Let's Talk About Brain Tumours

Episode 50 - Life after losing a parent - Growing and Thriving

• The Brain Tumour Charity • Episode 50

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In this episode Will Garrett talks about the death of his dad when he was just 11 and how this has shaped his life.  Will is now a Neuro Oncology Clinical Nurse Specialist, a career that was shaped by his experieces as a child where he now works with other families who are impacted by brain tumours. Will shares what it was like for him as an 11 year old and how he looks back on his experiences now as an adult and a parent himself.

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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. Welcome to the podcast. Today we're joined by Will Garrett, who was so impacted by a brain tumour diagnosis in his family when he was younger, that he went on to become a neuro oncology clinical nurse specialist. So welcome to the podcast.

Will Garrett:

Thank you, Sarah. Thank you. Um, yeah, so so so my name is Wil and I am the lead neuro oncologist CNS at the Queen Elizabeth in Birmingham, and as Sarah's just alluded to, the reason I got into this role was because of the impact that a brain tumour had on me from a very young age. I lost my dad at 11 years of age to a glioblastoma and that has obviously impacted me to be at the stage where I decided this is what I want to do in my life. Just a bit of history about what happened with my dad, so when I was 11, so round about the Christmas of 1993, going into 1994, my dad was complaining of double vision. He was normally fit and well, he was 39 years of age fit, and well, two kids, a wife, he was fitting well works every day, and then complained a double vision, went to doctors and I remember over Christmas and New Year he had a few headaches, something wasn't quite right, but me and my sister were protected from it and then the beginning of that year, he had to go for surgery on on a brain tumour and then on to get underwent radiotherapy. Me and my sister were were kept in the dark for a long, long periods of of what was going on. But yeah, I remember my dad went through treatments, and unfortunately, I lost my dad in October of 1994.

Sarah:

You were 11 and your sister was how old?

Will Garrett:

She was nine.

Sarah:

She was nine, so pretty young family to be going through something like that.

Will Garrett:

Yeah and it was it was it was strange period of time as well you know, if you think about when you were 11 you know, I was just left primary school, I'd gone into high school, my sister was towards the end of her primary school, you know, your, your child, but you're, you're a bit more grown up, you're not, you're not that, that, you know, you have to that doesn't know what's going on the world. But at the same time, you're not fully grown up to fully understand everything that's going on. So it was a strange.

Sarah:

Did you understand something was serious?

Will Garrett:

Yeah, so I remember I mean, we were told he got a brain tumour and had to go for surgery. But I remember, you know, my memory, as I've been told it, you know, it's nothing to worry about, you know, I've not spoke to my mom, since I've spoke to my mom about doing this podcast and just give you more details on what she remembers. But I haven't actually approached her about that, but my memory was of being told actually Dad's got a brain tumour, which is nothing to worry about and I've got a really vivid memory of when he when he was in having surgery, and an old school friend of mine, we were on our way to school, and he's like, you know, how is your dad and you know, what's going on? And I remember saying to him, he's got a brain tumour and I knew the words that left my mouth and, you know, I was 11, you know,I was a smart lad and I knew that, you know, not knowing anybody got cancer or not knowing that he was I knew that tumour was a bad word.

Sarah:

Did you know, it was cancer did you...

Will Garrett:

No not not at this point, but I remember this. I remember my mate. I just remember his face. I still could still see his face when when I said he's got a brain tumour this look like horror. And I remember saying to him, but don't don't worry, you know, you know, he's, you know, he's gonna be alright, and I just remember looking at me thinking, you know, and you can see in his face, you know, are your sure? And then with the other conversation ended, we, I mean, we were I don't think we're told at any point that he got cancer.

Sarah:

