Seems someone hasn't read the script.....

Thursday 20^th August, it’s daytime and Julie has taken no drugs orally since she briefly woke Tuesday evening. She’s slept upwards of twenty-two hours a day since Sunday. She’s hardly woken and when she has and we’ve given her fluid she’s hardly drank or if she asks for a meagre biscuit she feels like she was choking it, seems as fast as she wakes she’s back asleep again, she looks at peace, she doesn’t seem in pain, she’s asleep pretty much all day and when she wakes she is asleep again in seconds. I needed to speak to the experts for although sedated the untaken drugs include Fuzzy drug (Keppra) as Julie called it, another anti-seizure drug clobazam and more importantly Julie’s steroid Dexamethasone haven’t been taken since late on Tuesday night, I ‘know where we are’ so I’m not sure missing the drugs makes a difference now but I don’t want to be in a position where I’m ever accused of not administering Julie’s drugs, some of them are now clearly non-essential, her calcium tablets for example but it’s not for me to decide what is withdrawn if anything. I called the Macmillan team explained the situation and sought their advice, Jayne wasn’t available but their triage team said they’d check it out with Jayne and inform the community nurses, the view is the Dexamethasone needs to be in her syringe driver now but the drugs already in her driver should cover the main symptoms. It was also decided that we should no longer put Julie through the trauma of hoisting her out of bed for the commode or anything else if she woke, effectively she is totally bed bound now.

I’d spoken with  Hannah earlier in the week and she wanted to come and see or just sit with Julie, lol there are two huge bags of Pom-bears here for her too, I went to collect her, Maureen is with Julie, she’s never alone, one of us is always in the house with her or close by. It’s lovely to see Hannah, Julie barely wakes she’s so out of it, there’s something about each visit now, it’s like you can sense the finality of it all now, despite this Hannah say’s she’ll be back next week, always the glass half full or is it a coping mechanism, I can’t believe how strong a bond has been forged between these two.

Early afternoon Viv from goggle box contacted me privately to ask how Julie was and to tell me Eve (who was having phone problems) wondered if she could come and visit Julie again, again another amazing bond of friendship, I explained to Viv how poorly Julie was and Eve being young I explained or rather asked how Viv thought Eve would cope knowing ‘how close’ (to death) Julie now is, it’s hard for the older generation but we can’t assume how anyone is going to feel, I’d rather check, I did say Eve may find solace in spending time with Julie but Viv would know Eve better than me, next thing Viv messaged back asking if around six would be good, sure enough Eve came and Julie ‘rallied’ and as soon as Eve left Julie zonked out again, I’m beginning to get a complex! For ages of an evening I’d sit and watch Julie’s chest rise and fall, it’s certainly shallower breathing than it has been previously.

Thursday Evening and Celia, a dear long-standing family friend who lives close to Maureen has come up for an overnight visit, it’s been a busy day. I’d popped out to buy some food and lo and behold when Celia turned up she arrived baring carrier bags full of food too! I’d just laid out a mini buffet for us to pick at and had warmed up a couple of items too. Suddenly Julie woke, I mean woke! She wanted feeding and drink and she ate more in an hour than she had in the previous week! After a lovely evening we all headed for our respective beds, I haven’t mentioned it before but a while ago Julie had cried because we can no longer sleep together, she loves her cuddles and whilst we do kiss and hug daily overnight the closeness that was because hospital beds are singles the closeness of an evening had disappeared. I had a bit of a brainwave; if I took three of our dining room chairs and lined them up close to Julie’s bed and put my blow up mattress on top of them then I would be the same height as Julie and adjacent, close enough to hold hands. One small glitch, the mattress is wider than the chairs so nothing supports it and that’s the section closest to the bed, hmm a roll or inch too far and I would be disappearing and landing on the floor! I’ve always said “What Julie wants, Julie gets”, this is no exception, and I’d have to sleep carefully.

 

Friday arrives and I went into work, I’ve already had a discussion with my boss and explained I’d been told Julie has just days remaining, he kindly told me to do whatever I needed to do and the company would support me. When I got home our Doctor had been out and re-evaluated Julie’s drug regime and the nurses had fitted Julie with a second syringe driver, they have now added dexamethasone to her second driver. There was still no instruction on the other drugs. Jayne had called too and she was coming out Monday, she’s also arranged for the Hospice consultant to come and evaluate Julie the following week, Julie had on a previous visit been teary talking to Jayne about the hospice, she wants to go in to give Maureen and myself a break! Still thinking of others even at this stage, the reality is a) The consultant is coming out to evaluate her treatment and drug regime not to assess her to go into the hospice and b) she is as cared for at home as she could be in the hospice and as crazy as it seems it would be a bigger burden on Maureen and myself if she was in our hospice, there are more needy patients for the hospice’s services in house.  We are supported here at home by a once a week visit by a service they supply called ‘Hospice at Home’ who will and do come and sit with Julie whilst Mum goes out, it’s four very valuable and gratefully received hours of respite. I mentioned Monday’s conversation when it was decided we need more night sits than the two we are currently getting, I had a second on the Tuesday night, this time supplied by the hospice team and Friday night I have another. The sitter does just that, they night sit Julie so I can go to my own bed, most bring a kindle or a book, If Julie is awake and wants to chat they’ll chat, tonight sit is going to be a quiet one Julie is back to full on comatose state. The one thing this team cannot and will not do is administer medicines to a patient, tonight is no different so I told our sitter in the very unlikely event Julie wakes to call me but as she is off her meds its unlikely either of us will be disturbed. Wrong! At three a.m. there is a knock at my door, Julie has woken and mentioned she is short of breath our sitter says “She mentions she has an inhaler?” I’m on my way downstairs having tugged on a pair of Jeans. I found Julie’s inhaler and gave her a couple of puffs on it. She seemed disturbed so I sat with her for a while to see if she’d settle, she started to sob, I asked “what’s wrong hunny?”, the response is a question I’d been faced with once before with my dad,..in the sobs Julie asked “Am I dying?”… It’s heart wrenching to hear a loved one ask and in this case can I really be so cruel to give her the blunt answer of yes? Ask yourselves what would you do?.. I chose as I did with dad to explain that we are all dying, I added “but hunny you know you’re very, very poorly don’t you?” in between the sobs came a very teary “Yes”.. I grabbed a tissue, wiped her eyes and held her hand, “you do know we are always with you don’t you?  Maureen and I won’t leave you alone”, she squeezed my hand, her eyes had remained closed. I sat with her for forty-five minutes until it was clear she had gone back to sleep, I whispered to the night sitter, see you at 6.45, they leave for seven fifteen and I like to do a mini handover. I really didn’t want to get up, what I would do for a lie in, I cannot remember the last lie in I had…

So our night sitter gone and it’s just Julie and I until Maureen comes down. I made Julie a drink, her thirst was back! I sat next to her bed, she’s gone weak and we’ve already had one cup of cold drink end up in the bed with Julie so we hold her drink cup and she drinks from a straw now. She took a sip and despite Julie having control of her intake she holds her hand up to indicate enough, bless her she’s extremely confused now. I removed the straw and put the cup down and held her hand, she broke down in tears again, again as I did in the middle of the night I asked “What’s wrong hunny?” I got the same question asked of me “Am I dying?” This time it hit me, I started to cry, I knelt on the floor next to her, our heads close together, I still cannot say the word yes, through my own tears holding her hand I just repeated, “You’re very, very poorly hunny, you do know that don’t you” she nodded her head, I am absolutely devastated, devastated because I know how close we are to her dying, devastated that it's upsetting her. Some of you are saying she has a right to know, maybe to make her peace with her maker but Julie is not religious, she’s already told me she wants a non-religious funeral service. On top of this I know deep down Julie does know she is dying, she’s known for two years and seven days to be precise, at best her questions are an attempt to know how close she is to death and I truthfully cannot give her a date or time, no one can… She went back to sleep.

Sunday 23^rd and amazingly ‘Superwoman' is awake, lively, demanding breakfast and she’s wide awake, we are having the bizarrest conversations, I’ve already explained some of them in the last blog, at times now the stuff is so funny its hysterical at times and it’s a job to keep our faces straight. Early Sunday evening Julie’s dad calls, these are tearful and very private moments we tend to step out of the room usually but today Julie insists I stay. It’s heart breaking, I’d answered the call and stepped into our lounge, I'd previously  warned Bob, Julie’s dad how ill she was, I’d told him earlier in the week that if he wanted to see Julie, now was the time, I warned him things were not much better and the medics view still remains just days, Bob is upset as you’d expect, I was shocked for him to tell me that he’d asked a close relative to bring him over, everyone knows this is going to be the last visit, I was totally aghast to hear him say the person concerned refused on the grounds it would be too upsetting for them!! Sorry but whilst I tried to keep my counsel on certain things, this is without doubt the single cruellest act I’ve heard of, to deny a father the chance to see his daughter one last time, I’ll stop short of naming them and this hasn’t been shared with Julie, she would be devastated. I took the phone into Julie she has it on speaker nowadays unable to hold the phone, she sobbed to her dad that she’s not good, “I’m not good at all Dad, I’m frightened”, this conversation is painful, then to confirm what I already knew (that Julie does know she’s dying) Julie said as she sobbed “Tell our Mick (her brother) to get over here fast or it will be too late” She sobbed “I can’t carry on end the call, I love you dad”.  I took the call outside again and apologised to Bob, he’s distraught, I feel so helpless I cannot leave Julie and even if I could because Bob would need to be back home the same day because Julie’s mum is ill too it would mean 720 mile journey for two round trips, it’s too much and it’s not my responsibility, Julie is..

