Episode 56 - Rehabilitation for brain tumours

In this episode, we talk to Anya Jones and Kaz Melvin about their experiences of rehabilitation.  Anya was diagnosed with a brain tumour and needed extensive rehabilitation after her diagnosis and treatment whilst Kaz has both personal and professional experience of brain tumours and rehab.  She is a physiotherapist but also supported her sister Ria who sadly died from a glioblastoma in 2021.

Together Anya and Kaz have worked with the charity to create some resources to help people understand how rehab could help them and the sort of help available.  You can find out more here

If you would like to be involved in the work Kaz and Anya are doing you can email  involvement@thebraintumourcharity.org

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Transcript

Unknown: 0:28

Music.

Sarah: 0:38

Welcome to Let's Talk about brain tumors. The podcast where we'll be talking to people who've been affected by a brain tumor diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates on The Brain Tumour Charity about what we're doing to halve the harm and double survival. Welcome to Let's Talk about brain tumors. In this episode, we're going to be talking to Kaz and Anya about rehab for brain tumours, using their personal experiences of brain tumours in rehab. They've been involved in a rehab project as part of their role as involvement champions. So just tell us a little bit about yourselves and how you came to even be part of the project at all. So Anya, perhaps I can start with you. Could you tell us a little bit about yourself?

Unknown: 1:20

Yeah of course. I'm Anya, I'm 51 I'm from Kent. I live here with my young family. Which one is furry? I've got a dog and a daughter who is now 11, but she was four when I was diagnosed with the brain tumour back in 2017 the tumour I was diagnosed with is called an acoustic neuroma. It sits on your kind of balance and hearing nerve, you know, that's the area of the brain it's in. It's a benign tumor, which is good because it means it's much less likely to come back and kind of metastasise. But as the saying goes, benign isn't always fine. Mine was very large tumour located in a dangerous part of my brain, sitting on my brainstem, so there were no options for me other than to go into surgery and have my brain tumour removed, which I did back so that's six years ago. Now. I had a successful surgery, but had a lot of complications and After Effects of of that, which we'll get into today. So that's me. So I live with the brain tumour. Have kind of survived the brain tumour, and as part of that have had a big rehabilitation journey, and like Kaz, became an involvement champion for a couple of years, working across various parts of the charity, including the strategy getting involved to try and make a change for the brain tumour community.

Sarah: 2:44

Perfect. Thanks so much, Anya. I'm going to now head over to Kaz. This is your second time on the podcast. You actually did an episode quite a while ago about losing your sister.

Unknown: 2:55

Yes, we did an episode on sibling grief. So that is part of the reason why I'm here today. I'm working for The Brain Tumour Charity. I am here today on a two sided coin today. So I'm here in a professional sense and a personal sense. That's my connection to brain tumours. So on the professional side, I'm a neurological physiotherapist. So I worked in the NHS for just over 10 years, and now working privately, I set up my own practice down here in Cornwall in the southwest. So I visit people in their own homes to carry out neuro rehabilitation. So I visit people with all types of neurological conditions, so anything to do with the brain or spinal cord, such as stroke, MS, Parkinson's, but I also do visit people living with and living with the effects of brain tumours. So I carry out daily rehab for that type of group of people in the community. So here today, I'm here in more so professional sense, but I do have a personal connection to brain tumours. My younger sister Ria was diagnosed with a grade four glioblastoma in 2018 when she was aged 23 unlike Anya, hers was a malignant tumour. It's quite aggressive, so there's not much that can be done. It's incurable. And she went through all of the available standardised NHS treatments, such as, you know, surgeries, craniotomies, radiotherapy and chemotherapy. And we also fundraised to gain her access to immunotherapy treatment abroad, privately, but unfortunately, after all those treatments, the tumour returned, and she died in August 2021 aged 25 so I'm acutely aware of the impact of of brain tumours on a person's life first hand and the lives of those around them, but also aware of what rehabilitation can do for those people within and through every stage of that journey. So hopefully, can bring both sides to our conversation today in terms of professional and personal. So linking in with Anya with her personal story in terms of the project, as Anya said, we were working as involvement champions together, and there just became a kind of acknowledgement of a gap in The Brain Tumour Charity information that was on the website in terms of rehabilitation. And both Anya and I were very aware that. This is a massive side of the brain tumour journey that's not really being talked about. So we've got a little working group together, and yes, this is our project. So we're working on trying to increase the information and support available to the brain tumour community through the website, firstly. So our first phase, so we talk being talked about today, and our next phase is going to be more around campaigning and creating solutions for change so that rehabilitation services are more widely and equally available for brain tumour patients in the in the UK, which is a big, big project, but we're starting off small, and this is our first phase that we're going to talk about today.

