Let's Talk About Brain Tumours

Episode 48 - (TW) Coming to terms with change

• Episode 48

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(Trigger Warning)  In this episode - Benj talks about the impact of his daughter Ivy's diagnosis and coming to terms with the changes this has brought to both Ivy and their lives as a family.  He talks about the impact on mental health and the impact of trauma that parents and loved ones experiene as a result of a brain tumour diagnosis.

This episode contains conversations that some people may find distressing such as the effects of the tumour and treatment.

It's important to remember that everyone's experience is different, your experience and opinions may differ from what is discussed in this episode.

If you are affected by any of the subjects raised in the episode please do contact our support team on 0808 800 004 or email the team at support@thebraintumourcharity.org.

If you would like to know more about our counselling service you can find information here

We also offer Relationship counselling which you can find out more about here

You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.org

You can find out more information about Craniopharyngioma here.

You can find out more about our Children and Families Service here.

Sarah:

Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival. Before we get started on this episode, we do want to make people aware that this episode is talking about childhood brain tumours, and the impacts of treatment surgery, and the actual brain tumour itself on both the child and also on their families. So please do be aware before you start listening, and if there is anything in the episode that you find upsetting, please do contact our support team. Details will be in the show notes and at the end of the episode. And with that said, we're now going to continue with the episode. Welcome to the podcast, we're joined again for the second part of our conversation with Benj, whose daughter Ivy was diagnosed with a brain tumour. If you haven't listened to that episode, you'll find a link to it in the show notes for this episode. In this episode, we're going to be talking about the emotional and psychological impact that having to make life changing decisions about a loved one's treatment can cause. Some people may find this distressing but it is a reality that so many people have to go through and this decision, it's people being put in very impossible situations, in situations they would never in a million years have ever imagined they will be put in. So with that said Benj, welcome to the podcast.

Benj:

Thank you very much. Thanks for having me.

Sarah:

And I'd like to say thank you, I think it's incredibly brave of you to be able to come here and talk about something which is very difficult, I think, until you're in a situation where a loved one is sitting in an ER, when you're being told, you're going to need to do this kind of treatment or that kind of treatment, you haven't to make very difficult decisions, I don't think anyone can ever imagine what that must be like. So your daughter, Ivy was four years old, she was diagnosed with a brain tumour and you were told, you've got three options and none of them good. In that moment, when you've got to make a decision that you know is going to have, because let's face it, there's, you know, your child, your child's got a mass in their brain, you know that that's not going to be good and whatever treatment they're going to need to do to treat that isn't going to be good for your child. What does that feel like having the weight of that decision?

Benj:

I think I think that initially, you, you sort of refer to what to probably to somebody else who knows more than you do, just simply because you're you're trying to find, and that's not but don't get me wrong, it's not me saying, oh, well, I am trying to shirk my own responsibility of making this decision. Then the enormity of the decision, as you quite rightly said is, is it's the biggest decision that you'll ever make in your entire life because, you know, your child can't make her own decision for her, you have to make it for her. So the enormity of that is huge but in order to try and get to the right decision, you're trying to elicit the help that is available to you, and you're trying to draw in expertise that you simply don't have, what do I know about the human brain? Virtually nothing, and so you're trying to find, well, what if this was if this if this child wasn't mine, and it belonged this child actually belong to the surgeons, what would they do? And so that was the first question that I asked was, you know, how do you? How would you handle this situation? And so they told told us that they would, they would operate as opposed to going down the route of leaving it for a period of time and operating later or going for proton beam therapy. I think, I think the overwhelming feeling that I had, and I know that Sarah had this, my wife was, I just hope we get this decision, right and there's no real, you can ask the surgeons and the surgeons will tell you, this is what we would do and that's exactly what happened, but there's no way 100% of knowing this is the right decision. Now, just so happened that actually months, not months later, but after the surgery, they said we made the right decision, that we operated because actually had we left it any longer, Ivy would have gone blind because of where it was situated and had we sent her to Manchester for proton beam therapy, it would have been too big for that treatment, the tumour was too large. So we made the made the decision, let's carry out the only option that we actually had

Andy:

when you were told or asked to make that decision when you didn't have much information, were you given time for that? Did they say come back in a week? Or was it literally make the decision here and now and trust your instinct.

