Latest / Not Your Grandma’s Cancer Show / Finding your voice after a cancer diagnosis

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Finding your voice after a cancer diagnosis · Not Your Grandma’s Cancer Show

• 0:00
  From Shine Cancer Support, this is Not Your Grandma's Cancer Show.
• 0:10
  Hi, I'm Tatum Dirac and today we're diving into finding our voice. It can be hard sometimes
• 0:16
  to speak up for ourselves, to know what to ask for in medical settings, especially when
• 0:23
  we're new to them and we're overwhelmed by diagnosis, by pain, by uncertainty. So how
• 0:30
  do we find our feet in those situations? And maybe afterwards, when we've been through
• 0:36
  all of that, what do we do with it? So I've got two great guests here with me today. I've
• 0:42
  got Amelia, whose diagnosis meant that she not only had that moment of losing her advocacy,
• 0:49
  but literally also lost her voice. And Kavita, who is lovely and works in patient involvement.
• 0:59
  She is one of the people that hears and sees these stories and involves patients in actually
• 1:06
  using that experience to make things better. Let's get to it.
• 1:13
  Amelia, welcome. Hi, thank you for having me.
• 1:20
  So tell me what was going on in your life when you were first diagnosed?
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  I was just starting a new relationship, getting my life kind of back on track, feeling like
• 1:30
  I was winning in work and just rebuilding my life. We learned to just be me and not
• 1:37
  just be mum and life was pretty good. And I noticed I had like an ulcer that was pretty
• 1:44
  painful compared to your standard ulcer. I had gone to my dentist for a checkup and
• 1:50
  they dismissed it as perhaps doing my tongue in my sleeve or rubbing on my teeth. I was
• 1:56
  back and forth for a few times and he filed my teeth down, didn't think anything of it.
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  And that went on for a few months. I was still not happy and my mouth began getting
• 2:08
  increasingly sore and irritable. Chocolate was a big no-no. It would just set my mouth
• 2:14
  on fire, as would tomatoes. And if you can't eat chocolate, you know something's wrong, right?
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  Chocolate nor pizza, right? Or could you still do pizza?
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  No, tomato was just too much. And that was obviously pretty difficult. And anything sweet
• 2:31
  would irritate it. So I went to my GP's surgery and they put one look at me. That was on the
• 2:37
  Monday. They said, just on a side of caution, you know, we are going to send it as fast
• 2:43
  track, but we're not saying it's cancer, but we're going to just refer you. On Friday,
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  I had a tongue biopsy, which was awful, awful, awful, awful.
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  What's involved in a tongue biopsy?
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  They have to, like, for one, grip your tongue with like a gauze to pull it to the side to
• 3:03
  numb it. And that in itself is really uncomfortable. Somebody just pulling and stretching your
• 3:08
  tongue. Then the injection to numb it is really uncomfortable. And then they cut a piece of
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  your tongue to send it away for a biopsy.
• 3:17
  Oh, wow.
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  And how it looks after that, the bruising, the stitches, it was really painful and really
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  sensitive to hot or cold for at least a good week. But again, never in a million years
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  did I expect cancer. I just thought maybe it was an ulcer that was perhaps infected
• 3:37
  because after all, the dentist would have picked up on it and referred me if it was
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  anything bad. So maybe it's just something not too nice going on.
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  A few weeks after that, I was called into hospital. I didn't even twig when it was a
• 3:54
  room full of people. I thought it was a bit strange, but thought, OK, let's just go with
• 4:01
  it. And I was told it was cancer. And due to the size of the tumour, it probably wouldn't
• 4:09
  just be a case of a simple little removal. It would need a removal and reconstruction
• 4:15
  and neck dissection. And that was a lot to get my head around. It was just overwhelming.
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  What I can hear in there as well is that that whole process of going back, going back again,
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  and no one wants to think that an ulcer in their mouth is anything more than an ulcer, right?
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  You just think, oh, I've been chewing on the inside of my mouth in my sleep or something's
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  aggravating it. To go from that into it sounded like there was a lot of people in the room
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  and being told that news. Where was your headspace with trying to make sense of that?
