On Friday 9th
April I started my course of Lomustine (aka CCNU) it’s one capsule a day for
four days and that’s it for the month.
I have to take it last thing at night with an anti-sickness
drug, I never felt sick the first time around on my Temodal and I am fortunate
that either the pills are doing what it says on the packet or I am naturally
fine, I’m not taking the chance though.
Initially the only side effects were tiredness; I seem to
sleep more on my (Soon to be gone) Chaise – more on this later down. By Tuesday
I had developed a wheeze/rattle, I wasn’t sure if it was on my chest or not so
I called Andy, he called our GP’s and fought through the beaurocratic nightmare
of getting a booking, on hold for 13 minutes then cut off, answered after
another 8 minutes then told “All of the day slots are taken you’ll have to call
back in the morning” HA, must be a new receptionist or she would have known
better, I’d love to be a fly on the wall in Andy’s office when he starts, he’s
either sarcastically funny or he makes his point… Today it was “So, let me get
this right, I have to hold on for 21 minutes including getting cut off once to
then be told I cannot make an appointment now for my terminally ill wife who is
undergoing chemotherapy and has a problem and needs to see a Dr?” Suffice to
say within a minute he had an appointment for me at 11.00 the next day,
Wednesday 15th April.
The phone went mad today! People calling me including the
district nurses who our GP had asked to make contact with me and they want to
come Thursday. Then late on the imaging team at Clatterbridge called “Julie,
can you make it in at 08.45 for a scan? You can decline and we’ll find another
later slot but we’ve got a slot then”, we’ll be there I tell them. I also had the OH team ring me to see how I’m
getting on think they’re sending someone out to see me too.
Andy walked in after work around 8pm he did a small shop on
the way home, he’s worse than a kid! He comes home with stuff I never asked for
and hahaha forgot the very two things I asked him to specifically get! I soon forgive him for I got flowers too,
bless him. Anyway I tell him about my day as we chat romantically me sat on the
loo. “you have booked tomorrow off? I’ve got a scan at 08.45”. Andy dropped in “that’s fine, I’ll have to
cancel the appointment to get my leg wound dressed as that’s at 9”, I’d forgotten and apologised, Andy has lower
leg problems, in the summer mosquitos or gnats love his ankles and the clumsy
sod caught the back of his leg with a suitcase last August and the resulting
wound is taking forever to be recover/heal. He’s got poor lower limb
circulation bless him, twice a week dressing changes, seven courses of
antibiotics since December and it’s still not healed, he just plays it down but
I do worry about him and I know sometimes it pains him, lol if we’d have been
born horses we would have both been shot by now!
Wednesday and we are up at the usual daft o’clock I have my
routine its very slow, from the time I get up until I sit down for my breakfast
and we are both showered and dressed its around 90 minutes now, in days gone by
maybe thirty. I am so slow nowadays; I want to scream at times.
We get to Clatterbridge as we parked up and as Andy was
getting my wheelchair out of the car one of the charity office windows behind
him opened and Karen was saying hi, me I was stuck in the car looking the other way,
we’ll grab a coffee later hopefully.
I’m taken down to the MRI suite for my scan, all the usual
but essential questions about health and whether I’ve got any metal in or on
me. All essential the M in MRI is for Magnetic (powerful magnet!), they don’t
even allow wheelchairs that are made of magnetic materials so I have to swap to
one of them, it’s no hardship. Ladies, even your bra has to come off only because of the bones and hooks & eyes. This scan takes around forty minutes and midway
through they inject a colour contrasting dye in to my veins, it doesn’t
hurt but afterwards you have to drink extra fluids to flush this out.
