Episode 41 - PCV Chemotherapy

In this episode, we talk to Sarah and Patrick about their experience taking the chemotherapy drug PCV.  They explain what taking this chemotherapy regime is like, what side effects they experienced, dietary restrictions, hair loss, and more.

You can find out more about chemotherapy here and if you would like to speak to our support team you can email the team at support@thebraintumourcharity.org or call 0808 800 0004

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to have the harm and double survival. Welcome to the podcast today, myself and Andy are going to be talking to Sarah and Patrick about their experiences of chemotherapy type PCV. So, welcome to the podcast.

Sarah B: 1:05

Hi. Yes. So I'm Sarah. I'm 42 years old. I've always been

Patrick: 1:06

Hello

Sarah: 1:07

Sarah do you want to tell us a little bit about yourself quite healthy all my life untill a couple years ago, I started having dizzy spells. As you do you go to the doctors to try and find out what's wrong. Few more doctor's visits a scan and I was Do they know how long , they think you've had it for told I had a primary glioma, which I didn't have a clue what was in the medical terms, but then they said it was a tumour of my insular region of my right side, and sort of from there as a bit of a blur. So I went straight to surgery from that on to radiotherapy and due to the type of tumour that I have, it's cancerous, I'm actually doing some chemotherapy now, I'm going through my chemotherapy at the moment, which is PCV chemotherapy, which you mentioned at the beginning. So that's, in a nutshell how I'm here. No signs or symptoms for years, just the tumour had grown that big that it started pressing on places that made me start having the dizzy spells.

Unknown: 2:20

Yeah, they said, potentially, it could have been in there for growing for 10/15 years very slowly. No signs, symptoms, no headaches, nothing just till these dizzy spells started. Because of the size of it, they, because sometimes they do a biopsy first before surgery, but because of the size of mine, they said, we'll just do surgery and they'll take a bit to find out what it is so through the surgery, and that's when they came back to me and said that the majority of the tumour they removed was grade two, which is classed as non cancerous. But there was the bits that are left and that potentially could grow about more aggressive so that's why I had the radiotherapy and I'm now going through the chemo to get rid of them little bits that are left and to hopefully prevent it coming back in the future or coming back as quick in the future.

Andy: 3:15

Could you just maybe explain what chemotherapy is for people who are who are listening in who don't actually know what

Unknown: 3:20

Yeah, of course. So there's lots of different types it is? of chemotherapy. Mine is called PCV and it's a very, I was quite shocked when I first got told about this chemotherapy because most of it's at home in which you don't expect. So for my therapy, I go one day in the hospital, I have to have blood tests first, to check that my blood levels are okay because chemotherapy is quite harsh on the body. So they like to check everything first you lever everything to make sure you're strong enough to really go through the chemo. So then you have an intravenous injection for about 1015 minutes, I have an injection and then I take five tablets at the hospital have to sit there for a little while while they just check. I'm okay and then I go home for 10 days taking four tablets a day. So a lot of people are quite, you know, they sort of think that's a very strange chemotherapy because they've never heard of people having it at home. A lot of the time it's in the hospital, but and then after the 10 days, I start by having a break for six weeks, and then I do what's called a cycle another cycle and with PCV there's a lot of food restrictions as well there's a lot of food that you can't eat. So yes, it's quite a mixture of things on that one.

Andy: 4:40

My understanding, correct me if I'm wrong is that the actual the chemotherapy attacks the the cancerous cells stops from dividing and repairing themselves is that right?

Sarah B: 4:51

Yeah, that's yeah, that's correct but when we talk about side effects of PCV that's because they attack the cancer cells, which is brilliant, but they can also sometimes attack the good cells, but that's what the side effects are so the nausea, there's other side effects, you know, that that are possible so rashes, sickness, muscle problems, stomach problems, but it's doing good, it's getting rid of the bad cells so some of them good stuff, but the good cells do repair themselves and eventually once the chemo is finished, whereas the bad cells can't, the cancerous cells can't repair themselves.

Andy: 5:27

It's really tough during the actual phases of chemo, and is that why you have several cycles of chemo because it takes a while to attack the cancerous cells?

Sarah B: 5:36

No, it's so for me, I'm gonna have up to six cycles. I think it depends on each tumour and each person how many cycles you have. But my oncologist who's my doctor at the Cannes hospital says, I'll have up to six. But if my body for example, couldn't cope with five or six of four, sorry, they would say, Okay, we'll try it differently we might knock a few tablets off, or we might change the dose or we might, we might not give you six, because it's not detrimental if I don't have six, it's just that's how many they can give me up to six. I'm going to try and do the six I want to try and do the whole six because it is better to get rid of those those nasty cancer cells in there. But if I can't, you know, I'm not worried, because my doctor said it's only up to six so we just see keep going.