That must have been really scary to watch. So we went through my dad was reasonably well through the summer. you know, we went through a lot, you know, winter summer holidays, you know, we made lots of good memories and, you know, looking back, there's a few odd things that that happened, you know, we went on holiday I remember staying up it was USA'94 World Cup. My dad was a massive football fan and I've got him to thank that I'm a massive football fan as well, you know we stayed up and watched loads of games during the USA 94 World Cup. I remember him. I remember him, you know'which is your favourite shirt Will?' You know, I actually thought the USA'94 shirt and it was awful, awful, like blue shirt with white stars and he bought it for me like the next week, I'd got this shirt and i look back at it and I think actually I know why now. But you know, we had good holidays and it wasn't until sort of the end of the year he got really unwell and you know, we then we ended up with having like Marie Currie sitters coming overnight, you know, we ended up into a hospital bed and actually, we I don't think we were really told and I don't know, looking back and and then when we were smart kids, you know, and I don't know whether it was just naivety or whether it's just been so young. You know, we'd seen him deteriorate, you know, we'd seen obviously seen him lose hair through radiotherapy and you know, we'd seen him get weaker but, you know, another another memory from football. Later we went to watch a game he took me to watch Stoke v Wolves on a night game, and he had a massive seizure and I look back you know, at that point, my mom was furious because I remember there was arguments for about him going and my mom was furious and he had the seizure at the old boothing end and and you know, and we've got St. John's Ambulance and as a kid, I remember thinking 'Why Why have you done this to me?' You know, as a dad that that's not what dads do, that's that, you know, that isn't that's not fair, you know, and I was with strangers and you know, when we got back to the house and my mum was completely, I mean it was okay, we got back now to look back and that was last football game you ever went to was Stoke was his, his family was his love but his second love was close it was Stoke and that was the last game he ever got to go to and at that point, it was like, something's not quite right here, you know and then we have an a further seizure. um on the top of the stairs, um he was unresponsive

Andy:

Has anyone, at that time ever sort of sat you down and said, this is what a brain tumour is and these are likely

Will Garrett:

No

Andy:

sort of symptoms so don't be surprised almost if he has a seizure that that could happen, or was it all you learning it as you went along?

Will Garrett:

No, it was just, we we, I knew he'd got a brain tumour, I knew he wasn't well, but it still and again, I don't know whether it was the naivety of childhood or whether it was just we weren't told. He was gonna get better, you know, so whatever was happening was, oh, this is scary, you know, and I remember one seizure in particular, on the top of the stairs, you know, we lived in a council house and with these quite steep stairs, and the toilet was at the top of the stairs, and he'd gone off to the loo and then he'd fallen back. I mean, luckily he didn't come down the stairs, but I just remember him being unresponsive on the top of the stairs and that was frightening, you know, as as a kid, and especially as a son, you know, your dad's big, strong, you know, invincible, you know,to see your dad unconscious. It was frightening, but no, we

Andy:

Especially I guess if you didn't know that, that was a possibility. It might happen that must just, because I can't imagine being an 11 year old kid, I'm assuming you didn't know anything about brain tumours,

Will Garrett:

Nothing, nothing.

Andy:

So that must have been really scary.

Will Garrett:

Nothing I didn't know was possible. I didn't know what was happening, you know, but then, you know, he came around, and he was okay and you know, we only carry on. But no, we weren't really told the severity and as I say, I look back and I'll think I'm hard on myself thing you know, what on earth, how did you not get it, but I was a kid.

Sarah:

And also, it was a choice that your family made not to tell you and your sister, but obviously all the adults around, you would have known what was going on. So there must have been this weird kind of dynamic with the adults, you know, having knowing what was going on and kind of that must have affected them and their behaviour must have been different because they were much more aware. But then you're kind of you and your sister are kind of in this kind of weird.

Will Garrett:

Bubble.

Sarah:

Yeah.

Will Garrett:

Yeah. And, you know, I mean, towards the end now, you know, we've got a really close family, a really strong family and I've never seen so much of them and then actually, I think going towards the end, yeah, we've got the Marie Currie sitters coming in at night and we got, you know, my Nana, my grandma around regular aunts and uncles, you know, that there's lots and lots of people around towards the end and again, it just felt like normal and it wasn't until

Sarah:

You say it was towards the end did you know it was towards the end?

Will Garrett:

No. So he was getting really poorly really, you know, really poorly going to the hospital bed, he was you know, he's not waking much. But I still had this belief is gonna get better you know and again, I don't know whether that you know, whether it's been lost in memory that we were told things are bad, but my my only memory of being told that things were really bad was on the Saturday. So he passed on the Tuesday, the Saturday before we went to my nan's and we had there's a lady from from Macmillan came and sat me my sister down and I still remember it vividly, you know, and started talking about how bad things were and I still remember to this day, my mum and my sister asking this lady, is he going to die? And me like, I don't know, whether it was like big brother or it was just bravado you know, everyone's gonna die, you know, what are you, why why you're asking that everyone's gonna die don't be daft. But no, he was gonna die and that was on a Saturday and you know, a few days later, he'd gone

Sarah:

You had very little time to get your head around the fact that your dad was actually going to die then?