Sarah: 6:08

It's a big thing, because we hear all the time, it's actually really quite poor in terms of when you consider other disease areas such as stroke and other areas like that, getting referred and getting the right rehabilitation. It's another battle in itself, isn't it?

Unknown: 6:24

Yeah, and that's going to be kind of the long, a long term change that we're hoping to get behind with the help of the charity, but I think today, we're trying to give people just a little bit of information and knowledge and to help empower them now in the short term, and maybe just give them a little bit more control over what rehabilitation they can be doing themselves. If they don't have access to these services, or if maybe they're on a waiting list for these services, then there are things that people can be doing to have an effect on on their lives. So hopefully we can share that today.

Andy: 6:56

From a personal perspective myself, I had zero rehabilitation, so after my surgery, your left off to yourself effectively and had nothing. So I'm I'm kind of seven years into my journey, but I'm going to be interested to see what you got to say as well, from a personal perspective.

Unknown: 7:14

Yeah unfortunately, that's not an uncommon story. Andy, it's it's very hard, as Kaz says, to access and it's very, very it kind of really differs from where you even live in the country as to what community rehabilitation services are within reach, so it definitely a challenge, which is why the next phase is to try and look at how we can join across the neurological community to campaign for better outcomes and better access to care pathways

Sarah: 7:42

when we talk about rehabilitation for brain tumours, can you perhaps explain a little bit about what that actually means, what that actually entails, because it's quite a big, it's quite a big, all encompassing and quite intimidating kind of phrase to even think about what that where to even start, and what that actually is.

Unknown: 8:02

Yeah, I think, I think you're right, Sarah. And I guess if I speak first from a personal perspective, it is really about getting working to get the aspects of your life back that are important to you. So it can be what seemingly small things, or the things that we take for granted, like communicating with others, going for a walk in your favorite place, being able to walk out the door without you know somebody accompanying you. So that sense of independence. It's really about regaining or maintaining a part of your life that has either been lost or is at risk of being lost. Unfortunately, because of brain tumours and their location and the impacts they can have in the brain can affect, you know, so many areas that we all take for granted, and I certainly did before my my brain tumour. But so it's really about it's very individual. And it can be, it can be small, or it can be big, in terms of just people, what, what the patient wants to focus on, and what's important to them. I'll hand to Kaz, because there's a, there's a far more kind of involved professional explanation. I think there's a perfect explanation Anya like that is, you know, the personal element of it and the aspects of your life that you're trying to regain is really important part of rehab. I like to describe it to patients as the process of recovering or adjusting to the changes that result from having a brain tumour so that can be, you know, the actual effects of the tumour itself, or it can be the effects from the treatment you have, you know, such as chemotherapy, radiotherapy, they can have really big changes on your brain and your body. So I think that it's kind of two parts there, the recovering, which is more towards trying to get back to the person you were, and the adjustment side is actually accepting that sometimes that is not completely possible in the way that you were doing it before, but there are ways to to do these, you know, tasks and activities that you want to return to, but it might be that you have to do them in different ways. And, you know, that's the process of rehab is finding out those ways, and that can involve doing specific exercises or activities exercises and repeating these over time. So helpful to know that your brain, you know, even after damage, it can relearn. So either it can recover in the area that has been. Damaged nerves can regrow, and you know, that area can recover. Or the brain is pretty clever. It can actually other parts of the brain can learn to take over the activity and the process and of that area of the brain that has been damaged. So it is pretty clever that way, but it has to be guided. It doesn't sometimes, doesn't just happen automatically. And it's important to know that you can improve, can improve your quality of life and independence, but you might not get back to 100% of you know what you were doing and who you were before these changes happen. I think it's really important at this point to say that this rehabilitation we're talking about can happen and can be done at any stage in the brain tumour journey. So people just think about they think about rehab. Maybe think, oh, just after surgery, when I've got a lot of deficits in whatever way from the surgery or from the tumor removal, that's when I do my rehab, and then it's done. But actually, from my clinical experience, can be at any point in the journey. So with my sister and with my with my patients that I work with, I work with them at any any point. So even before they're going to have their surgery, to try and get them up to optimal function so they recover a bit quicker and even after any changes in conditions. So if they've had a seizure, and you know, there's some weakness that occurs after the seizure, then you can rehab back to what we call your baseline, where you were before your seizure after surgeries. That's an obvious one. But even you know, if you are palliative and approaching the end of your life, there can be rehabilitation that can be done at that point as well. And I experienced that and did that with my sister, so you can actually optimize independence at any point of the journey. I think that's really important to get across, that it's not just at this single point. It can be, you know, for years, coming back to it at different points.

