Reach out.

How we respond to our friends, colleagues and acquaintances in times of trouble is a personal and private matter.  Of course, there are no firm and fast rules and all situations are different but I can now vouch for how valuable it has been for us to feel and know that people are thinking of us.  The enormous outreach of love and support from such a variety of people has taught me an important lesson.  That is, it doesn’t matter who the kindness and compassion comes from; it is an honour to receive it.

In the past, I have watched people I know either directly or indirectly, face the greatest of personal challenges, suffer huge hardship and experience grief in its most raw form.  From a distance, I think about them constantly and wish I could more to help and make things right for them.  This is the thing, I tended to keep my distance.  I looked at their family and friends and tell myself they don’t need my love or support, they have so much around them, why would they need mine?  There has also been the concern that somehow my good intentions will just be slightly mis-timed or misconstrued leading to intrusion rather than support and upset rather than love.  Therefore, my imposition is unnecessary as they clearly have a close, loving family and an abundance of support from close friends.  Oh, how wrong I was.

Not one person that has reached out to us has intruded or upset us because of the timing or intention.  We have welcomed and relished every card, gift, text message, comment, conversation and gesture.  This kindness and love has comforted us all and each reach out is a like a coin of hope which gives us the drive to stay positive and keep smiling.  It doesn’t matter who, where or when the reach out is; whether it is close family or friends, colleague or acquaintance, passer-by or stranger, each one is equal in its impact.  Each instance has touched our hearts and our strength to cope has been fuelled by people showing they care – it has meant the absolute world.

In future, I will not support from a distance but I will make sure that my thoughts and love are known.  The power of a reach out is unknown but it is evident that goodness will always emerge from it.  Reach out!

FullSizeRender (2)

 

 

 

 

Advertisements

Twelve Years a Mum …

It’s the same every birthday but I can’t help but fondly remember their birth.  Each one was magical and unique in their own way.  With my first-born, her birth made me a Mum.

As it was my first time, I approached the labour of my first child with rose-tinted glasses and romance.  As with the pregnancy, I read and listened to what I needed to, but left the rest to intuition and hope.  I really had no idea at all what I was doing; I didn’t really throughout it all.  I remember when we decided to ‘try’ for a child.  We had been married for a couple of years, we had a house and a dog, it seemed the right time.  However, for some reason, I felt slightly awkward about it all, almost like I didn’t feel grown up enough (I was 31!).  Anyway, I knew I had to take folic acid but I was worried that someone I knew would see me buying it.  No problem, we got in the car and drove to Weymouth, 30 miles away, just in case!  It was all very exciting.  We had been ‘trying’ for six months when I had a chance conversation with someone about conception.  From this chance conversation I found out that you could only get pregnant at certain times of the months.  What?!? How was it, that I was 31 and had only just found out this critical piece of information.  It kind of summed up my naivety and looking back it really makes me smile.  My sex education at school clearly missed out a key piece of information but at least I knew how to put a condom on a banana.

Once I was armed with this key piece of information, we conceived quickly and announced the pregnancy at 4 weeks + 1 day to family and friends; I was so  excited.  Whilst I knew we were going against the grain by telling people before the 12 week scan, I wanted to share the excitement because I knew they would be there to support me if things went wrong. The pregnancy was pretty uneventful, I blossomed and puffed up quite spectacularly  and as the due date drew closer we prepared for the big event.   I was armed with my birth plan and labour playlist on the iPod; Oh, how I look back and laugh.  We dutifully attended the antenatal classes and heard over and over again that a first labour could last a long time and stay at home for as long as you can.  That’s so much easier said that done with your first.  The unknown nature of labour made any decision-making about going to hospital difficult; where was that balance between too soon and too late?

The due date was 22nd May 2004, FA Cup Final day, Manchester United v Millwall.  I had twinges the week before and these had escalated enough for me to call Mr Brown at school on 21st May and announce “it was time”.  Dramatically, he was in assembly at the time, so it wasn’t long before everyone knew “it was time”. Over the next 36 hours we popped back and forward to hospital, we took the dog for walk, watched the FA Cup final whilst timing contractions (15 minutes apart, what did I know!).  The due date came and went and we were finally admitted to hospital at around 2am on Sunday 23rd May. By now, people had become quite tired of asking what we had because he/she had still not arrived.  We had a ball in that maternity ward.  We listened to our labour play list, I floated around in the birthing pool (as per my birth plan) as Mr Brown read the newspaper.  My Mum mocks me to this day for texting saying “this is a doddle”.

