Macmillan - Their important role

I finished off the last blog referring to people's generosity, I've more to tell you of but I also told you about my unbearable pain and how I was almost catapulted into next week on morpine hehe, It wasn't funny at the time.. Part of the problems with any incurable/terminal illness is they get progressively worse and in the case of cancers such as mine the treatments which are really only controlling my pain and agitation caused by fluff well it needs controlling but as fluff grows symptoms get worse, I try not to think of this as a tumour growing in size over and into my brain, I know it is, I can't stop it, I just need to have its effects controlled so I can live my days out in comfort, so far despite the odd glitch it's so far so good but it just doesn't happen, let me explain more.

When you're dying from cancer you're put on what is called a palliative care pathway, most of us don't realise or appreciate there is an army of community nurses dashing around day and night to support poorly housebound patients. In our area the community nurses (formerly called district nurses) are associated with specific health centres, they become a major part of your care programme. Before I left hospital a care plan was put in place by the experts once I got home it was re-evaluated and tweaked once the teams saw how I was. Initially the nurses were coming in four times a day, always at least two of them sometimes three or four, I struggled to remember all of their names but these really are Angels, mainly female but I have at least four male nurses. Sex irrelevant these teams are incredible.
They arranged for all of the nursing equipment that I need, from dressings to catheters, to equipment to flush the catheter as needed, my sedatives and morphine too. I still order my regular medicines from the GP but this team work in close co-ordination with our GP, Andy Lee, I leave all contact with our GP to Andy, he and Andy get on well, my Andy can fill me in with his 'cat sat on the mat' approach to explaining things to me, I get lost in big words and well unless the conversation involves food or drink or me saying "What time are the carers coming"? I lose the conversation pretty quickly, this is fluff again, my memory was always so good. An example is, two od my carers, Steph & Ann are fantastic, I truly don't know how I would cope without them each weekday morning, I laugh and cry with them (me crying), they know me now and I know and trust them, I look forwards to their visits for I know I will be handled in my hoist proficiently and safely, I see them most days but then suddenly I'll say to Andy, "Who's that girl that comes in the morning?" Andy then fires names at me as I look back not recognising them, once the job description is thrown in and Andy say's "Do you mean Steph or Ann?" the penny drops, "Steph" I answer. How do I forget someone's name, someone so special to me now? I feel bad, I don't want to be like this.. Anyway Andy relays the Drs information to me, hehe I'll have forgot it in ten minutes bless him...

So I've got our GP as part of my team, I've got a huge team of community nurses as well, they will tell you though that they're just part of a bigger often unseen team, whilst they are expert in a lot of fields, Cancer patients have a further layer of expertise back up that the GP's and Community Nurses are supported by, I'm referring to The MacMillan Nursing Team. Based at Arrowe Park Hospital (my second home) they liaise between ward staff especially when a patient is to be discharged to home or to a hospice. They also liaise and support in the community, this is important for you to understand for we see or hear of Macmillan Coffee mornings etc. Macmillan fund these Nurses and specialist train them, I can tell you it takes a special kind of person from my experience to be understanding of the patient, the patient's support team and also other family members/carers such as Andy. We've met four forgive me two whilst I was in hospital out of it I've forgotten their names, two I'd like to name and then focus on just one of these angels. Andy has met David, he speaks highly of him and he was recently on weekend call when I was hit with the 10ml of morphine but our day to day Macmillan Nurse, Jayne, well I'm not sure how we would have coped without her, she's lovely though I invariably end up in tears when she is here, she is compassion and understanding itself, she uses language I understand, she is tactile which reassures me and she talks sense when often I can't rationalise, I'll explain more in a bit. Jayne and her colleagues support the nurses and the GP's GP in case we forget is 'General Practitioner' there are too many medical fields for them to be experts in them all, pain management in cancer patients for example is a difficult call and varies by patient. Jane assessed me early on following conversations with Andy, he gives her the background she comes and sees me, the three of us chat and a plan is concocted, so after the zonk out morphine dose and pain Jayne came out to see me/us, she explained it might be time to move my morphine into my syringe driver. Panic set in, I've worked as a healthcare assistant I know what morphine does and if I'm getting it all day I'll be zonked out yes? NO! Jayne explains in my case the dose is so low and this is to lower my need for the  back up oral morphine (Oropmorph), I can still have that if and when I need it. Morphine is a controlled drug that means it has to be accounted for, Andy keeps a note book with the date in the dose, the time it was given and who gave it me. Jane found this incredibly useful hehe Mr Shute does have his uses hehe. Jayne looked at my usage pattern and then explained basically we will switch it in to the driver, No it won't make me tired or knock me out at this dose, initially im getting half of the zonk out dose and instead of one go its delivered throughout 24 hours. Jayne on getting my agreement then contacts our GP and the community nurse team for she advises them, they then have to do the prescriptions, collect or have the controlled drugs delivered to ours to go in the nurses 'CD' bag, its sealed with a security seal, this is checked daily along with the precise contents, this is serious stuff, remember Dr Harold Shipman? it was morphine I understand that he was using to end patients lives, he was accountable to no one so things have changed for the good.