I received a call from another family member that night explaining they’d too been told that Bob wasn’t going to be able to come over, I cannot break this to Julie, it will destroy her, it’s yet another burden to shoulder, as if I’ve not got enough to worry about already.

On Tuesday Jayne came out with the Hospice Consultant and Julie was quite lucid, very teary though and being apologetic for it, the consultant told her not to apologise as this was an emotion that was outside of her control now and therefore she owed no one an apology. The consultant confirmed 'we' were all doing everything for Julie that could be done, there was a moment of humour, I'd left the room whilst Julie was being examined and came back in to overhear a summary of what had been discussed, one that included talk of "seeing if we can get you an improved hospital bed but we're not sure at this stage if we'll be able to get you one", I asked "what sort of bed?" The answer from the consultant was "Oh you can get beds that tip the body to an angle, it takes some pressure off just raising the head so it makes it easier to swallow", Oh OK I responded, reaching for the bed remote, I pressed one of the buttons "What a bit like this one?" as I raised the top half of the bed and lowered the bottom half! I laughed as they just stared at me! Jayne our Macmillan nurse smiled and mouthed something similar to "you smart arse" and said out loud "Well, we never realised this bed did that".. It's good to be able to laugh at times like this.

On Thursday this week it was confirmed that Julie’s first husband George has stepped up to the plate and is to bring her dad over this Sunday (30^th August)! I’ve always got on well with Julie’s original in laws, they’ve at times shown incredible kindness in actually making me feel part of their family, June, also Julie’s best and longest friend has given us over nine weeks of her time since Julie’s diagnosis, George has gone above and beyond with this gesture, so much so it moves me to tears as I type this.

Friday and 28^th and I am totally confused now, despite the whacky conversations we are having with Julie she has been and continues to be as bright as ever, she ‘clearly has not read the script/rule book’ she is giving no indication that she is going to give in to this, she’s not making any declarations to continue fighting either. The worst at the moment is the clear confusion, sleeping slightly longer than usual and having a much reduced appetite but other than this she is battling on regardless. It’s very much a mixed blessing, It is draining on Maureen and myself and I have to say Julie’s quality of life has deteriorated further in many aspects including more dignity gone, because we cannot hoist her she lies on a pad similar to a child’s nappy, she won’t be out of her bed ever again, she suffers the daily indignity and pain of being rolled to be washed and to have her bedding changed, this can be up to five times a day now, this is no way to live, early this morning as we lay side by side she sobbed and told me she wished she could end it all now but an hour later she’s ‘demanding’ porridge for breakfast’. I’m not sure if she is ‘holding on’ to see her dad even though she’s clueless to his imminent visit or what, I’ve previously told her that despite believing she should ‘let go’ now that ultimately this is her decision and whether I agree or not she has my total support until the very end of her Journey. The dilemma I have remains per my comments in the last blog and my work, I cannot just sit here waiting for Julie to die equally I need to be with her, I chose to go into work on Friday for a few hours in the afternoon, my emotions are in tatters, this rollercoaster is not for stopping and letting me/us off yet, all I know is there is no happy ending here.

 

 

 

There is No Respite

You WILL need tissues…

 I explained mid-way through the last blog that Julie has taken a turn for the worse, I’ll explain in more detail across this and the next blog but to reassure as I sit here writing this live ( 09.50 Thurs 27^th August) she is ‘comfortable’ in her bed. The blog will be real time by tomorrow latest.

Friday 7^th of August and we have Julie settled back into her comfy bed with its airflow pressure relieving mattress, we’ve got visitors again tonight, Tara and her partner Pete are back again for their second visit in three weeks, both are amazing in the support they’ve shown us as a family, I met Tara for the first time on Xmas day and I met Pete for the first time two weeks ago, we’ve bonded incredibly well, it’s sad that we’ve only just met. Tara and Julie worked in the healthcare sector together so it’s been a big help to have her support in helping us care for Julie, Maureen is amazing and it’s like Julie has her own personal gourmet chef and patissiere though Maureen goes beyond that, way beyond, she’s slight in build and is 'no spring chicken' and  she just gets on with it but to me I see a slight and slightly frail lady who shouldn’t be attempting to ‘hoick’ Julie up the bed even with me in attendance, she feels put out that I deny her doing such tasks but I truly fear for her health, we’ve both lost Henry this year, we are both going to lose Julie, I do not want a hat-trick of deaths so I make no apologies for my actions. Tara is more experienced in moving people in their beds plus we’ve been able to hoist Julie as it’s needed to get her on the commode or in and out of her chair.

Talking of Maureen, as amazing as she is and she might say I am we were never destined to live together all of our lives, we have different ways of operating and we have different personalities and, when you’re pretty much together 24/7 and with a terminally ill patient to care for things can become strained, mum is still trying to come to terms with Henry’s loss plus she’s abandoned her own home and life in Warwickshire for almost twelve weeks to care for Julie now, thank goodness she has amazing neighbours in Heather & Dan who safeguard the house for her. She does need to go home though a) for a break, b) for us to have our own cool off period and c) she needs to handle her post etc so it was agreed for her to go home Friday and whilst I suggested she came back Monday, Maureen was adamant it would be Sunday evening.

Julie is excited to see Pete & Tara especially as Tara has brought Grimsby fish with her! Julie knows her fresh fish and she’ll be eating it this weekend. Tara had also brought a spag bog with her! Friday night was quiet,   

Saturday morning and it’s my birthday, I started to open all the post aka my birthday cards then Tara ‘rebuked me’ for keeping my birthday quiet, lol it’s just another day to me, on hearing Tara mention my birthday, Julie got really upset, she had forgotten it. I told her, her being here was my birthday present plus only recently as I’d dropped my brand new phone and shattered the screen on it she had kindly bought me a ‘man bag’ and that too was present enough.

We decided to go out for lunch though, we were going to New Brighton after the previous aborted attempt though in its own way this almost didn’t happen!

Tara & I got Julie into her wheelchair successfully, I called for a Taxi, we need a large cab these days a model called a Peugeot E7 can take a wheelchair as large as Julie’s. I called to book one for thirty minutes time and I needed to book a return too after the farce of not being able to get back last time, the response from two cab companies was nothing short of appalling, both saying I couldn’t just call and book one or a return, one suggesting best to call when I needed it and if they had one available they’d send it! The upshot is despite being told none were available in the end we set off for the town centre thankfully only 300 yards away to a taxi rank outside Asda where there were 8 yes EIGHT E7 cabs on the rank two of which carried the phone number of one of the companies I’d just done battle with! I’m sure, knowing me by now you’ll be aware that formal complaints have been submitted to the council and the cab companies and I am still seriously considering whether to push this further under the disability discrimination act. As I explained to the operators who refused to take even an advance booking (on the grounds they might not have any 7 seater E7’s available then) that had I wanted to book a seven seater for an airport run they WOULD have taken the booking, by definition discrimination against a disabled person, I explained on this basis a disabled person would not be able to plan an evening out to the theatre, the movies or for a meal for they might end up stranded! It’s simply appalling.. Any lawyers reading wanting to make a name for yourselves?....

Anyway, we got to New Brighton, we had a great meal and time in The Marino Lounge Café but per usual Julie got fretful and we came home slightly earlier. Pete works out a lot and he tackled the hill with Julie to the train station, soon we were home, Julie was wiped out.

