast track discharge  but little other information, we wondered if you knew what was going on?” Does anyone see the need to the project manager/co-ordinator yet?......

I explained to Terry  the equipment was being delivered tomorrow morning (Wednesday) I explain what the kit comprised. I also added that despite everyone wanting this to be a fast track discharge it was NOT going to be,  A ward Dr had earlier confirmed Julie is not clinically fit to discharge, Julie was having platelet issues still and had Neutropenia, her white blood cell count was low indicating an infection and she was on antibiotics, it was my view that unless I was convinced differently that Julie wasn’t going to be discharged before Friday or even early next week… We agreed to liaise with each other, I’ll project manage this myself now!

Late afternoon a lady called Melissa called me from the Occupational therapy team called; “Andy, I’ve seen Julie, I have ordered a hoist & harness for Julie and I’ve called the community store team and have managed to get it added to the equipment order being delivered in the morning”.. At last, someone is thinking! Shame no one was listening!

Tuesday evening Julie is still quite bright, she had asked me to get curtains from Ikea, I had them in the car, Phil, Julie’s brother and I will sort them out tonight, the curtain rail needs re-siting and we shopped for sheets and a quilt for the hospital bed. We left Phil & I had a busy night ahead, it would be nice for once to come home sit down, grab a glass of wine and chill, lol like that’s going to happen, tonight its gone midnight.

Wednesday morning, a knock at the door, it’s the hoist! “Where’s the bed and other items?” a polite “I don’t know this is all we were given”.. 30 minutes later delivery vehicle number two arrives with all the kit…

Melissa had said she wanted to come out and checkout the hoist and to give me a basic understanding of how it worked, well I wanted a basic idea of how it worked. Melissa called and 30 minutes later she was with me, she took the harness to ensure it was the right fit for Julie. I called and left a message for Terry of the community Nurse team to update him and confirm the equipment is all in place. Julie's hair has been growing at a pace and its bugging her, she also wants to go in to dare to be different mode by having the right (thinner side) kept really short certainly shorter than the rest. Jeanette our superstar friend and Julie's hairdresser, confidante, fellow laughter maker after receiving a call from Julie is heading for the ward armed with scissors. Even at this late stage, fashion and appearance matters to my darling wife.

Thursday and Julie calls me “They are going to discharge me tomorrow” Julie is still on antibiotics, I am not convinced and… this all assumes I am going to be at home and don’t have commitments. I called the Ward Manager (Much prefer the title ‘Sister’) Emma Hare, I expressed my concerns on Julie’s health and whether she was fit for discharge, I suggested that “In this litigious day & age to discharge a patient such as Julie especially as she is as poorly as she is that to risk her relapsing & having to be re-admitted within the week was foolhardy at best” I also raised the lack of communication with a key stakeholder (me) and pointed out (again) that I am not sat on my ass at home waiting for things to happen that I know nothing about, in serious jest I added “Emma, something no one has considered in all of this, Julie has no keys to get in to the house with” we both laughed, it was a serious point made with humour. IF I’m not there Julie isn’t going to be able to be discharged, If i'm not consulted and kept in the loop... Julie isn't going to be discharged… Again, to the much higher up the chain executive, wake up, consult the key stakeholders! Emma would speak to the Doctors and someone would speak to Julie.. I asked Emma if she knew of the blog, she didn’t, I suggested she might want to read “The Rollercoaster is out of control” I also explained Julie reaching the finals of Merseyside Woman of the Year, cheekily I asked could I put an A4 poster or two up in the ward, Emma readily agreed.

When I got on to the ward Julie and a couple of the Nurses were chatting, oooh excitement, it turns out Julie had been visited by Sister Emma & ‘hospital royalty’ a lady called Jill Galvani who just happens to be Director of Nursing & Midwifery, it seems the praising of Emma and her amazing team on Ward 26 had reached ‘the top floor’. Jill wondered if the hospital could use the blog content to boost staff morale and to educate, Julie confirmed we are happy for anything published in the blog to be used. Anything that spreads the word & further recognises the excellent work Emma & her Ward 26 team do can only be good. The staff nurse on duty confirmed there was no urgency to discharge Julie on Friday and I suggested Monday or if the Bank Holiday caused problems then Tuesday, there is no problem with a Monday discharge, soooo Monday it is!

