The Mistake…. good , bad and ugly

ravenMy throat pain was steadily increasing and the inability to move my tongue or articulate just led me to darker thoughts. The meeting in London with new ENT ( ear nose and throat specialist) and urgent scans confirmed it …..

Stage 4 Squamous Cell Carcinoma of the right tonsil with spread into base of the tongue. This indicated, that the node last year was not metastatic breast cancer, but part of a new tonsil cancer.

I could feel the anger welling up as I left the hospital crying. I called my mother. What a great woman… “You can beat it again” she mumbled through broken tears  over the thousand miles that separated us … I wanted so much for her to hold me as a mother holds her infant child. To tell me everything was going to be alright. The fear was suffocating.

Sitting in the car trying to digest the news, I just felt exhausted, so unlucky, I couldn’t even find the ignition for the key my hands were shaking so badly. My life has been a series of battles, almost like tests, and I just didn’t know if I could face yet another. I couldn’t stop trembling as I sat there trying to reason through all the recent events. My God !!! Cancer again …. chemotherapy and radiotherapy again!  How unlucky  can I possibly be ? What did I ever do to deserve this?

As I drove to my best friend’s house in search of consolation, I realised that life was exactly that… a series of ups and downs that you wade through to your best ability with courage and conviction. We discussed the immediate implications of the diagnosis, most of all the effect it would have on my son and how to tell him. How could the doctors have made this mistake. They had missed the obvious first sign of tonsil cancer: a single swollen cervicle node. Instead they had looked at my history of breast cancer and simply fobbed it off as metatastic spread. Even a pathology report from the lab clearly stated that there could be a new primary tumour but  both my breast consultant and the head neck team were in unison and adamant it was from the breast.

My head was a whirlwind of thoughts.. Why had no one investigated further ? Why had someone not stuck a bloody endoscope tube down my throat?  Even when the neck dissection came back showing only the ONE  cancerous node they did not move from their theory of  breast cancer spread. I have to say that the new consultants were all quite shocked that this had happened.  I have not seen the consultants that made the mistake since the new diagnosis..I am still far too emotional and full of resentment but it is something that I will need to face and challenge.

How did all this happen and whose fault is it?  I dont have the answer to this as there will always be an excuse to protect those responsible,  I mull over  the ‘mistake’ day and night.  To find some inner peace I  say to myself  that on the upside of what has happened,  I am now considered a 5 year breast cancer survivor; on the downside unfortunately, I have a new primary tumour and am embarking on another unknown journey.

Any man can make mistakes, but only an idiot persists in his error.  

( Cicero)

 

This entry was posted on September 12, 2013. 6 Comments

find a silver lining ….

silver-lining-frank-garciarubioLet me just provide a quick explanation. This new throat cancer episode all started back in March 2013 but I was too ill with the therapy to post on my blog. I am now recovering,  albeit very slowly , post chemo and radio and have decided to bring the blog up to date.

Contrary to popular belief, cancers of the throat and neck have a very good prognosis if they are caught early and treated. I had Stage 4 tonsil cancer with spread into the base of tongue (there is no stage 5). This was not great and I knew it. I was sick with fear… but for some reason I couldn’t get over the hurdle of just accepting the news.I was so angry, frightened and depressed: I wouldn’t allow myself to see the light or a way out.

I mulled over that it was the one cancer  I always thought I would be most susceptible to. I had indulged in my early life (as my good cousin puts) and wondered if, by some karmic force, if it was time to pay back. Is this really how the world works?…. it made me think about the belief systems of different religions. I was looking for something to hold on to …. something to help me make sense of what was happening yet again.

Yes, I had binge smoked and binge drank at the weekends for most of my life from the age of 17, but then who doesn’t? Nevertheless, statistically I was still on the young side for this type of cancer, which usually presents itself in the latter decades( 60’s 70’s). Oddly enough, I had given up both smoking and drinking just over a year before…. clearly not soon enough. I was feeling so good …. so content with my life and I now all I felt were useless sentiments, “ Why me ?” ….  ….. well………… ‘why anyone’ ……is the answer to that.

However, almost immediately, I found my ’silver lining’ . This beam of hope which helped me during the initial phases. If this was a new primary tumour …. then technically, I did not have metastatic breast cancer, as the node in my neck last year pertains to the tonsil/throat cancer. Therefore, one can reason that, I am a 5 years survivor of breast cancer. HOORAY!!!

Although this is great news, I should have known last year, so shame on the doctors for ignoring the clear signs of the new primary tumour. This is worthy of a separate blog entry as I can explain the series of events as they unfolded.

“If clouds are blocking the sun, there will always be a silver lining that reminds me to keep on trying.” 