Sarah: 12:28

I think that's really a really, just wanted to interrupt that, because I think that's a really fascinating point. Because I think a lot of people, because they're not offered rehab, maybe initially that it may be six months a year, two years down the line, and they're like, is it too late? And from what you're saying, it's like, no, it's never too late. If you haven't had the rehab, maybe offered it, and you've had to, you know, wait for a long time that that doesn't mean that you still can't make improvements or benefit from rehab.

Unknown: 12:56

Yeah, and I think our restrictions at the moment is that the services aren't there for that to happen throughout the journey. But you know, rehab can be formal in the way that you know, professionals that we're going to talk about later, that can give you formal rehabilitation with their experience and qualifications, but actually you can do it informally yourself as a type of rehabilitation at home. It doesn't just have to be going to a rehab unit or going to an outpatient clinic or anything like that. You know, you can do your own rehabilitation. And I think people just think of it as I can waiting for the physio to come. But actually, is there things that you can be doing in between those times to help yourself? And I think there are many things you can do, so hopefully we can get get to that later.

Andy: 13:44

Can I just say as well, from my perspective, it's really important that point about the fact that rehab isn't just a train you get on your or you make you miss out on you can do it anytime afterwards, which I didn't realise. I kind of thought, well, if you didn't have rehab early, you kind of missed the boat. So that's really important. And the other one for me is the adjustment piece is really important as well. It's not about the physical aspects that you're trying to recover. It's, it's the fact that you have to adjust. Because I know for myself and others, we're different than we were before our diagnosis, treatment and initial recovery. And it took me a couple of years to realise that and stop beating myself up for not being able to do what I could do, but actually try and make the best of what I've got as a sort of Andy mark two, almost, and it's, it's, I think it's also important for people to realise that, that it's, don't beat yourself up for not being able to do stuff. It's, let's make the best of what your what you have left, almost, and what your new, your new sort of person is.

Unknown: 14:44

Yeah I would really echo that Andy, and it's been a really big part of my journey still is six years on. I'm still learning my limits, if you like, or adjusting to my new realities, and I I still do rehab informally every week, so I have to maintain the pathways that I rebuilt with the help of physios. And so it's kind of an onward journey, and it's still day to day for me, but that kind of psychological and emotional adjustment to and I call myself, me mark two, as well. So that's quite nice that someone else does. But you know that new version of you and actually becoming comfortable with with that new identity you have, and you know you're still the same person, but there are differences, and it's a hard. Line to tread, I think, but it's also can be a really big part of rehabilitation support, working with psychological support as well, which not everybody gets access to, whether that's a formal neuropsychologist or a counselor, but I think that's a huge part of the recovery. Yeah, I agree with that, with Andy and Anya there, because I from what I see with with my patients, and what my sister went through, the actual pro the processing of of who you are now is a big part of, you know, the journey, the journey itself. But I think rehabilitation can actually help you discover that, discover who you are again, and because it also gives you a sense of purpose and something to focus on. And when you learn more about what your your body, your brain can do now, you get to know yourself a bit more. And you know, as you say, you get to know that mark two version of yourself, and that, I think, helps with acceptance of letting go of that past self, and that's a process of grief in itself, isn't it, that loss of self, of who you were before, and accepting this new self that you are. And I think rehab can can help with that on an emotional level as well as a practical level as well. Yeah, I'd agree. Is because it brings a positive in I think it gives, it gives that focus, of, of, yeah, I found it. It was hard, but a very positive, overwhelmingly positive experience, of of actually pushing myself, not pushing myself, but but exploring what, what my new, my new self, was capable of, and getting a new respect for my brain. I think it

Andy: 17:04

gives you hope, isn't it? It's that word hope so that you however you are, there's still hope you can improve. Yeah, that's getting to know yourself better, or getting to make the better of it. There's still hope that things will get better.

