Andy here writing this one with the lovely Mrs ‘Foxy’ Shute, (Frog indeed! Uh! ) You’ll have gathered by now we are both quirky in our own little ways especially when it comes to our love for each other.
To start this blog edition we’ve said from the outset we
want to help others on this journey, we know our approach won’t fit well with
everyone and at the end of the day, if you are in this position you will want
to do things probably your own way and that’s great, our concern is those who
are too scared, too focussed on the bad news delivered to consider all angles.
A great starting point is that from day one of this enforced
nightmare journey we promised each other we would not change towards each
other, our relationship blossomed through our quirky humour and ways so why
when we needed to be as united as possible would we do different? We asked all of our family and friends to
treat us normally too, the last thing we need is pity, we need support and to
date every single person has stood shoulder to shoulder with us on this, we don’t
get pitying looks or as can often happen when one person is seriously ill
(Especially if say wheelchair bound, I’ll add Julie is not) is that they can
become the ‘third person’ in a conversation or discussion. The medical
profession has come on leaps and bounds in this regard, I can say that when my
Father who also died of Cancer/Brain Tumours, also had Brain Surgery some 30 years ago his
Doctors would stand at his bedside and talk to ‘us family’ about him not to
him, we knew no different then and Consultants were on pedestals and certainly
not to be challenged, it wasn’t the done thing. These days from our experience everything
is so, so different. Consultants, Surgeons, Nurses, Charity Staff are focussed
on their relationship with the
Patient but not at the expense of the family. Only this week Julie had an appointment with Mr Farah her Neurosurgeon & Alison one of his excellent Specialist Nurse Support team, more in a future blog on this meeting but my Mother was staying with us for a few days and she was invited in too and welcomed into the consultations, she was amazed at how different things are compared to our first Brain Cancer experience with Dad.
Patient but not at the expense of the family. Only this week Julie had an appointment with Mr Farah her Neurosurgeon & Alison one of his excellent Specialist Nurse Support team, more in a future blog on this meeting but my Mother was staying with us for a few days and she was invited in too and welcomed into the consultations, she was amazed at how different things are compared to our first Brain Cancer experience with Dad.
So back to us treating each other as we always have, we
truly do, Julie will always be ‘Foxy’ to me, as previously mentioned we met
over the internet and her ‘nickname’ contained MeFoxyWitch, I abbreviated it to
‘Foxy’ and like a lot of things with us it lasts right up until today. We still
disagree now and again and I’m still occasionally told to ‘go & boil my
head’ (Well actually the real phrase she vents at me isn’t apt for here
hahaha), we never fall out for long, we have different opinions and views and
we respect each other for them.
What else? Well in the early days you will have so much to
take in so many questions, so many things to consider, for example:
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| EddyBear |
Other things were bugging me, Julie didn’t want to know how
long she had left and I desperately ‘needed to’ would it be weeks, months or
years? I had to respect her wishes and her medical team were rightly not going
to tell me. Thank god for the internet! I researched like mad, the reality is
there is in Julie’s case no specific answer but there are guidelines based on
surviving patient data, it wasn’t that I wanted to set an alarm clock but I
needed to have some control back on what was happening in our lives, I wanted
the best for her however long we had left together, should I 'blow our savings' or should I save them for a longer journey.. If you are going to search
the internet I’d recommend sticking to respected Cancer & Medical sites,
everyone has a view or they’ve found ‘the cure’, you’ll read of certain fruits & plants
being miracle cures – they may well be for certain types of Cancer but not
necessarily your specific type of Cancer, a significant number of drugs we take
daily derive from plants or plant extracts. A serious warning, do not dabble with any kind of
drug or take anything anyone else tells you is a great idea without first
discussing it with your Oncology Team. Think logically when someone tells you of that 'miracle cure', IF they were so miracle why have drug companies not brought them to market and making their usual fortunes out of them? The next blog talks more on Chemo drugs.
I had to consider hospice care, family time together, I’ve
never disclosed this to anyone before not even Julie, but I had to consider
should I be prepared to discuss her returning to Grimsby where her Children
are, we are 180 miles away, what was going to be the right thing to do, was
there a team there equal to what we had for Julie here, my head was in turmoil,
I needed my thought process to be clear though. Julie hadn’t even started her
treatment and it was question after question that was being raised by myself within my
own head. I needed an A4 Pad I wasn’t going to remember half the things that
were flying at me so I wrote them down ready to ask whoever I thought could
answer them. Most (questions) in the early stage were asked of Dr Brian
Haylock, Julie’s Consultant Oncologist. I have to thank him for his patience
with me, I’m terrier like at times and if I had read something relevant to
Julie’s specific Cancer type I needed his considered opinion, and in turn that resulted in more
questions! Poor bloke, one day as we sat in a consultation I opened my pad and I
saw his shoulders drop, he could see my list, reading body language has been a
vital part of my varied careers and so I smiled inside as I knew what he was
thinking.. I had questions, he had a lot
of answers, my focus was on Julie’s care so I was going to get my answers, even
the odd glance at a watch (smiling as I recall these events) wasn’t putting me
off my agenda. Equally I knew when enough was enough. We were and remain
professionally polite throughout Julie’s consultations. I’ll never be able to thank Brian Haylock enough
for his professionalism and his desire to deliver for Julie what is called ‘Gold
Standard Care’.
I’d recommend to you if you’re walking our path, make notes,
you’ll come out of appointments and think “I wish I’d asked”, or “did he say…”.
Even at times after an appointment as we chatted things through Julie would say
“Dr Haylock said..” I’d clarify from my
notes that something slightly different was said.
I work in industries where jargon seems to rule, it drives me
nuts; phrases like ‘Blue Sky thinking’, ’Key Performance Indicators’, ‘Thinking
outside of the box’ and daft old me thought ‘dashboard indicators’ were
something that came only on cars, you’re probably as puzzled too but yes some people actually talk this pompous nonsense. I have though
picked up some great phrases and whilst none of the above help me in my quest
alongside Julie the following two I live by, they might help you…
- “Fail to Plan, Plan to
Fail” Do your research, understand what is important to you and make the
necessary plans, no one else will understand your own needs better than
you and if you plan, things will run smoother. Go into appointments with your questions ready is a great example - leave space to write your answers.
- “We have TWO Ears, We have TWO Eyes and we have ONE mouth – Use them in those proportions.” What’s he on about now? It’s simple really but very hard to do for most of us, we all want to talk more than we want to listen, (Julie just said she does it all the time lol) its human nature and when we listen are we just hearing or are we truly taking in what we’re being told? In meetings listen to what is being said and make your own notes as you listen, you’ll have more questions but asterisk them, let your Consultant, Doctor, Nurse, Radiographer finish and then use that mouth of yours. It has stood us in good stead I hope it does you too.
Thought I'd finished, some 'hot off the press news' though. Julie's Blog has made the news. I'm truly proud of 'My Foxy'. Have a read, click the link! Wirral Globe Article on Julie's
Please keep spreading the word and sharing the blog.
With Thanks to Emma Rigby, Senior Reporter, Wirral Globe.
Please keep spreading the word and sharing the blog.
With Thanks to Emma Rigby, Senior Reporter, Wirral Globe.
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