1 00:00:00,000 --> 00:00:05,160 This podcast contains the personal stories, opinions and experiences of its speakers, rather 2 00:00:05,160 --> 00:00:11,500 than those of Breast Cancer Now. Welcome to the Breast Cancer Now podcast, providing support and 3 00:00:11,500 --> 00:00:17,440 information to anyone affected by breast cancer. I'm Laura Price and I'm the host of the Breast 4 00:00:17,440 --> 00:00:25,220 Cancer Now podcast. I'm a food writer and author and I live with secondary breast cancer. Today we 5 00:00:25,220 --> 00:00:30,120 are talking to Hannah Gardner, who you may know from her Instagram handle Real House of Hannah. 6 00:00:30,120 --> 00:00:34,700 Hannah lives with secondary breast cancer and is part of Breast Cancer Now's campaign to get access 7 00:00:34,700 --> 00:00:40,460 to the life-saving drug in HER2 on NHS England. You might have seen Hannah's friend Nadia Sawala 8 00:00:40,460 --> 00:00:46,460 talking about the campaign on ITV's Loose Women. Before her diagnosis, Hannah was a clinical 9 00:00:46,460 --> 00:00:51,800 trials manager and since her diagnosis she has taken part in a trial so you'll be able to get her a 10 00:00:51,800 --> 00:00:56,140 perspective from both sides. Hannah, thank you so much for joining us and welcome to the Breast 11 00:00:56,140 --> 00:01:01,360 Cancer Now podcast. Thank you for having me. I'm excited to be here. I know you've had multiple 12 00:01:01,360 --> 00:01:06,360 breast cancer diagnoses over the years so could you start by telling us how old you were when you 13 00:01:06,360 --> 00:01:13,240 were first diagnosed and how you got that diagnosis? God, I was 26. I was doing something 14 00:01:13,240 --> 00:01:19,440 really random. I was setting up a treadmill at home. I tried to get myself to the gym and thought, 15 00:01:19,440 --> 00:01:25,340 no, let's buy a cheap and cheerful one from our goer, get it home and hopefully stick to some sort 16 00:01:25,340 --> 00:01:31,260 of fitness program. So weird situation, setting up a treadmill and it turns out they're really 17 00:01:31,260 --> 00:01:39,180 heavy. I pulled, no, I thought I pulled. I was being dramatic. I thought I'd pulled a muscle so I sat 18 00:01:39,180 --> 00:01:44,980 down and started rubbing my chest area and it was from that that I came across like an unmistakable 19 00:01:44,980 --> 00:01:54,280 lump and I remember thinking, how have I not felt this before? Yeah, so it was at that point I 20 00:01:54,280 --> 00:01:59,120 thought, you know what, it probably isn't anything. I'm young. I was under the impression 21 00:01:59,120 --> 00:02:05,360 that having breast cancer at such a young age would take a significant family history. I was 22 00:02:05,360 --> 00:02:12,400 mistaken. I took myself off to the GP, said I've got a lump. I mean, initially I did receive a little bit 23 00:02:12,400 --> 00:02:21,380 of resistance from them. They said they couldn't feel anything and I did something which was a 24 00:02:21,380 --> 00:02:29,260 little bit unlike me back then. I pushed. I said, well, no, actually it is there and I think I might 25 00:02:29,260 --> 00:02:34,420 need to get checked out and she said, okay, and I know that I'm quite lucky about that because some 26 00:02:34,420 --> 00:02:41,160 people have been sent away not once multiple times and really have had to push to get that referral. I 27 00:02:41,160 --> 00:02:47,220 didn't have to push too hard but I'm glad I did say because yeah, I ended up being diagnosed with 28 00:02:47,220 --> 00:02:57,080 stage 2A, grade 3 breast cancer and after you know how it is initially they don't necessarily know 29 00:02:57,080 --> 00:03:05,540 the extent of things. Once I'd had an MRI it showed that it was almost 10 centimeters big. So to think 30 00:03:05,540 --> 00:03:11,260 that someone said they couldn't feel that lump and to think I had never felt it just goes to show that I 31 00:03:11,260 --> 00:03:17,580 was neglecting to check myself. That reminds me of when I first found my lump which was in January 32 00:03:17,580 --> 00:03:23,840 2012. I went to the doctors as well and said I've got a lump here and they said, no, that's your rib cage. 33 00:03:23,840 --> 00:03:29,660 Oh my god, your rib cage. Okay, that might be my rib cage but there is a lump there. Feel a bit more, make 34 00:03:29,660 --> 00:03:33,730 a bit more effort and then they were like, oh yeah, there is a lump there. So you just have to push back. 35 00:03:33,730 --> 00:03:41,220 So yeah, so you were 26 then. Did you have chemotherapy, surgery, the works? The works is 36 00:03:41,220 --> 00:03:47,480 exactly the full shebang. I had a mastectomy. I had a lymph node clearance which really made me 37 00:03:47,480 --> 00:03:52,660 nervous at the time with the whole lymphedema risk. That's something that really played in my 38 00:03:52,660 --> 00:03:58,100 mind and then chemotherapy. I didn't have radiotherapy back then actually. I had 39 00:03:58,100 --> 00:04:02,860 chemotherapy and then started to moxifen. You've mentioned in the past that you weren't actively 40 00:04:02,860 --> 00:04:07,060 checking your breasts. Did you feel you were taken seriously when you were taken to the doctor and you 41 00:04:07,060 --> 00:04:14,380 went to the doctor? So initially I feel because we know now that it was a 10 centimeter lump and it was 42 00:04:14,380 --> 00:04:22,760 mixed with DCIS and IDC so it wasn't all invasive cancer, about two centimeters of it was. Yeah, to 43 00:04:22,760 --> 00:04:28,520 know that it was 10 centimeters big and that it was really palpable and big enough for me, someone who 44 00:04:28,520 --> 00:04:33,360 thought that I probably wouldn't have breast cancer to go and get myself. I still got myself 45 00:04:33,360 --> 00:04:39,740 checked. It worried me that much for them to say they couldn't feel it. I feel was a bit of 46 00:04:39,740 --> 00:04:45,940 resistance and maybe I don't know what it is because we do hear the story quite often with 47 00:04:45,940 --> 00:04:54,700 younger women and I don't know if it's because the words rare have been thrown out but is it rare? I 48 00:04:54,700 --> 00:05:00,940 mean as a standalone figure I think the statistic is quite significant enough that younger women 49 00:05:00,940 --> 00:05:07,600 are affected by breast cancer. But yeah, so I don't know what it is that they'll see a young person in 50 00:05:07,600 --> 00:05:13,760 front of them but perhaps have some sort of bias. I don't know what it is but yeah, I did feel that there 51 00:05:13,760 --> 00:05:18,680 was a little bit of resistance but I pushed back. I'm quite proud of 26 year old me that normally 52 00:05:18,680 --> 00:05:24,180 would have listened to a doctor and thought you know everything fine, I should be on my way but no, I 53 00:05:24,180 --> 00:05:29,540 went with my gut and said that I'm worried, I think it just needs a little bit of further 54 00:05:29,540 --> 00:05:34,840 investigation. Absolutely, yeah you should be proud of 26 year old you and for advocating for 55 00:05:34,840 --> 00:05:41,420 yourself and also I always sort of feel the need to point out that I think I've heard over the years 56 00:05:41,420 --> 00:05:46,420 lots of women saying I have a lump, should I be and I've been told it's nothing, should I be going 57 00:05:46,420 --> 00:05:53,740 back, should I be going back and of course in a lot of cases it is just a cyst and it's not cancer so I also 58 00:05:53,740 --> 00:05:58,280 don't want to scare people but I think sometimes it's that balance isn't it? Yeah, I think 59 00:05:58,280 --> 00:06:04,160 sometimes when you have that feeling or if you've allowed time to go by and you still feel it there 60 00:06:04,160 --> 00:06:11,080 then maybe that's the time to go back and get another check. So your story is very similar to 61 00:06:11,080 --> 00:06:15,540 mine in that you were diagnosed with secondary breast cancer almost 10 years after your primary 62 00:06:15,540 --> 00:06:24,840 diagnosis. How did you find out your cancer had spread? Of course so I've been diagnosed with, 63 00:06:24,840 --> 00:06:32,500 well I've been told you have cancer from zero four times now so I didn't go straight to a secondary 64 00:06:32,500 --> 00:06:40,340 diagnosis. After my primary in 2013 I was diagnosed with a recurrence in my chest wall a few 65 00:06:40,340 --> 00:06:46,960 years later which is when I ended up having a mis, well I had a wide local excision because I'd 66 00:06:46,960 --> 00:06:53,280 already had a mastectomy and ended up completely flat so I wear a prosthetic on my left and I had more 67 00:06:53,280 --> 00:07:00,880 surgery, more chemotherapy and then I had radiotherapy and a different hormone therapy and 68 00:07:00,880 --> 00:07:10,100 