Sarah: 17:17

What symptoms can rehabiliatation help with? Because there's so many ways that people are affected. Is it just physical? Is it just kind of like, you know, if somebody's got one sided weakness, or, you know, what areas can it help

Unknown: 17:30

You know, as you say, this is very far reaching with? because of the capacities of our brain, you know. And think about how many functions our brain has. It depends completely the location, you know, of the tumor and what effect the treatment has had on the brain, because each area of our brain is responsible for different functions. So a useful way to group them, as you say, physical is the most obvious one, because you can see that, and people always come to the physical first, because that's more obvious. So I can describe that as changes in body movements, or your physical ability to carry out your daily tasks. So the things that I work with on a daily basis, changes in walking balance, using your arm, grasping objects, but also things like pain and fatigue. Changes in vision, speech, language, swallowing, all the physical things that we have to deal with and that interrupts your daily activities. But also there could be cognitive effects as well, from from the tumor or the treatment. So that's your your thinking skills. So could be changes in your memory, your concentration, your problem solving, skills, planning, decision making, all those things that we do automatically, they can be affected, but that also can be worked on and can be improved upon, or even kind of taught, management strategies, coping strategies, to deal with them and actually get to know them a little bit more. The last one, I'd say, would be grouped into emotional or psychological. So that's your emotions and how you behave. So that could be changes in personality, mood swings, low mood anxiety, even irritability or aggression, confusion is a big one as well. And that can, that can be quite common, especially like acutely, post surgery or post treatment, and even motivation and loss of inhibition, which is, you know, loss of that filter that we normally have. And they're also things that can be, can be worked on. So that's a lot of things, and some with a brain tumour may have trouble with maybe one specific area depending on you know, the size of the tumour and where it is, but also they can have a combination of lots of these symptoms. And that's why brain tumour rehabilitation is very unique, because every person is very, very different, and every you know symptom can be very different as well. So the rehab has to be quite bespoke and personalised to the person, rather than very generalised like it can be in other conditions.

Sarah: 19:58

And I think that's such a good point in the sense that I think a lot of people do just think of the physical side of things, but those things like memory and fatigue and all of those things, I don't think necessarily people think of rehab when they think of their memory, for example, or when they think of some of those, like processing things. I don't necessarily think people think, Oh, I maybe could get rehab for that. I think they think, I've got weakness in my arm. I can get rehab for that, but not necessarily some of the other ways they've been affected.

Unknown: 20:28

Yeah and I get I can pick up on that because I was a brain tumour survivor that did have. I had a lot of physical deficits, if you like, and that's a medical term. We're not saying that in a bad way, but areas of my brain that weren't functioning as they were before, but I also had a lot of other rehabilitation needs and symptoms and some of the most more unusual ones, I guess swallowing was one. So I had rehabilitation with a speech and language therapist, because I lost my ability to swallow after surgery, and then had to learn again and my and it took about six months for me to be able to swallow safely. And again, that's that's something that that I would never have thought was a rehabilitation piece, the same as with I had slurred speech because of the area of my brain that that had been affected, and again, that that's probably more obvious, but that was a speech and language therapist, and I had a lot of psychological rehabilitation as well. Had a lot of anxiety, had problems with communication because of my slurred speech and facial palsy, which meant that I couldn't actually form words properly, and so for me connecting and the inability to read to my daughter in bedtime stories, to actually hold a conversation, that resulted in a lot of anxiety and not actually being able to see people and kind of communicate, so I had a lot of rehabilitation to actually help me live again, if that makes sense. And quality of life is, I think what this really comes down to is, is living with your values, and sometimes that can really disappear in periods of quite acute difficulty.

