Latest / Rad Chat / E211: Holly Stubbs and Lee Wilkinson - Cancer and Pregnancy and Navigating Cancer Treatment
Transcript
- Jo McNamara Rad Chat Host (00:00) Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara. Naman Julka-Anderson (00:04) And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives. Jo McNamara Rad Chat Host (00:21) We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or your personal time by providing insights into both technical skills and career development, helping you to progress confidently in your field and shape your professional future. Naman Julka-Anderson (00:38) Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode. Jo McNamara (00:47) So this episode is part of Living With and Beyond Cancer series where we're going to be hearing from our guest Holly Stubbs and her partner Lee Wilkinson talking about cancer and pregnancy, and navigating the side effects of cancer treatment. So welcome to you both. Holly & Lee (01:02) Excited to be here. Jo McNamara (01:03) We're so excited. As soon as we kind of saw you both talking on Instagram, talking on TikTok, we were like, how great would it be to have Holly and Lee on your great kind of public figures in those spaces. So it's a pleasure to have you join us this evening. So for anyone who hasn't seen you, been aware of your kind of journey, would you like to just introduce yourselves, please? Holly & Lee (01:30) Yeah, so I've been spouting information out for quite a while online to divulge and further much of our personal life for quite a few years because I had a business online and it kind of came as part of the whole thing. And then it started off that I went, oh guys, I've got this lump on my tongue. I'm going to go and get it removed. It's all about pregnancy, blah, blah. And then I've kind of felt like oh, well, now I need to tell people that this isn't pregnancy related. need to close my business down. I need to give them a little bit more detail. And obviously, when I opened that kind of worms, everyone wanted to know more. And I thought, well, I suppose I've got nothing else to do. I can't work. I'm going back and forth to hospital every day. So we just started recording what we were doing. And then I kind of dragged Lee in on it as well. I am the complete opposite of what Holly's just said. Jo McNamara (02:23) you Ha! Holly & Lee (02:26) I was not online, did not take any photos whatsoever, just went to work, no online presence whatsoever, but obviously with the cancer diagnosis I fought, why not? Naman Julka-Anderson (02:40) Lee blink twice if you're safe feel like you've been dragged into this. ⁓ Holly & Lee (02:46) You're not socially awkward anymore though are you? I've dragged it out of the socially awkwardness. Yeah I suppose. There's a light at end of the tunnel. Naman Julka-Anderson (02:54) What was the online business, Holly? Holly & Lee (02:56) I used to make personalised clothes, so mainly for babies and just kind of like hentops and things like that. Naman Julka-Anderson (03:07) Sounds fun. And how have things been online, I suppose, transitioning from baby talk to cancer talk? Holly & Lee (03:15) Well, do you know what? didn't really use to talk about anything business related. I just used to talk about me. I would like go out with my friends and come back and tell, tell the gossip about what happened on the night out and, or just talk about what I was doing that week. And I think when you have a business online, you need to kind of sell yourself as well as your product. So I was a bit too chatty online probably, but it worked. Jo McNamara (03:27) you I was gonna say did your friends always be a bit like ⁓ no don't tell Holly anything because it would go online Holly & Lee (03:46) Sometimes they would say don't screenshot this message and I would... okay. Jo McNamara (03:53) So take us back Holly, you kind of told us really briefly about the fact that you obviously had a cancer diagnosis whilst pregnant, but talk us through that kind of diagnostic pathway. What actually did you go through? Holly & Lee (04:08) So it started off, I actually don't know how long I had the lump on my tongue because I didn't have any symptoms at all. We went to Disney for my son's seventh birthday and they have these giant mirrors with all the nice lighting and I was just brushing my teeth and I went, what's that on my tongue? And he was like, you've got an ulcer, you've got an ulcer. And my mom and dad were with us at the time. So I went, have a look at this. And my mom's a proper worrier. So she was like, bring the doctors now, bring the dentist, tell them that you're coming back on this date and you want them look at it. And I was just a bit chilled and I was like, we'll have a look when we get back. So I ended up bringing the dentist and the dentist was very chilled as well. He confirmed, yes, there's nothing wrong with you. He kind of said, you know, you don't smoke, you don't drink, I'm not concerned. So I came back with the good news. I told everyone, what are you worrying about? I don't smoke, I don't drink, I'm fine. Couldn't be anything else got to be pregnancy related that's what he said and then I went to see me midwife and I told her I went did you know you can get lumps on your tongue when you're pregnant and she went well I've never heard that before I went ⁓ right okay and one thing the dentist mentioned was that if it's painful it's more likely to be cancerous so that reassured us because it wasn't painful I didn't even know it was there like I say until we saw the big fancy mirror and I noticed it in the light and then a couple of weeks later it started to hurt. So again, my mom was like, you need to get that checked, ring them up. So I rang the hospital and I said, has the dentist contacted you about this? And they said, yeah, he sent us a photo, but we're not concerned so you're on the waiting list. So I how long is the waiting list? The waiting list is 42 weeks. So I went, oh, right. Well, it's starting to hurt now, so can you look at us any sooner? And she said, no not unless your dentist refers you urgently. So, my mum again, bless her, she had a look into it and said, if they suspect it's cancer, they have to refer you and give you an appointment within two weeks. So I the dentist and said, hello, can you change that referral? They're an urgent referral because it's hurting now. And they were a bit, you know, he doesn't suspect anything. We don't think there's any need to see how it goes. And I just went, no just refer us now, okay, yeah. And they did. And then I had an appointment at a diagnostic clinic. It wasn't even at the hospital where they said, okay, we'll remove it. It's a quick 15 minute procedure, but we're pretty certain it's a pregnancy granuloma, I think the word was. So I came back the week later, they removed it. I had like four injections in my mouth and it was the worst pain I've experienced in my life, bearing in mind what I've been through now. I don't know how that was so painful, but it was. So they removed it and I just had like this fat tongue for days. I was just walking around like, for days. And then they said, don't worry about it. It's definitely pregnancy related. We'll just send you results in the post. And then I got a call that said, can you come in the hospital tomorrow? And I went, why? She went, we just want to check up on you. I thought that was a bit suspicious but you know I was 31 weeks pregnant at the time so I thought maybe they just want to check that I'm eating because I'm pregnant