Stop Trying to Organise People!!! ~ A Guest Blog by Sarah Burbidge

We were asleep and Wayne answered his phone with a “mate are you OK!” I shot up pillows stacked and waited for him to return. I think we tried to discuss it, a far too early wake up loomed, so we pretended to go to sleep. Either that night or a few days later (as can’t remember how much we knew) I did what you should never do with illness and headed over to Google. Even though I spelled it “acute lymblostick” it came up with a headline from the NHS website which read: “Acute lymphoblastic leukaemia is a type of cancer that affects the white blood cells. It progresses rapidly and aggressively and requires immediate treatment.” The search didn’t give me suggestions, which worried me (I work in web search stuff) as I thought this must be quiet rare.

Felix is Wayne’s godson who he admires deeply, I am mindful that I have to be cautious about saying what I read on Google, so I would have said something like “I think this is really bad”. I talked about what we could do to support and said about offering Wayne’s services (as he’s a great cook) to take them dinners. Wayne was a bit offish and said: “if they want help they will ask”. He’s been best mates with Dylan since school and his friendship with The Browns is strong. His call is to “let them digest it and they know where we are if they need us”. I have a habit of wanting to organise people and came to realise that this was not the best time.

We popped round after chemo had begun and I recall Kerry saying to Wayne after Felix left the room, “he’s different isn’t he?” “can you see a change?”. Not many words were said and more of a look but the basic answer was “yes”. Kerry did an agreeing nod with a loose bottom lip as if she was looking for some clarity that some big changes were happening, but didn’t quite want to hear it. We wanted to do something extra but didn’t know what!! Wayne went all guns blazing setting up a big charity challenge. I most probably went to Pinterest to look for inspiring quotes, but there was no way a quote would help here. I am powerless in my knowledge, I can’t comprehend the emotion The Browns are feeling.

In summary, I have no words!

We went to a children’s cancer charity event to “Light up Bournemouth Pier Gold” organised by a mum who very sadly lost her child ‘Isabel Baker’ to Leukaemia the previous year, just days after Isabel’s first birthday. Following her death, the mum (Vicky Turner) set up a charity the ‘Isabel Baker Foundation’ which supports bereaved parents.

The organisers invited us to buy a tea light or two and stand on the beach, we were meant to be in shape of a ribbon, standing against the rope. People were huddled together and my inner voice was saying “oh I could organise this better” – actually I have a habit of letting my inner voice out (which I did) and Wayne said, “stop trying to organise people”. I went silent as it hit me harder than ‘Miley Cyrus on a wrecking ball’ what was actually happening here. I started to actually consider and comprehend what a lot of the people who were there on Bournemouth beach that evening were going through. Holy crap, major reality check!!! They don’t care about organising themselves into a perfect ribbon shape this is about being together and standing united with the families who have lost their children to cancer and those who are currently battling the disease. It’s about raising awareness that this is common and it is likely to impact a family you know. Oh my god I feel like a total un-compassionate cow that I had mentioned about rope organisation! I keep my inner voice in. My thoughts and tears on the beach now say: “I am here and I will be silent and the families I stand beside, I hope that me being here gives you strength and courage to continue to fight. I support you “.

Woah that was emotional writing that!!

So very grateful that Felix and Kerry started to blog as it helps me understand more about the physical and emotional challenges that the whole family have faced are facing. I feel that I can give much more support with social media than I could face to face, a like and a thumbs up emoji is my way of letting you and others know that I support you. I especially love the blogs about ‘where you were and what you have become’. Your all pretty awesome really, who knew!! Oh wait Wayne did! Love you all, Team Brown Forever x x x x x x

Sarah

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It Takes A Man to Feel ~ A Guest Blog by Mr Driscoll

Mr Driscoll here, I’m very a private person whom does not like sharing my feelings or thoughts in such a public way because as men it is drilled into us that we have to do everything in our power to be stronger and to keep away from anything that may put ourselves in a vulnerable situation but having your child diagnosed with a serious illness changes that.

My dad lost his dad to cancer when he was about Isaiah’s age. Throughout his dad’s illness he was always told to “man up”  and “men don’t cry” so of course he too drilled this into me when I told him about Isaiah’s diagnosis he told me I had to “man up for his sake”.  What does “man up” even mean? Us men are treated at times as a whole connected species who all act the same but that is the furthest from the truth. So how can we “man up” when we are all different? Whom do we compare us to?