then despite that second bout of treatment it came back again and this time it was under my arm so I had 69 00:07:10,100 --> 00:07:15,560 more treatment then. I didn't have chemotherapy they said at the time that it might not be worth it 70 00:07:15,560 --> 00:07:20,600 because you don't seem to, it's not, it doesn't seem to have worked in the past, maybe it's not 71 00:07:20,600 --> 00:07:25,040 worth it and I don't know how comforted I felt by that at the time but I did have surgery to remove it 72 00:07:25,040 --> 00:07:39,960 and radiotherapy but yeah it was in June 2022 that I was told the cancer is in your liver and yeah it was 73 00:07:39,960 --> 00:07:48,260 really, despite having been told you've had cancer before this it hit completely different 74 00:07:48,260 --> 00:07:56,980 knowing that well knowing full well that it's incurable and that you know it's life limiting it 75 00:07:56,980 --> 00:08:05,760 was a lot to take in and I felt that the very thing I'd been trying to outrun for years because once you 76 00:08:05,760 --> 00:08:13,680 have breast cancer primary cancer you know treatment might finish but the worry can continue 77 00:08:13,680 --> 00:08:21,360 and it's traumatic for various reasons but there's also that kind of cloud that you know you 78 00:08:21,360 --> 00:08:28,000 live under that makes it sound like life's all doom and gloom you have a lovely wonderful life but for 79 00:08:28,000 --> 00:08:33,740 me there was always a niggle that it might come back and if it does come back is it going to be stage four 80 00:08:33,740 --> 00:08:41,039 and then it happened it happened and it happened when my daughter was two years old and it sucked it 81 00:08:41,039 --> 00:08:48,360 really sucked I am sitting here nodding my head because I understand so well all of those feelings 82 00:08:48,360 --> 00:08:55,800 of having breast cancer and always wondering and worrying that the worst could happen and then the 83 00:08:55,800 --> 00:09:01,180 worst happens and I think our worst happened within weeks of each other because mine was early 84 00:09:01,180 --> 00:09:07,640 July 2022 how strange is that and yours was June and I remember at the end of June I think it might have 85 00:09:07,640 --> 00:09:14,360 been the 30th of June was when Deborah James Dame Deborah James died yes and so I was approaching my 86 00:09:14,360 --> 00:09:19,900 diagnosis and all we could see on the TV were these constant updates of Deborah getting sicker and 87 00:09:19,900 --> 00:09:26,040 sicker and we were seeing her death on TV and it really really resonated with me because I felt 88 00:09:26,040 --> 00:09:34,160 that I had this diagnosis coming I can imagine our summers of 2022 were quite similar it was very 89 00:09:34,160 --> 00:09:42,240 lovely wasn't it yeah it was it was hot how how did you feel that that summer if you can I just I was 90 00:09:42,240 --> 00:09:50,960 gutted I was absolutely gutted and I was also angry at myself I mean we always talk about cancer not 91 00:09:50,960 --> 00:09:57,260 just affecting the person who's going through it it affects you know people around them you have 92 00:09:57,260 --> 00:10:07,060 this radius spins out and the diameter so encircling family loved ones friends and yeah I'd 93 00:10:07,060 --> 00:10:16,500 caught up my little girl in all of it there she was at the epicenter of it and it's that whole thing of you 94 00:10:16,500 --> 00:10:22,380 know cancer doesn't just affect you physically it affects you emotionally mentally financially it 95 00:10:22,380 --> 00:10:33,580 affects your home life your work life and that doesn't end when your life ends that remains for 96 00:10:33,580 --> 00:10:40,060 those very close to you for a long time and I just hate the fact that my daughter is going to 97 00:10:40,060 --> 00:10:47,640 experience that you know she doesn't deserve to be robbed by cancer you know robbed of a mum and the 98 00:10:47,640 --> 00:10:54,300 love protection comfort that we give to our children as mothers you know she deserved the 99 00:10:54,300 --> 00:11:01,640 world what what are you angry at yourself for that she won't have a mummy to take her to the park like 100 00:11:01,640 --> 00:11:08,440 all our other friends will I think it's that you know she's innocent in all of this and yeah I know 101 00:11:08,440 --> 00:11:16,960 well I you know I'm logical I know it's not my fault but I help but feel guilt that she's entangled in 102 00:11:16,960 --> 00:11:25,020 all of this and yeah and that's just the reality of secondary breast cancer that children well you 103 00:11:25,020 --> 00:11:30,500 know partners mum's dad sisters brothers colleagues were all affected but it just it gets me 104 00:11:30,500 --> 00:11:36,580 when you know innocent kids that perhaps can't comprehend what's happening don't have that 105 00:11:36,580 --> 00:11:42,220 understanding and yeah what is it like being told you have secondary breast cancer when you have 106 00:11:42,220 --> 00:11:50,200 such a young child yeah I'm just looping back to before it's just gutting it's heartbreaking I am 107 00:11:50,200 --> 00:12:01,540 really sad that just the little person is potentially not going to have a parent and yeah it 108 00:12:01,540 --> 00:12:07,620 really it gets me she meets she's my absolute world and like it's it works both ways because yes I'm sad 109 00:12:07,620 --> 00:12:16,300 because of that impact that might come but equally like she is my reason like the light of my life the 110 00:12:16,300 --> 00:12:22,480 best thing that has ever happened to me when I have primary breast cancer I'd always have this image 111 00:12:22,480 --> 00:12:30,280 of wading through like a slurry of shite like you're like this river wading through it but I'm 112 00:12:30,280 --> 00:12:36,360 going to get to the other side so as rubbish as it is I need to keep moving forward one foot in front of the 113 00:12:36,360 --> 00:12:42,620 other and I will get to the other side and get through it. With a metastatic breast cancer I 114 00:12:42,620 --> 00:12:47,940 don't feel like I'm going to get out onto a bank and it's not going to be over so I'm kind of in this 115 00:12:47,940 --> 00:12:54,680 little bit of a crap situation but I can step into the pools of joy I can find the joy every single day 116 00:12:54,680 --> 00:13:02,720 find a reason to laugh smile and just to be me be the essence of me you know because I'm not cancer is a 117 00:13:02,720 --> 00:13:07,900 huge part of my life and that's inevitable because of being in and out of the hospital and taking being 118 00:13:07,900 --> 00:13:13,900 on active treatment but you know I'm still Hannah and I'm still Lila's mum and yeah I still want to 119 00:13:13,900 --> 00:13:21,800 live life and Lila brings about so many you know moments of those glimmers that see me see me 120 00:13:21,800 --> 00:13:27,080 through yeah. And how do you juggle with motherhood with your treatment and your illness? 121 00:13:27,080 --> 00:13:35,420 The fatigue is that's what gets me and I've been dodging chemotherapy like neo in that end scene in 122 00:13:35,420 --> 00:13:41,520 Matrix for about nearly two years now and it's because having had it before we know that it does 123 00:13:41,520 --> 00:13:47,840 wipe you out at least for those first few days and then a little bit later on but you can bet your arse 124 00:13:47,840 --> 00:13:52,560 I'm going to keep going for as long as I can because I don't want her to you know I'm not going to run 125 00:13:52,560 --> 00:13:59,060 myself into the ground but yeah I yeah I'm going to keep going I will yeah. And she's going to be able to 126 00:13:59,060 --> 00:14:05,420 see how much you are doing for her and caring for her as well yeah kids notice these things even if 127 00:14:05,420 --> 00:14:13,000 they're three I hope so. So I'm going to do a memory box a big old memory box with lots of different bits 128 00:14:13,000 --> 00:14:20,580 and pieces favorite photos and I've been trying to think what would I what kind of questions have I 129 00:14:20,580 --> 00:14:24,800 asked my mum over the years when my mum's not here anymore so I have questions that I might want to ask 130 00:14:24,800 --> 00:14:32,240 her now as an adult but growing up what kinds of things would I want to know about not just about me 131 00:14:32,240 --> 00:14:42,900 but you know how I think and how I might advise or essays bits of writing photos yeah. I don't have 132 00:14:42,900 --> 00:14:47,920 biological children I've got stepchildren but I did experience a similar similar thought when I 133 00:14:47,920 --> 00:14:53,780 was diagnosed that how have I I've brought myself into their lives and I will bring the pain into 134 00:14:53,780 --> 00:14:58,420 