IF YOU GET TIRED, LEARN TO REST NOT TO QUIT
The boys and I have settled really well in Copenhagen but a tiredness has also descended on me. I struggle with having a seemingly normal life again. Seb works in the centre of Copenhagen, Lucas goes to school and I go to work every day – this is a normal life, yet constantly I am waiting for something to happen and it is driving me crazy. I make plans for the future but at the back of my mind is that little nagging feeling that it's too optimistic. I wake at night worrying about what will happen with the boys if something happens to me. I go through different scenarios, and because of what has happened to our family I always come back to the scenario where I, too, get a brain tumour, and it upsets me mostly for the boys as I envisage them having to go through all this again. And it isn’t that farfetched because we are already a family of novelty in what has happened to us so why not more? It makes me tired and upset and I lose concentration for a while. I definitely need to rest more when this is occuring.
This has happened to me before, and after Oscar’s death it was the charity work that would pick me up. It’s a legacy to Oscar and now Ian and Milo too, but more importantly it is the light of progress in what is an otherwise pretty grim outlook. The charity has already part-funded some amazing research that has been so successful it has led to biomarker testing to personalise NHS treatment, and we are funding a tissue bank making it possible to save brain tumour tissue for vital research. Knowing that we are making a difference with the work we are doing and with the money raised from so many fantastic supporters is part of how I keep being able to function.
The boys and I are so proud of the charity. It’s grown so much that we’ve reached a point where the trustees and I can no longer manage the workload and the opportunities that come up. We’ve put in thousands of hours of work and can finally see fulfilment of the vision we had for the charity when we sat around a kitchen table in the early days deciding how to go forward. If I’m being honest though, sometimes the charity overwhelms me. I need it to continue and not only for personal reasons, but also because we need to have better treatments for our beautiful children so they can continue to live full lives. I’ve spent so much time trying to decide if I should leave my job and focus on this full time, but in the end I realised that I need to have things in my life that are not about brain tumours.
I’m so proud that the charity has progressed so much that we’re now in a position to hire a full time Charity Manager, and I am even more proud to share that our first hire is also one of our biggest supporters, Phil Martinez. Phil was a teacher at the boys’ primary school so he saw first-hand what we all went through (as a family but also as a community) when Oscar died. He was involved with so many of our early fundraising events alongside Ian, who would be so overwhelmed to know that Phil has stepped away from 20+ years of teaching to take over running the charity. Like me, Phil has had personal experience with brain tumours - his mum died of a brain tumour so his passion for better treatments are perhaps only challenged by my own.
This new step for the charity means that I get some much needed rest and support whilst the charity continues to go from strength to strength as we come out of the toughest years certainly in my family’s life but also so many others. For me on a personal level it’s a little scary letting go somewhat and entrust the daily runnings of what has probably become my life’s work (I do love the drama of saying that) to someone else, but then again in real terms trustees and volunteers have kept everything running smoothly all the times I have been unable to over the past few years. So I choose to look at this as the biggest step forward I have taken in a very long time.
Never did I dare truly believe that we would reach this point for the charity – Oscar and Milo would of course both say “told you so” to me. And Ian, I believe, would right now look at me with such love and pride. We were a team and without him things are tougher than I can ever explain so to be able to see the work we started together keep growing and doing so well is a real win. The charity, like our boys, is thriving and for that I am eternally proud and grateful.
FEELING LUCKY AT CHRISTMAS
It’s come round to Christmas already and this is our first since Milo died. I miss Milo every single day and if I thought I had got used to missing Oscar, so therefore I would quickly find a way also of living without Milo, then I must admit I was terribly wrong. And that’s the thing with the children you have, they are all so different so of course it makes sense that you miss them in different ways and also in different situations. I actually struggle a little at the moment with sharing the grief between the two of them – yes I am well aware it’s ridiculous as it’s not like they are here to feel the difference – which makes the whole thing even harder.
