Life is Cruel

In the last 24 hours, another family and community have been ripped apart by the devastating news that a young girl has died from cancer.

The statistics tell us that cancer in children is rare – it feels far from that at the moment.

I had the pleasure of teaching this young lady and meeting her at an oncology review.  Her wide smile, forgiving eyes and determination told the world that she would do all she could to beat her diagnosis.  I thought she would.  Heartbreakingly, she didn’t. As is the case for so many children.

Daisy will always have a special place in my heart along with Alice and Ernie who have also passed away this year.  Their smile,  determination and passion will be buried deep in my soul.

These wonderful, special and unique children will live forever in our memories.

But they should not have gone so soon.

They will always be missed.

Life is Cruel.

#Daisy #Alice #Ernie #Jack #Ciara #Gaia

Daisy

 

 

 

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Back from my Blogging Holiday!

It’s been so long since my last blog and this has been a conscious decision following Childhood Cancer Awareness Month.  The response to my #ablogaday was phenomenal and thank you to everyone who contributed and all who engaged with it.  What I was not prepared for was the emotional toll that came with it.

Throughout September I was inundated with blogs from friends, family and virtual friends who all wrote enlightening and inspiring pieces straight from the heart.  Of course, I had to read and edit blogs where necessary, I hadn’t thought this bit through.  At the beginning, it was fine but as the days went on, the rawness and honesty in these blogs started to weigh me down.  It was the hurt and the pain that so many people carry round with them that hit my heart.  On 25th September #ablogday stopped.  In all honesty I think a was waiting for Mr Brown to contribute, and once he had my pursuit was over.  I needed a holiday so I packed up my Blog and spent some time away.

I’m back with a new haircut and everything!  I’m back and really looking forward to writing again.  I’m back recharged and emotionally back on form.  One thing that makes me so proud of Mrs Brown’s Blogs is the positive engagement that takes place and the supportive platform it offers others.  This is want I now want to build on.  Whilst Childhood Cancer is still part of our lives and always will be, I want to move away from it being the main emphasis of my writing.  I now want to explore the myriad of parenting and family experiences that we all enjoy/despair of each day.  There will of course be the added dimension that my son is in treatment for leukaemia but all families have their unique dimension.  And that is what is so wonderful about us all.  We can all celebrate our achievements, worries and concerns – none are more significant than others, it’s all about perspective.

I’m so pleased to be back and look forward to sharing my thoughts and feelings about the crazy and often confusing world around us.  I have plans to explore behaviour as communication, our daily routines and how we goal set for ourselves and our family.  I want to start to combine my emotional journey with my experience as an educator to explore the everyday nuances of life.

I hope you’ll continue to join me on this journey.  I feel truly blessed to have the opportunity to be excited again – Let’s chat about and enjoy those small things!

 

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Majorca October 2017 – A Blogger’s Holiday

 

#beinghuman by Rose Driscoll

Doing the dishes is something I hated doing, it made me feel like a non-stop washing machine I felt anything but human while doing this despised chore.  Oh, how I loathed a full sink no matter how many times I cleared it the sink would still be full by the end of each day.

Most days I did everything I could to avoid the mess, putting it off, I even thought of buying a dishwasher but even then I would still need to load them.

I thought doing the dishes was pulling me away from the things that really mattered like spending time with my boys it was also pulling me away from things I enjoyed like reading, watching tv, going out…all I could see was this never-ending full sink.

However, since Isaiah got sick my views have been changed as these few months I’ve felt like a robot going through the motions to help Isaiah survive. I’ve had to do a lot of things that I would happily rather do the dishes than doing them. Nowadays I feel the most human when I’m standing at my sink with a cloth in my hand and elbows deep in fairy liquid washing dishes beings me back a sense of normality in a very chaotic chapter of my life.
Being human is doing things you really don’t want to do even the dishes which I now embrace with welcoming arms.

#beinghuman

washing up

 

Life’s Firsts

When we’re born it’s all about our firsts.  Our first poop, our first smile, our first sleep through the night.  Then we celebrate the first step, the first word, the first day at school.  It’s all about firsts.

As we get older those firsts dwindle but they are still as important.  The first date, the first job, the first baby.  They are still there but less often.  That is until some form of trauma or loss occurs.