their lives as well and I so I have experienced that to some extent probably different from no I don't 135 00:14:58,420 --> 00:15:06,060 think it's it's hard but I also do very much know that it's not my fault and I also do very much know as 136 00:15:06,060 --> 00:15:13,940 reassured by my wonderful husband that they would all much rather have me in their lives and have the 137 00:15:13,940 --> 00:15:20,200 pain and the loss and the anguish of what we're all going through together than not have as in their 138 00:15:20,200 --> 00:15:27,100 lives and I'm sure it's the same for your family so I know I know but yeah and then came hope hope did come 139 00:15:27,100 --> 00:15:32,520 we think look there are loads of different treatment options let's get cracking and see how I 140 00:15:32,520 --> 00:15:42,080 get on so I started palbocyclib which is similar it's one it's a sister drug of ribocyclib yes which 141 00:15:42,080 --> 00:15:49,700 I'm on yeah and well I think I started to panic quite early on because after three months I wasn't 142 00:15:49,700 --> 00:15:57,920 responding so I moved on to another drug capesitabine I got six months out of it wasn't 143 00:15:57,920 --> 00:16:08,920 responding well I did I had one one scan that was stable but yeah so after six months that's when I 144 00:16:08,920 --> 00:16:23,060 started looking at a clinical trial Serena won and I joined that in June of last year 2023 so how do you 145 00:16:23,060 --> 00:16:29,940 get on a clinical trial and what does it involve so I got on the trial because my team suggested it but 146 00:16:29,940 --> 00:16:35,280 I'd always said from the off that I am interested in clinical trials and that's I think that's one of 147 00:16:35,280 --> 00:16:38,600 the most because I've been asked about because I used to work in clinical trials I was a clinical 148 00:16:38,600 --> 00:16:46,300 trial manager I worked on later phase treatment trials so at that point you're kind of looking to 149 00:16:46,300 --> 00:16:51,360 see whether or not the experimental treatment is better than the standard of care so there's a 150 00:16:51,360 --> 00:16:57,900 comparison but lots of trials in that we'd be looking at as metastatic patients are earlier 151 00:16:57,900 --> 00:17:02,760 phase which means that you're going to get the drug they're not comparing at that point they're 152 00:17:02,760 --> 00:17:09,800 testing it in smaller groups of patients to have a look at the safety and any side effects but yeah 153 00:17:09,800 --> 00:17:18,200 they said that there's a trial available it's a bit of a gamble because of it being early phase they're 154 00:17:18,200 --> 00:17:23,339 testing it in one or two patients then opening up other slots so there's no guarantee as to when 155 00:17:23,339 --> 00:17:28,840 space might become available and it was at that point I said look I really want to go for it I mean 156 00:17:28,840 --> 00:17:33,760 that's adding an extra treatment line I think of them like Mario lives like if I can add an extra life 157 00:17:33,760 --> 00:17:39,220 maybe it'll keep me around that little bit longer I love that analogy I'm going to use that yeah 158 00:17:39,220 --> 00:17:49,100 anything to do with Nintendo I'm on it yeah one up yeah and I waited I said look let's let's try to 159 00:17:49,100 --> 00:17:55,540 moxifen again I'd had it before but it's been like eight years since I'd taken it I thought maybe my 160 00:17:55,540 --> 00:18:03,900 cancer's mutated enough to forget how to respond to moxifen so that covered me for six weeks and then 161 00:18:03,900 --> 00:18:08,520 they scammy quickly said yeah you've progressed so we're closer to when you might be able to get on to 162 00:18:08,520 --> 00:18:14,580 the trial and yeah I just I got through the eligibility criteria and that's one thing to 163 00:18:14,580 --> 00:18:20,960 remember it's not necessarily it's not easy getting on to a trial for a variety of reasons and 164 00:18:20,960 --> 00:18:26,000 you know up and down the country they're not distributed equally it's almost unavoidable but 165 00:18:26,000 --> 00:18:32,720 it's it is a bit of a lottery as to what might be available where you are and you know whether or not 166 00:18:32,720 --> 00:18:39,680 you're able to travel to a hospital that is running the trial um there's also you know on paper say yes 167 00:18:39,680 --> 00:18:48,120 you're you're a candidate for this trial but then it will involve you know pre investigations and 168 00:18:48,120 --> 00:18:55,960 those can throw up anything you might get a blood test result or an echo um scan result that shows 169 00:18:55,960 --> 00:19:02,920 something that makes you fall into the exclusion criteria um but yeah the gamble paid off I got on to 170 00:19:02,920 --> 00:19:11,700 the trial and I got six months out of the Serena trials on arm K which was ribocycle and the 171 00:19:11,700 --> 00:19:19,120 camivestrant so um so what so so on the trial they put they put you on a combination of drugs yeah so 172 00:19:19,120 --> 00:19:24,680 the trial drug was so the Serena there's lots of Serena trials they're testing camivestrant 173 00:19:24,680 --> 00:19:33,540 that's the name of the drug and they're doing it in combination with other drugs right so I was on arm K 174 00:19:33,540 --> 00:19:39,960 so it's got so this is I think it's similar to a MAMS trial and that it's got different arms several 175 00:19:39,960 --> 00:19:46,220 different arms testing different things so this combination they've had a ribocyclic sorry I was 176 00:19:46,220 --> 00:19:51,140 on the ribocyclic they have a ribocyclic um with camivestrant combination and then they've had a 177 00:19:51,140 --> 00:19:57,980 palbocyclic with camivestrant combination and so on so on and how did it work for you during those 178 00:19:57,980 --> 00:20:02,720 six months it was fine because I'd been on a CDK 46 inhibitor before you know that they're quite 179 00:20:02,720 --> 00:20:08,940 that's ribocyclic and palbocyclic yeah and a bemocyclic yeah one thing I will say they're 180 00:20:08,940 --> 00:20:14,780 definitely one another I'm going off on the tangent here they're not chemotherapy and I say 181 00:20:14,780 --> 00:20:21,940 that because I've been talking to people about trials um a fair bit online and it's quite common 182 00:20:21,940 --> 00:20:27,460 for a trial to stipulate that you can't have had more than two lines of chemotherapy or similar 183 00:20:27,460 --> 00:20:31,920 like one or two lines of chemotherapy in the metastatic setting and people say well I can't 184 00:20:31,920 --> 00:20:39,960 well that's me out then because I've had I've had palbocyclic and I've had um capicyte being well no 185 00:20:39,960 --> 00:20:45,100 because it's not classed that and that's something that I would advise people to really get 186 00:20:45,100 --> 00:20:51,980 to grips with the type of cancer they have and the treatment that they've had already and to ask 187 00:20:51,980 --> 00:20:56,140 questions if they're not sure just to make sure that they're not dismissing anything that might 188 00:20:56,140 --> 00:21:00,860 actually be good for them I've gone off in the tangent I do this quite often here sorry just just 189 00:21:00,860 --> 00:21:05,460 on that tangent it's a little bit of a technical thing but anyone who's on palbocyclic or 190 00:21:05,460 --> 00:21:10,620 ribocyclic the pharmacist at my hospital which is one of the best hospitals in the country for cancer 191 00:21:10,620 --> 00:21:19,380 thinks that ribocyclic is a chemotherapy drug and it is not and my oncologist says it is not but it is 192 00:21:19,380 --> 00:21:24,420 very easy for you to be confused when the medical professional is telling you the wrong thing which 193 00:21:24,420 --> 00:21:28,460 does that Google it as well it'll say it's not a traditional chemotherapy which makes it sound 194 00:21:28,460 --> 00:21:34,500 like it is yeah and it's that kind of thing that you know it upsets me and someone's oh no you might have 195 00:21:34,500 --> 00:21:39,280 been you might have been eligible had you asked the question at that point so what was the reason you 196 00:21:39,280 --> 00:21:43,820 were taken off the trial after six months stopped working so it worked but then it stopped working 197 00:21:43,820 --> 00:21:52,080 yeah so my first scan stable second scan stable third scan my um oh my tumor met started to grow and 198 00:21:52,080 --> 00:21:59,780 they're quite chunky now so um yeah again that anxiety kind of creeps in about it but I am 199 00:21:59,780 --> 00:22:07,000 remaining positive I'm now on a different combination of drugs X-mestine and Everilumus so 200 00:22:07,000 --> 00:22:13,300 I find out in a couple of weeks whether or not