Will Garrett:

I still don't really think it really settled in you know, all that I knew what was happening. So you know, So I was gonna ask I don't want to sensitive or too sensitive the week before you know it must have been half term because I remember my granddad taking us to the motor show and you know, people were taking us out here now. Looking in hindsight, they were getting out the house while things were were really bad. You know, I mean, on the day that he died, my nan my mom's mom and dad, just angels, you know they are to me, my sister out and I'm but when you said you were told by Macmillan nurse that it's going to a to a market. There was like secondhand things like jumble and buying some Star Wars figures and you know, we would rush out the house in the morning, and then we got back to my nan's. We'd got to the bus to go back to my nan's and my granddad was waiting for his outside and just said it's happened and I twigged already you know that this is it, you getting to the end, do you feel in hindsight, that might have know, some sort of I knew at that moment in my life was going to be different from this moment on, you know, when we my granddad drove was over to our to our house. You know, I remember going out the house, get out car and I could just hear sobbing. I mean, scre.. proper screaming, you know and been better coming, or easier coming from a family member it was my nan, my dad's mom was screaming I mean proper screaming I can still hear the screams, you know, as we go in and you know, we, we went into the house and all my family where, you know, the house was absolutely rammed and my dad was in the front room and my mum just gave us a hug and a kiss. rather than a than a nurse? I'm just thinking, if others listen and she told us she loved us and you know, but we weren't allowed to get to see my dad, I wanted to go in that point. You know, in hindsight, I'm quite glad I didn't I don't think I was prepared for that and then, you know, met with the family than my nan and granddad took us back took us back to theirs whilst you know, my dad was taken away and the hospital bed was to this, and wondering how the heck you deal with this sort of removed, and it's just a horrific, horrific day. situation, I'm just curious. No, I think that you know, and that's something I you know, I've been in this role now, for seven years, it's something I often ask myself, you know, and then actually, I come back to the same answer I've had, even before I started this role, you know, my mum was, my mum would have been 32/33 when she was widowed, you know, my dad was he was 39, when he was when he was diagnosed, he died at 40. I've got no, you know, I don't hold anything against him for not telling us, you know, they did what they had to do, they were put in an impossible situation.

Sarah:

And also, I mean, I, it all depends on how you are as a person. So I think there are some people that could hold it together to tell you, but there are also some people because you know, your mum was dealing with her own

Will Garrett:

Yeah

Sarah:

Her own emotions and if you think you can't contain your emotions, you're not going to be able to hold it all together, because your children need you to be strong in that moment and if you don't feel you can, getting somebody else to do it, is probably

Will Garrett:

Yeah

Sarah:

Because it's the moment that you're gonna remember for the rest of your life, isn't it?

Will Garrett:

Yeah

Sarah:

That moment you get told, and if, like you said, when you went back to the house, and he'd actually died, and everyone was screaming, and there was, if you had been told in that way, where somebody was overly emotional, that probably would have done more damage, maybe

Will Garrett:

It could and you know, and I often say to my patients, you know, in on the, you know, being on the opposite side of this. Now, there's no rulebook for this, and actually, it's a nightmare scenario, and you do what you have to do to survive. You know, actually, if they, you know, if they got through that by, you know, by keeping us in the dark, and I thought that was best for me and my sister, and that was then it was best for me, my sister, because I look back now and I think, what would I have done differently if I'd know? You

Sarah:

We get parents asked this all the time, how do I tell my know, that's summer holiday, we went to Skegness if I'd known that was the last holiday we were ever going to have, as an 11 year old. I don't know how that would have weighed on me, you know, and I would never, you know, I think every family is different, you know, the way that my family dealt with it, it may not have been perfect. But you know, it's not for me to judge because actually, my mum and dad made the best decisions they, you know, were face with what is, you know, a nightmare. children? What do I say? How much should I tell them? What should I tell them? And it's such a personal thing, isn't it? Because you've got to be comfortable in yourself with what you're going to say. But you've also got to be comfortable with how your children are going to respond to that is, like you said, was it better for you and your sister that you didn't know, when you were able to have some of those experiences unmarred by it. You knew your dad was unwell to some degree, but you had no idea how unwell that things like that holiday in Skegness the football matches and stuff would you have very different memories of that now?

Will Garrett:

Possibly, possibly and I don't think I'm in a position, you know, even with the job I do, I'm not in a position to say that this was done right or wrong. Like, you know, it was done, how it was done and actually it doesn't change the outcome may be different and maybe it was told at the time maybe as a child, I just know, put some put some of these, these signals and these signs to one side and just ignored them. Yeah, but ultimately, you know, we've got a, you know, a woman in her early 30s with two kids who's going to lose her husband, you know, and, you know, dad, who was, you know, same age as I currently am now, and I've got two kids, myself, and I put myself in a position. I didn't know what do you know, I've been through this on the other side. I don't know if I told my kids. I don't know. You know, I don't know what I do, because I'm not in that position.