So as soon as Jayne advises the teams the next day the morphine is added to the syringe driver contents, my other drug in there, Midazolam, has started to not quite take the edge off my anxiety so again through Jayne and my agreement we increased this dose from 10ml in 24 hours to 12.5ml in twenty-four hours, this is all baby steps, eventually fluff gets immune to it and jumping forwards to today my agitation of the last week and pain levels increasing have over nine weeks resulted in does creeping up my morphine is now at 7.5 and the medaz is at 22.5ml, slowly the volume builds up and it will continue to, I need to be restful and pain free, I hate to fret. It's with Jane's expert assistance I'm getting just enough and each time it needs tweaking its done so without sending me into sleep for long periods, yes I do sleep more now but equally I fight it the best I can. Above all through this process everyone is very very supportive, at the end of the day as Andy reminds me it's my life, its my treatment and the ultimate say lies with me, I know I cannot just come off this stuff now for the pain will be unbearable and I suspect I'd be ranting and raving at everyone but the choice is always mine, as a patient remember that, as a carer or relative remember your loved ones have the choice, like Andy as he says for better or worse, whether he agrees with my decision or not he supports me 100% in my decision. My decision always but I take on board the rational and independent and reassuring advice from Jayne and Andy talks sense where sometimes I cannot see any, I trust them both, I trust all of my palliative care team... Sadly I know at sometime I am likely to lose consciousness what I do know is if and when that day comes my team will be making the right decisions, decisions I'd have supported were I awake and able.
Jane often chats privately to Andy, Andy is what is known as proactive, as in if something is happening out of the normal patterns with me rather than let me suffer he calls Jayne, explains, gives his view and asks for her professional expert opinion he tells me most of the time they are 'singing off the same hymn sheet' so when Jayne arrives a) she knows what to expect in terms of my mood and b) she is ready to advise BUT she always talks me through everything, this woman has squeezed more tears out of me than anyone, I can let go with Jayne, she's seen cases like me daily for sometime, she's not at all hardened, she is compassion itself, thank god for Macmillan Nurses. My chosen charity remains Clatterbridge Cancer Charity, It always will but I know Andy will and does donate and supports Marie Curie, our local St John's hospice I mentioned last time and Macmillan. There is far more to Macmillan than meets the eye, one of our first blogs explained how they advised us to tell our grandchildren that grandma is poorly, Andy has called their support team a couple of times for a chat to seek advice, they've got forums too and its all funded by charity, throw in the Nurses too.... This charity is formidable, please read the link, you may not need them today or tomorrow but the facts are that whilst more people now survive cancer than die from it more people are being diagnosed with cancer each year too, one day if you haven't been touched by this beast yet, you or a family member or friend will be. Be it coffee mornings this September or be it a bucket being 'rattled' (lol collectors are NOT allowed to rattle buckets or tins at you any longer) at you outside a supermarket, please bear in mind how much this amazing organisation must cost to run. Check out the link below please and well if you can either do something or donate, every penny counts to every charity and I can testify to the amazing work and high standards your donations help deliver.


http://www.macmillan.org.uk

Dedicated to Jayne and her Macmillan colleagues at Arrowe Park Hospital..

The fears of day to day living & It's my Birthday

Me again, so sorry, I’m very tired and very slow these days, I’ll explain more further on.

Well I made the awards, had an amazing day but it was all so tiring, everything these days is so tiring for me but I’m still here, still fighting fluff, I surprise myself at times.

In terms of surprises, well my life is full of them at the moment mainly good and I’ll try and focus on them.

Andy had decided that following the success of the wheelchair expedition to the Merseyside Women of The Year Awards and that Tony from the hospital had now referred me to wheelchair services for my own that we needed to do something about the vestibule, I’ve hated this thing since I moved here, we needed it for storage

to a degree, it was like a mini potting shed and the BBQ was in there too but it was old, very old, the timber was rotting, the roof leaked whenever it rained and well I didn’t like it but we had other priorities in re-modelling Shute Manor or hehe the money pit as I call it. Andy announced he was going to have it taken down and a ramp put in to enable me to ‘escape’, oooh this is scary stuff, what does he want to do, I know what I want to do with it but Andy doesn’t always listen to me, weird given as I’m in charge around here hehe! His “I’ve got it in hand” approach isn’t going to wash with my c

urrent level of agitation, “Tell me what you are having done, It’s still half my house, I know what I want!”.  As it happened he proposed a decking style ramp with a balustrade all around it, I was thinking

the same. “You need to show me the sort of rail, I need to see pictures to visualise it” we found some on the internet but I still wanted to see the detail of the spindles etc so I needed to see the real thing. Andy had posted the job on rated people, only one company answered, thankfully the guys could do the job and quickly, it was Tuesday, he could start Thursday and thought he’d be finished by Friday. Price wise Andy wouldn’t tell me but I’m no fool I know it won’t be cheap demolishing the vestibule and building the ramp and landing, guess what? Yes I’m worrying about this, I really worry about everything and anything now.