um they're working Vengus crust okay yeah we will be 201 00:22:13,300 --> 00:22:18,720 keeping everything crossed for you how how just going back to the clinical trial how did it feel to 202 00:22:18,720 --> 00:22:23,660 be told and actually you've had this multiple times to be told that one of those lives one of those 203 00:22:23,660 --> 00:22:30,500 mario lives wasn't working for you starts to get boring after a while you're like cut me a break I 204 00:22:30,500 --> 00:22:39,660 would quite like to feel safe for a little while um I will say though the being scanned every eight 205 00:22:39,660 --> 00:22:46,240 weeks is intense there's no real you you have your scan it's okay and then you're like right you carry 206 00:22:46,240 --> 00:22:52,260 on with your life and then you find yourself back in in the CT scanning room before you know it and 207 00:22:52,260 --> 00:22:58,960 having worked in clinical trials and then being on one did do you think that affected your 208 00:22:58,960 --> 00:23:04,240 perspective of it did you did it make you because you seem to be quite realistic in the way you talk 209 00:23:04,240 --> 00:23:10,660 about your cancer and your treatment and your life and everything did it make you did it affect your 210 00:23:10,660 --> 00:23:18,040 your experience of being on a clinical trial having known about it from the other side no it was 211 00:23:18,040 --> 00:23:25,800 weird but it didn't affect anything what it did mean is that I could have a good look at the protocol 212 00:23:25,800 --> 00:23:33,700 before when I was considering going on it I could have a good read and perhaps make sense of things 213 00:23:33,700 --> 00:23:39,940 that they're actually not complicated if you're doing all the time I'm not making out as if I'm some 214 00:23:39,940 --> 00:23:44,820 font of knowledge but you know I was able to understand what it was trying to do and have a good 215 00:23:44,820 --> 00:23:50,400 look and you know make a really informed decision but an oncologist and a trials team should be able 216 00:23:50,400 --> 00:23:56,980 to help anyone with that um no it didn't affect anything but yeah it felt strange being on the 217 00:23:56,980 --> 00:24:03,960 other end and willing myself to be eligible for a trial after being part of a team writing 218 00:24:03,960 --> 00:24:09,840 eligibility criteria and documentation it's really yeah it's bizarre how did you get into that 219 00:24:09,840 --> 00:24:14,580 in the first place and was that something you were doing prior to the first diagnosis before you 26 220 00:24:14,580 --> 00:24:20,700 yeah yeah no so I was working I fell into it it sounds on these cliches but I really did fall into it I 221 00:24:20,700 --> 00:24:26,860 started off as a trials assistant which is bottom of the rung and went my way up to data manager to 222 00:24:26,860 --> 00:24:33,560 clinical trial manager and yeah I loved it it was it was great it was really interesting I worked on the 223 00:24:33,560 --> 00:24:43,000 on a famous well cancer trial called stampede prostate cancer trial um so I would be collecting 224 00:24:43,000 --> 00:24:52,980 data on things like zoolodex and um doxy taxil which are drugs used in treatment for breast 225 00:24:52,980 --> 00:25:03,000 cancer again which is just I find very very strange um yeah um weird one changing topics slightly you 226 00:25:03,000 --> 00:25:08,180 have done some underwear modelling including after your surgery has breast cancer changed the 227 00:25:08,180 --> 00:25:16,340 way you feel about your body at the beginning absolutely oh my god when I first was told I 228 00:25:16,340 --> 00:25:23,380 couldn't have reconstruction because my second diagnosis was a lump on top of my reconstructed 229 00:25:23,380 --> 00:25:29,440 breast and well it was two lumps and annoyingly they were quite far away from each other so I needed 230 00:25:29,440 --> 00:25:36,520 this wide local excision they called it and um a massive flap of skin was removed leaving no room 231 00:25:36,520 --> 00:25:42,460 for an implant and they said we'll come back to it later if we can and when we did have that 232 00:25:42,460 --> 00:25:50,080 conversation later on um it was a no um and then when I had it again because I persisted it was it would be 233 00:25:50,080 --> 00:25:56,940 very very difficult and involve multiple operations but yeah I found losing a breast 234 00:25:56,940 --> 00:26:07,280 entirely and having to wear a prosthesis um yeah I you know I was how old was I I was 30 that's pretty 235 00:26:07,280 --> 00:26:14,060 young to I mean you've not long you know you grow up and your body changes you know when your women's 236 00:26:14,060 --> 00:26:19,420 bodies change and you kind of finally get to a place of acceptance and then cancer comes along and 237 00:26:19,420 --> 00:26:25,720 changes changes everything up again you know oh god so I went from not only that twice had the 238 00:26:25,720 --> 00:26:34,420 mastectomy got used to that and then like no that one's got to go now um yeah I found it hard I I didn't I 239 00:26:34,420 --> 00:26:42,140 didn't feel as though it's quite a normal experience for someone my age but this was through 240 00:26:42,140 --> 00:26:49,880 trying to come to a place of acceptance I got there I was like you know what my you know femininity isn't 241 00:26:49,880 --> 00:26:58,260 defined by boobs or hair it's an energy and you know there's loads of that here I don't wear the 242 00:26:58,260 --> 00:27:05,300 standard prosthetics that you get from the NHS you know I tend to wear like colorful ones and I've got a 243 00:27:05,300 --> 00:27:11,440 leopard print one that I'm very fond of just found ways of making it fun and adding a bit of my 244 00:27:11,440 --> 00:27:18,860 personality and yeah I continued to model at first I called up Mark Suspensers and I said you know what 245 00:27:18,860 --> 00:27:23,880 I don't know if I can do this anymore I've just had my breasts removed and I thought to myself what the 246 00:27:23,880 --> 00:27:30,660 hell am I doing these are bras designed for women they're pocketed to you know hold a prosthesis 247 00:27:30,660 --> 00:27:37,260 what am I doing saying that I can't do this anymore I am the target woman so I'd be doing myself and 248 00:27:37,260 --> 00:27:44,800 others like a service like running away from that and hiding myself um so yeah I carried on and yeah 249 00:27:44,800 --> 00:27:48,340 I've got to that place where I'm just like you know what it's not ideal I don't look at it and think yay 250 00:27:48,340 --> 00:27:54,340 um I don't like it but I don't actually care it's the least and it's the least of my worries nowadays um 251 00:27:54,340 --> 00:28:00,240 but I've never shown my scars but I have very much shown myself I think there's real those are really 252 00:28:00,240 --> 00:28:05,680 good words for someone else who might be in the situation of hating their body or thinking that 253 00:28:05,680 --> 00:28:11,680 they look bad and you know not like in the way they look after surgery or even not having had surgery 254 00:28:11,680 --> 00:28:17,880 is the find your personality and just do like what is what feels right for you and what feels good and 255 00:28:17,880 --> 00:28:25,420 what you like the look of and yeah yeah it's very courageous to to do the modelling and share that 256 00:28:25,420 --> 00:28:31,160 for other women because um you know do you know what I've been well I say I don't it doesn't feel 257 00:28:31,160 --> 00:28:37,480 courageous but I remember there was these images I think it might have been in it was they were in no it 258 00:28:37,480 --> 00:28:44,440 was online but it was like a newspaper website and this woman she'd had reconstruction but she just 259 00:28:44,440 --> 00:28:51,360 did this the most beautiful photo shoot and you know you do sometimes get these quite I don't know 260 00:28:51,360 --> 00:28:55,880 back in the day because we've been we were diagnosed a long time I the images I'd see were 261 00:28:55,880 --> 00:29:05,540 quite it's not sad but you know the kind of demure and you know showcasing the scar but in a kind of sad 262 00:29:05,540 --> 00:29:12,960 way this woman was owning it she was in her moment looking gorgeous and powerful and like she didn't 263 00:29:12,960 --> 00:29:19,680 care and I looked at these I thought yes look at her she's beautiful and confident and happy it 264 00:29:19,680 --> 00:29:27,300 doesn't have to be the end of any of those things and yeah so I took I I and I still you know because I say I 265 00:29:27,300 --> 00:29:35,560 don't show my scar and I think that's for several reasons But yeah, I still, when I see others 266 00:29:35,560 --> 00:29:41,180 sharing their scars and