Let's Talk About Brain Tumours
Join us as we talk to about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 7 - Finding your new 'normal' after a loved ones diagnosis
In this episode, we talk to Diane Thomas about how a loved one's diagnosis changes life for everyone not just the person with the diagnosis and why creating a new 'normal' is so important. Diane talks about problem-solving and finding creative solutions to keep creating a new 'normal' as things changed. Diane also talks about her experiences of having to deal with her husband's personality changes due to the location of his tumour and the importance of not being afraid to ask for help.
Diane also shares suggestions on how friends can help and that these don't have to be big it can be as simple as cooking a bit extra and taking it over to a friend who is knee-deep in caring for someone.
If you would like to speak to someone from our support team you can call 0808 800 0004 or email the team support@thebraintumourcharity.org
You can find out more about personality changes due to a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/personality-changes/
You can join our Carers Facebook Group here https://www.facebook.com/groups/470978559740874
If you would like more information on being a carer you can find information on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/caring-somebody/
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
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 the podcast. I'm joined today by my co host, Sarah Chalice, who you met in a previous episode. And today we've got Diane Thomas with us and she's going to be sharing with us some of her story about her and her husband, Nick, welcome to the podcast.
Sara:Hello,
Diane:hello.
Sarah:Hi, Diane. Do you want to tell us a little bit about your story and how you came to be on the podcast?
Diane:Certainly while I got in touch with the brain tumour charity recently after my husband Nick passed away in September from a brain tumour, and I got chatting with Sara Sara chalice and we decided it'd be good to do a podcast together. My story started way back in January 2012. It was a normal day, a normal Monday, I'd got home from work, and Nick had got home shortly before me. We usually chatted about our day went to get changed from our work clothes. I remember being in the bathroom, and I heard a large loud groaning noise sounds like a wild animal. Basically, it was Nick having a grand mal seizure. I've never seen anyone have a grand mal seizure before. So I really didn't know what was happening. Nick was unconscious, and he fell to the floor. And I propped him up with pillows and dark nein, nein Nein. The paramedics arrived within about 20 minutes. I suppose the seizure lasted about that long, maybe bit less. And then he was taken to Winchester hospital Winchester, a&e, and then you seemed completely fine, because that's the thing when someone has a seizure, there was no after effects or it didn't appear there was only after effects. So we found ourselves at Winchester a&e He stayed overnight. And during the night they did a CT scan. That was the moment when the consultant came to tell us do the curtains around the bed and came to tell us that Nick had a brain tumour. So the seizure was caused by a muscle in the brain. And they could tell by the CT scan, that it was a frontal lobe tumour. They couldn't give us any more details. But we were asked to go home and then we came back into the hospital about 24 hours later. And Nick had an MRI scan.
Sarah:He had any adverse symptoms up until that point I was was it just to see you out the blue and there was nothing else or can you look back and think actually there was a few telltale signs interesting Sarah
Diane:I kind of now because I've had months of reflection think was there any signs, you know, my husband was was young fit? I'd say a fitness fanatic. You know, and he's thought he was invincible. So so he was a cyclist rower runner, and he lived for his sport. So the only thing was the previous November I was at work, he emailed me at work to say he'd had a funny turn. And he said, the laptop was on the floor. And he didn't know how the laptop got to the floor. So it's possibly had a seizure. Up until that point, there was no certainly no symptoms. Although that year in 2011, I've seen Nick started to lose his filter. So he started to be less careful what he said in front of people, he would be more blunt, he would lose some of his empathy. I put it down to stress, he had a job that he didn't enjoy. And I think in life sometimes you put things down to stress, when there's might be some medical symptoms you're missing. Because we all get stressed Life is stressful. I just thought Nick thought that it was just stress and Nick was always quite forthright. So in a way it was just an exaggeration of his normal personality. So a couple of symptoms but nothing alarming. Nothing alarming until the grand mal seizure in the January.
Sarah:And that must have been a huge shock then to suddenly just go from nothing to this whole event happening.
Diane:Yeah, because again, I think with brain tumours I know people said Did he have headaches? Did he feel nauseous was the blurred vision
Sara:Neil was different in comparison. It was I had he had pins and needles down one side and you did have a couple of really nasty headaches but you didn't have seizures so it can really appear in So many ways in very subtly context. So it's interesting that you remember, yes, back you you can post to put two two together and and recognise that. Yeah.