Friday mid-afternoon I’m on my way to hospital to see Julie and the carphone rings. It’s the ward Doctor, Dr Gibbons. I informed him I am going to be with him in ten minutes and we agreed to meet then. The Doctor confirms Julie is well enough to be discharged on Monday, that she is finishing her course of antibiotics tonight, her platelets are up and her white blood cells are increasing too so things are encouraging. Dr Gibbons following discussions with the Palliative team wanted to be sure I knew ‘precisely where we were with Julie’, I think most of you could answer that now, yes both Julie & myself are fully aware of ‘where we are’, I won’t state the obvious as to why Julie is returning home but I am finally comfortable that Julie is well enough to come home & its where she should be. The ward team are nearly all voting for Julie in MWOTHY competition, I caught one nurse on my way out reading Julie’s blog, he confessed to almost being in tears, I said “you’ve not read them all yet then” lol..

So it’s taken a week, a week of mainly frustrations all of which could have been avoided with a little bit of planning and……… coordinating!!!

On my way home from work on Friday I’m thinking what we need to do for Julie’s homecoming, shopping etc. Then I suddenly thought, our bay window is painted black paint, Julie’s bed is going to be in the bay, she’s probably going to feel like she’s already at the funeral directors! I need to change this, so I called in to a local decorator’s merchants and had some paint made up that would brighten the window frame up for her. If only I’d thought about this when Phil was here lol, he wanted to help, he did but lol I’m still cursing I hadn’t considered this before but the job will be done and, I want it to be a surprise for ‘her ladyship’.

Before

After
 

Saturday and they’ve closed down Ward 26! They’ve moved all patients to the adjacent Ward 27 which is usually kept mothballed for emergency situations & is now  being used so that 26 can be locked down and fumigated to kill off the Norovirus bug. This was the ideal time to do this as the ward was infected whilst patients who were fit could be discharged no new patients were allowed on so numbers had diminished to just nine patients including the now ‘double trouble’ Julie & Hannah,  lol worst still Hannah & Julie were  now next to each other and Hannah could struggle in to her wheelchair to get even closer lol! I walked on to the ward with my Mum bearing bags of iced lollies for this amazing team, Nurse Kim W almost mugged me for them hahaha, as you can imagine I was welcomed warmly then panic set in, was there was a freezer on the ward, lol, there was. The ward staff are full of

fun too so it’s mischief time, Julie has had a face drawn on her big toe hahaha, it’s the little things is life…  It’s lovely to see a smile on Julie’s face, as we keep saying, dying doesn’t need to be a sad affair, it’s a time to make the most of what time you have left..

VOTE JULIE SHUTE - WE NEED YOUR HELP (please)

          Please note Voting for this award is now closed

All,



I previously mentioned I nominated Julie for this year's Merseyside Woman of the Year Competition. (I've just discovered some of you lovely people also submitted nominations too, so thank you, 'we' did it)

Julie has made the competition FINAL and will either win a category or be runner up in one.

The overall winner of Merseyside Woman of The Year is decided by a (Free)  public vote.

I'd really welcome your support by taking the time to vote. Click on the link scroll down until you see Julie the voting list I think is on the right, if not click on Julie's name and it will be on the right. It looks like one vote per person/device.

www.merseysidewomenoftheyear.co.uk/vote/669-julie-shute


The brief overview of Julie on the #MWOT Website truly doesn't do her full justice so please just read a sample of her blogs to get a flavour of my amazing wife.

What an amazing thing this would be given the work Julie has put in and the fight she has put up against 'fluff'... . Could you please share this & ask friends & family to vote too.

Thank you so much ... A&J xxxx

The Rollercoaster Is Out Of Control

Well the nightmare continues.. BTW, I think all future blogs are coming from me (Andy) assume they are unless I state differently.