these beautiful photos, it really does, it still helps me, you know, that 267 00:29:41,180 --> 00:29:47,880 sense of solidarity and you know, because we do hide, it's weird, it's strange that we can go, well 268 00:29:47,880 --> 00:29:54,920 we wear these things and we can't tell who and who isn't in the same boat as us, so it's the only way 269 00:29:54,920 --> 00:30:01,720 really on these images. That made me think actually, like to look at you on the tube or 270 00:30:01,720 --> 00:30:05,760 wherever, no one would ever know you have secondary breast cancer. I just thought, yeah, 271 00:30:05,760 --> 00:30:09,480 I'll put my seat to someone on the way here as well. So did I, actually, yeah. I was thinking about, 272 00:30:09,480 --> 00:30:14,560 look at all you locks, sit you round here. You know what, I didn't say any of that, I was like, gave the 273 00:30:14,560 --> 00:30:18,520 guy the seat but I was like, look, you don't, yeah. It made me think, because this is something that 274 00:30:18,520 --> 00:30:23,600 has occurred to me a lot as a secondary breast cancer patient and sometimes you do need that seat 275 00:30:23,600 --> 00:30:28,640 on the tube because you're exhausted or you're in pain or whatever, but people don't know that. To 276 00:30:28,640 --> 00:30:36,440 look at you because you look young and you look, you look well as they say. How do you juggle that thing 277 00:30:36,440 --> 00:30:44,400 of not looking outwardly like a secondary breast cancer patient but inwardly feeling all that 278 00:30:44,400 --> 00:30:50,720 stuff that you feel? Do you tell people, do you introduce it or do you hide it in certain settings? 279 00:30:50,720 --> 00:30:56,880 Looking well but not being well. It's an invisible illness. It's an invisible illness. So when I was 280 00:30:56,880 --> 00:31:07,920 first diagnosed when I was young, I found it really confusing being told I looked well whilst having 281 00:31:07,920 --> 00:31:15,880 chemotherapy. I remember going to a makeup workshop actually and the lady running it said to 282 00:31:15,880 --> 00:31:21,240 me, are you one of the makeup artists? And that might sound like a lovely thing to be asked but at 283 00:31:21,240 --> 00:31:26,580 the time I was like, okay then so I shouldn't, maybe I shouldn't be here. Maybe I'm not sick. Maybe I'm 284 00:31:26,580 --> 00:31:31,980 not, maybe these things aren't for people like me but I was in the middle of chemotherapy with my boob 285 00:31:31,980 --> 00:31:39,580 completely cut off. You know, and I was having those thoughts. Well, switching topics 286 00:31:39,580 --> 00:31:44,440 slightly. Let's talk about breast cancer now's open letter to get access to the Inher2 drug on the 287 00:31:44,440 --> 00:31:50,560 NHS in England. This is a drug that is relevant for women whose cancer is referred to as her2low. 288 00:31:50,560 --> 00:31:56,940 Would you be able to explain to me what her2 is for anyone who isn't familiar? So we talk about breast 289 00:31:56,940 --> 00:32:06,840 cancer as being, we talk about estrogen, progesterone and her2. So these are things that a 290 00:32:06,840 --> 00:32:15,120 cancer can express. Lots of, if you're hormone positive, you're expressing either of the 291 00:32:15,120 --> 00:32:22,980 hormones and if you are her2 positive, your cancer is expressing her2 protein. This is a post 292 00:32:22,980 --> 00:32:28,100 recording note. Hannah means that breast cancers can contain receptors that may react to the 293 00:32:28,100 --> 00:32:33,320 hormones, estrogen and progesterone and the protein called her2. For more information on 294 00:32:33,320 --> 00:32:38,020 receptors in breast cancers, visit the breast cancer now website or go to the link in the show 295 00:32:38,020 --> 00:32:46,100 notes. Now back to Hannah. Before, if you were her2 low, you'd be class as her2 negative. You'd be 296 00:32:46,100 --> 00:32:51,740 treated the same as patients who are her2 negative. But in her2 has found a way of targeting 297 00:32:51,740 --> 00:33:00,300 cancer for people who are her2 low. So it's really exciting. It's almost like a new category. It's 298 00:33:00,300 --> 00:33:04,580 been described as game changing. So it's basically where we talk about her2. There's a 299 00:33:04,580 --> 00:33:10,560 scale and you can, if you're high on that scale, then you're, you would have her septin or her2 300 00:33:10,560 --> 00:33:14,580 treatment. But if you're very low on that scale now, there is a drug called in her2, which would 301 00:33:14,580 --> 00:33:21,360 help you. Yes. Yes. And you're in that category. Yes. A lot of us. A lot of us. Yeah. And what would 302 00:33:21,360 --> 00:33:26,220 this drug and her2 mean to you? Well, do you know what might, so going back to when I was diagnosed, 303 00:33:26,220 --> 00:33:36,110 June 2022, that is when the trial that shared the results on in her2, in her2, in her2, in her2, in 304 00:33:36,110 --> 00:33:45,000 her2 low patients was presented at ASCO, which is a big date in the clinical trials calendar. So I'd 305 00:33:45,000 --> 00:33:50,980 heard that this drug had got a standing ovation. And I said to my oncologist at the appointment 306 00:33:50,980 --> 00:33:56,960 where I was diagnosed, I said, oh, yeah, in her2, we were calling it TDXD then I was, I said, do you think 307 00:33:56,960 --> 00:34:01,720 that will become available soon? And she said, yeah, yeah, it should do, it should do. Years 308 00:34:01,720 --> 00:34:07,300 later, what is happening? It's not available still. It's been approved, I think in over 30 309 00:34:07,300 --> 00:34:14,639 countries, including Scotland. As I said, that was quite recent. But, yeah, it got a standing 310 00:34:14,639 --> 00:34:20,360 ovation because the results were that impressive. You know, it significantly improves 311 00:34:20,360 --> 00:34:28,219 outcomes. And that's both time to progression and overall survival. That's like living longer 312 00:34:28,219 --> 00:34:36,940 compared to standard chemotherapy. So it's very promising. It's really exciting, but it's less 313 00:34:36,940 --> 00:34:42,760 exciting because it's not on the table. It's not approved at the moment. Why do you think it is not 314 00:34:42,760 --> 00:34:53,880 being approved in England? I think it's not been approved yet because of money. And that's not 315 00:34:53,880 --> 00:34:59,740 saying someone's holding back. I think they're negotiating a deal at the moment. That's NHS 316 00:34:59,740 --> 00:35:06,680 England and the drug company. But I think it could possibly be deeper than that. I mean, we talk about 317 00:35:06,680 --> 00:35:13,660 NHS capacity. You know, can they afford the extra chair time and appointments? It's quite a scary 318 00:35:13,660 --> 00:35:18,120 situation when you start thinking about you really think about why it's not been approved yet. 319 00:35:18,120 --> 00:35:27,660 But when you have a drug that is this a treatment, that's this impressive in terms of its results and 320 00:35:27,660 --> 00:35:36,420 its clinical benefit, you know, it would. It would be the opposite of the advancement of cancer care 321 00:35:36,420 --> 00:35:42,420 and outcomes if we didn't approve it. So I do think it will be approved. Yeah, I just think there's a 322 00:35:42,420 --> 00:35:48,280 bit of politics and bargaining in between times. But unfortunately, during that time, there's 323 00:35:48,280 --> 00:35:57,320 people desperately waiting. And yeah, that that scares me because if my next scan. Is isn't good 324 00:35:57,320 --> 00:36:03,160 news. If in her to was on the table, that would be what I have next. But if it's not, I'd be having 325 00:36:03,160 --> 00:36:08,940 something that's been proven to be less effective. Your friend Nellie Swalla went on 326 00:36:08,940 --> 00:36:13,920 Loose Women to speak about this amazing campaign and how if you simply lived in Scotland, you could 327 00:36:13,920 --> 00:36:18,820 have access to this amazing drug. How does it make you feel that if you lived in a different postcode, 328 00:36:18,820 --> 00:36:23,020 you could potentially see this huge difference to your life in your disease regression after that 329 00:36:23,020 --> 00:36:30,200 next scan? It's not good, is it? No. But then to be fair, there is a postcode lottery in terms of 330 00:36:30,200 --> 00:36:34,820 breast cancer care for loads of different reasons. Like I know people who struggle to get 331 00:36:34,820 --> 00:36:45,420 scans on time and scan results on time. So I've been quite lucky until now. Yeah, it's not good. I think 332 00:36:45,420 --> 00:36:51,700 it's just the nature of things. But yeah, it's not fair. We all deserve the same access to drugs up and 333 00:36:51,700 --> 00:36:58,360 down the country. Yeah, I was I had people offering me rooms in Scotland. I don't know if that's 334 00:36:58,360 --> 00:37:06,360 illegal, but I will. I will do it. Well, that would certainly run through my head would be, well, I'll 335 00:37:06,360 --> 00:37:11,400 move to Scotland. Get myself up to the beat. So why not? I mean, if that was possible, I wouldn't blame 336 00:37:11,400 --> 00:37:17,360 someone for having that line of thought. I mean, it's life. Our lives are on the line. Why would you 337 00:37:17,360 --> 00:37:25,800 not think about it? It's just a shame that it would take that. Yeah. And it also is not as easy as that. 338 00:37:25,800 --> 00:37:32,060 Probably not. No, they'd be like, what are you doing here? That's not your address. In the open 339 00:37:32,060 --> 00:37:39,060 letter to NICE, which is the National Institute for Health and Care Excellence and as well as NHS 340 00:37:39,060 --> 00:37:43,660 England and the drug company, D'Aitchisankyo, which I probably haven't pronounced correctly. 