Thursday came and Andy who is working flexible hours with work due to needing to see to me was still at home but had to dash to our Doctors and then to our pharmacy to get me a prescription item that I needed. Before he left he explained to Maureen that the Vestibule roof had live electric wires in it and asked she told the builders, he didn’t want them electrocuting themselves. Maureen didn’t hear Andrew properly and in his mickey taking way asked if her hearing aids were turned off, she explained she hadn’t slept well and had a ‘muzzy head’ he suggested she go and rest and he’d be back, on his return the team were dismantling the vestibule, Andy sorted my drugs out and went in to the kitchen to see Maureen who despite being ‘asked’ to sit down and rest was making cakes! Andrew asked how she was and the truth outed, she’d had the headache since Monday and it’s Thursday! She also indicated, well I’ll let Andy take over for this bit… Mum said to me she also had a pain in her chest on the side. I told her immediately to sit down and I was dialling 999, I requested an ambulance, Maureen, Mum, Mother, well she didn’t look well, I’ve lost Henry my mum’s soul mate in January, I’m going to lose Julie this year and now the prospect is dawning this could be the hat trick from hell! Within two minutes a RRV Rapid Response Vehicle with a paramedic arrived and thirty seconds behind him an ambulance and crew, incredible turnaround and compared to the two hour wait for Julie absolutely unbelievable.  The guys soon had her wired up for an ecg and examined her, she explained the not feeling well and the pain in her side. The consensus was this sounded like angina, “We’ll take you in to get you checked out”, even now typical of Mum’s generation she is fighting going in to hospital! “I can’t stay in, I’ve got to look after Julie”, I butted in “You’re going in and if you have to stay in you will”.. “I’ll sort Julie out”.. The paramedics put mum onto one of their chairs with wheels and set off with her, I broke down and cried, I needed to be with mum, I’m genuinely afraid now, “Please god let her be ok”, I need to be with her but Julie is on her own, the carers are here they’re shocked into silence for they’ve truly taken to Mum, everyone wants to adopt my mum for varying reasons, Julie can tell you more later. Anyway, the carers cannot stay, it’s not their job. I’m quickly back in my business like minded rational head, I need to find cover for me. Our dear Neighbour Corrinna was in Canada or she would have been over for me/us, everyone else was either working or too far away, my Mum lives in Warwickshire where she has lots of friends, here she knows no one she is in an ambulance on her own and well I hate to think the worst. Suddenly the only person I could think of was Hannah’s mum Andrea, though she lives in Spain and I recall she was going back, their whole family have become amazing and true friends, yes mainly to Julie but as a result of this we have all grown closer. I messaged Andrea and asked was she in the UK, she answered immediately she was in Hannah’s new flat, as soon as I told her with no hesitation she just said “I’ll be with you in twenty minutes”. I’d kept all the fuss away from Julie, this was something to fret about, in the end I had to explain Mum was poorly and had gone to hospital as a precaution, that Andrea was coming to sit with her so I could go to hospital. I hugged and thanked Andrea and dashed. At Julie’s ‘second home’ Arrowe Park hospital I was guided towards Maureen, it’s amazing how frail she suddenly looked to me, she had seen Doctors and Nurses all super-efficient they’d tried taking blood but she’s renowned with not parting with it, even their ‘champion’ of taking blood was struggling and decided she would delegate it up to a Doctor who had ordered the blood tests, ha, he laughed when he heard and true to form second go he got blood from Mum. His view was her vitals were too good for this to be heart related BUT he would have an elongated ECG done and check the blood results, in Arnie/Terminator fashion it was “I’ll be back”.. When he did get back he confirmed that the chest pain was “Muscular or Skeletal”, phew, the relief was intense, mum could come home subject to the ECG. I had to get back for Andrea was time limited, I asked the hospital call me as soon as Mum could be discharged and back home Andrea and Julie were both good. I let Andrea get on her way, it’s a times like this you find out who your true friends are, I’ll never forget the kindness a chance hospital ward encounter and the friendship that has come from it had created friendships that will last a lifetime now.

I’m sitting with Julie about an hour later the phone rang and it’s the hospital Mum is ready to be collected, I have a dilemma, Julie was safely in bed she’s not been left alone before but I have no one now to cover, I knew I wouldn’t be at the hospital long and we have an emergency button/call service though we’ve never used it. I explained to Julie that I had to leave her but it would be for 15-20 minutes only, she was rightly concerned, I explained about the call buzzer and hung it around Julie’s neck, the risk of her needing it was very low in my opinion and I had no choice, also the builders were outside as a last resort,  so I drove like hell and got mum home in around 20 mins. I had already called work and told them I was taking today and tomorrow off I was going to have to play nurse to both of the patients. As gently as I could I explained to mum I needed her to take it easy, that she is frightening me, I explained my previous comment about losing three of the most precious people in my life, I needed her to slow down and stop trying to run up 28 odd large Victorian stairs to the laundry room on the top, I need to stop her from ironing everything, we already Tracy our Ironing service who did my shirts and the bedding, more items had to go out to be ironed and more bedding was needed to reduce Mum’s workload. This really is a wakeup call of all wake up calls. Julie then spent two days in Mother hen mode and lord help Maureen if she got out of her chair even, lol these two have developed their own method of communication by looking at each other, smiling, scowling, lowering eyebrows it’s like gunfight at the OK Corral  at times as they not so playfully joust, I just look on and try and broker a peace deal as they burst into laughter or equally snap at each other, sigh, get me back to my office desk quick hahaha.