Diane:And now Friend s have said, you know, friends that know, Nick, well say, you know, he'd lost his filter and was so coiled up spring at times, but you get on with life and you don't notice the subtle changes, or at least we didn't notice some changes. So, so that was when Nick was diagnosed yet with the MRI scan, we were told what the tumour type was, or the likely tumour type, but then Nick had to have a biopsy to actually find out the definite what the tumour type was, and the grade from the MRI scan. They could tell us it was inoperable. It was us we found out eventually, from the biopsy, it was an oligo astrocytoma. And it was tendrils as opposed to one solid lump, because that's the only thing about brain tumours that not necessarily solid lumps that you can remove. Yeah, so in next case, it was tendrils and it was wrapped around the frontal lobe of his brain, and the brain surgeon said it would be too dangerous to remove. After the biopsy, we found out it was a low grade grade to Nick was a good candidate for chemotherapy. Nick had chemotherapy later in the summer. Unfortunately, that didn't work. So he had to monocyte Nick had the genetic markers, which indicated he would be a good candidate for this drug, and therefore have a good response. Unfortunately, Nick didn't have a good response and the tumour continued to grow.
Sarah:It's really hard if you were being told he's got all the markers. This should be right. You know, this should be straightforward. This should work.
Diane:Yeah, so that was a big shot. The oncologist said that radiotherapy was next only option. A few months later, Nick had radiotherapy and that was six weeks at Southampton general. He had a mask made covered his face, and he was pinned down to the bed every day for six weeks and listened to kind of radio two I think he said it was like two songs on radio two. Radio two and then it was over. So that's certainly nothing to be scared about. It was it was quick. It was sufficient and the people brilliant at Southampton general. And yeah, just I don't think it was even two songs. That tells you how short the procedure was. He went in everyday for six weeks, I guess. After two or three sessions. He said he felt instantly better, even though he didn't know he had a brain tumour. He said to me, Diane, my head feels lighter, though it was it was immediate and wonderful. He just said I feel so much better you said so even though he didn't know what he'd had. Soon as he'd had two or three sessions. He actually said I feel different. My My head feels less heavy. So he carried on with the six weeks felt absolutely fine. He did have hair loss, but his mother always said he had had a lovely shaped head. You said he's always had a lovely shaped head. So actually Mick with no hair was was okay. And then when he had the next MRI, it was amazing. Yeah, it not only shrunk but doubled the tumour, and it shrunk the tumour by about 60% 60 70% We were so pleased we felt then that we could start getting her life back. Yeah. After the radiotherapy. Then I used to work for cruise line. So after Nick had successful radiotherapy, we booked to go on a cruise to the Norwegian fjords. I've always wanted to see the fields always wanted to see Norway. We booked on a Norwegian fjords cruise with bald head. That was absolutely fine. Do
Sarah:you think at that point, this is it. We were through the worst. We've
Diane:Yes, absolutely. I thought we're through the worst. And I knew that Nick would be monitored. You'd have six months of scans which he which he continued to do have six monthly scans. And the interesting point about radiotherapy is it's strange after you stopped having radiotherapy What I didn't know it continues to work though. The next couple of MRIs the tumours shrunk further, I didn't realise that your body's Incredible, isn't it? And the radiotherapy you have to scan and then for another probably another year it continued to slightly slightly shrink and
Sarah:symptom free at that point was he just like able to get on with life?
Diane:So Nick was never free of seizures aren't they were controllable. And I think if someone has a brain tumour and then a side effect they have epilepsy, which Nick did be patient with the drugs because it takes a while to find either the epileptic drug that's right for you, or the dosage that's right for you. And it's a bit of trial and error. You might never still be seizure free. But you can get to a point where you see issues are manageable. So obviously we didn't, we had the brain surgery, and then we had the oncologist then a neurologist was fantastic. So Nick was put on a drug that he felt fine taking, he didn't have any side effects of the drug, and it largely controlled the seizures. And so what it meant was that he never had a grand mal seizure after January 2012. That year he had to Petey miles where he was almost unconscious until we got the dosage right. So again, my advice would be if you have epilepsy do keep speaking Shawn ecologist and neurologist and see there might be a cocktail of drugs that could work for you. So after we got that, right, Nick would occasionally and we're talking every few months if he was stressed. So again, that's an important thing, if you're having epilepsy, certainly with the brain tumours, keep your stress levels low. Yeah, because if he got onto stress, then he would have a small seizure. So he would have a hand clench or a handshake. So it started off with a left from tool tumour, and it would affect his right side, it's the opposite side. So it have a right hand clench, or his right hand would shake. And occasionally, he would be trying to say something and to lose his ability to speak. But this would last a minute, and that's all he ever had from then on.
Sarah:And I guess once you've experienced a grand mal seizure, that probably seems like nothing.