I now find myself relishing firsts in the same way as I did when the children were first-born.  Since Felix’s diagnosis, firsts have become all-encompassing; the first haircut, the first birthday, the first Christmas.  We are currently increasing clinic visits to three weeks for the first time, Felix got winded for the first time yesterday, we are soon to go on our first holiday abroad since Felix was diagnosed.

When we are growing, these firsts are exciting and exhilarating.  This time around I approach these firsts with caution and trepidation.  I can remember last year as the first Christmas loomed upon us – I was pleased and relieved to see it come and go.  The seconds are easier, this is now the #newnormal.

This occupation we have with firsts are apparent not only following trauma but also through loss.  Any first moment, experience or occasion without a loved one is significant and tough.  My heart goes out to all of those experiencing firsts through loss.

We all have and do live through these firsts.  When we are younger, firsts tended to be emblazoned with happiness and delight.  As we get older our firsts become shrouded in hope and resilience.  It is this hope and resilience that is #beinghuman.  In the most emotionally charged moments, we survive.  We survive because we are driven by our inner soul and our we are motivated by our mindset. We know that we have to live through these firsts before they become a last.

As our first foreign holiday approaches, I am drawing on everything that is #beinghuman so that I enjoy and relish how lucky we are to have this first.  I have to bury my worries and caution and replace my feelings with the happiness and delight that I remember from those wonder years.

I really can’t wait for the second though!

#beinghuman #doit #blogit

Life's firsts

 

 

#BeingHuman ~ A Guest Post by Sarah Burbidge #2

The Heathrow airport scene in Love Actually is what being human means to me. The hugs and the excitement of being reunited with those you care for, being loved and supported. Whenever I walk through the airport gates at a UK airport, I always feel that someone will be waiting for me, which is silly as I’ve got my train ticket booked and everyone will be working!!
I suppose the thought arises as you’ve been away and you are sure you’ve been missed or hope someone missed you.
We do need love to feel human, be this from family, friends or just having someone there to look out for you.
What if due to circumstance you don’t have that, if you choose a life of solitude, does this make you less human?  In my opinion yes it does, but a Buddhist monk would disagree.
You need positive connections to feel human.
Charities are set up to support those who don’t have support from others. If they didn’t have this then they must hate the world. Surely this is when drug abuse,  violence or/and you get radicalised into a group who latch into your ill beliefs and situation.
When I hear stories of terrorist or racist violence these people to me are not human. I’ve googled the definition of humanity many times in recent years, trying to comprehend ‘why someone would take someone’s life’. Within the headlines, bombers are often called cowards. Does this mean that to be human you need courage, I think so.
We started on this planet fighting with dinosaurs didn’t we and sending our husbands off to hunt for food for our families and fight for our country. That must have taken a lot of courage on both sides.
You need courage to feel human.
I’ve talked about terrorists, but what about bullies are they human? Yes they are, they are humans making mistakes, based on people making mistakes on them.  But if you don’t follow my moral code then no you are not human as you lack compassion and empathy.
You need to show compassion and empathy to be human.
But what if you lack the skill to show empathy. What do you become? What if you don’t have the ability to feel, see, touch. Are you less human?
No no you are still human on a different/unique scale to most.
So in summary being human is to exist with other humans and appreciate the world and beauty around you on whatever scale that may be.
Thanks Kerry for making me think 🙂 however I don’t think I’ve got an answer…..
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A Guest Post #BeingHuman #blogit #1

I was recently asked if I was interested in supplying a blog for a fellow oncology mum’s blog page. She’s a highly respected and successful blogger so it’s nice to be able to get to a wider audience and increase my own visibility, but truth be told that isn’t the reason that I chose to write. I’ve mulled over the topic for a while thinking of what angle I can take on the topic, coming up with some ideas but nothing really felt right or held any cadence, that is until 10 minutes ago when I got a text from a young chap I met at the weekend – calm down, much more harmless than you think!

You see, we were at a charity event called the LimbPower Junior Games which is an annual event at Stoke Mandeville Sports Centre. It’s a sporting event for those with limb difference, in which children get to try a vast range of adaptive and inclusive sports. We went last year, when M was just finished chemotherapy and was only just coming to terms with being an above knee amputee. The whole family participated and loved it so much that we were determined to go back again this year. It is a fab day and LimbPower really is a worthwhile and forward-thinking charity, so if you know someone who has limb difference (congenital or acquired) they are worth looking up (limbpower.com).