maybe they just want to make sure everything's fine after the little procedure and when I went in we were in the waiting room just taking the mick out of the fact that we were there weren't we we were saying we we were like ⁓ god imagine if they said this imagine if they said that eeee imagine because the signs all over the waiting room, know, like clearly we didn't put two and two together. No, definitely not. The probably assumed that we knew from the waiting room, but we didn't. So then we went in the room, opened the door, and there was 10 doctors, midwives, and all sorts of people just in a little huddle around the corner of the room. And we both went... Just looked at each other, didn't we? were crazy. And as I sat down, the doctor went, do you know why you're here? Like, all proper serious. And I just went, well... obviously not. They were all like, all of the staff obviously knew what was happened and they were expecting us to burst into tears so they were all like looking really sad and he went well I'm sorry but we were wrong and it was cancer and I think I was just kind of in shock and I'm not a massive warrior so I wasn't really, I was shocked but I wasn't really bursting into tears and my god what are we gonna do. Whereas he nearly face planted the floor. He nearly fainted. The second they said that word, he was like, they did a lie down on the bed. They had to put him on the bed. It wasn't like Holly, are you okay? It was like, you all right Lee? Lee, do you need a glass of water? Lee, do you need help? Pulled him out of bed and everything. So it sounds terrible, but I was most bothered about the fact. Obviously I was getting close to end of my pregnancy so I'd met with my midwife the day before and I'd laid out my plans to her. I'd said, right I'm not having a hospital birth. I'm going to have a home birth. It's going to be really relaxed and chilled. It's going to be no monitors beeping and all that stress that comes with a hospital birth. So the first thing I said to the doctor was, can I still have a home birth? And obviously he thought this girl is mad. She's got no idea extent of what we've just told her she's more bothered about where she's going to give birth. So he kind of looked and went well this is the head of midwifery we'll let her decide after we've spoke. So I kind of took that as a norm and he said I think it was the it was the 9th of May that they told us and then 19th of May was it I went for surgery. So it wasn't very long after he kind of said right look we've got this operation booked in for you. That's going to be our next step. But today we were there at like 10 o'clock in the morning, weren't we? He went, so at 11 o'clock you're going to go to midwifery and they're going to show you how to do blood... thinners. Blood thinning injections. You've got to do them on yourself every day. It was like, why? Just to give us something else to be sad about. So you need to go and see her about that then you've got a scan at 12 o'clock, we'll let you get your dinner and then at one o'clock you're go and see our hospital dentist, then at two o'clock we're going to check in with with the Macmillan nurses. They had a full day out planned for us, we were meant to pick the kids up an hour later. So I had to ring my dad who obviously knew why we were there and I went, dad and he went, it's not good news is that? went, well, can you pick the kids up? He went, ⁓ right, okay tell us about it when you come home so me poor dad had to text me mom who was at work so she was breaking her heart racing home to come and pick the kids up with absolutely no idea what was going on because there's no signal in the hospital either so it wasn't like we could have just texted them and told them what was going on just had to quickly run outside ring them and then run back into the appointment so that was the beginning of the chaos wasn't it which was a very long story to get to the beginning but I like to talk so I hope you've got a long time for this podcast. But yeah that was the beginning and it took a while to get there didn't it? I mean I found it in February and it was kind of the end of May that something was happening. Jo McNamara (12:19) I think it's really important to hear just that entire process because... anyone who potentially discovers something that isn't right for them could easily have not necessarily pursued that appointment. And I think it just highlights how if you know in your head that something isn't quite right or that you've got a persistent family member who says, no, I think you need to go and ask for an appointment or, you know, follow that up. I think it just is showing how important it is that you do that. Lee, from your perspective. I know obviously the news hit you hard initially and you're passed out but how was it for you being a bystander especially when potentially you're seeing Holly deal with it okay and almost go into that kind of very practical mode? Holly & Lee (12:58) Definitely hit this hard, yeah. It was very, very hard, but we're very busy people. even the same night we got told Holly had cancer, I was aware that night for me brother's wedding, because me brother got married the next year. So we were extremely busy even around the time, because we went home, we were like, this is what's going on. Like obviously spoke between ourselves. Right. What do we do? Kind of, I don't know. We weren't really like... upset why we really I don't think we really had time to think about it because at first you were adamant you weren't good because he originally his brother was going to stay at ours the night before the wedding and then I said the night before he gets married he kind of come and stay with our three kids well we had to I were two kids running around taking my way somewhere so he ended up booking him some place to go to but it was only like a week before the wedding that they actually booked that so it was quite last minute so he was like, well, I'll just cancel it. I'll just tell him he can't, he's going to have to stay in his own house. And I said, you know, we don't want to upset him and didn't want to spoil his wedding. Even the next, the day after his wedding, obviously he was, he was upset, finding out the news. So just thought it was, I don't know. I didn't know the right thing to do, but I ended up going away anyways. And he got married and it was a really good day as well. Yeah. I think we managed to push it to the back of our mind. There was a couple of times where it was a bit emotional, like when they were actually getting married, I was watching thinking, well, we've never been married and actually I've never really wanted to get married until now when I'm thinking, what if I can't get married? What if I don't have that time to get married? So it does kind of make you reevaluate your choices. But I think what we did was best. We just kept it from them on the day. And then we told my mom and dad, obviously, and we told his mom and dad and told them don't see anything at the wedding. And then we told the rest of the family the next day because I was going in for surgery the following week. So we kind of didn't have a lot of time to keep it a secret really. I think that's how we dealt with it. Like there was just such a limited amount of time to actually even think about it. was like even after your tongue operation, three weeks later you were given birth. So it was kind of like at this point, what do we need to do? Well, we need to stop working. We need to do this. There was