Sarah:

It's such an interesting perspective now, though, isn't it like because you're, you know, right at the other side of it, but also in the position where your dad was in? Because it wasn't just your mum or your grandparents or anybody else that didn't tell your dad also didn't. It was a collective decision, wasn't it? It wasn't any one person making that decision and everyone did what they thought was best at that time and that's all you can do. I think as a parent and as family, it's just do your best. But yeah to think now as a parent, I still don't know what I would do. I still don't know what the right answer would be.

Will Garrett:

No, and you know, and I think so you know, I'm 40, I'm the same age as my dad was when, you know, probably, I think I'm older now than he ever was and I think actually how would I? What would I do differently in that, and I think the one the one sort of regret I have, and I think this is me talking as an adult now is actually being able to go back to him, to two people really. So to go back to my dad and say, actually, do you know, what, there'll be all right. You know, all this, I know, this is, you know, this is happening to you, you know and I think about the worries and the concerns I have as a dad, you know, without this diagnosis, you know, I worry every day about my kids, everybody does, but you know, the thought of leaving at 40 and, you know, and coincidences and a lot of coincidences in my life with regards to my dad, but you know, I became a dad at the same time, he became a dad, you know, so it might my son Harrison now is the same age I was when I lost him. But I wish I could go back and you can't change things and it's all theoretical, but I'd love to be able to go back when he was going through this and he must have gone through turmoil of do I tell them do I do this and thinking for him, this is the last holiday I'll ever have with my kids, you know, this is the last football match I'll ever take Will to, you know, what just say actually, the worries that we all have about our families futures, do you know, this is rubbish, this is gonna be really, really hard and it's, you know, it's gonna be life changing. But actually, because of what you've done before, they'll be alright, you know, I look back and look back on the funeral and I remember standing at my dad's funeral, and it's just utterly surreal, I'm just standing there is my world came crashing down and, and again, I'd love to be able to go to that young lad, put my arm around my own shoulders and say, you'll be alright and actually, you'll do something with this, you know, this, although your world's ending at the moment, and you know, this is going to be rubbish, this is going to really rubbish for a long time, there will be happiness, you know, actually, and you will have a fulfilling life and, and you'll use this for good.

Andy:

Now, that's really important, and also for people sort of listening to this, it's, it's really interesting, it's the wrong word. But it's good to hear that someone like yourself, who's got a unique perspective, given where you are now, with your life and your kids, you still don't really know how you'd react. So it's really important for people because you know that there isn't a right or wrong, there's not a rulebook. You just got to trust your instincts, you know, your kids better than anyone and do what you think is right for them and that's, for me, that's a really important sort of message.

Will Garrett:

I often have, you know, really difficult conversations with families, and, you know, just thinking back at conversations having only yesterday or on Wednesday with patients families, and, and they'll often look to, you know, in my role now, you know, am I doing the right thing, you know, am I doing this, right, you know, it shouldn't be doing this something differently. You know, and I think, you know, I go back to my own experiences, and there is no rulebook, and I, you know, obviously, I'm sure my patients or families are sick, and we say you need to, but actually, as long as you are surviving, you know, as a family member, and as long as you're doing the, what's in the best interests of the patients, and your family, I don't, you know, don't care what anybody else thinks, you know, there's, nobody else knows what you're going through, you know, so if you, if you cry, that that's okay. You know, if you break it down, that's okay. You know, if you need a break, you know, if, when things are really bad, and you know, you, you know, you need a break, and you need to go out, and actually, you know, you need to go meet some friends, but you know, your loved ones at home, you know, in a hospital bed and not well, it's okay to go out and have a meal with friends, you know, it's okay to have that bit of normality. You know, don't worry about what everybody else thinks, because they're not going through what you're going through to actually to go through this, this whole process and still be standing. You're doing the right things.

Sarah:

Yeah, absolutely and something you said as well about fact that, you know, if you could go back to say to your dad, you know, we will be alright, this will be hard, this will be the hardest thing we'll ever go through. I think that will be a comfort to a lot of parents that are in your dad's situation right now that listening to this thinking, what's going to happen to my children from this, I think that's a real concern for most parents that are in this situation is they can see something this big, can literally have the impact of destroying someone's life that a child's life and that's what they've worried about. They don't want this to be the thing that defines their, their child in a negative way in like, in a way that, you know, they're never get over it. This is going to be such a traumatic thing for them to go through. But for you to be able to say actually, you know, I wish I could tell my dad, I'm okay. We, you know, we, we came out of this, okay, it was hard. It was awful. It was the worst thing I could ever imagine going through but. look at me now. I'm fine. I did come through it.