Most weeks now Julie’s anxiety and agitation seem to outstrip the controlling medicines doses, bizarrely her pain management seems to be constant. Over the coming week on speaking and meeting with Jayne our amazing Macmillan Nurse it was agreed that Morphine and another drug called Levomepromazine would be added to Julie’s Medazolam in her syringe driver, the dose of morphine even as I write this hasn’t moved up. We also agreed that following Julie’s last hospital admission that these are just too stressful for her to contend with and truthfully nothing more can be done for Julie now, we need to keep her stress free not have her fretting about hoisting on to stretchers and blue light journeys. Julie’s medical file here at home contains all her drug information and with these let’s call them ‘end of life’ drugs there is a chart that confirms what the daily dose should be but it also includes a range where if the Nurses or other medical professionals believe an extra dose is needed to top up the existing drug level then they can without delay and don’t need to consult a Doctor at the time. Jayne & I agreed that if Julie had another seizure not coming under control that by all means I should dial 999 and the attending paramedics can administer a top up dose under the same ‘rules’ Well that’s the theory, the practice as you’re about to hear is a different ball game…

Throughout the following week (w/c 9^th August) Julie was showing further signs of deterioration, she comes out with the quirkiest of things, it’s a combination of the tumour on her brain and her medication, the one morning she told me she was uncomfortable in bed I asked “Do you want me to move you (up the bed) hunny?” “Yes please” came the response followed by “Can you make me heart shaped please?”… I’ve also been asked to “Park those two cars by the bottom of my bed on top of each other please”, there are many more but bless her; this is just to give you a flavour of what is occurring. Her deterioration to those that see her less frequently such as our night sitters or Jayne or friends & family is more obvious than the slow daily creep that occurs and is perhaps less obvious to Maureen & I, we do notice the change though, these days it is significant.

Maria travelled from down south, I run a private face book group for Family and had informed them Julie was ill, Maria was here a few days later for an overnight stay, Julie truly appreciated the gesture and seeing Maria as did Maureen and myself.

I messaged Bob & Emma, I was going to suggest if they wanted to see Julie/Mum now was the time to be visiting… By chance they had already decided they’d make a flying visit on Sunday (16^th). It’s difficult for friends and families from afar but I’d rather everyone knew just where we were with Julie, the last words I’d ever want to hear after the event from anyone friend or family are “We didn’t realise things were so bad or so close to the end”. I’m ‘fortunate’ I see Julie daily I know it’s going to hit me like a ton of bricks when I lose her I don’t think every close family member or those who have been close friends appreciate the grief they will have to contend with on Julie leaving us, it’s difficult, I recall when my dad was dying and my first wife hadn’t been able to see him in around four weeks, at that stage he’d gone skeletal and I told her whilst I was happy for her to see dad anytime for she doted on him that his physical appearance had changed so much it could be distressing and sometimes it’s easier and it’s better to remember a loved one as they once were not what medicines and illness have turned them into, from my perspective Julie is and will always remain my Julie whether it was the fun loving prankster who certainly gained admiring glances when we were out or as the bedbound woman she is today, my love for her is unconditional.. Anyway back on topic..

Saturday afternoon and Julie started to have a seizure, the most recent ones are presenting themselves in her right arm from her shoulder to her fingers, we have a tablet that we drop under her tongue that is meant to alleviate the symptoms and relax Julie, it’s a far lower dose of Lorazepam, this is the drug they used to sedate Julie in hospital you may recall. Over twenty five minutes three tablets never touched the seizure. I called our GP out of hours service explaining about the need for someone to get out and sedate her with the Medazolam, I was told a Dr would call me back, within five minutes so just on thirty, the seizure faded as fast as it started. I called the out of hours service and ‘stood down’ the GP call but five minutes later he called, he suggested next time it might be quicker to call for a paramedic. Little did I know just 18 hours later I’d be doing exactly that. Sunday morning and Julie went into seizure, this one was slightly different, it was causing her pain and at the same time line as yesterday three tablets was clearly not going to bring it under control, I dialled 999… Within two minutes there is an ambulance here, despite explaining the need to give Julie a ‘hit’ of midazolam he was having none of it, the seizure was still occurring and he was going to blue light her into APH again. There is no point in arguing the toss at this point so I get Julie into her sling harness and operate the hoist and we get her onto their trolley. Maureen went in the ambulance with Julie, I’d love to but I’m more use if I have my car to hand. I gave the paramedics the Do Not Resuscitate form that Julie had requested be in her file since her blood clot hospital visit. From an educational point of view, a Doctor will complete the form after discussion with the patient and family. Either way the outcome can be distressing, sometimes in resuscitation patients can suffer broken ribs and horrendous pain, without this document paramedics are legally obliged to attempt resuscitation and cannot/will not stop if family members look on seeing their loved ones in pain, this DNACPR form is clear and cannot be over-ridden by paramedics or Doctors, equally I can only imagine the stress of seeing a loved one in this situation and being upset that no one is doing anything, in this instance it is Julie's will and I support her decision on this. In Julie’s case right now such treatment would be cruel and pointless other than to keep her alive in pain and suffering, knowing she is close to death now these are the harsh realities of being ‘this ill’…

The paramedics blue lighted Julie in, I followed shortly after (remember do not chase ambulances under such circumstances) I gathered Julies box of medicines and headed for A&E. The seizure lasted 75 minutes before it subsided!.

I’m not going to labour on this visit for it’s fair to say I’ve seen the best of APH and this day I witnessed the worst, yes I’ve already raised it with Jill Galavani the Nursing Director, she was ‘incandescent with anger’ at what I shared with her, these are not the standards Jill expects her team to work to. Sorry I have to interject with some live humour, I’m sat in ‘Julie’s bedroom’ typing away, I coughed once and this voice say “You’re noisy you are” lol I said “Sorry hunny, why am I noisy?” response “I don’t know you are, sorry..” I asked “why are you sorry?” response “I don’t know, what are you having for breakfast?” lol its all so abstract, not worrying and in a quirky way it makes me smile..

So back to APH A&E department, Julie was finally sedated and an ambulance was called to get her home. At home as we moved Julie from the ambulance crew’s trolley  to her  bed her syringe driver tubing was caught and accidentally the needle was out of the insertion site (I say needle it’s very hard plastic). Julie was sleeping by now and I called the community nurses out to re-site the driver, as a precaution because of issues at the hospital with Julie’s syringe driver needing to be refilled there Angie and Terry today’s Nurses did in my view the right thing and emptied the driver contents and replenished them their selves.

On Monday Jayne our Macmillan Nurse came out I explained my frustrations at the traumatic day Julie had, it could all of been resolved in minutes if only the paramedic had been prepared to administer the sedative. I explain I’m now torn if this happens again, hospital can do no more for Julie she needs to be comfortable at home, Carolyn the head of our community nurse team is here too preparing Julie’s syringe driver, I suggested surely it would make more sense if we have a future occurrence to call the community nurses out and they know they can administer the emergency dose of Medazolam and thereby ease Julie’s suffering, the three of us agreed this was the best way forwards now. These are tough decisions and it’s trying to work out what is best for Julie. The A&E Doctor had asked me what if any investigations she wanted us to conduct (for Julie is all but out of it during here seizures) after I described all of Julie’s symptoms for in addition to the seizure she was complaining of shortness of breath, this is how the earlier blood clot was found. The harsh reality here is nothing will save Julie and putting her in a hospital bed where she doesn’t want to be for more invasive explorations and to what benefit and end? I suggested what would be best is for Julie to be sedated as she should have been at home and then return Julie to her bed at home, the Doctor agreed, I bent down close to Julie holding her hand and asked if she was comfortable with what we’d discussed, I explained it all again to her, Julie was accepting of what we’d agreed.

To add to the tension, Emma, Bob, Chloe, Abbie, Olivia & their cousin Adel

 

were on their way, should they come to the hospital or to the house, it was a close call and they came through the Birkenhead tunnel just as Julie was being transferred to the ambulance men’s trolley, I suggested they wait by the house and fifteen minutes later they were all reunited, these are such emotional times in particular for Emma and Julie, it’s truly heart-breaking. Adel bizarrely asked for a Teddy to cuddle, the house is full of them so I found her one and told her she could look after him whilst she was here. Julie although appearing to be asleep (this is a particular party trick of hers – beware what you say in her presence even if she appears asleep for an hour lol!) Julie told me to fetch the Stieff Bear Collection down, she had tagged up all the bears back in hospital, they were to be grandma’s gift to them after she had passed away. I queried her timing but no she wanted them to have them today. I went upstairs and brought the large bag containing them all in, I took one last look in the bag, these I’d bought for Julie for special occasions in our lives, it was going to be hard handing them over and yes, again I cried but at least I was on the top floor of the house. I dried my tears and headed downstairs and we fulfilled Julie’s last wish and handed the girls the bears all with a personalised tag. The girls all had huge smiles and thanked Grandma, I looked at Adel with the bear I’d ‘loaned’ to her, bless her I couldn’t send her home bear-less so she went home with a bear too.

The kids had barely left & Julie was pretty much out for the count immediately and for the next four days! She slept at least 22 hours a day.

On the Monday evening our Marie Curie Nurse/Night sitter who had been with us on the Friday night before on seeing Julie asked for a word with me in our lounge away from Julie. He explained that the obvious deterioration in Julie in just four days tied in with his experience in the palliative care sector brought him to the view that Julie has just days left…..