Diane:Yeah, if you've spent a grand mal seizure, nothing prepares you for that. And so yeah, so any subsequent seizures was certainly far, far less than the grand mal seizure. And as I said, you know, from 2013 onwards, they were very small until we got to 2018. So we just live with it, and Nick could disguise it. So that's the other thing. People in us think that people are looking at you people on, people are too bothered getting on with their own loads. So if Nick had a hand clenched, no notice we knew, but no one really noticed the interesting facts was the Nick was an avid cyclist. When we lived in Richmond, he actually cycled from Richmond to Devon in a day. He was a full on roadie, he was a full on mum or middle aged man in lycra. Mid light, called mammals, so it's m m A m i l. And it stands for middle aged man in lycra mammal as opposed to a mammal. Yeah, see, he had a car there's always the lycra. So you know, like a Tour de France rider. So you had all the lycra and the Clippy shoes went into the bike pedals. And even after his diagnosis, he was still getting his bike. When his lycra
Sara:actually get out, isn't it, get out into the fresh air and just take your self away from all that and be in the moment is such a good thing to get out into nature? And yeah, how about you though, Diane, I, you know, he was doing that that was like a relief for him. You know, at that time, what were you doing to look after yourself was caring for him?
Diane:Probably not enough? In answer to that question. I look back and think I could have done more self care. But you're so in the moment. You're so an eye. The other thing was Nick gave up his job. So I was caring for Nick and doing a big job. So I was doing 12 hour days, I work for cruise line, I was in charge of their overseas agencies. And so I would have to get into work early and stay late just because of time differences around the world. Nick was okay to be on his own. But I didn't feel that I could have a life. I felt as soon as I finished work, I needed to rush home. And I think that's the mistake I made. I needed to still carve out a life for myself. And I did to a certain extent. But now looking back I that was the start of my journey of eventually being a full time carer. If people asked me out for a drink after work, I'd say no, I've got to get home. If there was any kind of parties or anything even with neighbours that did effect Nikki didn't really want to go because he was frightened that being in a busy place with lots of social activity will cause them to have a seizure. So it meant our social life was very truncated. Over the years I became more and more exhausted.
Sarah:Did you feel that you had to get home because you were conscious that he was at home on his own and had been home on his own all day if he wasn't working or was it because you felt that he wouldn't be able to look after himself? At that point, the former
Diane:he was on his own all day and I felt guilty.
Sara:It's exactly how I felt Dianna. I'd be at work all day, and then kind of be rushing home. I felt guilty going out for a drink and enjoyment and you nearly been sat home or gets boring, isn't it?
Diane:Yeah. And I should have and I think for for carers, I think it's carving out your own life and I didn't really. It was snatched moments. I think that's what I would say snatch moments of bits of fun, but even when you're out, the back of your mind is always thinking is Nick, okay? You know, I'll always be texting him. I need to get back. Yeah, he's he's stuck at home all day. And I need to be there for him. But in hindsight, I think I would have been a better care for him had I had my own self care, and I do myself better, I would have been less intolerant. You no less snappy, less tired. You just feel the need to be with that person. And I wished I just taken a deep breath and thought, Diane, you need time for yourself. Yeah,
Sara:but we're not taught that though. Well, we I don't think we're ever so if anybody's listening on this podcast, you know, that caring for a loved one, it's, it's recognising that, you know, this is your time with them, too. So we're actually looking after yourself. You have more to give them because you're in a better state of mind.
Diane:Yeah, exactly. And you know, and then yeah, your best state of mind to care for them. You've got stories to tell them, you can, you know, just things that have happened. And so then it can enrich their lives as a default of that.
Sarah:And how did it affect your relationships? Obviously, it's that's a role change. He's not working now. You're now working full time. Did he become more needy emotionally on you at that point?
