Episode 16 - A Parent's Experience part 2: Looking to the future

In the second part of our interview, Kerry talks about life after treatment. She mentions the services and support that have helped her and also shares that a brain tumour diagnosis can sometimes mean you are not signposted to the right support.

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Transcript

Sarah: 0:10

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 and brain tumour charity about what we're doing to have the harm and double survival. Welcome to this second part of our interview with Kerry, who son Rowan was diagnosed with a brain tumour just 10 weeks old. If you haven't listened to the first episode, you can go back and listen to that now. In this episode, we're going to be continuing with Kerry and Roman story about what life was like once they returned home after treatment. Welcome back, some picking up the story with Kerry 10 years after his initial diagnosis. Rowan obviously survived the surgery, where do things go from that point?

Kerry: 0:58

I think you know, Rowan's got an amazing personality, you know, we've he's got some brain injuries and a dreadful word in many ways, because it suggests some sort of global injury. And that's not true. There are aspects that each person will experience differently with brain injury. And I think the term in itself almost removes that uniqueness, and removes that diversity from the brain's function. So highly diverse in different areas do different jobs, you know, the specialists will even admit to at times, because we don't have answers around brains, and you can be injured in one area and have a set of symptoms, which would suggest injury in another area, which we know with intact, the point being that I'm trying to make is that brains are so very complicated. And when one area is injured, it may well have a knock on effect, but there will be other areas that are less injured or that are uninjured. And for me, I think we are so lucky that we're able to celebrate those areas of growing strengths, the very essence of them, if personality is resilience, have ability to empathise and care. Those are all things to celebrate. But actually they come up the same brain that also has a significant area of injury. And I think, you know, that's where breaking it down in naming things for what we are, which is, you know, the specific areas of injury, which I won't do now, because that's not fair and Ro, and he has a 10 year old. But you know, he is more than those labels, he's much more than that. I think that's really critical to kind of understand, but at the same time, there needs to be a deeper understanding, certainly in education around what a child specific brain injury looks like, and the hidden disability element about what are the remedial things that can be done in order to either rehabilitate because rehabilitation is possible, sometimes, especially in children who maybe already had achieved a milestone, for example, you know, it's easier to rehabilitate a child who, for example, has already learned to speak and then speak well and fluently, then a child who has never been able to speak well and fluently because they're having to learn that skill with an injured brain. Those sorts of pathways weren't already in place before surgery or before tumour. So I think, you know, really bespoke planning and understanding around what the neurology means, you know, really digging deep into the science of neurology is critical if we are to have bespoke care plans or education plans for children, which really hit the mark.

Sarah: 3:30

Now, obviously, we both know that knowledge isn't there and a lot of places and in a lot of education, as much as they try, they don't have that that knowledge, that specialist skill. And he was a parent and having I imagine quite a battle to get that understanding there.

Kerry: 3:49

And it's not just in education, it's in health as well. And I think when a child is discussed in the oncology MDT, the multidisciplinary team the focus is on tumour size, shape and growth and you think behaving itself basically. And I think if the tumour is behaving itself as a low grade tumour often does, then the actual structures around vaccine and really thinking about the location of the tumour and what current neuroscientific research tells us, that's something that is somewhat missing. And that's understandable when we think about oncology being around about saving lives, and creating treatment plans to either save lives or make life as comfortable as possible so that a tumour can be lived with well for as long as possible. So I completely understand but I think we miss out on empowering families to really understand and have words for some of the difficulties that children experienced based upon location. And I think that's where neuroscience if we're not utilising it to its full of impact, we cannot expect that district hospital therapists can know what the targeting with the rehabilitation or recovery programme you know, or schools, or parents themselves, or even the wider community? You know, and I think it's really important that we have that understanding, because that helps to sort of think about the future and start to plan for the future. And then what does the child even when the child's very little, what are they going to need in order to achieve the future, but they and their parent wants for them. And what's realistic to expect?