Will Garrett:

It is and I think, you know, it's not just that it's not just parents or young families. I think when you were in that moment, you can't see that, it sounds awful but it's true that life goes on. You know, and actually it goes on without that loved one, but actually, the there is life after it and that sounds awful to say and people can't see it at that point in time and people don't you know, maybe don't want to see that. But you know what your kids will grow up, you know, and they will remember you fondly and I've got photographs of my dad all over the house only this morning, you know, I've got a four year old, my four year old because we have so many photos of him, my four year old at the moment is obsessed with him. You know she's constantly asking this about this the other you know, I love it, you know, and often my wife'll you know, when she keeps bringing my dad up sometimes she'll look at me like, are you're right with this? I am because actually, I want to talk about my dad and it's lovely to be able to talk about the memories I had and, you know, say really oddly, this morning, she was talking about, you know, I've got I've got three granddad's you know, my mum married again, he's a really, really nice guy, you know and it was just, you know, a real big help to me my sister growing up and really happy for them. But you know, she's in a situation now where, you know, why are my daughters and I've got three granddaughters, I've got three grand, that's, you know, and they're all equally important you know and you've got my, my wife's dad, and you've got my mum's husband, you know, who are equally as important you know but actually there's Grandaldas well, who we talk about because you've got three granddad's.

Sarah:

And that that final year you had with him, those memories are probably even more precious now because you're now aware of what was going on for him and how important, like you said, you know, why would he take you to that football match and put you in that situation? But actually now looking back, you can kind of go he wanted that that was the last thing he was going to do, he probably knew that, and how important he, what it was meant to him to be able to give you that memory to look back on.

Will Garrett:

Yeah, definitely and I look back you know, I think, as an adult, but I look back as a dad as well, and knowing the ins and outs, you know, I I'm hopeful that I, you know, I'm being the same dad as he was, you know, he inspired me and he was, you know, we had him for 11 years, you know 11 nearly 12 years and everything I do with my son and now my daughter, you know, is to make memories because I mean, life is short and, you know, I just try and do everything with them that I would hope that, you know, my dad would have done with me when I was growing up and it's weird, because, you know, Harrison now is at the stage so he's just left primary school, he's exactly the same situation I was in, you know, when I lost my dad, he's due to go to high school in September you know, I'm just kind of just making memories and, and doing these things, you know.

Andy:

Have you inflcted Stoke City on him?

Will Garrett:

I have I have, He was he was only asked last night, we went to

Andy:

Ah ok watch the cricket last night and was only asked by somebody who's your team and I saw his head drop and say Stoke Aaahh that's nice though that he's carried that on

Will Garrett:

Yeah, he has as my dad was such a big stoke fan you know, he lived and breathed it and you know, he passed it on to me and obviously living in Birmingham, Birmingham, it's been difficult. I've been down here now 21 years but you still get dragged back and my son who's got a thick black country accent, you know is a massive Stoke fan, we've got Stoke badges everywhere but massively. That's my dad's legacy.

Andy:

Yeah that's good

Sarah:

But also your dad's legacy is that you went on to become a clinical nurse specialist.

Will Garrett:

Yeah it was really odd. I mean, so from a young age, you know, after what I've said, it happened to me. I knew I just knew I wanted to be a nurse. So after my dad, everything that happened with my dad, I ended up in hospital myself few weeks afterwards, my appendix burst, whether that was through distress and everything. So I know my mom nearly lost, you know, she nearly lost her husband and a son and a few weeks. So, you know, it was so rough, and I don't know how she got through it you know, I'm still here to tell a tale. But you know, I remember being in hospital and there was a male nurse at the time, he was brilliant you know as I say you at that funny age where you're not quite a kid, you're certainly not an adult, but you're somewhere in between and I just remember this male nurse, you know, as brilliant as the women were, this bloke just sort of got me into that I could, I could be a male nurse. And you know, from that, that was the moment I was going to do something about you know, I'd seen the the sitter's that came and looked after my dad at night, I'd had that nurse that looked after myself and my granddad had been hospital and he'd had some really good nurses and that that was my plan. So but it was difficult growing up in Stoke you know, as a kid, you know, what are you going to, I'm going to be a footballer and I'm going to be in the army, I'm going to be something really macho, I'm going to be a nurse. I mean, I had, you can imagine some of the grief I had growing up, you know, you'll look fantastic in a dress Will, you know, going back to, you know, like 1990s. Stoke on Trent.. But no, I'd never, never faltered, I was certain at that point, nothing to do with brains that was too close to home, I couldn't do that. But some kind of nursing, and I decided to move to Birmingham because the QE being such a big hospital, and I could do my training here and then my very first placement was neurosurgery and I thought ohh man really, really my very first placement, you're going to do this to me and it just I loved it

