The Rollercoaster Is Out Of Control

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

Platelet Transfusion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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