Sarah: 5:24

Absolutely, and I think that that's, that's key is knows that you've got a very unique approach in that you you don't treat everyone as a sick child, you don't ever sort of talk about and like you said, you don't want to go down the route of saying all the things that Rohan struggles with, because that's not who Rohan is. But there is a certain element that that you have to be as a parent realistic about what safeguarding his future and making sure that being really clear about what that future is going to look like and what you need to do as a parent to give him the best outcomes and also, long term what does that look like?

Kerry: 6:02

Absolutely. And it's really critical to not have a narrative for for Rowan, around just sick child. Because he wasn't. And if it has been really difficult to get it was hard at the time of surgery to get my head around. But I was holding in my arms and incredibly sick child, because actually he wasn't you know, I mean, once we've got this main of symptoms under control, yes, all those other indicators were there, but they weren't impacted on his heart rate is blood pressure. He's bodily functions in terms of, you know, critical bodily functions. And I think we, we have to be really mindful that surgery for him made him a sick child for a couple of weeks, we shifted our focus then to having a disabled baby. And I think the communities out there that focus on disability rights, etc, are usually using words around sort of what the needs are, or how that person identifies with a disability. But very rarely do we equate illness with disability, if that makes sense. If that's not the primary need if somebody is medically stable, Rowan is an ill child, if he has an infection. The only time it's really rare has been significantly ill in those 10 years is when he's been hospitalised for Syria, thier infections which are secondary to his tumour, actually because of the position of it. But those are the times when it's been a very poorly baby, I think for his empowerment and my mental health, really shifting away from that sick child focus is critical. And I think that's something that is a bit hard for people initially to get their heads around. A lot of talk is spoken of, of warriors, and remember, well meaning acquaintances, so always a little fighter, and thinking, Well, if the outcomes had been really sad for right, when would that mean that he wasn't a little fighter? And of course not. And it's a narrative that people will say words that they feel, they need to say something I completely understand that but it almost is credits really, for lack of consciousness, because it's not if look at the drawer, and it's about sort of moving forward from it, there is no fight for everyone. He is a 10 week old baby, we are going to support him with his achievement of milestones, I can't see recovery, because they weren't there in the first place with achievement of milestones as it goes along, whilst being very realistic.

Sarah: 8:28

And is that difficult, because obviously, you've got an older child. And I think brain tumour aside, any parent who says that they don't compare, oh, Joey was this age he was doing this, or he was walking at this age, because it's a natural comparison of where they where they think their child should be. And that goes on through life developmentally, is that difficult when you've already got a child and you can see the differences.

Kerry: 8:53

So as a health visitor I used to say about to parents all the time, however, I will say but it's interesting in my nursing training, we had to go for a week spend in a regular primary school in order to learn what normal looks like so that we would spot abnormal, which is interesting, isn't it? Because then we're making comparisons. And I think that was really important to do. Because how can you spot those very nuanced, subtle differences that start to point to a different understanding of a child if you don't know what to expect in the first place? So I think it was really useful to have those have that awareness of what to expect at certain stages in order to be able to advocate for women and say, I think something else is going on here. I think there's another explanation but you know, yes, we know but x y Zed might be more difficult but the dominant of predominant explanation for some everyone's difficulties was always what was most difficult to people which was his hearing aids, which distracted from the neurological and I think, you know, knowing what is normal and what is not helps to kind have created a conversation around. Let's think about what what the scientific evidence would suggest when a child presents with X, Y or Zed. Now, that, you know really is relatively irrelevant for my child, so what do we need to put in place and that helped us to formulate a better understanding and actually got us to a place where we were finally told when Ron was six what those brain scans were showing beyond the tumour. And that was critical to understand. We had an explanation, we had a bone to pick explanation, but the tissues around the tumour that they were structurally different to the other tissues that weren't disturbed by a tumour. And that then was set is on a different trajectory and opened up different conversations with school, different conversations with health professionals to start to think about, okay, that's visible, but something that can be seen and explains X y&z difficulties. That's not going to change that fair, though. So we need to be thinking much more longer term rather than just milestone to milestone.

