Milo Apr 2021

When All We Do is still Not Enough

Milo Apr 2021

Pain is a subjective thing I guess. People talk about the most painful thing that’s ever happened to them, childbirth and broken bones normally being top of the list. However, I can’t imagine anything worse than watching your own child in pain. I spent a few days this week laid in bed with Milo because we weren’t able to get his pain under control. He was either in agony or the meds had him totally knocked out while I lay next to him worrying about what this new turn of events means.

I promised myself when he was diagnosed with this brain tumour that I would not let him go through any painful treatment just to prolong his life for a little longer if that treatment would also make his life miserable. It’s a decision many might disagree with and I respect that. I understand only too well that there’s a want, need and responsibility to give your child the very best options and chances of survival.

But I also have the experience of having gone through this kind of treatment on the sidelines twice, both times with the same heart-breaking and life changing outcome.  So, my words when I met Milo’s oncologist and Macmillan nurse for the first appointment last year were very clear: I am willing to do everything for my child to survive, but I will not prolong his life for a few weeks or months if his quality of life is seriously compromised. It is the most painful and brave words that have ever come out of my mouth and I have no way of knowing if I am right, and am I right to choose so drastically what is right for my 5-year-old son?

Of course, I believe that I am; as parents we constantly make choices for our children – it’s just that when you make actual life or death choices for your child there is no way you can ever come out of that with your heart, your mind or your beliefs intact.

It has broken me having to make these choices and having to make them alone without Ian here to talk to, but I stand by what I have said so many times: treatments for brain tumours are horrifyingly harsh on anyone, let alone small children, and had I known Oscar would die I would never have let him have some of the treatments he had to endure.

This, of course, is irrelevant as hindsight is wonderfully cruel. Ian and I had to let him have the treatments because at the time those treatments were definitely right for Oscar and should with 70-80% certainty have saved him, even with the side effects he would have had to live with. And we would have taken that, of course we would, to still have him with us and so would he.

But now is different because there is no treatment for Milo that will save him from his brain tumours, the treatments they are suggesting may, or may not, only prolong his life a little longer. I have a lot more knowledge of the genetics behind his particular illness and how limited his treatment options are, so I take the hard road and trust I am right. I give up maybe a few more weeks or months with him, which is precious time for me and his brothers, but we spend that time together at home and not split up by regular hospital visits, daily General Anaesthetics(if you have ever had one and remember how tired and sick it made you, imagine having 30 in a row), sudden frantic nights apart, spending every evening online trying to find an answer, the stress of waiting for a phone call that will bring everything crashing down again, nerves and tempers constantly frayed and all the other things that come with this life that we all live.

This may be hard for others to understand, and I find it hard to write this down knowing others may judge me for it, but I am not so sure it wouldn’t be selfish of me to do differently. I have a clear picture of what Oscar and Ian would tell me to do and I choose to trust that. The fact that I don’t have to fight his doctors for the right to not push every possible painful and invasive treatment at Milo just supports my thinking (and we have the support of the most fantastic doctors and nurses I have ever met who truly come to work to support and do what’s best for every child, saving many and somehow saving families even when losing).

Don’t get me wrong, Milo is still having treatment and it’s the reason why he is feeling so ill.  Well, it’s one of the reasons anyway – the other possible reason is that the disease is already progressing and even with his current treatment this is going faster than fast. Either way I am watching my child in pain, but at least he is in his home, with his family and not laid in a hospital bed going through agonising and traumatising treatment that we know will only end with the same outcome.

So, we lay in bed or on the sofa cuddling up and chatting when possible and who knows; he might just take a turn for the best and be out on his bike again or chasing around playing superheroes – he has done this plenty of times before. And if he doesn’t and he stays inside, well then I will have given him a more gentle time with us all together.  We watch films, talk about the fun times we’ve had and our plans for the future, playing games when he can, baking and sitting outside. I know my child best and I am doing what is best for him and for us. It is terrifying that we are not any further with treatments - although we have still come a long way since Oscar died. But for my boy we are sadly not far enough.

Marie


SCANXIETY

I never knew what scanxiety was until last year when Milo started treatment. When Oscar was diagnosed and ill, I naively (some might say optimistically) never thought we would have anything but positive results; he was having treatment and the treatment was 70-80% likely to save him (not from side effects and disabilities but at least from death) and of course I believed he was in that 70-80%. When Ian was ill we knew he would die and every scan was only a confirmation of the clinical signs of progression that was so obvious to all of us that were close to him.