Once out we pop into the WRVS coffee shop for a drink and
some toast, Andy ordered then he shot across to the adjacent charity office to see if Karen wants a coffee but
they’re all in a meeting, I’ll catch up with them all soon I am certain. Coffee
done and we’re off to our GP’s. Seems I have a wheeze in my bronchial tract as
opposed to on my lungs so its not a chest infection, phew. The Dr prescribes me
a new inhaler, think this will take me to nine drugs a day to take now… I
rattle as I walk hehe. I got a bit upset in the Drs, Andy did the very thing
he’s often accused older consultants of doing and whilst at times in my best
interests I’d love him to give me the chance to explain my symptoms,
circumstances etc. I feel like I’m invisible at times now, it is hard I know
for sometimes I need his help other times I just want to do it all myself. He’s apologetic as was the Dr, I know it’s a
hard call for I could miss something crucial out, I don’t know, I think he will
now just let me talk and get on with it. Why oh why am I so ill and why is life
full of dilemmas for me???? !
On the way out Andy checked if they’d managed to rebook his
leg dressing change with our lovely practice Nurse Bernie, she’s lovely an
amazing patient approach I feel so at ease with her. Anyway, Andy’s appt had
been swapped and he was in next. We went in together, I am very clingy
nowadays, I don’t want to be on my own for what if a seizure started or worse?
Earlier in the day I mentioned to Andy I felt I still had a piece of a stitch
in my head, so he mentioned it to Bernie and lo and behold I did so she quickly
had that out with not too much whinging from me. I saw Andy’s leg wound bless
him, it’s not deep but it looks yucky to me.
Anyway now its home! Well for me anyway, Andy still has to go into the
office though, no peace for the wicked Mr Shute uh? Hehe. Letty arrived to see
me with her grandson, we haven’t had a catch up for a few weeks, I love this
woman to bits. I slept afterwards, on my
trusty chaise. Sadly it’s got to go, part of me being a burden is I need my
legs up for my ankles swell these days, but as my left leg is so weak now I
cannot lift it up, Andy moves me into position but he’s a strapping guy, its
nigh on impossible for woon. So I’ve made a decision, I am buying myself a
chair that can recline raise my legs almost catapult me out of it and so it
will be going where the chaise goes. (Anyone wanna free chaise lol) So I’m
eagerly awaiting delivery of my new chair.
Andy comes home with the two items he’d stupidly not got me
the night before and he’s armed with two new videos! He’s not safe to be let
out on his own! I’m not feeling too
good; I’ve been sleepy & I feel like I have a cold coming on, sneezing, I’m
nasally… Is the chemotherapy weakening my immune system as it can? I’m checking
my temperature daily at the moment and I’m not running a fever, seems it’s
‘just a cold’, yes guys a cold not man flu hehe.
Thursday arrives and I am ‘snotty’ but my temperature is
fine and I feel ok despite seeming to be full of a cold.
Well Andy ordered my chair on Thursday and its now Tuesday
and he’s heard nothing, we are meant to get a call saying when it will be
delivered. Now here is stupid for you…. We could have had free next day
delivery but that means a courier delivering the box(es) to the door, Andy isn’t
about during the day and this chair will be heavy, the company, part of one of
one of the top two chemist chains in the country… offered delivery via their
own team but it carried a cost of £50, that included setting it up in the house
for me, Andy haggled them down to £40 (Always ask if there is a discount or deal at worst they can say no) . Anyway he assumed as he hadn’t been told
different that it might take a couple of days. So Tuesday he calls, this is his
account of events. Ok… I called explained politely to a young lady about
ordering the chair, no phone call etc only to be told “Well its 7-10 working
days for delivery” Ha, really?? I explained there was no way on earth I would
have placed the order on knowledge of that..the response was “You would have
been told when you ordered it all of our call handlers follow a script and that’s
part of it, we do record our calls you know”… Really? Well the one thing I am
is a good listener and no way was I told. My response was “I certainly was not
told and so be my guest replay your recording” this kind of threw her and the
conversation started to get negative, she said “I’ll email the logistics
manager and ask them to chase the date up” I added and add “Please call the
customer before 5pm with the delivery date” her response was, well, disappointing
but I say to you all as part of the advice we are trying to pass on, dig in and
although always be politely don’t back down… She responded “I can add that but I
can’t guarantee it will happen”… Me really quick response “Well tell you what add this instead…Please
contact the customer by 5pm tonight with a delivery date or he will cancel his
£500 order with us”… Again poor response, “That’s up to you Sir”… At this point
I politely asked her if she had a supervisor and of course she did so I asked
to speak to her. Bad start by the Supervisor "Mr Shuter, How can I help?" Me - "Well start by removing the non-existent R in my surname.....I started the conversation by asking the Supervisor if she was
up to speed on my call or did I have to explain it again, she confirmed she was
so I asked her to give me her understanding of the situation (Use a phrase like Ok give me your understanding of where we are at) . In fairness it
was pretty spot on.. Always do this, they might think they have the full story but they could be well off the mark it will save your breath and probably help
your blood pressure too.