Our lives are now split up into sections: before Oscar got sick, before Oscar died, before Ian got sick, before Ian died, before Milo got sick and before and after Milo died. Writing this makes me feel so sorry for Sebastian and Lucas. What a burden to carry from young adults all the way through life, it seems overwhelming beyond reason. Hearing Lucas respond to me when I ask him a normal question regarding some school issues with “Mum, my brothers and dad have died I think I know how to pretend to be happy when I am sad all the time” hurts me so much.
But knowing he hurts more is almost crushing me. Here I am thinking I am doing really well building a somewhat new life for the boys and I, yet it’s that old picture of the duck looking all calm above water but underneath the legs are spinning around at top speed that comes to mind. My boys, and to be fair me as well, are looking good on the outside, yet underneath the surface we are fighting to keep afloat. Dramatic, I know. I feel a little dramatic at the moment. My dad has been taken to hospital with a big bleed on the brain so you’ll forgive me for feeling like the world is crashing around us again. This was going to be our first calm Christmas for about 8 years where we could breathe a little, reflect a little and just feel some love. It would also in a strange way be nice to be able to just sit down and miss Milo, Oscar and Ian.
But despite all this, we are home with my family and for that I am thankful. I have a new great job which challenges me and more importantly I have fantastic colleagues who I really enjoy being around. I was worried about starting work and telling people my story. It is incredibly difficult to know if you should or should not say anything and ultimately it is my decision how to approach this. The Danes are nothing if not great at minding their own business. I was warned before coming back home that Danes (and here I generalise greatly) don’t like show of emotions unless of course you are close friends. I don’t think this is necessarily odd for most people to feel a little uncomfortable with strong emotions on display. I have proceeded with caution but of course found situations where it’s felt natural to mention what has happened and other times maybe even been too comfortable just blurting it out, of course ensuring people have absolutely no idea what to say to me. I have also been positively surprised – the Danes are not emotionally cold to strangers as I had been led to believe but rather listening and responding with openness. Yes I am aware I am myself Danish, but other countries perception of you and your fellow people is often not how we perceive ourselves.
This Christmas month has been spent between visiting my dad in hospital, my work and the children trying to make it as lovely as possible – after all I had promised the boys a lovely normal Christmas. I saw this quote on Facebook and oh how it fits: “When your day is going too well and you don’t trust it and some shit finally goes down. Ah, there it is The Fuckening”.
I’m in the frame of mind where I wonder who could think their life is so bad compared to mine and think about how they would cope if they maybe swapped with my life for a day. Wow, there it is again, the self pity. If you could see me, you would see that I am rolling eyes at myself. I honestly don’t really walk around feeling sorry for myself (although I will never stop feeling bad for the boys) but I do catch myself every so often looking at other families and thinking that I hope they truly know just how lucky they are. But then again what do I know of someone else’s sorrows?
Just sometimes I watch myself in a room full of people and you wouldn’t have a clue that perhaps in that moment I am not the happy smiling person I portray, although in all fairness most times I actually am. I don’t think I can explain this very well but I think I perhaps make more of an effort to enjoy every moment I am in in a very conscious way and that makes it easier to feel happiness. It just doesn’t really take a lot for me to be happy these days. There is no searching for more all the time because I already know what the less is. So for me moments with the boys just watching a Christmas movie or dancing around to Ian’s old vinyls and singing loudly, or an evening with old friends drinking too much; well that’s enough to keep me going. It isn’t the big unobtainable dreamy things that makes me feel happy and alive, it’s all the normal things I do with people who I genuinely think are brilliant to be around. And I feel so privileged to have so many people who, it would seem, also enjoy being around me. How lucky am I!