I remember when my son was diagnosed it felt like I had the wind knocked out of me something I have not felt since I lost my first son 3 years ago. I remember feeling like I had to “man up” and be strong so I asked questions when my wife was unable to form sentences, I booked upcoming appointments and cradled my wife while she cried, I did all the things “men are expected to do”.

Isaiah has spent a few days in hospital recently due to a case of pneumonia. He’s home now and improving but there was a time where we thought his cancer had spread to his lung so while waiting for his PET scan results I looked at my obviously scared son and said something I regret daily.  “You gotta be strong like a man” he looked at me blankly, nodded and formed his best fake smile.   At the time I didn’t know it was fake I was just teaching my son the expectations of a man – I didn’t know how much damage it could do…

It was Monday night that the toll of seeing my son in such physical and mental pain the past week clearly became too much and I cracked.  I went to the outhouse… I  cried, I shouted, I chucked and broke things, I cursed at God and punched walls. My wife found me crumpled on the floor I felt sick to my stomach as she was seeing me at my most vulnerable.  I was not a man, I was a sorry excuse for one. I refused to look at her, she was silent while she cleaned my tears and inspected my scraped knuckles she then grabbed my face to make me look at her and said: “You don’t need to man up, men cry, men are allowed to feel weak it’s okay”.  Nothing else was said because that’s all I needed to hear.

As I laid in bed that night it dawned on me how much those words  “man up” had affected mine and my dad’s mental health.  How it had almost destroyed us on many occasions so I made the choice then that I did not want the same for my son.  I wanted to break the cycle.  So that morning I went to my son hugged him for the longest time and actually cried in front of him while spewing mutterings of sorries.  He was so shocked and said, “Dad men don’t cry?”.  I turned and said “Yes they do and it’s okay.  I don’t ever want you to man up if you want to cry you cry, if you feel scared be scared we can cry and be scared together”.  I knew that what I said that day had meant more to him than any “I love you”.

Childhood cancer is something I don’t wish upon anyone but it has taught me so much.  It has let me embrace my vulnerability which has made me become a better father to my son at a time where he needs me the most. So for that Epithelioid sarcoma, thank you.

For any other dad  going through this just remember it’s okay to feel, you don’t need to man up..not now not ever!!

Thank you for reading

Mr Driscoll🎗

It Takes a Man to Feel

Words and Feelings by Auntie Jodie ~ A Guest Blog by Jodie Bright

It was a normal day in our household, it was around 6pm and the phone rang.  To be honest, I was pretty annoyed as anyone with young children would know this is the ‘play me up hour’ with the screams of tiredness, wanting to put on their nightclothes but not physically having the strength to get them! The witching hour. My husband answered the phone and passed it on. It was my sister Zoe, I could tell her voice wasn’t right, she quickly asked how I was then continued with the words ‘they think Felix has leukaemia’ followed by, ‘don’t ring Mum and Dad as they are just taking it in’.

I was numb, then a bit, who said? Why? How’s Kerry? Where is Kerry? Where is Fe? Are they ok? Tears starting to stream down my face, a million questions going round in my head, but I couldn’t get the words out to ask them. I hung up the phone, gathering myself, holding it in as I didn’t want my children seeing me upset, I didn’t want to talk about it as talking made it seem real. With the children in bed, I broke down.  Searching the internet trying to get some understanding of what the next few years would entail. Messaging family, as talking on the phone, was too painful. The next few days passed in a blur. Kerry just wanted humour, she didn’t want sadness, so this is how we all coped in the first few months.  Always looking on the bright side, no dwelling on why Fe, but more let’s beat this together. I sat the children down to explain that Felix was poorly and that he might look different when they see him. That he may lose his hair but it didn’t phase them at all.  We could learn so much from children.  When Fe lost his hair, or his face was bloated from the steroids, my children didn’t react any differently to him. They carried on as they did before his diagnosis. When Fe’s legs were weak and he couldn’t kick the football, they didn’t ask why?

Hearing the traumatic treatments Fe had been having I felt weak. Weak that there was nothing physical I could help with.  Living 2 hours away it’s not like I could pop in to see them all. I felt helpless. Just waiting on messenger for the next update, anxiously waiting to see if Fe’s bloods were good, hoping the chemo was working.