I did add at this point the reason for needing the chair and
justified why I would not have placed the order on a 7-10 (working day basis),
I also in case like this always add “Do you feel this is the excellent customer
service you say you offer” when you do this if they waffle at you lol I just
add "the question warranted a yes or no answer, is this good customer service
that I’ve experienced?…." (The answer is clearly no) this lady assured me she would speak to the
warehouse team and come back with a date for me before 5pm… There, wasn’t too
difficult was it? Within ten minutes I was called back and she broke the news
the chair would be delivered Thursday quite proud this was just five working
days from my ordering it…
Julie here again. Well the chair arrives and it’s all
singing and dancing, I’m very happy with it, the only thing is at the moment I
have it facing the wrong way for the power leads are too short, Andy the smart ass
said the night before he’d leave an extension cable out, I told him It wouldn’t
need it, I knew there would be a smart ass comment when he gets home (grr why
is he right so often?) I called him “Told you” was the reply but he said he’d
pick me up one to match the dark wooden floor..
I met a lovely lady last December called Nicki Spindler, she
and Andy keep in touch via twitter and she wanted to come visit me so we
arranged it for today, she’s beautiful and blooming at 7 months pregnant and
she’s brought me tulips, I love flowers but.. that’s no hint if you are
visiting, I like the odd discrete vase of flowers but I’m not living in a
funeral parlour yet and lol Chocolates or sweets are banned, I wont eat refined sugars now and the fat frog doesn't need any encouragement hehe!! We had a great chat and we had the best Cath Kidston mugs
out. I love visitors though I apologise now for being so tired all the time and
I’m drained so my sense of humour isn’t quite what it once was and I drift in and out of sleep.
Well Friday comes and Andy is off to give Vince moral
support on his Son Andrew’s (Another Andrew!) Stag do, I’ve got Emma, Chloe
& Abbie coming over, also Letty & Blue Eagle, it’s a mini agents meeting
with three of the four of us undercover hehe.. They’re here until Andy gets
home Sunday, I’ll miss him but I know he needs a break from me, I keep
apologising to him for being such hard work he won’t hear it but I know I am, I
am so dependent on him now. Letty is going to be sharing my bed in his place. DOWN BOYS! hehe
We had great fun, the girls are lovely, Emma has obviously
explained how they need to be quietish and in the main it worked though occasionally
I’d stress and yell at them, I feel so bad but I can’t help myself or cope, I
don’t want to be remembered as the grandma that always shouted at us… My brother Phil turned up too bless him, so I've seen all four brothers in the last month now.
Saturday night my left leg would not work, bless poor Letty,
my trip to the loo took us an hour to make, its not twenty feet from my bed.. I’m
breathless, I’m not feeling steady, I’m shaky, something isn’t right I know it.
I dozed in and out of sleep on Sunday, bless her Emma has
come all this way and I’m sleeping, I feel bad.