 So Thursday is a wash out and recovery day, Friday was similar, the ramp was coming on a treat! I was truly impressed, Julie couldn’t see it but the nurses and care teams were updating her, I took a few pictures, “I’ll soon have you out of here hunny”.
Right enough from him, I’m back hehe, Maureen scared me, I am so reliant on her now, we all are, she does everything for me during the day, I truly feel like an adopted daughter, I told her I wish I’d known her 40 years ago, she’s so incredibly kind, I genuinely feel loved by Maureen and yes I love her too, I’m so fortunate she’s so kind, she’s told me she will be with me until the end, I’m scared of the end coming but I am comforted knowing Maureen loves me and will be with me, I want to cry…

So Friday Maureen feels a little better and I’m stir crazy not able to do things and I can see Maureen wants to get back to her tasks, I’m having none of it! I truly am not, at the end of the day I cannot stop her for I am trapped in my bed and then im at the point where my concerned bossyness has reached the point where if you decided to poke a dog with a stick even gently whilst it may find it funny initially it would eventually tire and snap and bite, Maureen and I were close to this, but we survived it. Andy was overseeing the decking ramp being built, the team had done a great job, it was functional but not completely finished parts of the balustrade and rails were missing, as the back of it was about a three foot drop when I eventually saw it for myself I found it scary. But the guys would be back Monday. Andy announced “We’re going to New Brighton to the Marino Lounge & café for lunch tomorrow. Here I go again, I’m full of nerves and what if’s. I wanted to go out but I’m terrified my four walls have become my world, well until tonight that is!

 Andy and the carers hoisted me into my wheelchair and for a change of scenery he wheeled me in to the lounge where he and Maureen sat in comfort, Andy laughed for I sat there surveying the room for dust, for things out of place, for things I’d told him to get rid of that the bugger hadn’t! I’m not having MY house a mess. Something was amiss though, eventually It dawned Andy had treated ‘us’ (himself really) to a Bose Sound System for the TV etc last Xmas and it had sat in the TV cabinet, in my ‘absence’ it had sneaked out and was on top of the cabinet. He argued the sounds were clearer and better and that as a surround sound system it could not work in the cabinet, brutally he told me “tough its staying out”, he’ll suffer for this yet hehe..

So my chair was so comfy again, I felt easier about going out tomorrow but “What about the taxi, I can’t get out of my chair”.. There are larger Peugeot E7 cabs and its possible for me to ride in one still in my chair, a standard hackney cab as we discovered when the wrong cab turned up wasn’t going to work. Andy had called the Marino lounge and they’d reserved us a table. Our first jaunt out, it was scary especially the ramp but it works, I was free, scared but free! So at New Brighton, I’m well wrapped up in my chair blankets covering my modesty for naughtily lol I can’t wear knickers with all the other bits and bobs hehe, there’s been times in the past yep I’d been that daring and naughty, lol before I met Andy I once got a train to meet a boyfriend and all I was wearing was hold ups, high heels and a rain mac hehe, I’m giggling at that, I’ve had my moments lol but sadly those days are far gone and naughtiness is the furthest thing from my mind now. I do have a dress on and I have my Doc Martin soft canvas flowery boots on. I look as good as I can do, today is a good but scary day. It turned out too that the nurses were ok with me having wine despite my cocktail of drugs. Settled in at our table Maureen’s bargain £8 home bargains trolley was being unpacked, my cup, my plate, my tray. I cannot sit at a conventional table now well I can sit at it but not eat or drink at it. Oh Winston was with me too and my seizure meds, didn’t need them though, phew. The staff were incredibly

Cheers

kind, the food was scrummy, Andy slid it on to my plate and cut everything up for me and he’d ordered a bottle of prosecco, I love champers and prosecco!

We had a great afternoon but again I’m worrying, I keep saying to Andy “We need to go now” lol I was doing it periodically from when we entered Marino Lounge, “why?” he asked, “The carers will be at home, I’ll miss them” the reality is and he tries to ease my concerns by reminding me the carers come around 6.30 and Andy has already told me we are getting a cab back home at five p.m. “Stop worrying hunny we will be home in plenty of time” easier said than done in my head and twenty minutes later we are having the same conversation.. I hate fluff!!

Getting into the taxi is a challenge my chair has to be tilted right back so I don’t bang

Winston @ Marino Lounge

my head, we are soon home and the ramp makes a big difference though I don’t like the drop at the back of it, roll on Monday when the man comes back to finish it off.

I’m still having my seizures, I’m getting increasing headaches, I’m fretting an awful lot I can’t help it it’s so not me, I try to hold back the tears but it’s not easy, as soon as I cry even if its quietly someone notices and tries to comfort me, if its Andy invariably we both end up in tears, we  both know we are going to lose each other, life is so unfair.

The following weekend the weekend before my Birthday, (it looks like I’m going to make another birthday!!) Part of our second family as we lovingly refer to them Karen, Jamie, Alex & Grace are coming down to see me/us. My illness has robbed us of precious time with one of the most amazing families, Karen is Vince & Denise’s daughter, Andy’s dearest friends when they first met me almost 13 years ago warmly welcomed me into their family, some of the best times we’ve ever had have been at their family events, Weddings, Christenings, Anniversary parties, we even did a USA road trip with Vince & Denise, it was laughs all the way, I’ve missed all the fun recently, rather ‘we’ve’ missed all the fun recently, I forget so often how my illness has impacted on Andy’s life too, he’s had two nights away from me in two years, all of our social events, we used to love concerts, we loved dining out with friends, for two years it has almost just all vanished, we were always somewhere now we are mainly in our dining room…. I truly hope Andy isn’t ‘forgotten’ after I’m gone, he’s going to have to rebuild his life, cope with my loss, he’s told me already he’s ‘going to have to move’, “too many memories and what do I need with a house with 17 ‘rooms’ in it on my own?” he asks me. The next few months are going to be traumatic for everyone I know….Damn you fluff, damn you!!