loads that we had to do and it was just constant busy, busy, Sort of running away from them thoughts and everything, putting them out the back of your head and just, I don't know. I like to be busy and just forgetting about all that, if I'm totally honest. And that was something. Naman Julka-Anderson (15:48) I think it's important to highlight though, isn't it, as younger people you have a lot more going on than what the traditional cancer patient person would be, you in their 70s or 80s is how we see normally on TV shows and stuff. A lot of people when they get diagnosed they don't necessarily have time to process it and like you said whether you were running away from it not you didn't plan for your brother's wedding to be the day after but it's important to focus on what's there in front of you and enjoy. Holly & Lee (16:05) Mm-hmm. Definitely. Naman Julka-Anderson (16:15) those moments with them, because otherwise I think it probably would have been quite different had you told your brother or if he'd stayed the night at yours as well. Holly & Lee (16:20) ⁓ definitely, Naman Julka-Anderson (16:26) I think as well with family members, especially as Jo said, when they are persistent, obviously it's good that they are on your back. And I think again, it highlights as younger people don't always put our health first and we're like, it'll be fine. We'll just get on with it. But even not having any pain and stuff, it's quite common for... lumps like this in the mouth that you don't notice it and that's why often even people later on who are a lot older in life and get diagnosed with tongue cancers they don't notice it they just think it's just something that's there and obviously like you're nearly to what 10 month wait for a dentist to get it out that's just yeah it's not nice to hear and it's so common across the UK at the moment with dentistry and especially if they're private dentists as well a lot of them don't even know that much about oncology specifically or the cancer pathways and stuff so yeah, it's really good to highlight as well that you went back and said, no, I want this. I people forget you can go back to healthcare professional and say, this is what I want. Holly & Lee (17:16) Scary really. Yeah, I think the fact that the stats on tongue cancer have never been updated as well is quite... It makes it harder for people. So I googled a couple of times like, oh, I've got a lump on my tongue, blah, blah, blah. And not once did I ever even consider having cancer because every single statistic was smoke, drink, over this age, HPV, which I had the vaccine when I was a teenager. was all things where I thought, well, there's absolutely no chance. My dentist and the surgeon who removed it in the first place never even suggested it was a possibility. And I think that's probably down to the fact that there's never been any research recently in people who were diagnosed because I would imagine if they did research recently, they would find that the stats are all over the place now and it's got nothing to do with smoking and drinking and all of those other risk factors that it used to be. Jo McNamara (18:17) Yeah, I definitely think a lot of the statistics are from 2018 and actually as a consequence of that we're definitely seeing more research being done in specific areas like bowel cancer, they're doing some research at the moment worldwide but for rarer cancers that isn't happening and so absolutely, you know, to kind of push people to take accountability for the fact that having this data can then help and support people in recognising signs and symptoms even. Holly, in terms of your treatment pathway then, what did you go on to actually have to eradicate your cancer and how have you found that treatment pathway? Holly & Lee (19:06) So the initial plan was a partial glossectomy which was the first thing I had. So that is removing part of my tongue. So you can get a full glossectomy which is like the full tongue removal. Luckily mine was only a small amount that needed removing. I think it was three centimeters. So that was planned in for a couple of weeks later. then the plan was to do a selective neck dissection not long after but it had to be after I gave birth because there was a high risk of it affecting the baby if I had it while I was pregnant. So most people would have both surgeries done at the same time which there was a few times I thought oh I wish they could have done them at the same time because I felt like well I was going through it twice because you know the side effects are very similar it affected me speech, me eating, me mobility and I thought oh this just feels wrong that I'm having to do it all twice rather than get out of the way at the same time but I could understand why they could see this cancer is in your tongue right now if we can take this out safely while you're pregnant why would we wait until after just so you can only go through it once so I could see why but at the time it was a bit frustrating so the side effects from the tongue operation were not as extreme as the neck dissection. It affected me speech mainly for a couple of days. Lee got us a, oh was it me? Was it my dad? A whiteboard. Was it you or my dad? I'm you credit here and I think it was my dad. it was your dad yeah. I'll take the credit though. It's my dad. My dad got us a little pink whiteboard for in the hospital to write down when I couldn't speak which do you know what at the time I thought I don't think I'll really need that because Lee was with us most of the day but then when he left on the night no offence to the nurses but they just assumed that I didn't need anything because I couldn't speak so I had my little whiteboard and I was like Paracetamol, Paracetamol, you haven't gave us medication I was holding my whiteboard up putting it in the faces all night so it did really come in handy for that especially I thought like, you know if you were like an older person you're by yourself you couldn't talk so what would you do you wouldn't have thought to bring a whiteboard I certainly didn't think that but yeah. Naman Julka-Anderson (21:23) It's interesting because on boards above patients, like above your bed, you write nil by mouth and stuff. But this is something that lot of patients who can't talk post head and neck surgery as feedback and like PALS reports is they never expect you not to be able to talk. They know that you can't eat properly or whatever, but they never write they might need a whiteboard or something. So I'm really glad you brought it up. Holly & Lee (21:29) Aye. Yeah, no, I was shocked like there was one point at like three in the morning she couldn't see me wipe off because it was so dark and I was thinking Am I just gonna sit here until the morning when someone can come and tell her that I medication? But yeah, it wasn't I didn't find the first operation too bad I think maybe I probably had the adrenaline of like my god what's happening and it all because it all happened so fast after finding out it was kind of more like, right, well, we're just gonna do this and then I'm gonna have a lovely baby and gonna have all that fun and then we'll deal with the rest of it later. So I was on ice cream and things like that. I had a NG tube put in for the surgery. They did say you might not need it, but we'd rather put it in when you're under anesthetic rather than put it in when you wake up and say, I can't eat. So I woke up with this elephant trunk hanging out of my nose. When I could speak I said to the nurse, you