With Milo it’s a bit different; every scan could go either way, we just don’t know how effective his treatment is being. And I also have in the back of my mind that we have yet to have just one scan in this family that is actually positive. There are in my mind so many options but biggest of them all of course is that the chemo isn’t working. Have the tumours decreased more, have the smaller ones gone so the surgeons may be able to remove the bigger one, have they all gone or are they just there the same as before or maybe even at this point have they grown bigger?

Well, we found out this month that the answer was; the tumours are still there, a lot smaller, but all of them still there. So chemo worked but unfortunately he has had the maximum dose of this type of chemo and can have no more. This is because having chemo isn’t just a medicine that helps, it can also bring on so much more; like he is now at higher risk of getting leukaemia after having had this chemo. He has lost hearing on both ears so has now got hearing aids.  And who knows what other delayed side effects may come. It’s a balance of risks we have had to weigh up to come to the decision to stop.

So right now, I have just been told Milo is on his way back from theatre. He has had another biopsy as we cling to hope that there may be a new marker on his tumour cells which means another treatment might work. We will have a four week wait for results where Milo continues a much needed but scary break from treatment as we see if the tumours stay stable or start growing without the treatment. If there are no markers we still throw some more chemo at him (a different type) and hope for the best.

I will now brace myself for my little man coming back after the anaesthetic  - no doubt he will want to know why I held him down as they gave him the magic sleep and I have a big telling off in waiting for that. I love it when he tells me off (not really always), it shows me he is still going strong!

Milo can be very moody and at times difficult to manage, but this could just be him being tired as chemo has ravaged his body by now and the few hours at school he manages are tiring him out. There is also the reality that we – doctors, nurses and I – are causing him trauma with all the treatment and he has to be able to let out his frustration over all these horrible things he keeps having to go through, that we put him through. It could also just be the fact that I have scanxiety and this manifests itself in me swinging from happily playing, baking and reading, to lying on the floor and telling the boys I am too tired and need to sleep. This is of course also highly conducive to the success of Seb and Lucas' homeschooling(irony intended).

My body hurts in places I didn’t think possible and most of all my mind is telling me I can no longer cope. This, I must prevent from happening. So I tell myself I am fine and it’s ok to be tired but at the back of my mind I am terrified that I am cruising slowly at the moment towards a breakdown, knowing from having seen others how quickly the cruising can turn into a 100 mph neck breaking decline.

I can’t have a breakdown now.  I simply don’t have the time and I have no support for the boys if this happens. By this I mean, I am their mother and I am in my mind the only one that can do for them what they need (the expression making a rod for your own back does spring to mind - yes the stubbornness the boys exhibit did not come from strangers), and of course also not helped by lockdown.

And while there is never a ‘good’ time to have a breakdown (and I know that even trying to contemplate when exactly I might have the time to fit one in is not the right approach), I know that the constant worry about what the next results might bring is contributing a lot to how I feel at the moment.  It’s the uncertainty that unsettles everything around us and contributes to the rollercoaster of emotions as we approach another decision making day.  And of course it isn’t just me that’s impacted by it – the boys can sense my anxiety, my family and close friends want to be there to support me, but the reality is that there is no one in the world that can make sure the results come back the way I want them to.

So I continue with my research, come to the appointments armed with questions and alternative suggestions, and try and focus only on what I can control, which right now feels like not very much.

Marie


ABOUT USING THE F WORD

Something I don’t often talk about is anger. Brain tumours are different from other cancer in many ways – for starters they are more difficult to treat, because not many medicines can cross the blood brain barrier.  They’re also different because of how late they are diagnosed due to symptoms often being misunderstood, but also because they can create personality changes - they are in the brain after all, the organ that controls our whole being.

And in our house, anger has been very near the top of the list of issues for two years now. You wouldn’t know it when we go smiling down the street but I suspect our neighbours have a good idea after hearing and seeing some rather “shall we call social services?” moments. It’s not something most people affected by brain tumours are comfortable talking about and it peels away at the pretty picture I sometimes paint of my family, but when your four year old is using the f word along with a whole host of other unsavoury language, you kind of have to face it. Yes, thank you to YouTube and older brothers for the diversity of language being overheard and memorised for future use, and thank you to brain tumours for taking away that filter that normally stops not just a kid but also a man who is normally old enough to know better.