Platelet Transfusion

 Tuesday evening Julie tells me a Haematologist has just visited her, he has concerns. He was still on the ward so I spoke to him. It seems he's majorly concerned at Julie's platelet levels, he says they're critically low at 40, I asked "What's Normal?" 140 came the reply! "We need to do a platelet transfusion", I asked when, the response was "Now, I've just ordered the platelets" He then went on to explain that platelets are the sticky little critters that thicken our blood and as Julie still has a large blood clot, to insert them without further protective measures this could be dangerous, "We need to insert a filter into your main chest vein that leads to the heart, we go in through making an incision in your groin and then feeding the filter in that way, it will catch any clots" I asked "When do you want to do this?" Answer, As soon as the platelet transfusion is completed! Wow, this team are moving quickly. Julie was concerned and wanted to know if they'd put her under general anaesthetic for the procedure, they use just a local one but they'll monitor Julie throughout, her concern is she had not long had a seizure and pain causes seizures.... In minutes the platelets are with her collected by one of the nursing team, Noel & after thorough cross checking all details with Nurse Liz leading the cross check the transfusion begins. They 'rushed' these things into her, it took 30 minutes and by then a porter was waiting to take Julie down for her procedure,  Liz who Julie has come to trust when she has had her seizures,  reassures Julie that she is going down with her and will stay with her throughout. She was away about 90 minutes. When she came back & to demonstrate how the little things are getting to Julie she said "That drug never relaxed me", I said but did you feel the cut and the filter being inserted?", "No but it never relaxed me", ok so the procedure went to plan, you had no pain so is it really an issue? "No but it never relaxed me"... The only glitch was it took 20 minutes of applying pressure to the entry point to stop the bleeding, Julie's blood is so thin and the platelets are not for working yet! The net result is yet another big bruise bless her.

 It’s Wednesday I’m still struggling for sleep, I’m in my office by 07.00 crazy maybe but my employers are being extremely generous and tolerant of my coming & going and well I hope this demonstrates it’s not all take plus I probably get more done in the hours before the rest of the team arrive for once in a lot want to ask how Julie is and I’ve amazing customers many of whom are or I now consider dear friends from Scotland down to the South Coast & across Europe too, it all takes time to update everyone.

Around noon Julie called me! It’s lovely to see her number appear on my telephone screen.  She’s had a visit from an Oncologist & a Nurse, “They say they’ll be about for another two hours if you want to meet with them” I do and I will, I’m already closing down my PC and I’m on my way.

On getting to the ward, it’s on lockdown, Norovirus is still hanging around but the team are being amazing with me and I’m in unchallenged even three or four ‘Hi Andy’.. Julie is fast asleep, on her table is a business card from a Macmillan Nurse, I pick it up, I step out of the bay Julie & her new friends are in and call the number, sure enough it is a lady called Steph and she confirmed she and one of Arrowe Park’s oncologists had visited Julie, I explained I was on the ward and asked could we possibly meet. Within fifteen minutes we were introducing ourselves to each other and Aga kindly let us use the staff room for a meeting.

Richard the oncologist asked me where I thought Julie was and where the hospital was in treating her, I explained with a brief but detailed overview; Julies platelets are a concern and unless they pick up chemotherapy is at an end, she is contending with a large blood clot & her condition is in my view deteriorating also her quality of life is being impacted by a much increased level of seizure activity, and she is almost but not quite bed bound now, she is on oxygen, in turn all of this is causing her mild distress and she shows signs of mild agitation right now. I explain I‘ve previously seen all of this with losing my dad in the same manner. Richard the Oncologist said he felt I’d got an excellent grasp of the situation.  He explained he now felt the benefit of chemotherapy to Julie (even if her platelets hold good) versus her quality of life has reached a tipping point in his opinion, I agree whole heartedly.

I explained despite all of the above and even though when the Lomustine was first considered & Julie didn’t want it she still went ahead and she was ‘relatively fit then’ that on admittance to APH I had the difficult conversation with her asking she consider all her options now and she responded she wanted to fight on. I expressed Julie was certainly stronger than me for I am certain I would have given up before now. I explained that I would talk things over with Julie again but they needed to understand and accept that as Julie is still mentally alert that she and she alone will decide her future and we all would for now have to accept it. As part of the conversation it was queried by all three of us why there was a plan to transfer Julie to a rehab unit at Clatterbridge, we all agreed there was nothing to rehabilitate as such and that trying to make Julie walk again given how weak she is now and that the work required on her left leg is realistically a waste of everyone’s time. It was decided that this plan would be ‘abandoned’, Julie was only comfortable with it as in her words “It’s nearer the (on site) hospice”. I told them both I’d rather bring Julie home  and we care for her there but a) we would need the house evaluating by a professional team, as it is bringing her home isn’t realistic and I will not have her discharged until we can care for her properly & b) she has previously expressed she doesn’t want to come home. I said I’d raise all of this in our next chat shortly. Julie had also expressed the night before that one of her fellow bay mates was looking and sounding depressed and she too thought she was slipping that way. I asked Steph could she arrange for counselling for Julie, it was agreed. I feel comfortable with what has been agreed between us but this is going to be one of the hardest ‘sells’ of my life.