As the sun shone and set on May 23rd, I was transferred from the local midwife-led unit to Poole Maternity Hospital as the labour was not progressing.  By the time I arrived at Poole, so too had my extended family.  Parents, brothers, sisters and partners were assembled waiting for the birth of a new generation.  What followed next was the breaking of waters (not on the birth plan), doses of syntocinon (not on the birth plan) and the swift use of ventouse (also not on the birth plan).  Our beautiful daughter was born naturally (on the birth plan) at 23:36 on Sunday 23rd May 2004.  The exact time I became a Mum.

And so, a happy 12th birthday to my wonderful daughter – thank you for making me a Mum!

Tonight is a worry night …

They don’t come along very often but when they do they are like crawling, jittery insects. And I know what it is, it’s because I’m tired.  Simple as that. 

I’ve always had worry nights as most people do.  Sunday nights feature quite regularly in the timetable of worry, particularly those at the end of a school holiday. Now, worry nights arrive much more frequently, at any time and in some instances they will take a little detour into the day shift as well.

What triggers a worry night is almost comedic in its nature but in the stillness of the night can be a catalyst for an unimaginable greatness. The trigger for me tonight is pee.  Ok, so before the #newnormal this would be ridiculous but in our current situation it is far from it. Just after supper tonight, there was a discrepancy between the amount of fluid that had gone in and the amount that had been peed out. Nobody appears particularly concerned, it was just mentioned, so why worry?  That’s what common sense and rationality would conclude.  Yet those sensible thoughts somehow disappear at night, instead the worry bug is triggered inside me and it is all ready to start eating away at me.  I have already had a good 15 minute thinking session about the seriousness of the diagnosis; prognosis, outcomes, complications. And here we are, wide awake, waiting for the next little creature to crawl it’s way in and devour any sensibility I have left.

However, tonight I will not let these bugs win.  I’m doing what I’ve thought about doing in the past; I’m facing the worries now, in the middle of the night and I will eradicate them by writing them down. Once they are down they are gone. I know worrying is pointless; it achieves absolutely nothing. Quite frankly worry bugs, you are eliminated, I really don’t have the time or the inclination for you at the moment.

Good night xxx

An ode to AFC Bournemouth from Team Brown

Well, I didn’t think I would ever write a blog about the end of the football season and the sadness it brings.  It feels like a never-ending void is ahead of us, much like the end of a long-term relationship that was once full of contentment, trust and love.

As the season draws to a somewhat delayed end, with AFC Bournemouth playing their last game against Manchester United, I ponder what will be for us over the next couple of months.  As a family, we have always enjoyed football and being part of the football community but this has merely been a casual affair rather than a committed relationship.  That was until Felix’s diagnosis.

In so many ways, we have fully committed to the relationship, and in return we have been loved, cherished and encouraged as all new lovers are.  We are excited by weekend dates at the stadium where outfits, hats and timings are carefully planned and executed.  We gain pleasure in chatting to others about our new relationship, and fellow supporters obviously share our love and adoration.  In turn, we have not quite converted ardent followers of other teams, but we suspect they desire a secret affair away from prying eyes.  This is all because of the magnetic and alluring ethos of the Cherries.

Until August, we will find ourselves in a state of temporary separation.  Much like the end of a relationship, we will miss the regular dates; the passion and the hunger for success which cannot be found elsewhere.  This aspect of the relationship has been a saving grace during Felix’s treatment for leukaemia.  The fixtures, the players, the manager and the supporters have all provided stepping-stones for Felix to aid his recovery and provided an outlet for his emotion.  This has been something that no therapies or medicines could ever achieve.

