Saturday is relatively uneventful except for the daily ‘black
humour’ of Julie’s comments now, bless her she asked me this morning how I’d
managed to move her in her bed up into our bedroom on the first floor without waking her and she
pointed to the wall in front of her whilst talking to mum saying “Do you see
those four pictures up there (there are no pictures) don’t they look like
Olivia?”.. It’s tragically sad. The Nurses were here and there’s a bit of an
issue, they order the drugs for the syringe drivers not I, apparently ‘We’ are desperately low on the Dexamethasone
vial, they’ve contacted the GP out of hours service to arrange a prescription
and ask would I collect it once they’ve located a pharmacy with some, vials are
uncommon so it’s not something on every pharmacy shelf, the bank holiday has
thrown everyone, potential disaster averted for a local pharmacy had enough to
see us through until Tuesday now.
Sunday 30th August, Julie is slowly returning
to sleeping more, eating less and hardly drinking, confusion continues to reign
too bless her. We’ve got visitors today; Julie’s dad is coming to see her
thanks to the kindness of Julie’s first husband George. I’ve not told Julie her
dad is coming, as the old saying goes ‘there’s many a slip between the lip and
the cup’, I don’t want to raise her hopes for that in itself will bring more
sobbing and that in itself is heart breaking for us to witness, we seem to
spend a lot of time consoling Julie these days, the tumour is causing havoc
with her emotions and as the hospice consultant told her she has no control
over this any longer.
Early afternoon the nurses and carers who stream in and
out are long gone when suddenly the doorbell rings, as I stood up to go to the
door (That is deliberately left open all day now), Julie from her apparent sleep
like state snapped loudly “Don’t let them in, Send them away!”. As I entered
our hallway through the interior stained glass door I could see George &
Julie’s Dad, Bob. I motioned them in and replied to Julie, “you’re not going to
want to send these visitors away”. I’d moved close to her bed as they entered
the room Julie burst into tears and my eyes welled up, I knew what this meant
without further words being spoken, as Bob approached the bed and bent over the
tears flooded out of them both and I stepped away towards George, I thanked him
for his kindness in making this ‘mercy dash’ and I exited the room, Maureen had
too, I came back in to see if anyone wanted a cuppa, Bob is extremely tall I’d
guess around 6’3” and Julie’s bed was really low, I raised the bed to a more
convenient height and I brought a tub chair close to the bedside for Bob to
make use of.
Julie was in and out of sleep, she looks peaceful and as
I say there is no indication that she is suffering (uncontrolled) pain. I’m
much relieved that Bob has made it in time, the saying goes that no parent
wants to bury their child/children, sadly in this case it will be so. Mid-way
through the afternoon and conversations Julie started (without prompting) to
discuss her funeral arrangements; she
asked me to confirm that I’d honour her wish to have her funeral in Grimsby, I
have to admit as the time has grown shorter what was my original suggestion to
Julie when she first expressed (if her funeral was here) sadness that her
father wouldn’t be able to travel to be at her funeral and I said the natural
thing to do was to have her funeral in Grimsby for this very reason and that
the rest of the family were there too, recently though I’ve had personal
reservations about actually doing this, even the funeral director I met with
just ten days ago questioned ‘my madness'; her words were “Surely you will have
your wife cremated locally for friends and family over here then take her ashes
over to Grimsby for a service there?” I’ve got my own logic and reasons for
fighting with this in my head one of them is my head ruling my heart for a
change as in it is going to add around £1,000 to £1,500 to arrange for Julie’s
body to be ‘repatriated to Grimsby’ on top of traditional funeral costs and
given her very first conversation to me was that she “wanted to get out of
Grimsby for good at her earliest opportunity” I can’t help but see the irony in
her last day on earth being spent in Grimsby.. I just don’t know, I’ve always
put Julie first and I’ve said every time what Julie wants Julie gets but and I
do understand but raise it as part of my thought process so that you all
understand the turmoil this is causing, so many times I’ve heard lately from
friends and from family that they’ve not visited because it’s too distressing
for them in other words (my interpretation is) their own feelings come before
Julie’s. It’s difficult there are no rules and we are all guided by our own moral
compasses and I’m probably going to become public enemy number one for even daring
to raise the subject all I’ll say is I’ve not necessarily had the luxury to
adopt your stances… Julie again in front of her Dad & George asked me “You
will have my funeral in Grimsby won’t you?” Despite the personal anguish to
myself, despite potentially depriving local friends who have seen her regularly
either being put to incredible expense to attend her funeral or to have to miss
it and despite the added financial burden the ‘repatriation’ will cost me I
will honour Julie’s wishes, I truly believe that because Julie and I have lived
quite a lavish lifestyle in terms of the amount of holidays we took or more
like the believed lavishness of the holidays we’ve taken I’m certain there is a
popular misnomer that “It’s alright Andy is loaded” my turn to go Hehe! I
sodding wish! The issue and moral to this particular story is; in my eyes life
is about doing the right thing and putting others before ourselves. So to
confirm, Julie’s funeral will be in Grimsby, Julie’s wishes are those that want
to attend should dress as if to party not to mourn, NOT FANCY DRESS I’d add, Julie
wants us to celebrate her life. (Potential burglars who trawl the net and Facebook
looking for such sick opportunism such as was highlighted with Cilla Black’s recent
death – Burglars be warned there will be friends staying in the house here
until I return, we have alarms & CCTV too, the property will not be left
empty at any time!) and lol trust me there’s ‘nowt worth nicking’ anyway.. Yes
it’s bizarre discussing Julie’s funeral as Maureen & I sit here watching
her sleep but that’s the reality of life.