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  It was all over the place. I had my middle child with me. She's almost 20 now. This was
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  obviously only a couple of years ago, so she was 18 at the time. My mind went to her because how
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  was she feeling? I just wanted to get out of there and to run away and pretend like none of
• 5:20
  it was happening. I didn't want to accept it. I'm not a smoker. I don't drink excessively. Why? I
• 5:29
  just didn't understand what it all meant moving forward. I just couldn't get my head around the
• 5:36
  enormity of it in any respect. Never mind, I was in Taunton Hospital. I live in Yeovil,
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  but they're sending me to Exeter. These are three different hospitals I've now got to work with
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  when different things are happening at different hospitals. I was in one place, consultants in
• 5:56
  another, surgery in another, and I've got to fit all of this round and rely on having an MRI scan
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  before they can book in my surgery date. Otherwise, the surgery would then be delayed. I
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  just wanted it all to go away. How you frame that, like, I just wanted to run and I just wanted it
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  all to go away, is so relatable because, yeah, that's what our nervous system does, right? It
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  wants to literally take you away from that situation and run, flee the scene. But instead
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  of being able to tend to that, what you then needed to do was think about the, and this is
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  something that I don't think gets talked enough about, is the bureaucracy of, okay, so I've got
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  to line up this scan. It's got to come by this day. If it doesn't by this, then you just said
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  with the surgery, it could mean that. So you're trying to get all of those ducks in a row while
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  your whole nervous system actually doesn't want to deal with any of it. It just wants to run. You
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  had your daughter there with you. Were you able to take in information? Was she able to take in
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  information? I think for her, she was in total shock. So I was torn between trying to comfort
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  her, trying to take in all of the information to accept it and to navigate what was ahead. I came
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  out there feeling in a bit of a blur and didn't know where I was to begin with it all. And it took
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  a while to then just sit back and go through and replay conversations in my mind and have a follow
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  up call just to check my understanding was correct. And then I knew the only way to navigate through
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  this because I think, again, having been a mum since the age of 20, I've always had to be
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  organised and on it and kind of, you know, run a tight ship to get things all lined up. And I'm
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  like that in my job. It's very fast paced at times. So I treated it like a work project in like,
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  right, this is what I need to achieve. So what are my steps to get there? And just apply that as if
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  it wasn't something that was happening to me, but a project that I needed to run in order to kind of
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  meet that deadline, a surgery day to ensure everything was aligned, because I couldn't
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  control what was going to happen. I could try to control something. So I could control chasing up
• 8:40
  appointments, getting the dates in, rather than just waiting for me to be contacted when appointments
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  were that would feel too out of control. I worked better when I could maintain some control. So I
• 8:54
  didn't wait for the call of when the scan was coming. I called them and I chased it up. Who's to
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  say that it would have happened any quicker or not if I had left it or taken any longer? I don't know.
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  But I wasn't happy to just leave it to fate. And I was worried with even the surgery that I was
• 9:15
  having, would I ever be able to speak again? I then felt so, I guess, so concerned by that. I thought I
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  need to do all of the advocating, aligning everything up as much as I can, while I can, because I don't
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  know what's on the other side. So I need to be proactive to get this surgery done at the date
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  they've given me and align everything to work with that. The sooner it's done, the sooner I'll know
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  what the other side will feel like. Even though your nervous system wanted to run, what you
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  actually did was pull in your skill set from your work, from your life, and use that to find some
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  area of control, but kind of a landing point of certainty in this massively uncertain landscape.
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  But you used what you're good at, at that moment to organize. Hats off to you, I am not as organized.
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  I think that is no small thing to do. And I think it also really goes to one of the things about
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  getting a new diagnosis and facing that uncertainty is there can be a loss of a sense of who you are
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  at that moment, when faced with uncertainty, our nervous systems behave differently,
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  our minds behave differently, our bodies sometimes from the pain or medication behaves differently.
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  But there are still skills that we have, there is still our intelligence, there's still our
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  understanding that we're bringing in from our life before we were just diagnosed. And you've really
• 11:01
  set that up. So thinking about the possibility of losing your voice, and you said wanting to
• 11:11
  advocate in advance, what did advocacy mean to you? What did it look like?
• 11:19
  It meant everything. And I think even more so now than it did then. Because back then,
• 11:27
  I was working with all of the what ifs. And now with how much I've learned since that,
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  it's become even more important, especially with all that I've had to advocate since that point,
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  and push for. I just feel it's just so important to have a voice and to be heard in life in general.