Matthew Quick

This entry was posted on August 25, 2013. 7 Comments

Unfortunately back again ….

modern-artistsMarch 2013  – a year on from my last entry . I stood at the tram stop No 8 in Rome, a city, in which I had lived for 20 years of my life, to take me back down to Trastevere. I was numb and certainly shocked at the words I had just heard in Pronto Soccorso ( A&E)  of San Camillo: “ e quasi sicuramente cancro della tonsille”  simply translated into : its almost surely cancer of the tonsil/throat. They told me to return Monday morning for an urgent biopsy and to plan radiotherapy.

A few tears of panic slid down my face as I tried to decipher the events of the last hour. How can that be? I had been given an ‘all clear’  on 29th January .. The CT scan was negative; no sign of cancer anywhere in the body. Now it seemed, I was facing an advanced cancer of the right tonsil, extending into the base of my tongue.

I still didn’t want to believe it and kept telling myself, that it was the worst case scenario and holding onto a vain hope that it was a mistake. But in my heart, i knew as I made made my way home to my friends house for dinner.

That night the cancer permeated my every thought…. As I struggled to open my mouth and swallow anything during the family meal , I began to think and realise that the diagnosis could be right. In fact, deep down …… I knew it.

My friends kindly offered to look after me in Rome but after much deliberation, I decided I would fly back to London the following morning for futher investigations.

 

 

This entry was posted on August 23, 2013. 4 Comments

Five years down the line ….

mimosa-668x400x80xXIt is five years ago today that I was first given the news that I had cancer …International Women’s Day – Festa della Donna 8th March 2008  - I thought is was a trick of fate to be diagnosed on a day that we are supposed to be celebrating being women, holding our pocket sized branches of mimosa, giggling in some coffee bar but instead I was holding my niece Gina’a hand, trying to comprehend what was happening.

I never wrote my thoughts down the first time cancer came around because, in all honesty, I couldn’t face them… it was too painful and terrifying … the prospect of dying, knowing that your son may grow up alone ..he was only 15 at the time.

I can vividly remember the night before I went to get the results of the biopsy. The doctor had already called to schedule a longer appointment and just by that … I knew the news was bad. Meeting up with a friend that had already suffered the same fate, I proceeded to get extremely drunk … thinking that in some way it would numb the fear. But it didn’t … the next day as I sat in the chair and the words echoed… ‘cancer’ …my world fell apart.

and so the journey began.

I would like to be celebrating the 5 year mark …. saying that I have been free of cancer but I cant.I can celebrate however, what I have learnt about myself and how much I have grown as a person. I can celebrate that I woke up this morning , knelt at the bottom of my bed to thank the universe that I was still here. I can celebrate the transition of my son going to university; I can celebrate being a woman embracing love once again. I can celebrate so many things … or I could choose to be afraid, wallow in self pity, counting scars looking at my disfigured breast and cry.

Well I choose to live and celebrate LIFE and this is my message to all of you out there that are suffering or affected by this dreadful disease….. you can choose each day ,… choose your thoughts and stay true to them, banish negativity that disease feeds on and enjoy every waking moment with those that are close to you . Then you can say …. I am alive!

We are all faced with personal challenges on a daily basis: financial problems, work, family etc but it is only when you are contemplating your own mortality that you get a true perspective of your life. Life and death : two ends of a contiuum with a large void in the middle where it is written ‘live it’

You’ve gotta dance like there’s nobody watching,
Love like you’ll never be hurt,
Sing like there’s nobody listening,
And live like it’s heaven on earth.” 
― William W. Purkey
This entry was posted on March 8, 2013. 5 Comments

Scan Results

quran-miracles

This morning as usual, I awoke to the incessant groaning of a next door lodger’s freezer that is precariously perched against the adjoining walls. Taking a deep breath.. I tried to control the rising anxiety that was clearly about to invade my innermost thoughts. Opening my curtains, the sun flooded into the room giving me an uncanny sense of positivity on a rather cold, February day in London.

It was today. I knew that my life could change forever.

I decided that I wanted to look my best: music accompanied me into the shower and then sitting on the edge of my bed, I methodically applied my water proof mascara; either way tears of happiness or sadness were bound to result in black panda eyes and I wanted to be prepared. …. the faithful old mirror stared back at me ……and I thought to myself ….. looking good !!!

Downstairs in the kitchen,  I lovingly prepared my morning ritual of the Italian Moka coffee machine flaxseeds and yoghurt. And it was time to go ….Planning is of the essence here …. and we arrived just in time to sit for a few minutes before being called into the oncologists office. Previous visits have entailed waiting for long periods of time speculating on the cancers and life spans of the other waiting patients …. not good practice!

Miss Carrina Huff ‘….. my name echoed in the room. I stood up and walked apprehensively through the familiar hallway into the ever familiar small surgical room . I am not sure what I felt in that moment ….. a certain mental numbness …and then those words…..

