The weekend
after and we are heading north again, Vince & Denise have a beautiful
second home in a huge and lavishly fitted out Caravan, the phrase Caravan does
this no justice at all, it’s gorgeous. It’s located less than 100 yards from
the sea in a town called Seahouses in the North East on a professionally
maintained site, a beautiful club house, nice food, the owner & his staff
are all so friendly. The Grand National was on so we had to see this. (For
overseas readers, this is probably England’s most famous Horse racing event).
Not far from Seahouses is Alnwick (pronounced An-ick) Castle, a lot of you may recognise it as ‘Hogwarts’ from the Harry Potter movies. They have beautiful gardens here it’s an incredible full day out, Vince & Denise are just incredible, we laugh so much it’s amazing what we find humour in at times, again it’s so hard saying goodbye, the hugs get tighter.
Around this
time Andy had been following Clatterbridge Cancer Charity on twitter, yes Andy
is a twit! Hehehe… I wouldn’t know where
to start with twitter but apparently it’s the greatest thing since sliced
bread. So Clatterbridge Cancer Charity
Wanted Volunteers, he made contact with a lovely young lady called Elspeth and
it had been arranged for him to meet another volunteer on the Saturday at a
local Asda Store, to become one of those
people you lot like to ignore hahaha I’m
kidding I know how generous so many of you have already been on our behalf. Any way the next thing I know Andy came home
and told me he’d volunteered! this was unknowingly going to be the start of an
incredible relationship with an amazing Charity team and the forging of friendships
with three so so special people, two remain unnamed for now, more on you two
later, we know you’re reading lol, your
moments of fame come shortly ladies.
So, on top
of his already busy schedule of working 12 hours a day five days a week,
looking after me, running us here there and everywhere now he was volunteering!
I kind of
challenged him on it; I think the words I used were “Are you mad?” He just said
“I feel I/we need to give something back, Clatterbridge have given me you for longer
than I dared dream of, we owe them a debt of gratitude”, he was as he tells me he
is always right. (If you ever meet Andy,
ask him about the two crispy £5 notes he’s had to hand over to me for being
wrong twice) lol. He argues that’s not bad in all the time we’ve been together.
At times he drives me nuts with his “I know I’m right, I never open my mouth
unless I am” The smug satisfaction winning those two crispy fivers gave me was
priceless! Maybe they need to come with me on my final journey along with my plastic
glasses (to see where I’m going lol) maybe I’ll still get my latte and cake J
Initially it was just Andy collecting, as soon
as I felt well enough I joined in too, the highlight was being part of a team
collecting at The Open Golf Championship, well at Hoylake Railway Station where
most Golf fans came in via, over 10,000 fans a day travelled in and out of
Hoylake. The Saturday the weather was foul but we braved it out, it did affect
donations though. Mersey Rail staff & British Transport Police were
amazingly supportive. Sunday, the final day of The Open the sun shone and the
fans arriving seemed to have a different attitude to donating, all of our
buckets were soon so heavy, even notes were being donated, this felt good, I
truly felt we were giving something back. There will be a lot more in future
blogs on Clatterbridge Cancer Charity and our friendship and commitment to and
with this amazing team; they are a daily part of our lives now.
Late May I
finished my Chemotherapy, again I’ve
lost my crutch, yes I’m scared but I
currently feel ok.
I saw Mr
Farah my Neurosurgeon this was just a fortnight after the Chemotherapy ended,
he is so reassuring, I feel comfort from the consultations with Mr Farah &
Dr Haylock, they have time for me and I can tell they want the best for me.
June 19th
2014, our fourth Wedding Anniversary, it’s a new holiday year for Andy so he
booked a few days off. He told me to pack for somewhere warm I was puzzled, I
still cannot nor do I want to fly. I dragged it out of him hehe, he’d booked us
into a hotel on the island of Jersey, 100 miles off the South Coast of England
and yards (well 11 miles) from France! There was a high speed catamaran, we
could take the car, they speak English, they work on the pound and its Warm! Andy
wanted this to be special, it’s sad to say it but we have to live events like
this like they will be our last, they have to be special but as I keep telling
Andy, special could be a picnic on a blanket in front of our lounge coal fire
toasting marshmallows, it isn’t about grand expensive gestures.