During the next few months, as we all recharge our batteries to ensure we are fully loaded for a second season in the Premiership, Felix’s treatment for leukaemia will continue.  I can imagine that many a fine morning will be spent strolling around the stadium, or browsing in the shop, just to feel the vibes and sensation of what is missed and what is to come.  Until then, when the Premiership kicks off again,  we will look to Euro 2016 and hope that England can provide an interim partnership for Felix and us, which will be as successful in its quest as it is in its relationship.

So, on behalf of Team Brown, huge congratulations to AFC Bournemouth for all they have achieved this season; a remarkable accomplishment owing to their unrivalled courage and dignity.

And lastly, a tremendous thank you to everyone at AFC Bournemouth for being such an inspiring and irreplaceable force in Felix’s battle.  We are eternally grateful.

FullSizeRender (1)

A dedication to my daughter…

Life goes on.

This is my daughter’s current mantra and how apt it is too.   It is an indication of where she is both psychologically and spiritually which is much different to the “you only live once” phase we went through when Felix was first diagnosed.  This was an immediate response to her realisation that life had changed at the drop of a hat.  Her life had changed beyond recognition, Felix’s had too.

The YOLO phase saw disappointment and sadness whichever way she turned.  I overheard her say to a friend that she knew it was bad because Mum and Dad were crying.  It upset her knowing that Felix would not be able to play football because she knew how important this was to him.  It upset her when we cancelled our holiday.  Despite this, she found the strength from somewhere to face the situation with humour.  She knew she couldn’t really do too much to help practically but she could make us smile and laugh.  This became her role, she did it well and it was refreshing.  It must have taken so much energy but she went out of her way to make sure that we were all as happy as we could be.  Her self-deprecating humour ensured that no matter what, we laughed and perfected our banter.  At times, her true feelings were exposed through her humour.  She did find it hard that Felix was getting all of the attention and his blog was doing so well but by joking about it she brought it to the forefront without issue; we could then understand where she was at.  The YOLO phase was a period of unease for her; she did not know what the future looked like.

At the tender age of 11, she has coped with our #newnormal remarkably well.  She has endured huge changes in both her personal and social life with the maturity and sense of humour that even some adults would find it hard to muster. The YOLO phase has been replaced by a more philosophical phase. Life goes on means an acceptance by her that this is our lot for a while. This deeper and more meaningful understanding of where we are at is a huge credit to her.  She hasn’t dismissed our situation or ignored it but considered and contemplated it.  This maturity in outlook and thinking means that there isn’t a fuss when she realises things might not work out how they used to.  This year we might be in hospital for her birthday.  Of course, she is disappointed but now understands that this is our #newnormal; there is nothing we can do but make the best of it we can.  It is now second nature for her to check her friend’s health before they come round or decline invitations because of unexpected changes in plans.  Whilst she finds it hard that we can’t go on holiday she looks forward to the time when we can go away again.  Life goes on…

Our beautiful girl who is Miss Brown, has had more to contend with over the last few months than any 11 year old should.  I so wish she hadn’t been exposed to life with cancer at such a young age but she has, and throughout it all, she has stayed up-beat and a critical factor in Felix’s recovery and our well-being.  We are so proud to see her friendships  grow and blossom as she settles in to her new school.  Her progress and attitude to learning at school continues to be of great importance to her and at no point has there been any doubt from her that this would be affected.  She continues to mature into a kind, funny and caring young lady who is taking all of this in her stride with great composure and dignity.  We couldn’t be  more proud of her, I just only hope she sees how remarkable and special she is.

 

Happiness is … having no plans.

What a change this has been for us.

As a family, we have always been regimented and ordered, even when came it to our leisure time.  With both of us working full-time we’ve had to be.  From routines in the morning to what we do at weekends, there are plans and contingencies to ensure that the needs and wishes of all of us are fulfilled.  For the majority of time, we are at ease and Team Brown is a family of peace.  Our systems work and life runs smoothly, as long as we plan.

At certain points in the year, we reach crisis point.  With  all of our individual calendars to coordinate,  from parent’s evenings to work commitments, sport fixtures to birthday parties, family dinners to football matches, sleepovers to medical appointments, football matches to birthday parties, sleepovers to school events, it sometimes just seems impossible.  When a crisis is foreseen, usually with tearful eyes and a sense of doom, I declare a state of emergency.  Mr Brown, sensing the impending war, rallies the troops to try to resolve the situation.  It is time for a strategy.  In his neatest handwriting, Mr Brown drafts the military plan and ceremoniously pins it to the fridge. It is official, Team Brown is on red alert and at risk of meltdown and all out war.