Bob and George spent the best part of four hours here
before as you’d expect, tearful goodbyes. Bob had brought some free range eggs
off her brother’s allotment along with some rhubarb, Julie waxed lyrically
about stealing her granddad’s rhubarb as a child and getting a bag full of
sugar to dip it into and suffering his wrath for ‘nicking it’, the brain is a
funny thing, Julie can remember events from 45 plus years ago but last week had
no recollection of having two huge seizures and a hospital visit, in this
instance though that’s a blessing.
Monday was quiet our dear friend June popped over, Julie's
slept through most of her visit, bless her she’s so tired these days, I can
talk, I went up for a shower and decided to grab a half an hour nap, four hours
later….
Tuesday and well holy hell breaks out at Shute Manor. It
started as a normal day after a night of broken sleep as Julie kept waking
either wanting moving up her bed or wanting a drink or her lips moistened. I
unmade my temporary blow up bed and returned Julie’s bedroom to normal all is
tranquil. Around noon the Community nurses arrived to start mixing up
the cocktail that goes into Julie’s syringe driver, my phone rang and it was the
lovely Jayne from Macmillan Nurses, Julie appeared to be asleep and to save
disturbing her and the team mixing Julie’s cocktail of drugs I stepped out of the room
and into our lounge. Jayne and I chatted, I explained Julie was still on the up (again)
despite all the forecasts of her demise however, she was still having between
two and three morphine top ups via a liquid form called Oramorph, We are
authorised to give Julie up to 6 x 2.5ml doses (15ml) on top of the 7.5ml in her syringe driver. On
three out of the last four days Julie has had 7.5ml in (3) top up doses, historically
its been mainly two. Jayne and I agree its probably best to move her up to 10ml
in the driver, I went back in to the other room and handed the phone to Carolyn
our Nurse team’s head so the change can be made. As they were doing the driver the morphine can be
increased today. Mum was standing next to Julie’s bed, she was waving her hand
at me so I went over and BANG! Julie went ballistic and vitriolic on me! “Where
the hell have you been? Conspiring behind my back you’ve been gone ages!” I’d
been gone five minutes “you’re conspiring to kill me!” What did she just say
and accuse me of??? I’m floored, the verbal assault continued “I know what you’re
like, keeping me in my bed" there was so much effing and blinding I couldn’t
believe it, Julie wasn’t known for swearing if she swore at me I knew I’d peed
her off big time, this ‘attack came from nowhere and as I say was mortified. I
explained why I had taken the call outside as I thought she was sleeping “that’s
what you effing well say” as I continued I got the “Whatever”! I stuck to it
and explained the morphine dose to go in her driver was the equivalent of just
one dose that I give her at her request
each day. “You just want to keep me asleep!”. I tried to rationalise
with her but it was just antagonising her, I backed away and sat quietly for a
minute, the nurses were ‘Gobsmacked’ at the tirade of abuse, lol little did
they know what was coming their way! I went back to explaining to Julie and
reiterated the morphine increase in her driver will not send her to sleep it
will for now reduce the amount we have to give her ‘manually’. She had just
about accepted it and Carolyn approached the bed with Julie’s drugs in the
syringe in her hand, she also had a replacement syringe driver as these have to
be replaced and serviced regularly, trust it to be today… Julie flipped! “You
lot must think I’m stupid! You forget I’ve worked with these things and your
adding another f*****g driver to me, she was livid, she also had the wrong end
of the stick but there is no rationalising with her. Carolyn explained the
reason for the driver change and confirmed the extra 2.5ml Morphine will not
knock her out or make her sleepy, it took a couple of minutes to replenish the
two existing drivers, I assured Julie that if she felt and it was making her
sleepier I would arrange for the dosage to be reduced. “You’ll tell me F*****g
anything” I had to take control of this situation, “Apologise to Carolyn for
swearing please, you don’t swear” ha like that was going to happen! After the
drivers were complete I asked Carolyn to have a look at Julie’s tongue for me, she
had either thrush or mouth ulcers in my opinion. “Hunny please open your mouth
and stick out your tongue” she did for a nano second haha. I asked her again
and so did Carolyn “No, I won’t I’m sorry but I don’t trust you!" Carolyn asked “Me
Julie?” the answer came back “Yes you!, I’m sorry I don’t trust you!” all
through this she was sounding rational.