During this time my daughters best friend died suddenly at the tender age of 5.  This was my realisation that children can die which sent shockwaves through my body like something I have never felt before. This is when I decided maybe some pen pals might help.  The kids would send pictures and gifts to Felix and to his sister and brother but this still wasn’t enough so I started to research about famous people who have overcome leukaemia. Someone who Fe would look up to that would give him the inspiration to beat this.

This is when I started to email Yann Kermorgant’s agent, he had leukaemia when he was younger and he had played for Fe’s favourite team Bournemouth.  I talked about Felix and his passion for football, and before I knew it they were in contact with Fe and arranged for Fe to meet him at Reading Football Club. Over the past 18 months, Yann has been a rock to Felix and The Brown Family.  They will all be friends for life, and to be honest, Yann is probably the only person who Fe can relate to regarding the treatment he is undertaking at the moment. He has been a tower of strength to them all and a truly inspirational person.

I am so proud of how Team Brown has dealt with this situation, it has opened my eyes into a world that was unknown to me before.  Kerry has lots of doctors knowledge now too and the children all seem older than their years.  There is still a road of treatment ahead of them, but we will head down it together. Through laughter, humour and the ability to not let this cancer win. I am proud to say I am Felix’s Auntie, the non-selfish manner he has approached his cancer, also helping other youngsters deal with their diagnosis and how he always makes my girls and me smile, makes him an unbelievable young man. 

Finding a son and a brother … the lost babies of the 1960s and 70s

This is a repost to celebrate my brother’s birthday today.  I know it is not #CCAM related but is part of our family’s history.  When I posted this last year, it touched two families who have gone on to find where their babies were resting, having lost them decades before.  I hope this post reaches out to touch more families who are waiting.

Happy birthday Darren.  We found you just before Felix was diagnosed.  We will all visit you one day soon – you are never far from our thoughts xxx

Back in the 1970s, when a baby was born ‘sleeping’ or died shortly after birth, their existence was far from recognised let alone celebrated.  There was no dignity in death for these young souls.  I have grown up knowing that I had an older brother who died a few weeks after he was born.  I have also grown up knowing that my Mum and dad had no idea what happened to him after he died.  All they had was a birth certificate and death certificate.  They didn’t have any photos of him, no chance to take handprints or footprints, there was no funeral, there was no memorial.

Mum would often talk about ‘her little boy’ particularly around his birthday in September, but quite often out of the blue.   He was born in 1971, after a long and difficult labour, with spina bifida and encephalitis.  Mum and Dad had no idea.  Back then there was no screening available and very little monitoring in comparison to the care received today.  Immediately after delivery, Darren was whisked away to a different hospital 25 miles away. My dad went with him in the ambulance.  That was the only and last time they saw him.

That was 46 years ago now but it is still a huge part of our family history.  My parents went on to have me in 1972, then my two sisters and grandchildren have followed yet Darren has never been forgotten.   He was a son, a brother, an uncle but there was never any positive way to remember him because we did not know where he was.  There was a void in our lives.  This chasm of heartache rippled through our lives. Mum would often talk about trying to find out what happened to him and where he was but didn’t know where to start both practically and emotionally.  Dad kept his thoughts and feelings to himself.

Then came the turning point in our lives. It was coming up to Darren’s birthday last year when we were watching a soap with a story line in it about still birth.  Mum talked again about trying to find him.  Where was he buried?  Was he buried or was he cremated?  She talked about how right it is nowadays that babies who do not live long are given respect and dignity in death and how the parents are supported in a way that she wished she had been all those years ago. This lack of recognition and respect for Darren continued to fill her with anger and sadness.  As I listened and watched her emotions, still as fierce as they must have been all those years ago, I decided that if she did not have the strength to find her baby then we would have to do it for her.

Only a week or so after this conversation I had found charity whose mission was to reunite parents with their babies who had had brief life back in the 1960s and 1970s.  The situation was not unique to us, but many families who had lost babies as it was common practice in those days.  There were families worldwide who had no idea what had happened to their child.  I contacted the charity and gave them the relevant details of his birth and all that I knew about his death.  On 25th September 2015, they phoned me with the information that my parents had been craving for so many years.

Mum and Dad now know that Darren was buried at Avonview Cemetery in Bristol on 26th October 1971, 3 weeks after he had died.  He was buried with another baby in an unmarked grave in a corner of the cemetery.  Sadly, you would not have known that anyone was buried there, but since they have found him they have been able to plant a tree to remember him and lay a plaque celebrating his short but important life.  This year would’ve been his 46th birthday, this year they will have somewhere to go to remember him.