Last summer it was something we laughed at. I mean your four year old opening the fridge and exclaiming “Fu**ing hell, there’s no food I like” was hilarious. Today, I spend a smaller proportion of the day than I used to explaining that that language is inappropriate, but only because the tumours has shrunk and there are less headaches and less stress on the brain. But I still go to bed every night worrying about how my child is speaking to me and that he hit, kicked and threw stuff at me. I no longer blame myself for his “bad upbringing” although it’s interesting that you only get to see this if you are very close to us - so for some part it must be controllable.

I have been told I am not allowed to use actual swear words when writing and I get it, but this really is a disease where you should be allowed to use the f word all the time. Watching your husband uncontrollably angry, through no fault of his own, and then heartbroken afterwards is bad.  But watching your kids watch their father like this is just beyond cruel. I make sure we remember all the good times. The anger was big at one point and sometimes we could even laugh at the funny situations - I still think of our half snapped broom and don’t know whether to laugh or cry at the memory that one brings. I threw it out pretty quickly, though so no one else had to be reminded of that particular day.

And that’s just it - I spend (and reckon I will spend countless hours over the years) bringing up all the fun stories and showing the pictures of all the fun times we had. It’s important the boys remember that their dad was the funny one, because he was. He’d have us in stitches every single night at the dinner table and the boys luckily have inherited his sense of humour. I love it when I hear their childish jokes and them laughing out loud at themselves just like Ian always did. To me it’s beautiful and a sign of their resilience and confidence in themselves. And of course all of this overshadows the anger that’s simmering there all the time. Because who wouldn’t be uncontrollably angry about the situation we’re in?  It’s so hard to push it back down and get on with life. But it’s what I do all the time, sometimes more successful than others,  and it’s what drives me to focus on the charity we set up in Oscar’s name that’s more crucial than ever.  As I look to get the charity back to ‘normal’ and raising money again in this new world, I’m driven by the knowledge that the money we put to research is needed more than ever.

Marie


FEAR TAKES THE JOY OUT OF LIFE

This is the first time I have written in over a year and a half. Ian was diagnosed with a brain tumour after a big seizure in February 2019 and I took a step back from writing about me, because it just didn’t seem right when it was him that was ill and going through so much. This is completely incorrect of course, because it wasn’t just Ian going through his illness, it was the boys and it was me too.  It was his mum and sister and their family who were constantly on stand by to drive over and help. It was my family coming over from Denmark to help and support me when they could. It was our close friends coming to sit with the boys when I couldn’t be there, and our wonderful friends in the village who brought food to us all the time.

But maybe I also couldn’t write because it was just too much. With Ian’s diagnosis came instant knowledge that he would die and fairly soon. All we could do was try our best to make more memories, make his life a little easier and ensure the boys got through ok. Our first goal was getting Seb through his GCSE’s - we (read he) did that really well. Then we moved the goal post to surviving to Christmas and just having a great summer with Seb, Lucas and Milo. The great summer we had; surviving until Christmas, yes, but really only surviving. Christmas Day was spent at the hospice with Ian in his bed next to a “festive” laid table and an attempt to bring some holiday cheer through his beloved music. Ian loved music with a passion like no one else I have ever known. He made a playlist which he was adamant should play whilst he was dying and we managed that as well (in fact we listened to it non-stop for the best part of 6 weeks). The whole 11 months from diagnosis to death we survived and managed bit by bit and with and through the boys we even managed to live a little.

There is so much I could say about the devastation of brain tumours - not only physically, but mentally. But that would be opening a box of hurt I may not be ready to. You see, I am only just again surviving. It sounds so dramatic and those who knows me well knows that drama is really not my style. I am more of a “get a grip and get on with it kind of woman”, at least I like to think so. But as I was sat in hospital looking at my 4 year old in his bed with the machines attached to him with platelets, then antibiotics, then fluids, then anti sickness drugs as his blood counts had all but hit zero (very dangerous, especially if you have an infection) you’d probably excuse my huge sense of devastation.