Danny spent a considerable amount of time chatting to M and discussing how she can communicate more effectively with our Enablement Centre in order to get the most from the provision of a sports limb. He has since texted me asking for further contact details so that he can forward information to help us in selecting limb components etc, and it was then that I had my lightbulb moment (which M will find even more amusing as only this morning as I was driving her to school she asked what I was doing with a lightbulb in the car’s centre console “Do you hold this up above your head Mum, and wait for a great idea?”, “Oh if only it were that simple Love” I replied – but I think she might have a point, so I might not remove it just yet!!).

But Danny’s text today made me realise the ‘being Human’ has what has gotten us through M’s cancer / amputation … Being human to me, is about having frailties, recognising them in yourself and seeking help, but also supporting others. There have been so many individuals who have picked us up, comforted, shown love, care, compassion and thoughtfulness to us (all started out as complete strangers – many have become trusted friends and caring advocates). These connections were often forged when we are least expecting them and probably when we most needed it. I personally don’t believe in divine intervention but to clumsily paraphrase … maybe there ‘are’ more things in Heaven and Earth than in my philosophy. All I know is when I needed strength and guidance it came to me – through human contact and interaction. It only takes a few moments looking at current global events to be reminded of the quote “When I was a boy and I would see scary things on the news, my mother would say to me ‘Look for the helpers, you will always find people who are helping’” F. Rogers.

I also feel that truly ‘being human’ is contagious. I see first-hand those that have been helped reaching out and helping others, through charities or trusts, bereaved oncology parents go forward with their grief and try to make a difference to those who are still going through treatment, those who are widowed set up groups to elicit further ongoing support … the list goes on. Behind every charity or support group you encounter I believe there will be individuals who have experienced pain and loss and want to assist others.

For me too it is also becoming important to contribute and support others, feeling united by our common experiences and with that aim of trying valiantly to help and support those who are going through similar circumstances. I didn’t choose to become an oncology mum, but now that I am, I have developed a skill set and experience base that strengthens my daily life. I know what diagnosis day feels like, what surgery day fears are, and how every x-ray brings ‘scanxiety’, and I have learned many techniques in coping and not coping. These have been born out of the human beings that have surrounded me through my daughter’s diagnosis and treatment and beyond.

So, my reason for doing this blog is for someone I have not yet met, but I feel to be a kindred spirit who has soul, grit, love and smidgen of vulnerability, whom has listened and counselled me and who I know will continue to do so, and therefore I feel universally lucky to have this fellow human being as my friend.

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Childhood Cancer Awareness Month ~ a daily reminder of how shit childhood cancer is.

I am emotionally drained by Childhood Cancer Awareness Month.

This is somewhat ironic I know.   I have done all I can to shout as loud as I can yet it has taken its toll and we’re not even at the end of the month yet.

The honesty of the contributors and rawness of the blogs have hit hard and after 25 days I feel completely exhausted by the emotional impact.  This begs me to question the impact of Childhood Cancer Awareness Month.  I have found the constant reminder on social and mainstream media quite difficult to bear.  At the beginning I was inspired to do all I could to raise awareness; today I feel emotionally spent.  The constant reminders of the pain, suffering and turmoil that families go through are too much.  We are too close.

We were just getting to the stage where, occasionally, I could forget that Felix is still treatment.  The intense period of treatment was turning into a distant memory and the future was looking positive.  I didn’t think #ablogaday through at all.  Every day in September I have had to revisit emotions and feelings that I had worked hard to suppress and bury.  What a muppet I am!

Therefore I am opting to end my #ablogaday today.  We did well – 26 days of back to back blogging (well apart from 16th September which was Ru’s birthday and I forgot!).  I would like to thank everyone for their heartfelt contributions, comments and messages.  I think we have done what I hoped we would which is getting people talking about childhood cancer.