• 11:47
  But for me, it feels even more important because of times when my speech wasn't very clear,
• 11:54
  or when my voice was merely just a whisper. Yeah, having a voice now and being understood,
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  I want to use that because I might have not had this. So if I'm lucky enough to have it,
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  I want to use it for good. And that feels of so, so great importance to me.
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  I can hear that it almost gives you energy as well.
• 12:16
  Yeah, yeah, it does. It's absolutely what keeps me going. And keeps me putting up the fight
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  of this horrible, horrible disease and want to take some good from it. Because it's so
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  awful. I love destroying any bits of good I can find in it to use this whole,
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  whole horrible experience to my advantage to do some good. And to speak up. That's what drives
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  me. That is my passion. That's what's so important to me.
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  And can you tell me one time that you asked for something that you needed,
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  maybe didn't know if it was possible? And what happened when you did ask?
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  I probably can think of a few examples, if I'm honest, because as most people that knows me
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  would say, you know, I'm not one to just take no for an answer if I disagree. For good reason,
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  not to argue for the sake of argument. But I think the most important kind of example I can
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  give is the most recent one. I'm having immunotherapy treatment at the moment,
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  because the cancer's come back for a third time in just one year. And upon having my last scan
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  in February, it was then said, at my oncology appointment, a whole manner of things that I
• 13:40
  struggled to kind of even comprehend in my mind now. And one breath it was, I should maybe have
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  I considered drawing my pension early. I'm still working full time at that point. I was not ready
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  for that. And then the talk of the immunotherapy on this side of my neck, where the lumps come up,
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  it seems to be responding, but on this side, not so much. Maybe it's a different type of cancer.
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  They don't know why it's not responding. Maybe I'll need surgery to remove it,
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  they don't know right now. But they would scan me again in 12 weeks time.
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  So this comment about taking out your pension, was there any other context around that?
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  How did you interpret that?
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  I was dying. That's how I interpreted it. The immunotherapy is not working. Yes, hooray for over
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  here, but it's not working here. If you're withdrawing your pension, you really are on
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  borrowed time. And I need to consider my options. It spiraled me massively. In that moment,
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  all that self-advocacy went out the window. I had no voice. I was in tears. I was silent.
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  I didn't have the questions. I didn't know the questions. I wanted to just curl up and cry.
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  It was just awful. I left there, not knowing whether I was coming or going, whether I was
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  dying in a month, in a year. I just didn't know. And I then took some time out of work for three
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  weeks, because I just could not cope. I didn't know if I was even going to go back to work.
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  I didn't know what I was doing. I scheduled a follow-up with an oncologist, and I had a list
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  of questions, which I'm more than happy to share with you, so it will show what was going through
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  my mind at that time. And I thought, I'll get my head clear, ready to ask my questions,
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  you know. And I was very, again, like a work project and outlining my questions and what I
• 15:39
  wanted to ask. I came away not really any clearer of my prognosis in time, because I understand
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  nobody has a crystal ball. I get that. But I don't know whether I'm looking at months or years to
• 15:56
  draw my pension or not. I'm still no clearer on that, but I was expected to wait 12 weeks for my
• 16:03
  next scan. No, not happening. So with that, I took a breath, took a step back, had my time off work,
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  you know, sorted out a few life admins, including looking at all of my pensions where I've worked
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  over the years, to check where they all are and where I'm all at. And I was going to push for my
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  scan earlier than 12 weeks, because I'm not waiting until May to find out what's going on
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  over here. So I pushed for my scan to come earlier, and I had that scan. And they called me
• 16:43
  on the Friday morning, asked me to come in that evening. I moved everything I could around to
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  attend. And on the Monday, I knew they had their MDT, their multidisciplinary team meeting.
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  So I said, when I had the scan, this needs to be fast-tracked, again, self-advocacy,
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  to make sure on Monday that it's on the system ready for them to review it. Because had I not
• 17:07
  said that, I don't know if it would have been ready for review, if they would have processed
• 17:11
  it in time. So I'm going to voice that, just in case it wasn't. So I did that, and on the Monday,
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  they had their meeting. They called me. This side is kind of remaining the same,
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  but there's no cause for concern. It's not growing the tumour, but this side
• 17:28
  has shown a minimal reduction. That means that immunotherapy is working both sides.
• 17:36
  I could have been waiting still now, until next month, for that information.
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  Yeah.
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  But instead, I know that now. And that peace that it's given me, I can't even put into words.