Enough of the feeling sorry for us, back to Karen & Jamie coming, I am so looking forwards to it but I’m also slightly apprehensive for the children are young and I’m not as able to cope these days, I cried after I snapped at our grandchildren a few months ago, I don’t mean to, it isn’t me, it just isn’t me. Meanwhile back at Karen & Jamie coming hehe, a few days before Andy gets a call of John, his cousin in Northern Ireland, John and his brother Chris want to come and see me/us, they plan to fly in on the Saturday Morning and fly back Saturday late afternoon, a real short visit indeed, I’m so touched the guys want to see me, we’ve only met three or four times when we’ve visited Ireland, I love Ireland! Did I mention Karen and Jamie are coming to see us? Hehe… I’ll get there I promise. Everything is set for the visits until Andy comes home on the Friday night and chaos kicks in, I heard his car pull up, about 45 minutes later he comes in the house cursing, he’s fuming, furious with himself, he only reversed his car into one of our brick gateposts, damaged the wing mirror, scrapped the paint on his door and the front wing and as his window had been open the damage caused meant the window would not close! There is no way the car can be left out overnight for it is ‘summer’ here and it’s throwing it down with rain day and night, also the chances of the car being on the drive in the morning would be next to nil. So ten o’clock at night and he’s having his car towed away, try finding a hire car at that time of night… First dilemma, Andy is meant to be picking up Chris & John at Liverpool ‘John Lennon’ Airport at 08.00, he has no car now! He messaged John and asked could they cab it over here instead, they kindly did. Andy found a hire car and not long after Chris & John arrived dashed off to get it. When he got back he’d decided we would go out to New Brighton for lunch called Josh at Marino Lounge, reserved us a table, called a cab remember we need a big one. So I’m back in my chair and we are heading to New Brighton, well Maureen, John and I are for despite the cab size my wheelchair takes up the rest of the space. Andy and Chris set off in the hire car. We got to New Brighton roughly the same time god, it was cold today. Our table in Marino Lounge was booked and ready for us and we had fun, John & Chris catching up with their Aunty Mo, and us all having lovely food. Around three as the guy’s flight back was at six (yes arrived at 8 fly back at 6) so Andy started calling a cab, 40 minutes later and not one local company could or would supply an ‘E7’ cab! Andy realising the time made the judgement call that we should get the train back to Birkenhead the guys would get the train to Liverpool airport and then Andy would have to come back to New Brighton for the car…

The train station at new Brighton is half way up a sodding steep hill, OMG, we nearly killed Maureen, Andy &  John pushed my chair up the hill Maureen and Chris coming up behind, Maureen being Maureen hadn’t said she was struggling to keep up, Andy was too focussed on me and making sure the guys got their flight ok.. We got to the station and sorted tickets out, we got Maureen sat on a bench, she looked poorly again, I’m worrying again… The Merseyrail station staff are incredible, they asked did Andy need the ramp for my wheelchair and supplied it, they called ahead to our station to tell them to have the ramp ready too! Amazing service. We had to say our goodbyes to Chris and John on the train, I’m in tears for I know I won’t ever see them again, fluff! I so effing hate you!  We got off at Hamilton Square Station as there is a taxi rank, invariably and no surprise we got an E7 cab from here! All the hassle all the problems because well someone at a cab company or ten could not be arsed, sorry but leaving a disabled woman stranded like that is appalling! Another crusade for Andy me thinks…

Well we get the cab home, next time Andy says he’ll book cabs out and the return to save this madness. We get out of the cab, Maureen is desperate for the loo I want in the house, I think Maureen has the keys so I told her (sorry I was rude and impatient) to go open the door, she had no keys! Andy has the keys… he’s behind me.. the only keys Andy has are to the hire car! The car is in New Brighton and the house keys are…. In the car in New Brighton… You could not make this up! Andy says, “Keysafe”, we have a Key safe so he shouts Maureen to come stand with me, as he gets to the key safe he opens his phone to get the code out and his phone battery dies!! You really could not make this up. I’m panicking now, Maureen is crossing her legs, Andy has no hair left to pull out hehe. He suddenly remembers dear friend and neighbour over the road Corrinna has the key safe code, thank god she was in and her phone battery wasn’t dead! Two minutes later we are in the house! Did I mention Karen & Jamie are coming? Hehe.. They’re outside! We’ve been home two minutes, Andy greets them they come in and then he has to dash to get the car, Corrinna kindly offered to take him down. Half an hour later he’s home and his elaborate plans for dinner for all were out of the window but everyone agreed to and was happy with pasta bolognaise.  I needn’t have fretted about Alex and Grace they were brilliant Andy had got a big box of things for them to make, it was so good to see everyone, I’ve missed them, Grace & Alex told me about seeing the lions and animals at the safari park before they came to me. I love children, I’m going to miss all of the ones close to me…

‘Team Everson’ had travelled down this morning from County Durham they are back home tonight too, amazing friends flying in and out on the day, amazing friends driving long distance across the Pennines to see me too, I am blessed. I don’t know how but I held it together as I said goodbye to them all, with Karen whom I’ve been closest too it was the hardest but I did it, I don’t want people to see me upset, again this is probably the final goodbye, its unspoken but it’s the unbearable truth..

It’s been a long day, it’s been a crazy day, it’s been fun and poignant, I’m so tired now..