However, I’m done with talking about it for now for a while.  Childhood Cancer is a wretched thing which only causes trauma and grief.  I need to talk about something else.  I have loved receiving blogs from people and I hope you guys will continue to be empowered to write as I believe it can help us make sense of this world and support the healing process.  Therefore, I would like to continue to invite people to contribute their blogs for publishing on Mrs Brown’s Blogs.  With this in mind, I declare that October will be dedicated to blogging about #beinghuman.  What does #beinghuman mean to you?  Who best demonstrates #beinghuman?  Where do you observe #beinghuman?  Please share your insights and philosophy – no rules, constraints or formula – just subjectivity, relatively and creativity!  To contribute to #beinghuman, please send your blogs to mrskabrown@yahoo.co.uk.

I can’t wait to hear from you all; there is an abundance of talent and inspiration hidden in the world around us.  Please share for us all to enjoy!

Thank you for your continued support, love and compassion – it means the world!

Mrs Brown's Blogs

 

In Praise of a Bombay Badboy ~ A Guest Blog by Mr Brown

I’m not a fussy person. I tend to get on with things. Not wanting to make a fuss. It would appear, however, that I have a sort of mental ‘Room 101’ residing in my head. If the world could hear my thoughts, I think I would be banished to a small, undeveloped desert island. Population of 1. Me.

One thing I do very well is worry. I’m one of life’s habitual, perpetual, unashamed worriers. I can’t quite tell you when it came on, it’s just always been there. When I was at school it revolved around Friday spelling tests and being late. Both of these have remained with me into adult life. Thank God that Bill Gates got together with some other like-minded individuals and invented an automatic spell checker. Without which, yuu wood stugl to make aani sens of this. (See what I did there)

Lateness is another one of my pet hates, I really can’t stand it. Lateness in any form tells me one of two things. One, you are disorganised and live in a chaotic world so unpredictable you struggle to factor in simple things like ‘travel time’, ‘traffic’, ‘telephone calls’, ‘dressing oneself’ or even ‘applying makeup’. Any of which could derail a secured meeting time by at least half an hour. The second is that you simply don’t care enough.

Other things I don’t like include complicated coffee. I make great pains to order a white coffee in any coffee shop that will have me. If my request is met with complicated embellishments, I order tea. English breakfast tea for one. As for needing my name, I have no idea why. If I was planning on running from the shop, completing a half marathon and then returning, I’d leave a name and possibly reheating instructions. Oh, and an approximate time. I’d hate to be late and keep them waiting.

Hospitals also used to be on my hit list. How many times do people say ‘they hate hospitals’? I used to say the same thing. Hospitals, awful places. Needless to say, I’ve changed my opinion.  Hospital buildings appear cold, austere almost soulless in the way their erect frames dominate the skyline. I remember visiting hospitals when I was younger. Often because an elderly relative had been taken ill. I rarely, if ever had to visit a youngster. A child.

You see hospitals are for the old, the infirm. They aren’t really designed for children. But look beyond the walls and you see true miracles. Miracles being performed in an almost perfunctory manner. Not by superheroes, but by normal folk. With normal names like ‘Jane’, ‘Martin’ and ‘Jo’. They go about their everyday business with calmness, respect and passion. A passion to make a difference to young people’s lives. To all our lives.
Without these heroes, hundreds of children and hundreds more parents, grandparents, uncles, aunties and friends, would be staring into the abyss alone. Unsure about what to do next. What might or might not happen to their loved one.

If ever you find yourself complaining about the surgery running late, or the appointment needing cancelling, it doesn’t change the fact that the people who work in the NHS are my heroes. They have saved my son, on more than one occasion. They were there when all my children came into the world. They will be there for you when you need them. So don’t worry. They are ace.

I guess the title of this blog appears slightly detached from the content so far, but bear with me for just a little longer. Pot Noodles are oddly one of my guilty little pleasures in life. Simple, satisfying, warming and easy to make. It’s also fantastic how little washing up is created. I have lost count of the number and variety of these humble noodles in a cup I’ve consumed while being in hospital. It’s possible that I have consumed my own body weight in these salty, powdery treats. That’s quite a sobering thought.

From this point on I shall always associate Southampton hospital and Pot Noodles. You see, they provided a momentary respite from the ward. A time to wander to the family room, flick the kettle on and sit. They provide instant warmth. A moment of normality in a less than normal world, where blood counts and lumber punctures are the norm. The humble pot gives up its flavour, its sustenance by design, to fill that gap. To fill both your time and your stomach. It provides a connectivity between you and the other parents who sit, drained, almost motionless over their microwave meals for one. They often signified the end of a long day. Preceding a fractious night of broken sleep and piss pots. But for those 5 minutes, I felt comfort.