341 00:37:43,660 --> 00:37:47,220 You and a group of other women with secondary breast cancer talk about how you are mums, 342 00:37:47,220 --> 00:37:52,500 daughters, friends, sisters and grandmothers. What do you hope will be the impact of showing the 343 00:37:52,500 --> 00:37:58,540 real human face of patients like you who are denied the drug in her to that they'll get a move on and sign 344 00:37:58,540 --> 00:38:06,420 a deal. We're waiting. Help us out here. Do the right thing. Do what Scotland have already done. 345 00:38:06,420 --> 00:38:12,500 That's what I hope. I hope that they do the right thing. They repeat. We are we're not just numbers. 346 00:38:12,500 --> 00:38:20,120 We are people with lives that we are so desperate to continue living. I mean, as Lila's mum, my 347 00:38:20,120 --> 00:38:27,700 daughter is called Lila. I don't want to miss any like one more kiss hug first. First anything like 348 00:38:27,700 --> 00:38:34,460 sports day. Marvel film, whatever. I don't want to miss one more of those than I need to. And if this 349 00:38:34,460 --> 00:38:41,860 drug can bring me, well, it's been, you know, has the potential to bring about extra life, then, 350 00:38:41,860 --> 00:38:48,700 yeah, I want that for me. And I want it for all the other women, too. And what what responses have 351 00:38:48,700 --> 00:38:53,840 have you had from that letter? Apparently they have they have made some phone calls between 352 00:38:53,840 --> 00:39:01,360 themselves. And that's the last I've heard of it. They've been asked for comments and stuff, but 353 00:39:01,360 --> 00:39:09,560 nothing so far. There was we did wonder if something had been put in place and just haven't 354 00:39:09,560 --> 00:39:14,680 been, you know, announced yet, because there might be an embargo in place. And that's why 355 00:39:14,680 --> 00:39:21,040 they've gone quiet. That's the hope that's being positive. So, yes, we haven't heard much since 356 00:39:21,040 --> 00:39:25,000 then, but we will keep pushing. The final decision is so important. We're going to get to come about 357 00:39:25,000 --> 00:39:33,040 in, I think, six weeks time. OK, we'll just keep everything crossed. Yeah. A few weeks after that 358 00:39:33,040 --> 00:39:39,060 conversation with Hannah, we caught up with her again via phone for some updates on the campaign. 359 00:39:39,060 --> 00:39:46,960 So, Hannah, we are meeting with you again a few weeks after we recorded that episode. Because, 360 00:39:46,960 --> 00:39:53,020 unfortunately, you did get the results from your latest scan, which weren't brilliant. And I'll 361 00:39:53,020 --> 00:39:59,860 let you fill the listeners in on that. And at the same time, the same week, we also heard that the 362 00:39:59,860 --> 00:40:08,880 Inher2Drug has been rejected in England. So could you just talk to us about, give us a bit more detail 363 00:40:08,880 --> 00:40:18,840 on both those things and the impact that that is having on you? So, yeah, I think what it is, but 364 00:40:18,840 --> 00:40:25,380 every time with a scan, I go in really hopeful and it's only been, I don't even just started it. So I 365 00:40:25,380 --> 00:40:33,620 thought, odds on, you get a little bit of time with this drug working. But no, it wasn't working. So, 366 00:40:33,620 --> 00:40:42,420 Everolimus and X-Mestane, after three months, my scan showed that my cancer was still growing 367 00:40:42,420 --> 00:40:51,940 despite taking it. And for me, it's a really quite a scary scan result because my lung met is actually 368 00:40:51,940 --> 00:41:01,120 stable, which is great. But my liver, on the other hand, is not stable. It is really starting to kick 369 00:41:01,120 --> 00:41:09,240 off there. I've now got four tumors, which are what? The last I heard, I had two and one small one. 370 00:41:09,240 --> 00:41:15,700 They're all quite sizable now. I've got four and loads of little spots showing up on the scan. So 371 00:41:15,700 --> 00:41:26,400 things feel a bit hairy at the moment. And I knew going into this scan that had things gone to pot in 372 00:41:26,400 --> 00:41:34,120 terms of the cancer growing, I would be looking at inheriting next. So to have the double whammy that 373 00:41:34,120 --> 00:41:42,400 no, inheriting isn't going to be on the table. And yes, your cancer has grown. Yeah, real sucker 374 00:41:42,400 --> 00:41:49,840 punch and I'm smiling, but I don't feel. Yeah, it's been a very difficult couple of weeks. It's been a 375 00:41:49,840 --> 00:42:00,420 whirlwind. It's been it's been lots of heartache, lots of confusion. Yeah, it isn't what I wanted. 376 00:42:00,420 --> 00:42:06,700 But this is the reality, I guess, of stage four cancer. It's completely unpredictable. I won't 377 00:42:06,700 --> 00:42:15,360 be the only person feeling this right now. But I'm just I am I am quite beyond frustrated. I'd say 378 00:42:15,360 --> 00:42:23,160 angry, but I'm too tired to be angry. Or maybe I am. I'm just really, yeah, I'm frustrated that it had 379 00:42:23,160 --> 00:42:28,480 to is off the table. And that's really niggling me because it doesn't feel right and it's not sitting 380 00:42:28,480 --> 00:42:36,040 well. Yeah. Hannah, I'm so sorry that you've had this double devastating news. I, you know, being a 381 00:42:36,040 --> 00:42:42,960 fellow stage four patient, I can. Understand that stick to the stomach feeling that you must have had 382 00:42:42,960 --> 00:42:49,000 with both of those bits of news. And it is just I don't want to swear on this podcast, but it's just I 383 00:42:49,000 --> 00:42:54,480 know it's so devastating for you. And you said that you're not the only person feeling this, but you 384 00:42:54,480 --> 00:42:59,500 are actually the only person while the main person who's become the face of a national campaign, 385 00:42:59,500 --> 00:43:06,080 which thanks to breast cancer now. Thanks to your amazing friend, Nadia Swarla. You have managed to 386 00:43:06,080 --> 00:43:13,360 speak with politicians. You have managed to go on loose women, Lorraine, various live TV shows. 387 00:43:13,360 --> 00:43:18,980 Could you just tell us what you've been doing in the last couple of weeks to try and push this and her to 388 00:43:18,980 --> 00:43:26,000 drug through and get it available for you and many, many others? So you mentioned my beautiful, 389 00:43:26,000 --> 00:43:34,020 incredible friend, Nadia there. No questions asked. No hesitation has just really, I feel 390 00:43:34,020 --> 00:43:39,960 almost like she's taken it on when in a few moments where I've not been able to because I've been 391 00:43:39,960 --> 00:43:46,020 sitting back thinking, God, processing this news and she's like, right, what can we do? My friend 392 00:43:46,020 --> 00:43:51,880 Helen with Titty Gritty has been instrumental in a lot of what's been going on as well. And we've had 393 00:43:51,880 --> 00:43:58,260 our lovely cats on board too, who I love to piece with both cats and Helen, our breast cancer 394 00:43:58,260 --> 00:44:06,960 survivors too. Yeah, we've just they've been pitching left, right and centre. I'm really very 395 00:44:06,960 --> 00:44:12,260 lucky that we've got them because I don't think some of these things would have come about. So that 396 00:44:12,260 --> 00:44:17,560 isn't lost on me. And you mentioned me being the face. I'm such an awkward face of anything like 397 00:44:17,560 --> 00:44:23,000 this reluctant face. But if it's landing, if me being vulnerable, which I'm actually not really 398 00:44:23,000 --> 00:44:30,720 that comfortable with doing and I'm glad that I'm started really sharing that side of the 399 00:44:30,720 --> 00:44:38,060 unfiltered side of stage for breast cancer and the realities, because