I have to try & motivate myself
and I need my network of friends to get me through this week, Andy has to work,
it’s a dilemma for him, he knows how ill I am but he has to work, we have bills and no
matter how long I have remaining, Andy needs a job now and in the future, I
appreciate he cannot put his work life on hold, he raised it in an earlier blog
it’s frustrating that a couple can get maternity and paternity leave yet Andy and
others in the same situation cannot get similar blocks of paid time off.
Thank goodness for friends, I’ve
mentioned before that over the years my health has been problematical, on top
of currently seeing a Neurosurgical team and an Oncology team for my Brain
Cancer I have to see another two consultants this week!
Monday I have to see my Rheumatoid
Arthritis (RA) Consultant Dr George for I have ‘RA’, I was diagnosed around 14 years
ago, I had a collapsed lung, rushed in to hospital, It wouldn’t re-inflate and
in doing tests found out part of my lung had gone ‘spongy’ on taking a biopsy
the results came back that I had ‘RA’. I’ll let you read up on Rheumatoid
Arthritis but a summary is it’s an auto immune disease, you
have to be on drugs for life some not too pleasant I can tell you. So I need to
see Mr George and I need a chaperone…
Well Its long overdue it’s time to
introduce you to Olive, Letty or Collette, she gets called all things but she's always OLIVE to me, she is my
soul mate, my confidante, my shoulder to cry on, she makes me laugh, she puts
my life into perspective and she’s always there for me be it for a bit of
retail therapy, or as my wedding day co-ordinator or just as a mate who’ll come
with me to my hospital appointment(s)… I’m going to do a separate blog to
feature Letty, it’s not fair to include all I need to in this particular blog,
for now its suffice for you to know how special and important this lady is to
me….
Letty and I headed to the hospital and
I saw Mr George, I have to say he has a different manner to a lot of
specialists but he is amazingly caring to my RA condition and also
understanding of my Cancer diagnosis and prognosis. I’ll shout it from the roof
tops that either a lot of nonsense is spoken about the quality of UK NHS care,
or I have been beyond lucky in my experiences and trust me in the last ten
years I’ve seen enough NHS Doctors and hospitals to know no matter the
buildings, the conditions or moral in the NHS my Doctors, Consultants and
Nurses are OUTSTANDING, I salute them all!
After the consultation
we headed for a bite to eat and it’s time for my lunchtime steroid before
we head home to continue our day together. I carry my day time (liquid) drugs around in tiny tablet bottles, I'm sure people stare at me and think 'Druggy'..
Tuesday was uneventful until the
evening and I had another seizure. I am at the hospital tomorrow to see my
fourth Consultant in two weeks for my fourth condition! Not long after I met
Andy I was diagnosed with Ulcerative Colitis, it’s a NASTY thing, its very
similar to Crohns disease, both attack
your intestestines, again I’d say google it. Mine came on quickly and even the
most powerful drugs could not bring it under control, without being blunt about
it the loss of weight had me almost skeletal and had action not been taken well
lets just say I wouldn’t have been here to get Brain Cancer… I was still living
in Grimsby then, the end result of my condition was I had to have surgery to
remove my colon aka the large bowel, I ended up with a colostomy bag on my
side. Prior to the operation I spoke with Andy, this was going to be life
changing, I told him if he wanted to walk away from this now was the time, he didn’t
hesitate to reply he wasn’t walking away from anything, we were in this together…
So vain old me size 8 in a skirt size 10 in a top with I was told a body to die
for was suddenly having a very unattractive attachment added to my body with so
many downsides but at least I was alive and I was loved by Andy. Bizarrely the
colostomy bag has certainly helped in terms of my medication. We soon
discovered that certain drugs including those coated were passing straight out
of my body without dissolving! A lot of my medicines are now prescribed as a
liquid…
I moved to the Wirral to be with Andy
and I was referred to a Colo-rectal Consultant called Mr Walsh, the kindest,
softest spoken and nicest mannered Consultant I’ve ever dealt with, his soft
Irish voice helps too lol. Mr Walsh asked me back then, “So what are we going
to do with you then?” I looked puzzled and he covered all of the options including
building me an internal Ileal reservoir which would enable me to lose the bag
and start using the loo again like most of you. I was, we were gobsmacked! I’d
been told in Grimsby that my op was irreversible! Suffice to say around 9 years
ago Mr Walsh changed my quality of life after a six hour operation by connecting everything back up! I'm me again, lol I am soooo vain hehe.
So, I’m due to see Mr Walsh on
Wednesday morning, I had no one to go with me and I’d have to bite the bullet
and get a cab and go on my own, this I was not looking forwards to but I cannot be a scaredy-cat (made up word lol) all my life. I woke up, I’d had a bad night after the
Tuesday evening seizure, I was shaky. Andy took one look at me and asked what
time my appointment was 09.15, his response was “I’m taking you; you cannot go
on your own.” I felt so relieved to hear him.
We arrived at the hospital in plenty
of time and Mr Walsh was on time, I'd not seen him for over three years. We waited in one of the examination rooms for
couple of minutes before he appeared and pulled a chair up in front of me, his
softly spoken opening words were “I’ve just been catching up with your file and
you do nothing by half do you Julie?” I shrugged my shoulders “It’s life Mr
Walsh” he replied “I know Julie but why is it some people go through life with
no illness and yet you have to contend with all of this?” He didn’t mean it to
be but with his soft spoken Irish accent it felt like sympathy not empathy. I
replied “Don’t feel sorry for me Mr Walsh, it is what it is and I have to deal
with it” He’s kindness itself. We got on to the topic of my bottom. I’d been
passing a small amount of fresh blood; my belief is I’ve got an internal pile.
Mr Walsh wanted to give me an examination today but I was very shaky and
frightened at the prospect for if I had a seizure with a camera up my backside
lord knows what chaos would have followed. Mr Walsh was understanding and
suggested if I could go with it today he could get me on a course of treatment
from today but he would respect my decision if I elected for him to do it in
theatre either under a general anaesthetic or sedation but these options would
cause a delay of around a month. He left us to think it over. I said to Andy, “I
can’t do this today, I am scared”. Andy knocked the door to Mr Walsh’s office
and informed him. Knowing I was seeing Mr Farah my Neurosurgeon the following
week he asked us to enquire whether Mr Farah felt I should have general
anaesthetic or just sedation. We left telling him we would get back to his
secretary asap.
Andy dropped me home and headed in to
work, I’m full of scaredeness (another made up word lol) , I need to get a grip I cannot spend my life
telling others “Don’t feel sorry for me” to then spend my days feeling scared
and sorry for me…
I’ve got next week to look forwards
to as well. On Tuesday I see Alison my specialist Neurosurgical Nurse,
Wednesday we have Andy’s brother Nigel, his wife Nunu and Andy’s Mum Maureen
with us overnight. Nigel & Nunu have closed their restaurant in Taiwan for
the Chinese New Year and we want to show them where their and their customers
donations end up and how they are spent, also to meet our fantastic friends in
the Clatterbridge Cancer Charity Office. On Friday I am seeing Dr Haylock &
I suspect Helen.
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