Sarah: 11:03

Was there a sense that because he'd had surgery, and he'd been successfully treated for his brain tumour that he's okay, and he should recover? Now? He had a brain tumour and and he has, and as you're going through his development, there's different things coming up that, like you said, you wouldn't know from a terminally ill baby. It's only as he reaches those stages. We know that.

Kerry: 11:25

Absolutely. I mean, for rolling, he always will have a brain tumour because of it only been partially resected. But yes, in terms of the again, it goes back to that professional optimism really, and just, you know, sort of carrying on and I think you know, to be fair, though, health professionals in oncology and neurosurgery will see children with far more devastating and catastrophic outcomes and Rowan it took just contextualise We are delighted as we are to see this happy, robust, largely developing well, child, you know, if that makes sense. But nonetheless, we need to have that injury acknowledged. And I remember speaking to a consultant who had struggled, and this consultant really was very humble in her apology for that struggle, and said about one of the most difficult parts of their job was considering children with brain tumours who maybe were low grade. So in terms of maybe it had all the gene removed, which of course, wasn't rare and story. But for some children, they've had it completely resected to discover years later, that was brain injury. That consultant apologised for that struggle, because it led to a little bit of a blind spot. So it led to me struggling to really be heard. Because it is hard. It's hard when everyone wants the good news story. And it is a good news story in the context of an oncology clinic.

Sarah: 12:51

How has this impacted you and your life

Kerry: 12:54

significantly, some things have been way more challenging. But I think there's obviously a ripple effect around relationships in often the way with the level of trauma, the whole family has experienced, and that's beyond just our immediate family extends out because everybody is affected by the tumour in some way or another. It doesn't just belong within the child. So I think you know, it has brought with it huge challenges. There have been times when I've looked on my career in the last 10 years, and thought, how different would it have been, you know, practical things like financial things like pension contributions have changed when I've had to take time out or reduce hours due to caring responsibilities, where I've had to prioritise my own well being, in order to continue to provide the high levels of support to both my children, that's hard because it's meant taking decisions that have led me to reduce my hours so much, but I've questioned my identity, which you know, as a professional, as well as a mom of whiners, you know, all the other roles that I have in my life as a

Sara: 13:58

carer caring, caring, and you've been a driving force for your son as well, because you've got that health care professional hat on as well. You know, you're very astute at seeing and picking up and noticing where the blind spots are, as you say, that you're having to really beat this drum and this person that you are and it's really coming across, say, you know, in this podcast and the way that you are, you know, so much, you know, so the question is, you know, a you carry as a carer as well as a mother, having time for you what, you know, what do you do for yourself care making sure you're okay. And I

Kerry: 14:37

think that's depends on the stage that we're talking about really forever and because young children demand so much more. One of the biggest things that I did do was take a step back from a role that I had at work which dealt with quite high levels of risk, and it was a job I adored and I was good at and I felt I no longer had the resilience to cope with in case something went wrong. Because when you're dealing with high levels of risk, there's always a chance that something will go wrong. Not through your own fault, but because it's the nature of the beast. And I was in a lovely team at the time. And I remember thinking, I was 19 years into my NHS career, and thinking, I just want you to get to 20, I just want to get to 20 years. And that would be such a milestone since qualifying as a nurse, I didn't get there. And that was really sad for me. And I remember discussing that with my own supervising manager at the time. And that was, that was something else to grieve on top of everything else. And not knowing when the right time would be to go back into that level. You know, when knowing I was kissing goodbye to my uninterrupted pension contributions with, you know, my occupational pension, knowing that when I was ready to come back, I would go to the bottom of the pay scale again, and I would lose all my additional holidays that had improved due to long service. And those might seem small things, but they were such a big part of being in my professional identity and my professional role. But no longer could I commit to that, at a time when it was very clear, because we were no longer living year by year with Rowan, we'd had that clear on picking up a scan, which said, this is the structural damage. We know. Thank you for asking us about what is the structural damage we haven't told you about before. We're now going to take a look at that. And this is a structural damage. We're no longer just talking about Zuma. And that to me was okay, this carrying rover I have juggled it with that point. It was 2018. So it was seven years I took off that role. I no longer had that Fake hope of resolution, if that makes sense. This was long, long term. This was I needed to take time out. So, you know, I stuck with a very part time role claim benefits, and I claimed carers allowance in order to keep afloat. You know, there was concerns around my mortgage repayments, you know, I was worried about the impact that this decision would have. But I realised it was a decision that needed to be made. And I needed to ask for help really, you know, sort of practical help, which was hard, it was really hard because I hadn't used the benefit system. Beyond you know, the disability benefits, which you know, help to sustain kind of the additional costs that come with caring for someone with a disability, you know, it's expensive,