To be honest, I wouldn’t recommend making them part of your next diet plan. Otherwise, you too could end up on a ward. Psychologically they were delicious. Nutritionally, questionable. It’s funny what you associate with different times in your life. I’m already thinking about which one to celebrate with when Felix gets the all clear in a little over 18 months. Maybe just one more ‘Bombay Badboy’, or I could go all traditional with a ‘Beef and Tomato’. Or then again maybe a just a tea. Decisions, decisions. Mr B.

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It’s just a blip ~ An Anonymous Guest Blog for #CCAM

Is this a flippant comment? Naively, I didn’t think so! On hearing the shocking news of Felix’s diagnosis this was the sentiment I wanted to pass on. At the time I firmly believed Felix’s cancer story would be but a couple of tough years which would eventually become shadowed by a lifetime of love and laughter.

“Why on earth?” I hear you mumble in disbelief. Well ironically until today, this was my raw personal experience of cancer. At 16, I watched as my beautiful Mum had her tumour removed and suffered the discomfort of radiotherapy. However, during the process, she evolved into a fearless creature that insisted my sisters and I became fiercely independent because life is not to be taken for granted. This attitude still persists!

My caring and fearless husband has overcome his blip an astonishing four times. I occasionally wince as I witness the poor junior doctor’s arms shaking under the weight of his medical file, but each painful but genius treatment has worked. We’ve even beaten the odds and have two beautiful, boisterous boys to love. So up yours cancer, we win!

My determined sister also took on her blip. The cancer was cut from her leg; she completed the gruelling 26 mile Jurassic coastal walk!

With each of these blips I’ve cared, comforted, cleaned lines and cut up food. I’ve felt anger, frustration and isolated. However, the dark 3am stints eventually dissipate and before you know it you’re planning holidays and making memories, whilst exuberantly holding onto one another and breathing a sigh of relief.

This weekend changed everything. I wept as I watched my brave and loving Mother-in-law breath her last ragged sigh of relief…with it my ideology about cancer also dissolved.
As I experience the strongest of families, struggle with their desperate waves of grief, I believe it is incontestable that we need more research, because my children need their Grandmother, Father, Nana, Auntie and friends.

Therefore I apologise, it’s not ‘just a blip!’ Naivety carried us so far but in the end, the violent reality of cancer crushed us.

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A Letter From a Stranger ~ A Guest Blog by Katherine​ Hediger

Dear Kerry,

I’ve hesitated for hours and days before finally deciding to write … and this message has sat in my outbox for a long time too.

I follow your blog, and from what I gather our stories are quite similar, and I suppose I just wanted to share mine with you – so here goes …

It was my sister who told me about you. She lives in Bournemouth and had heard about you and Felix’s Facebook page.

My son Theo was diagnosed with ALL in January 2017. Out of the blue – a thunderbolt that shocked us to the core. He was 12 yrs old at the time and we were in the UK to celebrate my 40th birthday with family when he really began to get sick (we have lived in Switzerland ever since Theo was a baby). His symptoms were mainly chest pain, so this sent the doctors off on a wild goose chase, with ECGs, chest x-rays, MRI scans, IV antibiotics. First of all, we were told it was just down to a growth spurt. Then it was inflammation of the cartiledge between his ribs and chest bone. Then it was suspected pleurisy. He was kept at hospital for 5 days while they tried to keep his temperature under control. He was in incredible pain. He screamed and begged to end his life – delirious and scared in the middle of the night. I watched various doctors scratch their heads – trying desperately to confirm a diagnosis. The chest pain eventually disappeared, but his hips hurt. Then his shoulders. Then his legs. He started creeping around like an old man – crying in pain when his knees gave way under him. After 7 days of antibiotics, we were finally able to return to Switzerland, and the doctors handed me the results of his last blood tests, vaguely explaining that there were some anomalies (presence of blast cells) that we should follow up with Theo’s paediatrician once back home. They even said we should possibly consider a bone marrow test, which seemed bizarre and totally random but I was told there was nothing to worry about.