Andy:

Was deliberate or was that just pure fate suddenly having

Will Garrett:

Fate Andy it was fate. You know, and I went on there and there's patients with brain tumours and it was actually why am I hiding I could do this. Why am I hiding from this? Because actually been on the other side, I've probably got a really unique experience. So yeah, that was I mean, that was the moment you know, late 2002 as a student nurse on neurosurgery, at the QE it's like here we go not just neuro... if I'm going to do part, I might as well go all in

Sarah:

Did you at that point was that, because I'm assuming that after your dad died, you know that you didn't look into brain tumours and et cetera? Was that the point where you started to understand more about brain tumours and what what happened to your dad?

Will Garrett:

Yeah, so it was probably during my nurse training, I took bit more of an interest. Yeah, I think growing up and into my teenage years, I just, it was just awful. I just, it was too painful, you know, I didn't want anything to do with them. I didn't want, you know, that had happened. But yeah, I think when my nurse training and, you know, when I qualified, one of my colleagues, still, Claire was one of the brain, tumour specialists, nurses, she was fantastic and another colleague, Fred soon joined, and I like to talk to them as being actually this is a, they play a really important role and what they do so from that moment on, as you know, as a junior staff nurse on the wards, I see what I need to do now, I need to knuckle down and get my experience and, you know, speak to my friend Claire as a junior staff, nurse, and that's my aim coming to join, you know, so just put the hard yards and learn more, you know, seven years ago, I was fortunate to have a job came up, and I got to work alongside them.

Sarah:

Did you learn a lot more like has that given you any different opinion of what your dad went through, like from now as, as a child that knew nothing, that just thought you're just gonna get better when you look at his symptoms and stuff. Now, with all that you know, about brain tumours and stuff do you look back at what your dad was going through and think, God how did he, you know, carry on is normal for so long like, where you guys didn't know how serious things were?

Will Garrett:

I think it's such a devastating diagnosis, you know, what we speak to patients every day, and we're delivering this news, you know, that actually, we can't cure this, you know, time may be short, you know, we're going to try and keep you here as long as you can, and try keep as well as you can. But you know, for as long as we can, you know, then phrases like that and, and I often think you know that, I do wonder at what point my dad was told that this wasn't going to be curable, that actually, he wasn't going to be around for much longer and I look back, I think with two hats on, you know, trying to understand more one with what I know about brain tumours now and, you know, and how devastating this diagnosis is, and, you know, some of symptoms, I also look back now as dad, you know, so I can really put myself in his position of like I said to you, when I often get asked the same question, as you know, you do at the brain tumour charity about what do we do with telling the kids? And I don't know, I honestly don't know, I don't know whether that's a rubbish answer, or whether that's just a realistic answer. You know,

Sarah:

it's, it's the question that we always have, and we're actually, always exactly the same, you know, don't know, it's really personal, you know, your family, you know, your, your children, your situation, you know, yourself. It really is very, a very personal decision, and there isn't a right or wrong way. But we get asked that all the time and it's such a difficult thing to answer. because what's right for one person, can be completely the wrong thing for another family, it's so difficult to say, this is what you need to do. But obviously, when people are in crisis, they're looking for somebody to say, take the do this, and then you do this, and then you do this, because they're overwhelmed with the whole situation. But it's almost impossible to tell somebody what they should do in that situation.

Will Garrett:

It is, and I think, I think the right answer is, you know, your family. You know, as I keep saying, there is no rulebook to this, there isn't a, you know, you do A, B, C, and D, you do what you have to do to survive and if that is, you know, if that is giving you, you know, your children, little snippets, you know, Dad's got to go and have surgery, Dad's got a tumour, you know, Dad's gonna have radiotherapy, and then just give them little snippets, or if it's like, you know, with my family whereby he's got a brain tumour, and that's about it. You see him getting worse and your time towards the end. You tell him not, I don't know, you know, your family better and I think as long as you're doing what you think is right. I often wonder, and I've never asked my mum this, you know, and I obviously can't ask my dad, I often wonder whether whether they question in later years, whether they, whether they feared resentment, you know, whether, you know, we'll look back into why didn't you tell me, you know, you should have told me this, I could have done this, that they'll get you. You know, I deserve to know, I don't feel that way at all. You know, I just I just have huge admiration and respect for for people who were thrown into a living nightmare, and handled it the best way they felt. They could.