Merry Christmas everyone
Marie
REGRET IS SCARIER THAN CHANGE
I can’t sleep. It is rare that I can’t sleep, even with all the worries of illness throughout time, I have always been a fairly good sleeper but tonight I have tossed and turned. The boys and I have moved and although I know this is the right decision, it also became a rushed thing and a big move like ours shouldn’t have been rushed. It wasn’t really rushed if you look at it timewise from idea to decision to execution, but it was rushed in the sense of timing after Milo’s death. It feels like we never had a chance to breathe after Ian died and before Milo was diagnosed, and then again after Milo died before we went ahead and moved - not just house but country. We have moved back to Denmark where I am originally from and where we have a huge family and support network as well. Ian and I did this back in 2007 and he often remarked how he regretted not staying longer back then and giving it a proper chance, but circumstances, as often happen, made us go back to England- at least I know he would approve of our move.
That knowledge doesn’t make it any easier that this felt rushed. Milo died whilst the plans were all in motion - it was supposed to be an exciting move for all four of us but when the brain tumour cells took hold and went crazy they did it fast and furious. I had so looked forward to Milo enjoying time here with my family around him. It’s difficult to explain why we went ahead with the move so quickly after Milo’s death but the plans were there and the house had sold. And we would have had to move house regardless as our house in York wasn’t the type of house I could financially support my family in alone in the long-term.
I feel perhaps also a little bruised and battered from my years in the UK. I guess emotionally in a way I had already moved as well - that sounds stupid but it had been planned for so long that I would have had to rewire my mind completely into thinking it would be best to stay, in order to be able to stay, and that somehow just didn’t work - most likely because the move is the right and the sound decision for our family. When we started thinking about moving back to Denmark it wasn’t an easy choice; the boys have lived their lives somewhat in both countries but had of course mostly built up their networks in the UK and Ian and I had built up a huge network around us as well.
Ian and I always lived our lives with a conscious mindset of being happy and often through new experiences. For many years it was difficult for us to travel as much as we liked, and illness put a stop to many career choices that may otherwise have been – for both of us. I think, in order for me to create a life for both myself and the boys that keeps honouring how Ian and I dreamed our family life would be, it’s important that we stay brave. I don’t want to sit at home for years wondering if life would have been a little different had I been brave enough to make a big change. I want the boys to keep being brave in their choices and see that they always have choices. We might get it wrong sometimes but at least we keep trying.
Lucas has been accepted to a good school here in Copenhagen and it’s an important new start for him. It’s an important new start for me as well. Right now I am sitting still a lot and just thinking and resting - my body is tired and my mind has been working for so long in overdrive constantly concentrating on hospitals, illness, next steps, research and the boys’ mental health that I am trying to train it to be quiet. But I can’t let go completely yet. The boys still need me and I still need to somehow make sense of everything that has happened. I know it will never make sense. Nature is nature and we work with it as best we can.
If I can get my boys through this new start then I can start being excited about it as well, I think. I ask a lot of them, Ian and I always have done. Lucas has to learn Danish properly including writing and reading - he has been very keen on the move with that zest for life only a young boy can astonish you with, but I wonder if that stays once the normality of school life sets in again. Lucas keeps me forever on my toes with his sharp mind and humour, and it is wonderful to have time to appreciate that again.
Seb has a whole new life ahead of him. He finished A-levels, expectedly by those who know him and unexpectedly by anyone who knows only our story of sickness and death, by powering through his exams. He is such a beautiful young man (he won’t thank me for writing that but he really is); he has unfairly helped me too much in the past years with everything and I fear the time he now has on his hands to just be like all his friends is time he won’t know what to do with. Sitting still for too long never helped anyone but sitting still for a little is also a skill that we as people need to get through life and to enjoy life. This summer, after hopefully partying lots with his friends and celebrating all their efforts, he has decided to take a Gap year and come back to Denmark with us and I am so happy about this. One thing is (selfishly) I can’t imagine him not living with us but for him this is such an important time to have.
I know Ian would be so proud of him as he often said how he wished he had done just that instead of rushing into the grind of school to university to work - also one of the reasons we travelled as much as we could. Uni is going nowhere and will wait for him and life is out there to be experienced in so many ways. Hopefully he finds a job and some friends to have fun with for the year and maybe even travels some. It’s a brave decision but the right one for him. To take some time before embarking on more school hopefully means he finds out he has chosen right for Uni and will start on a degree he knows he will enjoy.