We managed the journey home, although I’m not sure how. Airport assistance provided me with a wheelchair to push Theo through the terminal building as he could barely walk. He cried in agony for the duration of the flight, and I just knew looking at him that something was very wrong – he was grey and his eyes hollow. I forwarded all the reports from the hospital to his Dr, and we were there first thing the next morning. Theo was already fed up of being poked and prodded and just wanted to be left alone. I told him I was not stopping until I knew exactly what was wrong. The evening before my family (who had researched some of the terms from the hospital report) tried to warn me that things didn’t look good, but I wouldn’t listen. I was in total denial.

The paediatrician examined him, felt his liver and spleen which were enlarged due to the white blood cells and sent us later that day to the University Hospital in Lausanne. We arrived, I explained the whole story again, they took bloods from Theo, and within a few hours, we were being told the news that even today seems impossible. Theo had Acute Lymphoblastic Leukaemia. He was being kept in hospital in isolation. They would take a bone marrow sample the following day to confirm which type of Leukaemia and to administer the first dose of chemo into the spinal fluid. I was calm – totally and utterly calm, listening, trying to take in everything they were saying. Then frantically making phone calls. I didn’t cry. Not one single tear. Like I was on autopilot. The next 10 days are a bit of a blur. Theo was taken to the operating theatre early in the morning and they inserted a tube into his neck. I have never seen anything so horrendous. It bled and it hurt him like hell. He started on the steroids that made him wake in the middle of the night craving cheese. Days and nights merged into each other. I informed my work colleagues of what was happening, and Theo’s school. The grapevine started to spread the news.

Then after 10 days were allowed home. The tube in his neck was removed awaiting the portacath to be inserted a couple of weeks later. We came home with a file of information, medication, and the awful realisation that the Leukaemia was still there. I was overwhelmed by the responsibility of caring for such a sick child. Theo was scared. It was different being ill in hospital – that’s what hospitals are there for. But being at home felt different. Things had changed definitively.

We ploughed through the next weeks, waiting impatiently for the results of the second bone marrow test. The doctors were pleased – there was no residual disease; Theo was reacting well to the treatment. Ironically it appeared that the sicker he was, the better his body was reacting to the chemo, which was good for beating the Leukaemia. Difficult to explain to your child when they’ve just been sick for the 5th time on an empty stomach. The reality sank in. Relentless sickness, headaches, tears, despair, hospital visits, questions. Theo hit some very dark times at his worse – one time he headed to the kitchen and tried to grab a knife telling me he would rather be dead than have to go through the treatment. I held him forcibly on the kitchen floor. My partner held us both. Everyone was sobbing. I told him that there was no option to give up. He would fight the cancer every step of the way, and I would be by his side.

He missed the rest of the academic year, which in this school system is an important one as the kids are then streamed for either higher education or a less academic route for later on. Luckily the school let Theo continue in the group on which he had set his sights. But this year is already proving tricky – we are a few weeks into the new term and he’s just reached the end of Delayed Intensification, and has already missed lots of lessons. The big difference is that we know that soon, he will hopefully be much more in school – so anything he misses now, will only have to be caught up on later. He’s putting the bar high, and I find myself worrying that if he doesn’t do as well as he wants, he will become demotivated and will give up. I spend a lot of time wondering how much I need to make him work, given the fact he is still having frequent chemo and suffering from all the side effects. The boundaries are less clear than before … how to maintain rules when the circumstances are so different. A very grey area which I have struggled with on numerous occasions. His games console has been at times his new best friend and a great source of consolation when he was isolated from almost everyone, but like every teen – the temptation of the screen is strong and I don’t want him glued to gaming just to fill the void his illness has created. But as one of the nurses pointed out, he needs time to relax and free his mind. It’s all about balance. And there are no rights or wrongs, just everyone trying to do the best they can.

