The silence of cancer

Cancer silences and isolates,  this is why I have so much to say.

I am fortunate to have a wonderful support network of family and friends who all take their time to make sure that we are loved and supported.  I have people to laugh, cry and just be with.  Yet, cancer can silence.  At times, cancer is all-consuming, it affects every waking moment whether we like it or not, but I don’t really want to talk about it with friends and family.

In fact, when I am with family or friends it is the last thing I want to talk about.  Instead, I want to talk about life.  Life is wonderful, people are wonderful and that’s want I want to talk about.  I want to hear about everyone’s lives, their jobs, their school, their friends, their ups and their downs.  I want to laugh, joke and smile at the absurdity of life and everyday dilemmas.  It’s difficult though, as all I have churning in my head is blood counts, medication, the next treatment schedule and whilst I try really hard to engage in conversations I often feel myself fading into the bubble of cancer.

It is getting easier though because of writing.  I clearly need to talk about it but the conventional form is not for me at the moment.  Talking about it in a normal sense, would mean having to consider my feelings and emotions randomly.  There is no real way to predict which emotions may come to play during a conversation about my child’s cancer, this is the danger of conventional conversation.  It leaves me quite vulnerable and exposed  to feel something that I had no idea was coming.  When my nerves are already quite frayed and tensions abnormally high this is a calamity waiting to happen.

With writing it is different.  I can dictate where I go and what to explore at my own pace. The feelings and emotions that arise are almost predictable as I am in complete control of the conversational journey.  Every piece I write touches on a new raw emotion but it is for me to take it at the speed I want to.  I can tickle the subject matter to get a little taste of how I feel or delve right in; it is truly liberating.

It is like each piece I write, releases a tiny bit more space in my mind for life rather than cancer.  To realise this has been a relief.  The writing has clearly become an important aspect of accepting where we are, what has happened to this point and where we are going.  It means that I am at the stage where I am able to contemplate more than the diagnostics of cancer but also our life.  My mind is aching for a bigger picture beyond leukaemia.

The silence of cancer is slowly ebbing away.

 

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Justine Greening hear this…

As two teachers with three children in the education system, we live and breathe education.

At the moment, it could be argued that the true essence of the love of learning and the purpose of education has been lost in government policy.  We constantly hear from the government how standards in this country are not good enough.  The children are not making enough progress, the schools are not good enough, teachers are failing.  How do we know this?  These statements are based on national tests which are objective and universal and of course OFSTED.  There is little recognition or publicity of teachers and schools attempting to inspire a love of learning or encouraging the development of the whole child and family.  A child that becomes a caring, compassionate and moral adult.  A family that heralds the hard work of the teachers and the school.  A feeling that education is far more than statistics and judgments; it is what helps makes people live and respond the most credulous ways.

We have both been teaching for nearly 20 years so there are a lot of ex-students out there in the world who are now fully fledged adults enjoying successful lives.  As teachers, we know that we play an important and positive role in children’s lives and the rewards are immense.  Sometimes we do forget this when we are bogged down in the politics of the job but we are proud of being teachers and our profession.  The classroom can be an exciting place and we have had those “Dead Poet’s Society” moments where we know we have just experienced a eureka moment in the classroom or something we have taught has had a profound effect on a child.  Despite this, I always thought that, for students, our role in their lives was time specific.  They grow up, they move on, they forget their time at school.  At the end of the day we are just Mr and Mrs Brown.

Since Felix’s diagnosis, we have been overwhelmed with best wishes and kindness from many of our ex-students.  Students that we have taught over the last 20 years.  The compassion, love and kindness we have received from them has been phenomenal.  Within days of diagnosis, a young man I taught many years ago had contacted me and offered his love and support.  He is also receiving treatment for leukaemia but instantly offered support for Felix and was one of the many who reached out to AFC Bournemouth to help.  An ex-student of Mr Brown’s has been instrumental in keeping Felix busy with copious amounts of Lego she has managed to source from colleagues and friends.  An ex-student turned up at our door after a long day at work with a gift for Felix; he’s never met Felix but went out of way to do something for him.  Currently, a student is training hard and preparing to face the 3 peaks challenge for us.  The time and effort many students and ex-students have afforded us is humbling.