Because Milo has a brain tumour too; not the same as Oscar and not the same as Ian. So not only do I get to see my youngest son also go through treatment, I get to spend countless nights googling a new type of brain tumour, new treatments, support groups and so on. You couldn’t make it up could you? This time I have even more experience and that has come in handy. I kind of know where to concentrate my efforts and I know what to do when in hospital. I know when to push and when to back off. I know what I would have wished for with Oscar and what I would have changed, and I use those lessons learned. But really it’s all heart breaking.

Ian died in January. As a family we picked ourselves up and I sorted the practical stuff fairly quickly with the help of a huge support network. We had the funeral and in February we travelled home to Denmark for a much needed break and even went to Tivoli just the four of us and had great real fun. Seven days later I did a speech about how far we have come as a charity at our amazing ball and three days after that I walked into A&E with Milo after dropping Lucas off at school and told the receptionist that I needed to see a doctor as my son has a brain tumour. I wasn’t very dramatic then, rather weirdly calm and matter of fact. It’s the first time I have experienced or heard of such a quick diagnosis – the same evening I knew what the brain tumour was likely to be due to location and spread and the “look of it” on a scan. Before I fell asleep in my bed at the hospital in Leeds where we’d been rushed to, I was part of a specific Facebook group for this type of brain tumour and knew exactly what treatment the doctors would be recommending.

But I still got a shock; Milo had more than one tumour and some spread and whereas I expected the doctors to “whip it out”(brain surgery is pretty much like your average appendix removal in this house these days) they told me that they would only do this if we could get rid of the smaller ones with chemo as otherwise there was really no point…….I’ll let that sit with you for a little while.

We are now five months and eight rounds of chemo down the line and looking at Milo you’d think he was sailing through this (apart from maybe the past two days which has seen him be sick every couple of hours day and night) and surely he is fine, right? No one can look that healthy and be that energetic and yet be so ill. It’s the beauty and the horror that goes hand in hand. My boy looks, apart from loss of hair, like a healthy active boy, but the horror of it is that he has multiple brain tumours and when they were big they caused such pressure in his head that he has some extensive permanent loss of vision, full loss of hearing in one ear, the steroid treatment made his body balloon to what looked like double his size and the chemo has now ensured all that weight has been lost. Nothing makes you lose your appetite more than chucking your food up two minutes after enjoying it. So much food will now never be eaten again in this house. (this does not apply to me, I eat my way through this like I have for the past 7 years now).

I wonder if I will ever become immune to the pain around me, but of course you don’t. It is still heart breaking, no matter how brave Milo is, to see him throw up, to have to hold him down as they put the dreaded wiggly line in (something he let them do the first five or six times until he heard other kids scream out in fear of the impressively big needle at clinic and decided this was scary stuff), or when he sits and makes little tasting sounds as they push the medicine through his central line figuring out if he needs water or if this one is just a flush, when he desperately asks if they can give him magic sleep medicine so he doesn’t have to feel anything or the worst; when the other night he turned to me and said “I don’t want to die mum”. I can promise nothing and help little because although he impressively says “it’s my body and you can’t do anything to it I don’t want” we both knows that really what needs to be done will be done.

And then we have the beautiful moments when every night we tell each other how much we love each other and I mean who can argue that being loved all the way to Scotland and back can be beaten by anything?  Or when he holds my head in his little hands and tells me I am the softest mum in the world and he wants to kiss me forever. I tell him he is the bravest boy I know but that doesn’t cut it because really he is the bravest person I know. His brother was the same and it amazes me that Ian and I have been lucky enough to have four such strong boys in our lives. Seb and Lucas have their own battles and these are constantly pushed aside.  I live with constant guilt that I don’t have another 10-12 hours in every day so I could do some normal things with them all. Things other people take for granted like taking your kid out to get school shoes when they start secondary school for the first time, or be the one that teaches your child how to drive, or maybe even just take them to their football and actually stay and watch. None of these are easily achieved by me and people can say “It’s fine you can do that later” or “they understand this is the way it is now”….it’s been like this for Lucas pretty much since he was one and certainly for Seb the past seven years. So that guilt isn’t something I will get rid of soon and it’s something I ponder will have an effect on them as they become adults.

Losing your brother and then your father through horrible illness where you watch them suffer, and then watch your youngest brother again go through similar can’t really be conducive to an easy life. My biggest fear is that they lose the joy in life. If they start fearing for their own lives (which kind of would be understandable) they will lose joy, and if they start feeling guilty they will lose joy. So I guess my advice to them is do as I say not as I do.