 

My dear friend and former neighbour from Grimsby Janice couldn’t make it to my party on Friday so she came midweek, drove from Grimsby & back in the day, we’ve had such a special bond for many years now, again it’s another final farewell…..

Cake Decorating

Next weekend is going to be busy for a different reason, It’s my birthday Friday, I don’t want a party, I couldn’t cope with one but I won’t let it go uncelebrated, We invited close friends and family to an afternoon and evening of well just tea, coffee and Maureen’s cakes, I helped decorate them! The mornings are so busy it is just a constant stream of carers, nurses and carers. By lunchtime the table is looking
full, I’ve bought retro style tea plates, napkins and bunting to have hung around the room, I’ve got balloons up too!

Andy, Eve, Me, Winston, Ralf & Viv

We had a steady stream of visitors, my uncle John & Aunt Sylvia had travelled over from Grimsby, Vince & Denise drove down from County Durham and home the same day, ‘my Letty’ came over Thursday to stay as she thought she couldn’t get Friday off work but an 11^th hour reprieve and she stayed all day! Jane a lady who owns the cutest shop called the Drawing Room in Oxton Village came to see me, I used to love to walk up to her shop, her gift range was gorgeous and different, Jane always made me feel special whether I was spending money or not, it’s strange how we become friends with people in varying ways, we were certainly more than retailer and customer. Lots of people were coming and going, Andy had a few surprises for me, one involved him disappearing for around 90 minutes, I don’t like him being away from me, he’s promised to bring someone who wanted to come to meet me, he’d made the promise originally planning to work and would pick a lovely young lady and friend Nikky up after he finished work for she works in Manchester. One of the things I admire about Andy is he is true to his word, if he makes a commitment he would only break it under exceptional circumstances, as a result he drove to Manchester, collected Nikky and brought her to Shute Manor, it’s a long story how Andy had become friends with Nikky, they’d not met before today but thanks to the internet well we’ve met and made some great friends. Whilst he’s away pandemonium breaks out, an amazing surprise, Andy had invited Viv, Ralf & Eve from Channel 4’s Gogglebox, they live locally and similar to now friends Leon & June they had been both pushing for votes for me for the MWOTY  awards and they had been asking about me from when I was in Arrowe Park Hospital, Andy met them in person there in a chance meeting. Anyway Viv and Eve both asked about me regularly even on holiday Viv was messaging Andy privately, I’m still not sure what I’ve done to attract such kind and amazing busy people. Well Suddenly Viv, Ralf & Eve are at the door, we

Ralf,Maureen,Viv & Eve

are all gobsmacked, they came in and wow they were amazing, they stayed almost three hours, Andy eventually arrived back with Nikky, I told her off, she’d brought me ear rings! I’d said no presents to everyone, I had flowers galore arrive, candles and ear rings. I am still in fund raising mode for Clatterbridge so Andy had got one of their sealed buckets and we’d asked people to if they wanted to leave a donation for Clatterbridge instead of buying me anything, I’ve on use for anything now…. Well back at the open house, Everyone is falling in love with Maureen and her cake, Eve and Nikky are both adamant they want to adopt her and take her home! Hands off she’s mine! It was hilarious, Eve I have to say was amazing, for one so young she is so polite, so well spoken, a credit to Ralf & Viv, we share a love of things vintage and the age difference is immaterial, Eve is amazied that Letty and I are so with it Vintage brand wise to Letty about Eve’s dress she said “OMG how did you know it’s Hell’s Bunny?” We laughed, it was time for them to go so Maureen is making up boxes of cakes for them to take, and I’ve got my beady eye on them making sure they don’t nick Maureen hehe. Eve asked me if she could come visit me again and talk more vintage, how sweet is that? There’s a good thirty years between us, we’ve never met before but there is an instant bond, it’s at times like this I hate the fact that I’ve little time left to enjoy Eve’s company..

Andy dropped Nikky back at the station around 10.30, I was asleep by the time he got back, Maureen had cleaned up, she must be exhausted, I am, it’s been hell of a day. Andy came home and got his blow up mattress and duvet and settled down on the floor next to me after having given me my nightly dose of meds.

I woke up at five thirty a.m. and I am in pain, Andy asked me did I want a shot of my liquid morphine, I told him I did, at times my pain is bad today it seems worse but it’s in my feet and ankles today. By 08.45 always prior to the carers arriving as I’m just getting out of bed and I’m hoisted washed and dressed there is a lot of limb moving so I take a dose of the liquid morphine just before they arrive now.  Today they’re running late, weekends are difficult for care agency’s getting staff and everyone has to have a day off. By 09.30 my pain is so bad I’m sobbing, the 5ml of morphine I’ve had so far isn’t touching it. It’s seldom I cry in pain, in fact Andy commented this is the first time he’s seen me cry in pain, he’s right.. Andy called the emergency GP out of hours and  a Dr called him back just after, explaining everything the pain, my crying, the two previous doses, the Dr told him to give me a further 10ml of morphine, Andy double checked definitely a further 10 ml on top of the five already? Not another five to take it to 10ml? No definitely ‘hit me’ with another 10ml so fifteen in total the GP added a higher dose could be given but work on this for now. Andy loaded my syringe and in between my sobs I swallowed the lot eagerly. My son Aaron and brother Philip were staying, I barely remember them there on Saturday, apparently I did speak to them but I’m clueless, I lost almost two days, the morphine had pretty much put me out all I wanted to do was sleep, the pain had gone though.. On Sunday I said goodbye to Aaron, again it’s probably the last time I’ll see my son. Monday I said goodbye to Phillip, so many goodbyes.. I so hate you fluff….