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  And that gave me a prognosis of time and how serious I'll be talking about to draw my attention
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  now. I'd have to make up my own mind. So I thought, you know what? I've not come this far
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  to only come this far. I'm going to go back to work, continue with normality, and live my life.
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  And if, when something should change, when I have the next scan, if it's bad news at that point,
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  I will take a review and take stock and then change. But right now, I'm healthy. I am good.
• 18:25
  Yes, I've got cancer, and it's rubbish. But I am as good as I can be right now, that I'm going to
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  continue talking and living and going to work. I'm not drawing that attention. Not right now.
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  I'm not ready.
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  Yeah, I can, I can hear that. And you just, you needed that information. And I think sometimes
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  it isn't always understood. When you don't know if you're going to live or die, it is
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  the most cataclysmic impact on you. And the amount of time that you're sort of expected to wait
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  can, you know, it's, you don't even know how you're going to get through five seconds,
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  let alone months and months. And especially on the back of having a comment like that.
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  Okay, if you're going to raise my pensions, then I need the full picture now.
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  Makes so much sense. And it sounds like it was possible. It wasn't, you didn't ask for something
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  that was impossible to do, but actually gave you something that was so huge,
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  to kind of centre you and ground you. And I think that waiting for results really frames
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  your next experiences. So how long you've had to wait at the beginning, how many times you went
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  back and back and back to the doctor, then framed that moment that you were in there getting that
• 20:00
  news. When you're having to wait a really long time for a scan, and your anxiety has gone through
• 20:08
  the roof, it's then really hard to listen in that next conversation. Or when the doctors then say,
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  oh, well, this treatment, it's like, how am I supposed to take this? And I think unless someone's
• 20:20
  been in that experience, it can be really hard for them to know. Honestly, I think it's cruel
• 20:26
  and unusual punishment. If we were doing that to criminals, you know, that would be a form of
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  torture. So I love that you were able to get your scan brought forward and get that vital information
• 20:40
  for what you needed for your life. Any tips for anybody that's thinking like, I don't know if I
• 20:47
  can ask this? Ask it, what's the worst that can happen? Yeah, I mean, sometimes, you know,
• 20:54
  things don't get listened to. There's nothing worse than sitting there, worrying, wondering,
• 21:04
  if you ask, it could make all the difference and give you the information you need to make
• 21:11
  your next steps. Yeah, it reminds me, I was once in a situation where they had found an enlarged
• 21:21
  lymph. And it was in a place that would actually be really hard to biopsy. And I'd spoken on the
• 21:28
  phone to a nurse. And she had said that they had discussed it at the MDT. And it was a bit of a
• 21:35
  mystery, like what, what they were going to do about it. But it was a cause for concern. So,
• 21:41
  of course, I'm like, oh, what does this mean? So I go in, my oncologist is back from holiday.
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  He was like, yeah, you know, I've seen your scan, everything's fine. And I was like,
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  great. So can you tell me about that lymph nodes? And he was like, yeah, I mean, it's fine.
• 21:59
  And I was like, I totally feel you on that. It's like that with your emotions. Yeah. And I was
• 22:06
  like, that's, that's great. Can I understand why it wasn't considered fine? And why now it is? So
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  why at the MDT was it being considered for a biopsy? And why now? And he said to me,
• 22:20
  don't you want to be well? And I, I remember that thing, because in that moment, I thought,
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  am I losing it? Of course, I want to be well. All I wanted was the understanding of the thought
• 22:36
  process. So yes, you know, me and someone else looked at it again, and actually from this other
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  angle, bloody blah, blah, blah. But it came right back to me. And I think sometimes we don't ask
• 22:49
  the question because there is that uncertainty of what the response might be. And sometimes you have
• 22:56
  to be like, oh, I need to hold myself in this moment. And I actually went and found the nurse
• 23:01
  afterwards. And I was like, I'm not going crazy, am I? And she was like, no, no, you're not. But
• 23:09
  you know, sometimes you just need a touch point. Because when medical settings are not where you
• 23:14
  work, you're not used to them. It can it can be so intimidating. And, and I want to bring in Kavita
• 23:24
  here because thinking of that moment of intimidation, I think sometimes when you're in
• 23:29
  the system, you sort of imagine the system as a bit faceless. And I never thought to raise a
• 23:39
  complaint or an issue. Because I just imagined someone on the other side that would just and I
• 23:48
  know this sounds really over the top, but that just had no humanity. That was my imagination.