During a period of conflict, we prepare and conduct operations with the precision of the Elite Corps.  The manoeuvres of collecting children with seconds to spare, tasks of providing equipment for school, attendance at school events, sourcing presents, packing for school camp; all completed with heroism and honour.  At the end of a particularly intense and complicated manoeuvre, we share our stories over dinner with an imaginary cigar and whisky.  The military operation is taking all of our blood, toil, tears and sweat but we are winning.  Another successful mission, the state of emergency will soon be lifted.

Sometimes we suffer defeat.  During the most recent crisis, there was a failed party operation.  As per the military plan, Little Mr Brown stood to attention with full party attire, equipped with present, at 1100 hours.  A cross-reference with the party invitation, to confirm location and time, soon exposed an error.  Little Mr Brown was 24 hours late for the party.  All details of the party were recorded on the military plan but human error had led to the date being written inaccurately.  Operation party had failed.  We had a casualty.  The sirens went off, the troops leaped into action.  Tissues were provided for the snotty nose, apology text sent to party mum and the military plan revised to include an excursion to raise morale and help Little Mr Brown recover quickly.  In the past, troops have gone AWOL when operations have failed.  We saved him this time.

Under the command of Mr and Mrs Brown, the strategy and tactics of this particular conflict were successful with meltdown and all out war being avoided.  All events were attended and all children were safely collected and returned home safe; the state of emergency was lifted.  Our life was a military operation.  We were often frazzled and at risk of failing the mission but it was all we knew and what our life had become.  During periods of intense warfare (end of term/OFSTED/child illness) it felt as though we were in the middle of the 100 year war.  On Sunday nights I would text a friend with “helmets on, heads down, here we go”.  It wasn’t just about work though, it was the fact that our leisure time was also so planned and coordinated.  We had no space to breathe or just be.  Everything we did was planned to the nth degree, usually months in advance.  I would spend hours meticulously planning ahead; planning lovely things for us all to enjoy.  Every week or so, myself and Mr Brown would run through our diaries to make sure we were both up to date with the plans.  Sometimes, we would say how nice it would be to have a weekend to ourselves; to watch a film, go for a spontaneous walk or have a leisurely lunch.

This is where we are now.  We have no plans.  The ones we had, have been cancelled and our diaries are blank.  We can’t predict anything any more which makes planning impossible.  We are at the mercy of treatment plans , blood counts, temperatures and side effects. They take precedent over everything at the moment.  Therefore, we have to be spontaneous in its truest sense.  If things are in our favour we have to make the most of it at that moment, at that time.  If our friends are all well, a get together is lovely or if Felix is well, a stroll on the beach is energising.  We used to plan these things weeks well in advance and sometimes, when the time came, we didn’t fancy doing it but we still would.  Now we do what we fancy, when we can and when we want to.   It’s liberating.  Our lives are by no means less interesting or enjoyable because of it.  In fact, there is feeling that time is endless.

I know we will make plans again soon.  Holidays, events and planned get-togethers will become part of our mission once more and I do look forward to this.  However, at the moment, it is fair to say that happiness is … having no plans.

Chemotastic times

Chemo, chemo, chemo.

Before Felix’s diagnosis, I didn’t think I had the right to casually abbreviate chemotherapy to chemo.   Bizarrely, I felt that it was only those people who had cancer or were directly involved with cancer, who had the right to use the term chemo.  Now it is banded around our house as if we were talking about Calpol or paracetamol.  It’s odd.  In the past, chemotherapy seemed such a big deal; it seemed to be the evil of all evils.

Felix had his first chemotherapy on the evening of Thursday 4th February.  I wasn’t there when they hooked him up.  We didn’t even realise that it was going to happen.  I expected it to be an occasion which would be presented in an almost formal way.  After all, this was chemotherapy and chemotherapy is a huge thing isn’t it?  Actually it’s not.  That first lot of chemotherapy went through his line like water.  OK it was red but there was no fanfare, no big deal, all the kids were doing it on the oncology ward.