put this in while I was asleep so it was more comfortable yeah? And she went, mm-hmm. I went, so are you going to put this to sleep to get it out? And she just laughed and went, no. I went, ⁓ so how do you get it out? And she went, well, we just yank it. Well, I spent all day thinking about them pulling this thing out of my nose. I was traumatised at the thought, but it wasn't actually that bad in the end. So was out of hospital pretty quick after that one. Then I was planned to have baby Harry at, we were hopeful to get a 37 weeks, which I managed to do. I had steroid injections just in case he did need to be born early. It was more so we had scans after that operation and if they could see that the cancer had spread, they were gonna bring the labor on earlier just to make sure that they could get rid of it wherever it was. But all the scans came back clear. So I managed to get a 37 weeks and then I had an induction, which it wasn't the home birth that I planned, but they let us go in the pool and stuffed in there. They were very kind and they were helpful and lovely. And we got our lovely baby at the end healthy. So that was what was important. And then I think he was about four weeks old when I went in for the neck dissection. I could have done it pretty much any time after the surgeon said, you know, give yourself maybe six weeks to recover, but I was kind of like, I feel like I just want to get it out of the way because I'm thinking about it. I'm lying with my baby thinking, I'm going to have to leave this baby to go in hospital for potentially a week because originally they'd said, you can't take the baby in hospital with you. And I was breastfeeding. So I was kind of stamping my feet saying, no, no, there must be a clause to say breastfeeding moms can bring the baby in. And it was a pain in the bum to try and get anyone to listen to that. I really had to kick up a fuss with multiple people at the hospital and I don't know whether it's because we've got quite a small hospital maybe if we were in one of the bigger towns they might have been more aware of it and opened a roof but our hospital were just kind of like that's hard work for us you bringing a baby in but I'm too vocal about things so I didn't let them say no really I kind of said well I'll just knock them in if you don't let me bring the baby and then I was kind of like and I also need to bring Lee because I can't watch the baby. ⁓ Jo McNamara (25:06) Ha! It's such an important point though, isn't it? And this is where we bleat on about personalised care in the NHS all the time. This is the dream, you know, as healthcare professionals, we say advocate for your patients, personalised care, but then actually offering it and being able to support patients in personalised care just doesn't seem to happen. And it's so frustrating. And I'd love to know why it was for them that it was going to be more difficult for you because actually if we think about it a lot of the time friends and family would rally around and support that person in hospital anyway wouldn't they? So it's not extra work for nurses and support workers. I wonder whether it is just rules and regulations higher up the chain that it's kind of computer says no rather than actually this is what this patient needs and I would imagine You know, when you tell the story, Holly, does kind of come across as quite like, blasé, yeah, I had my newborn baby and I was just going in for my operation. But that must have been so difficult. I can't even imagine what that must have been like. Holly & Lee (26:19) it was more stressful that no one was listening. could kind of accept like, and you know, people used to say like, it's not fair why have you got cancer? And I would think, well, it's not fair that anyone gets cancer. You don't, you don't like see nasty people have bad things happen to them. So I wasn't thinking like, well, I'm a good person. I shouldn't have bad things happen to me. I just kind of thought, well, right, it's happening. So what we're going to do about it. But when I was trying to arrange getting the baby in hospital with us, I was, I was like, this is not fair. I'm not putting up with this. I was shouting and screaming at anyone who would listen. And what annoyed us more was my health visitor was too lax-y daisy about it. She was just kind of like, well, know, hospitals have germs. And I thought, ⁓ well, I'm going to bring those germs back home. I don't care about the germs. And I'm breastfeeding, which you keep telling me gets rid of germs for my baby. So it doesn't make any sense. These things you're saying don't add up. So that was probably the most stressful time throughout it all, trying to arrange getting him into hospital and then just saying, well, I'm not going to come in if you don't let my baby come in. And then they ended up agreeing and they said, but you're not going to be able to move your arms that much so you won't be able to hold the baby. I went, yeah, well, need to him as well. By the way, I went to bed as well because I didn't get a bed at all. When Holly gave birth, I slept on the floor. Naman Julka-Anderson (27:38) I was just about to say that. Holly & Lee (27:43) I had no beds at all so I was like I will come in but I want a bed as well. Yeah I had accompany him as well. Naman Julka-Anderson (27:49) Lee, it's a rite of passage to sleep in the chair. How dare you ask for a bed when the baby was born. ⁓ Fair. I'll let you off. Holly & Lee (27:53) Didn't even get a chair? No, there wasn't even chairs. There wasn't a chair. So that was the hardest part, I think, in that room after the neck dissection. That was very, very hard when Harry was just born. It was rough on you, wasn't it? Because obviously you had to do everything. I just kind of wanted the baby there as more of a bonding thing. And what I didn't realise was how emotionally hard it would be that I couldn't do anything. So he would cry in the middle of the night and I couldn't even really speak very well. I would kind of go, hey, hey. He was flat out asleep and I was just going, ugh, ugh, wake up. Because I didn't realize how much the neck dissection would affect me speech. With it being down here, you know, I assumed it wouldn't be in the same area, but because it was pressing on my throat, I could speak, but it wasn't really understandable. So me shouting in middle of the night when the baby was awake, he was just like, what is going on? And obviously he was awake and crying a lot at that age because he was only four weeks old and he wasn't used to being on a bottle because I was breastfeeding. So I kind of expressed a lot of milk, but then assumed after a couple of days, I will be able to breastfeed him again. What I didn't realize was I couldn't look down. So I couldn't even latch him on to be able to feed him. So Lee is having to latch him on for us and I would just kind of sit there and hold him and then go, you need to move him again. So he was like my carer and Harry's carer all at the same time. And that was really rough for you, wasn't it? I remember thinking like, I've been quite selfish to ask him to come in here because ⁓ I just wanted it for the bonding rather than thinking about how hard it'll be for him. Whereas if he was at home, you know, would have had family who could have helped at any time or who could have took the baby for a sleepover or whatever. So it was tough for you, wasn't it? It was, but it wasn't about me, was it? Jo McNamara (29:58) No, I was going to say Lee from your perspective, would