For us, our family is now complete. He is no longer ‘Mum’s little boy’ he is our brother, their son and my children’s uncle.  He now has the dignity and respect that should’ve been bestowed on him all those years ago.

It is hoped that by sharing our story it may help others find their lost babies.

This is for you big brother xxx

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The cancerous Elephant in the Room vs Motorbikes, Ale and Video Games ~ A Guest Blog by Simon Bower.

My wife Karen, is one of those rare people who can walk into a party full of strangers and leave with new friends and social plans for the next few weeks. I can only marvel at her ease with strangers and the manner with which she effortlessly engages on a social and professional level with all. I, on the other hand, find this level of social intercourse for more of a challenge and making friends and acquaintances more of a slow burn.

Meeting the Brown family for the first time I assumed would follow a similar path, with me making my best attempts to cover my social awkwardness until I discovered that Dylan and I had something in common. This common thread was something that allowed us to communicate in a different language and I soon discovered that this language was something very dear to the both of us and one that we spoke with the same dialect. I refer to the language used by those that are professional on the outside while rebel on the inside, the language of emotion and freedom, of wide open spaces, the language of oil and dirt, the language that allows two strangers to unite over a common interest that revolves around an inexhaustible subject, the language of the motorcycle.

To those that know me and to those that are now rolling their eyes, I do promise that the remainder of this soliloquy will not be about motorcycles, although there is a risk that the odd motorcycle related nuance may permeate.

Dylan and I soon discovered that we had more in common, we both liked video games and real ale and armed with these three subjects it seems obvious that we were destined to become friends and conversation between us unlikely to be lacking. It was not more than a handful of months later and shortly after a reasonably raucous NYE, at which Dylan demonstrated his penchant for Patrick Swayze, that his son and middle child was diagnosed with ALL.

ALL doesn’t really mean anything to me, or at least it didn’t at the time, but basically its leukaemia, I still can’t remember what ALL stands for and a google search and subsequent definition would undermine my honesty. I know that it is cancer (I will not give cancer a capital c as it doesn’t deserve on) and I know that it nasty. I remember a tearful Mrs Bower telling me that ALL is the most common of the childhood leukaemia, which is a good thing. I found it quite difficult to see anything good about it, and while I refrain from using expletives I am confident that I could find a choice selection that could accurately describe my feelings towards this news.

I write from here on, intentionally selfishly about myself, how I felt, the effect it had on me and how it affected my relationship with the family hitherto known as Brown now as Team Brown and my friend Dylan. This will prove rather a challenge from one whom, according to my wife, suffers from an emotional deficit and lacks the ability to express feeling, but I will give it a go.

I am a methodical person, logical and I apply a somewhat Spock like objective perspective to decision-making. I am not prone to emotional responses, is it right to apply this Vulcan like process to such an emotionally evocative situation? Not necessarily, but that is what I did.

My thought process as follows. I am not medically trained and while I do consider that I would be quite competent with the administration of antibiotics, and range of creams and potions childhood cancer is a little beyond my level of unqualified expertise. I therefore quickly concluded that medical opinion and suggestion was best left to the experts. Team Brown have a great group of friends and family all very capable of providing support to the whole family and I am pleased to be able to consider that my family were part of this network. I just needed to define my role, in terms of what is required and what I would be able to offer, considering my personal qualities and emotional deficit.

I decided that the best I could offer would be to listen, offer no opinion just keep it business as usual, the norm or at least as close to normal as possible. While no psychologist, I am of the opinion that one cannot live and breathe a problem on a full-time basis and that time off is necessary to avoid the risk of the issue defining you. I can imagine, and I can only imagine, that having a child with cancer can become all-consuming and impossible to switch off from and so I decided that where and when possible that my relationship with Team Brown and my friend Dylan would continue to be as normal and that cancer would not dominate.

Handshakes became hugs and opportunity for coffee or beers became less frequent during treatments times but we still managed to meet up. While the cancerous elephant in the room was always present so was the friendship with the same talk about beer and motorcycles and our newly discovered shared frustration of spousal dishwasher stacking. The elephant was allotted time as and when required, but was not allowed to take over. I hope this was enough for at least a few moments of mental respite. On a more selfish note I have got to know a few of Dylan’s other friends who I now consider my own. They are all good chaps despite not riding motorcycles, and I know that they have all been there for Team Brown. I make no specific or further reference to them as this is not about them, but you know who you are.