Diane:Yes. Very much. So Nick became very needy. And he, he always wanted from the day we met we met to in Journalism and Creative Writing. And he was a deeply affectionate man. And he was one of these men, aside from his sport would want to be with me 24/7. And so you can imagine how that then increased after his diagnosis. So yeah, he became very needy. And, and I responded to it. So he, he just wanted to be with me all the time. And that was quite difficult, because then, as I said, I felt guilty. So I would I would give into it. And you know, so he would text me when you're going to be home, how long you're going to be and it was, yeah, it was, it was quite challenging. And I'm not sure I handled it as well as I could in the respect of I just gave in. And so I think, and I think that's what carriers do you give Him because that seems the it seems the easy option to just given to someone wanting you to be there with them all the time. So he was definitely very needy, not scared, not scared of his brain tumour, not scared of the prognosis, because we never asked what it was. But he just became much more dependent. And I think he also felt guilty because I was earning I was the breadwinner, he thought he wasn't contributing in terms of bringing money in or doing anything that he felt was particularly worthwhile. So then then you could come into conversations about what what you think you can do, because he was still healthy. So just because you have a brain tumour doesn't mean you're not healthy. He was still healthy, he was still fit. It's still
Sara:got life to live as Yeah. You live whatever's going on, you know, make this let's make the most you know,
Diane:and I think that would be an important, or a piece of important advice would be the as I was working, we chatted about Nick, what can you do? He left his job who's a project manager for local counsel, which he hated. Sorry, all those project managers, local counsel. But it was it was a job he hated. So in a way that was good, because he didn't mind leaving that job because he didn't like, but then it was time to think well, what are your passions? Because if Nick was doing something he loved, that could then in turn, take the pressure off me? Yeah. So we we had a lot of chats. And I think it's important to talk about war. Aside from the job you did, what you enjoy doing. So obviously, cycling was number one. Absolutely. Obsessive was was a right word. He was obsessive about cycling. So we've got a local bike hub in Winchester. So cafe and a repair shop. Nick got in touch with the owner, he started to volunteer at the local bike hub. So he was happy as anything being covered in grease. You know, seeing bikes in the back learning a new skill. So that was really good for him so he could tinker on bikes for an hour or two, just drop in there. meet like minded people. So that was a bit of socialisation
Sarah:that make it easier for you. And he Yeah, are you at work? He's at home just waiting for you to walk through the door. Yes,
Diane:exactly. Yeah, you know, and then he had something to tell me. So he could go Oh, my God, you know, this person came in with this that me other or chatted? So then it wasn't one sided. He could, even though he wasn't contributing financially, he was certainly contributing to our discussions like we used to. So yeah, he did that. Obviously. Sarah, he learned graphic design. I know you're a graphic designer. Yeah.
Sara:Neil, learn Egyptology so you just never know where. And you've got suddenly you've got your learning. So Neil always loved Egypt. So he was there every every week on a Wednesday afternoon at Richmond adult college. Enjoying that for seven years of a degree at the end of it. You're
Diane:Fascinating, isn't it? So yes. Whether it's Egyptology whether it's bike maintenance, graphic design, you learn how to build websites, so you had a little bits and pieces of money. So a friend would say, you know, Can you can you do a website, give setting out conservatory, look at the garden, put his favourite music on he was he was happier. So I think that would be a tip is find whatever that new normal ways your life might not be the same. But it doesn't have to be worse. And in some respects, it can be richer, because you find value in things that you might never thought you you could find value in, you could follow your passion, you can really start to enjoy life again.
Sarah:And you think because it sounds like he had a job that he hated to start with. And I noticed in talking to you, Sarah, you gave up your job and you were like, I got to the stage where I didn't enjoy it anyway, something like this can give you that little bit of a kick number
Sara:one for me was I you know, I've been working in a corporate for five years. And although I love graphic design, being creative, and I think it's a great one, anybody out there, you know, what is your you know, it's getting creative, what can you create? Or do that's where we're really great as humans, when you're getting creative, it's more exciting. And then that was it. I did a little book that I was reading, it was kind of just my own life coaching and I realised I had to sack myself. Like myself, because number one I want, I wanted to be there for Neil more and spend more quality time with him, however long he had. But number two, I've had enough of the corporate world and actually I was learning and as you I'm sure you have, Diane, when you start to go through all this actually there's a lot of stuff that really doesn't really matter anymore. You don't sweat the small stuff and indistinct I just don't need to bother with that anymore. You know,
Diane:I've got absolutely so and I think when Nick Chima progressed, we carried on with life, I suppose we had a new normal and stability for about five years. And then in in 2018. We were going to visit my sister in New York, Nick had a fairly big seizure on the train. So you can imagine a packed cross country commuter train and it was a commuter time. Okay. He started vocalising, which is one of the types of seizures that Nick had but vocalising and couldn't stop. And then you have the whole train carriage turning around and staring at you. So I had to try and think it's it's limiting seizures or limiting student seizures or self limiting. And because I knew that I thought at some point, he's gonna stop vocalising. So I found myself telling people on the train, it's fine. It's okay. This will go away as to and then it did. So cynic Yeah, had a fairly big seizure. And stupidly, we carried on all the way five hours to your point. After that, and I'm thinking, why didn't we get off? But now we carried on because you have a different normal you get used to see issues you you just think, Okay, we've dealt with this before. We'll carry on for five hours.
Sara:Sure, they were delighted on the train.
Diane:Exactly. So yeah, so so we carried on all the way from Winchester to New York. I look back now and just think that probably wasn't the wisest decision Diane you've ever made. Eat. But anyway, we made it. That was
Sara:that was your new normal.
Diane:My new normal, which is coping? Yeah. So it's funny what you just cope with, isn't it?
Sara:You get on with living, it's like we're going away and we're looking forward to it and you're like, Well, I promise you're gonna be all you know, everything will be okay after this.