Unlike most cancer patients, Theo only lost his hair very recently. It was just a few days before school (perfect timing !) and he called me panicking from the shower. Hair in his hands, in the sink, falling off onto his towel and t-shirt. It became progressively thinner and thinner over a few days before we shaved the rest off. Not an easy thing, especially at an age where looks are becoming so much more important (he turned 13 in July). I now realise that his hair was quite an important topic – almost the first question Theo asked me after the diagnosis – would he lose his hair?. At that point, and in all likelihood, the answer was yes. He was scared and so was I, but as the weeks and months went past, miraculously his hair stayed put. It became thin, and we cut it to mask this, but for anyone who didn’t know him, he had what appeared to be a full head of hair. He looked normal. It was a blessing but also a curse. It meant he was able to walk around without people staring – the cancer was invisible, and that helped him. On the other hand – and it might sound strange to say it, he didn’t look ill and people thought he wasn’t sick. I was regularly asked if the treatment was over as Theo look really well (!). I found that hard – like he was some kind of imposter, and I was fabricating his poor state of health. And then it happened – so many months later. It was really upsetting for me, as I realised that finally, he looked like a cancer patient. My fit and healthy strong boy. Now a bald, chubby shadow of his former self. Still plagued with a strange appetite for salty and super spicy food. I know it’s only temporary, but it hurts to see him that way.

I also have an older daughter who despite the horrendous year has managed to do us proud. It was her GCSE year (Swiss equivalent), and she did exceptionally well – even coming top of her class. Study became her coping mechanism. Throughout all the illness, I think she has found comfort in her books and school work. She’s been through many highs and lows over the last few months, thoroughly shell-shocked by the surreal world that she was also plunged into. Hours of hearing the cries and sickness of her brother through the bedroom wall. Silently wondering why all of this was happening.

I don’t cry often, and especially not around Theo. I think it’s the only way I can cope with everything. He knows how hard it is for me, and we have shared tears on more than one occasion. When people ask, I tell them that in my experience living with Leukaemia is like being catapulted onto a very fast extreme fairground ride. You didn’t ask to get on, and you won’t be let off either. You are thrown all over the place at full speed, with absolutely no warning of which direction you are heading and no visibility. It’s full on. With no preparation. And it goes on for 3 years.

Other days I think that it’s just as well no-one can prepare you for the marathon that lies ahead because quite simply it’s inhuman. The duration is insane, and tiredness cumulated is over and above anything I’ve ever known. The illness alone is like a full-time job, and somehow life also has to continue – the family, house, work etc. Nothing else has stopped. Business as usual, except it just isn’t the same. I remember reading your blog about wandering aimlessly around the supermarket – and I can so clearly relate the feeling of being in a bubble. I find myself thinking the most ridiculous things – wondering if people can tell that I have a son with cancer. Wanting to tell random people to make the most of their children as you never know when something as precious as their health could be taken away. Trying desperately somehow to make sense of the chaos.

I know there are many days when every waking minute is spent thinking about Theo, and it is my only topic of conversation. I don’t like it, but feel unable to behave any differently. The months and months of treatment take such a toll – I am beyond tired and seem to feel almost more fragile now that in the early days. Just recently, a family from Theo’s basketball team saw me and asked after him. They obviously have no idea about Leukaemia nor the treatment, so I told them some bits and bobs, but then suddenly couldn’t contain my emotion, and cried at them – in the middle of the shop. They apologised for upsetting me – and I said it was absolutely not their fault. I just don’t recognise myself or my reactions. Life is like a dazed blur.

And like Felix – throughout all of this, Theo has still managed to keep his sense of humour. Even last week, in the midst of yet another dose of chemo he made a new nurse laugh telling her he gave everyone a mark out of 10 according to their skill administering the medication. He calls himself kiwi-head as the few fine hairs on his head make it look like the fruit. Children have hidden strength that never ceases to amaze me.

Anyway, I had better stop before this gets any longer. I just wanted to thank you for managing to write down in such an accessible way what you are experiencing. It’s really good to know that we are not alone. Theo is not really into Facebook – but I do sometimes talk to him about Felix. I have shown him a couple of photos (they have had the similar puffy steroid face and now bald head), and I tell him that being 1 year further forward in the treatment, that Felix is managing to get back to a much more “normal” life. Theo’s other great passion (apart from basketball) is photography, a hobby passed on to him from my partner, and actually one of the few things that have helped him enormously since January. If you are ever on Instagram, his page is: t.ed.h

I know he would be thrilled to have more followers!

Sorry for taking up so much of your time – I know September is a busy month. I’ve loved your blogs so far 😊

All the best to you and your family – sending big hugs all the way from Switzerland.

Katherine