“Scans look good ….. “ uttered with such calm that the surge of emotions that then overwhelmed my entire being were out of sync with the antiseptic surroundings. My friend’s eyes had welled with tears and we seemed to be looking at each other through misty panes of coloured glass.

You see… those three words meant that I had been given life again …. suddenly I was hearing the applause at my son’s university graduation ; crying as he waits for his gorgeous bride at an altar; holding my first grandchild; visiting those far flung destinations on a map and not as part of a bucket list; but most of all I felt free …there was no imminent sell-by date and no excuses to not find the courage to love again and allow someone to love me …

Cliches such as ‘words can not describe….’ seem to suddenly have a place in the English language …. sometimes words are simply not enough …. or maybe sometimes they are just not needed. I have come to realise, it is the journey that is important and what you learn and take with you …. not where you are on the road. This has been an incredible awakening for me and a steep learning curve but I have embraced each day as a gift..

I was having difficulty ending this entry then on my way home this evening,  I heard a song that inspired me and said it all ….. since my last diagnosis and the return of the cancer I learnt to fly without wings, gliding through each day… now I have wings and the sky is the limit …

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle 

Albert Einstein

This entry was posted on February 6, 2013. 6 Comments

Here and Now

Sri Lanka 2008 199Sometimes I feel so superficial: Here I am worrying about my hair that is progressively thinning …. and I think to myself … “Wake up girl” you know you have been through a cancer jounrey, done the chemo … lost it all before, so why do you care?”

Our minds play silly games and can allow fears to re-surface taking us to hypothetical scenarios that may not even happen.

However hair loss is just one of the side effects of the new medication I have been taking the last 6 months ( Letrozole) but seems to have really kicked in the last couple of months; accompanied by incredible fatigue and joint pain which contribute to terrible mood swings. Managed to also tear my meniscus ( cartilage in knee) so hobbling around with thinning hair trying to avoid my reflection in the multitude of mirrors hanging silently on the walls. Maybe it is just the worrying going off on a tangent whilst waiting for these all telling `CT scan results. To soothe my anxiety, I then type away on a brand new Mac Air …. but still feel incredibly sorry for myself.

This just wont do…..

Recently I heard someone say “Be true to thine self” Reflecting on these words I realise that perhaps the spiritual journey I had started when rediagnosed with metastatic breast cancer in May, somehow slowly faded with the long summer days .

So now I need to reground myself… I have lost my way a little during the last few months and I am aware of a changing thought process. Old trains of thought squeezing their way through the walls of optimism that I had managed to construct. Time on your hands can play games with your mind as you ponder and fabricate the future. Really the only moment of any importance is NOW.

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment wisely and earnestly. ~Buddha



This entry was posted on February 1, 2013. 4 Comments

Dreams…….

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New scans are impending and an update on my situation is inevitable… as much as I would like to bury my head in the sand in the so called ‘ostrich effect ‘ .. I do need to know the outcome of the last surgery: Did they manage to get all the cancer in one swoop? Are there cancer cells still showing life? And the big frightening one… has it spread anywhere else?  Anyone reading this would say ‘Stop being so negative…. think positive’. My reply would be that I am ….as much as is humanely possible under the circumstances.

 I have reached the point, after these last few difficult months of not thinking about the cancer every waking moment: of being able to lead a ‘normal’ life : of being able to fall  asleep not thinking about a spiral of decline and untimely death; Spending time with people I love and laughing from the heart without that all invasive sadness lurking in the shadows; Thinking more about the feelings of others and being less self- obsessed …. relishing every moment because life is beautiful even though extremely fragile and uncertain. I am finally a ‘me’ that can exist ….accepting all my faults and imperfections.

Many years spent searching for a meaning to everything simply resulted in self-induced restlessness and discontent. Something inside me has changed profoundly since the last diagnosis of cancer and with it the realisation  that ‘happiness’ is a state of being and one of choice

 It is odd and uncanny to think that one can be at peace when facing serious illnesses, grief or difficult times but for me, the true values in life became immediately apparent: A sense of mortality rears its head and the future somehow fades from reach but what is beautiful is that the present becomes incredibly more powerful and relevant . I thought that the cancer had taken away from me the possibility to dream…. dream about a future time and space. I always had a dream…. it was never about anything materialistic or tangible but a dream of being serene and finding internal tranquillity in a corner of the earth .  A dream of being loved unconditionally and openly…. for who I am and for my values which I hold close to my heart and for which I have fought for all my life.

 A moment of reflection makes me realise that my dreams are actually happening now as I allow myself to surrender to life and let the universe guide me. If I open myself to the world, take a risk and attempt to shut out the ever present fear anything is possible… including keeping cancer at bay. I am on a wonderful journey of discovery and of course….the all important road to recovery.

Thank you all for being a part

The future belongs to those who believe in the beauty of their dreams

Eleanor Roosevelt

This entry was posted on November 28, 2012. 5 Comments