Marie


Walks to the park

Often when I walk towards the park from our home I am reminded of Oscar’s last trip to the park. He was in a wheelchair and he had relapsed whilst still on treatment. This was unexpected and we were supposed to be back home in Denmark on holiday with my family. Oscar was a proud boy and he didn’t like anyone seeing him bald from the chemo and radiotherapy and he certainly didn’t like anyone seeing him unable to walk. But he asked to go to the park as he loved the fresh air and was happy that day with going in a wheelchair – simply accepting that there was no other way. He stopped me, though, from pushing him around during a game of croquet and stubbornly walked around, the pain and tiredness overcoming him. And in true Oscar style, he was unstoppable still. It is to this day that his stubbornness, which so many times frustrated me, is what I remember with such admiration and fondness. He would have moved mountains had he still been here.
On these walks to the park I pass a tree where that day Oscar suddenly asked me to stop and said “I am sorry Mor”. I didn’t know what he was apologising for but he explained that it was his fault we weren’t going to Denmark and he felt bad about it. This floored me and I can still remember wanting to burst into tears but keeping it together and explaining to him that it certainly wasn’t his fault – it was the stupid cancer which he could do nothing about. I also told him that Denmark would be there forever and we would go on the boat again that summer so he could be with family and swim at his beloved beach by my parents – one of the worst lies I have ever had to tell, only topped by letting him choose and buy new Wayne Rooney football boots two weeks before he died. We made sure he had the boots with him along with his Man Utd kit when we said our final goodbye.
Oscar was the kind of boy that would make you feel as Lola Baidel, a Norwegian poet, so aptly puts it in a poem;

I want to
rip my heart out
Put it in your hands
And say

Can you hold this
for a moment

Oscar has forever got a piece of my heart with him and I don’t want it back until we meet again


SLIDING DOORS

I often think of the movie Sliding Doors. Only for me it isn’t a moment here or there that can change the path of my life, it is an actual feeling of living two different lives simultaneously. There is the real life with very real actions and conversations and then there is the life in my head which runs alongside; the one where I am constantly aware of what Oscar would be doing at this point or I dream of what he would be doing, saying, feeling - this includes great moments and more challenging moments. It feels good and important to keep Oscar alive in a real way because he was so much more than just a boy with cancer. He was a sports hero to his friends (I can say this because they told me so), he was tenacious and a perfectionist who wanted to do well in everything he did, and he was also challenging in temper - mainly for me and never with his peers. Oscar would find a convincing and charming way to argue that black is white and be very strong in his view points. All attributes that makes for a complex, loving and loved boy. Oscar had soul and he was always going to make his mark on the world.
So in my Sliding Doors the doors just keep sliding and once in a while catching me and I wonder if this will be forever - well, my forever. Will I go to bed every night wondering if the next morning I have to wake up and tell myself to get it together or tell myself how lucky I am to have had him in my life. Or will I wake up and jump out of bed and get on with the morning as any normal family do - I never know which.
I want to talk a little about Oscar’s brothers. Seb and Lucas were everything to Oscar and he was to them. We are lucky that they are still comfortable talking about Oscar and this shouldn’t be taken for granted. If we as adults don’t understand death, how are they as children supposed to understand it. And in our family, it’s not just death we have to deal with but the fact that Oscar suffered before he died. Part of how we deal with it is by turning our emotions into actions and trying to help so other children may one day suffer less when met with the same diagnosis as Oscar. Oscar’s brothers are a huge part of this and Seb has even stood up and done talks to his school friends and teachers – all 1400 of them - and Lucas will come out and talk to the public when we have a stand at events and he is very matter of fact when he tells people that we raise money for his dead brother so others don’t die.
I look at my boys and the fear for me will always be that one of them could get cancer too. Roughly one child in 285 develop cancer before the age of 20. I don’t see those odds as rare and, as proven by my family, someone has to be the one. I don’t know if they have the same fear or if they fear losing me and their dad, especially after Ian was ill last year, but it’s probably a pretty good guess to say they do. I guess the best thing we can do is equip them with the tools to be able to handle whatever comes their way and show them that they have support around them. And I think we do that by also showing our support and how much we want to do for others.
Milo has started mentioning Oscar now as well. It’s difficult to know what a 3 year old thinks, and we don’t talk about Oscar to him all the time, but he has obviously got a good sense that he has a brother he never got to meet. There is at least one picture of Oscar in every room of the house and Milo knows that this is his brother, that he was great fun and loved playing with his brothers, that he was happy and loved being active and that he would have loved Milo as much as he did Seb and Lucas, had he been lucky enough to meet him in this life. The other day Milo said “Oscar and I match, don’t we?” – he was talking about the colour of his and Oscar’s scooters - but it did make me think that yes they do match. All my boys match. One way or another they are connected and matching each other – four brothers, four souls, four individuals, individual yet intertwined forever.