Andy arrived home about 4pm, Ollypop was on him like a rash,
she has him curled around her little finger, her big eyes just make him melt
and he’ll do anything for her the little bugger hehe. Anyway everyone gets hugs and
I get my kiss too, I’ve missed him he’ll know, he doesn’t need me to say it. I
explained all of my problems to him. I’m
even tired writing this so I’ll hand over to Andy for this bit gets ‘tricky’
too.
Andy here, right this is going to get distressing for some
of you I’m afraid, I’m going to split this piece into two blogs, the second I
will publish later tonight…
It was obvious on coming home that Julie wasn’t well, I was
shocked by her appearance she looked like she had aged ten years in 3 days
since I last saw her. The looks on the others faces too, Letty, Woon &
Emma, they’re all concerned even
without uttering a word.
Now I was home Letty needed to get back to her family, I
spoke to her in private at the front door, she was extremely concerned even to
the point of suggesting it might be an idea to move her bed downstairs, I know
Julie won’t go for this but we all have to consider all options, at this point
we are both of the view that Julie’s time is very limited now, I can’t contain
my tears, my eyes well up, I’ll do whatever I need to do but I am exasperated
that I cannot save myself from losing my wife, my best friend, my soul mate,
its been tough watching her deteriorate and for us now to be at this so obvious
stage, nothing can prepare you for this even though we’ve known this day would
come, the harsh reality is painful. She hugged me like the dear friend that she
is, bless her she’s suffered bereavement this year too, life isn’t good… I
wiped my eyes and went back to Julie well for thirty seconds before Olivia ‘my
eyes are the size of dustbin lids’ Buckley decided I needed to play with her, we
should not have favourites but I have to concede this little bugger is just a
cute nose in front of the other five grandchildren all of whom I love dearly.
Sadly its time for Emma, the grandchildren and Woon to go
home, June has been my rock as well as Julie’s this last three weeks, she’s
made some big sacrifices to support us both, I’ll be eternally grateful. Well
hugs and kisses, Julie is in her chair, I had to turn away as Emma hugged her
mum, I knew this was going to be heart breaking for them both, I’m truly of the
view this is their last goodbye.. I left the room, I later found out Julie
begged Emma not to go… Damn this awful disease. Every goodbye now fills Julie
with tears, she is no one’s fool, she knows how close things have become now,
the Grimsby trip was the realization tipping point since then there have been
tears streaming down Julie’s face at every goodbye, I try to stay strong for her but at times
our tears mix on her cheek….
Julie stayed in her chair as I saw everyone off, yes I cried
walking back up our path, I know I’ll see them all again many times but I
cannot help feel for everyone else who have just said their last goodbyes to Mum, Julie and grandma..
Sunday evening, our dear Friend Scouse who is on Julie
sitting duty from Monday morning comes over to stay the night, Phil is still
here. It’s late 9.30 ish and I am famished (again) so I suggested a Chinese take
away. By 10pm we were eating but Julie had already told me earlier in the day
she cannot cope with full meals now almost needing to just pick at small portions.
She had two small spoons of chow Mein and within ten minutes she was telling me
she needed a trip to the loo. She’s fretting about everything now, her left leg
won’t work she said (though I walked her in to the lounge from the dining room
and her dexterity impressed me). Given her being adamant about her leg I
fetched her wheel chair, he confidence is severely shot from the last time I
helped her off the sofa, it took her 20 minutes before she’d let me help her
into it.
Its ten feet to the stair lift, once there no way was she
getting out of that wheelchair. Her breathing is laboured, her head is down but
just standing and ‘dropping (gently and assisted) into the wheelchair’ has
exhausted her. I’m concerned for she needs the loo and she is feeling nauseous.