I’d already been working on the basis of four to six weeks because of the rate of decline, but hearing these words hit home. He just suggested I prepare myself for the worst. It wasn’t the easiest of conversations but it was necessary, I’ve never dealt with death this closely and intimately before, what do we need to do when the time comes? Yes it’s a given that you need a Doctor to certify a death but then apparently my next call will need to be to the community nurses who will need to remove the catheter and the syringe drivers, then it would be time to call the funeral directors, sadly this is the harsh reality of where ‘we are’ / ‘Where I am’.. I went in to the kitchen where Mum was, it was obvious that it wasn’t good news, we’re not particularly tactile but we hugged.. Maureen headed to bed just giving Julie her kiss goodnight first. I went back into Julie’s bedroom and held her hand, she looks peaceful, I don’t want to leave her but the whole idea of the Marie Curie sitters is to give me respite, I stay for five minutes longer then I am heading to bed, I’m not going to sleep much tonight, my head is in a spin… It was also suggested we needed more support than the two overnight sits we were having this week, a submission would be made to add more.

I find it very difficult to be away from Julie right now, I know this situation can change in a matter of hours; I need to be with her as her journey moves on, she’s never alone but she’s my world for my own sanity I need to be with her no matter who else will be. It’s not so bad at home, ‘my bedroom’ is immediately above Julie’s now bedroom, I can be down in seconds, my dilemma revolves around work, It’s a 90 minute drive in of a morning, it’s a forty-five minute drive home at night, it’s 43 miles away, if I get a call will I make it home on time? Equally I’m being told days but what does that mean? We are only four months into the holiday year and I’ve already used half of my holidays and my employers have been supportive with some compassionate leave, I’ve even taken some days as unpaid leave for I know I’m going to need a holiday when this chapter of our lives closes. What if I take the balance of my leave now and I reach the end of it and Julie is still fighting on? I’ve still got bills to pay, I cannot be the only person in the world who faces this additional dilemma, I’m sharing it not out of a cry for sympathy but it gives you an insight into the additional pressures someone faces on top of the daily uncertainties, Julie’s situation is as she described before almost like a daily game of Russian Roulette, the tension is so, so cruel on everybody not just those of us here at Shute Manor.

For the next few days Julie has barely woken, she hasn’t eaten, she’s barely drank anything either, she has a catheter in and the night bag hangs off the edge of the bed frame, in three days there is barely 200ml of fluid in it, it doesn’t take a rocket scientist to tell you lack of food and in particular fluid causing dehydration that Julie’s time is short…

 

 

Blood Transfusion

Well after the fiasco that the last blog ended with Andy contacting our GP and it was arranged for me to go in for my transfusion on Thursday 6^th August, I’d made it conditional that I’d only go in if Andy was with me, like he was going to let me go in on my own but I am so fretful almost panicky these days. Thursday morning and I’m quite forgetful now I’d already forgotten about going in to hospital. A call came in saying “An ambulance is on its way for you”, I started to fret again, “Andy I don’t want to go into hospital, please don’t make me, I won’t come out”. Andy reassured me, well he did his silver tongued salesman thing on me. “Hunny you know how breathless you’ve been the last couple of weeks? Well it’s down to low haemoglobin, you don’t want to keep feeling breathless do you?” I shook my head and I cried, “No” I answered, he squeezed my hand gently, “I won’t leave you I promise” he replied, “you promise?" I asked, he nodded, held my hand and bent over my cot sides and kissed my forehead then my lips, “I promise” I’m so emotional now, tears slowly trickled down over my cheeks, Andy asked Maureen for a tissue and she came over to wipe my tears away for me, it’s difficult for me to say this but my childhood with my own Mother wasn’t a bed of roses, we were a big family and at times she struggled to cope bless her, in latter years her own health has deteriorated and she’s needed caring for herself, my daddy and my brother Andy have been marvellous in their care of her under very trying times, until earlier this year we did our best to see Mum & Dad  at least once a month but I have never felt close enough to mum for cuddles, she wasn’t tactile like that, Maureen on the other hand as I’ve deteriorated has been here for me, she kisses me every morning and before she goes to bed, she sits here next to me and she strokes my forehead calmingly for me, though sometimes I snap “Ok, enough now, you’re doing my head in”, we laugh, I can only imagine that in full health and under different circumstances my mummy would have been here for me in the same way. Back to the reality of it, Andy saw the ambulance arrive and mentioned it, immediately in my head I went, “here we go again”.

Its traumatic being hoisted out of the bed on to the Ambulance Crew’s stretcher/trolley, interesting, I suppose it’s down to ‘Ambulance chasing lawyers/culture but the paramedics wouldn’t touch the hoist as “We’re not trained to use it”, thankfully Andy has the necessary skills and experience even though he’s never been trained to use it either… The paramedics have been here before and they’re amazed at the ramp, it makes life so much easier for them.

Whilst all this was happening Andy got a call from Mary the Staff Nurse on Ward 26, they’d had a call saying I am on my way in & to make room for me… Mary is lovely, she has an amazing smile and I can tell her affection is genuine towards me, I know Andy thinks she’s a babe and I’m certain he has a crush on her hehe, I don’t blame him… The reality is though Ward 26 is full and I have to dig my heels in, as in “Under no circumstances move any patient to make room for me, this is a ‘nice to do’ not 'need to do' Andy told Mary we would not be pleased if this happened. Mary knew the head of the Medical Evaluation Unit and the reality is this apparently is where I should be so she was personally taking my file down to MEU and the Ambulance crew were briefed to take me there not to Ward 26.

Andy followed in his car, this is a non-emergency so I know he may need to shoot off and I know despite my slight panicking that I’m in safe hands and I’ll see him shortly anyway.

In the MEU I’m warmly greeted and the team are expecting me, it’s incredibly busy in here. Once settled in to a bay it’s the usual observations, I have blood taken so that it can be matched for the transfusion, I’m ‘O positive’. I saw a doctor later on and he informed me I’d need two units of blood, the first would be transfused over two hours, the second over ninety minutes, hehe I’ll probably sleep through it, it’s what I do best these days.

Tests & observations kept coming. Around lunch time Jill Galvani, Director of Nursing appeared to say hi, how kind it was for her to come and see me. You’ll recall many blogs ago Andy was on the warpath ‘demanding’ a meeting with Arrowe park’s CEO, he’s not told you yet but.. He had his way and met with him also with Jill, there were also another four senior level people from other agencies involved in patient discharge and palliative care. Part of the outcome of this meeting has been a professional bond and level of respect between Jill and Andy and she has kindly extended that to regularly checking on how I am including this as Andy calls them hehe ‘Royal Visit’… You can always see the mix of query and ‘what is Ms Galvani doing on our ward trepidation’, then you can see the ‘Why is she visiting Julie?’ Andy always smiles with his people watching hobby lol, the reality is there is nothing sinister to the visit other than Jill wanting to say hi and to see me; we share a love of Joe Malone’s Pear & Freesia perfume. Jill informed me I was to be moved to Ward 26 later as three beds and been vacated (for the right reasons) due to discharges and she wanted me to be with ‘friends’ as in the team who cared for me for a month not that long ago, I’m grateful, whilst I’d have no qualms about going on any ward it’s nice to be going where I know people.

So my first transfusion started, they decided the easiest way to transfuse me was via a line already in my upper arm. The cannulas they slide into your wrists when they give you fluid or take blood etc can only stay in your veins for a few days, for poorly patients like me to save constantly ‘stabbing you’ hehe I’m kidding, well no I’m not, you do feel each needle insertion and, it’s a long story but I’ve few good veins to take blood from these days, often veins will ‘collapse’ making them no good for extracting blood, The line in my upper arm is different it’s called a ‘Picc line’ stands for Peripherally Inserted Central Catheter. These have to be inserted by specialists for a long line is feed through your veins until it gets to a larger vein in your or in this case, my chest. Once these are in they can be kept in for long periods of time, the nurses have to what they call flush the line once a week it has a neat little cap on it.

So, meanwhile back to the transfusion, being given the wrong type of blood can result in serious injury or even death so it’s a serious matter and two nurses cross check all the data on the paperwork and on the pack of blood, they have to record the batch numbers, the type and all sorts of other stuff, they must verbally confirm each point with each other its funny I’m not sure why it amuses me but some say yes, some say check or others hehe ‘I concur’ . You don’t really feel anything and I’m relatively sleepy anyway, the blood is meant to build up my haemoglobin levels which should give me more energy and stop the lethargy, watch out Mr Shute hehe.. By the time the first transfusion was over it was decided it was time to move me up to ward 26,  I’m almost mobbed with hugs and Kisses, I’m in just as the shift handover occurs, Mary, her face just exudes joy, hehe no wonder Mr Shute keeps bringing the team iced lollies. I’m teasing him, I’ve never minded him looking and I know he’s not going to start wandering now, lol he should be so sodding lucky with all these gorgeous nurses about – you’re approaching pension age Mr Shute! Hehe.. On a more serious note, yes I truly hope my frog prince finds happiness again one day..