I want to end on a positive.. The generosity of people astounds me, my birthday visitors had been dropping envelopes and money into the Clatterbridge Cancer Charity Bucket, Andy had promised to match whatever the total donations amounted to.. The total was a staggering £250 which Andy matched to £500! WOW…. ‘Team Julie’ strikes again, just a single pound makes a difference to this amazing charity, £500 is seriously significant to them.. The same weekend Karen & her friend Jaime ran a colour run in Newcastle in CCC Tshirts and asked for CCC donations, roughly another £100, people say I inspire them, I’d reply you all humble me…

Right now I never know if this is my last blog so I’ll wish you all well, I know Andy will keep posting, I promise I will chip in for as long as I can but I can’t promise how long that will be for now… Sending you love & kisses.

Did I mention it's my Birthday? hehe

 

 

Getting Through Each Day

Andy here, I thought I’d bring you a slightly different perspective of how things are for us carers (Mum & myself), I suspect for a lot of others too,  I also need to update you on the things I’ve been ‘working on’ though that might be a separate blog.

Julie’s most recent blog sees her explaining her worrying quite a lot, this is from past experience with losing my dad the same way a similar trait of this disease, my mother and I comment often how similar their journeys are, the worrying and agitation is all part of the journey. It’s hard as a husband to see this occurring, it’s hard at times to handle too but somehow we all have to cope  Julie, myself and Maureen my dear Mum, I can only tell you how I feel and how I cope, so here goes.

Julie & I promised early on that we would remain true to the people we were when we met and that we fell in love with, this still holds true today, it would be easy to fall into the trap of patronisation and putting on those whiney voices that I’ve heard others do in the past, why would we change? I’ve had to try and become more understanding, I’ve bit my lips so many times I’m amazed I’ve not bitten right through it. I can tell anyone reading this that this journey is not easy, it has to be walked, as I’ve told many people recently who have checked on me that for me there is only plan A, there is no plan B, in other words whatever it takes to walk this journey with Julie as long as it takes I will be there with her day and night, that extends to me sleeping up to four nights a week in ‘her bedroom’ on the floor on a blow up mattress, I’m never fully asleep for there are times that Julie needs assistance or reassurance, often too the night is the only time we are truly alone. If you know anyone walking a similar path and you can support them, well, just do it..

In terms of worrying a lot its obviously not just a one way street, everyone worries about Julie, a lot of you ask with great frequency and it’s lovely and yes it helps, I do get a lot of “Make sure you look after yourself” comments, my answer is always “Easier said than done”. Julie acknowledges herself that her fretting and her illness at times makes normal day to day tasks demanding and draining, I’ll give you some examples but whilst they are draining and exhausting there really is no option but to get on with it. I often remind others that our wedding vows said “In sickness and in health”, to me our vows were precious and although I’m not necessarily the kind hearted saint a lot of you seem to find me I am totally devoted to Julie and even more so as our time together is increasingly diminishing, another saying I use a lot and mean is “There is no plan B”, Julie is plan A, end of story, what she wants she will have, what time it takes, well it takes be that day or night. We have fantastic support and I’ve said before if it is offered to you in a similar set of circumstances gratefully accept it. Julie, Mum and I are supported by a team of carers and community nurses, furthermore we are supported by our local hospice St John’s Hospice who run a service called ‘Hospice at Home’, basically their team will come and sit with Julie for up to four hours, sometimes we get one visit other weeks it is two. When it all first started Julie’s view was “I don’t need this service”, she and I suspect a lot of you may not realise that a service such as this AND the equally excellent Marie Curie Nurse team that support us too up to four nights a week are primarily not for the patient’s benefit they’re to relieve the pressure of the family care workers and they’re invaluable. For my (she’ll shoot me for telling you but..) 83 year old Mother whom I am sure believes she is still just fifty the way she runs around, Hospice at home gives her a chance to go down town, to shop or just to chill, to go lie down and catch up on sleep, whatever she wants to do to recharge her batteries, Julie really could not be in more capable hands than Mum, Mother, Maureen… She washes and Irons, she cooks fresh meals, she makes Julie more cups of tea or coffee than most navvies could consume in a day, she tires me out just thinking about what she does. From my own perspective from arriving home from work I try to assume the role of loving husband, soul mate, nurse & carer, I can tell you and it’s not Julie’s fault it is the disease but her insecurities and fretting makes her more demanding of my time and attention, it can at times be a non-stop onslaught of “Pull me up the bed please, (more on that another time), check my catheter, may I have a cup of tea, I’d like a biscuit, help the carers put me on the commode, help them get me in to bed properly, put my cushions in place (long story for another blog lol), is my urine bag empty, please make sure my ‘kylie’ (water proof/absorbent bed cover) is in the right position and right way around, where are my drugs?” (of an evening Julie takes one liquid, four different types of tablets, five if we include paracetamol, six if we include the ad hoc doses of liquid morphine, on top of this she now has two drugs in her syringe driver too but those are the exclusive domain of the community (district nurses). When the night nurse team come in to check her syringe driver they will also on request (every night) hoist Julie out of bed on to her commode, as I’m there despite the professionalism of this team Julie insists I assist and oversee the operation, to a degree it is a case of many hands make light work by assisting, once on the commode Julie’s modesty kicks in despite to put it bluntly all of her ‘bits’ on display whilst being hoisted in her sling but once on the commode she likes her privacy from everyone.. except me hahaha… I use the time to talk to her, to get the freshen up kit ready for the nurses as they pop into our lounge to be entertained or fed home-made cake by Mum… the freshen up kit includes baby wipes, a bin bag, various creams, invariably I’ll light a scented candle