I sat with her for 20 minutes and said irrelevant I needed to get her to the
loo now. She let me help her but she was obviously weak. I got her to the top
of the stairs and again she didn’t want to get off the stair lift, I left her
to rest, ran downstairs and got the wheelchair, I got it upstairs and tested it
to see if it would go through the loo door, it would but I’d be needing a paint
job on the door frames afterwards but at least I know Julie won’t have to exert
herself walking. She’s still very lethargic;
I’m concerned on many fronts not least for her need to visit the loo. Another
twenty minutes and I explained it was imperative we got her to the loo now.
Again we managed to get her into the wheel chair and with a bit of good luck
the journey to the loo seat was swift though she was in panic as she stood up
as I lowered her PJ’s. I left her and sat outside considering my next moves, I periodically
checked on her over the next 30 minutes, despite the urgency for the loo
nothing happened, it took 20 minutes or so before she was sitting outside the
loo looking at the second stair lift that covers the three steps to the landing
our bedrooms are on. I decided at this point and explained to her that I was
going to get her to bed and call a Doctor. With the aid of June I tried to lift
her from the wheelchair and you would have thought I was murdering her, bless
her. She was panicking, moaning/groaning and her left leg problem was making
things difficult, I managed to turn her and get her on the stair lift but she
was only partly sitting on it and she was in distress. I asked if she had pain
in her tummy, she said no. I then told her I’d like to check and feel it for I wanted
to put the stair lift seat belt on her god forbid she slipped off it now. I
gently pressed her tummy she was ok so I strapped her safely in, whilst doing
this I asked June to grab the throws off the beds to wrap her in them. We covered
her up she was cold, I fetched her woollen hat (we lose more heat out of our
heads than any other part of the body, I heated her wheaty bag , all the time
June was supporting her, Julie’s head leaning against her, I called the
District Nurse service, they called a GP and ten minutes later he was pulling
up. On arrival I walked him up our path briefing him about Julie, by the time he arrived with her he was
able to talk to her and start his assessment, June and I stood back as her
examined her, her body temp was 36 so fine but he was struggling to get a pulse
or her BP, none of his equipment was picking it up, he resorted to manually
checking her BP and it was low, very low. He said he wanted her in hospital and
would call an ambulance. I gave him Julie’s drug regime info as he wrote up a
letter for me/her. I assembled all of her drugs in her drug box for it would
need to go in the ambulance to the hospital too.
Within five minutes two paramedics are at the open door, and
they come up, they only just missed the Dr. Their equipment would not pick up
Julies pulse or BP either, this set off warning bells for me but I remained
calm. Two mins later and an ambulance crew arrived. The four paramedics were
superb, they explained to Julie they needed to get her downstairs on to their
trolley seat and the easiest way would be using her stair lift, with the
security of four of them assisting she allowed them to help her the 3 feet to
it, truth be told she was too weak to object.
On getting her down, into their chair and wrapping her in a
thermal blanket still wearing her woollen hat they manoeuvred her out of the
house. June offered to go in the ambulance with her I would follow shortly
after in my car. As the team settled Julie into the ambulance one of the team
returned and spoke with me, he enquired about the side effects of the Lomustine
(her chemo) for he felt she was Neutropenic, Neutropenia is where the white
blood cells level drop dangerously low, yes it is a side effect… “We’ll blue
light her in then” Sitting on my stairs talking to him my eyes filled with
tears, low BP, can’t find a pulse,
Neutropenic, I’m scared I’m about to lose her.. He reassured with we’ll treat
her with care and dignity, “Like she’s my own daughter” he said.. I thanked him
told him I had tremendous faith in the paramedics but his NHS Trust CEO Mr Williams is in my view incompetent.. You'll recall the blog on the previous ambulance non-arrival, well I got a half baked response from this individual but as he failed to answer my complaint in full he is in possession of a second letter complaint demanding answers, I think I sent that THREE WEEKS AGO and STILL NO RESPONSE (By warned Mr Williams I am NOT backing down on this I will run you before the Parliamentary Ombudsman yet!) Back to Julie this is not a good place to be right now, I want this to be a nightmare I can
wake up from. I told June to wait out by
the ambulance with Julie’s drug box and Dr's Letter.
