OK, so Blog 3 and I should be getting used to this… I’m not!
I’m a right side of the brain kinda gal… I find comfort in figures, logic,
balance… My twitter username reflects my
inner nerd… the ‘Rodin_Rocks’ username pays homage to the beloved sculptor Auguste
Rodin, the creator of my favourite artwork… ‘The Thinker’.
So I write for hours, but spend more time correcting
spelling mistakes, understanding the message and weighing up the benefits of
sharing such a personal experience. It’s
a cathartic process, but an extremely stressful one. Clicking that button to post the blog is nerve
wracking and I always spend the next few moments worrying if I will cause offense, overshare or send you
guys into a boredom induced coma.
However, the
thought occurred to me that all authors write from some personal experience and
to write for an audience, in a one size fits all blog about cancer would be impossible
and entirely misleading. I cannot escape
that my blog will be a very personal account and there is no right or wrong; the cancer is individual to my body and my mind-set reflects my personality.
The next few blogs
will be slightly different; I’ll pull back the curtains and allow you to peer
through the window of my journey so far…
I wish I could say that I’d been ‘breast aware’; that I was
observant, I discovered a lump and the cancer was caught early. The truth is… I have no clue when this cancer
started or whether I could have detected it earlier. I do know that I delayed when I did have
concerns and I got things wrong… on several occasions!
The first obvious sign I had of trouble was a sudden change
in my right breast. It wasn’t a lump I
could easily distinguish per se; overnight my rather wobbly chicken fillet had
diversified into an over-cooked Gordon Ramsey nightmare. I have no doubt my subsequent mistakes would
have qualified me to be a filling in one of his idiot sandwiches.
Unfortunately, the change in my breast coincided with my monthly
cycle and whilst I was concerned, it provided an opportunity to explain it
away. The mass subsided slightly after a
week and had given me sufficient excuse to delay the distress of a breast
exam. A further week passed, but the
mass hadn’t relinquished; it was sore and I was becoming increasingly fatigued.
I conceded that I needed to see a
Doctor.
My GP practice had a four-week lead time for an appointment,
so I rang requesting an emergency appointment, as soon as the phone line opened. I was given a ten-minute time slot and left
immediately; however, luck was not on my side as there had been an accident on
the A470. I called the Doctors as soon
as I was aware of the stand-still and asked for a later appointment. There was zero flexibility; arrive later than
your appointment and you will not be seen.
My usual sub ten-minute journey to the doctors turned into a 40-minute
crawl, which saw me arrive two minutes over my allocated slot.
Stuck in traffic with the prospect of missing my appointment,
I had time to contemplate the implications.
I arrived for my appointment physically shaking, making a final anxiety
laden plea to be seen… I was prepared to wait three hours until the end of
surgery if need be. The Swiss Guard
receptionist was more uncompromising than a club bouncer; she kept time like
Omega and was as unforgiving as Roger Federer on match point. With zero concern for what prompted the
request for an emergency appointment and no interest why I’d be so visibly
shaken, I was unforgivingly turned away.
I sat in the car trying to ease my nerves and in trying to
overcome my anxiety I persuaded myself to return to a calmer default position… I
was probably worrying over nothing, I was only 35, what are the chances it’s cancer? The fact is, fear and anxiety have a very
convincing way of allowing you to avoid the uncomfortable truth.
Sunday 21st August 2016 I awoke in discomfort, I
noticed a very distinctive lump, a golf ball like swelling under my right arm
pit. I realised it was my lymph node; it
felt angry and manoeuvring my arm caused physical discomfort. My nagging doubts had become instinct and
waking that morning I instantly knew what I was facing.
I wasn’t quite sure what options I had available to see a
Doctor on a Sunday. Stubborn as always,
I carried on my day as if nothing had changed; I played five-a-side football in
goal, taking impact blows to my chest and shoulder that only served to increase
its rage. For me the distraction was far
more important than the pain; although this didn’t stop me whining about the
aches at the pub quiz that evening. I brushed
it off as a pulled muscle or infection; I still hadn’t opened up to anyone
about my concerns.
The next day was the first time I mentioned my symptoms to anyone. I have worked for my line manager for over
ten years; he’s the most intelligent and rational person I know and most
importantly a good friend. I described
the lump under my arm pit and gleaned all the possible explanations.