Oscar 18 Feb 2013

MAKING A DIFFERENCE

We’ve had so many proud moments since we set up OSCAR’s Paediatric Brain Tumour Charity, but today is a very special one as we are able to share news of the impact of everyone’s hard work and efforts to make a difference to the fight against paediatric brain tumours.

Alongside the Brain Tumour Charity, we have funded a trial that provides the ability to give children treatment that is tailored specifically to their tumour. This is a huge step forward in the management of brain tumours as it means that children with certain types of medulloblastoma can receive less toxic chemotherapy and a lower dose of radiotherapy without reducing their chance of survival. The results of this trial could spare many young patients from some of the lifelong health problems caused by high doses of chemotherapy, and it’s making an impact already.

When Oscar died, we made the decision to set up a charity in his name in the hope that we could have an influence on other children not going through what he did. It wasn’t a decision we took lightly and we gave it a lot of consideration. We had raised a huge sum of money from our friends, family and extended network when we thought we would be able to send Oscar to America for life saving treatment, and we wanted this money to be used to change how children with brain tumours are treated in the future - and ultimately save lives . I’ve met many other parents who have also lost a child to a brain tumour and it seems that many of them consider going down this route too. The Brain Tumour Charity offers lots of different ways that families can remember their loved ones. We considered going down the route of setting up supporter group with The Brain Tumour Charity in Oscar’s name - they have over 250 of these groups, which all raise funds and awareness to change the outcomes for those affected by brain tumours both now and in the future.

But in the end we decided to set up our own charity for Oscar because we wanted to focus on paediatric tumours. It’s hard work at times, often very emotional, but always very rewarding. We’ve been going for almost four years and have raised over £300k. We’ve grown from doing a couple of small local events in York to running larger scale events ourselves, and now people we’ve never met have been touched by Oscar’s story and raise money in his name. We have people who run marathons, climb mountains, swim across lakes and cycle across countries. There’s children who push themselves further than they (and their parents) ever thought possible, and parents who take time out of their busy lives to help their children take part in activities to raise money that will fund critical research into brain tumours. And it’s so wonderful to be able to say that we are really making a difference and changing lives.

Thank you to everyone who has ever supported us. Oscar would be so proud to see what we’ve all done together.

 

We are proud to be mentioned in the article below

https://www.independent.co.uk/news/health/brain-tumour-children-medulloblastoma-chemotherapy-radiotherapy-survival-testing-cancer-nhs-a8538136.html


oscar hospital

WHEN HEARTBREAK STOPS BEING ROMANTIC

I cried the other day for a solid 20 minutes. That hasn’t happened in a long time. And it was with full on sound and facial dramatics. And it was in my car at broad daylight. There is a good reason for this; I had to go to a meeting at the hospice we took Oscar to after he died. We were “lucky” that we were able to give Oscar a peaceful death at home. But afterwards we couldn’t face having him at home until the funeral. This for a multitude of reasons, one of them being that we would have to install coolers in his room (yep, death is not as romantic as you see on film), another being that the kids and us simply needed a “time-out” from the world. So, Ian and I decided we would drive him to the hospice ourselves. Ian drove, and I lay in the back of the car with our dead son holding him and making sure he was safe through the journey. We didn’t really say much on this journey, all I remember is holding Oscar and looking out the window as everything outside passed us by, feeling thankful that no one could see in and wondering what they would think they were seeing if they could. I imagine you would see a mum holding a sick child with dad driving as we had done so many other times to and from hospital – because it really is unimaginable that there we were with the unresponsive body of our 9-year-old child.