I returned to the bay and Julie was awake, we hugged and kissed, god I miss this woman’s soft skin next to mine. We chatted but then Julie needed the commode and I’d promised her ‘Pork Farms Pork Pie’ for her tea, so I shot off to a nearby Sainsbury’s bought pie, salads, dressings and a proper china plate, even bought a sharpish knife to cut the pie with. I went back and made us a picnic to share, romance will never die so long as we are together! She nibbled at her pie, barely touched the salad and soon asked me “So what did you glean from the doctor?”.. I gulped internally thinking ‘here we go’ I quickly turned the tables, “Well tell me first what you gleaned from your chat” she responded with a fullish grasp “They don’t want to give me anymore chemo and I won’t be going to Clatterbridge.” I explained that this was my interpretation too and filled in the other bits that I’d discussed; she was pleased about the counselling. I explained I wanted her home, APH as lovely as it is, is not the place for her to fade away.  I was hit with every conceivable reason why it could not happen, I batted most of them away and then from my negotiators perspective a chink of light showed itself, “My bed would need to be downstairs” (in sales we would see this as a buying signal) I explained “it’s not an issue, we can put your bed in the lounge” At this came a shake of her head I explained the dining room wasn’t an option for “We have no curtains up in there” long story I won’t go into, instantly she came back with “You can get some from Ikea”, aha another buying signal! But then followed by “I don’t want to go home, I don’t want to die at home!” we both burst in to tears and I’m grabbing the bedside curtains to give us some privacy.  God I hate this, all of it, we are both distressed and in turmoil. At this point ‘all bets are off’! I’m at a loss, I don’t know what to say or do. I explained I felt Julie was stronger than me for I could not do what she was in clinging on; I asked what her motivation was now “No one wants to die” was the response. Again we cried, I added “If you are clinging on thinking of me or the family, please, please, reconsider, you’re poorly now very poorly, I don’t want to lose you but It’s so hard watching you suffer, you’re almost bed bound and the seizures are coming thicker and faster, I really want you home” We were sobbing, this is impossible! Julie has every right to fight on, whatever the future it will be her decision alone, I’ve compassionately explained and try to reassure her that it’s ok to let go but this conversation has to end for both of our sanities.. We dried eyes, we kissed, we hugged but no more was spoken on the subject I cannot afford to increase her stress levels. Eventually it was time for me to leave, Another sunset beckoned, well had it been sunny I might have seen it, I just used to time to reflect, I am clueless right now.  I head home to the empty house, it doesn’t feel like home anymore… By three a.m. I am wide awake, I need to find a solution to the nightmare deadlock, I cannot leave Julie in APH lovely as the staff are. I stayed awake, sleep was over for tonight, I rose at 4.45, showered and I was at my desk by 06.00, three hours before most of my colleagues would arrive. On the way in I am still thinking, “What is the answer”, it suddenly came to me. “What if I can get Julie straight from APH to the hospice?” I knew she was comfortable about going in to the hospice, now the only thing was, could this realistically happen?

At 09.05 I called Steph, the Macmillan Nurse and explained the night befores’ conversation with Julie and that coming home was looking increasingly a no-go. I asked about the option for Julie to go from APH directly to the Hospice IF it was presented to Julie as an option. Steph felt it was worth exploring and that on Friday there was a multi-disciplinary team meeting and she would raise it with the team then. I said I’d raise the proposal with Julie and will let her know Friday morning first thing.

Vince & Denise were coming down to visit Julie, last week’s visit had to be postponed. I left the office early afternoon and headed to the hospital, approaching the lifts I stumbled upon Vince & Denise, truth be told I could as easily just walked past them in my own universe. It turns out ward is on lockdown again!  A bit of humour, no one told visitors already on the ward; Vince had mislaid his mobile so went back to the car to get it… When he got back the signs were up, he couldn’t get in Denise is in with Julie oblivious to all of this. Eventually Vince got in, twas like doing the hokey cokey! (In out, in out). Anyway, we had a coffee and I said I am sure I can get us back on to the ward. Sure enough my goodwill charm bank was still in credit! Julie is gobsmacked at my cheek & ‘abilities’.. Vince & Denise are the truest of friends so I had no issue in discussing the hospice proposal with Julie in their presence, there was a slight smile and she nodded her head… Result, I thought!..