Sara: 17:23

it's expensive, when you've got somebody who's disabled or needing more support, you know,

Kerry: 17:28

so you know, to then have to kind of like, sit with that, okay, I'm a carer on carers allowance, I now have to be very careful. If I'm offered extra work, I can't go over that weekly threshold of income. And making those very conscious choices was difficult. It was unpleasant. I've always been independent financially, I hated it. And you know, I was very sensitive to stigma when there was news articles or social media article about benefit claimants with one of them. And what did that do to my esteem? And I think unbalanced, it was hard. And going back to your question, it really was about self care. It was about saying, I don't want to get to a point of having my resilience tested at work, and not having enough to give at home. So I need to just drop back and let go a bit and both social consequences and financial consequences. I just have to trust that all will be well with that. Eventually, it wasn't there was a ball to pick up a few years later and increase the pace of work again, and and stop that carers allowance. But it was hard. So what

Sara: 18:31

do you do carry? Because it's all consuming being that healthcare professional and a caring mother in all that I've been hearing. It's a lot. It's all come encompassing. So what does Carrie do? So I think

Kerry: 18:46

I am so lucky to have created a very good support network, and my network are just amazing individuals. Lots of them have children with additional needs. And that's been really important to be able to sound out ideas. And I think that goes back to one of my comments I made earlier about looking more globally at ruins needs rather than just through the brain tumour lens. And I think there are so many commonalities. I won't go into this education and the issues there now, but you know, we are in the same boat when it comes to managing paperwork when it comes to supporting our children with special needs through the education, health care planning, assessments and reviewing system. We understand what it's like to have to say no to social events that are more tricky to manage. Because there's sensory needs, for example, or that family meal out and a lunchtime, you know, at Sunday carvery might be more tricky or challenging, but it would be for other families. We get that and I think that for me about having that support around me is really important. I think being the best co parent I can be and vice versa. Rowan's dad is an amazing In co parenting, that's around self care and really investing in that co parenting relationship has provided opportunity for at respite grades for support for that love and care to continue, really, and recognising my own strengths has been important. And being able to put those strengths to good use. When I kind of was questioning my role and identity, I wondered about what other things, what transferable skills I might have? Or could I pick up sort of piecemeal bits of work or all sorts of different things, and you start to think more broadly about those transferable skills and starting to think about as well what games have I had from being a carer, and how has that impacted positively on other areas of my life. So rather than seeing it had been just a challenge, but also seeing it as being adding a real richness and a wealth to other experiences in my life and valuing it rather than fighting it, if that makes sense. So embracing that as part of just the journey we're on and knowing that the long journey things like I remember asking my mum or Ron was young, I'm thinking he would be about three or four, you know, and saying, I really want you to get a lasting power of attorney sorted out, I really don't want to end up in a situation of maybe when Rowan's an older teenager supporting him repeat budgeting and finances, and also having to worry about yours. You know, if you're not able to do that for yourself, mom, again, it comes down to having a trajectory, having something to work to, it doesn't matter that it's not the fantasy or whatever, when you're carrying your baby you kind of hoped for, but being able to accept it, and then commit to it has been freeing in many ways, because it's enabled me to think, Okay, well, this might be problematic in the future. You know, like you're saying, with a parent who's getting older, what can I do now whilst they're fit and well, and whilst things are stable, to sort of future proof a bit and give that future carry a little bit of a break and rest by you know, because I'm not having to worry in the future about that additional stress. That's