I wonder what people today saw when they saw me; a woman crying her eyes out over a heartbreak perhaps? Well, that would be true. But not your usual romantic heartbreak story because that never has and never will apply to me. Not once have I cried over a man – felt anger sometimes, betrayal, sadness but my heart breaking? No. I know that now.

The first time my heart broke was when Oscar was going through his tumour resection. I lay in a hospital bed next to Ian as the Operation took 11hrs and for the first time in my life I admitted that my heart had broken, not only had my heart broken, my whole soul and being broke with it. And after that day it just kept breaking a little bit more. It broke a little every time I saw Oscar in pain, with every new horrible experience he had to deal with, every bit of joy he missed out on and with every physical or emotional pain he had to go through; I just kept breaking. It is a pain that I cannot run from or fix and so I must walk with it. And I do. I keep myself busy working, sorting the house, the kids and seeing friends. But put me in that same car on the last journey I took my son on and I admit complete defeat and I let the pain be unbearable…for a time.

I had 8 normal fantastic years with Oscar full of joy. These years, along with the years with his brothers, were the years my heart flourished untainted by pain, my soul came to rest in the values of family and pain was something connected mostly to a physical aspect. That my child at 8-9 years old should feel a year of such pain, losing the innocence that is such a beautiful privilege of being a kid and never had the chance to recover from it all and find that the world could be ok again with our love - that is a heartbreak you never recover from.


THE ONLY WEALTH WE HAVE IS OUR RELATIONSHIPS

Oscar’s funeral was exactly 4 years ago on Sunday 13th May – it is also the day we attempt to take 65 children and their families up Mount Snowdon for the charity. I will never understand that Oscar is dead. And I will be forever grateful for the people we have around us supporting us. It is humbling that so many people, and poignantly so many kids, want to be there for us, for Oscar and for other children with brain tumours. In a world where sometimes we lose hope, this weekend restores all my faith in human compassion and empathy and in the saying “The smallest gestures can produce results that will change the world”.

Four years and it still feels like only this morning I was cuddling my boy. I can still physically feel what it feels like to hold him – I know the shape of his strong leg muscles, what his skin feels like on his arms, the touch on my cheek when he would give me one of his rare “butterfly kisses” and it’s a blessing that I can still feel all this. And it is probably incomprehensible for others, but it is true and real for me. And it is all I have left along with memories.

It’s sometimes a strange way that we try to understand life and death; we give the things that happen to us meaning or at least we try to. We come up short, though, when really bad things happen. There is no justification for your child getting a brain tumour and dying. We didn’t need to learn to appreciate our children and our family – they always came first for us, so why? Oscar was such a lovely, kind, funny and strong boy and he certainly did nothing to warrant having to go through so much pain, so why?

Maybe we just don’t have to understand and give it meaning and all we can do is accept. Life is really rather short for most of us and all we can do is try and make it good. I don’t think any of the things we have around us matter much. I know for some it does and I will never understand these people’s way of thinking, but peace be with them; if they are happy and not hurting anyone who am I to judge if the latest big car or tv makes a difference in their life. To me, though, the only real pain I am and will ever feel is missing the people I love and so, the only real joy I will ever feel is from the people I am lucky enough to surround myself with.

So yes, I cuddle my children even more, I memorise the looks on their faces in all sorts of situations and I teach them to be kind, loyal and loving so they, too, will know the joy of great relationships. It’s not just partners that makes us feel happy inside – it’s friends and family, too. I have lots of people around me that when I think of them I can feel that joy in my tummy and laugh out loud about some antics from ages ago still.

And I think of Oscar one day when we walked in to school during his period of treatment and he turned around to me by the car and smiled that biggest smile of his and his whole body did a little jump as he told me he couldn’t wait to go in and see his friends because they made him so happy inside and he asked me if that was odd. Odd Oscar? It is blooming fantastic that you were so lucky to have such great friends and cool enough to know it.

It is also only recently that Oscar’s friends mentioned that they felt we needed somewhere in our home village, preferably the school where he was so happy, whereby he would be forever remembered. Oscar was always someone who was going to inspire people. His tennis coach mentioned at his funeral that Oscar taught him more about life than he could ever teach him about tennis. And he was right; I have never even once known Oscar to give up on anything and whenever I feel myself falter or hesitate a little I think of him and I think; “Because of you I won’t give up!” – what a legacy to have.