The amount of compassion and support we have received from students and ex-students is awe-inspiring.  From cards with heartfelt messages to the AFC Bournemouth Match Attax team, children and adults have taken their time to show they care.  To me, this is why all those involved in education, students, parents and teachers, should be praised and celebrated.  Our youngsters do have a high quality of education.  It is one that somehow, amongst the new initiatives, testing and tick-boxing, also instills a sense of morality, compassion and community.  Our children do make progress, at different times in different ways which are not measured; the schools are doing what they should be doing despite lack of funding and teachers do live and breathe education to make sure the children have the well-rounded education they deserve.  I am honoured to teach the students we do and those from the past. They make me proud.  Thank you.

Justine Greening hear this…

And so we did what we do best; We loved, we laughed and we smiled.

That first week on Piam Brown was a blur of sterility, procedures and pain.

During those first few days, Felix endured countless interactions with strangers, procedures that hurt so much that he cried in pain and a tirade of emotions that he could not recognise, let alone explain.  Until this moment he had never really experienced true physical pain or fear or lack of control or a complete sense of being overwhelmed and scared.  We hadn’t.  For the first time in my life, I can categorically say that I felt what fear and panic were in their truest form.  Felix had never experienced these feelings before so he couldn’t tell us how he felt.  His lack of comprehension and words meant that he just became quiet and sad.  The nurses, doctors and housekeeping staff were amazing and did all they could to keep him upbeat but Felix didn’t know them; he didn’t have a relationship with them and didn’t trust them.  We all did all that we could to reassure him and tell him that everything would be OK but every time we did, another examination or procedure would take place which upset him.  We had no idea what was happening or what would be happening next so it was difficult to prepare him.  It was heartbreaking.  The hardest thing for us, was to watch Felix go through something that was really tough and not be able to fix it for him.

During that first week he had numerous examinations including a lumbar puncture, x-rays, ultrasounds.  It was all so scary.  Felix was anaesthetised on two occasions for his lumbar puncture and then to have general surgery to have his portacath fitted. He had his first lot of IV chemotherapy, his first lot of steroids, his first lot of anti-sickness.  He had four hourly observations, he had to pee in a pot every time and now he had a titanium port fitted in his chest.  All of this in three days.  The week before he had been at school camp taking part in hikes and outdoor activities.  The week before he had trained with his football team.  It was surreal.

The rapid response to his diagnosis is a medical marvel in our eyes.  Whilst it gave us no time at all to psychologically prepare him, or the rest of Team Brown, for what was happening and the future that lay ahead, the medical care and attention he received from day 1 was phenomenal.  Would it had been different had we had more notice or time, I’m not sure.  Would it have stopped the endless tears during those first few days?  Probably not.  Would fear and anxiety run through every vein in our body?  Without a doubt.  Would the nurse had to have brought me a cup of tea and words of compassion at 3 o’clock in the morning?  I think she would.

During this time we still had to laugh and smile.  This was our son we were fighting for.  If we lost our humour, confidence and conviction, Felix would lose his.  We had to override these feelings of helplessness, fear and anxiety.  We had to take emotional control of the situation for the sake of all of us.  We only had one option.  We had to be us.  And so we did what we do best; We loved, we laughed and we smiled.

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Piam Brown ward – Wednesday 3rd February 2016

The power of football

Football gets bad press.

And why shouldn’t it?  There have been scandals galore, both on and off the pitch.  From the players to the governing body there have been allegations of drug abuse, fraud, child sexual exploitation, match-fixing and so on.  Football provides the media with endless headlines to sell their papers which often provoke negative emotions and responses.  There is also the constant reference to players salaries.  They are repeatedly judged for their financial payments against their moral worth.  There is very little reference to what they have to do, and what their families have to commit to in order to receive these salaries.