I spoke to Phil who was also visibly upset, it’s his only
sister but he realises the best thing he can do is remain here. I left two
minutes after the ambulance but within seconds I could see the houses in the
distance highlighted with blue lights bouncing off them. Whilst I wasn’t trying
to catch them I was closing the distance, two close by sets of traffic lights
both on red, both they took on the red light, I stayed back, cannot empathise
strongly enough stay calm if you are in a situation like this no matter how
distressing… As we left the built up
area although only a mile from the hospital I wanted to be there as they
arrived, I am genuinely concerned Julie isn’t going to make it…. We entered the
hospital grounds together and I peeled off into the car park, I got into
A&E as they pushed her ambulance trolley in through their doors straight
into a trauma unit with locked doors. The A&E receptionist told me to go straight
in to the trauma unit waiting area where June was waiting, we were let into the
family waiting room and hours seemed to pass, no updates no nothing, I’d been
up since 08.00 we got to the hospital at 01.15. and its gone two, I lay flat
down on the bench sets and my eyes closed I could still here people coming and
going, June bless her was still awake too, someone gently pushed me it was a
Nurse, “We didn’t realise you were here come on through”!! I shook my head clear and we were
taken through to Julie in an almost empty trauma unit, a lovely Doctor (Hannah)
asked me a few questions as I walked in to the unit, she was most impressed I’d
got specific dates for events that she wanted to know about. (I’d even brought
all of Julie’s hospital letters etc) I’d say to you all if you can be specific
it helps and saves time. Hannah
explained they’d done tests, that they had put Julie immediately onto
antibiotics and antivirals via an IV drip that initial tests were inconclusive
so they were admitting her to a ward and more tests would be done during the
day.
I went over to the bay Julie was in, the nurses were
excellent. At 04.30 they moved Julie to a ward, I felt it wasn’t fair to walk
onto a ward at that time of night with sleeping patients, I couldn’t contribute
anymore so hugged Julie and kissed her goodbye, she’s in the right place but I’m
still concerned she is poorly…..very poorly.
I drove home and despite having nothing more than a short
power nap in the visitors room since 08.00 Sunday morning I dropped June at our
house and drove straight to my office, this is my busiest week so I had to be
in for a part of it. I hit my desk at 06.00 three hours earlier than normal and
still in the clothes I had stepped in to Sunday morning, I looked anything but the
professional business man I’m meant to be, right now I really don’t care. I
wrote my boss an email I’m sure I’ll be out of here before her arrives and I
did the essential work I needed to do and I was out of here, I got home mid-morning,
I drove to the mouth of the Mersey to contemplate everything, I find I can
clear my mind down here, it’s always been my safety net/bolt hole.
Getting home I dropped Phil off to get his train home, he
knows to expect the worst, I’m glad he’s made the trip distressing as it was
for him, at least he’s seen his little sis…
On getting home I told June I was going for a shower, who
ever invented the electric shower deserves a medal, I made my way to our
bedroom and sat on the bed to dry myself.. The next thing the door bell is
ringing, I’m that dazed thinking back now I don’t know who was at the door or
if I answered it or if June did…
Visiting is at two, I've not received any calls so I can but
assume Julie is stable for now, at this stage I’m updating people close family
I’ve put on notice that I do not think Julie has long left and to brace
themselves for bad news in the near future. On my way back from my office I
called Julie’s dad Bob, it’s the hardest call I’ve ever made in my life. I try
to remain composed but I can’t, Bob had already picked up on my tone and he was
softly wailing too, I think he thought I’d rang to say we’d lost her, Bob is in
his late 80’s his wife is very poorly too, he’s in no position to drive but I
need to get him over here and soon, he deserves to see his little girl one last
time…
The next blog will be published this evening, all I'll say is have tissues to hand.....
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