Hoist & Harness at full lift position knees would be in front of where the 'gold sections are

too, the last thing I want is Julie being upset nor her living her life in a less than freshly smelling room. I’d like to thank all who have given Julie scented candles she loves them and at times like this they can be most useful. Julie lets me know when she is ready for the nurses, the operation of getting Julie into her harness and onto the commode is almost a military precision operation, the harness has to be slipped under Julie as we gently roll her from one side of her bed to the other then the harness is slipped under her, she’s rolled back and the harness is retrieved and put in position, positioning, it is essential it’s in the right position to prevent pain and to prevent the risk of injury. Julie’s harness has four straps four near her legs, two near her shoulders, these are attached to an electric portable hoist, her bed has to be lowered (electric controls) the hoist raised to its maximum height to ensure Julie is clear of the bed, as a team of two or three we then have to assist her lifeless left leg off the bed, the hoist is turned 90 degrees, the legs opened and the commode slid under my poor dangling wife. We then have to lower her accurately into the right position (and god help us if we get that wrong!). The opposite applies after she has used the commode, she is lifted, the commode carefully slid from under her and the Nurses or occasionally myself will freshen Julie up, again at this point she is freely ‘suspended’, of course this raises her stress levels so speed is of the essence but so is gentle.. We then have to twist the hoist 90 degrees and get Julie back over the bed, trust me it sounds simple, it isn’t always and she has specific requirements to positioning. Once safely in we as a team work to prop and support her limbs with cushions (5), her pillow must be ‘just so’, she has to have a night bag fitted to her regular urine bag as it holds more fluid, we have to cover her up then put a final cushion in place to support her lifeless left arm, we then


The one and only Winston

add ‘Winston the teddy’ who as well as being cute acts as a seizure alert to Julie. Her left side is completely dead until a seizure occurs and they mainly present themselves in her left hand & arm, as soon as she sees Winston twitch we know a seizure is on its way and we have to grab for her seizure meds instantly. Once Julie is settled down its then a case of doing the less pleasant clean up jobs such as emptying and washing out the commode, re-positioning the hoist and putting it back on charge, getting rid of the nurses aprons and the clean up kit, whilst I complete these tasks the nurses do a final check of Julie’s syringe driver. As these medicines are classed by the home office as controlled drugs, the Nurses have to go through a strict recording routine each night. Daft as it sounds, it’s probably an hour from start to finish, as I wave the nurses off and by now it can be 11pm I then have to give Julie her tray of drugs explaining nightly what each

Winston the seizure alarm in situ

is for giving her drinks in between, after this its “Can I have a tea please?” so I’ve been up since 06.15, mum since 06.30 and although Mum has had Julie to look after all day she heads to bed for 10pm, on the other side as soon as I get up I go through the routines of getting Julie settled and ready for the carers, preparing her 10.00 a.m. drugs, on some days she may need my support until the first team of carers arrive at 08.45, I’ve then an hour’s drive to work where I remain most days until around 6pm then its home to the above routine, so its 10 or 11pm, I’ve not eaten, barely sat down and I’m exhausted. At least three and often four nights a week Marie Curie support us with a night sitter who arrives at 10pm and sits in with Julie overnight and they leave at 07.00, with me coming down to relieve them and for a handover chat around 06.30. This team are truly invaluable, again Julie didn’t recognise or realise the worth of this team to especially me. On nights we don’t have a sitter I sleep in with Julie, I sleep on a blow up mattress some three feet below her bed, a combination of blankets, throws and a quilt over me, I do get some sleep but I hear Julie ‘rustling’ or occasionally asking for help, this could be that she’s uncomfortable or occasionally “I’m hungry” despite it being one thirty in the morning bless her! (This isn’t Julie it’s the drugs and the disease), I can tell you when I rise at around 07.00, I am mainly exhausted. It’s not fun but as I said there is no plan b, Julie comes first, morning, noon and night. Sounds hectic for one day uh? Imagine it for seven days a week for (so far) nine weeks… This wasn’t a plea for sympathy, I can hear the ‘awws’ from here, it’s just me explaining from a partner’s and carer’s perspective of how your life gets turned around, I would not have it any other way, Julie comes first, first time every time. I suppose what I hope it does is help those in larger families who are close enough to help support another relative, it’s different from afar be it in the this country or be it for relatives abroad but, if you’re local hopefully this gives you a flavour of what it takes getting through each day…

Julie & Winston


This Blog is dedicated to St John's Hospice Wirral  & Their 'Hospice at Home Team' & to Marie Curie Nurses everywhere ( A special mention for two of ours, Lynn & Dot, who either keep Julie in fine humour or oversee her as she sleeps and equally as important that I can enjoy the comfort of my own bed knowing Julie is in safe hands.)

Please visit the links & see what they do, they are both registered charities too if you can support them please do.

http://www.wirralhospice.org/

https://www.mariecurie.org.uk/

 

 

 

 

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!