I’d never been to Jersey before, Andy had he worked here many years ago, Oh my god, this is an amazing Island! Its full of history having been occupied by Germany during World War 11, there is an underground hospital built into the rocks chipped out by hand (pick axes) by German POW’s from Eastern Europe. It is a most humbling experience for everyone. In contrast the island is modern, has amazing facilities and restaurants, fantastic beaches and views, our hotel from on high overlooked the fantastic St Brelade’s bay, truly, stunning. The owners of The Windmill Hotel were amazing, so kind, caring and considerate. I’d recommend it to anyone, there are bigger, fancier hotels but truly you will not beat the staff and owners here for their approach to their guests.
Andy had
booked us into a really swanky beachside restaurant for the Saturday night to
celebrate our wedding anniversary, god I felt like Julia Roberts in Pretty
Woman, (my favourite all time movie by the way), No, I did not have snails lol
(slippery little suckers) We are on an Island 8 miles wide 5 miles deep this is
fish territory, I love fish, I had fish, Champagne too. I was stuffed with heavenly food, a downside
with all of my conditions is eating late means I’ll be up to the loo several
times but on this occasion it was worth it.
Next day I
got to sun bathe for a couple of hours, I love the sun, we just do not get
enough and after the last 12 months, well I need to feel the warmth, Andy took
us to Portelet Beach, you cannot see it from the road, there are around 140
steps down to it, I wanted the walk, I wanted to see the beach Andy had so
lovingly described. I had to rest going down and coming back up but it truly is
so stunning and breath-taking. The sand is luscious, the water so clear and not
too deep, we paddled, I never thought I’d get to do this again…. Everything is
such a precious event now. I didn’t want to leave Jersey, I want to go back, I
love it.
Back at home
I’m trying my best to keep on top of things but I’m finding the ironing wears
me out, cleaning too is very tiring, I do bits but I cannot cope any longer, we
found a lady who ironed and she said she’d do a couple of hours a week cleaning
for me, this took a big weight off me physically and mentally, the house has to
be spotless and Andy has to go to work smart each day.
It’s the
first week of August and Emma, Bob, Abbie, Chloe and Ollipop are over for the
week! I’m excited, we are excited! We went to Knowsley Safari Park to see the
animals, we had to take both cars, Andy warned Bob about the Baboon enclosure
that you can choose to drive around instead of through. These animals are the
devil incarnate! You can see them scheming, hmm that car has a nice aerial to
snap off, hmm I like the look of the windscreen wipers on that one! On our
first visit we watched one of these darling creatures on the back of a 4X4 it
leaned down off the roof and discovered the rear screen wash jets… Hmmm that’s
coming off it thought gingerly scratching at it until it was free, oh look
plastic hose, I wonder how long this is….about 10 feet of tubing later it got
bored and jumped off to tell its mates, I think they have a contract with all local
car service departments!
Anyway,
despite the warning Bob ‘accidentally’ headed in to the enclosure, well it was
Emma’s car not his hahaha, It needed wiper repairs afterwards, good job Bob is
a mechanic by trade!
Around this
time I was beginning to get the feeling something wasn’t right, was it just me
or had Andy noticed it, I was forgetting things, mainly words, I’d start to say
something and I’d completely forget what I was going to say, I’d have to ask
Andy who would second guess me, I found it frustrating. I was also still
getting all the tingling sensations I described before. Deep down I knew fluff
was back…..
More symptoms & problems, I was beginning to
shake and I was at times unsteady on my feet, I couldn’t always judge steps and
my left leg sometimes seems to want to do what it wants to do not what I am
telling it to do. This wasn’t right, one evening during one episode Andy called our emergency bleep number and
explained my symptoms; it’s one of the few occasions I’ve seen Andy exasperated
it took fourteen minutes to get an answer on the bleep and the advice was well
if you get any worse go to A&E! I ended up in A&E… The doctor who I
saw despite Andy asking him to have me scanned was adamant he would not; he
called Clatterbridge and apparently spoke to a registrar who told him to double
my steroids! This done I was sent home. Andy assured me “I’m calling Helen in
the morning!” he was furious.