Sarah: 6:31

That's great thank you for sharing that for explaining that so well Sarah, I'm going to move on to Patrick, because you've also had PCV, haven't you? Do you want to tell us a little bit about your experience?

Patrick: 6:44

Yes. So my story is a bit longer than Sarah's so bear with me. So my brain tumour was discovered in 2015 and basically the same as Sarah it could have, it probably was growing for at least 10 years plus, it only came about because it got so big day interfered with the electronic circle around your brain so that caused me to have seizures and so I was diagnosed in August of 2015 through having seizures, and then I had brain surgery December 2015. After the brain surgery, I was fine up until May 2017 when he told me that it was back again. So I had another brain surgery and then I was okay up until May 2018. Where they told me that actually these surgeries aren't working, the tumour starts growing back within three months of the surgery. So what we're going to do now is put you on radiotherapy and chemotherapy. However, I didn't start on PCV. I started on a chemotherapy called bear with me because I've got written down here Tremco Zeno melanin mil million million.

Sarah: 7:55

They make them such simple names, don't they?

Patrick: 7:57

Yeah, exactly. So anyone listening at home, feel free to Google that that was six sessions. However, it did take me a year because it was quite a harsh chemotherapy. So it's only six sessions, but took me from September to August to do six sessions, because my platelets occasionally wouldn't be up to scratch and it was every six weeks, and then it would be a case of your platlets aren't very good, blah, blah, blah. So I get pushback, and then they told me that and I had scans every three months, but then they told me that it hadn't worked and the tumours had grown a bit. So that's when they put me on to PCV because that is a chemotherapy is actually works very well for brain tumours because it's designed to get through the blood brain barrier try and say that five times

Sarah: 8:43

That's quite good to know that they can try different fast. sorts of chemo that just because you've had one that there are different sorts and that if one doesn't work they can try a different sort

Patrick: 8:52

Exactly yeah, so radiotherapy two types of chemo, six sessions of the PCV. However, I only managed four due to the fact that I already had a year of chemo, which was not great. At one point, my liver was failing at one point I was told after the fact like after I finished chemo, by the way, your liver was failing at one point. I was like, great, could have told me at the time and then so this one was only lasted four However, before the end of the fourth one, I did have it reduced to just the first, it was first just the five tablets and the pills, you take it home took away the intravenous and then they took away the tablets you take away at home and only gave me the five big ones because they're the ones actually do the main job I was told. But I did take them at home because that event happened during COVID. So I'd have to go into hospital, grab the pills and run home and take them and be ill for five days. But overall, to be perfectly honest with you when it came to the PCV I actually found it way better than the previous chemo. The previous chemo was literally two weeks of taking one tablet a day and feeling like death the whole time. Whereas the PCV I felt like death for five days and then the rest of time I was actually fine. I'd take my tablet, I didn't take it three times today, I only took it twice a day and I actually went to work because I was working part time at the time so I'd go to work and then come home take my pills and I was like it's fine and thing is I was working as a animal technician on food stock which requires a lot of physical work, the fact that I was able to do that job while on chemotherapy, I think, attests to how well how well it was worked for me, though, but it's not same for everyone. I had a friend who was on PCV and he hated it and he said, I'd much prefer the tremozemoline or whatever it's called, so it all depends.

Andy: 10:53

When you said you, you felt rough for a week, how long did you then feel okay, before the next cycle?

Patrick: 10:59

So I'd feel rough for about five days, and then the rest of the tablets you took at home, I would feel totally fine and then I'd have the six week break. But I will say that the PCV, I only managed four sessions, but that did take me from September till August the following year, because my blood platelets and everything else was not working and the reason why they they stopped it at four was because I had a bone marrow failure. Well, the beginnings of it anyway yeah, it's just a case of kept being pushed back, push back, push back and then yeah, my blood platelet level was about 10 at one point, and the ideal healthy persons was roughly meant to be 19 and above, I think, I may be wrong on that on so feel free to correct me if I'm wrong. Yeah, so that's my long winded explanation.

Andy: 11:50

You were actually able to carry on working because that that might be surprising to people. That's surprising to me as well, because I just assumed when you're on chemo, you kind of, I don't know, not quite bedridden, but you're struggling all the time. But it sounds like you have a rough week or so I know everyone's different. The rough week and then you'll have maybe a month or so where you actually can function. relatively okay.

Patrick: 12:12

Yeah, well, that's it. so previous chemo, I was dead to the world for two weeks, quite literally stinking up the lounge because when you're on chemo, your body is excreting the toxins so you and then on the last chemo, I was told Patrick, you stink and I had to put a blanket on the sofa so that I didn't stink up the sofa yeah, so that's it, like,

Sarah: 12:36

They're the things no one tells you about

Patrick: 12:39

So that's it a PCV yeah so it's a case of for five days I felt rough really, really ill I'd be sick and I was sick multiple times throughout the throughout the those five days and then twice I had to go to a&e because I had chemosepsis.