Andy: 22:02

So that's really important as well, the non physical side. Because I think with physical sides in with the NHS there. I say it's easier to see something and and say, right, let's put a plan in place. Um, I've spoken to many people that have got sort of deficits on the psychological side, as we've talked about, but because it's not visible, it just doesn't get dealt with. And I know from, I know from here, from for many others, it'll be like a heaven sent. Wow, there's someone now going to focus on me not having to work out why I can't do things that I did before, whether it's memory loss, loss of filter, all those sorts of things that you think you're going through on your own, and what you're doing is hopefully going to put in place something that says to all those people that haven't got the physical deficits, we recognize you have got deficits. And here's here's some techniques and whatever we can do to help you sort of cope with that and live with it better.

Unknown: 22:53

Yeah, you're right. And is that cognitive as well and fatigue that you know that can often stay with people for a long time, whether it be processing, as you say, memory, I found multitasking and my bandwidth was just completely different post surgery. And there is, there is cognitive support out there, but it's an area that doesn't get as much kind of air time, if you like. So I think it's really important point Andy that, you know, people can be years on struggling, but, you know, finding things challenging and to Kaz's earlier point, it's actually never too late. You can do it anytime. Just because it's a number of years post treatment doesn't mean that the rehabilitation won't sort of help improve that quality of life.

Sarah: 23:34

Yeah, and you've mentioned a little bit, but what kind of healthcare professionals are we talking about when we talk about rehab? Who are these magical people that can help people?

Unknown: 23:45

Yeah, that we have mentioned a few of them, haven't we going along? So yeah, we can, we can go through them. So there obviously are various professionals that can help with the different aspects of rehab, and they're obviously specialized in different areas depending on what the symptoms are. And normally they can form part of your MDT or multidisciplinary team, and and this kind of team, by themselves, can also be referred to as AHPS, allied health professionals, the ones that participate more in the rehabilitation side, and, you know, getting you back to where you were. So the main ones, most people know physiotherapist, and as we, as we said, I think that's probably because the physical symptoms are so obvious. So I think that's why that that link has come up through a physiotherapist, and they help with movement strength, so lots of kind of walking, re education, balance, rehab. So it normally involves exercises, and trying to kind of involve and get those exercises into your daily routine, in a way, and then you got an occupational therapist, sometimes shortened to an OT, and they're the ones that can really help you with regaining some independence with your daily activities. So trying to look at your, you know, washing and dressing, your meal preparation, and then also going away from daily tasks to anything that you want to get back to. So anything in terms of your hobbies, your occupation, if you want to go back to work, looking at what is limiting you, getting back to those and then figuring out, okay, can you return back to how you're doing before? If not, can we do it another way? But also, OTs also can help with the cognitive side of things. So they are trained in cognitive rehabilitation. So in terms of Singleton. Like the memory and things. They are certain rehabilitation exercises that people can try to try and improve that side of things. And also they can advise on aids and assistive equipment within the home or wherever you live. So that's really, really useful, because in the in the short term or the long term, that can really help with with independence and speech and language therapist is another one as well that Anya mentioned. They do kind of two prongs, so communication, so the actual speech and language side of things, and swallowing as well. So that invite would involve exercising and also advising on the safest types of food or drink if you're you've got unsafe swallow, and then also alternative methods of feeding, if needed. They can also advise on that the other two are less common. I'd say there are neuropsychologists that Andy mentioned. So they also deal with cognitive side of things as well, also behavioral changes as well. So they do psychological testing education, and also advise on on treatment plans in terms of you know how to look into that a little bit further and delve it deeper. And the last one is a dietitian. And so people might not have thought of this as a typical rehabilitation professional, but actually, nutrition plays a huge part in rehab, because if you don't get the right nutrition, then you're not getting the right amount of energy to actually improve and get back to your life. So they provide nutrition plans and education on healthy, balanced diets. And they also, together with the Speech and Language Therapists, they explore alternative ways of supporting nutrition. So like, if you're unable to swallow safely, then they can advise on how to get your nutrition in other ways. So there's, there's a lot of professionals there, and you know, it's important to know what they each do as to what symptoms you're struggling with, because you might be able to link the two, you know, if you think actually, I am having problem with my with my swallowing, you know, okay, as a speech and language therapist, and I think that gives you a little bit of empowerment in terms of, if you know you need some help, you can actually go armed with the knowledge of who you need and where you need referring to. And I think that is really powerful in, you know, coming to a clinic appointment with your CNS or consultant or oncologist or GP, even knowing who you need to be referred to, it really kind of pushes your your own kind of journey. Just gives you that little bit of control. Rather than going and saying, I'm struggling with all these things, or even not knowing that you can get help with these things, if you know help with them, then you can, you know, approach someone and be proactive in in getting that help, and I think that that's important to know. And we've got a section on our web page about these different healthcare professionals to look at as well