Next morning
Andy called Helen our specialist Nurse, her view on hearing my symptoms was I
needed another scan, she spoke to Dr Haylock and a scan was arranged for a few
days’ time on September 2nd and a follow up appointment was arranged
for September 12 with Dr Haylock.
I’m scared,
I don’t like this, I’m certain fluff is back but in a big way, I feel lost,
alone, confused, my head is full of ‘this is it’, I am petrified.
In between
my scan and appointment I did something really daft, I am meant to take my
Keppra (Fuzzy drug) at 10 & 10, I
took my morning dose and at one pm when I meant to take my steroid, despite my
measured out dosage being in a clearly labelled bottle I took the Keppra again.
I realised instantly I called Andy, I cried I am confused by my own actions,
I’m scared, I would not do this normally. Andy tries to console me but this has shaken
me up, Andy called our GP explained what I’d done, he said not to worry but
equally not to take my 10pm dose either, this meant I was going to go 21 hours
without fuzzy drug. Andy called me back and explained all, I was still crying,
I know I’m not right, I don’t want to end up paralysed or in a coma or to die,
it is NOT my time! I couldn’t wait for Andy to get home I needed a hug, I’m
really very frightened. We hugged and cried, we both knew what was coming…
I saw Dr
Haylock on September 12th. He had my recent scan up on his screen, it wasn’t
good news, and there was clearly fresh and sizeable growth in the same spot as
the original tumour. Dr Haylock said
he’d refer me to Mr Farah my Neurosurgeon, with a resigned sigh as we looked at
the scan he said “It seems the second course of Temodal has been totally
ineffective”, Andy’s analogy was the drug had been acting like a locked cage
but the minute the Chemotherapy ceased the beast pushed the door open and
started creating mayhem. I feel sick to the pit of my stomach, I’m going to die
was all I could hear in my head.
Dr Haylock tried
to assure by adding that there were other options including other Chemotherapy that
we could consider, also surgery and even looking at a trial drug called Sativex
we had previously discussed. Andy had read up on Sativex, it’s a spray that has
its origins in an extract from Cannabis, It is NOT cannabis. It is already
licenced in the UK for people with severe MS. UK drugs are only licenced for
specific usages, it is a lengthy and controlled process for them to be used for
an alternative purpose. Andy had read that the Sativex trial had been
suspended. Dr Haylock explained in medical terms and in this case it meant the
trial had been suspended whilst they reviewed the results, he confirmed just
the day before it had been given the green light to continue and he had put
another patient on it immediately. Andy is a bugger for detail; he knew the
trial was only for use in conjunction with Temodal, the very Chemo drug Dr
Haylock had just conceded had not worked for me. Dr Haylock said true but there
is nothing to stop us trying this on its own if we collectively decide its
right to try it… To be honest I’m not taking this all in, I’ve just been told
the beast is back, I can only think I’m going to die. Andy has the ability to
stay calm and hold a business like meeting with this chaos going on; I
certainly could not have handled this all on my own. Andy had also read up on another trial being conducted
in London, the team there are if Andy has this right taking part of a GBM IV
tumour and adding it to a solution/drug and turning it into a vaccine to inject
into the body which seems to be showing some success in actually attacking and
destroying the tumour! Dr Haylock knows the lead consultant on this trial; he
also explained he’d recently returned from Italy where they were reviewing
another trial. I just want to be out of
here now, I need to cry but not in front of my team, I want my ‘blanky’, I want
to hug my kids…….
Special thanks to Special people, Vince & Denise who are always there, Elspeth & Her still to be unmasked colleagues K & L lol all part of 'Team Clatterbridge Cancer Charity', a very special thank you to Helen our Specialist Nurse for listening and acting so swiftly.
Special thanks to Special people, Vince & Denise who are always there, Elspeth & Her still to be unmasked colleagues K & L lol all part of 'Team Clatterbridge Cancer Charity', a very special thank you to Helen our Specialist Nurse for listening and acting so swiftly.
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