Benj:

I mean, they said to us, you, we can't leave this too long, you know, we can't leave this months and months and months, and decide in six months, we need to make a decision of what we're gonna do fairly imminently. But it wasn't like, you know, you've got four days, you know, go and have a think about it, there's no pressure, we were never put under any pressure to make that kind of decision. When Ivy was first diagnosed, we were under serious pressure because Ivy, as her surgeon said to us Ivy's dying to be fair, he didn't say that at the time, he told us weeks later, when when you brought Ivy in she was dying. I think that probably was was harder to come to terms with than actually making the decision of, of what we were going to do next because they made it fairly clear to us what what was the right decision, but nevertheless, the the enormity of the fact that we had managed to save Ivy's life, because actually she was hours away from dying when we first brought her in and then on top of that, making a decision that there were there is no, there's no certainty, there were no guarantees of anything, and there was still a real chance that Ivy would die.

Sarah:

And you told us a story when we talked when we met to talk about this episode that really struck me and I just thought that is something that's going to live with this man for the rest of his entire life and how does a parent deal with that? And it was a story you said about after surgery where she woke up and she couldn't see and the story about after she had an accident in bed and you tried to clean her and I thought gosh as a parent where do you put that?

Benj:

Yeah, I think I think that is that will live, you're absolutely right, that will live with me for the rest of my life because I think that that was such a real moment. Ivy had, had she was, I would have thought like a week post craniotomy so her major surgery took 12 hours to complete and she was laid in be and the bed was up probably about 45 degrees and so she'd had an accident in bed and she had messed herself and, and so she could she could walk, so I you know, I managed to clean her enough just to try and get her out of bed and to walk her down the corridor to the bathroom. I was holding her hand and I walked her down the corridor to the bathroom and the nurses were trying to get the bath running, it was one of these really fancy electronic baths that decided to give up the ghost just when we needed it the most, and we stood there waiting, and they were trying to get it sorted and as as the seconds tick by, I could tell Ivy was starting to become shaky on her feet and I said to her Ivy are you ok? And she suddenly just passed out and I caught her and she went down onto that sort of, you know, onto a onto her bottom. I was holding, I was holding under arms and she threw up so she's now got sick down over and and I remember the feeling of you know, they hit the red button and suddenly 15 people were in the room and they took her blood pressure and made sure that actually, you know she was okay, because she passed actually going unconscious, and she came back round and I said look, she's okay, let's just get back to her bed and I thought I'll give her a bed bath in bed and just wash her. And I remember I picked her up and I had her under my arms and I had sick all over me, mess all over me and all over her and I and I get choked up every time I tell this story because it just it's so real in my mind and, and it I remember every single minute of that every single minute of it. I got her back in bed, they put a mat down on the bed and put her back in bed and and and I got the you know, I said to them, I need some water and I just need some wipes, can you just get me there, please. And they said why don't why don't we do it and you go and have a sit down and get a cup of tea and I don't know why I just said I can't do that. I have to do this. I have to, I have to clean her and it was almost, it was kind of looking back on it as I was kind of symbolic of the fact that you know as a parent, you just have absolutely no control over this situation and there's nothing you can do to save your little girl and that feeling of helplessness is absolutely truly traumatic and mentally takes you to a very dark place. But the one thing I could do was wash her and so I stood there and I washed her and tears just ran down my face and you know I painstakingly washed every bit of her to make sure that she was completely clean and I thought she's at the worst, the worst period of her entire life, tiny little life and I have to be there, I have to do this, I have to, I have to be the one to clean her. I don't want a nurse to clean her and and nothing against nurses but she needs her dad, like she needs her dad to do this and until I did it, and one of the nurses put her arm around me and said, you're doing so well and that experience will will live with me forever, because it was a moment of, of darkness really of just just thinking to myself, like how did we get here? How did this happen? Like, there's nothing I could have done, you know, I almost feel, I wish I could blame myself in some way for this, like, I wish I could put myself into her situation but you can't do any of that because you haven't brought that situation on yourself.

Sarah:

And I think as a parent, you know, we talked about the fact that every parent, you know, even healthy children feel guilt, about just just general, I think parental guilt is just a thing that, but when you're in that situation and your child is there in that situation, and you as a parent, you're still having to deal with this situation but you're that's it's such a traumatic experience and like you said, even now it chokes you up talking about it, because it is such a traumatic experience that no parent should ever have to experience.