It was enough for me to realise I needed to go to the
Doctors, but after the previous debacle I couldn’t face returning to my
GP. I picked up some forms for a new
practice and returned them completed next day.
The surgery required 24 hours for registration, so I returned 8am the
next day; however, I had forgotten it was ‘Mother and Baby’ day and the surgery
was closed for appointments.
I was sat in the car park of the surgery and felt
overwhelmed. How had I let everything
get away from me? Why the hell did I wait?
I text my friend, Claire and finally had the sense to tell her
everything. She was supportive but firm…
“it’s probably nothing, but you have to see a doctor”. She brushed aside my excuses of how busy I
was with work and made me promise I would see someone.
On reflection, I should have opened up to someone
earlier. A simple promise made to a
friend to see a Doctor, over-riding any previous anxiety of a breast exam. I arrived the next day an hour before surgery
to ensure I was seen first; the fact I was allocated a male Doctor barely
registered on my radar. The change in
psychology was such a strange thing.
I was examined by Dr Lewis.
He is an older, distinguished looking gentleman; he doesn’t immediately
strike you as warm, but he spoke quietly and directly, with a re-assuring
confidence. He told me that he was
sending me to the Breast Clinic for an “urgent mammogram” as he was
“concerned”. He never mentioned the word
Cancer; but you can often glean more from the unspoken and I suspect my choice
not to ask questions was understood exactly as it was meant, as a sense of
acceptance.
He told me he was prescribing anti-biotics on the off-chance
the lymph nodes had swollen due to infection. It was the ideal opportunity to allay my mother’s
fears. I would never lie to her, but I didn’t see the point in immediately
burdening her with worry. I messaged her
to say I’d been prescribed anti-biotics and allowed her to fill in the gaps…
she did and presumed I had an infection.
I had a phone
call from the Breast Clinic within 24 hours and was given an appointment for 22nd
September. As an Auditor for the NHS, I
know a ridiculous amount of seemingly useless information, including waiting
list rules… urgent cancer referrals should be seen within two weeks and
definitive treatment started within 62 days.
The appointment for my scan was booked for four weeks from my referral; it’s
possible that with my knowledge of the NHS that I could have been seen earlier. I’m also conscientious enough to understand
that any patient prioritisation comes at the cost of others, my annoyingly
immovable moral compass would never allow it.
I considered private treatment, but a mammogram is the only process
available without private medical insurance.
So, I could have had a formal diagnosis earlier, but the lead time for
treatment would be the same… 62 days.
I waited 63 days from referral to treatment, the start of my
chemotherapy. It may not seem a long
time, but it felt like an eternity. I
could see the cancer growing over this time; the mass was getting larger, one
lymph node swelling turned into two and it was becoming increasingly painful to
moving or lie down. You can’t escape
thinking about the cancer when you are in constant discomfort; having a physical
reminder that it’s growing, getting stronger and that it could be
spreading. I wasn’t sleeping and I was continually
fatigued, but I tried my best to carry on as normal. I continued to play football… I notched up
two whiplash injuries, five misaligned discs in my spine and only called time
after my leg bizarrely buckled mid-jog.
It later turned out I’d torn my MCL, ACL, Meniscus and fractured my
Tibia… it was such a completely freak injury.
I was starting to get increasingly frustrated with my
body. Sometimes I’d get the feeling of
hating my body, wanting to physically rip the Cancer out. It was totally irrational, but just a
manifestation of the frustration of wanting to fight, but feeling helpless.
The tiredness
was becoming increasingly difficult to manage… I’d be watching rugby and the
scoreboard would change without me even registering anything had happened, I’d
totally lose track of minutes of conversations.
My mother had started to notice my vacant demeanour, so I reluctant told
her about the mammogram about two weeks before my appointment. I didn’t want to leave her in a position
devoid of hope, so I stayed positive about the options to protect her from the painful
and helpless wait.
I booked a
flight out to Castellon for the week and return home the day prior to my scan. I had been exhausted and the break provided
some beautiful moments of respite; the amusement of watching the kids learn to
skate and I would never get bored of watching the sunlight quickstep over those
Mediterranean waves. My Aunt’s family
didn’t know my predicament, but their hospitality was fantastic and people’s
propensity for kindness this last few months continues to amaze me.
My friend
Claire picked me up the day of my mammogram.