Sarah: 28:16

and we will link to the web page in the show notes so people can find it, because you touched on it there that people can refer themselves. They don't have to wait until their medical team sort of says to them, oh, you know, we're referring you for speech and language therapy. You can actually request that. You can identify, I'm struggling with this area. You can actually say, can you refer me to neuropsychologist, for example, that and I've been able to identify. Yes, these are things that, these are issues that I'm having, and yes, there is support. I can get rehab for those things. It's really important for people to be able to take some control back and empower them to go and get the support they need, rather than being reliant on their medical team. Because you assume your medical team is going to refer you to all of these people. They don't necessarily.

Unknown: 29:06

Yeah, the only thing I would add to that is is I saw a really good example, because it's exactly that I had to go into my GP to request a referral into a specialist which was around balance. So my rehabilitation involved all of the specialists that Kaz had spoke about. But I also because my tumour was on my balance nerve, and I effectively lost one side of my kind of balance function. I went and saw a specialist balanced physiotherapist that worked on the vestibular rehabilitation, which is, which is less about the actual physical movement, and all about reprogramming the brain through the eyes and the vision so that there can be other other specialists. And you do sometimes have to advocate for yourself to get the referrals. So I think it's an important point you're making. There will be, I think there are also, for example, I know there are specialists around upper limbs, where people have sort of hand and arm challenges that you know that there can be. There is a specialist unit in Queens square, for example, and this isn't an exhaustive list. I went. Also went to an ophthalmologist, and I had problems with my vision and the muscles in my eyes, again, that was another specialist. So I do think what we're trying to do with the with the content on the website, is just help people to understand all the different relationships. You know, it's how. Putting in the brain and where the areas of support they might be able to access, so that they can go into those conversations a little bit more informed, and can kind of find out who the right specialists would be for them.

Sarah: 30:40

You've mentioned the website, and we're going to signpost to that. But if somebody's listening to this and they're thinking at home, now, what could I do to help myself?

Unknown: 30:48

I think one of the big ones is sleep, which sounds a bit crazy, but your when your brain is recovering depends where you are, obviously in your journey. But one of the big things I found with rehabilitation is how much time your brain needs to recover, and as you're going through rehabilitation, just just to process what you're learning. So that's a really big one. And as Kaz has already said, kind of build these new pathways incorporating into day to day activities. So I think the first step is probably understanding what it is you need to do. So it's hard to do anything completely from scratch. There are some resources out there on other sites, like the sort of stroke survivors have a lot more resources than we do, for example. So what we wouldn't encourage is people just just starting rehab without some professional guidance. But you can, I think one of the really big things is incorporating into day to day activities. So for example, for me, I needed to try and move in a straight line. I had things like ataxia, which meant I had really poor coordination. So those parts of my brain have been affected. So every functional activity I was doing, picking up my daughter's toys, or making a cup of tea, I would do everything in a way that was trying to move in a straight line, for example, because my brain could no longer do that. So I think it's very hard to say what people can do without. You know, it's very all very individual, but I would say just doing things day to day outside of rehabilitation sessions to support that is probably a really big one.

Sarah: 32:20

That's something that I hear quite a lot, that people go to rehab, and they go, like, to their one appointment, they might be every two weeks, or whatever, that there's like, it doesn't work. It's not working. It's a waste of time. And then you say, if they've given you exercises to do, and they're like, Yeah, are you doing them? No. And I think that's a really important point that you just made by doing little things daily. It is, yeah, it is those accumulation of things, of that repetition, of making sure you are doing those things. Yeah,

Unknown: 32:48

okay. And it's probably my biggest learning in this journey has been to believe in the incrementality, because I was always I was always a person for big gestures, big decisions, big action. And what rehabilitation, neuro rehabilitation, has taught me that you can't see what's happening. The best way to describe it is you never get those speeded up films of a flower opening. It's it is very much like that you are. You're making the smallest, incremental changes, and it takes a long time to see it, but just repetition and keeping doing it, and few months on that, the change will become noticeable, but it's really hard to stay motivated. So it is that finding what however you can to believe that, and you won't believe that every day, but having that hope and that faith in in rehabilitation and just keep doing it day after day, the other thing I found helped was getting people involved. So my family, I talked about my daughter being young, so that when I got a lot better again, coordination and I couldn't grasp things when I first came out of surgery, so I did a lot of work on my coordination and sort of hands, so throwing and catching a ball and things like that. I did with my daughter, I would say, you know, getting other people involved, if it's appropriate and you can, can really help for the days that you just don't want to do it. You know, we're all human. We have days when it's hard and we're more we're less motivated than others. So I think having other people involved with you can really help keep you going.