you have preferred to have stayed at home retrospectively or actually was it a time that you also got to bond with Harry? Holly & Lee (30:05) ⁓ I would have if Holly didn't... I know it sounds a bit brutal but I would have if Holly wasn't bothered about Harry being at home with me but obviously Holly wanted Harry there so I was like why I'm not really gonna see it no. But it was there it was hard like obviously doing all that but it was also the other two boys the older one they were stopping at their Nana and Grandas we were in hospital for or three days. So we were kind of, I was coming home with the baby, the baby to her mom and dad and then I was taking the other two boys out, taking them to play areas for like a couple hours and then getting the baby and going back through. It was quite challenging. Jo McNamara (30:52) exhausting. It sounds exhausting. Holly & Lee (30:55) It was quite... It was exhausting, definitely. Jo McNamara (31:05) So Holly, tell us about radiotherapy, because obviously after your surgery, at what point did you then go for your radiotherapy treatment? Holly & Lee (31:14) Well, I was never meant to be going for radiotherapy. I was told the scans are clear. You don't need radiotherapy because it hasn't spread anywhere. And then there was a plot twist. When they did the neck dissection, they said, yes, it all looks great. There's no suspicious lymph nodes in there. Nothing that would make us think it's spread. And then I got the call again. Can you come in hospital tomorrow? And I went, ⁓ God. So we went back in and it was actually the woman on reception who gave it away and I felt a bit bad for her because she went I've checked you in for both your appointments and I went no I've only got one 10 o'clock and she went no you've got 10 o'clock with so-and-so and then half 10 with so-and-so and I went ⁓ no because we'd had so many appointments when they'd first told us I had cancer I just knew straight away that means that it spread and then I have to go back for more treatment because otherwise they wouldn't give us a second appointment. And we had a 40 minute delay for that appointment. So we sat in the waiting room for 40 minutes, didn't we? Thinking maybe, maybe it's just like a check up the second appointment. Maybe it's just nothing really. And convincing ourselves that we'll be fine. And then we went in and there was less people in the room that time at least because I wasn't, I wasn't pregnant. So they only had a few backups there ready for the drama and you didn't faint that time either. the doctor said, well, I'm really sorry, but it has actually spread to your lymph nodes. And I said, oh my God, but you did a scan and it came back clear. And he said, well, it's a micro, do you remember the word? I don't remember the word. think it was one lymph node, wasn't it? It was basically microscopic amounts that had spread. And he said, which normally we would kind of just say, we've probably swept it up with the neck dissection that we've done because the neck dissection wasn't essential. was a word it was it was a precautionary operation so they said I can't remember the statistics but maybe 30% of people who have tongue cancer have a spread to the lymph nodes that they don't know about so he said as a precaution we're going to remove them and then when they found out it's spread they said well actually it's jumped lymph nodes. It was so the small amount that they'd found the lymph nodes go in levels. I it was level one, two, three and four. And he said, what we would expect is that they'd be in level one and then the longer you have it, it would travel further down level two, level three, level four would be when you've had it quite a while and it's metastasis quite a bit. But he said, what yours has done is jumped straight from your tongue to level three. It's not in level one or level two. it's skipped metastasis he said and so it's quite complex which kind of means it's got a pass the cancer has got a pass to go anywhere in your body now rather than following the normal path it showed it's just jumped and did what it likes basically so he said we're going to need to go for radiotherapy and my first thought was ⁓ my god all of my teeth are going to fall out because i'm in a facebook like support group for people with mouth cancers and everyone who talks about radiotherapy talks about having the teeth removed and I thought well that's great I'm gonna have no teeth left and he reassured us that you go to the dentist they check your teeth if anything needs to be done with them they do it before radiotherapy starts because again that was my main priority I wasn't really thinking of all these horrible side effects I was thinking ⁓ no I'm gonna have fake teeth forever and then he sent us off to the dentist. The dentist said my teeth were fine. And the plan was to start radiotherapy four weeks later. And in two weeks time, I had to go and get the mask made, which was probably the most nerve wracking thing of all, because everyone tells you about how the mask's really scary and how you feel really claustrophobic. And it was at a different hospital, obviously. It was at a bigger hospital because our hospital doesn't deal with radiotherapy. It was more the unknown. That was a bit scary. I started off by getting the mask made, which was quite nice. Actually, do know what? went to Newcastle hospital and there's something about Jordies. They're just so friendly and kind. We went in and like the bloke was like, hello, pet your eyes. Come on in, come on in. And just took us in like we were a mate. You know, there was no like, ⁓ I'm so sorry. You've got to go through this. Cause sometimes I think the empathy's worse. I I just want to be spoke to like I'm a normal person. I don't want like people crying in front of us and saying, Oh, I feel really sorry for you. So it was nice. Jo McNamara (36:17) Yeah. Geordie's and therapeutic radiographers Holly, that's what it is. Like, dream team. Holly & Lee (36:31) Yes, that's right. They were just so friendly and relaxed and when you know the wood kind of warners like, ⁓ this might feel claustrophobic, this might feel uncomfortable. And I think because the warners, I expected it be like 10 out of 10 awful and it made it not awful. It wasn't. It was quite relaxed actually. felt like I was at the spa getting the mask moulded onto my face. It was like hot towels. If you've got claustrophobia, it would be awful but I don't so that was a win. So we had that done then two weeks later we started the radiotherapy. The day before my birthday which I thought was a bit of a kick in the teeth because it meant on my birthday I spent it in the hospital and I thought well you know after everything now happy birthday in hospital but again the Geordies they kept us upbeat in there you know sang happy birthday to us while I was getting my treatment done and the good thing about the treatment was it was in and out. There was no messing about. There was quite a lot of times that they were delayed, which, you know, was a big crap because we took baby Harry with us every time because I was breastfeeding and I still had this, I don't want to leave him. want this bond. I don't want someone else looking after him while I go to these appointments. So a lot of the times he would have massive explosive poos all the way up his back. And we were kind of stuck in the waiting room like, oh, we're going to have to deal with that. It's not as if the cancer ward has baby changing facilities because they don't