I have never considered how I felt about the crisis that Team Brown have faced and continue to face. I have children myself, and so far, I am fortunate enough for them all to be healthy. I suppose what I think in this moment of contemplation is that the experience serves to reinforce the fragility of life and that what we take for granted can easily be upset. It reminds that irrespective of how challenging and difficult my children can be on occasion that these events would pale into insignificance should one of them become so seriously unwell. It reminds me that what I may consider as important today, could be irrelevant tomorrow and that as a parent having children the experience can be as wonderful as it can be devastating.

cancer (I have had to adjust my MS Word settings to start a sentence without a capital) will at some point choose to touch your life in one shape or another. There is no instruction manual to help you, you cannot prepare for it, you cannot plan for it and you cannot spend your life wondering when and where it may happen, for that way madness lies. What you can do is deal with it, pull up your socks, put on a brave face and even a smile if you can and meet it head on, and hit it hard. That is certainly the approach that I have seen demonstrated by Team Brown, the family that I am privileged to call friends. Those that know Team Brown or keep in touch via the interweb will be aware of their journey and I can only hope that the small part that my family and I have played has made their journey a little more bearable.

Dylan and I are still friends; I don’t think that anything has changed. We still meet up drink beer or coffee and talk motorcycles, although we have a new subject of conversation now, Adventure Motorcycling. It’s my birthday today and he bought me a T-shirt. It’s a size too big, so I’ll change it on my home, he doesn’t need to know that I am a size slimmer than he.

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Returning to Work When Your Child Has Cancer ~ A Guest Blog by Sarah Bennett – Day

We are nine months into our journey with acute lymphoblastic leukaemia. So far, our 3-year old son Ru, has done really well and we have thankfully had a relatively smooth path to date. Whilst the chemotherapy and steroids have some horrible physical side effects, it is the emotional impact of having leukaemia that has hit us all the hardest. For Ru, who was once a confident social boy, intense treatment regimes and the unpredictability of being held down repeatedly for procedures to be undertaken has resulted in him becoming understandably, insecure and anxious. He needs to be next to someone 24 hours a day.

During the early days of treatment I spent a lot of time wondering if I had missed Ru’s symptoms of illness. As well as being a mother to four other children, I am a midwife and work clinically and as a university lecturer. Had I made my life too busy or spent too much time building my career to notice how unwell my son was? My clinical health knowledge didn’t assist me at all in the early days. How was Ru still able to run virtually everywhere and attend nursery with only a third of the haemoglobin his body needed and virtually no platelets at all? Questions such as these set the seeds of doubt in myself regarding my capabilities as both mother and midwife. As such I made it my mission to ensure I would not miss anything of significance with Ru again.

So since diagnosis, Ru and I have virtually never been apart. To start with, both him and I found this comforting. However as the weeks went on and we spent the days avoiding public spaces to try to reduce chances of infection, being together non-stop has become increasingly challenging. Whilst I have tried to play with toy cars for days on end, I have found I am not as creative with play as I’d like to be and do not engage the way a three-year old desires. I have battled with craving to go to the bathroom by myself to get some space and then guilt when I acknowledge that I’ve been reading Facebook whilst simultaneously trying to play with Lightening McQueen. There are constant emotional dichotomies when I recognize that I am so very grateful Ru is still alive to be able to play with, yet at times, I am stifled and saddened at the loss of Ru’s normal childhood and my old life and identity beyond a cancer mother.

This awareness alongside a reduction in the intensity of treatment plans has seen Ru return to pre-school nursery on days when he is feeling well. We have seen him flourish since returning to play with children his own age and stimulated with creative play far beyond my capabilities. I have had to accept that I cannot make his treatment side effects better through just being next to his side everyday. That he would have had leukaemia whether I was a working mum or not, and that me being at home full-time will sadly, not be enough to prevent a future relapse. Whilst these sound like obvious statements, having a child with cancer can be so emotionally consuming that it makes you question every thought process you have. How will others view the fact that I have chosen to put my three-year old with cancer into a pre-school nursery? More importantly how much guilt will I feel if, in the future, Ru relapses and I have to face the fact that I choose not to spend every waking minute with him before he starts school this time next year.