Benj:

No, I mean you know, you wouldn't wish this on your worst enemy, of course, I know that that that expression exists and I think that the hardest thing about this, this experience is that you, you just feel completely helpless. But you also know that you are going into, you know, the darkest recesses of your mind, really the darkest fears of that any parent has is of, you know, their child either dying or their child becoming seriously ill and their life not ever being the same again and, and, you know, I've walked that and I have I'm still walking there and you know, it is truly agonising. But, you know, the message I would have for a lot of parents and a lot of people going through the darkest periods in their lives is you are so much stronger than you think you are, you have no idea just how strong you actually can have dig how deep you can dig how much you have in reserve, to be able to, to go above and beyond, to be there for your family, to be there for your loved one who is suffering so much and often that journey is a lonely one. Often that journey is a journey that people don't see what you do, they don't see the kind of extent of what it does to you mentally of where it takes you of, you know, the amount of tears that you shed or the amount of nights that you you, you lose, cos you know, you're looking after your loved one in the middle of the night or you know, the times when you're working in the middle of the day and you have a lunch break, but that lunch breaks actually just sleep is sleeping on your lunch break just to try and recover from the night before of not sleeping and looking after your child or your child having messed themselves up in the middle of the night and you have to try and pick them out of their bed and get them to the shower at 2 in the morning and shower them down or locking the door to stop her from going into the kitchen to steal food or, you know, all of these things are, they they they break you down. They break you down mentally and but during them, there are moments where you stop and go, I am handling this. I might feel like I'm clinging on by my fingernails, but I am handling this and I'm doing this, you know Sarah and I are doing this together. We are, we have been through hell and you know, we've managed to survive so far and we've been through the worst of it and we've managed to survive, it's like

Andy:

Have you ever had the like the why me sort of feeling, it's not fair, all that kind of stuff?

Benj:

So I think I think that I understand that that point Andy I do when somebody says you know why me and I have been there I agree I've been there. But my initial feeling was certainly why not me? Like the amount of people that go through this somebody's got to go through it and it happens to be me. I think what I'm I'm suffering with more than anything is why not me and why her?

Sarah:

Yeah

Benj:

Why? Why would she have to go through this and not me? And you know if I could go through it, then she wouldn't suffer. She would have a life in front of her, a healthy life and that that, you know, that little girl would still be here. But the truth of the matter is that Ivy is gone now and she's gone because of what the tumour has done to her personality and her brain and, and I know, this is probably really hard for a lot of people to hear but when your, when your little girl is perfectly healthy and you think nothing's ever going to take that away.

Sarah:

You have a future, whether it's right or wrong, you have their future planned out, don't you?

Benj:

That's right

Sarah:

You think that they're going to have hit certain milestones, they're going to do certain things, and you might not know exactly what, but you think they're gonna have a long, healthy, happy life and

Benj:

Yeah, and then suddenly, something like this, it's like a bomb that goes off. A bomb goes off in your family, and the ripple effects of massive. It's like a vortex just sucks everything into it so you know, the centre of that, the epicentre of that is Ivy, and what is Ivy is going through all the medication, all the appointments, all the surgeries, but then the you know, the circle outside of that is what it does to the other kids. Then the circle outside of that is what it does to your marriage, you know, the amount of marriages that have gone under because of this and and we had, you know, this was a huge learning curve for us as a couple. You're both dealing with the same thing but you're both dealing with it in different ways.

Sarah:

Yeah.

Benj:

So how do you learn in the moment, and this is this is in anger, you know, this is this is actually happening. It's not like a practice run, you know, in the moment, you're now having to work out, right, she's dealing with it the way she's dealing with it, I'm dealing the way I am, neither of us are dealing with it in the wrong way, we're just dealing with it in our way. And how do we learn in the moment with no sleep with the stress of appointments and dealing with medication and dealing with all the other stuff and surgeries, how do you learn in the moment to respect one another's ways of handling it and at the same time handling, handle it your way and make sure that you still have enough energy for one another, you still have enough time for one another to be able to go out and spend some time together. It's the hardest thing I've ever done in my entire life and, and you you know you are having to do something you've never ever thought you would ever have to do.

Sarah:

And like you said, you're both grieving for your your your child, even though she's still alive. You are grieving for the life that won't be lived in some ways that you know, is it for she's gonna have a very different life now.