It had already been decided earlier in the day that I’d be an overnight patient, just as well for it seems reserves of O positive blood are low in the blood bank so I cannot get my second top up until tomorrow morning anyway. I’m fretting for I don’t want Andy to leave me; common sense says he must even though the ward team were happy for him to stay with me for the night. I needed a clean nightie and in the end Andy made the decision, the lovely Lauren was with me in my bay and we both knew I was in safe hands, it was gone ten before he left the ward.

Mr Shute wants in with his little bit, suppose I’d better let him hehe.

It’s him here again… Sadly whilst the intention was for Julie to just let me have a waffle then for her to pick up the blog again she’s take a serious turn for the worst and it is back to me writing future blogs and finishing this one, it’s ironic for the next piece whilst I wanted to put it in, it’s probably best Julie doesn’t see it.

It had been a hard day, the days are so draining especially most mornings for it just goes carers, half hour break, Nurses then straight back into carers, one minute its 07.00 the next it’s one o’clock! Today was different for it was straight to Arrowe Park Hospital, there’s a lot of just standing around and its incredibly tiring daft as it seems, As they settled Julie in I shot up to ward 26 and saw the senior Staff Nurse Mary, yes as Mrs Shute says ‘She is cute’ but I’m a happily married man & Mary’s probably snapped up already anyway.  Mary is pleased to see me and I apologise for the earlier confusion and Mary was apologising for having no room on the ward, it’s truly no big deal but I’m old fashioned and prefer to do things like this in person. 

So all went to plan except for the blood bank being low on blood plus well its better Julie is transfused during the day. Julie is so fretful these days, very clingy, she knows she’s poorly she’s understandably scared; none of us mention the ‘dying’ word but we are acutely aware of the reality of things; things can totally turn on their head in twenty four hours now.

The transfusion went to plan on MEU and yes Jill Galvani came to visit which was lovely, the team in MEU were excellent coping well in difficult circumstances and under pressure, it seems we are a very unhealthy or a poorly nation. I know Julie is in safe hands especially on Ward 26 she’s had a restful day before she was moved up to Ward 26, on entering the ward, there is a mini stampede as the shift change had just happened, Staff Nurse Mary was heading towards us, what an amazing and genuine smile, she bent down and hugged Julie like a long lost friend, there were more hugs then the oh so bubbly Lauren was by Julie’s trolley side as she was wheeled onto the bay Lauren was on. I’m not sure what it is that Julie has but she has the ability to attract friends of all ages and status, she always has since the day I met her, the genuine love shown by this ward team demonstrates it to this day as does her newly found friend ship with Eve.

It had been a long day, Julie is still fretting and stressing and it’s getting late, I hadn’t realised just how late, the team had offered to let me stay with Julie, initially I thought I’d stay then I remembered Julie would need her overnight bag and a clean nightie I had to go home, it’s better that I leave Julie to the nursing team plus it’s not fair to the other five patients in the bay and I need my sleep, what I wasn’t prepared for was how walking into our empty home would ‘hit me’. I walked up the ramp and through the door a door I’ve walked through thousands of time, it’s a big house but it always has a ‘warm’ feeling about it. I walked into the dining room that now doubles as Julie’s bedroom, bathroom & lounge.. The emptiness of the bed hit me like a sledgehammer, I just broke down and sobbed, in that moment I knew this would be the reality one day, one day I will stare or sit by this empty bed knowing Julie will never be back in it. I made my way up the stairs to what was ‘our bedroom’ that’s become ‘my bedroom’ and cried myself to sleep, it’s subtle changes like this that have crept in over time, I need my sleep, I need to get back to focussing about Julie and not feeling sorry for me.

Friday morning and I’m on the ward early, they’ve not long served breakfast and Julie needed hoisting on to the commode, she’s afraid of the team hurting her, this is a different type of harness and yesterday in MEU without realising as Julie wasn’t quite in the harness properly one of the nurses decided to give it a quick tug, she meant no harm but the material of the harness whilst soft has firm edges for obvious reasons, pulling material in one direction against soft human skin can only have one outcome for a patient with a low threshold for pain, Julie screamed out, I had to intervene both to prevent further tugging but also to reassure and help Julie. I sometimes step in, I make no apology for this, if things aren't right like this staff need to be aware, Julie often says to me "you need to sit in the harness and be hoisted Mr Shute", to staff I'd ask you consider the impact of tugging or shoving etc... I try to stay out of the way most of the time but often Julie wants me there just for reassurance, do I enjoy sitting there with her once she’s on the commode? No not really but she’s my wife and she wants me there, it’s what I feel I have to do. On 26 I did forewarn the team just as a courtesy, I knew their level of care for Julie would mean minimum fuss and no pain. Mid-morning the latest unit of blood arrived and I took the opportunity to escape for half an hour, it’s going to be a warm day which means the ward staff will be baking, I dashed to Sainsbury’s and grabbed a variety of iced lollies (or as locals call them ‘lolly ices’) and ice creams on sticks and quickly dashed back with three carrier bags full, they’re mainly on offer so you can get a lot of lollies for your money. As I walked on the ward it was instant recognition of heat relief, they’re so grateful, I’m eternally grateful… Julie decided she wanted a pink magnum, what the lady wants, the lady gets...

Julie’s transfusion is almost finished and an ambulance has been called to take her home, again we have a stream of nurses wanting to hug & kiss Julie goodbye, it was only a short wait. The crew that turned up had been to our house for Julie before but this was prior to the ramp, they were pleasantly surprised how easy it was to get Julie’s stretcher in. Once in again I had to operate the hoist to get Julie back in to bed. It’s been a tiring two days, whether the transfusion helps or not time will tell….

 

 

 

 

 

Making a difference

Andy here,

Those that have been reading 'Fluff's Journey' might recall the issues we had around Julie's discharge & me 'demanding a meeting' with the CEO of Arrowe Park Hospital Well it happened and included senior level external agencies including a director from the Clinical Commissioning Group and The Director of Nursing for APH Jill Galvani, the meeting was an incredible success and it's bringing changes to discharges. The team asked would Julie & I video a summary of events so that the video can be used to train staff, to also understand the patient & family experience, we were more than happy to assist. here is the video, excuse my fifteen chins. It seems due to a technical issue there are sound problems when played on mobile phones, it's all good on a tablet, PC or laptop. Check it out. http://youtu.be/J3JEtqhWvP8 - The moral to the story is don't just whine about poor experiences in life be it retail or health, put together a calm and rational overview of events & try to change them, you'll be surprised what you can achieve.

I'd like to personally thank Arrowe Park Hospital's Director of Nursing, Jill Galvani for facilitating the meeting so that I had the opportunity to present to not just CEO David Allison & Jill but a full team of Key 'Stakeholders' including Macmillan Nurses and  all committed to and are already delivering positive change following this meeting. What was Key to me too was it's easy for any large organisation to 'listen' to a complaint but then just move on with business as usual. APH  like any hospital cannot please everyone all of the time but complaints make better headlines than praise. What truly impressed was bringing in to the meeting a lady called Lorna Quigley,  who is Director of Quality & Patient Safety for Wirral CCG (Clinical Commissioning Group)  Most of us do not understand the hierarchy of how the NHS works, we just expect it to but the government does not just hand out wads of money to hospitals they and other departments are paid for the services they supply. Lorna’s current role at the CCG involves monitoring the quality of services that are commissioned by the CCG against agreed standards, responsibility as Executive Lead for Safeguarding Children and Vulnerable Adults and is also the lead for infection, prevention and control. Lorna was clear that her attendance at the meeting was to understand what my concerns were and to understand what the CCG were getting for their money, also to ensure effectively that everyone upped their game afterwards. The inclusion of the CCG to me says APH's team is progressive in terms of accepting and recognising when things aren't right and doesn't 'sweep the issues under the carpet' in fact the exact opposite in our case, they have been keen to embrace significant change for patients and I believe for the NHS in turn this improves staff moral, it gives us the patients a better experience AND the proposals put forward will deliver significant financial savings and improve efficiency. The video doesn't include the full detail of my presentation (that was an hour long - the video is 'just' 15 minutes) to this key group but suffice to say I came away knowing changes would be made and that Julie's battle with fluff hasn't been in vain, so confident are the teams involved that they will succeed I have been invited back to check on progress in September and also beyond that. My wife's story is inspiring this is just another example of how she has selflessly helped others on their journeys.

Happy Anniversaries

Before this all began...