Sarah: 12:55

What's chemosepsis?

Patrick: 12:56

Essentially, it's your body just literally going, Oh, no, something's happening so it starts attacking itself for all intensive purposes. So you basically wake up feeling like erm vomit you want to vomit, and then it's your body attacking itself so you have to go to a&e straightaway and show them your card and they say, oh you have the card, they send you straight into a bay and then they give you antibiotics

Sarah: 13:21

is that because the chemo the body's trying to attack the chemo?

Patrick: 13:26

Pretty much yeah, the body just goes like it's going, Oh, no, I don't know what to do and like, best way I can, yes, you wake up with temperature. So when you're on chemo, if your temperature is anywhere above 37.5 goes to hospital straightaway, because that means that your body's attacking itself,

Sarah B: 13:44

I can actually jump in a little bit there, Patrick, because that happened to me on my third cycle, which was a couple of weeks ago, and I had a temperature didn't feel very generally well. I went to the Christie and they kept me in for a couple of nights, just to monitor me really check for infection, there was no infection, because that's the concern, it was just that my blood levels were down. So they just monitored me for a couple of days, just to check that everything was okay. But there is a misconception about working and things with chemotherapy because it's not always to do with how well you feel about work and it's to protect you and also to protect others because you're not just protecting yourself from catching COVID, the flu, things like that. You've also got got to protect other people because like chemo tablets, things that can be poisonous to other people, because it is a poison, basically, that you put in into your body. So a lot of people think you can't work but as long as my oncologist said to me if I feel comfortable, and I keep myself safe, and even if I worked from home, and I felt up to it, there was no reason why I couldn't. So

Sarah: 14:49

I think for some people, that's quite important because somebody once said to me, I'm going stir crazy if I'm sitting at home just thinking about this all the time all I'm doing is overthinking whereas work gives me a distraction. So knowing that you can work if you are the sort of person that's going to overthink and do your own head in effectively just sitting on the sofa, because some people might enjoy it, you know, having a bit of time off work, but for some people, that's an opportunity for the mind just to

Sarah B: 15:17

Yeah,

Patrick: 15:18

Definitely yeah

Sarah B: 15:19

It's good at first don't get me wrong. It is nice to watch telly but I'm not currently at work butI'm in talks now with my work about how we're going to do it and, you know, phase returns, things like that. So, and I can't wait. I'm bored to death at home every day and like you say, your mind can play tricks when you sat at home because you start thinking about things that you did, you won't really think about if you work in. So I'm just hoping when I go to the hospital on Wednesday, cos I start my fourth cycle that my doctors says, if you feel well enough, you know, when you feel well enough, do a couple of hours or do 10 hours, you know,

Andy: 15:57

Is there a risk though of catching infections? Do you have to be super careful, because presumably on chemo, if you catch a cold or heaven forbid, COVID it would have would have more more of an effect?

Sarah B: 16:08

Yes so basically, for anyone listening out there, because it has been our very catching things, and being poorly the doctors will always give you worst case symptoms, just in case. So please don't worry, because you will always get the worst case symptoms but they do say that some normal infections that you'd get if you weren't on chemo, can be life threatening if you've got them on chemo. But again, they'll always tell you that because it's worst case scenario. My oncologist said to me, you can go out still, you can still go on the bus, it's a bit like COVID really wear a mask, take you antibac gel with you wash your hands a lot, you know, so it's all the same kind of stuff, don't let anyone in the house who's got a cold, who might be coughing in a lot or having symptoms, you know of things. So it's quite difficult for me because I've got a 10 year old child who goes to school, so

Andy: 16:57

And they do like to share germs don't they?

Sarah B: 16:59

Yes, they do, so I'm always like, how are you feeling this morning? And he's like, I'm okay. I'm like, good but for me, I got quite obsessed with it. At the beginning, I was constantly like washing my hands, my hands were sore from just washing them all the time you know, just worrying about ita nd then my doctor said don't this is just protect yourself when you're out and about go out and enjoy yourself just be careful.

Patrick: 17:22

Yeah that's it yeah, I don't know if it's because I'm a bit younger like when I got diagnosed, I was 23. So when I started chemo, I was 26 I just go sort of like, they say, Oh, be careful don't get cold because it can be life threatening and I did actually get a cold couple times and actually wasn't that wasn't that bad.

Sarah B: 17:41

It's more about preventing the chemo then isn't

Patrick: 17:44

Yeah exactly, yeah exactly, it just meant I it? couldn't have chemo and that the effects the side effects of having a cold were worse than would be for normal person but that's about it really. But yeah, it's just case you're 26 and you're like yeah, I'm gonna go and live my life when I can and then you're on the tube in London and you're like oh I got a cold oh well great

Sarah B: 18:01

It's the worst place lots of people.