We didn’t make it to the top of Mount Snowdon last year due to nature blowing us off the mountain, but in true Oscar style we won’t give up. So 4 years after all your friends and family said their last goodbye to you, we walk with you in our hearts, Oscar Hughes, our beautiful forever 9 year old boy.

 


LOSING MY BREATH AND NEVER QUITE CATCHING IT AGAIN

My grandmother died this Christmas. She had a peaceful death and had just been, as she had always been, surrounded by love from family and friends. This was the “right way” of things – we are born, we live, love, perhaps create more family, live and love some more and then we die. We are missed by the people we leave behind but with a long life behind us this feels the natural order of things for all and the pain is a measure of love and although it overwhelms us and however difficult, it does not destroy us; We know somewhere along the way that this is the way it is supposed to be and that we can bear this pain.

The pain I feel daily is getting harder to bear for me. It is affecting my body and my mind. I have only just accepted this. I have been playing with the idea of having reflexology for months now but I know from before how powerful it can be for me to let go of my shield and so I kept putting it off.

Over the past year I have had to stay a little stronger than usual – Ian has been seriously ill to the point where I was probably going to lose him. And it wasn’t just me that was going to lose him, it was the children; they have already lost so much – their carefree childhood, their brother and undeniably a bit of themselves and parts of their mother and father. There is no pretending we are the same as we were before. Ian and I have both become a little more hot tempered – my theory is that it comes from trying so hard to be sane and keep control that when things go wrong the ripple effects feels like our world is falling apart again and thus we react to this, taking it out on the mundane everyday life. How ridiculous; getting cross over a bit of clothes not put away, a tit for tat over who cleans up more, who looks after the house, the kids etc etc. I mean, we should know better, right? But fact is the reaction to some of these ridiculously irrelevant things are bigger than need be because our energy levels are low – our balance is so easily tipped as we walk this thin line over a valley of emotions. We don’t argue really, we just point out frustrations and then move on, but we do it angrily. And it is confusing to others that we can get so angry and yet show no emotion afterwards, but it’s because it’s just an outlet for a few moments about something that we actually have no interest in, the outlet is the important therapy for us. As you can imagine we are great fun to be around!

Back to my reflexology; as expected after a year of fighting for Ian and watching Ian fighting for life and for the pleasure of staying with us, my body is shot. I hardly made it on the couch before tears started streaming out. My lovely reflexologist only had to say a few kind words to me and there I was – therapy and foot massage in one go! I don’t really cry with friends and I don’t talk about Oscar in any other way than in connection with the charity or through fond memories so this was a much needed release.

To be fair I have had to shield up over the past year to get through and I made a silent agreement with myself & Oscar when Ian went in for his major operation that it was ok if I concentrated a bit on Ian and the boys and maybe pushed Oscar to the back of my mind for a bit – this is probably also why I haven’t written a blog for a long time. Writing about how I still miss Oscar and the effect on my life when my life is also fully consumed with trying to be there for Ian and the boys through more devastation has just been impossible. I find that I am not superwoman……you may laugh at this but I kind of thought I was.

I thought I was rocking this doing the charity, looking after my husband and kids, honouring Oscar, working –I am really not rocking much these days. And I am constantly feeling guilty; I mean we all know that we have to look after ourselves to be able to look after others, but who in their right mind wouldn’t feel guilty doing that whilst watching someone they love struggle to just walk up the stairs? You kind of don’t go “But I need….”  And yet I have started that, so now I get to feel guilty for doing stuff for myself and frustrated when I can’t and it’s all me – Ian doesn’t even say a word. In fact he thinks I should go skiing, running and do stuff for myself.  And I will, it is part kind of a woman thing and part born out of my circumstances, so I just have to work through that – it’s just that circumstances do seem to keep hitting me.

Well, I am starting with taking Ian away to see the Northern Lights – something he & I have always dreamed of. And I get to have time alone with him, something I crave. The boys get to spend time with their grandparents which they love so we are all good on that one. After that, I plan to sign up to do Vasaloppet cross country skiing 90km in 2019 – so I have to look after my body and mind.

I imagine Oscar watching me and all I really want is for him and his brothers to be proud and at peace with who I am and to know that they always have been and always will be safe & loved with me and their dad – that I know, I can only deliver if I and both of us look after ourselves.