Well August the first is fast approaching, its a busy month, Birthday's galore, we've got Abbie & Chloe's, they're ten this year, where has the time gone? It's Andy's, It's Also Aaron's and I've probably forgot some more, it would have been Henry's too bless him.. If I've not mentioned you I'm so sorry, I don't even know what day of the week it is often these days, It's a combination of the drugs to ease my anxiety and pain plus Fluff! I can feel him 'marching on'.

It's another important month in terms of milestones... 12th August 2013 was the beginning of the end, the date of my first tumour operation, The 20th was the day I was inadvertently 'told' I'd got cancer, The 21st The day my world came crashing down, the day I was told, "You will succumb to it", the 22nd Was the day I found out that I was to start Radiotherapy & Chemotherapy. It's been a busy two years! 3 tumour operations, a lot of sadness and suffering but a lot of joy in these two years, I never dreamt I'd be here now. In the early days I refused to be told how long I had but I'd barely been home a week and had discovered what Andy had already read up on but was keeping to himself, namely that 14 Months survival it was going to be, 'if I'm so lucky' yet I'm about to 'celebrate' the bizarrest of anniversaries, my second. Fluffs done his best to try and rob me of this and I know I've 'just made it' but sod you Fluff, two years it will be!

Back to the reality of real time. Birthdays, Cards & presents were always my domain, I'd hand make cards, I'd spend hours making those cards so special for everyone close to me, sadly I've made my last greeting card, *Sigh.... It's these little things that fluff has robbed me of most.

Health wise, truth be told I am not good, I am fighting but I also know I am just existing now but I still want to be here I won't give in yet, I'm not sure I ever will, logic says I should end my misery but a combination of fear and not wanting to lose Andy, Maureen, my children, grandchildren and friends, I know in some cases holding on is causing distress to Andy in particular, he's walked this path with me he, copes with my deterioration, my loss of movement, my independence, he sleeps on the floor besides me most nights on a blow up mattress, I wake him most nights to be moved or for a drink or to check my catheter, to give me an extra blanket, to get me out on to the commode, its a two man job at the best of times but on the odd occasion he's rolled me into it and hoisted me off the bed and on to the commode on his own. He's then well to put it bluntly wiped my (oh so sore & tender) bum for me got me back into bed and then had to go and empty an often smelly commode then it's back to bed for a few hours before Maureen takes over as he has to go to work. Maureen too, I know she will be heartbroken when I've taken my last breath, we spend more time together than most married couples do and I realise at times I am hard work, very hard work. I almost feel like I should apologise for fighting on but this desire to survive is built in to me and I cannot do anything different, one way or the other though people close to me will end up hurt and in tears..

Talking of health and tears and fluff and August. August is just hours old and Fluff is at me again via my catheter! A week earlier i'd had problems, the nurses tested me and on top of everything else I have a urinary tract infection that has to be treated by an antibiotic called cephalexin, the pain of the infection makes you feel like you are peeing broken glass even with a catheter in, the tests from the previous week also revealed I have an underlying infection abbreviated to ESBLs, IF this thing goes rampant I probably won't make my second anniversary, I'll leave you to google it. There is a chance I have what they call a colonisation of it, basically I could be a carrier and not be infected or affected by it, don't worry unless you were, hehe washing your hands in my pee you won't contract it from me... In terms of my spirit its one thing after another, this really drags me down and makes me tearful. Andy had been informed by my GP about it, he knew the day before me, he'd thought overnight about whether he should tell me, he knew how I'd react and he was right... On Saturday 1st, Andy sat down with me and explained ESBLs to me, "So that's it, it's going to kill me?" these were my only thoughts, Andy reassured, "No, it's highly unlikely you'll even know you've got it, to be honest I knew you'd fret and almost never told you but you have a right to know",  he went on to explain how or rather what he thought would probably be the cause of my demise but let's not labour on this.. My head struggles with rationalising things these days. Back to the infection and the catheter, Its early on the second and by 09.00 I've had three teams of nurses out to me during the night, I think Andy has surrendered the idea of sleeping 'tonight'.. The catheter was blocked then seemed unblocked, then a while later its not working! The second time it's flushed again and it's flowing 'fine', within half an hour though it's obvious it's blocked again, I just break down and cry, I am so tired of these blockages and I'm frightened, I do not want the tube changing for there is an increased risk of infection, this scares me, I am at my wits end by eight its blocked again, at 09.00 it was unblocked and flowing really freely as in I peed almost two litres in twenty minutes! It's all pain, it's all stress, it all has me asking Andy to make the pain go away by me asking for a small dose of morphine, this is on top of the morphine in my syringe driver, it's referred to as a top up dose. By mid morning the nurses are back out and I am resigned to the catheter being changed. Fluff, leave my lower bits alone! Its bad enough you're in my head without causing me problems elsewhere!

I've got a surprise! Andy told me on Saturday that Eve from goggle box wanted to come back and see me on Sunday! She had kept her promise to come back to talk vintage to me, this makes me smile. I've got a surprise for her when she comes IF she's not offended by it. She and her boyfriend Josh are calling before they drive down south. I told Andy to go raid my wardrobes for all of my Cath Kidston dresses and my Vivien of Holloway Collection, all vintage style dresses. Eve is so passionately 'Vintage/Retro', I cannot get in to my dresses any more so I'd love it if Eve can fit in to any of them so she can choose a couple. Andy cobbled together a stir fry with a variety of dipping sauces as Eve and I chatted and she admired my dresses, Andy had utilised the hoist as a giant coat hanger, Eve chose a few and she popped up to the green room to try them on. Success! she got in to two including one of my Hell Bunny dresses, Eve was thrilled to accept the dresses and a cardigan, I am so delighted, I told her I was as jealous as hell, as green with envy as the one green dress she wore! I miss being girly and swishy. There was one dress that never came down stairs, I already know what I am going to be wearing on the day of my funeral even if it has to be modified, hehe most who know me well won't be surprised to hear this revelation.. It's time to wave Eve and Josh off, I'm watching them from my bed as they go, I've told them "Hands off Maureen, you can't have her", everyone loves Maureen, everyone want to adopt her!, well she's mine and no sorry you cant have her (yet)....

I'm going to pass you over to 'The Lord of Shute Manor' hehe, he'll only sulk if I don't let him throw in his five minute's worth hehe.

She may be dying but her bloody cheek isn't lol, in the last week since they've tweaked Julie's syringe driver drugs, a little bit of the cheeky little Miss with a wicked glint in her eye has resurfaced, I've missed it, the odd laugh and her sharp wit, they're all for the memory bank now.. The downside is mine and confirmed by medical opinion we are sadly at the stage where Julie's time is measureable in weeks not months, it's a harsh reality for me and as Julie's mood is so good I have no desire to destroy it and all she'll do is shrug her shoulders and probably see it as a challenge..  I am about to blow the smile right off her face though and I am dreading the conversation, the expression it never rains less it pours could not be truer...

I've had a call off our GP Andy Lee, You might recall I mentioned Julie's blood tests in hospital showed her haemoglobin was slightly low, the A&E Dr wrote to Andy and asked he have follow up blood tests done. He did and now it was bad news time, Julie's Haemoglobin count was bordering on critically low and she needed a blood transfusion... Before I asked a few more questions, I felt from recent discussions Julie was not going to go into hospital for this without a fight. I asked "how low are they Andy?" "She's at 81, she should be at 130-140. Will you call your Oncology team and arrange for them to transfuse her?" I just responded "I don't think she'll agree to this Andy, she's had enough of hospitals now, I'll try and persuade her but I'm not hopeful and yes I understand the consequences if she declines" The next conversation is when the dawn of realisation comes in. "Let me know if the answer is no, I'll have to come out and examine Julie and document her refusal and we'll have to let nature take its course"...  I drove home running the conversation through my head, it's a salesman/negotiator's thing pre-empt the conversation ahead, understand the objections you are likely to hear and have solutions ready if possible"..  It was a bloody lonely and long drive home...

I walked in the house Mum, Mother, Maureen was sat in the recliner chatting with Julie; I gave Julie a kiss and a hug, I froze the TV screen and I stood at the bottom of the bed... Calmly I explained the conversation I'd had with Andy Lee in so much as You need a blood transfusion and here is why.. "Will it be done her at home?", here we go... "No Hunny, it has to be done in hospital, I've got to ring Clatterbridge in the morning, your count is critically low and it's this that has been causing your shortness of breath, a transfusion will make that go away".. Well knock me down with Miley Cyrus's wrecking ball! "Ok" came the response. Now here is where the smart negotiator shuts his mouth and doesn't say another word. Too many people love to keep talking and you know you can sell someone something keep talking and end up talking them out of it inadvertently. I've got 'my' result, I celebrate by giving Julie a kiss and went and made a drink thinking 'Jesus how did that just happen?'

The next day and I am as gobsmacked in the opposite direction as I was to Julie's ready acceptance... No she hasn't changed her mind, she wasn't given the opportunity to...