I was relaxed and Claire has that effect of instantly making you smile -
all my nicknames for her reflect her colourful personality… ‘Jelly Tots’, ‘The
Happiness Elf’… you get the idea. The
Breast Clinic is a sombre place so having someone who can brighten the
gloomiest of rooms was ideal. We sang
and joked about the striking hospital gown, which was an amusing deviation from
my Ralph Lauren attire. I am rather
shamefully, a brand whore.
I had been
pre-warned that the mammogram was likely to hurt; it didn’t really register it
as being particularly painful, more uncomfortable. I was called to see the Consultant approximately
an hour after the scan, where she confirmed that the mammogram had shown masses
in both breasts. A physical examination
followed and the Consultant drew an outline of the area that required further ultrasound
scanning and biopsies. I knew the mass
was big, but this was on a different scale to what I imagined; it was like a ‘Britain’s
Biggest Loser’ type reality check… going to the first weigh in and realising
you were 100 lbs heavier than you thought… except I did have the upside of
eating 100 lbs of cookies.
I was
directed back to the waiting area for another hour before being called for the ultrasound. The Radiographer only spoke to confirm my
details and direct me where to move, the accompanying Nurse was a little chattier. I felt the cold pressure of the sensor moving
over my chest with periodic bleeps to signal that images were being taken. It was a completely uneventful procedure… I
only wished the second part of the process could have passed without incident.
The
Radiographer talked me through the process of collecting biopsies, she administered
three anaesthetics injections to allow her to collect several samples from the
breast and lymph nodes.
The biopsy needles
are intimidatingly large; when pressed they make a click which instantly coincides
with a sharp pinch from the collection site.
The first two
biopsies were painless; however, the third was to provide one of life's more memorable
moments. The placement of the injection
site was somewhat miscalculated and the pathway of the needle cut through a
particularly large cyst.
The click of
the biopsy needle prompted an explosion of a particularly disgusting substance,
with an appearance midway between semen and urine. Meticulously overseeing the injection placed
the Nurses face in direct line of fire. The
image of a perfect stranger, plastered in my tit juice will quite simply haunt
me for all eternity. I think another
three or four biopsies were taken, but I lost track whilst I was reflecting how such a volcanic mishap could only happen to me.
I know this illustration
massively over-shares and pre-cancer this story would have remained forever
untold. However, it also perfectly demonstrates
the shift in my attitude, from being afraid to talk to anyone about anything,
to understanding the benefit of openness and honesty. I could have felt too embarrassed to talk
about this kind of experience; but instead I recounted it as a perfect example
of the need to laugh, no matter how seemingly undignified or difficult things
get.
After the biopsies,
I waited a further hour before returning to see the Consultant. This time she was accompanied by the Lead
Breast Nurse; I knew this was not a good sign.
They both sat sombrely as the Consultant explained that they had
identified lumps in both breast and the lymph nodes. They were satisfied that the left breast was most
likely to be a cyst; however, there was “a lot going on” in my right breast and
the lymph nodes were “aggravated”. I was
not given any indications possible diagnosis; they preferred to suggest that
they were reliant on biopsy results. I
was asked if I had any questions… I did… I know how experienced these people
were and I knew they didn’t necessarily need those biopsy results, so I was
direct… “in terms of what this could be… what are my options?”. The Consultant recited one possibility… cancer. I was encouraged to bring
someone with me for the results.
As we left
their treatment room my thoughts immediately moved to worrying about how I was
going to tell my family. For a brief second
I felt overwhelmed, my eyes momentarily welled as I turned to Claire. She hugged me just enough to hold the pieces
together and we continued towards reception, talking to the receptionist as
cheerily as we arrived and arranging to return the following week for my results.
There was a
moment of silence walking the corridor to exit the hospital; I smirked at
Claire and commented in jest… “well she was pretty damn grim wasn’t she”. I joked that I’d asked an open-ended question,
anticipating an answer that could give a miniscule of hope… “maybe it’s a cyst
or a benign tumour, but no… CANCER”. We
turned to each other and giggled… “bloody grim reaper”.
I’m a sensible
person, I knew the gravity of my diagnosis and it wasn’t that I was burying my
head in the sand. You can’t always
change things, but you get to choose how you reacted to them.