I still feel weird saying chemo.  It stills feels as though I don’t somehow have the right to say it; a bit like I’m a fraud.  We chat about it casually over dinner, “is Felix having chemo tomorrow?”, like we are talking about an after school club.  We talk about the different types of chemo Felix has: tablets, IV push, IV drip, injection, much like we’re talking about the weather.  The chemotherapy is really no big deal, it’s the side effects that are.

We have no idea what these side effects feel like and Felix struggles to describe them.  We can see them; the sickness, tiredness, leg pain, joint pain, ulcers, heightened senses, hair loss on a daily basis.  Therefore, according to my rationality, I have the right to abbreviate chemotherapy to chemo, we are in it, we are doing the cancer thing.  I still don’t like it though and I don’t want to be casual about it.  I really don’t chemo to be part of our world or part of my children’s vocabulary but it is and will be for the next three years.  Maybe we could rebrand it, call it another name, dress it up or dress it down, but we mustn’t.  We have to face reality and all that it brings so chemo it is; chemo, chemo, chemo.

Don’t create a monster…

Boy oh boy, this was the best piece of advice we were given at diagnosis.

I can remember, when we first came home after his first block of treatment, he hadn’t really washed for two weeks.  His battered body still had remnants of the iodine solution which had been used before the port was surgically inserted in his chest.  There was a smell about him, a hospital one that I was desperate to get rid of; I wanted my boy to smell like my angel again.  And so, I ran a shallow bath, prepared fresh flannels and towels so that I could wrap and swaddle my baby again.  Felix was anxious about bathing because of his port.  He hadn’t really looked at it and the thought of it scared him.  He did not want to get undressed.  He cried, he begged, he refused to move.  This was tough.  How could I force my son, who had been to hell and back in the weeks before, do something he really didn’t want to do?

The time came for him to go to school to see his friends.  Felix tried everything not to go: feeling sick, headache, tiredness, tears, emotional blackmail.  I knew it was the best thing for him as he was becoming isolated and losing confidence.  We needed to break the ice so that he could engage with his peers and regain his confidence.  Felix and I sat outside the school in our car, tears streaming down his face, pleading not to go.  It was so hard watching my baby cry knowing that I could quite easily take his fear away by simply taking him home.  It tore me up inside; again a voice piped up, ” don’t create a monster.”  I  found my inner strength, wiped his tears away and held his hand tight as we walked into school.  After a long hour, sat waiting in the car, he bounded out with a huge smile on his face.  He did something he didn’t want to do; the monster was kept at bay.

There are many things it would be easy to ignore or avoid because of what he is going through at the moment.  I could quite easily let him off doing chores, or having a shower or sharing with his siblings because of the pain and suffering he is enduring.  However, kids need boundaries, all kids need boundaries, kids with cancer need boundaries.  If Felix did not have boundaries, he would quickly turn into the monster we had been warned about.  To bend the rules for a short time is fine when you can rein them back with relative ease.  Whether it is a bout of chickenpox or a holiday, we all need to the chance to run free for a short time with the knowledge and security that normality will resume sooner rather than later.  This is not the case for Felix, his treatment will last for just over 3 years.  We cannot let him run free for that distance because he will never make it back .  The boundaries need to stay in place, despite what he is going through, to ensure that he continues to feel safe, secure and at one with who he is to avoid any allegiance with monsters.

monster

The Stress Counter – what is your idle rpm?

Driving is when I have the opportunity to gauge my stress levels.

As a full-time teacher and Mum of three, I have always enjoyed a busy and hectic life.  There are always points in the year which are more stressful than others.  For us, this is usually the end of term; we are all shattered, the kids as well as us.  The end of term sees our usual routines change, only slightly, but this can trigger a rise in our stress levels.  Whether it’s the end of term discos, gifts for colleagues or collapsed curriculum days, it means we need to think and organise beyond the norm which, when you are already running on empty, can be enough to push you over the edge.