I did as my GP Andy Lee had instructed, I called Julie's Oncology team at Clatterbridge, Sadly Helen who was our main contact and specialist Nurse was on holiday so I was transferred to the Triage Team who cover day to day matters..  The blogs are a 100% true reflection of Julie's journey, I tell it or we tell it as it is, long winded at times but truthful. You'll all know of our fondness and my eternal gratitude to Clatterbridge and the team's who have dealt with Julie. It's with a very heavy heart that I type this next overview but it's done to highlight a major problem and to hopefully create change for the better. Had Helen been about we would have had the same outcome but it would have been handled much differently than it was. There is a lesson here, thankfully where others may have reacted differently I haven't followed through on this or there could be serious financial consequences. Let me explain the events as was.

Triage is manned by Nurses, the lady I spoke to, I explained my GP had requested I called and we arrange a transfusion.. After a short wait the phone line picked up and the (very polite) lady explained she's spoken to a Doctor and well (apparently) they don't do transfusions at Clatterbridge, "so you need to speak to your GP..". When Julie had her Radiotherapy and chemotherapy her bloods were done at Clatterbridge for if any levels were low she'd have needed a .... transfusion, it was a given this would be done at Clatterbridge, no one ever said different, personally I believed under such circumstances transfusions were done at Clatterbridge but what do I know? What I do know is lol Julie needs a transfusion and I feel I am being fobbed off.. Like that is going to happen! I protested saying so far as I was concerned our GP referred me to her Oncology team for a transfusion not for them to refer me back to him, Julie needs a transfusion urgently, 'what Julie needs Julie WILL get'.. I said I know what my GP will say when I call him back and all of this will delay Julie's treatment and quote "If Julie's treatment is delayed and this is detrimental to her health on someone's head it will be" ... "Err could you hold the line please?" I smile, there is a rethink going on... Suddenly a new voice on the phone, hmmm tone isn't friendly, "How can I help, I'm xxxx I'm the Senior Nurse Practitioner (am sure that's how she described herself).. I repeated my piece above and patronisingly from my perspective it was very, very similar to this as a summary. "My colleague told you we don't do transfusions here you need to call your Dr and arrange it its nothing to do with us" Hmmm "OK, so did you discharge Julie as a patient then and not tell me?""err No I am not saying that, but we haven't treated her since March"
Me: So she's still your patient still has cancer and now you're refusing to treat her?
NP (Nurse practitioner) Err I didn't say that...change of topic anyway YOUR GP SHOULD NOT HAVE told you to call us!
Me: If you have a problem with my GP and his 'signposting' then take that up with him not me but it changes nothing.
NP: Yes I WILL! He had NO Right to tell you to call us!
Me: So the transfusion?
NP We do not do them here! We are going around in circles.
Me: OK Well as I told your colleague, IF this dancing around and being referred back to my GP delays Julie's transfusion and is detrimental to her health on somebody's head it will be and I will refer this to the Commission for Quality Care (CQC) and I will refer this to the local CCG (Clinical Commissioning group - who fund treatments/hospitals on a local basis)
NP: I do not appreciate being threatened.
Me: I'm sure you don't and I did NOT threaten, I explained to you the consequences of a detrimental delay, I will relay the facts of the three conversations by way of a statement in a formal complaint, that will be the conversation with my GP, my conversation with your colleague AND my conversation with you, these bodies will investigate my complaint and they will decide if or not and who or not will be accountable, I have just made you aware out of courtesy of my next moves.
NP: This conversation is going around in circles, I am calling your GP!
That was the end of the conversation.
Truthfully this woman in my view behaved in an obnoxious manner toward the partner and carer of a patient who WAS still under their care and who was now on a palliative care pathway, Not one ounce of compassion was shown just sheer bloody minded I'm right you are wrong arrogance. Despite my blood boiling I had better things to do than concern myself with this bitch! I will get Julie transfused and quickly.

Before I go on I'd say to any organisation and in particular Clatterbridge who rely heavily and fight like hell to get charitable funding that the people you have as public facing need to recognise every patient or caller is a potential charitable donor who could after such an experience deprive an amazing organisation of significant funds all because of a bad, smart arse frosty obnoxious less than caring and certainly NOT in a palliative care ethos kind of way bad ass attitude. As a family we have helped raise a significant sum for Clatterbridge as a thank you for them giving  me Julie for longer, many of you reading this blog will have contributed on the back of us begging and promoting support, this one 'gobby individual could undo all of that in a five minute conversation!' I'm not but for all CCC know I could have been a donor with a £1m cheque in my pocket. I most certainly do NOT expect preferential treatment as a result of our fundraising and whether we had raised 15p or £15,000 people should NOT be spoken to in this manner! Listen up before this woman and her attitude costs you dearly... CCC Still have my/our support, but only on the strength of the relationship with Helen (who would have said, "Andy we don't transfuse here let me call your GP and we'll get it arranged, expect a call shortly"). Dr Brian Haylock, without doubt the kindest compassionate and expert consultant who has given us Julie for at least ten months beyond what I/we expected and on top of that add in the receptionists and the CCC team who we adore because they care! They've cried with me/with us, they've laughed with us, they care! and that's why I will carry on supporting them, on that note watch out for news of how you could win a major unique prize and help raise £3,600 for Clatterbridge Cancer Charity in the next week or so.

I'm leaving this blog here, the above point is so serious it needs reflecting on by Palliative Care teams & ALL charities not just CCC....

And so with a bang....

So it’s the Monday after my Birthday, the couple of days after I’ve been zonked out by taking by my standards a huge 10ml dose of Morphine, Aaron went back yesterday, more tears, they’re totally unavoidable now, whilst I am fighting fluff for all my worth I truly know any day could be my last, I love being here but this must be what playing Russian Roulette is like and pulling the trigger each morning, the odds are stacked against me and one day there will ‘be a bullet in the gun’s chamber’.. It’s a horrible way to live your life but life I want despite the pain, the agitation and my irritability. It’s my brother, Phil’s turn to leave now and with his departure more tears as we say probably our last goodbye’s, there are no good goodbye’s now.

My fretting continues, I am taking slightly more and more morphine to control my pain, Jayne from MacMillan has been out again and between Jayne, Andy & myself it’s been decided that I need Morphine to be added to my syringe driver cocktail. So now it is a mix of Morphine and Midazolam, the idea is that a steadily applied dose should take the edge off the pain and the anxiety, my ultimate fear is I’ll end up on a dose so high I’ll sleep most days by, ultimately I realise this will happen but I don’t want to be rushed to that point. Jayne assures the dose of Morphine going into my syringe driver at 5ml is less than the 7.5ml that I’m already taking orally so it won’t make me anymore sleepy, it’s logical but again I fret. I’m certainly more relaxed even if only for a short period of time, I know we are fighting a losing battle here Fluff will get stronger the drugs will be increased to control it and the harm it is causing and this will continue until fluff has its final charge and the drugs can no longer contain it.

As the weekend approaches I’m, looking forwards to seeing my dear friend Tara and her amazing fella Pete, Tara and I worked together many years ago in a care home in Grimsby, we’ve stayed in touch, Tara even came to see me on Xmas day when we were in Grimsby and it was the day I ended up in Scunthorpe Hospital with my huge seizure, wow hard to believe as I type that this was eight months ago, so much has happened since.

Friday night and our guests arrive, any excuse for a Chinese takeaway for Andy hehe, he and Pete shot out to order it and to grab a rare pint. Andy nor I have ever been large drinkers but the odd social drink, this is nice that he can grab an hour away from me, hehe I’m still ranting when he gets home though! “Where’s my tea Mr Shute?” hehe.

As we eat Andy is suggesting plans for tomorrow, its Saturday and we are planning on going to the Marino lounge to introduce Tara & Pete to this beautiful area and ‘Café’.. I’m still full of scaredy-catness, what if we get stuck down there again?

Saturday morning comes, I have breakfast, I have a small top up dose of morphine for I need to prepare for the moving and handling in the hoist, the carers are lovely but my left side is paralysed, my arm is heavy and pulls on my shoulder, the slightest touch can be mega painful. The girls are so gentle with me I’m such a wuss these days. I like to sit in my all singing - all dancing chair, I think I mentioned it broke, we had a replacement delivered, mysteriously although the same you can feel the difference in the quality and sturdiness. So after the girls have got me out of bed and onto the commode washed me and I’m putting a dress on today! I sit in my chair for a few hours, chatting to Tara & Pete and Maureen, still running Andy ragged hehe. After the carers an hour later it’s the nurses to sort out my syringe driver, I’m excited now so I tell them about going to New Brighton, I am looking forwards to this trip. Bless Pete and Tara and Maureen, every time a team comes in as I can’t just wander off to the loo I have to plan my trips to ‘my bathroom’ (Commode) I obviously don’t want an audience so everyone plays musical chairs and heads to the lounge whilst my personal needs are attended to. Hehe there is no escape from Andy, he’s seen it all before and I’m still shy even though the care team have seen me in my naked totality but this is me using the loo so even the carers step out of the room until I’m ready for them to come back in and at that point Andy calls them. Today I’m not going back into bed, I’m going into my swanky wheelchair ready for my lunch time jaunt. After I’ve been tidied and freshened up in the hoist harness suspended mid-air Andy moved the chair just underneath me, parts of my poor bottom now are tender and getting caught on just a sheet is painful, so painful I want to cry. Chair in position, brakes on Andy and the girls have the sling in position and Andy has the remote to lower the hoist. As he lowers me I had the weirdest feeling come over me, I’ll let Andy tell this bit or he’ll be sulking if I don’t let him hehe.. (It’s MY blog Mr Shute!) hehe.