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  And then I was in a job where I was working with patient experience leads from the NHS.
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  They were like, oh, we're the we're the people that read these. And I was like,
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  oh, I would have totally come to you for a chat. You're lovely, you know, like, you're a person,
• 24:13
  you're a person. And so that's why I wanted to bring you in because Kavita is amazing. And you
• 24:20
  are a lovely person working in the system, and bringing that, you know, connection and,
• 24:29
  and listening into things. Can you tell me a little bit about the work that you do?
• 24:34
  First of all, Amelia, oh my, your story, your experiences, I slightly tried to get my hand
• 24:41
  a pen and a piece of paper to write some points down, which I wanted to just be just right to
• 24:47
  remember, because there were some points where you said around, why is it happening to me? Why,
• 24:51
  the why question comes up so often. If you've done something that's made it you're the person who's
• 24:57
  got the lottery for the cancer. And that's not the case. I think it's just one of those things
• 25:01
  that happened. And then one of it was there was too many appointments in too many places. And,
• 25:06
  and we are a community trust. And we, we have appointments in different places in different
• 25:11
  spaces. And that really resonated me listening to you thinking, actually, it's about the journey.
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  And how that's communicated. That was I wrote that note down straight away, because I wanted to
• 25:21
  talk about that bit, and around having control of your condition. So that is key. I have lived
• 25:29
  experience, not as a carer in cancer, but I have lived experience in other areas. And I'm sitting
• 25:33
  there listening to you going, yep, that happened to me. Yep, that happened to me. Oh, my God,
• 25:37
  yes, that happened to me. And it's so relatable and empowering that you used your voice,
• 25:43
  even though you know, your voice could have absolutely disappeared. But you kept fighting
• 25:48
  to the point where actually, if it does disappear, I still need to use it. And in such a positive way.
• 25:53
  So thank you. I mean, it's absolutely, can I say it was amazing to hear your story. And thank you.
• 26:00
  And thank you for sharing it. It's never easy to share a story. I get asked quite often to share
• 26:05
  mine and always brings up emotions. And you just never realise how much you're going to help. So
• 26:10
  thank you. I've gone off on a bit of a tangent. Your question around what I do.
• 26:18
  Yeah. And what got you into it? Like your experience?
• 26:21
  So my background is actually sport and sports development. And I never thought in a million
• 26:27
  years, I would be patient facing and community driven until I had my own children. And that
• 26:34
  is what got me into the system, if you like and understanding healthcare. And there's one thing
• 26:39
  I noticed that you said Amelia was around the language. And even what you said Tatum was around,
• 26:44
  do you not want to be healthy? Like there's a certain language you use. And I wanted to make
• 26:49
  sure in the work that I do in engagement and community voices, we understand the language
• 26:53
  that we use and how we interpret that language. Because we, healthcare can speak differently
• 27:01
  to the general public. We don't understand, I'm public, we don't understand some of this,
• 27:05
  the jargon that's out there and the messages. And that's something I've, and with the team that
• 27:10
  I'm in, we've fought to do. We've created our own lived experience advisory group. And we have
• 27:15
  certain focus groups and patient groups that we go to, who have volunteered to come to us. And
• 27:20
  obviously, we work with them to hear their voice and how we come across to them, and how we deliver
• 27:27
  our messages and how we make service changes. Because we can't make these changes and use
• 27:32
  these languages, because we know them, doesn't mean it fits. So for example, we have the friends
• 27:39
  and family tests, you know, that survey, that incredibly annoying survey that you get every
• 27:43
  time you have an appointment. And we took it to our league members. And we said, here, friends and
• 27:49
  family tests. And straight away, several members who are patients and or carers or both, they
• 27:55
  advocate either for themselves or their young children or for their parents, said the word test,
• 28:00
  we don't like the word test, because we're forever having tests, or it doesn't give you the right,
• 28:06
  it's not, it's not an exam, it's not, it's not. So we actually changed it to the friends and
• 28:11
  family survey based on the fact that the word test is anxiety provoking, it's not something
• 28:17
  we want to have as a community organisation. So from a single conversation that then kind of
• 28:23
  involved conversation backwards and forwards, and it is an open conversation we have,
• 28:27
  we removed it. And it is a little thing. But it makes such a big difference when you're asking
• 28:32
  for their opinions. And when you're asking for patients to come to you, you want to change it
• 28:37
  for them. Yeah, and that word conversation, like it really links into when I asked you, Amelia,
• 28:44
  about if you had any tips, it was like opening that conversation, it is a conversation. And
• 28:50
  sometimes conversations don't always go in the direction that you hoped, like mine didn't,
• 28:55
  but it ended up all okay. And sometimes we have energy for that conversation. And sometimes we
• 29:02
  might not, but it's thinking about conversations happening, whether they be in an appointment,
• 29:10
  or happening outside of an appointment, maybe later with your work, Kavita. But it's still
• 29:17
  that kind of thinking about words and conversation and connection to make a difference. And I so
• 29:29
  agree with that word test. We do not need more. Can you tell us a little bit about some other
• 29:40
  things that have have changed or altered even perceptions as a result of some of these
• 29:48
  conversations? Conversations, they are incredibly important. And I think it's not even about knowing
• 29:55
  the right people to have the right conversations. It's about having that confidence to share
• 29:59
  your experience, which is, you know, I said, it's your vulnerability in having to share something
• 30:04
  about you that isn't in a clinical space. So I'm not clinical. I don't pretend I'm clinical.