Benj:

Yeah,, I mean, I mean, like, you are, you're absolutely right, you are grieving and we've said that a number of times that this, and we've met up with with other with another parent who, who went through exactly the same process with her child, same tumour, and it was the first person that we ever met, that was saying the same things that we were saying. We've always said Ivy died on the fifth of January. She's gone, she, we spent the best part of last year trying to bring her back and towards the end of last year, we realise Ivy isn't coming back and we have to, so what you're doing is you you're grieving at the same time so you're grieving the death of your child but at the same time as grieving that child, you're also now having to adapt to not just a new child, but also a new family dynamic. The other kids are having to adapt to a new sister, how on earth do you do that, at the age that they're at? So

Andy:

It's not a choice was it's not like you decided to have another kid this has just been thrust up on you hasn't it

Benj:

It's just it's just suddenly somebody's taking your child away and they've delivered another one and during that process of Ivy, going through all of these changes, you know the weight gain, the huge psychological or personality personality disorder in many ways, where she just can flip into becoming aggressive and and, you know, one point she was eating herself to death, there's no doubt about that, you know, gaining a kilo a week and you naturally ask the question, and I'm not afraid of of saying it. You ask the question, would it have been better to have lost Ivy? Would it actually have been better for her to not have suffered so much? Where she now has to live a life where she can barely walk really, for any length of time, any distance she can walk for 5 - 10 minutes and then she can't walk any further than that she's gained double her weight. She's she's suffered so much with surgeries, treatments, her personality is completely altered. She's a completely different person and, and that suffering, she's now going to have more treatment, that suffering and psychological suffering as well that she's going through, you know, telling us how much she hates herself and you know you think to yourself, is this a life that she, you would want your child to live in? And that it's a scary feeling that when you think should, would it have been better for her if we'd have lost her? And,

Sarah:

And yet, at the same time, if you're in that situation, again, you'd make the same decision again because like you said, in that moment, you didn't know what,

Benj:

No, I mean, this is the thing with hindsight, we're talking, yeah, we're talking about hypotheticals here and the truth is, is the, what would you do if you had that situation again, of course, you do what we did, which was to save her life and to get the treatment that she needed and so we're having to sort of work out, right? Is this the right thing to feel? Is this the wrong thing to feel?

Sarah:

It's such an impossible situation to even contemplate, isn't it?

Benj:

Yeah, but but the one thing I would say is that whatever you're feeling, any parent who's listening to this, and has gone through this, or is going through this, what ever you feeling is not abnormal.

Sarah:

Yeah, I've heard parents say this over and over again and the shame and guilt they feel in saying it is, is almost sadder than the fact that they're feeling it because It's like, you shouldn't feel the shame and guilt because as a parent, nobody wants to see their child suffer, nobody wants their child to go through any of this and it's normal to think I can't bear the thought of my child suffering like this.

Benj:

Yeah and that's suffering, that you see your child go through, you almost have to, you have to, you have to learn to accept that she's going to suffer. Well, how do you learn to accept your child's gonna suffer? How do you come to terms with that? How do you actually understand now this is the reality your child's going to suffer. it's the last thing that you would ever want your child to go through you, as a father, as a parent, all you can think of doing is protecting your child as making sure no harm comes to them whatsoever. So to be in a position where actually you feel, you know, would it have been better for my child not to suffer and have passed away? Is, an horrrendus feeling, it's a terrible, terrible feeling and you know, when we shared that feeling with my parents, and other family members, it didn't get a positive response. So the response was, yeah, but come on, Benj, she's still here, look, she's she's smiling at you or she's, she's walking around the garden or, and they just simply don't understand what you've lost. They're just, you know, they just have no idea and, and initially, that feeling is anger, you're, like you're angry towards them because you think well, you don't you don't understand, you don't understand what I'm feeling, you understand what I'm going through as a parent and. But then, you know, you stop and you think to yourself, yeah, but hold on, how can they know? How can they really understand because nobody really understands what you're feeling, unless it's a parent who's been through what you've what, who's walked your journey, you know that the journey of a grandparent is entirely different to the journey of a parent who has watched their child go through something so traumatic. So, you know, whatever anybody is feeling about that kind of experience, I have so much sympathy, I have so much empathy with whatever that emotion is, because it's not wrong, it's not wrong to feel that way, it is, it is an understandable emotion.