Patrick: 18:04

Yeah exactly yeah

Andy: 18:06

Can you still have alcohol on chemo or does it literally take two sips of larger and you get drunk?

Patrick: 18:11

Long story short no, because when I was on my first lot of chemo, I was, I'm not gonna lie, I was really depressed and very upset and all the rest of it, like a normal person would be told that you're on chemotherapy. And my doctor never said don't drink, they said or implied that you shouldn't drink, it's better not to but obviously, I'm in a bad headspace already and then the way I've coped with it is drinking and that was actually one of the things that led to me almost having liver failure is the fact that I was drinking like you should rule of thumb. Do not have any alcohol when you're on chemotherapy, because even when you're on PCV, you can't even have non alcoholic alcohol or beer or whatever because that's that's one of the dietary violations for lack of a better word, but I find it really nice non alcoholic beer though the Brooklyn Lager non alcoholic beer so if you're desperate for that beery, taste, it's always a good shout.

Sarah: 19:05

You mentioned then about the dietary requirements do you want to talk a little bit more about that? Because that sounds like it would have almost as much of an impact as the chemo in some senses.

Patrick: 19:17

Well, I don't know about Sarah, I can't speak for her, obviously. But for me, initially, you're just like, oh my god, what can I eat? What can't I eat? Basically, that you can't have anything aged like cheese, yoghurt, dry aged steak or whatever and initially, I found it quite hard to begin with because you can't put beef stock in your Bolognese or whatever you like doing but after a while to be perfectly honest with you I found it quite easy.

Andy: 19:44

Do they explain why that's the case? I'm just curious.

Patrick: 19:47

Just it just reacts with the PCV that's what I was told.

Sarah B: 19:50

There's an ingredient in the chemo I can't pronounce it, it begins with a T tangine or, something like that.

Patrick: 19:57

Yeah yeah that's it yeah

Sarah B: 19:58

And it's also in certain foods, as well as the chemo so if you have too much of it, it can cause problems. That's why they say don't have it. alcohols a standard with anything but again, my doctor said to me don't drink while you're on the chemo but in the six week break if you fancy a couple glasses of wine or then feel free everything within moderation

Patrick: 20:23

I was told the opposite

Sarah B: 20:24

I was the same I was like, Oh, I'm not gonna be able to eat all my favourite foods but actually and all this and then when I actually thought about it, it was like pickled herring and things like that so I don't like fish anyway. So it's not a massive now and sometimes when you feel a bit sick on the chemo, I tend to just eat toast or something that's just easy and, you know, because you just can't bothered cooking for one meal anyway. So at first, it was like hard work but now I'm sort of getting used to what I can and can't eat and it just becomes sort of natural to you in the end.

Andy: 20:55

Are you told that when you when you start, or do you have to discover that yourself?

Sarah B: 20:59

No, I was given a leaflet with everything on names, what I can and can't eat, what side effects I could expect, you know, what I could get. You're given numbers for anyone that will be at the Christie hospital, that's where I am, you know, you're given a hotline number so you can always ring that for any questions there's always doctors nurses at the end, they'll go answer any questions you have or if there's any problems, they'll tell you to, you know, to go to a&e or come there or so that they do they do inform you very well.

Sarah: 21:31

What happens if say, you went to your friend's house, they cooked a spag bol and had a bit of beef stock in it would

Andy: 21:37

With cheese on top

Sarah: 21:38

Yeah but what would happen?

Sarah B: 21:41

My nurse basically scared me half to death. So when she was talking to me about everything she said, I had this woman once, and she didn't listen to the rules and she was very, very ill with an extremely painful headache, which is not what you want anyway. So that sort of made me think I'm never going to not listen to the rules but because my husband actually asked the nurse the same question, because we we had something in the fridge for that night, chicken and white wine sauce and the and they said, well, what about things that are in alcohol and things that? And she said, again, just try it she said you might be fine with it. If it's a little bit, you might be okay but if you're not, then you know not to eat it next time. So it's because you don't always know what's in food.

Sarah: 22:23

Well, that's it and that's what I was thinking I was thinking that they are going to stop your treatment. Does that mean they can't do the next round of treatment? If you ate something on the naughty list?

Sarah B: 22:31

No, I think it's just more about how it would make you it would make you quite ill. I think

Andy: 22:36

nausea ill or just generally ill?

Sarah B: 22:38

Well, I've not had anything yet that doesn't agree with me so I can't say how it made me feel. But my nurse told me that it was a really bad headache for this, this girl that didn't listen to the rules so I suppose it depends on each person, sort of what side effect they'd get. But yeah, fingers crossed up to now, foods not been an issue as such for me.