Sarah:

Yeah, and there is no like we've said, right the way a long there is no right or wrong way and whether you know, your mum feels she did the right thing or the wrong thing. The fact is, you and your sister have both come through it if even if she was to look back on it now and think oh, why didn't you know I wish I'd done it differently because I think all parents regardless of whether they tell their children every detail from the start, or whether they don't tell it anything or all the in between every parent will doubt and question whether they did the right thing. Whether how they handled it was the right way. I don't think there's any parent that look will look back and say I did it absolutely 100% tight. I think there's always that ambiguity, you know, that space where they're like, I don't know, maybe I could have done this, maybe I should have done this, maybe. But I think you're testament on your sister's testament to the fact that actually, it doesn't matter. You will. It's almost what comes afterwards, in some senses of how you all came together as a family, you did tell us a couple of funny stories I did want to touch on just because I think it's really something else that happens is that after a parents died, we get parents that immediately want their children to get some kind of therapy or counselling or because they feel their child needs it, simply because it's such a big thing that they've gone through and you just told a couple of stories about your own experience after your dad had died, where you kind of had that experience.

Will Garrett:

Yeah, so we went to counselling and actually, I've since we've last spoken, I've asked my mum about this, and and my mum was absolutely adamant that counselling was the best thing for me, my sister, you know, it's it got us out of what we needed. It's not my recollection. So I mean, my recollection, you know, we used to go once a week, and we'd have to sit with with other bereaved families, and we'd sit down, and we'd have to draw how you're feeling and I hated it. absolutely hated it. I just, you know, I didn't need it you know because the counselling, it's only came up recently that I'd ever been through counselling. We couldn't, I couldn't completely be repressed it. But I spoke to my mum recently about she was like like before I'd said, I'm talking to the brain tumour charity and about this podcast, and I said that counselling was rubbish and before I managed to get in, she was like you know what, the best thing that we did for you was counselling. So obviously, I'm sure if she listens to this, she'll be fuming. But you know, I just, I just completely find it's complete and utter waste of time as a kid I hate I hated going there and, you know, I hated sitting around with other kids who'd lost their parents because I didn't need that. You know, I remember we went to we went to Blackpool one year on a bus, all these bereaved families, it was just all everyone crying. I just, it was just awful. absolutely awful. You know, what I needed and, you know, I didn't get part of this, what I what I needed was my family you know, my mum was amazing and my mum's family were amazing. My, my dad's family disappeared and, you know, so really quickly afterwards, we went from such a really big, close family and my dad's family just vanished you know, they use this as an excuse, I looked so much like my bad, you know, I couldn't possibly be, couldn't see it, because it reminded me and my brother and come on I'm 11, nearly 12 my sisters, nine, we've just lost a dad, we need, you know, I'm sorry but I don't care if looking at me upset you, you know, you need to be there your my family and they just vanished so you know, overnight, I did just lose my dad, I lost half my family.

Sarah:

That's something that I've heard before. I don't think that's, you know, a unique thing. I think it is something that's a real struggle. I think it's really good to talk about that because I think if there is families listening, you know, remember the fact that you know, yes, you are grieving your son or your daughter, or whatever. But you know, you've got children in the mix of this that are grieving a parent, you still need to be there for them regardless because actually, like you've just said that in your you need your family around you and I think for children, having their family around them, no matter how much therapy or counselling, it has its place but I think there's nothing that beats having the family around you that supports you and makes the child feel safe and makes the child feel that they can get through this.

Will Garrett:

You're right. I'll look back you know what my mum did I mean, she's amazing to do what she did, you know, to keep it not just keep the family, you know, our little family together and you know, nobody in my family have been to university. I was the first one there. My sister, my sister, my sister works in oncology as well now, but yeah, I think with the kids, you've got to it's awful but you need to try and be a bit more selfless when when there's kids involved because I lost half of our family and I'm only speaking of my own experience so my my family now is really odd so my mum's family have stuck with us and the majority of my family now and I don't know anybody else like it you know the majority of my Aunties Uncles they're not blood you know, their mum's friends you know I've got my next one next door neighbours

Andy:

Did they come back intoyou life?

Will Garrett:

I still speak to my nan, my dad side the rest aunties, uncles, little bits and bobs came back. I tried when I got married. I think it was quite a poignant time in your life actually let bygones be bygones. I did start speaking invited some to the to the wedding. We've since fallen out of touch again from no lack of trying from myself, you know, so like I say my nan I still speak with but yeah, my aunties and uncles through various stages. I've tried, I've got to a point now whereby actually it's their loss. But I think I didn't want to as an adult, you know, I think I want to try and be the bigger person and actually for my dads sake as well, you know, I mean, he'd be heartbroken, if he realised that, you know, his blood just left his kids and his wife, you know, I don't know,

Sarah:

it's all this stuff as well, because, you know, your mum knew your dad for a period of his life. But you've got this this whole other life that your dad had, and that his side of the family know about him and stories that they could tell you about him growing up, or, you know, there's a whole part of your history isn't there that's tied with that side of the family that you kind of don't really know about it, what was he like when he was a child?