Our experience of stress though, has fortunately been limited.  I did experience a spell in 2014 when I secured a Headteacher role at a specialist school for children with special educational needs.  When I accepted the role, there was a nagging uncertainty that I would be able to combine being a mother and a Headteacher.  Sure enough, after six months leading the school, I began to realise that the cogs were starting to fall off both at home and professionally.  I could not sacrifice the needs of my family to give the role the 24/7 commitment it needed.  And so I resigned.  Until now, this was the most stressful time of my life.  I felt I had let everyone down by not rising to the challenge, my colleagues, students and their families and my own family and friends.  I was also aware that this could impact on my future career, however, I had to take the risk for the sake of my family and my own mental health.

The stress realm we are in now is a whole new world.  Before diagnosis, my idle stress level would be around 3oo rpm revving to about 3500 rpm at peak times namely: end of term, work pressures, poorly child, family worries, money worries, the usual stuff.  In the last couple of years, I might have reached 5000 rpm for one reason or another, but those peaking revs returned to idle as quickly as they had risen.

As I drive, I watch my rev counter and continue to relate it to recent events.  At the moment, my current idle stress level is around 2500 rpm due to the constant and continuous risk of infection and immediate hospitalisation.  There is no rest from this.  My stress levels rev to about 4500 rpm at least twice a day as Felix takes his temperature, I know his rpm does as well.  There are the incidents when I know Felix is going to be in pain or distressed, then we see the level go to around 7000 rpm. This is when he has to have his port accessed, when he says he feels sick, when he has blood draws, when he looks sad, when he has a lumbar puncture, when he sees his friends enjoying a football match, when he has to take his tablets when his mouth is full of ulcers and so on.  Then there are the times when stress levels threaten to go off the dial, hovering around the 8-9000 rpm mark. This is when his temperature does spike, his port doesn’t work, he is sick, he is sad, we are in hospital and so on.

I have wondered how much stress humans can take.  You can hear an engine when it is being over-revved as it squeals and screams in torment.  I suppose you can see it in us as we scream or cry or withdraw.

Luckily, Team Brown has a huge amount of support.  My wonderful family, friends and social media community continue to service my mental health to keep my rpm at a healthy idle.  They provide the oil of laughter, humour and encouragement, the petrol of good food, wine and cake and the maintenance through conversation, text and acknowledgement.  Thank you for coming along for the ride, I hope you enjoy it and there aren’t too many surprises.  Happy driving!

 

Middle-aged snoring and flatulence.

This is one of my  conscious thoughts when I am in hospital with Mr Felix.

Whilst I am in hospital with him, there is the constant anxiety regarding the life saving treatment he is having, the risk of infection and the psychological impact of his diagnosis.  These fears often become magnificent in their stature at night; I do dread the nights.  I often lie awake with adrenaline trickling through my veins and thoughts running around my mind.  Sometimes, it is because of the distant cries of children who are in pain and scared, at other times it is because of the constant beeping and alarms from the variety of machines that give our children a lifeline.  At other times, I know I cannot sleep because I am thinking about my middle-aged snoring and flatulence.

For those who know me well, this musical element to my sleeping has often led to a passionate debate who should and should not share a room with me.  However, this stay-cation is not with family and friends, it is with people who do not yet share the love and amusement of my melodic rhythms. Oh, the predicament.

At night, as I sleep next to Felix, I am at my most vulnerable.  Whilst the nurses are stealth-like as they glide between patients and the children gradually relax into a world of sweet dreams and sleep, I lay still.  In the darkness and stillness of the night, my inner-most thoughts and feelings are exposed to the world.  These sad and worrying feelings are alien to me; I am not comfortable with them and their ability to pounce throughout the night.  I am used to having control over my mindset which I go to great lengths to ensure is positive and encouraging; not negative and damaging.

So I do what I do best when I’m uncomfortable with how I’m feeling, I turn to humour.  This is why, when I lay in bed at night waiting for sleep to envelop me, I think about how I might wake the ward up with my nocturnal snoring and flatulence.  I can imagine myself in full glory, the musical middle-aged woman turning the stillness and quietness into a full orchestral perfpormance.  These thoughts mask my fears, worries and anxieties; they allow my imagination to run wild.  So when I fall asleep at night, I do so with a wry smile on my face looking forward to what entertainment is in store for my fellow sleepers.