I was popping home to get Julie’s brother, Phil, there had been a call….

Jean from the Merseyside Woman of the Year Competition had called. I called her back! Julie has made the finals! I understand she has won a category!!!  Which one? That won’t be announced until the award ceremony 22^nd June. A public vote decides the actual Merseyside Woman of The Year award, voting starts 25^th May, I’ll get you details and I’d welcome, nay, I’ll beg for everyone’s support in voting for Julie.

Meanwhile back at the hospital Julie is having an increasing number of seizures on top of everything else, they’re not huge and they’re not lasting long but they’re still scary for my pretty woman, tonight as her latest seizure subsided Julie said “I’m not sure I’m going to make it to the hospice”. I held her hand & assured her “You will hunny, you will”. Things are moving on,  Julie has been visited by another Macmillan Nurse, Dawn, who tells her the palliative care team are coming in the morning at 10.30, Julie asks will I be there? Hell yes I will be.

Friday morning and I call the Macmillan Nurses office to speak to Steph, voicemail! I left a message explaining Julie was comfortable with a move to the hospice, this is a huge relief for me, I suspect for some of you too. Hopefully  I have got the message to them in time for the ‘mdt’ meeting.

Ten a.m. & I’m pressing the button for entry to the ward, staff obviously have their routines & anyone (visitors) coming in at this time of day is a distraction to their routine, I said good morning and by this time I was close to the office of Emma Hare, the Ward Sister , she spun her head upon hearing me, I did my usual good morning and explained I was in for the Palliative Care team meeting and so despite the Norovirus lock down and my upsetting the ward routines I got a smile and an ok. I try to avoid using people’s full names in the blog, it’s impossible to seek everyone’s permission to include them in our story, if they read their first name and its job specific then they know who they are anyway, some people’s names are in the public domain and that includes Ward Manager (Sister) Emma. I’d like to take this opportunity to publicly thank this unsung hero. A team is only as good as its leader, I’ve mentioned before that I’m a people watcher, lol that’s not to say I stand gawping at people but I see what is going on daily as I walk the ward corridor 20 plus times a day. It’s obvious Emma’s team hold her in high regard and rightly so, I suspect too that in her role its often thankless from the onslaught of family complaints & queries she must have to handle daily, well I’ve only raised one query with her and I can tell you she knew instantly what I was querying and more importantly had a plan of action to resolve it. I’ve spent no time in this lady’s company on the ward, if she reads this I suspect she’ll be somewhat surprised by my 'overview' but the fact her amazing team do such a great job for her and are obviously motivated means I haven’t needed to but recognition is due, a huge thank you goes out to this lady and her team on Ward 26!

I digress, I make it to Julie’s bed side and I keep out of the way,  I pull the curtains around Julie’s bed not for any reason other than to keep my visit low profile, I can imagine many patients thinking “How come he can get in like this and my visitors can't?” better to be discreet. I apologised to the amazing Liz who is doing the drugs round and as soon as she is finished dishing out Julie’s drug cocktail we start to chat. Julie is back on an IV of fluids, she’s had a poorly tum but no it’s not Norovirus thank goodness. It turns out on top of everything else it seems Julie has an infection somewhere, there is no let up for her. Her white blood cells are low as a result so they’re hitting her with a super antibiotic via the IV line too.

Over the last week or two Julie is beginning to show continuing signs of anxiety, such little things seem to ‘eat away’ at her. Her general health worries me and whilst no expert but based on knowing my darling wife & my experience with Dad I still feel her time left with us is very, very limited, I’ve told family & close friends that I still hold the view Julie is unlikely to see the fast approaching month of June…