I have a
single tattoo that recites the words of a poem “The Object”, by the little known Mexican
feminist Alma Villaneuva. It’s a poem to
Mother Earth, but for me it is more a life philosophy. One line implores you to “laugh, cry, but
laugh more than you cry”. I have cried;
not necessarily when you’d expect or for the most obvious of reasons. However, I have laughed so much more, through
the inappropriate, ironic and my own basic idiocy.
We left that
hospital laughing and sang most of the journey home. It was only when we stopped outside my home
that I paused to ask a more serious question… “based on what they said what are
my chances this isn’t cancer?”. Claire
is the most optimistic person I know and her response erased any uncertainty… “I
don’t think we need to think about if anymore, we just have to focus on beating
this”. The way she said we gave me hope;
it feels so much better when you don’t feel quite so alone in this battle.
I sat on the
wall outside my home for five minutes, contemplating what I would tell my
mother. I didn’t mention Cancer, but I
did tell the truth… they couldn’t give me a formal diagnosis until the biopsy
results the following week. I proceeded
to cheerily recount the unfortunate biopsy incident and my mother drew the
conclusion it was probably just cysts.
As the days wore,
my Mother went from a worried wreck to full of hope… it was becoming a
dangerous shift towards over-optimism. I
waited until the Sunday evening to explain that I hadn’t given the full story.
I can’t begin
to describe the agony I saw in her eyes when I told her that evening. A parent’s life is dedicated to their
children, to keep them happy and safe. I knew she’d be shattered, I knew she’d feel
helpless and I couldn’t say or do anything to stop this. I didn’t cry telling her; it was so much more
important to show her that I was strong, that I’d accepted it and she didn’t have
to worry.
I have cried
plenty of times whilst telling my family about my diagnosis; it probably
accounts for 90% of the tears I’ve shed over these past few months. I don’t have children, but I have a very
motherly instinct and if I could have been spared any moments of pain, these
were the times.
I had known
for quite some time that I had Cancer, so for me every step of the diagnostic
process was a step closer to treatment; but for others it felt more like body
blows.
A week later
I had my formal diagnosis… the same people convened in the exact location we
had the previous week, with that all too familiar air of acquiescence. The consultant immediately confirmed that the
biopsies had identified cancer cells in the breast and the lymph nodes.
I was conscious
that delivering ‘bad news’ must be the worst part of medical professional’s job,
and in a bizarre role reversal, I was reassuring them that I already knew and
that it was going to be ok.
I was briefly
guided through the processes that would be followed over the next few weeks and
months, scans, chemotherapy, surgery and radiotherapy.
I was warned
it was going to be a rollercoaster and that I should consider getting some independent
support… someone I may not even like, so I’d have the freedom to talk about
anything I was afraid to say to family and friends. I reassured her I have amazing family and friends
and that I didn’t particularly like Claire and she couldn’t stand me… so we’d
be fine. There was a discomfort in the
room, my mixed of calm confidence and humour probably felt somewhat like seeing
a polar bear sunbathing in the desert.
I spent the
next few minutes reassuring them that I wasn’t deluded and apologised if my
reaction was somewhat unusual. They
assured me that it had been one of their easier consults and we left with a
ream of information in hand.
So that was it, some three or four months after my first
concern, I had been diagnosed with Breast Cancer which had spread to the lymph
nodes.
Responsibility
for the delay in my referral to the Breast Clinic and my ultimate diagnosis is
firmly on my shoulders. I knew my
original GP Practice hadn’t quite embraced NHS values and I should have
exercised my right of choice a long time ago.
The level of care from my new practice is in stark contrast; it’s the
perfect balance of efficiency and effectiveness. Dr Lewis assures me every time we speak that
he is only at the end of the phone if I’m ever concerned or want to chat about
anything. If there was ever an NHS award
for compassion, I could not think of anyone more deserving.
I should have
also confided in my friends, I should have listened to my body, I should have
challenged my anxiety and I should never have taken a chance with something as
serious as Cancer.
I don’t quite
know the price of my mistakes, but I won’t be kicking myself too much… I’m
fallible! My initial reaction to this has
very much reflected my approach to personal adversity… I’m somewhat of a naïve
warrior. As with every other adversity in
my life, I’ll laugh inappropriately, take the opportunity to learn and use that to help
others. Being this open and honest
isn't entirely comfortably, but I'm hoping sharing these experiences might help others avoid my mistakes.