Sarah:

And I think this is so good that you're able to talk about this. This is an opportunity for anybody who feels like this and is really struggling with this, we do have the counselling service and I would say to anybody use it. If you don't use our counselling service, go to counselling, because I think these feelings are normal, but I think they're not something that people feel comfortable to say because if unless you've been in this situation, you're absolutely right, Benj, you know, people don't understand, and people can shut those, you know, shut that down and they can make you feel ashamed or guilty or like you're a bad person for expressing those feelings when they have no idea, no idea at all, what how much torture it is for a parent to watch their child go through something like that.

Benj:

Absolutely and, you know, when I when I think of, when I think of that, you know, the darkest recesses of my mind that I've been with, I've been through a journey of pain and a huge distress and agony. I think that had I not been in a place where I could talk about it or being in a place where where people were willing to listen, then things could have been very different and, and all I would say to anybody who's going through this, but doesn't feel they can talk, just just start the ball rolling with somebody, you know, that you need to find a person or a counsellor or organisation that really understand what you're going through, like truly understand it, because not every counsellor will understand what you're going through. I've spoken to counsellors, and I've told them what's happened, and they've just looked at me like a rabbit in headlights, as if to say, what the hell do I do with this? And, and you're going to them to say, what the hell do I do with this? And so finding the right person is really important and that's where, you know, brain tumour charities, that's the specifically understand this situation, are the people to go to go to because they have experience of dealing with parents or families that have been through this sort of situation and so can you know, that there's, there's no stigma, there's no, there's no sense of you can't there's not. There's nothing that you, there's nothing, you can't say to them, that they're not going to go yeah, I've heard, I haven't heard that before. They're gonna hear it and think I've heard that before, or, you know, it's at least been expressed in a similar kind of way and that feeling of of knowing that you're not alone, is is really powerful and it's in it allows you to heal It allows you to grieve what you you're actually experiencing and the journey that you're actually walking because we've been grieving and at the same time adapting. Normally, what happens when you're grieving is you grieve,

Sarah:

Yeah

Benj:

Well, now you've got to grieve and at the same time, adapt to a new child well, that that is that is mountainous, you know, it's monumental to, to go on that kind of journey and so, you know, I would just encourage anybody to just just to reach out, I think, I think, you know, particularly think of men and how many men die from suicide, because they don't, don't feel bold enough to show their emotions and actually reach out and talk and, and, for me, I just want to try and inspire others to, well, definitely people to talk about their mental ill health but then also, if they think there's something not right with their child, you know, get them seen, you know your child better than than anyone else does.

Sarah:

Such good advice, I really want to thank you personally for being able to come on talk about it because I know I've had conversations like this with parents and the shame and stigma they feel and if we can't normalise it in this day and age, you know, and give people the right because like you said, it's very healing to be able to talk by this and say, this is how I'm feeling. I don't like the fact that I feel this but this is, this is what this situation is like for me and this is what I'm going through.

Benj:

Yeah, and I'll just say one other thing as well Sarah for anybody who is listening to a parent, to anybody who is the hearer, and somebody who's trying to support somebody who's who's got a child going through this, you've got a huge responsibility and your responsibility starts with this don't say anything, don't try, don't try to tell that person how to handle it, because you don't know how to handle it. But what you can do is you can be the beacon of support by doing something that so few people know how to do. And that is to listen. If you can listen, and listen without judgement, and listening without criticism, and have a completely open mind as to the experience that this person has been through, you can do an in immeasurable good to that person or to that family. The best people that have helped me have been people who have, who have just simply looked into my face, and said, I don't know what you're going through Benj, but I'm going to be with you every step of the way. I'm going to hear every word that you've got to say. And the power of that is more than any words could ever could ever give. So I would just encourage anybody who's being a support team around anyone going through this, just listen, it's so powerful.

Sarah:

Absolutely perfect advice, thank you so much, Benj.

Andy:

Really amazing wow.

Sarah:

Thank you for that.

Benj:

Thank you for the opportunity.

Sarah:

You're absolutely welcome. If you've been affected by anything discussed in this episode, and would like to speak to a member of our support team, you can call our team on 0808 800 0004. You can also find information about our counselling service in the show notes below. If you've enjoyed this episode, it would really help us if you could head on over to Apple podcast, Spotify, or wherever you get your podcasts and leave us a review as it really helps podcasts like this to reach more people. Thank you