Patrick: 23:01

Yeah. Well, in my case, I was silly enough to eat

Sarah: 23:06

There's always gonna be one Patrick things.

Patrick: 23:10

That's the thing like, there are a couple of ones which are accidental, like we bought steak from supermarket and had it but never said on any of the packaging that was dry aged, which is what is one thing is not meant to eat. So I'd eat it go, yum yum yum I love steak but to be honest with you for me it was mainly just like really bad dietary issues. So it wouldn't have diarrhoea or anything but in fact, I would have really welcomed that at that time in my life. It just gets like really bad indigestion, like your stomach just feels really bad or you're just burping a lot. So like I found out with steak, weirdly peanut butter cup, Ben and Jerry's, which wouldn't have thought that it took me a long time to work it out, though, because it's really a case of when you're on chemotherapy, they give you steroids and that gives you the munchies and I really like that flavour of Ben and Jerry's wouldn't have it now I refuse to pay five quid for for a tub. But just a case of yeah, just why why do I feel so Ill afterwards? Like, it finally kicked in about maybe four months later like ah that's probably the reason why

Andy: 24:15

So do you have steroids as a matter of course just talking about that because I know from personal experience of being on steroids it can lead to other issues about you know, not being able to sleep very well and munchies and all those interesting things.

Patrick: 24:27

I think it's different for everyone. But for me, I was taking steroids because I suffered really badly with sickness. Like for me, nothing helped in terms of anti sickness tablets. So I took them in the hope they would work, they didn't work and then I'd be consitpated so it's just a case of like, I just take them in hope but one of them was steroids, which was was one of the more effective ones to help with the situation. So that's reason why I was on steroids but otherwise, I don't think I would have been on steroids but I think if something was to happen, something went wrong, or they would put me on steroids, but I think it's different I think Sarah can explain it better than I can.

Sarah B: 25:06

So for me, I've got a bit of a love hate relationship with steroids. After my operation obviously I came out of hospital and they I was on steroids because it helps steroids basically help with inflammation and obviously there's inflammation on the brain after the ap. So they were brilliant for that yes, you do eat a lot. But you know they helped with that. heads not hurting, and I came off them straight after my operation and I managed to stay off them until a couple of months until I started my radiotherapy. When I started radiotherapy, I started having sleeping issues with my head, so not being able to get comfortable, my head felt a bit strange, and I'd not had that before so that's when they put me back on steroids to help with that so I was on steroids through my radiation, which was six weeks, Monday to Friday and then after that, they decided they wanted to wean me off and because I didn't want to be on steroids forever, because they do have good effects and they do have bad effects as well. So

Patrick: 26:05

Exactly. I wouldn't have been put on steroids if it they weaned me off the steroids and everything was going great. They put them back on them because there's some other problem with my head, my head felt again, bit tender, put me back on again and they kept me on and for my first two rounds of chemo, because they don't like to change anything until you've had your chemo to see how you react and again, I was weaned off the steroids. So that was great but then as soon as I went into hospital for my third cycle, they put me back on steroids. So I think it just depends on each like Patrick said each circumstance I obviously needed them more from my head for whatever reason, but I now weaned off them again and hoping that's it now. till after chemo, but we shall see. But yeah, it is. It's not a it's not like we're going to put you on steroids for chemo. I think it just depends on each sort of into individual how they react to it wherever they need it or wasn't for the anti sick, there wasn't for the sickness. So

Sarah: 27:11

one of the things that I think in terms of doing an episode on chemotherapy is one of the questions that everybody talks about is what happens to your hair.

Patrick: 27:22

That's interesting. So when I went on radiotherapy, I obviously lost the hair where all the lasers was going were going in. But I don't know about Sarah, like Sarah said how she had issues with radiotherapy, I'm not going to lie I sailed through it. The only issue I had was fatigue, that would be the case I'll be sitting there watching TV and then like to stroke my hair and oh, look at the massive clump and place it on the side and then so on so forth. So I went bald or very thin where the lasers came through and it took my hair roughly about six to eight months in those areas to recover. I still currently actually have two bald spots in the back of my head but the chemo my experience the chemo or the PCV and my previous one all they did was just thin out the hair where the radiotherapy damaged it pretty much it for me, but different for everyone. There's a person I know from the hospital, he's had radiotherapy and he's been on chemo and his hair is just hasn't grown back so he shaved it all off.

Sarah: 28:19

People automatically think chemo, you're automatically going to lose your hair.

Patrick: 28:23

Yeah, so I didn't lose my hair like somebody will tell me when I was on chemotherapy, said Patrick, we would know you on treatment. If you didn't tell us

Andy: 28:32

What about the beard if you don't mind me asking because that'd be interesting does that thin out as well?