expect to have babies in there so a lot of the time he was on the back of a toilet seat getting this explosive nappy changed freezing on the toilet seat while we were just chucking stuff into the hazardous waste bin which you know is probably for these cancer patients who are vomiting in the waiting room and we are chucking stinky napkins in them so it wasn't ideal but when we got in and out and there was no delays. It just kind of felt like something you have to do. It wasn't sad, it wasn't scary, it wasn't uncomfortable. It was just, right, we're done for the day, let's leave. It was only when we got to maybe week three that it started to become a major chore and wow, I don't like this anymore. The actual radiotherapy never hurt. It never felt uncomfortable. I was more bothered about there were blasts cold air into the room, which I'm assuming is because they think like a lot of people have the side effects of sweating and you know, this mask's right on your face, you might feel hot and so they're trying to keep you cool. And it's probably... Jo McNamara (39:09) We need it for the equipment, Holly. So it's all temperature controlled because generating x-rays creates heat. So that's why the rooms, as therapeutic radiographers, we always wear like cardigans, still bare below the elbow, but you quite often see us wearing cardigans because we're always working in the cold because it's to regulate the temperature of the machines. Holly & Lee (39:18) Right. Aye. Well someone also told me it was that you so you don't fall asleep in the machine. I thought who could fall asleep with this on? Jo McNamara (39:39) That just goes to show you you should only listen to healthcare professionals. ⁓ Holly & Lee (39:43) Yeah, very true, very true. Naman Julka-Anderson (39:46) I've had people who've had had a neck treatment fall asleep in their mask and we've woken them up at their or even like pelvic patients that just have a nap and you can hear them snoring. Yeah. Holly & Lee (39:56) Well I was never that relaxed. I was very chilled but I was never that relaxed. I was aware of it. sometimes they didn't put the music on and I was there thinking where's the music? I've just got to listen to like the air blowing through. So I should leave them a patient feedback function now please put music on every day. But the cold air used to make us feel like I was going to sneeze. So I would spend the five minutes or whatever it was in the mask thinking if I sneeze, it's going to go all over my face. I'm just going to like sneeze everywhere on us. So that kept us going throughout the appointment because it distracted us from what was going on. I just thought about sneezing all over my face. And when I lost a lot of weight, think by week three, I'd lost a stone and then week four, I'd lost another stone. So I got a new mask made, which again, wasn't uncomfortable. The staff were really helpful and kind of said, this is too loose now. We need to it again. was the side effects were rough from week three onwards. It was mainly ulcers and probably the worst one was this dry haven that was like bringing up all sorts of like green goo and thick lumps. Sometimes I would spit things out that I thought, how is that physically fit down my throat because it was so big and it just felt disgusting as well, like I felt pooly, you know, whereas the rest of this I've kind of gone, when this is over, I'll be fine. When this surgery is done, I'll be fine. The radiotherapy was the first time I disabled. I felt like people needed to help us. I feel like I needed, I couldn't speak to people really because it hurt. So I was doing a video every day to kind of update people on what the side effects were and just to show people who were going to go through it how the side effects progress. And it got to the point where the only talk that I was doing was that one minute video. And some days I wouldn't record it until like nine, 10 o'clock at night because all day I would be saying to myself, I don't want to talk. don't want to talk. But I'm so stubborn that I couldn't miss a day for the video. I just do it. So it was rough. And I think it was hard on you as well because you wanted to help, but there's not a lot of things you can do to help. None really. Especially the hospital were giving us like medications and things that a lot of them I couldn't have because I was breastfeeding. So you know like Lee was trying to be really helpful and say like well you know logically we can bottle feed him but again I was stubborn and I was like I'm not going to stop breastfeeding him because of cancer like if I stop breastfeeding him I want it to be my choice I don't want it to be forced upon us so I refused all the medication I just had paracetamol and the there were some mouth gels that I had to get rid of the ulcers and the ulcers were just like giant burns. So by week three and a half, I wasn't eating anything. I'd slowed down on what I was eating week two and week three, but by week three, was kind of like I was looking to drink water. You were on the milkshakes weren't you? At that point. Yes, so I had the protein shakes off the hospital. They'd kind of weirded and gone, right, you've lost a bit of weight. We're going to give you some of these. Just try them out. If you can have soft foods, that'll be better. But I'm quite a fussy eater. Well, no, I'm a really fussy eater. So I was kind of the worst possible patient to get tongue cancer because they were like, just have mash, but you can't have this and you can't have that. And I was like, I don't want mash then have custard and I was like I don't like custard and they like but it's not about if you like it it's about surviving and I was like well no I just I can't eat foods I don't like and you did think you might eat them when you've got no option didn't you because he's always said you can eat anything if you're hungry and I have proved that is wrong I can't eat anything if I'm hungry Naman Julka-Anderson (44:03) But you've also Jo McNamara (44:04) I love that. Naman Julka-Anderson (44:04) proved it because you're stubborn. Holly & Lee (44:06) Yeah, she's very, very stubborn. That's the thing. You've just proved your arse stubborn. That could just be your headline. Holly is really stubborn. But yeah, so then I got week four and lost another stone. And obviously that one was one that the hospital were quite worried about because that was a stone in a week. I wasn't that fussed because I'd been pregnant. So I had extra weight to lose, which was the benefit of being pregnant before this because if this had happened normally, well, before this, was a fitness instructor, so I was always quite a good weight. And I thought, if I wasn't pregnant when this happened, I wouldn't have had any weight to lose. I don't know how I would have done it. So although the hospital was saying, right, this is concerning, you've lost a stone. I was going, yeah, but I'm still not a healthy weight. I'm still overweight for what a person my height would be but I had baby four weeks ago, so you probably wouldn't have checked that normally. So they were kind of pushing for a feeding tube and I was pushing for not a feeding tube. ⁓ I just didn't want one. I didn't like the feeling of the one I had in hospital. They also said, which I thought was crazy, that I'd have to stay in hospital for a week so that they could put it in, assess the feeding make sure that it was feeding properly and that I knew how to do it, which all makes a lot of sense. But when you've got three kids