Sara: 22:06

wonderful, caring really, really sound, I think, for anybody listening to that, you know, future proofing for you or for themselves as well. So I've always you it's not that knee jerk one crisis after another which can very easily happen for carers. I think we all know that most definitely,

Kerry: 22:23

definitely. And I think you know, but been organised, planning, just useful things like writing things down, not holding it all in your head, knowing that you've got multiple plates spinning, but you can gently put some of them down for a little while. And really thinking, to me, imagery is so important, and thinking in images, so you know, the plates spinning while I'm when I'm feeling overwhelmed. You can't put all the plates down, it's impossible as a carer, and to do so actually would potentially lead to really neglectful or abusive situations occurring if a little person is relying on you. So you have to prioritise and think what what play can be put down gently for now, and then can be picked up again, I don't know if you remember. But those awful little square games that we used to have as children, which were made out of plastic tiles, and there was one tile missing, which enabled you to rearrange a picture, I definitely think that, you know, my life has been about accepting. But that picture will need rearranging lots of times, and it might be one tile at a time that gets moved. But it will make a new picture. And that new picture might look a bit different to the one I set out with. But it will be my picture.

Sarah: 23:31

That's such a good analogy, isn't it that it's never going to be fixed, there will always be challenges. And it's about putting things in place. And also, knowing that it's not a weakness to ask for help and being able to reach out, like you said, if you don't have an immediate support network of family, because I know that there are people say, Well, I don't have grandparents that can help. But it's going and finding, like you said those other families that are in similar situation that that don't have brain tumours, but have children with brain injuries and stuff that you can draw on each other for support because there will be times when you're just tired or you've got a cold or you're just not feeling well, or your other child is got stuff going on that you need to deal with that maybe you just need to reach out and say I need a bit of hand here and having people who understand that.

Kerry: 24:21

Oh, absolutely. And I think going back to what you said about almost like he was suggesting about respite but the downside of that of course is that you know everybody it helps to contextualise what you're experiencing is normal. You have families are also experiencing that some families will be experiencing it far worse because their children won't be medically stable or the children will have behaviours that challenge and I think that helps because there is a real risk of becoming tunnel visioned and with a real risk of seeing your own difficulties as being far worse than everybody else's think but at least for a boring conversation and also isolated from other people because he's Get what binds you as a commonality. And also, I have a lot to be thankful for. I'm not going to say how lucky we have been in a way that I used to like a mantra. But what I will say is we do have a lot to be thankful for, you know, it's pretty bad luck having a brain tumour of any type out what we ended up with, I'm really glad that Rohan was able to cope so well with that surgery, and that we've been resourced and been able to provide, you know, the journey for him, but he's been on and so he's living his best life is undoubted, but rarely is living his best life, he is absolutely full of fun and personality and just wisdom and skill equally, you know, we recognise the impact that's had on Jack Ryan's Big Brother, it would be it would be silly to say that the siblings have a perfect relationship. But no siblings do have a perfect relationship, you know, as to a different story. But it is ours. Is there is it what do you do for yourself. And I think sometimes both very practical things around making sure you prioritise form filling. So we have a very strange short breaks budget system in the local authority where I work in that you don't automatically get notified. Even if you've qualified for short breaks before, you have to keep your eye on the ball a bit. One of the ways of doing that is by joining a local forum Facebook forum, you can pick and choose the messages or the posts that you don't want to be reading. But at the same time it you get nuggets of information about what the local authorities priorities are, what their commitment is to children with disabilities or additional need. And you also get things like there is a deadline for a short break budgets application, not putting both form filling times off is really important, because that couple of 100 quid might be what pays for your child to go off and do an activity that they wouldn't ordinarily do. Putting it off as a means of self preservation as a means of, well, I'm going to make time for me now by having a bath and not filling that form. But knock on effect, in the long run, is that you don't have all those lovely bubble baths later on when you could have even longer in them because the child's on a play scheme, or that you're living with guilt around not spending enough time with or in my case, his older child, when actually had to fill that form would have used a play scheme. And you know about really created that time prioritising that need for those short term solutions to I'm tired, I'll put off till tomorrow, if that becomes a pattern, it means that both kind of bigger impacts break and maybe not achieved. So I think for me, it's about not putting off till tomorrow, what could be done today and that sort of pushing for that extra 510 minutes to be something means that have less stress in the long term?