We are soon joined by Dawn and we are introduced to Dr Cathy Lewis Jones, Medical Director for St John’s Hospice. She introduced herself to Julie and in a very compassionate manner held a small consultation with Julie; Dawn had clearly done her research into Julie and contributed significantly to the consultation too filling in blanks or queries. Dr Lewis Jones had picked up on Julie’s mild agitation and she explained to Julie that now was a time to relieve her anxieties and they had medication that could do that, she also explained that in her view the way forwards was to get Julie home NOT into the hospice, she based this on several points 1) The Hospice is full, 2) that there was also a waiting list and more importantly 3) she felt from her experience that Julie was some time away from needing the hospice’s services. I’m listening intently and am somewhat ‘gobsmacked’! I was invited into the conversation and shared the conversation about how Julie didn’t want to go home but had agreed to accept going into the hospice. Dr Lewis Jones suggested we take this up outside and I bit my tongue,  as she turned back to Julie to reassure and to say goodbye Julie started to cry bless her, I stepped out of the curtain, too many cooks etc, I could hear the Dr assuring her she has an amazing approach.  So we all exited the bay and an office was found for us to meet in. I explained the constraint issues at home that I felt would impact on Julie returning here but she is reassuring In terms of what can be done to achieve this 'liberation' including the palliative care package, having a hospital bed at home, Nurses etc. I’d add at this point I would prefer Julie was at home than in APH but in my view the hospice is where she needs to be. All that said I have to accept the logic of the ‘arguments’ being presented to me by a hospice professional. It was also empathised that Julie’s discharge was going to be a complex one because of her so many ailments and conditions that needed to be brought under control plus the equipment needs at home etc. This wasn’t going to be a speedy job.

The conversation moved on to Dr Lewis Jones & Dawn discussing medications and they would be prescribing a sedative called Midazolam, this would help take the edge of Julie’s anxiety without knocking her out or making her feel poorlier. A low dose was suggested but also in the knowledge that it could be adjusted up or down. This would be applied via a syringe driver, it was decided because of Julie’s mobility issues and as it’s applied into a muscle not a vein that it goes into her right thigh. The advantage of this method was that it meant at least an extra two nurse visits per day. Dr Lewis Jones added that she was still placing Julie on the hospice’s waiting list and that they would seek regular updates from the Macmillan Community team (of which Dawn is one) and that yes, when the time is right space permitting Julie could be moved to the hospice in the meantime a six week care plan will be put into place.

Well meeting concluded I headed back to Julie’s bedside and talked her through our meeting, she is amazingly ‘relaxed’ about coming home, what a difference 24 hours makes! She asked how long I said at a guess 7-10 days, I didn’t want her fretting, then a mini ‘disaster’, Dawn came in to say bye for now but then she drops out, “I work in the community normally and so hopefully I’ll see you at home on Wednesday”. I’m gobsmacked but I am not going to lose my cool in front of Julie. But having already emphasised the need to reduce Julie’s anxiety how could Dawn come out with such a statement? I said “I thought we had just discussed this was a complex discharge?” the response was “Well yes but we are going to try & fast track it”. I am truly lost for words at times, I know Julie, if we say 7-10 days and it happens in five (as in this revelation!) she would be fine with it but now if it doesn’t happen in five (and it will not) she is going to fret and become more anxious. I’m not impressed, truly not impressed.

Why do I say it won’t happen in five days? Well Julie has this infection and they’re trying to find the cause, they will not be discharging her until they get that right, also, its Friday lunch time, no way on this planet is the OH team going to be able to get out to our house to evaluate it, order the equipment needed and get it delivered by Wednesday! To the medical professionals reading this, I’d say “have the common sense to manage the situation, include ALL stakeholders (including key family) AND if a plan is agreed then bloody well stick to it! Or at least consult on it rather than shooting from the hip.”

So I leave the hospital and I’m totally confused, 24 hours earlier and I think Julie is very close to 'leaving us', now an expert is working on a six week palliative care plan and saying it may need extending or then again not… As well as the blog I run a Facebook private group to keep relatives around the world and close friends updated almost daily so now I have to go home and inform them that in the Dr’s opinion Julie has longer than I believe she has, it makes me look stupid but hey that’s my problem, though much as I criticise medical professionals for raising expectations I may have inadvertently done the same to this group. Deep down I still believe my expectancy of Julie is correct, only time will tell. All I know is prolonging this by drug intervention benefits no one, Julie’s quality of life has gone, yes mentally she is mainly alert but to suffer seizure after seizure, to have cannulas stuck in her and that in itself is or can be stressful, add to that the obvious bruising, the fact she cannot get out of bed unassisted now and spends I would say at least 23 hours a day in bed and is constantly finding something to worry about, this is no existence for anyone let alone my darling wife & soul mate.

