Having a brother or sister with LFS

By Louis Pantziarka

When I was twelve years old my older brother, George, died of cancer. It sounds obvious that something like that would change you and yet at the time you don’t see it. Life goes on around you, the world doesn’t stop turning.

Thankfully not everyone that gets cancer, whether they suffer from LFS or not, will be beaten by it. But this awful disease does leave its mark on the lives of those who suffer from it and those around them. Having a sibling with LFS is not an easy thing to deal with. There is no right or wrong way of working through the emotions. We all have different coping mechanisms, different ways of surviving. All I’m going to attempt to do here is to assure you that you’re not alone, that there are ways to make this easier on yourself and that there is light at the end of the tunnel.

I’ll start with living with someone with LFS. Obviously the person suffering is the one who will get the most attention – and rightly so. However that doesn’t mean that those around the sufferer aren’t going through it. LFS takes its toll on everyone it touches, whether directly or indirectly. Trying to support a sibling through countless hospital appointments, treatments, operations and recovery periods is no mean feat. Having to do this as a child is next to impossible. Whatever your situation, all you can do is try and be there for them, but as a sibling it’s a different approach to as a parent or other family member.

I believe that the best thing you can possibly do for your sibling with LFS is take their mind off it. Be their friend. Be the person they joke with, they play Xbox with and they watch Friends with. Do the serious stuff too and have the difficult talks, but make sure they know that when they’re having their worst days they can turn to you to take their mind off stuff. It isn’t easy, but if your siblings are anything like mine, then you owe it to them to try.

Households living with LFS are always hectic. There always seems to be people coming or going, whether its family members, nurses or doctors. As a child especially, but I imagine the same applies to anyone, it’s easy to shut yourself away and try to hide from all the chaos. When George was at his worst he was bed-bound, shut in a dark, cold room and just generally not in a great way. We were told that he only had a couple of weeks left – it was an incredibly difficult time. All the focus was on him and I found it easier to stay in my room than have to deal with what was happening. I would go long periods without seeing him and spend all day watching TV to take my mind off things. Eventually my mum starting coming up with excuses for me to go into his room and I will forever be grateful for that.

George recovered from that bad spell in the end and things went back to normal for a while, or as normal as it could be. Looking back I sometimes feel guilty over how I acted, but I’ve since come to terms with it. Child or adult, we’re human beings. We can’t be expected to deal with everything perfectly and sometimes we need to be selfish to survive. Try not to shut yourself away completely, but don’t feel bad for needing time to yourself. Sometimes you have to focus on helping yourself before you can help anyone else.

As we know LFS is a hereditary condition. For me this fact made it hard to stand by and watch while my brother went through it. I felt guilty that I got to be the ‘healthy’ one while he had to go through hell. It wasn’t fair. I suppose the dynamic would be different depending on whether or not your sibling is older or younger than you, but personally the whole ordeal sometimes felt like the ultimate sacrifice. George always looked out for me, always looked after me in that big brother way and here he was taking the bullet while I got on with my life. I felt like I had grown up with him looking out for me and then in his hour of need I was helpless.

If you’re going through something similar, don’t worry. Everything you’re feeling is totally natural – countless numbers of people have gone through this before you. Eventually that guilt did go away for me. Every now and then I’ll be reminded of something George did for me and it will rear its ugly head, but for the most part I’ve left that part of my life behind. I’m afraid there isn’t a great deal of practical advice I can give for this part. As in any grieving process, time is the best healer. One day you’ll realise that you don’t feel it as strongly as you used to. It won’t happen overnight, but it will happen.

This last bit is specifically for those people who have lost a sibling to LFS. If your sibling is still fighting, then personally I would recommend you stop reading here, but of course it’s up to you. If you do carry on then please bear in mind that what happened to my brother is by no means a certainty. Science is moving forward and new discoveries being made every day that could help in your family’s fight against LFS.

Losing a sibling too early is probably one of the hardest things you’ll ever have to go through. People deal with it in all kinds of different ways and there is no right or wrong answer here. You’ll probably be offered therapy – something I turned down all those years ago. Sometimes I regret that, but it’s impossible to think straight when something like this happens. It doesn’t matter how old you are, you won’t deal with it perfectly, but that’s okay.

When I think back to when George died it’s all a bit of a blur. I was twelve, he was only seventeen. There are things I don’t ever remember doing and there are things which just seemed to fly by. I remember crying a lot. I barely remember the funeral. I remember going back to school and not knowing how I was ever going to talk about it. In the end one of the teachers explained the situation to my class before I went back to school and I think that was incredibly helpful. It took me a very long time to be able to talk about it with my friends. I’m not sure whether that’s just a guy thing or not, but I felt uncomfortable expressing myself like that. Eventually I did an assembly years later where I explained what had happened and why people should donate to the Trust. It was incredibly difficult but I felt better about it afterwards. I’m not saying you should do the same thing, but don’t worry if it takes you years to talk about what you’ve been through. Just know you’ll feel better once you do.

It seems strange to say this, but some good things can come from losing a sibling. It’ll change you as a person, but that’s not always the worst thing. You’ll have gone through something that most people never have to and that will change how you perceive the rest of your life. It puts everything else that happens into perspective. It’s how I’ve got through 2020 and just about kept my head above water. My family are healthy so really there’s nothing more I can ask for.

Of course I would rather none of this ever happened. But at some point I accepted that this is just the way life is. Ten years on and I still think about George all the time, but it’s easier now. I don’t believe in God but I still believe that my brother is out there somewhere, looking over me. Maybe that’s naive, but we do what we can to get through these things. If you’re going through it too, just know that you will come out the other side eventually and you might even be a better person for it.