When Felix was diagnosed, people knew his passion for football, so family and friends desperately reached out to the football community for help.  They were welcomed with open-arms and the football community responded in a way that money could not buy.

At a local level, his team the U10s Poppies came straight to his aid.  They showered Felix and the whole of Team Brown with kindness and compassion.  The manager dedicated a beautiful piece about him on their website and looked forward to the time when the Poppies No 7 would return home.  A local charity match for the U10s Dads was promptly arranged raising nearly £1000 for Cancer Research.  Such is the spirit of grass-roots football.

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Southampton Football team regularly visits Piam Brown ward at Southampton Hospital.  Hours can feel like weeks in hospital and so any distraction from the four hourly obs or continuous hydration can feel like a holiday.  The team bring with them an energy and optimism which is so needed by the children.  They flood the ward with goodies, smiles and humour whilst the children clutch hold of the signatures and parents ensure that photos capture the happy experience.  The pivotal feeling for Felix, having met the Southampton team is that they made him feel special and valued; crucial at this difficult and tough time.

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The strength, love and kindness that has poured out from AFC Bournemouth is phenomenal.  Behind the scenes, friends and family made sure that Eddie Howe knew the pickle that Felix was in and within a month of diagnosis he had been touch.  The premiership manager gave Felix over an hour of his precious time to visit him at home and drink a cup of tea with him. A gesture that Felix could not believe, and still can’t believe to this day.   Why would someone as talented and respected as Eddie come to his house to see him?  A gesture that made him realise just how remarkable he was being.  Then there are the players, the support staff and the team at the stadium.  They have all welcomed Felix at the club, gifted him personal possessions, donated to his fundraising and taken the time to talk to him.  Then there are the fans.  The fans who have done everything they can to make sure that Felix stays positive and has the strength to face the challenges ahead of him.  They constantly offer him comfort, motivation and humour on his blog and do all they can to make sure he goes to as many matches as he can.  Fans have offered tickets and even given up the chance of VIP tickets for Team Brown to use.  Everyone at Dean Court takes the time to let Felix know they are thinking of him and rooting for him – Felix loves it and it does him the world of good.

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And then there are the individuals.  It soon transpired that Felix’s all time hero, Yann Kermorgant also had leukaemia as a teenager and then went on to become a successful premiership footballer.  Family, friends and Reading Football club pulled out all of the stops to give Felix the opportunity to speak to, and then go on to meet his hero.  Yann has been instrumental in helping Felix stay positive and be strong; Yann is the only one who really has any idea what he is going through and is able to support Felix in a truly unique way.  We are eternally grateful to Yann and his family for their support.

The football community at all levels have gone out of their way to make Felix feel important and special. This is what we rarely see in the press.  Teams, players, managers,  and fans have all gone out of their way to help Felix through this difficult time; this is more than any medicine or therapy could do.  We thank you.  This is the power of football.

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Children are wonderful; all children are wonderful; all children are unique.

All children, at some time in their development will fall out of kilter with their peers.  Whether it is when they start to walk, talk, read or write or maybe when they begin to grasp the subtlety of social communication and interaction, children develop at different rates.  Children are normalised by society on a percentile for physical growth, reasoning or social communication and this may that mean they are able to function well in all aspects of life; in both the social and academic arenas.  For some children however, because of their uniqueness, life can be tough.

For Felix, his diagnosis means that both socially and academically his development will be hindered.  The change in his appearance,  his risk to infection, the effects of the chemotherapy, long periods in hospital and isolation from peers will all, in some way affect him.  It has had an impact on his confidence, it does affect his attendance at school and his ability to engage in social activities.  However, whilst there may be long-term effects, where we are at the moment is temporary.  His appearance will return to as it was, his resistance to infection will improve, chemotherapy will reduce and one day cease and he will return to school full-time.