Patrick: 28:36

No, it's very weird like pre pre my diagnosis I didn't really have much of a beard to be honest with you and then suddenly it just appeared out of nowhere to be honest I was really depressed between the diagnosis and the surgery it just came about because I didn't shave and there's like, I had no lasers go into my jaw so it's fine. So for the men out there, grow a beard now.

Sarah B: 29:00

For me and for I'll do the women's version since you've done the men's Patrick again, hair on my head I lost all mine through radiotherapy it wasn't chemotherapy. But I did prepare myself I was quite patchy still am to a point but it's growing back and I thought after radio I thought, I wish I'd had this podcast and because I just thought I'm gonna lose all my hair when I have chemo so I might as well shave it off. So I did brave the shave and I just shaved it all off, went and got a free voucher from the Christie for wig and just thought if I'm gonna lose my hair, I'm gonna have a wig. But to my surprise, I didn't. I've not really lost any hair through the chemo it's all started to grow back now. But bodily hair is a different matter so when I started chemo, I lost all my eyelashes on my right eye. Just on my right eye, not my left eye starting to go back now. I've noticed I don't have to shave my legs as muchand under my arms as much because

Andy: 30:03

Silver linings

Sarah B: 30:04

yeah, because the growth of the hair is just so slow now but so there is some benefits to having to shave. But yeah, I thought I was gonna lose my hair and it was I was just like, I've got no eyelashes I didn't even notice to be quite honest it's quite funny because I'm just looking in the mirror one day and I was like I've got not eyelashes. They weren't coming out in clumps like Patrick said it was just coming off in bed at night and stuff so It's not something you notice until you look in the mirror.

Patrick: 30:30

That's true.

Sarah B: 30:31

So losing all your hair is a misconception. You don't always lose your hair again I like say mine was radiotherapy that cause mine to come out but bodily hair yeah so you don't have to shave your legs as much ladies, but it's a lot easy, it's easier.

Patrick: 30:47

Or men who like shaving their legs

Sarah: 30:48

Yes.

Sarah B: 30:48

Yes of course men as well

Patrick: 30:50

For me the only issue I'd say, if any man is having a receding hairline, it may possibly make it worse that's what happened with me because part of the lasers going through the front of my head. So it made my receding hairline recede faster and I don't have the confidence to shave all short because because of the two brain surgeries I call it a valley for where the surgery has cut my head so it's just a case of it's very obvious once you get to want to shave your hair off

Andy: 31:18

Can I just ask is there any, what you just said there is interesting, is there anything else you think someone listen to this who maybe hasn't been through chemo? Any trick not tricks it the wrong way anything you think or you wish you'd known when you started or something that's actually surprised you.

Patrick: 31:33

I personally wish that someone told me that you need to get really good strong laxative. That's my personal takeaway because I was on so many anti sickness tablets, that constipation was very strong and I did have to go into hospital so like I feel super sick can you give me a drug to make this better? Because when I went to a&e for my chemosepsis they gave me this wonderful drug called he says while reading it Ondansetron ondansetron which was given to me intravenously, which made us made the sickness go away instantly. I kid you not like I'd go into any with all my blood capillaries in my face burst because of how violent vomiting would be and then I'll have that and then within half an hour, I'd look way better and nurses would come in say wow, you look way better now Patrick, I was like, so how crap did I look before then?

Sarah: 32:31

I have heard about people having severe constipation chemotherapy can do that, I have heard other people really struggle with that.

Patrick: 32:38

Yeah, but thing is every time I went in, I'd have I suppose after having constipation for a year, you doctors tell me Patrick you're feeling sick because you're constipated because they've X rayed and they'd see that my stools were packed to the fafters and I'm just like, I know this but you're you give me something called lacido which is a orange flavoured powder and again, due to the sickness, I've hated the taste. I physically could not drink it or keep it down because I would literally just throw it back up again and it was like a good four I think it's a good like, say five months cos I can't remember what it actually was in to actually it wasn't even to the first chemo PCV chemo so I had a whole year of being constipated and then the PCV eventually my I had a on a junior oncologist tell me actually there's this syrup stuff if you want to get a go and I was like yeah, sure, why not? What have I got to lose and that was great you stick it in a bit of squash done and dusted and, yeah, that was great. Yeah, so I'd have it in the mornings and then I'd go in the evenings and I'm not gonna lie at the beginning, I'd pour way too much in so it was a bit violent. So pre warning it's a case of once it hits, go to toilet there and then run run for it. probably thought it's probably not gonna work. Yeah so that's it people complain to me now and it's Oh, man, I had a curry and I'd went drinking afterwards and now I've been on toilet all day. I'm just like, mate, you're lucky. It's a great feeling what are you talking about.Sarah do you wanna bring the conversation a bit bit up