 |
| Syringe Driver and Julie's bespoke Cath Kidstonesque bag |
It took me a good five minutes to get her to agree to
open her mouth for me and to stick out her tongue, it was felt it was both, we
have some Nystan which is a fix for both conditions so I gave Julie a one ml
dose and had her swish it around her mouth. Lol the good thing is she’s
forgotten about the syringe drivers and the conspiracy theories and suddenly
the reality of what had just occurred hit her and she started to sob in between
apologising to Carolyn for being so horrible to her, Julie was mortified,
Carolyn told her not to worry but assured her she was only here for Julie’s
best interests and to keep her comfortable and healthy, a sobbed “I know, I’m
sorry” came out, This is clearly Fluff on the march for the other drugs relieve
anxiety & agitation. Within minutes an uneasy calm descended across the
room. I walked Carolyn & Liam out apologising and going “Wow, no idea where
that came from”, by now it was funny but it’s not, we’ve entered a new phase…
I had to pop out for the afternoon, I’d put some Take
That tickets into a prize draw with all the profits going to Clatterbridge
Cancer Charity, I wanted them to conduct the draw, the prize was worth just
under £400 so it needed integrity. It was also a great excuse to see Karen
& Louise of CCC. We caught up and Karen did the draw witnessed by Louise
and myself. On completion I paid in the profit made of £572.25, whilst I had
hoped to raise around £3,600 whilst disappointed I still felt good that friends
family and friends of friends raised £572.25, I am thrilled and thank you to
all. I hope too that this demonstrates that true to my word despite the bad
taste incident written up in a blog a few weeks ago I confirmed then my
loyalties in terms of fundraising, lie with CCC.
Driving home I popped into Barberanne’s to get my little
bit of hair tidied up, a spooky coincidence, as I walked into what seemed like a
school children’s playground, its back to school tomorrow and Thursday, it’s
haircut time! The spooky coincidence, my dear friend Jeanette is busy cutting
hair and chatting to her friend and our guardian angel neighbour from over the
road Corrinna, we had no idea we all knew each other! Small world.
You’d think this was all enough excitement for one day
but nope, I was about to walk into a comedy sketch tinged with sadness..
As I sat down at home talking to Julie and holding her
hand Maureen in an adjacent chair. Julie suddenly said “I need to talk to you,......
alone” ok… what’s coming now? Maureen made her excuses and stepped out of the
room, what followed well I’m still smiling. Here we go:
Julie: Have you made up the packs?
Me: What packs?
Julie: The information packs?
Me (no idea what she is on about) Oh them, yes I’ve made
them up
Julie: So everyone knows what they have to do then?
Me: Yes, they all know…
Julie: Do I need to make my bank account look like we’ve
been to France?
Me: France?
Julie: Yes, do I need to make it look like we’ve been to
Paris?
Me: No hunny it will be fine like it is…
Julie: Oh OK then.
Within a minute she was in a deep sleep and I was
chuckling like mad, it seems I’ve been married to an MI5 spy for all these
years and never knew hahaha….
It's a combination of the tumour and the sedatives that lead to these hallucinations and the confusion..It's sad but it makes a difficult situation well both funny and it builds memories for my memory box, I hope for family nd friends and those of you who have become attached to Julie will take comfort in this humour too, I've got one from my Dad's days I laugh to myself about it almost daily, I'm sure this one will never leave me..
It would have been an amazing end to a bizarre day had it
ended here.
About fifteen minutes later Julie is wide awake, she’s
looking straight at me. “OK, this is it then is it? I’m going to lie here and
go to sleep and then I won’t wake up in the morning? Is that how this goes?”
Wow! Weeks of fighting and refusing to accept where we are and this comes out
so naturally and matter of fact.. I had to bite the bullet on this “Well one
day that is or should be how it will happen hunny but to me you still seem too
strong, unless you know something I don’t?” the conversation went to and fro
trying to rationalise the conversation then another bombshell hit! “So is there
any way we can speed this up?” to coin a very recent abbreviation.. WTF?? Where
has this all come from? “Hunny, there’s no way we can speed this up, nature has
to take its course, there is nothing we can do BUT you know Maureen and I will
be here with you all the time?” With resignation she said “This is why I wanted
to go into the hospice” I had to explain it would make no difference, home or
hospice there is no option or alternative to mother nature taking her course..
I think to myself, thank god she cannot reach any of her drugs…