Sara: 27:48

Are you involved with your local carers centre carry?

Kerry: 27:52

Well, I made contact with local carers centre some time ago when I was going on to carers allowance. There was a hiatus in communication. And I thought I could either prioritise pushing for that and making sure the person means we're back or I can get on and I chose at that moment in time to get on with it. Different carers resources have less time and resource than others I've been staffing issues can be problematic. Again, it's about I could have just got angry and moaned. And that's what I mean about picking and choosing what you listen to or what you what posts you read on a local forum for children of special needs, because we can get very stuck. And we can end up with a narrative that isn't necessarily the most mentally healthy, which is around nobody wants to help. Most organisations absolutely do want to help but struggle some time for staffing and funding and it's not personal. And if it's really important, just keep retrying but for me at that moment in time, it wasn't I realised that I could lean into my network I didn't need to

Sara: 28:53

good for you know, it's good. And I think it depends because you know, I'm involved with or have been as a carer with different charities offered support for carers, so even though it's maybe not the carers centre, but it might be a special needs, particular charity, especially charity, but they offer support for carers as well, which is always great. It's good to put the feelers out and see what else is out there, isn't it?

Kerry: 29:15

And I think it was probably around that time but I thought okay, well the care is centre isn't resourced at the moment, I'm going to try and knock on another door. And that's what I ended up doing ended up accessing a really well, there was two charities they ended are accessing. One was an amazing local children's cancer charity, who provided support at that time where we cluesive of Rowan's needs despite it not being a World Health Organisation classified a cancerous tumour, but he was included within their remit at that time. And they, by pushing on that door, it opened up huge amounts of support for the children and the family. I do remember and I think this is probably again another story for another time, really is around that whole feeling very guilty. And that sort of Survivor syndrome, of not wanting to access cancer charities. We've had their emails and letters through the post, etc, promoting the charity and I honestly thought it was a fundraising driver didn't realise it was actually aimed at us to outreach us. And I remember thinking sat with those children who were clearly recovering or currently on chemo treatment. We don't deserve to be there. And that was really, really hard. And in part because, you know, we'd been told things were benign, we fought but it was just weird that we were put into an oncology clinic we didn't fit better and some of the parents would receive devastating news and we would go out with same as usual news the tumour hadn't grown grown marginally, so nothing more was required. Having vote here in both moms put me in my place, and telling me because they could see they can see Reverend Sneed, you know, you do get to a point in time where you stopped seeing the need, because it's so not it's your normal. And I think I remember at that time, one of the moms in particular who became a friend and she just said, you know, my daughter has leukaemia, she's in remission from leukaemia, her school outcomes, her her work prospects, etc, they may well look very different to your child, and yet your child hasn't been diagnosed with cancer and you haven't gone through the horrors of chemotherapy, etc. But I am here alongside you and with you. Despite that, because our journeys are different, but there are health related but it was really powerful to have that validation. So knocking on my door was useful, and my charity also signposted me to the brain tumour charity. And that was hugely important in my own acceptance of the value of our journey. Because all of a sudden, I realised, I guess that that exert experiences I had could be put to really valuable good uses. The Facebook group for parent carers on the brain tumour charity Facebook site was just amazing. I remember that being really critical turning point in my journey, and embracing our journey and no longer feeling like I've lost so much with that changing career, etc. But actually, there was so much richness from it, and I was a better work, I would be a better worker, I always what I already was, because I understood the challenges that families faced in more detail, because I've had that lived experience, and wasn't the same as a lot of the families. But I had that lived experience of what it's like to have challenges. I understood what the stigma of living off benefits was, all sorts of things had that real benefit, you know, as a better advocate for families who were in crisis, for whatever reason, it started to make sense. And I felt like I was useful. And I could put the experiences of our family to really positive use in a way, but I didn't realise what's possible. So that was really good self care, you're not hearing me fair on lots of bubble baths, or I read a favourite book or a candle. Those weren't the things that were most useful to me, what was useful was, was really accepting that this was, how it was, and committing to whatever came along, emotion wise, thought wise, it just is what it is. And there is strength in me and the network around me and the co parenting that will carry us through this. And also, it was such useful to my children, they are fabulous.