For some children, their battles are not temporary; they are permanent and life long.  They also deserve compassion, support and love.  The uniqueness of children means that for some, their battle is invisible and so is that of their family.  A physical or sensory disability may mean that a family may have to constantly fight for their child’s access to education, their child’s right to suitable accommodation or the ability to go shopping and socialise with their peers.  How do we know if a child has social, emotional or mental health needs?  In the background, their parents/carers may be fighting for appropriate medical support or specialist provision to support the child’s learning and progress.  For children with communication difficulties or a dyslexia or dyscalculia diagnosis, school and the world around them can be confusing,  intimidating and daunting.  Parents/carers and families may be constantly fighting for equality and fairness for their children.  But most of these children do engage in both the social and acadamic arenas and do so succesfully.  The children and their families develop amazing coping skills and resilience to continue to fight and battle for what their children deserve.

They are the apple of our eyes.

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The awkwardness of cancer -Part 1 language

So, cancer came to spend some time with us.  There are many awkward things about cancer.  The language, its appearance, its deadly nature.  Cancer, that thing, that word invokes such emotion, fear and terror.  Should we welcome it with open arms, talk openly and honestly and expose our children to the harsh reality that is cancer?  Or should we censor the content and language of cancer and give our children half-truths to protect them?

We decided that we could not live in fear of Felix’s cancer.  We needed a positive relationship with this thing – it was going to be with us for three years and the long-term effects for ever.  It was up to us to dispel the sheer terror that often ran hand in hand with the word cancer for the sake of our children.  We felt that the way to do this was to be honest and open with them and not to be scared of the language that we would use.  This was no place for half-truths; in our experience, half-truths ultimately led to hurt and a sense of betrayal. There were going to be tough times ahead and we needed the children to feel safe and secure; we needed them to trust us.

And so we used the word cancer openly and explained the language of cancer: portacath, lumbar puncture, blood counts, chemotherapy.  We didn’t give cancer and it’s language exclusivity to rule our world but we when we spoke there was honesty in our explanations and truth in our responses.  This language is now part of our everyday lives.  Felix will say that he has cancer although he prefers its full name, acute lymphoblastic leukaemia, as it includes ‘blast’ which for a 10-year-old boy is epic.  His little brother talks about chemotherapy as a medicine, which it is, and his older sister is keen to examine blood counts and discuss cell types and their current dysfunction.

There is no definitive way to cope and manage childhood cancer in the home but the language which is used can be important to the family.  We want to take away the fear and trepidation when talking about cancer.  We want to be able to talk freely about something which is now part of our lives and will be forever.  We want people to talk to us, without feeling awkward, about the cancer that has invaded our lives.

Understanding cancer terminology

Why am I at the tip? My son has cancer…

This is the dichotomy I find myself in.

I had ruthlessly cleared the shed of tins of paint, broken but hoarded gardening equipment and a variety of plastic garden toys and made my way to the local tip.  It was a bright and sunny Sunday morning, the tip was teaming with enthusiasm and a sense of purpose.  I proudly joined my fellow tippers and launched the bags over the wall with a sense of virtue and success.  We nodded at each other and rolled our eyes as less experienced tippers attempted to dispose of their goods in the wrong area.  Then it dawned on me.  What on earth was I doing here, involved in this senseless, mundane activity, when my son had cancer?  I had this sudden panic that I should be at home with him, enjoying him, loving him, laughing with him when instead I was here, surrounded by strangers amongst tons of rubbish.

Whilst the booklets and pamphlets had explained the ins and outs of life with leukaemia, there wasn’t advice about this.  How do we combine a sense of normality with the enormity of having a child diagnosed with cancer?

The ‘tip’ incident did rattle me.  I began to question whether we should be doing things differently.  Should we be making the most of every minute, making life ‘spectacular’, cherishing every moment?  Should we be aiming for a life which is ‘picture perfect’ and ignoring the every day necessities?  During the short drive home I had determined that no, life had to go on including the banal as well as the spectacular.  We had to look at the bigger picture; the stability and happiness of the whole family.  This meant trying our very hardest to raise our children to be polite, kind, hard-working and happy and to live a meaningful life.  We had to continue with ‘normal’ life even if that meant doing a tip run and all the other day-to-day stuff.