These are questions I cannot answer. Whilst our pace of life has certainly slowed down and we have a greater awareness for each other, life and the simple everyday things, I am seeing that both Ru and I are now craving and ready for some of our old life. As such I am due to return to part-time work shortly.

I’m certainly nervous about some conversations I know will be held by kind enquiring colleagues, as cancer etiquette is incredibly challenging in itself. I am sadly still along-way off from thinking that all will be well in the future, or feeling completely at ease that I am choosing to be at work rather than with my son, even though I can clearly see both him and I need this. Simple questions such as “How are you / Ru?” are therefore not easy to answer honestly and have the potential to destabilize. For now, a general “today is ok” is likely to be a typical response. So whilst Ru’s needs and health will always come first, I am hopeful that a return to work will provide me with some welcome relief from non-stop thinking about cancer and will enable me to being less critical of every thought process and activity that I undertake with Ru regarding whether I have provided him with a good enough life if his life is suddenly cut short? I have to accept I cannot take on this responsibility myself and that Ru’s life is enriched with normal childhood activities and knowledge that he is surrounded with an army of love both in and beyond his home environment.

Childhood cancer – the “virtual” friend perspective. Guest Blog by Christa Harrison

We’d “known” each other for years.  Met on a parenting website.  Matching aged girls,  similar religious beliefs,  and just generally got along.  It continued as things like Facebook happened,  seeing snippets of each other’s lives,  comments,  not really big meaningful talks but a friend all the same.

Then Aillidh had a bruise.  Something was off about the statuses,  something was clearly worrying them more than a child with a bruise.  The message came filtered through the friendship tree. “Aillidh has cancer.”

I got home and held my baby girl close.  I looked at her and could not even begin to comprehend what my friend was feeling.  My words seemed so empty.  I normally have too many words,  but this time,  there were none.

I was also caught up in my own life.  Adam was “just” ill, then it was cancer (“good cancer” as he always called it – there was a cure without chemo).  I felt my world rocked with his diagnosis and again had no clue how to even consider understanding her world.  How magnified was that pain when it is your baby?

But it would be ok, right?  In the end.  They would go through hell but they do bone marrow transplants and chemo and things for leukemia?  Acute Myeloid Leukemia though, as I was soon to realise, wasn’t like the others.  Added in that she was mixed race,  there was then the push for finding a stem cell bone marrow donor who could fill that narrow percentage match.

The internet did its thing.  We pushed for people to register with Antony Nolan,  we raised money for her unit,  for somewhere close for her parents to stay,  for anything they could need.  Woolly Hugs got to work crocheting squares across the country so that Aillidh,  this innocent 8 year old girl,  could be hugged by all the “strangers” who cared.  We played Call Me Maybe, her favourite song of the time,  and we hoped.

I celebrated my daughter’s ninth birthday with friends and family. Aillidh celebrated hers with tubes and nurses.

Finally,  finally,  there was a match.  She was so weak,  so small,  but there was a match.  It would be over!

Then came the infections,  her tiny body needed to be able to heal them at the same time.  We clung to hope,  this collection of virtual friends and I.  We prayed to any god that we thought might listen.

I was at a party when I got the call.  I remember my world going silent and me sliding to the ground.  I didn’t know that my heart could break for a child I’d never held,  and a friend I had never met.

It always feels very selfish,  like it is claiming another’s grief,  like when celebrities die.  But my heart aches for Leigh every day.  I post statuses about my daughter and think “she should be having this.” I came across a comment recently on an old status where we were discussing what they would be like as teenagers and I’m angry that that was taken from them.  I hear Call Me Maybe and sing loudly, with tears streaming.

Then, last year, my son came home from school…  “Felix has cancer.” I held him so tightly.  My mind spun.  Not again.  I didn’t know you,  but my heart reached out to you.

Every year I run, climb, crawl to raise money,  every year there are new names,  but it is always, always, Aillidh at the heart.

Why Am I At The Tip? My Son Has Cancer

This is a repost of a blog that I wrote in April 2016.  It was a tough time.  I can’t recall too much about this period apart from feeling extremely vulnerable and pretty scared.   This was one of the first posts I wrote.  I remember it so well.  At about 9pm, after the kids went to bed, Mr Brown would scuttle off to shoot and kill people on the X-Box.  I would sit and stare, unable to concentrate on the TV or reading.  My emotional instability and worry about Felix prevented me from going out and telephone conversations were almost impossible as I could not cope with everyday chit-chat.  I was at a loss as to what to do to stop my mind wandering … wandering to places I really did not want it to go.