Will Garrett:

Yeah, I miss out on that and I do. I do miss out on that and, you know, I've just got my mum's perspective from when they met and they met when she was quite young but yeah, I missed out on all that. I was really fortunate though o when half of family vanished, as I say, the majority of my family then weren't blood related, just friends and family that stuck around and you know, had my dad's best friend, he used to come to the football with us and I mean, unfortunately, I lost him a couple of years ago now. But he used to take us come to football, me and my dad, and he must have made a promise to my dad, you know, a few weeks after I was out of hospital, he just turned up and took me to the football, you know, and he turn up week, week after week, after week, he would take me to the football and this carried on, you know, and he used to say to me, you know, at some point, you know, you're gonna, you're gonna want to go with your mates and I was like actually you're my mate and that's my uncle Shaun and he was my dad's best mate, I considered him my best friend as well and he was, you know, he was. I had two best man at my wedding and he was one of my best man at my wedding and my dad's best friend, you know, he was somebody that I often look back at that, you know, not just my dad, but my uncle Shaun as well and think how do with that? You know, at my age, like, you know, my best mate and it to say, I actually want me to do every Saturday, I'm going to, I'm going to focus on these kids and my best friend, you know, and I'm going to make sure he goes on doing what you wanted them to do and it's some, as much as I think my dad side of the families, you know, I look back on disappointment and what they did. Some people, you know, friends really stood up and became family.

Sarah:

Yeah, if there are people because we also get friends of people, and they're like, What can I do to help? And I think what you just said, then, is such a key thing, isn't it? Because that probably meant more to your dad, knowing that he had somebody that would step in, make sure you were okay, you know, and to keep that eye on you and to do what effectively he couldn't and to have somebody that he trusted and that was his friend that would do that for him. Probably gave your dad so much comfort and peace of mind knowing that, even if he couldn't do it, that you were still going to have that positive influence around you.

Will Garrett:

Yeah and I think that was really lucky as well. I mean, my mum's husband now Michael is amazing, as well, he he knew my dad, he him coming in, you know, into our family, you know, it's really tough at no point did he ever was a dad replacements, you know, but he wasn't, you know, really good, solid, male role model that I needed as well, you know, so he was around. So, you know, it's awful, I suppose, when you're going through to think about life afterwards. But you know, there are good people out there that will stand up and do these things are important.

Sarah:

And like you said, life does go on however awful, you know, and however you might want to resist it or however, your life does go on

Will Garrett:

It does and actually, I think people will be okay, you know, your loved ones will be okay. It's no denying, it's going to be rubbish. It's, you know, it's going to be the worst period of your life, it's going to be life defining, life changing. But actually, you know, look at my sister now, she's happily married with my two beautiful nieces. and she's happy. We could have done without losing my dad, you know, there's not a day goes by when I'm doing things that, you know, with his grandkids. I think he'd have loved this, you know, but he's had such a positive impact on my life in just 11 maybe 12 short years, you that's the same with my sister. I think he's still around, he's still spoken about you know but we're alright., We've, you know, we've made, I mean I'm not certain I'd have become a nurse without going through all that. I like to think I do a good job and I think I've got a different perspective on things and it all came through that experience I could have done without.

Sarah:

That seems like a perfect ending for this epsiode but I think that's such a good thing to remind people is something really awful can happen, but you can still go on and move through it and be okay.

Will Garrett:

I think so. I didn't know but life does go on, you know, whatever groundwork you've put in before will never be forgotten. Everything you've done leading up to that moment, will help you kids and your wife, your husband, your loved one. Everything you've been before this will put them in good stead to actually, yes they will grieve and things will be rubbish but actually, they will lead happy lives because of what you've done and there'll be okay.

Sarah:

Thank you so much, really amazing story.

Andy:

I'm tearing up now as well, it's just fantastic to hear that.

Sarah:

And I think that will mean a lot to a lot of parents that are in your dad's situation to know that they may not be around but all that they've done right up to that point will be the foundation stones of their children's life and their future. Thank you very much Will

Andy:

Thanks Will

Will Garrett:

My pleasure, my pleasure to speak to you both.

Sarah:

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