So, as we carry on with ‘normal’ life and I am raising my voice and getting agitated with the travel insurance company, I smile at Felix.  This is not a magical, memory making moment but it is life and a life that Felix is living and enjoying for all of its high and lows.  During the phone conversation, he is learning that he has the right to complain if he is not happy with something and that there is no need to shout but to listen and assert himself calmly.  He is also learning that people cry when they are angry as well as sad!

Felix does have a cancer diagnosis but he is still our beautiful 10-year-old boy.  A boy who we still have the responsibility to raise to have a broad and balanced view of the world.  A boy who understands that with the amazing things in life there are the mundane and relentless; without the mundane and relentless, we couldn’t have the spectacular and amazing.

The next time I go to the tip, I will take him with me!

 

 

 

Team Brown suddenly became more important, and meaningful, than ever before.

The weekend came and went without incident.  As instructed, further bloods were taken on Saturday morning, Felix took his tablets and his temperature was observed twice a day, with the understanding that if it went above 38 degrees we would bring him straight back to hospital.  As expected, Felix  was taking it all in his stride and bellowed with pride as he perfectly complied with everything that was asked of him.  Little did we know how hard and tough it was all going to get over the coming days and weeks.

On Monday 1st February, we arrived with Felix at the Piam Brown ward in Southampton Hospital at 2pm as pre-arranged.  The rest of Team Brown had been left in the capable hands of my parents so that we could fully focus on this new world we were entering. Looking around the ward we felt like we shouldn’t really be there.  The beeping machines, drip stands, signs warning of infection.  We looked at Felix; he was a figure of fitness and health.  It just did not make sense.

Anyway, we were welcomed, settled in and made to feel at home.  Many conversations took place on that first day about what was going to happen, when, where and how. Basically, we understood that Felix would have a lumbar puncture the next day and a bone marrow aspirate to ascertain for sure the type of leukaemia he had and to get a genetic footprint.  He needed to have a line surgically inserted the following Thursday, either a Hickman line or Portacath, it was up to us to choose.  Until then we would also have to decide whether or not Felix would take part in the UKALL 2011 trial.   As I type these words now, I type them with ease as they are part of our Brave New World and I know and understand them.  At that time it was like a foreign language.  How we made those decisions I do not know.  We must have been guided by intuition as our ability to reason was obliterated with emotion and fear.

That first night Mr Brown slept in the ward on a pull down bed with Felix and I returned home to huddle, support and love the rest of Team Brown.  This was the first night of many that we would spend apart.  Team Brown suddenly became more important, and meaningful, than ever before.

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Everyone has a back story, this is now one of ours.

We spent the weekend with family and friends in an atmosphere of nervous trepidation. Visitors came, visitors left.  It felt a little bit like Christmas.  We speculated and anticipated about what was to become.  We had no idea.

What we did know was that we had to shop.  We were embarking on a new relationship with cancer and periods in and out of hospital so it was time to plan and organise.  This is what I do best and it was something that I could do, so we went shopping.  Whilst it may seem insensitive, it was a little like holiday shopping; new toothbrushes, toiletries, new wash bags, new PJs, magazines, boiled sweets (?), snacks, lip balm (?) and mouthwash.  It was a huge shop.  At some point during the shop I realised that I’d forgotten something so asked my daughter to remind me later to go back for it.  When I asked her what she had to remind me, she replied, “everything is nice and normal”.  Already, within 24 hours,  it had all changed.