I’ve always wanted to write.  Surely this was the perfect opportunity?  I had the time, I had the space, I had a focus.  And so I did.  I was desperate to try to make some sense of what we were going through.  I couldn’t think clearly enough so maybe, through writing, I mgith be able to find some clarity in all of my feelings, emotions and thoughts.  And that’s how it began.

Night after night, 9pm came round and the children would go to bed, my husband would shoot and I would type.  Tip, tap, tip, tap.  Then I started writing whenever I had chance.  The children mocked as I typed with ferocity, trying to get it all out.  Everything that had been locked away in my mind for the last three months now had an escape route.  I couldn’t get enough of it and provided me with the therapy I needed at that time.

Little was I to know, that by outpouring my feelings and experiences of childhood cancer I would help other people going through tough times.  Little did I know how, 18 months down the line, writing would still be an effective form of therapy.  Little did I know that I would touch, and be touched by so many wonderful people by simply sharing our story.

For anybody considering putting pen to paper, do it!  You can.  It doesn’t matter what you write about, it doesn’t matter who reads it.  All that matters is that it helps you make sense of this complicated world we live in.

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 teeming 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 everyday 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!

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GOLD ~ a Guest Post by Paula Watts

Gold for first across the line,
Gold for a wedding band,
Gold for 50 years in time,
Gold for the holiday sand.

Yes Gold normally signifies wealth,
Yes Gold’s a reward for success
Yet Gold’s a colour for childhood ill health,
A Gold ribbon to represent:

Those who fight to cross the line,
Those who dream of wearing the band,
Sadly 50 years may be an elusive time,
Angel footprints on heaven’s sand.

So glow Gold for all of September,
For Childhood Cancer Awareness Month,
Wear your ribbon and always remember
The ordeals faced by too many, too young.

Feeling Helpless ~ A Guest Blog By Wayne

Hi, I’m Wayne. A proud, loyal and lifetime friend of Team Brown. Some of you know me, some of you don’t, some of you think you know me and some of you have never even heard of me. If you are reading this then I don’t need to explain the story of Team Brown, their heartache, their bravery, their determination (I think they call that Mindset these days), their inspiration and their lust for life.

As we are aware Mrs Brown (or Lady K as I know her) has made a fascinating, award nominated, probably won blog of life so far. Due to the popularity of this she asked me to write a blog post for her, like a guest post, (obviously the numbers are getting too high), how could I refuse, so I said yes and here it is.

Feeling Helpless.  That’s how I felt when Dylan broke the news to me about Felix.  It was horrible, a feeling that I never want to go through again. It was late one evening when Dylan text to ask if he could call me in the morning, a strange request, and I knew something was wrong.  I’ve known Dylan since school days, we’ve never scheduled a call before. I said ring me now if you need to talk, looking back on that night, I realise he probably needed to gain his composure.  Of course, I said all the normal things on hearing this horrific news, ‘Is Felix ok? Are you ok? Is Kerry ok? Are Talia and Rufus ok? What can I do?  What next? Will he be alright?’

All natural questions, of course, none of them were ok, of course, they didn’t know he would be ok! There is nothing I could do, or say that would make this situation go away, I felt useless.

As time has gone on it would seem Felix is doing ok, it would seem he wasn’t ill, it would seem this whole thing hasn’t happened. But it has, and well done to the medical team, and well done to Team Brown for making a nightmare seem like the New Normal. The strength, courage and bravery that this family has shown are beyond words. New normal?  They are busier now than when I’ve ever known them, for that, I salute you, Team Brown.  INSPIRATIONAL!!!!!! Because of Team

Because of Team Brown’s lust for life, the Childhood Cancer Awareness Campaign and a ‘can do’ attitude, it has spurred me to put myself out of my comfort zone and raise money for Cancer Research.  Felix will finish his treatment 26/04/19 and around this time I plan to row around the Isle of Wight (59 miles).  Giving a perfectly healthy Felix a cheque to hand over to Cancer Research will make me feel like I’ve done something to help. More to follow on the challenge……..

More to follow on the challenge……..

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