I think it's landing. It's 400 00:44:38,060 --> 00:44:44,660 we're all human at the end of the day. And if it's pricking up the ears of people who have the power to 401 00:44:44,660 --> 00:44:50,440 make these decisions, then I will keep on going and we will keep talking to the press and we will keep 402 00:44:50,440 --> 00:44:56,360 shouting about it. And I know I'm not the only one. You know, I'm not the only one. You have the 403 00:44:56,360 --> 00:45:02,260 brilliant campaign. Those of us are involved with it. There are people sharing the petition far, far 404 00:45:02,260 --> 00:45:07,000 and wide. It's I don't know how many signatures got there. Yeah, it must be. Last time I looked, it was 405 00:45:07,000 --> 00:45:12,620 about 150,000 signatures. Yeah, this is the breast cancer now petition, which we'll put a link 406 00:45:12,620 --> 00:45:18,360 to in the show notes. Yeah. And it just shows that it is connecting with people, not just in the eye of 407 00:45:18,360 --> 00:45:24,860 the storm, but people outside of it, seeing this isn't fair. It's not right that 45 countries 408 00:45:24,860 --> 00:45:31,580 across the world have this approved as standard of care. We deserve the same quality of standard of 409 00:45:31,580 --> 00:45:40,700 care. We deserve the extra time, the hope of extra time that this drug brings about. So, yeah, we're 410 00:45:40,700 --> 00:45:51,800 just doing our part, whatever we can to to you have to keep up that pressure. And we did speak to Craig, 411 00:45:51,800 --> 00:45:57,700 Tracey and P, who is the chair of the PPG. I was mouthful for me, the all party parliamentary 412 00:45:57,700 --> 00:46:02,920 group for breast cancer, who is aware of the issue. I know he actually works with breast cancer now, a 413 00:46:02,920 --> 00:46:08,880 fair bit across these issues. And we met with the leader of the House of Commons, Penny Mordant, who 414 00:46:08,880 --> 00:46:16,520 seemed really engaged with the issue. It was brought up. So hopefully brought up in 415 00:46:16,520 --> 00:46:22,200 Parliament. Hopefully that means that, you know, we're moving forward in the right direction to 416 00:46:22,200 --> 00:46:29,780 perhaps get those parties, the parties being NHS England, nice to drug companies around the table 417 00:46:29,780 --> 00:46:38,160 and just getting a deal done because no time is of the essence. And the truth is probably too late for 418 00:46:38,160 --> 00:46:47,260 me this time round. But I'm not going to stop because it's not fair. You said that you are a 419 00:46:47,260 --> 00:46:52,240 reluctant face of this campaign. Actually, you've spoken brilliantly publicly about it and 420 00:46:52,240 --> 00:46:58,940 it's so important that you have. There's an image that I think breast cancer now are using of you and 421 00:46:58,940 --> 00:47:08,360 your little girl, Lila, which has been served to me on when I've been on social media. Which, you know, 422 00:47:08,360 --> 00:47:12,840 I understand from speaking to you on this podcast, how important it is for you to spend more time with 423 00:47:12,840 --> 00:47:18,320 your little girl. Do you you said it might be too late for you in terms of inheriting? I don't 424 00:47:18,320 --> 00:47:22,340 necessarily believe that. I still have hope that this is going to change. And this is a very fast 425 00:47:22,340 --> 00:47:29,340 moving situation at the moment. And, you know, by the time this podcast come out, it may be that more 426 00:47:29,340 --> 00:47:36,040 changes have happened. But if you're able to speak about it, is there another drug, is there another 427 00:47:36,040 --> 00:47:42,940 plan that your oncologist is talking about at the moment to help you? So if it does get approved, 428 00:47:42,940 --> 00:47:48,520 who's to say that my next line of treatment, if it fails, maybe that's when inheriting might come 429 00:47:48,520 --> 00:47:55,780 in. So there's that. It's just this time. But I don't actually have a plan. I have a conversation 430 00:47:55,780 --> 00:48:04,820 with my oncologist later today. I'm actually going in tomorrow. So I think maybe today is going 431 00:48:04,820 --> 00:48:09,960 to be the prepper, you know, giving me an idea of the putting the feelers out. And then tomorrow I 432 00:48:09,960 --> 00:48:16,360 should have something in place. And it's only been two weeks. I know it can feel like a long time, can't 433 00:48:16,360 --> 00:48:23,320 it, between treatments. But, you know, treat that that's the flush out of my current treatment would 434 00:48:23,320 --> 00:48:30,420 be anyway. I've not lost any time. I need to. This is what I tell myself so that I don't drive myself wild 435 00:48:30,420 --> 00:48:36,880 thinking I'm off treatment and it's growing. Nothing will have happened in that time or nothing 436 00:48:36,880 --> 00:48:45,760 significant. But yeah, I don't know. It could be could be looking at trials. It could be looking at 437 00:48:45,760 --> 00:48:53,540 chemo. I do more standard because there are plenty of told there are plenty of other chemo's. It's 438 00:48:53,540 --> 00:49:03,460 just for me really upsetting that we've got something that's better out there. And I can't 439 00:49:03,460 --> 00:49:13,160 have it now while I'm most well. Yeah. Yeah. I have no doubt that everyone listening to this podcast 440 00:49:13,160 --> 00:49:18,800 will want to do anything they can to help just as your friends, Nadia and your and your other 441 00:49:18,800 --> 00:49:23,400 friends have have been doing. My little girl. And I love them so much. Obviously they're like the 442 00:49:23,400 --> 00:49:30,020 aunties and big sisters I've never had. It had never had. They've been so on board and now Nadia 443 00:49:30,020 --> 00:49:34,800 has been collaborating with breast cancer now and it's just it's just been brilliant to have someone 444 00:49:34,800 --> 00:49:42,200 with that platform, you know, stand with us. And I know she'd she she'd say, shut up. Of course 445 00:49:42,200 --> 00:49:49,780 they'll do it. But no, I mean, and also just, you know, the fact that you know Nadia who is a 446 00:49:49,780 --> 00:49:54,700 celebrity who has this massive platform who is on Loose Women, which is an incredibly powerful show 447 00:49:54,700 --> 00:50:01,900 that's been going for over 20 years, you know, not every celebrity would use their celebrity and 448 00:50:01,900 --> 00:50:07,920 their platform to do something like this. So the fact that they have done this is amazing. And this 449 00:50:07,920 --> 00:50:12,600 campaign wouldn't necessarily have gone so far, wouldn't necessarily have, you wouldn't 450 00:50:12,600 --> 00:50:18,540 necessarily be able to speak to those politicians without that support. So you as the patient and the 451 00:50:18,540 --> 00:50:25,720 face representing all these other people around the around England and elsewhere, I'm sure, 452 00:50:25,720 --> 00:50:31,360 teaming up with Nadia who has the platform and then teaming up with breast cancer now, which has this 453 00:50:31,360 --> 00:50:36,520 additional platform and all the knowledge is an incredibly powerful thing. So there is a lot, a 454 00:50:36,520 --> 00:50:41,980 lot, a lot of hope in that for anyone listening who wants to help, what should be their course of 455 00:50:41,980 --> 00:50:47,060 action now? Should they be writing to their MPs, signing the breast cancer now petition? What can 456 00:50:47,060 --> 00:50:55,800 they do? Exactly those, I think writing to your MP. But I'd also say sign the petition, sign and share 457 00:50:55,800 --> 00:51:05,260 the petition so that we can show those involved how many people are really behind this and want to see 458 00:51:05,260 --> 00:51:13,260 that change made. It doesn't sound like a lot, but it really is. More signatures, the better. We will 459 00:51:13,260 --> 00:51:18,100 put the link to breast cancer now's petition in the show notes and it's incredibly quick and easy to 460 00:51:18,100 --> 00:51:23,660 sign. But in terms of writing to your MP, a lot of people won't have done that before. How do you 461 00:51:23,660 --> 00:51:35,460 write to your MP? So I, how I wrote to my MP was I went online, I found the constituents website and I 462 00:51:35,460 --> 00:51:44,760 just put subject line saying urgent breast cancer, breast cancer drug approval in her too. 463 00:51:44,760 --> 00:51:52,240 And I just laid it out and I said a drug, again, a drug described as game changing, called in her too has 464 00:51:52,240 --> 00:52:00,200 been rejected for use on the NHS. I had some links to articles and I said that I'd really love to have a 465 00:52:00,200 --> 00:52:05,860 conversation with you about this and have your support. There may well be some