Sarah B: 34:16

For me, I mean, as you know, the brain tumour charity just have a lovely support group on Facebook, most of your listeners probably are on it. I joined that so I knew a lot already about because people had experienced it just and I hadn't I was the person that didn't really know what and they sort of explained a lot and told me a lot about what to expect so I had a rough idea of what I was expecting. One thing I would have liked to have known because it shocked me more than anything is when you go into a chemo ward is how many people and chairs are just lined up full of people having chemo and I was just a bit shocked, you know, I wasn't expecting that I was expecting a room on my own or, you know, a couple of people on a ward but you can actually go into a room and there could be 60 people just sat in chairs or having chemo and different types of, you know, cancer, so it's not just brain tumours, it was breast cancer. You start getting talking to these people. I was just so shocked. I couldn't believe it. I was like, wow, I wasn't prepared for that you know, I wasn't but like you say I got a lot of advice from people don't google anything because Google doesn't always do justice for things. It's always a negative rather than a positive but I do have to say and I would advise it if there is anyone out there who is new to this journey or get on that support group because I learned a lot from people have been through it before me so and now I'm in this position where I'm giving advice and helping them the new people that are coming on again, so

Sarah: 35:55

yeah cos it's it's own world, isn't it the cancer world and brain tumours, its own world with its own language and its own challenges.

Sarah B: 36:03

And I'm not you know, I'm not disrespecting any cancer but you find when you meet people there, they're all very aware of breast cancer and other cancers but when it comes to brain tumours, they're so interested in your story, because it's a different kind of world if you know what I mean. It's it's very different compared to other cancers and but the this group, you know, is, it's amazing. I learned loads, I was like, you know, if I felt sick one night, because obviously, once you get a brain tumour, you blame everything on the brain, brain tumour, everything gets blamed on that, whether it's that or not. And at the beginning, I was like, I feel like this, does anyone else have this? You know, and people might, yeah, I've had that but check with your medical team, you know, and just generally people that understand so that would be my one bit of advice. Just Just be prepared, prepared for how many people are actually having chemo if you have to go into hospital depends on different hospitals as well, I think but, and use that group if you need to

Patrick: 37:04

Yeah that's it because I, I go to Royal Surrey hospital, because their part, because initially I went to St. George's and they're linked to Royal Surrey so I went there because a lot closer due to the fact that radiotherapy was every day for six weeks, so I went there and they are I was very lucky in the respect of their cancer unit had a has a group called T Y AC young adults with cancer basically and I actually went to their unit for my intravenous treatment because they asked people around they said that young people didn't particullarly like going into that room, the room with all the people because they felt like there was somebody younger than everyone else, like having their own space and this charity is excellent because they provide events for the young people and in their units they have rooms where you can sleep off the chemo, you can watch TV while having your chemo, all that sort of thing. So and obviously, you're all young, so you can all learn off each other and just great like if you're in that if your hospital has that sort of thing it may be worth looking into it because I personally found it of great comfort and help, especially as just a case of you do have your chemo with other other young people.

Andy: 38:20

It's certainly worth asking for that and if you're new to this, then that's that's really good advice from both of you, right, where you can go for support with people that understand what you're going through.

Patrick: 38:30

Exactly, yeah.

Sarah B: 38:31

I'd recommend Maggie centres as well. Maggies centres, our centre there's quite a few across the UK where you can go and get do workshops talk to other people, and obviously Macmillan. They're also the people to speak to, you know, there's lots of I was actually surprised how much help was out you know, because you don't go through it you don't every day you don't and then when I found out I had cancer, it was like, oh, but there's so much out there to support everybody that's got cancer it's, it's overwhelming. really,

Patrick: 39:07

The only downside is that you you have to go out it really is. looking because when I first started my chemotherapy, I had an oncologist who, oh, I don't know how to describe him without saying naughty words. Let's just say moody git let's call him that, he knew nothing, like he said to me, like, oh, Patrick, I don't see why you can't drive, I'm just like, and then I'd tell him that actually, no, I can't drive because of x, y and z but he didn't know that and he did he knew nothing. I had to go and find out all this stuff on my own apart from the person's group, they actually came and found me but that's the thing like I'm very lucky, I have my mum, who's part of every group under the sun, and probably knows more than most oncologists about brain tumours so I was very lucky in that respect, but it can be I think it all depends to be honest with you, if you have a moody old git like my first oncologist, then it's a bit difficult. But I personally will say that maybe talk to the nurses because they seem to know a lot more than the oncologist most of the time anyway.

Sarah: 40:09

Yeah and I think that's such a good point because when you're going through this, you're overwhelmed enough as it is you've just been told you've got a brain tumour, it's important that you are told where to go for help that you shouldn't have to go and dig it out yourself because you're not in the right mindset.

