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