As we wandered around the store,  I was acutely aware that nobody knew why we were shopping or why we were buying new pyjamas.  I wanted to tell people.  I wanted them to know and realise that I, and others in the store, had a ‘backstory’.  None of us knew, why any of us were there.  That is when I realised there is an underlying assumption that people were doing their weekly shop or just popping in for the odd essential.  That day I realised that everyone has a backstory.  People were all in that store, that Saturday afternoon, for different reasons.  We were in there because our son had been diagnosed with leukaemia 48 hours previously.  Someone else might have been in there because they had been diagnosed with cancer 48 hours before, or they had just lost a loved one, or they were celebrating, or they were lonely, or they were about to lose their job, or they were just simply bored.  Everyone had a reason for being in that store on that Saturday afternoon.

Everyone has a back story, this is now one of ours.  One of which we are sharing with you now but will soon become part of our history.

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Contemplating The Diary of Mr Felix Brown

Those first few weeks launched us into an unknown world of professionals, procedures and emotions.  The learning curve was huge as we tried to comprehend the enormity of what was happening to us.  Amongst it all we wanted to make sure that our wonderful family and friends were kept up to date and as informed as possible.  And so The Diary of Felix Brown was born.

The aim of the blog was to stop people worrying.  Felix hates people worrying and fussing,  so the idea was that if the diary was kept updated, people would know where we were at and feel involved in a way.  Felix was already getting fed up with people talking about it all of the time.

As the weeks went by, friends of friends started to follow and people were keen to share his story and encourage international followers.  The page also attracted interest from the local paper who asked to do a feature on his page.  Felix had never been in a newspaper before so he was really keen to find out what it was all about.  We thought it would just be a small article, a page filler.  To us, what was happening and how Felix was coping was  normal; it didn’t seem out of the ordinary to us.

The next day we were amazed to find that Felix was in fact front page with a double-page spread inside.  It was a lovely article which emphasised his humour, cheekiness and down to earth nature – we were so proud.  The media interest that followed over the next couple of days took us completely by surprise.  We were inundated with interview requests from the national press, radio and TV shows such as the Ellen Degeneres show with offers of money as an incentive.  It was all too much.  It was just meant to be a fun afternoon for Felix and we did not want to profit from what he was enduring, so we politely declined any further interviews.

However, that little toe-dip into the media world saw the likes on the diary rocket beyond belief.  What was meant to be a vehicle for keeping family and friends updated was quickly becoming a source of inspiration for others, an avenue to raise awareness and an opportunity to raise money for charity.  A month later, whilst Felix was again on a break from treatment, we agreed to him being interviewed by Channel 5.  Again, the reasoning behind it was purely to give him something to do and experience something which he would not ordinarily have the opportunity to do.  And boy he loved it.  He loved getting ‘miked’ up and doing a spot of acting for the camera.  It also resulted in more donations on his Justgiving site which was an admirable outcome.  Again, we did not receive any money from the interview.

Whilst there are huge positives resulting from the success of his diary, we are constantly monitoring the impact of it on him.  He is at the end of the day a 10 year old boy undergoing treatment which is both emotionally and physically gruelling.  We regularly weigh up the positives that he is gains from it and consider whether or not it is still a morally good thing to do.  With this in mind, we consider the wonderful encouragement from people he receives when times are tough, the gifts and experiences which have generously been offered, the awareness that has been raised, the many donations to charity and how he also helps others cope with their day-to-day life.

We also weigh up the benefits of it for the whole of Team Brown.  As I write this, a package has been delivered, organised by someone who has been inspired by his page.  This package has made Felix smile more than I could this morning.  As part of the package, he has been gifted vouchers to take his family to a well – known restaurant, a place where all three of the children love to go.  He doesn’t have much control over anything at the moment, but this, for a moment, will fill him with pride to be able to take us there, the kids will love going and myself and Mr Brown will relish doing something normal.  We all benefit and take something from the diary, whether it’s the kind words, uplifting messages, thoughtful gestures and or humour shared on his page, our current situation is, without doubt, made better by it.

So, at this moment at this time, whilst we contemplate the ethics of The Diary of Mr Felix Brown, to us it is nothing but good.

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