Patrick: 40:25

No you're not no

Sarah B: 40:26

No and for anyone, just starting out, they should give you details for a nurse, your own sort of nurse. I know, when I first was diagnosed, I got about six lots of numbers for nurses I've had I had six Macmillan nurses that I could contact if I needed to and they were there to help and they don't just help with, you know what to expect. They help with finances, they help with everything so you know, it's well worth getting in there and, and speaking to them, getting to know them, because they'll, you know, they will help you help you to get your driving licence, back when you need to things like that. So it's, it's well worth getting the support, even at the time when you don't feel like you want anything but you know, trust me as you go in you, you'll be so grateful of these people.

Patrick: 41:14

Yeah and while I'm at it to add on to your point, Sarah, I've heard a lot of stories at my hospital, they had actual occupational therapy therapists who actually specialised in treatment and people to help them get back to work. That's always something you can look into there's I've heard so many stories, including myself, to be honest with you, where employers are just like, hear, you have cancer or brain tumour or wherever, like, for example, me, I typically don't have cancer, I have a grade two astrocytoma, type point two or something like that, which is just, yeah, it's not cancerous. However, it's obviously still doesn't go well, as soon as the employees hear about that it was like, no, go away I don't want to deal with you. Where's where you have a occupational therapist who actually breaks it down for them? It can be so helpful.

Sarah B: 41:59

Yeah, it's amazing how many how many employers don't support, but I'm very lucky, I've got a very good employer. So again, use them for everything you can use them for everything, they'll help you with anything?

Patrick: 42:12

They will yeah

Sarah B: 42:13

It's horrible when you first found out and it's scary, you know, you don't know what's going to happen and the chemo the radio, if you have that, but you get through it, and you can still enjoy your life. So to anyone that's just starting out, you know, get the help get the support and, and go out there and enjoy yourself. I know it's hard,try not to, let it ruin anything because, you know, it's, you'll get there, like me and me and Patrick, you know, we're getting there. So get out there and carry on, and just do the best you can.

Patrick: 42:48

Yeah, one bit of advice I would have that worked for me personally, exercise is great for your mental health. If you can, if you do feel up to it because I know that pre COVID I've managed to get a membership at my local gym, run by those in partnership with the Council for 20 quid a month so I would just go there two three times a week and just exercise because first things first got me out the house, which is great like, and it just builds a great routine and for me, I find routine is key for making myself feel better and my mental health. But

Sarah: 43:26

Were you able to exercise with because I think again, that's another thing I think

Patrick: 43:30

Thats it I'd say if you can and you feel up to it just depends because like for me, it was a gym, I had my I had my circuit. I was there for an hour. I didn't I didn't stretch my own overstrainuate myself. Yeah, I probably didn't eat Yeah, it's a balancing act between your mental health and enough to sustain doing exercise because I did end up getting down to about 81 kilogrammes, which for my height of being six foot two is not great. But if you can do it, I'd recommend doing it because I personally found it of great help because I physical health because you're right, it can make a big am an active person by nature. I look after animals. I was working my old job I was pushing 20 kilogrammes of poo in a wheelbarrow up a 30 degree hill every day nand now currently work for a dog charity and yeah, that's basically it. If you can difference on your mental health if you're able to do it and it's do it, I'd recommend it and I know it's worked for other people. Exactly

Sarah: 44:20

and knowing that you might not be able to go as hard just about knowing your limits, isn't it as you could pre treatment. You might have to scale it back but accepting that the limitations of that and just doing it safely.

Patrick: 44:41

Yeah, like I do bouldering at the moment that's my main source of exercise and I absolutely love it because it's it's a mental puzzle trying to do it but perfectly honestly, I would not recommend it if you're on chemo cos I come away from it and t's like it's literally like a 30 second boost of energy but I come away from it like lightheaded so don't do that but

Sarah B: 45:03

Well, it doesn't even have to be exercised, like going to the gym or things aren't you know, just cleaning your house or moving around or

Andy: 45:10

Going out for a walk I suppose is really useful as well

Sarah B: 45:13

Going for a walk, I mean to be honest. I never like to exercise before I got the brain tumour never mind during but yeah, just just doing other things like that. But one more piece of advice is always listen to your body that was some somebody gave me that advice listen to your body if it's telling you you're tired, don't worry that you're having six naps a day or, you know, just listen to your body and do what it's telling you because it knows best and if you, you know, some people panic, why am I sleeping so much? Because basically your body's telling you you need to and sleeps the best thing for recovery. So just listen to it and if it's telling you not to do something, don't worry if you can't do something just one step at a time that's the best way.

Patrick: 45:58

Agreed.

Sarah: 45:58

100%

Patrick: 45:59

Good piece of advice there Sarah.

Sarah: 46:02

Perfect. Well, thank you guys very much for coming. It's been amazing.

Sarah B: 46:08

Thank you for inviting us.

Patrick: 46:11

Thanks for inviting us appreciate it.

Sarah: 46:13

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@ thebraintumou charity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness