I haven’t wanted to write this one because in many senses
writing it makes it all very real again, but I’ve thought about it a lot and I
don’t think there will ever be a right time, and bear with me there is a
rainbow at the end of this story!
So back in April I was minding my own business, having a
super day with my Niece Lily and I got a call from an unknown number, no biggie
I thought as it’s probably a call for PPI or some random rubbish like that.
Unknown number left a voicemail and I thought that’s weird so I listened to the
voicemail and this was my stomach dropping out of bottom moment, it was my
Neurosurgeon’s Secretary…I was in the middle of softplay with my Niece Lily at
this precise moment and I didn’t know what to do as I felt numb and a bit
dizzy, thank goodness for all the soft surfaces! I called the Secretary back
and she told me that my Surgeon wanted me in the next day. This was also a
shock as I know that Surgeon’s generally aren’t going to call you in to talk
about the weather so with a gut wrenching feeling I said yes.
The next 12 hours I don’t really remember. I was reeling and
also probably quite snappy and short with everyone, I’m sorry, I was frightened
and not because I didn’t know what to expect more but because I have had the
absolute pleasure of living the last 3 or so years with not too many symptoms
that have stopped me doing things and the thought of going back to the
beginning and everything post-surgery has pretty much been on a loop somewhere
in my mind since this day- not all day necessarily but one moment I can be ok
and the next I’m not, it’s as simple as that. To people I have cancelled on or
not spoken to recently, I’m sorry, hopefully some of the why will start to make
sense.
So, the day of the appointment we went off to London. It’s
always afternoon isn’t it for maximum stress factor lol! Mum and I went in and
to begin with my Surgeon was very pleasant and talked how it was an 18-month
post review, I had to remind him that it was almost 4 years in October as
thankfully we have not needed to meet since then really as I am looked after by
the Neuro Oncologist in his team, I think he was shocked in some ways as I have
been living well during this time. In a super strange way, it was actually
really nice to see my Surgeon. George is such a good man with a huge heart and
he always makes me feel safe, which I guess is pretty crucial for a Surgeon.
Anyways then the bigger news. In George’s opinion, the little blighter has been
growing since around January 2015. This was a huge shock as apart from the ‘scanner
error’ debacle that we had back then we have always been told it’s ‘stable
changes’ e.g. the cavity if you like is adapting but not necessarily with
tumour but just changing in shape slightly as you would expect the brain would
as it’s a relatively flexible structure.
The next part was another difficult moment as in George’s
opinion he believes that I need another surgery and asap. To clarify at this
point the whole tumour has not regrown, its’s essentially a part at the back
border which is extending into the SMA region (responsible in the large for
movement) So effectively come May I should have been operated on. I was by this
point quite emotional as it felt like in 24 hrs everything was up in the air
again. I asked George if we could have a little more time purely because we had
a lovely family holiday booked for May, Jamiroquai tickets that my sister Holly
purchased for June and then a day at Reading Festival in August. George agreed
that it was important to go to these things as post-surgery anything loud and
crowded is essentially out of the question so he agreed to meet with me again
in August and plan from there- it’s likely to be surgery in September, October or November,
but currently I do not have a date. George was happy to wait within in a 6
month or so window but not over a year or 2 years as this runs the risk of
further tumour progression and for now it is still appearing like a Grade 2. For
anyone interested in the surgery side, last time I had what they call a maximal
resection- so as much of the tumour taken away as safely possible whilst awake
(approx. 95%). This time around George wants to attempt a supra total
resection- effectively taking away what has regrown and a larger border whilst
awake again. This is still not a cure but I am hoping with every fibre this
will keep me well again for as long as possible and with every day hopefully we
will reach a cure faster…I have to keep the hope going at this stage.
Some of you might be wondering about the discrepancy between
my Surgeon and my Neuro Oncologist’s opinion- I guess what we have come to
learn is this: the Neuro Oncologist is treating me from a symptomatic perspective
of which bar headaches and other oddities they have been limited e.g. even with
some slight change they are not concerned. My Surgeon on the other hand he is
looking (even microscopically) at anything that can be operated on and always
would rather remove anything as safely as possible, regardless of symptoms etc
as currently for lower grade tumours surgery is still the main way to treat
them. I hope that makes sense. I still feel a bit angry about the delay in
being told certain details but equally I hold on to the sentiment of “ignorance
is bliss” because it’s meant we have had a lot of time to just get on and enjoy
our life and I never take that for granted because having met so many people
within the brain tumour community, I know this is a luxury and I am beyond
thankful for this time.
So as it would turn out Jamiroquai got cancelled due to Jay
Kay needing surgery so I have had a few days where I have wondered shall I not
just get on with it but the other part (and don’t laugh all my family and
friends who know me well) I am trying to get the weight down again as I somehow
let me foot off the gas and thought sod it, have emotionally ate my way through
things again and this time I know I just have to do something pre surgery and
after surgery as I need to make a change for life. Don’t get me wrong this is emotional
even thinking about changing the habits of a lifetime because I am an emotional
eater, BUT it’s very important to my overall health and also supporting immune
system to ensure I am in the best possible physical shape to fight the little
B! I also have one last special thing to do before surgery which is another
holiday with Carl and somewhere we have always wanted to go, I’ll update on
that nearer the time.
So that’s about it really. I don’t have any other tumour
related news. I was having a super bad bought of headaches recently but
thankfully these seemed to have passed, whether they will be back again I don’t
know but I am relieved when they do ease up as they are akin to what they call “ice
pick headaches” and therefore short in duration but intensely painful, there
are not many ways to treat these either as you never know when they might
strike. I am putting them down largely to the fact that we had an insane few
weeks of humid hot weather and my brain doesn’t like going over about 25
degrees, especially in this country, a pool etc and I am sure I would be fine!
Ha! Anyways as I write this I am staring out at grey skies and rain and a
maximum temperature of 18 degrees, but you know what I think I am ok with that…sorry
Summer lovers!
Regarding what I said earlier I hope this might make sense
to some people that I haven’t told or if I have cancelled last minute or not
done something as scheduled or the opposite if I have just turned up it’s
because right in this very moment we’re back to living in a bubble again and
that mainly consists of Carl and I and our family and of course good friends. I
haven’t had the strength this time to call or write to all my friends individually
so a bit like the reason for starting this blog in the first place, this is my
way of telling you all and I hope you can understand that. Xx
Ok so on to the rainbow part- my lovely Carl came home from
work one evening and said, “I’m doing a Sky Dive for Brain Tumour Charity”- I
have always known that Carl is an adrenalin junkie and Sky Dive was up there on
his list of things to do but we didn’t even discuss it, he just went and arranged
it and so there we are, all being well weather wise he will be jumping in
September. We initially set a target of £500 but within 48 hours we had smashed
that so we have upped it a little with the hope of raising as much as we can
for this fantastic charity. For anyone who would like to go and sponsor him
that would be amazing so I will leave the link here:https://www.justgiving.com/fundraising/carl-isaac
Thank you to everyone that has supported us so far and just
generally supported us on what can be a right difficult journey sometimes. As
ever I have hope in my heart and a smile on my face, I do have my moments and days
but just trying to keep positive and focus on the good things.
Love to you all,
Gem xxx
