Laugh and learn!

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 21^st 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 22^nd 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.