Andy: 34:19

I'll just say on that one as well, what would be really good to go through the whole process if you have a partner as well? Because I've got a very understanding wife who's kind of learning, but she's learning second hand from me, if we'd have gone or we could still tour guests go to rehab, and say, right, this is the areas of deficit you have. This is how you can maximize what what you you've got left if your partner is also with you at that time, understanding that a they can understand the challenges you've got which aren't always visible, because it, it doesn't manifest itself physically, but also they can then, like you say, give you that encouragement and just say, No, I've I can notice a difference in you. You might not be able to see it yourself. I can see a difference. And that having someone through that journey with you as well might be, might be quite crucial. I

Unknown: 35:06

think that's a really important point. Andy, I think, I think that's absolutely right, because it doesn't. It also doesn't just affect the brain tumor patient. It affects the family the day to day, impact so them understanding is a big part of the battle. As you say, it's that it's often talked about the invisible illness, and people can't really see what's changed. So I think then. Being involved in rehabilitation sessions and having that kind of awareness is really important. Yeah, I agree with everything, everything you guys are saying 100% and I see this every day in the clinical practice. And I think going back to the point about incorporating into daily activities is really key there. Because from what I see, if people are just given a sheet of exercises to do, they are important exercises. They need to be done, but it's really difficult to motivate yourself to do those and add them into your already probably busy life and daily schedule with adding in fatigue and, you know, processing what's happening and maybe treatment that you're having. So I've found definitely that more effective route is to incorporate within things you're already doing to make it more of a habit. So examples that I sometimes say, if I've given a patient, maybe some squats to do to increase their lower leg strength, really, you know you want to be brushing your teeth, and just every time you brush your teeth, you're doing 10 squats, because you're already doing that activity anyway. So you're almost you're not taking any more time out of your day to do that. And kettle boiling is always a good one. So you've got two or three minutes there. Could you do one of your exercises while your kettle boiling? Have you got some memory exercises that you can keep beside the kettle that you do for two or three minutes, and

Sarah: 36:52

this is good life advice full stop Kaz

Unknown: 36:56

of build into how people build build habits. That is habit stacking, that is, you know, proven to be a good way to build habits and and this kind of rehabilitation needs to become a habit and almost woven into, woven into your life, rather than being treated as a separate entity to your life. It is within your life, you know, and it's, it's just thinking about your day. Where do I have a little bit of time? You know, when the adverts come on the telly, you know, can I be doing something to standing? Can I be doing whatever exercise is appropriate to you? And I think that's a really good way to look at it, not just, oh, this thing I have to do, because that's really difficult to motivate yourself to do, and it's bit of a thankless task. But yeah, incorporating to daily activities, I think that is a key point to take away from today. But I think also what Anya said about about sleep and rest in general, it doesn't have to be sleep, but there's a lot of evidence to do with recovery and growth and learning within the brain, and the main part of when the brain is actually recovering is when you're resting. So when you're doing a rehabilitation, you're challenging the brain, and you're kind of firing up the nerves and those connections. But the actual change occurs when the brain is at rest, when it's recovering, and that's the way that learning is embedded into the brain, and when that changing and rewiring happens. So that should almost be as much a priority as rehab. That's not to say that everyone just has an excuse to be sleeping all the time, but it should have an equal priority, and that's why timetables are so important in terms of kind of pacing out your week and looking at what you have, especially if you suffer from fatigue. But I think when you take those steps, you might find that you're almost naturally more motivated and more proactive. And if you're more proactive, you're more likely to relearn, more like likely for your your brain to change. And also, just another thing on that is that it's been proven in research, lots of evidence, evidence to say that if there's a task that your brain is more interested in, then it's more likely to learn. So Is there things that you can find or even rediscover from your previous self an activity you enjoy, and you make that rehab in some way, because that's been proven to be much more effective if your brain is more engaged on the task, rather than just doing exercise absent mindedly. That's not really going to create the connection between the brain and that part of your body, or, you know, that function, so that that's be a really good thing to have a think about. And lastly, just as the other two are saying, really, I think that is really important incorporating your your loved ones into this, this journey, because the more they are educated and empowered with, you know, knowledge about your condition, they can help support you, and that is going to be make the rehab definitely much more effective. But I guess it people, some people might not have that. So I think that's a really good opportunity to, you know, access the brain tumour community. And that's what The Brain Tumour Charity do very well, is connecting different people in in the brain tumor community. Can you connect to someone with a with a brain tumor diagnosis that might be similar to yourself and maybe going undergoing a similar rehab journey, and that might be really useful in trying to motivate each other and keep each other accountable. So if you don't have that care and loved one support around you, is there a way that you can connect to people, that you can relate to, and you can access that through the. The Facebook groups and The Brain Tumour Charity through the website. So I think that's a really good, really good resource for people to look at.

Sarah: 40:34

You've really covered so much stuff, and I think it's been really, really informative having that conversation. I've definitely learned quite a bit just talking to you. And the web page is up already. It's under

Unknown: 40:45

rehabilitation, and you can access it through living with a brain tumor, or if you just type in rehabilitation Brain Tumour Charity into search engine, and that will come up with with the webpage there, and there'll be lots more information things that you haven't covered today. And I think just the main thing is to have a read through that and and just have a think about and just evaluate what's going on with yourself at the moment. Do you think you would benefit from some rehab and actually just taking the first steps in that journey, and obviously that would be going to your medical professional that you have most contact with, whether that be your consultant, your CNS or GP, and seeing if those referrals can be made. Unfortunately, as we mentioned earlier, the NHS services are really not out there at the moment, and can be very kind of geographically varied in terms of the access and the actual services available. So obviously that needs to change, and that's obviously something we're going to be be hoping to work towards. But for now, we've given you know. You have some tips to get on with yourself, and that there are options to go, to go privately for these services. And I know Anya did access some, some private therapy. And obviously not everyone can do that, but that is something that occurs because of this lack of infrastructure that's available for for these, these therapies. Just to build on that, the one other thing to mention I did have, I had a mixture of NHS and private medical insurance therapy. But the other areas of access that is often overlooked is charities. So there are some great charities, like headway, who that they work across all spectrums of brain injury, so whether it be traumatic brain injury or stroke survivor or brain tumor survivor, but they offer some great rehabilitation services. So if you are in a situation where there's a wait for NHS services, or there can be just a restriction on the amount of rehabilitation you can access, it is really worth looking at other other areas, like charities in your area, to see what you could access through some great organizations, yeah. And adding to that as well, Anya that very overlooked as well, is is the role of rehabilitation in people with a palliative diagnosis. And I think there's lots of hospices out there that do offer rehabilitation with all the specialities that we discussed earlier, that can be on an outpatient settings are going into the hospice, or it can be in the home as well, and that might not be accessible to you, but there's definitely something worth looking into, because there are some great hospices with a really amazing rehabilitation support system in place there, and that's often not considered. It's often considered that hospices are somewhere that you go towards the end of your life. But actually it isn't, it's it's actually about improving the quality of your life now. And yeah, that's something that often gets overlooked. So it could be worth, worth considering as well.

Sarah: 43:41

Thanks, guys. It's been really, really amazing having this conversation really good. Done an amazing job of conveying a really difficult and complex subject. So thank you both for coming today. Thank

Unknown: 43:53

you for having us. Been lovely to chat to you this morning. If anyone is interested in this or has maybe a story about their rehabilitation journey, we're really interested in hearing from people and adding to our resources online. And if there's anything that you feel like you can help with on this project, then that would, you know, anyone out there would really love for you to get in contact. And so get in contact with the charity, and they can get you in touch with us if you want to be more involved, or give us some more information, or, yeah, anything we've you think we've missed, especially as well, that's

Sarah: 44:25

perfect. And what I'll do is I'll put the involvement team's email address so people can get in touch with them. Perfect. Well, thank you both very much. Lovely talk. Thank

Unknown: 44:35

you so much.

Sarah: 44:39

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