I realise when I get out of the hospital that the meeting had gone on longer than I had anticipated, I was meant to be going in to the office but it’s not feasible now, I'd arrive and it would be time to leave, so I called Craig, the Director I report in to on a day to day basis and informed him I'd book it as holiday. On top of that my dearest friend Casper is over again today and my Mum is going to be arriving later for the weekend, she hasn’t seen Julie since Henry’s funeral in February, I know they have missed each other. Well Maureen (Mum) finally made it, a kind,valued and long standing family friend Celia drove her up from Warwickshire and was returning Sunday for her. They had a bugger of a journey, four hours! Welcome to England on a Friday afternoon! I take people up to the ward and then beat a hasty retreat for the staff are being more than kind and I get to see Julie as often as I want so others deserve the time with her, there are of course often tears.

The weekend is relatively quiet, it’s a mix of doing stuff with Casper & my mum, a lot of eating out which is great for my waistline lol and visiting. There was a surprising highlight, two families off the TV show Gogglebox have shown extra ordinary kindness one in regularly enquiring about how Julie is and the other Ralf, Viv & Eve have promoted Julie’s blog on twitter, I’m thrilled for it helps spread the word on what I hope many of you find an informative way of dealing with Cancer. I was sat in the hospital coffee shop when I noticed Ralf, Viv & Daughter Eve having been collared by a fan(s) wanting their pictures taken. After this all died down I went over and introduced myself and thanked them for their support, these ‘guys’ are lovely. After thanking them I let them get on their way. I returned to my coffee and my friends and we were chatting away, a good five minutes later Viv returned on her own, she has a business in Birkenhead’s pyramid shopping centre I believe tattoos and crystals for healing. Viv had returned to give me a healing stone for Julie! How kind is this, It’s no boulder lol but the gesture to me is boulder like. I gave it to Julie and explained who it was off. I’ve made the point recently to others and I’ve not shouted about the people who have supported Julie be it by tweet, emails, letters or in person, you are all important to us, I mention the celebrity involvement purely because of the power they have in helping spread the word on the blog. IF this helps just one more person then I am truly grateful, the blog is to tell Julie’s journey and to hopefully help others.

Ha well Mrs Shute is not for giving up the style despite her condition, "Bring me in one of my smaller Cath Kidston Handbags please, my syringe driver has to be tied up when I'm being moved on the hoist, so I can put it in the bag instead" lol. She'll kill me for this pic as she wasn't looking at the camera but I never realised until I got home...

Its Monday morning, this is hot off the press so to speak and typifies what I’ve said above, medical staff will you for god’s sake listen and understand the impact of your actions!!

Julie text me at 07.49 it read: “Hunny, talking to one of the night nurses they are looking at fast tracking me out of here TODAY!!!!”…  (Me....."THE HELL THEY/YOU ARE!!!")

Calmly I called the ward and asked for Ward Manager Emma Hare, I explained the text and explained my concerns, we are not ready to receive her at home! I expressed my concerns, why when everyone knows Julie is suffering from slight agitation and worrying about anything do these things happen? Why was I not brought in to the loop, ladies and gentlemen to coin a phrase my late father would use “you are going about this arse backwards!” For an industry that often uses the phrase ‘stake holders’ why are decisions being made that don’t include all of them such as in this instance me?? I want my wife home like yesterday BUT IT WILL HAPPEN PROPERLY and be planned. Emma explained yes the palliative team do want to fast track Julie home, I explained the house needs assessing and equipment needs supplying. She explained well the teams can get the items supplied quickly, probably today even. Well guys, I work 43 miles from home and I am not sat here twiddling my thumbs to accommodate plans I have no prior idea about, jokingly she said you might come home and find it all outside your front door, I love the team’s humour and compassion and that we can talk and share serious concerns light heartedly. Emma appreciates yes in reality these things need putting in place first. I’ve also got to sort out Nursing cover for Julie, she is going to need 24 hour care now, she gets it in hospital so why would she not have it at home? So many things to consider for myself, I need to speak to my employers and discuss my options too. I can handle these situations that some may find stressful, I truly 'feel' for those baffled by systems such as medical teams.  Julie certainly will be feeling the stress  yet the one thing empathised recently is the need to keep Julie calm and reduce her agitation, question: “How the hell does communicating in this manner help achieve peace, calm and reduce stress?” It doesn’t. Emma appreciates my comments and yes we will work around this and everything will work out fine but in a joined up planned discharge and home arrival way. Emma said she would go and speak to Julie and she did. Again partial tranquillity returns to Julie’s life, I can see though I have a busy 24/36 hours ahead of me……