at home, I thought, I'm not going to hospital for a week to get a tube that I don't even want. If they'd said we can put it in now within five minutes, by week six, I probably would have said yes. But at week four, when they said you've got to stay in for a week, I said, you've got no chance. So I took more milkshakes home. I didn't really drink the protein shakes because they were horrible. So we found a milkshake from Marks and Spencer's that I liked, which was like a white chocolate flavor. Although I had no taste, I couldn't taste it. So you would assume that I would eat food I didn't like, but I still couldn't do it. I could smell them and the smell put us off. So I had these white chocolate milkshakes from Marks and Spencer's that all of my friends rallied round to get, them. Like I would wake up to five milkshakes on the doorstep. And then it got to the point where I thought, I feel sick at these milkshakes, I can't have any more. So I ended up not actually drinking them in the end. But the lack of taste was really strange. I feel like because I lost the taste, I also lost texture because after the radiotherapy ended, I eventually started to get taste back. And, but even when I didn't have the taste, I had the texture. So during radiotherapy, I lost me taste but I also had a weird texture on my tongue because of the ulcers which made eating really uncomfortable and my mom had said, well you can smell does that not help you want to eat? And I said, no it does the opposite because I can smell how nice that food is. It's making us annoyed that I can't taste it. So I thought it was just the fact I couldn't taste it until radiotherapy ended and I still couldn't taste but my tongue was healing and I could now feel the texture of things and it felt normal. Because then I started eating a bit more even without the taste. So week five and six radiotherapy were just a write off. By week six I was in bed. I was barely even able to walk the stairs and that's probably the start of the fact I wasn't eating. I was so weak that I couldn't even hold the baby. You had to like hold the baby next to hers or the kids would ask for a cuddle and I was kind of like, hmm, that was my cuddle. If I ever went downstairs, I had to crawl back up and that was me done for the day. I couldn't move again. And obviously my mom and dad and Lee were worried in the sense that, well, if you don't get out of bed, you might get worse. But I physically couldn't. I didn't have the energy to do it. And the fact that I'm stubborn tells you that I must have been bad because I couldn't, I couldn't get out of bed. So it didn't make us really think about elderly people who go through this who are already weak. I was fit and healthy when I started radiotherapy and within five weeks I was an absolute mess. I couldn't do anything for myself. So once the treatment ended the hospital did warn us it's going to get worse before it gets better. Week five just sit in or weeks one or two after treatment are quite uncomfortable. It ramps up because the radiotherapy is built up in your body. So I kind of thought, how could it get worse than this? Surely it can't, but it did. It did. I lost another stone. I lost three stone in total, but losing the stone after the treatment ended felt a lot harder because I was already so weak. It felt like I didn't have a stone to lose. Although I probably did, just losing it so quick made us go downhill quite a bit. But once the ulcer's healed, maybe. Week nine, 10, I started to eat a bit better because I could feel the texture of things. And I was excited every week thinking, my taste is gonna come back eventually. I'm gonna get taste again. I'm gonna have a pizza. The hospital would bring us in for meetings with the dietician and they would say, what are you excited to eat? I would say, They would go, something else, just pizza. I just want a pizza. And they would go, right, that's our goal. We're gonna get you a pizza. And I think by weeks, by month three, I started to get a little bit of taste. I could taste beef flavors, which was odd. I could taste gravy, oxo cubes. And I thought, I kind of assumed that your taste would come back all at once, that it wouldn't be there one day and the next day it will be there completely. So I kind of felt like I'd been ripped off a bit when I started tasting gravy and nothing else. I thought, well, I don't want to drink a cup of gravy. want... I want to taste the full Sunday's dinner, not just the gravy. So I mentioned that at the dietitian and I think the word she said was umami flavors and they were quite good in suggesting things that had umami flavors and that would be suitable to my limited palate. So they suggested oxtail soup, which I had and I loved only when it was blended. I couldn't deal with the lumps. It did something. I didn't like it. So poor Lee would blend it every day. And some days I would go, oh, I really fancy that soup, but I can't be bothered to blend it. I never blended it once. He blended it every time. And he would go, well, I'll blend it for you. I want you to eat. him. So he was constantly blending soup for us, even though it was already blended really in the tin. And then I found out what oxtail actually meant. And then I refused to eat it anymore because it just, it didn't sit right with us. So we lost that food. But by month, four, I think I had a lot of taste back and I didn't really notice when everything fully came back because I had enough to where I felt like, okay, I can enjoy food. The turning point for me was I had such a dry mouth from the radiotherapy, which they tell you that's gonna happen, but you can't explain what that feels like until you've got it. My tongue was like stuck to the roof of my mouth when I was waking up in the morning. And even just like, trying to spit. I didn't have spit. I couldn't make spit. And I started going a bit crazy. Like I was saying to him, try and make spit in your mouth. And he was like, well, yeah, I can. And I was like, well, I can't. I didn't know that was going to happen. I thought, yeah, you'll have a dry mouth and you can just make spit like you normally would. But no, no, you can't. So it obviously damages your saliva glands and that's why. But I hadn't looked into it too much to know that. So I found out purely by being online, this wasn't suggested by any doctors or oncologist or anyone who should have really been suggesting it. Someone online said, you can get a medication that activates the saliva glands and encourages it to work better. And it's made for people who have saliva gland issues, not just cancer patients. So I just rang my GP and again said, you're going to prescribe me these tablets and I'm going to try them. Okay. And the doctors were lovely and said, okay, yeah, why not? And within a day, ⁓ I remember vividly being able to taste food properly. I don't know how much taste I had before that, but I remember eating food and thinking, wow, this tastes nice. And I'm assuming it's because of the fact that the saliva was moving the food around to all of the taste buds in my mouth. And it was literally the next day I felt, wow, that's a big change. Initially I thought, is this in my head? It can't work that quick. But it's been great ever since. The dry mouth isn't that bad. I take three of the tablets a day. I don't know exactly how you pronounce it, but I think it's called Pylacarbine, Pylacarpine or something like that. And it works amazingly, amazingly. I don't know what I would have done without it. I honestly