Diane:Yeah. So you think that unfortunately, over the weekend, Nick had more seizures and then totally lost his speech. We ended up at York AMA, Nick had another MRI scan, and they then fed it was tumour progression. This is 2018. Another year went by, where the oncologists weren't sure whether it was progression, or inflammation. So we carried on living our life, not knowing oncologists are brilliant and fantastic. But even with Nick's tumour, they really didn't know quite what was happening. So be careful to Google your prognosis or Google your tumour type, because there's still unknowns with brain tumours, they weren't sure because sometimes inflammation can look like progression on a scan. So this went on for a good year, until the spring of 2019. So almost a year after that seizure on the train to York, then they then determine Yes, it had grown. And Nick was poor, put on more chemotherapy, a different type of drug. I decided at that point, as Sarah had mentioned earlier, corporate life started to lose its shine. I felt I needed to be with Nick to get him through the chemotherapy in the summer of 2019. So I left work, I left my big corporate job, I felt that I just wanted to spend time with Nick. And we had a lovely summer. It was lovely. He was having chemotherapy, but he wasn't sick with it. You don't always have to be worried about chemotherapy. Nick was never sick. He was never sick. You have anti sickness, drugs, you listen to the oncologist. He was never never felt ill he never felt it was any treatment.
Sara:Amazing. I will just add to that Neil at the beginning, was very sick. He our team was dolemite to lots of then his body got used to it. I mean, he had therapy on a five years and he actually just got used it was like green around the gills. But I drive him home and we'll get ready. Maybe go. Yeah, the body is quite innate and getting like resilient.
Diane:Yeah. And I don't know if because Neil and Nick were fit and young. I don't know if that if that helped. I really don't know. But he but it was Yeah, take the anti sickness tablets, eat healthily, you know, eat sensibly. He got through that fine. I left my job in 2019. And Nick started to get symptomatic. In the summer of 2019. He started to get a little bit of incontinence and again thought, is it just cycling or is it something to do with the tumour he carried on with the chemotherapy course he also started bizarrely to have trouble actually getting on the bike. Nick had these racing bikes, you know, a road bikes Tour de France high end bikes with the skinny wheels and his Clippy shoes and his lycra. And they have their saddles super high, but he started off problems actually getting onto the bike. He then had to we had a we had a couple of fogged up bike. So again, it's that determination to carry on with your new normal. So I thought, okay, it's the chemotherapy, so he had his fancy Tour de France lucky lucky bike. And then we had a couple of old formed up bikes, but then low slung, it's all okay, well, you can't get my tall bike. Let's get on the the low bike.
Sarah:Did you find that you naturally had to become a very good problem solver and adapt very quickly to things Oh, as things
Diane:salutely I never thought I was a problem solver. Maybe I am I now look back that Yes. Yeah, absolutely. You find creative ways to solve problems. And whether it's a new medical condition thinking okay, well Nick can't get on a high bike because he can't lift his legs up very high but we've got a low bike so you find ways that you can still carry on and he could still do what he loved which was cycling or be it was this really kind of rusty old folder. But it still meant we could go cycling and we could go for coffees. And actually it wasn't worried about that bike being nicked either because it was so yeah, so you do find creative solutions
Sara:with that dialogue, which is lovely. It's not what you can't do. It's what what can you do and it's so much that you still can do it. You know, we can always look back and go oh, I can't get on that bike. But hey, it's about focusing forward we can we can Turn this around what? Yeah, I was even thinking that you're going to start to talk about tricycle next or whatever you do. Why not? And actually, I'm just gonna say, Nick It's just come to my head I Neil and I, we took him on cycling companion down at Bushy Park and they have this so they get these tricycles or your to your a big tricycle when he unfortunately I was doing all the pedalling from the look of it. But if we were out in the fresh air and it was beautiful, you know, speak tricycle with a two seater, and off we'd go, it was rather wonderful. So
Sarah:you both feel the pressure there being the well, one, you had to be the one to find the solutions. You had to be the one to come up with the answer that both Nealon net left it to you to find those solutions, or was that part of your role? Almost you know
Sara:what you go into that role? Don't you die? And I think yeah, step into it, because it's like you want to keep them going and want to make the most it's the you know, what can we do? What not you know what enjoyment yeah, sometimes Neal will shake his head if I was taking him up to the rugby because he wasn't able to speak anymore, but Well, I kind of want to go and I'm the carrier so I go free or whatever it is and and I always say to me I look I don't want you stuck in these four walls all day. I said that is not an option. I said even if it's just out for like half an hour or a couple of hours. It's so incredibly important because you're well Boeing closed and it's very much you can't almost threatened to pull the plug of the TV in early years because he's well became so much smaller. And with that, he was just watching news on a on a loop. And it was the recession. So he was getting into this really like, Oh my I stopped watching that. And I get over to Seinfeld. And you know, getting watching the comedy, but you know, there were times I'd have to kind of G him up we would be the GIA uppers. Wouldn't we die on kitten Now come on, you know, let's when you get back, you'll be pleased to get home and relax again, you know,
Sarah:that must be quite emotionally draining to have to constantly be the one to try and lift it up all the time and find their solutions.
Sara:You know what you don't even think about that. You just it's just what you naturally want you step into it and you get on with it. And even though it is exhausting. You get on with it. Don't you die on?
Diane:Yeah, I think you do. And yeah, Nick watched kind of news on an endless loop as well. Yeah, and I think it's yeah, you step into this role and it's almost you don't realise you, you just do it naturally. And you just want to do the best for the person you love. You want to do the best and you want them to have lived their best life and whatever shape or form that best life is that you can live their best life with them. You Yeah, it just it came natural actually. And so So yeah, the time to find solutions was just a natural development of our new life. You we had a lovely summer. We had a lovely summer in 2019 back of my mind, I suppose I knew that Nick was getting more symptomatic and I thought the the leg problems and the bit of incontinence, I thought I think the tumour might be growing. So in October 2019 Nick had the results of his latest MRI scan. The next tumour then was a grade four and terminal which was obviously quite devastating the the tumour it spread it was now left and right hemisphere and it was all over his brain they asked you want the prognosis even then we said no we're going to carry on live our life
Sara:Good For You are so good and courageous and you know very brave to go. That's it. Let's get on with this. Let's make the most whatever happens.
Diane:Exactly. There wasn't any you know, hadn't changed that day just walking into the oncologist. So we walked out of there determined to carry on we just carried on in the January of last year, they decided to do another form of chemotherapy, intravenous chemotherapy in January in February, but that actually unfortunately didn't work in March of last year, just as locked down was happening in a pandemic started to unfold, Nick Gore suddenly went downhill. I found myself on my own with Nick who was obviously now terminally ill and very symptomatic. So that so we fast forwarded a bit to March of last year
Sarah:and that was just when Coronavirus we went into lockdown. Yeah,
Diane:I was saying to say I had the perfect storm. It was almost you know that Nick started to get bad in March and as Coronavirus started to hit that meant that every single health service professional was stretch to whether that was the GP, the hospice, any kind of care help or I was initially totally on my own. And that was quite scary actually, that was quite scary but you find again and an inner resilience to cope it was finding friends that work errors or still work, you know, so it's finding those people that can give you advice because there's people out there you're not alone even then I went, it was kind of thinking, right? Okay, before lockdown happens in in the February, I met with two friends that I've only known for a couple of years and they've become really close to me and they were carers. And it's interesting in life, your friends ebb and flow. I don't know Sarah, you found this friends thing you thought would be there maybe one in the same way you thought they might be. But new people come into life. So I had these friends and they wrote me to do lists in what I needed to do. So reach out this pete this support out there reach out even in the pandemic there was, you know, so they wrote me to do lists, what agencies to contact what I need to do, how I got hospital equipment, you know, a holistic view of everything I needed to do to support Nick because the as I said, the health services was so stretched last year and obviously continued to be stretched, but I think at the beginning of the pandemic, it was such an unknown wasn't it? And ever It was chaotic. And I had my not my list it was right I need to do this I need to do that. And so so that was the march
Sara:like I was gonna say that summit Yeah, putting the feelers out you know with you're the one who like knows that you know, you're you're not on your own it you feel like you are especially with Coronavirus, and it's such a, you couldn't get friends and family as much as like around there, which is desperately needed at that time. Even with particular charities with their doors closed. They're still doing great work. Others don't really understand what you're going through. In this. You've been through it yourself caring for a loved one.
Diane:No, this is it. And I think it was kind of when Nick in the April last year got unfortunate got psychotic had psychotic episodes, because it's affecting his brain. I remember phoning my friend in the middle of the night and my friend just saying phone 999. And don't be afraid to do that. Because that expedited care it was like, you know, this person this woman is in need. I remember phoning 999, that expedited a care package.
Sarah:Did you feel hesitant to do it? You know, I hear people say no, but he's not like, this is a team that I can't do this to he's not that person.
Diane:Yeah, I felt awful. I felt awful. I thought this isn't my lovely, caring, sensitive husband. But it isn't. It's the disease. And it's the disease that's doing this to your lovely, caring, sensitive husband. He's still there. It's the disease. It's starting to take hold. And you can't put yourself at risk your husband at risk, you know your partner at risk. So don't be afraid to do that. Yes, absolutely. I felt I was portraying him. But in hindsight, now, it was the best thing because it expedited care, because it's recorded, it's recorded. And then it was kind of this person, this woman is how she needs care. So that that was needed. So that was the April everyday was a challenge. After that Nick developed a deep vein thrombosis, he's got shingles, he got a chest infection, but because he was so young and fit, he got through all of that. So he got through all of the blessing, he kept on going. But again, even through all of that you find a new normal again, you know, so as the months progressed, he started to lose ability to move his arms, legs, speech, swallow, but there's still ways you can live your life. So I think it was just you know, I talked there about having coloured lights in the lounge, because I just thought, you can get these really fancy Philips Hue bulbs where you control it by your app, your phone, so I could think right, it's going to be sunny yellow during the day, and it's going to be lovely and blue and calming in the evening. So Nick knew, you know the difference between day and night. And so we had different colours we had at that point, you know, I would have the TV on and he loves space. So I'd find Discovery Channel. So if I wanted to pop out to get a prescription and I had Kerrison at this point, he could watch NASA he could watch space missions, I'd put subtitles on the TV, you know so he could watch what was happening on the on the TV and there was without necessarily any sound on Sophie, if he woke in his hospital bed in the in our lounge, he there was always some kind of activity in some kind of stimulation. So there's even as a disease progresses, I don't know if you find it. So there's always you make adaptations to kind of
Sara:Absolutely there's lots of lovely things. I mean, we're so lucky. We're lucky in the fact that you know you've got or we've got all these lightweight parts and stuff like that you can You know, I have a playlist for Neil or I get a new book on Audible for him to listen to sometimes you just keep you know him there's, there's lots you can do and I think that coloured lights thing which changes the mood in the, in the living room I think that's rather wonderful and because Neil was in a hospital bed for four years, you know, so there's a long old time but yeah to have that you know, light show and I think it's an it's just so caring and loving Diane are
Sarah:important to you as well, your well being because now you're at home, you're caring for your husband, he's in a hospital bed in your lounge or your home had been turned into a hospital effectively
Diane:was under hospice. Yeah. And you know, when you could still take tablets, and sometimes I would crush the tablet down into shotglass you know, so it was fun. He sometimes didn't want to take his meds or was difficult to swallow. So you find you find inventive ways around things to so it was kind of, you know, a shot glass for this medicine or it was we'd have you know, kind of a lounge disco with the coloured lights. I would be the one dancing around the bed. Funny. I still do that. Now I have a kitchen disco. So I'm just dancing around my kitchen. Right? And so it was Yeah. And it was just things that, you know, you could do to help and I gave me an eye mask when I wasn't there, and he could still use his hands. I said to him, put your eye mask on if you don't want the carers to bother you. So he would just put that down over his eyes. It's almost like a Do Not Disturb sign. Yeah, I was trying to think what what you know, as Nick started to lose communication and couldn't vocalise what he wanted, it was it was kind of what can I do? So the carers will know. And just about self care. I started quite soon in the in the spring, I would have between five o'clock and six o'clock or so right? I'm going to make some phone calls. And sometimes between five and six o'clock I did. But sometimes what my neighbour did, I couldn't see her because of Coronavirus. She put tape and chairs down the bottom of her garden, on sit in the bottom for garden with. And I had a bottle of wine in my rucksack and a glass and ice cubes in the palm of my garden with my music on and just breathe, pause. So the carriers knew at five, between five and six every day, Diane was doing something I didn't tell them what I was doing. And I said I'm just going out. But I'm only I'm really close. I was I was literally next door one. And and I had my own little table and chairs, I could let myself in my neighbor's back gate. And she said just be there as long as you want. But I knew if anything happened, I could run back in five minutes. So it's again finding inventive ways for you. So it was Yeah, so I had my you know, had my kind of whether it was face or whether it was white wine, glass. Nice.
Sarah:That's a really good piece of advice, isn't it because I you know, I think if somebody's listening to this, who has got a friend who's a carer, often who people think I don't know what to do to help, I don't feel I can do anything. But even just having that neighbour that put that table and cheer you at the bottom of the garden gave you permission almost to say here's the space use it. It's something that's more that can make a big difference.
Diane:It can be it can be the tiniest things that make a massive difference. Don't think you can't do anything because all it was was space at the bottom of her garden. But it was huge to me, you know that I could go in that safe place. Carers didn't know where I was, but I could breathe and recharge my batteries. And again, it could be the if you're caring for someone, it might be built into your own routine. So Nick knew and even as he got sicker and sicker and sicker he knew that it's five o'clock die and goes out at five o'clock. He never actually questioned I just did I'm making calls and when he could talk to you and oh, right, okay, because you've got lots of calls to make. And then as it progressed and you couldn't speak, I'd still say to him, I'm just going out for my five o'clock calls. And then it recharged me for whatever I needed. And I sometimes did make calls other times I would just sit there and have a glass of wine and sometimes I call it It took the edge
Sara:of the world just type time for you just to sit down and and getting away from from in that house as well. That energy of all that's going on because it'd be like a bus station sometimes with carriers coming in. Getting away from that just having time out from that is really important. It can make or break somebody it's really powerful. Getting into the outside space, as I always say helps you deal with the inside space you can just get away from MIT in the EU and it's just about you not having to be there for anybody else. But in that moment, really Yeah,
Diane:exactly. Or I've got, you know, I've got a local park, I've got favourite bench and a favourite view. So find your bench, find your view, you know. And so there was a bench I used to go to as well, and it was an odd sit on my bench. And I'd just and I would have my air pods and I would listen to music or I'd have an I would have a talking book or anything and it is find your space, whatever space that is, I wish in the caring journey, I'd found my space sooner. So find your space find it sooner, it will help you through I found it, but only when Nick was terminal in the last few months. And I wish I'd had more self care earlier in our journey because that would have helped
Sara:because I would say that's for anybody out there where you maybe don't even feel okay, I'm okay and carers often say oh don't worry about me I'm okay. I've said that before. But actually you may feel like sometimes we really do suppress our emotions quite a lot. You've got no idea actually how you're feeling so it's checking in and when you do go to sit down that button the grantor goes with that bottle of wine you know it's checking in with yourself because actually when you sit down and get away from it you you can see the wood for the trees How am I feeling because you don't you don't switch off otherwise
Diane:you don't you don't say that five o'clock bottom of the garden and then ask Coronavirus ease to be my friend would join me at the bottom of the garden. My neighbour says sometimes you know she she was there. Sometimes she wasn't but she'd always find me. It's a bit like finding like a leprechaun at the bottom of the garden was a 25 foot one. So me and my little toadstool with a with a glossy Pinnacle show. But yeah, it was the safe space and then and then she had to shed to even if it was raining, doesn't matter. It doesn't matter where doesn't, doesn't have to be anything super glamorous.
Sarah:What's important to remember isn't is that if you have a friend, if you're listening to this, and it's your friends, that's doing the caring, or if you're if you're listening and it's your dad or mum, it's got a brain tumour when your mum does main responsibility, the caring and use of everything I want to help, I don't know how to help my mum or I don't know how to help my dad, it's some of these little things. It doesn't have to be huge.
Diane:It's the small things, it's, it's someone picking flowers from their garden, put it in a jam jar and leave it on my doorstep. It's someone cooking a bit more for their evening meal. And making some for me, it's about someone just giving you some nice hand cream or body lotion or boss or so. So you feel better. There's so many things that you can do for a carer that it's not massive, but you feel that there's a world out there and you feel that you feel cared for. And I used to just find little packages on my doorstep, you know, from people and it just Yeah, but in the world, you know, and then text me because you've got you think these days, you've got so many kind of forms of communication. So I'll just text someone or some say Diane, there's we called it my neighbours. We called it the yellow sticker fairy ySF. So Marks and Spencers so I'm right in the city. So Marks and Spencers are great for yellow stickers bargain posh food. So my my friends would go on the hunt for markdown yellow stickers. And they used to say Diane the ySF fairies been been on your doorstep. So it's a yellow sticker fairy, they would get stuff for me. And they would just say yeah, why is there fairies been have looked on your doorstep? So you could do something like that is silly. Yeah. But it was funny. And it was kind of you know, what can they get for Diane you know, and so they would go kind of late in the day, you know, whether it was I don't know, steak or something really lovely really treaty. So it's all these imaginative ways you can kind of do things which doesn't really cost much, especially if it's reduced mops and Spencers goodies. Yeah. So that was good.
Sarah:And there any last thoughts that either of you would like to they were really really amazing talking to you both and so many good things even just just that like you said, like, comparing things like that just absolutely amazing.
Sara:I was gonna say it's been wonderful listening to your story, Diane, wonderful. And I know with one of your things it was grabbed life with both hands. Do you want to say a bit more about that?
Diane:Yeah, I think it's Yeah, grab life with both hands create your new normal life is for living. Don't let your brain tumour diagnosis do Fine you, you're still you. You're still you're still alive. You still got so much life to live. Don't be frightened by it is frightening initially, but move forward, find your passion, find your space and create you new dreams, whatever they are and live your life because every day we're here is is a blessing. So every day if the sun is shining or not just go out and live your life because yes, we've only got one life. It might be shorter the new arm, but you really don't know. So just go for it, go for it and create that normal new normal, healthy, amazing
Sara:advice right wise words. Diane beautiful. beautifully put. Thank you.
Sarah:Thank you very much. Thank you.
Sara:Thank you.
Sarah:We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes or wherever you get your podcasts so we can reach more people and raise more awareness