suggestions out 466 00:52:05,860 --> 00:52:13,680 there, Laura, about what exactly MPs can do, but they can probably be asked to approach Craig Tracy 467 00:52:13,680 --> 00:52:20,320 again, who's that chair of the breast cancer committee. I just wanted to ask you that because I 468 00:52:20,320 --> 00:52:25,320 think a lot of people, you know, haven't haven't just never written to their MP. So yeah, it's grab 469 00:52:25,320 --> 00:52:30,840 attention with that, with grab attention with the subject line. The more people who get involved in 470 00:52:30,840 --> 00:52:35,260 this campaign, which ever way they can get involved, whether it's writing to the MP, whether 471 00:52:35,260 --> 00:52:39,900 it's signing the petition or also sharing that petition and particularly if you are a person 472 00:52:39,900 --> 00:52:45,900 hearing this podcast, who has a big platform on social media, whether that's 1000 followers, 500 473 00:52:45,900 --> 00:52:53,060 followers, or you've got hundreds of thousands of followers, please share the petition, share this 474 00:52:53,060 --> 00:53:00,260 podcast episode, share Hannah's page, share Nadia's page. It all helps and it will all go 475 00:53:00,260 --> 00:53:06,640 towards that thing, which we have not given up hope for Hannah for you to get in her to and for thousands 476 00:53:06,640 --> 00:53:11,500 of other women to get in her to. Absolutely. And that's it. That's the real thing. It's not just, I 477 00:53:11,500 --> 00:53:16,520 do, it is absolutely not just for me because I probably walk away now knowing that I'm going to 478 00:53:16,520 --> 00:53:23,420 have a different treatment plan. This, I don't like injustice and I'm going to keep going because 479 00:53:23,420 --> 00:53:31,840 we all deserve the best possible treatments to be available to us and not just for us, but the people 480 00:53:31,840 --> 00:53:38,360 down the line who I will receive a heart breaking diagnosis at some point. You need to make sure that 481 00:53:38,360 --> 00:53:44,740 the best possible treatments are available for them too. Hannah, thank you so much for coming to 482 00:53:44,740 --> 00:53:50,480 meet with us again at this incredibly difficult time for you. We appreciate everything that 483 00:53:50,480 --> 00:53:56,900 you're doing and we will do everything that we can to help get in her to for all the people who need it. 484 00:53:56,900 --> 00:54:04,020 So lovely. Thank you so much for having me. Thank you. Do you feel that there is an imbalance between 485 00:54:04,020 --> 00:54:09,680 the treatment of secondary breast cancer patients and primary patients in terms of the 486 00:54:09,680 --> 00:54:13,420 drugs that are developed, the time that things take, the treatment, the attention and how 487 00:54:13,420 --> 00:54:21,520 seriously we are taken as patients? I think in terms of the drugs that are available in research, 488 00:54:21,520 --> 00:54:27,960 I think it's really difficult to separate at the point of drug development and clinical trials, 489 00:54:27,960 --> 00:54:35,500 separate what is for the good of primary patients and secondary patients. I think often in breast 490 00:54:35,500 --> 00:54:41,920 cancer trials, things will be tested on metastatic patients first. So yeah, I don't think 491 00:54:41,920 --> 00:54:49,660 it's quite clear cut that we can't say only five, 10% of whatever research or funding goes towards 492 00:54:49,660 --> 00:54:54,620 secondary cancer because it's all interlinked. There might be some instances of it being quite 493 00:54:54,620 --> 00:55:00,920 clear as to what's being focused on, but it's not as straightforward. In terms of being taken 494 00:55:00,920 --> 00:55:07,680 seriously, I think I was quite lucky. Maybe it's because I never got out of the hospital system with 495 00:55:07,680 --> 00:55:16,760 my constant diagnoses. I was taken seriously whenever I rocked up and said I've got a pain in my 496 00:55:16,760 --> 00:55:22,740 underarm and I was scanned, but I know that isn't the case for everyone. I know that some people do 497 00:55:22,740 --> 00:55:29,720 have to push further, but again, does that come down to awareness of the symptoms of secondary 498 00:55:29,720 --> 00:55:38,200 breast cancer in both the patient population and GPs? Yeah, I don't know. I don't know. I think that, 499 00:55:38,200 --> 00:55:44,760 yeah, I definitely think there is an awareness exercise that needs to be done and certainly, I 500 00:55:44,760 --> 00:55:49,800 know breast cancer now is working on that as are other charities and bodies, but in terms of 501 00:55:49,800 --> 00:55:55,680 educating both healthcare professionals and people who have had cancer of the signs and 502 00:55:55,680 --> 00:56:01,400 symptoms of secondary breast cancer because, and it's difficult because there are so many things 503 00:56:01,400 --> 00:56:07,860 that you can feel like fatigue and breathlessness or whatever that actually could be from the cancer 504 00:56:07,860 --> 00:56:12,500 treatment that you've had or from the menopause or symptoms or so many other things, but I think it's 505 00:56:12,500 --> 00:56:19,660 just really important for people who have had cancer ever to be mindful of any changes that 506 00:56:19,660 --> 00:56:23,860 happen in their body. Absolutely. Anything new that persists and can't be explained away, get it 507 00:56:23,860 --> 00:56:31,540 checked out for sure. I always say that it's good to continue to be breast and body aware even after a 508 00:56:31,540 --> 00:56:36,960 primary diagnosis. Absolutely. If people are interested to follow you or find out more about 509 00:56:36,960 --> 00:56:42,260 your campaigning and your work, where's the best place to find you? They can follow me on Instagram 510 00:56:42,260 --> 00:56:48,960 at Real House of Hannah, really, really random name, but yeah, I will admit that I'm not someone 511 00:56:48,960 --> 00:56:55,600 who posts very frequently because I am very much trying to be in the moment with my family, but yeah, 512 00:56:55,600 --> 00:56:59,840 you can check in there and I do answer DMs if there's any questions, particularly about trials and 513 00:56:59,840 --> 00:57:04,560 other things. So that's where you'll find me. That's okay. We don't have to apologize about 514 00:57:04,560 --> 00:57:09,760 being on and off sporadic social media users. I think it should be the new way. Something in it, 515 00:57:09,760 --> 00:57:15,940 right? Speaking of enjoying life, you are a diehard Spice Girls fan. Oh my God, yes. Who is your 516 00:57:15,940 --> 00:57:25,420 favorite Spice Girl? Jerry. Who's yours? Oh, sporty. I was always a sporty. I was always sporty 517 00:57:25,420 --> 00:57:30,700 too, but I always wanted to be a ginger spy. She was like the, you know, the cool one, the cheeky one, 518 00:57:30,700 --> 00:57:35,420 the goby. I was none of those things. So it's like kind of like looking up to someone wanting to be a 519 00:57:35,420 --> 00:57:40,940 bit like that, but yeah, no, I absolutely adored the Spice Girls. Yeah. The Spice Girls became 520 00:57:40,940 --> 00:57:46,540 famous for girl power, which I think is something you have in spades. Oh, thank you. So I'm going to 521 00:57:46,540 --> 00:57:51,720 reword the question that we ask at the end of this podcast to everyone. If you had the power to change 522 00:57:51,720 --> 00:57:56,280 one element of breast cancer diagnosis and treatment within the next few years, what would it 523 00:57:56,280 --> 00:58:06,420 be? Oh, that's a big one. If I had the power to change one element of it. So just one thing, can I change 524 00:58:06,420 --> 00:58:11,500 its existence? Sure. Yeah, there. Absolutely. That's what the Spice Girls would do. It doesn't 525 00:58:11,500 --> 00:58:18,680 exist. There we are. It's gone. Yeah, I think that might be the best answer we've had today. Let's go 526 00:58:18,680 --> 00:58:23,260 straight in while we're missing this around. Like let's cut the head of the snake. It no longer 527 00:58:23,260 --> 00:58:29,220 exists. We'll get a lot in her too. Just get rid of cancer. Yeah, that's a great one. Hannah, thank 528 00:58:29,220 --> 00:58:35,080 you so much for joining us on the Breast Cancer Now podcast. Thank you for having me. Thank you. If you 529 00:58:35,080 --> 00:58:40,460 would like to help with the urgent campaign to get in her to available in England for Hannah and for 530 00:58:40,460 --> 00:58:46,880 other patients around the country, please visit the link in our show notes to write to your MP, to 531 00:58:46,880 --> 00:58:52,200 sign the Breast Cancer Now petition and to share that petition far and wide. This is an urgent 532 00:58:52,200 --> 00:58:54,580 campaign and we need your help. Thank you.