So it’s a time of huge change and upheaval and the boys and I have a lot to look forward to, navigating how we do this and allow ourselves to do this is the very hard part. For every moment I feel a little excited about for example the prospect of a new job that challenges me, I feel guilt. When I look forward to playing in the ocean and laying on the beach, I feel guilt and even when I look at the boys and feel pride, I feel guilt. It’s guilt for being here and getting to see them grow up, it’s guilt for not taking Oscar and Milo to the beach and it’s guilt for wanting to try and live my life somewhat happy again. And I feel sadness and anger. Sadness because even on my best days I am just also so very sad. Anger that I have to do all this alone. I am not angry at anyone, I am just angry. I imagine it must be hard for people to understand but I am feeling guilty, angry, sad, excited, proud and happy all at once. And all this is going to take some time to navigate, not just for me but for my boys, too.
I am so thankful we have so many friends and family that support us and the choices we have made. It hasn’t been easy for family and friends in England that we have moved, but they know how important this next year is for the three of us to have together in a new place so we can form a way forward and find some peace and happiness again. And the world is of course really not that big, both the UK and Denmark will always be our home.
Marie
When All We Do is still Not Enough
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
JUDITH SWIMS WINDERMERE - THE RETURN
JUDITH DOES IT AGAIN
Two years ago, Judith Kirk took on her biggest challenge – swimming 10.5 miles across Lake Windermere. This year she’s doing it all again, but this time she’s not stopping in Ambleside. In a mammoth 21 mile, 14 hour challenge, Judith is swimming across Windermere and straight back again.
In swimming terms this is an extreme endurance event in variable conditions and water temperatures. Her training is relentless, repetitive, tiring and extremely time consuming, as she trains twice a day, 6 days a week, with gym sessions twice a week too. Since January she’s swum about 700km or 435 miles or 28,000 lengths of the swimming pool.
Judith’s justgiving page is here, please sponsor her on her epic challenge:
https://www.justgiving.com/fundraising/JudithKirk
GARY CLIMBS KILIMANJARO
GARY CLIMBS KILIMANJARO
Last September, Gary Hudson took on a challenge of epic proportions and undertook aweek-long African adventure which took him through four different climates in the process. Kilimanjaro is located in the National Park of Tanzania and stands at a majestic 5,895 metres high.
Gary said of his challenge: ‘It’s said that there’s a time in life when there’s more to look back on than perhaps to look forward to. Creeping above the 60 mark I may well have reached that point but don’t necessarily agree with its sentiments. I believe there’s still plenty of ambition for us grey heads to consider. So when the opportunity to climb Kilimanjaro was presented it proved the point that wisdom doesn’t always prevail and the challenge was accepted.’
Gary and his wife Vicky ran two amazing fundraising events within their local community which raised over £7,000 and then donations via JustGiving topped the overall amount over £11,000. We’re so grateful that Gary chose to do this challenge for OSCAR’s. The money raised will go towards an exciting new project that we hope will benefit children with brain tumours across the Yorkshire region.
York Trusted Professionals
York Trusted Professionals
In 2018/19 OSCAR’s PBTC was chosen as the York Trusted Professionals (YTP) Charity of the Year. This partnership saw the networking group of about 20 business raise over £10.5K for our charity.
York Trusted Professionals is a business referral network of like-minded business owners who meet every two weeks. The business owners made a commitment at the beginning of the partnership to raise between £5-10K and decided to push themselves through different events. We had a brilliant Quiz night with lots of fun, a raffle, 12 of the members ran the Yorkshire Marathon Relay in October and the “icing on the cake” was a fabulous Christmas party which in itself raised over £8K.
OSCAR’s Charity would like to thank all the members who donated their time, prizes and skills to raise money for us.