Sarah: 33:28

So good here, because I think people do hear self care. And they immediately do think that it's a certain thing. And actually, self care can be really different for different people. And, you know, a bubble bath wouldn't do it for you. You don't have to limit it to those things. And it's about doing the things that actually work for you and make your life better and make you feel better emotionally, mentally, physically, psychologically, that might look very different to a group of 10 people, they might all have very different views of what self care is, and that that's fine.

Kerry: 34:01

Yeah, and I think for me, don't get me wrong. If I'm in tears about something, I will deploy some of both more traditional self care methods, but very, very immediate and short term relief needed some some unpleasant emotions. It doesn't support my resilience long term. And I think that's the difference really, to me really investing in that long term resilience, that ability to ride those waves is really important because they are waves they will peter out. I mean, there'll be never one calm, and that will also peter out and learning to ride the waves is really important.

Sarah: 34:35

Really, really great talking to you. Is there anything before we wrap up to Sarah, do you have any thing you want to

Sara: 34:43

know I think it's been a lightning actually carry because you're very different person that we've heard on the podcast being a healthcare professional, but the drive that you have the heart that you have in your journey and pushing forward, recognising you know like you say the blind spots and too Keep going as you want, we have to that's what we do, isn't it? I mean life is to be lived. But like you say, it's not about being lucky. But being thankful empowering yourself, I think is what I'm feeling overall with you, you're you really do empower yourself and your family to make the most of what you do have

Kerry: 35:17

very something around what we do to people who have had poorly child, we keep them stuck. We keep them victimised because we take away their identity. They don't know when it's okay to live. Going on disability, living allowance is really hard. Because actually, how do you celebrate your child's achievements, when in the back of your mind is stupid claiming DLA if this one day they managed to walk further than what we told we talked about on the form? Or do you know what I mean? And it's almost like, in necessity to fight and prove something which holds people back in victim hard.

Sara: 35:52

It doesn't, you know, I looked at life was to be lived. You know, when Neil was diagnosed, I said, you know, stuff, the cancer, let's make the most of what we have. You know, I know, my job is completely different, but it's making the most of what you have. And there's always something to be thankful for. And actually, if you're feeling I do this at the moment, when it's been quite stressful when I get into bed, I say, right. What am I thankful for today, and there's always a real a ream of things to be thankful for. Because there is there's still joy in every day. There really is. And it's making the most of that.

Kerry: 36:26

Yeah. But we all come from it with a different personality in the first place. Don't wait. Oh, yeah.

Sarah: 36:31

Okay. Well, I think we'll wrap up now. And thank you very much, Carrie. It's been amazing talking to you. And it's been so insightful to hear your story and how you've come through it and your attitude is amazing. Like you said, you've got your professional hat, which has given you some really great insight into what's going on. But from a parent's perspective, how you've navigated those waters has been really insightful.

Kerry: 36:58

Well, hopefully, hopefully, one parent might listen to it and just feel a bit less lost.

Sara: 37:05

Absolutely great information. Really wonderful. Thank you, Carrie.

Kerry: 37:09

Oh, no worries. It was a pleasure. Thank you.

Sarah: 37:12

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