feel really sorry for people who haven't been recommended it because like I say, I mentioned it to my doctor that my mouth was dry and he said, I've got a patient who's a hairdresser. Do you know those spray bottles that you put like hairdressing stuff in? He went, get one of them and put water in and spray your mouth. And I thought, how rare you want me to walk around spraying my mouth with a bottle of water and I was drinking loads of water so water clearly doesn't fix it. Maybe the sprain makes a difference but... Naman Julka-Anderson (54:15) There's even better tip from that is if you get one those small bottles, put maybe just under a third olive oil and top it up with water, mix it. That is even better than just spraying water. And the Pilocarpine it doesn't work for everyone. For some people, there's so much saliva, it's almost like there's Niagara Falls in their mouth. So it's usually our last option, if I'm honest. So yeah, just for anyone listening, it doesn't always work for everyone. Some people absolutely just can't tolerate it at all. Holly & Lee (54:26) Really? I'm ready. Very good. Naman Julka-Anderson (54:45) but that's like the final thing we would try and do. Holly & Lee (54:48) ⁓ I'm today, look here. Jo McNamara (54:49) And reason you could taste more is because saliva is the first in the digestive pathway, so it breaks down the enzymes in food, so that's what then releases the flavours, so that's why without saliva you can't taste much. So there you go. Holly & Lee (55:07) We had about three takeaways that day didn't we? We went on a proper rampage didn't we like? I can taste the food! We need to eat loads! And then I was worried it was going to disappear the next day because my body was just used to the tablets so we just ate so much and it was great wasn't it? And I wouldn't say my taste is 100 % back now so I'm like six months post radiotherapy ending now. I wouldn't say my taste is completely there but some days I get 100 % taste and I can tell Jo McNamara (55:19) Ha Holly & Lee (55:37) first thing in the morning I eat something and I'm like, ⁓ today's a good day, we need to go out for loads of food. But most days I would say I have 70 to 80 % of what I used to be able to taste. It's just a little bit duller than what food used to taste like. It's manageable, it's not something where I think, I can't live like this. It's manageable with the tablets and clearly I've just been lucky that they work for me. Jo McNamara (56:09) Ah I reckon we could probably talk all night to both of you. I think we need a part two on maybe like side effects, late effects, but we always end our podcast episodes with top tips. So are there any top tips from either of you, both of you on anyone listening who potentially is going to go through radiotherapy or for any healthcare professionals that potentially might be able to help improve practice based on your experiences? Holly & Lee (56:38) As somebody caring for somebody who's going through that treatment just all I could see is off my own personal experience just get really really busy that's what I would see and just I don't know just keep busy so you're not in your not in your brain as much. I think you were very good on asking what I wanted as well and although you didn't want to listen to everything I said you did listen so like he would say you need an ace and I would go I don't need ease. It hurts when I eat. That's because I'm shot at night yet. Naman Julka-Anderson (57:16) I was going to say that was like karma right there. You can see Lee smiling. Holly & Lee (57:18) It wasn't it? Automatic. No. Yeah, so a lot of the times he would tell us what I needed to do from a caring about his perspective and I would kind of disagree with him and say well it hurts to eat, I don't want to eat and you would listen wouldn't you and you would kind of come at different angle maybe okay well it hurts to eat, what doesn't hurt to eat? Rather than arguing with us and saying, but you need to eat, you know, you're going to be really pretty if you don't eat. You would find ways around it, wouldn't you? Yeah, it was, it was the milkshakes that was the hardest. was getting them milkshakes down. Yeah. But I think for professionals in the role, it would be great if they could look at the individual patient, like what you mentioned earlier, I think because most people in this situation are elderly, the Kind of. The way the hospital speaks to you is as if you are elderly and as if you are going to have the same side effects as Bob who's 92 and living alone, struggling with no help. And especially in pregnancy, I think there was a lot of things that should have been said that weren't. There was not much aftercare in terms of, I was asking and asking over and over again, can I have a general anaesthetic while I'm pregnant? You know, they were giving us the surgery while I was pregnant. Is this safe? No one really knew. It was a lot of, I was asking the questions rather than them saying, we've got this plan in place. You don't need to worry about it. We're going to tell you what's going to happen and it's all going to be fine for you. Where the worry was kind of put on me. And I think the radiotherapy in the hospital, the staff were brilliant, they were very much chatty and talkative and positive and they were very helpful with side effects. So we had like a meeting every Monday I think it was with the doctor who could say right what's wrong with you, what can I help you with but also the radiographers when I came in they would say you're looking a little bit down today are you all right and I might say my mouth's killing and they would go well tell you what I'll ask your doctor to prescribe this and then they would just do it for us and the next day I would come in and it would be there. There was no waiting in pharmacy, there was no having to see the doctor and feel like I was stuck in the hospital all day. They would just take care of it and that was really helpful for us. Jo McNamara (1:00:02) Amazing. Well, as I said, we've only got through half of all the questions we wanted to ask you, so I definitely think we need a part two. But a huge thank you to our guests, Lee and Holly, for sharing so openly their experiences. Thank you for listening to Rad Chat with myself, Jo McNamara and Naman Julka-Anderson. Holly & Lee (1:00:21) Thank you. Jo McNamara Rad Chat Host (1:00:24) So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate. Naman Julka-Anderson (1:00:33) Stay up to date with the latest radiotherapy and oncology advancements by liking and following us on social media and hitting subscribe wherever you get your podcasts. Jo McNamara Rad Chat Host (1:00:43) Please do join our supportive community designed by professionals who understand the unique challenges of working within radiotherapy and oncology. Follow us across all of our social media channels and make sure to check out our website www.radchat.co.uk. Together we're actively working to improve our profession and make a lasting positive impact on cancer care. Naman Julka-Anderson (1:01:06) It goes without saying that we can't achieve this alone. It takes all of us working together to create real change. That's why we value every voice and every contribution. We ask that you listen and learn and spread the word, share your story with us and connect with us. Jo McNamara Rad Chat Host (1:01:21) And if you have liked this content, why not buy us a coffee? Go to our website and drop us some love. Thank you all for listening and take care.