She’s a cheeky sod at times but I’ll let her off this time. So about to lower Julie into the all singing all dancing wheelchair and Julie said “My mouth, my tongue”, I asked “What”, She replied my tongue is tingling, my lip feels numb” I looked at her and her left lower lip was drooping slightly, as I lowered her another six inches into the chair I realised what was happening, or I thought I did. I asked her to smile, she could just, I asked her to tell me how she was feeling, her words were slightly slurred, I dialled 999asked for an ambulance, this had all the hallmarks of a stroke, remember with a stroke its all about acting FAST, do not delay, look stupid if you have to but every second counts. I explained all the symptoms to the operator she assured assistance was on its way but she still wanted me to take Julie through the stroke tests all of which I’d done, again she reassured help is on the way but we need to do this it will not delay things. Within 2 minutes we had a RRV and an ambulance crew here. Maureen, Pete and Tara were oblivious to these events. Again remain focussed if this is you or your partner. I explained to the paramedics they were checking Julie out and slowly she was returning to normal, she was still going to need admitting to A&E though.  I’d already let the carers go and I popped in to Maureen, Pete & Tara and explained about the ambulance crew.  Tara went with Julie, Pete and I would follow, Maureen was staying at home. We spent the afternoon in A&E before it was eventually decided what we thought was a stroke was in fact a seizure, scary for us all for this is the first seizure in her head or above her shoulders. Before discharging her; the Doctor explained Julie’s blood tests showed no infections but they did show her Haemoglobin levels were lower than they should be and he would ask our GP to get more tests done soon and to follow it up.

Okies me again, that's his fifteen minutes of fame this week hehehe. It’s almost six pm and I am being ambulanced home so much for the Marino lounge, Andy had been feeding me hospital food sandwiches and crisps and water hardly what I had planned. I’m crying again I’ve caused so much disruption, Tara and Pete reassure me but I’m so sorry. We made it home but I was washed out by the experience, it was frightening, I keep asking Andy, “Why is this happening to me?” Once in the house, the ambulance men love my ramp hehe. Once in the house the ambulance crew wonder how they’re going to get me into bed as ”we’re not trained to use the hoist and harness” good job Andy is now the master of the sling or should that be swing? Hehe. The ambulance men were stunned by Andy’s proficiency as he safely got me on to the bed. Tara and Andy helped position all of my pillows, poor Pete was relegated to the lounge again. Soon as I was wrapped up snugly everyone was back in to see me especially Maureen, she hugged me tight…. I slept the night away.

Early Sunday morning I woke Andy from his blow up mattress bed, well he heard me as I call it ‘jiffling’, “What’s up hunny?” “ I don’t think my catheter is working, is there wee in my night bag?” sleepily Andy struggled out of his ‘bed’ and came and checked me out, there was only a small amount, nothing compared to what I’d drank.. Its 02.00 and Andy is calling the night Nurses, at three they are with us and they flush my catheter, slowly it started working, I don’t think I mentioned it but on top of everything else I have a urinary tract infection! The team don’t like to change catheters during infection if they can help it. So we bid them goodnight and our thanks and its back to sleep, I’m still restless though and I don’t feel like I’m weeing, I ask Andy and I can hear his impatience at being disturbed barely forty mins after the nurses left. He shone his torch on my bag and he said there was some pee in the bag but again not lots so back to sleep ha! Thirty mins later I’m saying to Andy, I feel wet, I think I’m bypassing the catheter, sure enough I am. Another call to the nurses and its now 04.30 and they try flushing it again, no joy, I really don’t want this changing, one of the team, suggested trying to deflate the air bubble/tiny balloon they use to keep the catheter in place, yay, success I was peeing for England, I peed around one and a half litres in less than an hour! Andy and the nurses changed my special night absorbent sheet nicknamed a kylie (dunno before you ask) . Changes of sheets and things like Kylies are an art form when you can’t be moved out of bed.  First I was asked to roll towards Andy on the one side of the bed, as I held on to him for grim death the nurses push the damp kylie as far under me as they can and they place a partly rolled replacement in underneath it.  Once in place me saying “Mind my bottom” (It’s sore!!) I then roll flat and the team pull me towards them (I’ve got no left side usage), this enables Andy to remove the damp kylie and then pull the rolled up one flat underneath me. I’m soon covered with my cushions sheets and blankets, Winston is in position and so let’s try and sleep.  It’s been a rough weekend, I feel bad for buggering up Pete & Tara’s weekend, they reassure me but I’m so sorry.

Well the weekend ends on a bit of a high, I’d been telling Andy I wanted my nails varnished and I needed to lose my Nanny McPhee look (Sodding whiskers everywhere!) I needed waxing. In the week Andy stumbled across an amazing young lady…. (No not like that!!). We’ve fast realised getting a mobile anything or anybody into your house is almost like Mission Impossible, a friend of Letty’s Jacky came and waxed me a few weeks ago but she lives north of Liverpool and much as I love her I didn’t feel it was right to be dragging her over on a Sunday. Andy made a few calls eventually he spoke to a young lady called Rebecca. He explained my circumstances and although she now had her own salon and didn’t really do mobile work she was prepared to come and see me and sort me out, she had to check with her nail technician to see if she could make it on the next Sunday, ten minutes later Rebecca called Andy back and confirmed they could both make it., how lovely is this? Andy messaged Rebecca, they’d not mentioned fees not that Andy was bothered for whatever the cost he (and I) feel it is worth it. So Andy messaged Rebecca basically saying “thank you and by the way I’ll pay you in cash on the day, please let me know how much”, the reply was astonishing…. Rebecca responded, ”Andy there will be no fee, we won’t be charging you!” We’ve not met or heard of Rebecca, a total stranger and her colleague want to give up their Sunday to spruce me up, they don’t know me and they want to do it for free??? This world is full of amazing people but this I can tell you is humbling. Those that know Andy  know he is full of old fashioned values, lol this troubled him. He responded and told Rebecca that had we known her he would reluctantly accept their generous offer but as a first time he would be paying her, the response went like this: “Rebecca, If this is your position then I will give you an envelope with what I consider a fair fee in it, if you choose to keep it I am more than happy, If you feel uncomfortable about this and would like to donate some or all of it to say a charity, Julie has been supporting Clatterbridge Cancer Charity” That was the end of the subject. Sunday came and these two ladies are here and sorting me out, they are amazing, so friendly soooo very pretty too! So accommodating, they too had to play musical chairs as I had the carers arrive.  They were with me well over two hours, Andy had put £100 into the sealed envelope, and as they left me all sparkly and actually feeling like a woman again saying they’ll gladly come back. Andy handed the envelope to Rebecca and thanked the girls immensely. Andy came in and I thanked him I told him I felt feminine again, it’s such a simple thing and yes guys, it makes us feel better, it costs a lot but we are worth it, hehe treat your lady’s occasionally.

Pete and Tara set off home promising they’d be back in two weeks; they’re from my home town and they’re promising to bring me fresh Grimsby Fish on their return, trust me when I say there is no fish like freshly landed Grimsby fish, once the biggest fishing port in the UK now just a shadow of its former self. We waved  Tara & Pete off, my bed goes high in the air so I can get a birds eye view of the world. I’ll miss them, but ive got their next visit and fish to look forwards to, I’ve got my nails done, my nanny McPhee beard hehe has gone, (steroids cause hair growth except on Andy’s head, hehe nothing is going to help that one).

It’s the middle of the week and Andy called me, I can hear emotion in his voice, I asked “What’s wrong?”, “Nothing” came the answer something was, he was gulping another sign he’s fighting back tears the softy, it turns out Rebecca had sent Andy a picture text message and a short message with it. Here it is…..

 

 

It gets incredibly better, not only had this ‘Angel’ donated hers and her colleague's full fee to Clatterbridge Cancer Charity (gift aided it too!) Rebecca informed Andy that she intended to give up one Sunday a month to help other ladies in similar situations to mine… This world has some amazing women in it, none more Amazing than Rebecca and her associate…