• 30:10
  I'm literally there to hear what's going on, and then try and make those influences. There was a
• 30:15
  particular member who had an experience, it wasn't directly her, but her partner. And trying to get
• 30:23
  those answers was really difficult, because the partner wasn't part of the system. It was all
• 30:28
  about the member that was trying to deal with. And she came to me, and I worked through it,
• 30:33
  and we spoke about it. And then I took it away. I then reflected on what it was that she wanted,
• 30:40
  and what the outcome could be. And then I went back to her again saying, have I understood it
• 30:44
  properly? Have I understood your story? Because if I haven't understood you, and what your ask is in
• 30:50
  your story, I can't advocate for you. I can't make those conversations happen. And then later on,
• 30:57
  obviously, I made the right conversations, I had the right conversations with the right teams,
• 31:02
  and she got a response back. And that was up to her then what she did with her response. So
• 31:07
  obviously, I listened and made sure I captured everything. But that's the hard bit is capturing,
• 31:11
  it's not my story to tell, it's someone else's story to tell. And it's around capturing that.
• 31:17
  And there's another one where we've put in a new service, we've changed our service to a
• 31:21
  particular department or a particular service we've changed. And we went and did all the necessary,
• 31:27
  not tick boxy, but all the right things that we need to do around engaging with our partners,
• 31:33
  our stakeholders, and our parents. And we put on a series of webinars, and we communicate with
• 31:38
  our patients and our carers throughout the whole process. And it's delivered, and it's been
• 31:43
  implemented since the start of the academic year. Just last week, we had a conversation with one of
• 31:47
  the mums who's been impacted by it. And to hear real feedback from what's actually been happening
• 31:54
  is key. So there's me keyboard roaring down all the notes, and I've got all of the information.
• 31:58
  And I will type that story up for her. And I will before I pass it on to that service lead saying,
• 32:04
  look, we've spoken to this parent, this is the feedback, I will sense check her story with her.
• 32:09
  I find that key because if someone's sharing my story, Amelia, you might be the same as someone
• 32:13
  sharing my story about my difficulties, I want to make sure they've captured it in my voice,
• 32:18
  not in their voice. So I think as long as I keep doing that, and as long as I allow that space to
• 32:25
  happen, I think we can make real positive changes to how we deliver care and how we advocate for
• 32:30
  care in our in our organisation. I'm still on this, this idea of conversation, because actually,
• 32:36
  you open the door, maybe it goes really well, which is great. But it doesn't stop there. Like
• 32:43
  if something's also gone well, that might be a type of feedback, it might be a continued conversation
• 32:48
  of actually, these are the things that have worked really well for me, and I think could work
• 32:55
  well for other patients as well. So what I really hear in this work is, is it's ongoing and actually
• 33:04
  thinking about it that way, maybe takes away a little bit of that every moment feeling
• 33:11
  too overwhelming. The Do I say something? Do I not? It's like, it's okay, if I don't now,
• 33:17
  I can later. I know for me, and I don't know for you, Amelia, I had really bad brain fog.
• 33:25
  And I was losing some of my words, I didn't feel smart enough to be listened to, I really lost
• 33:32
  that sense of being able to communicate. And that was something that I used to be able to do.
• 33:39
  So that confidence wasn't coming from, oh, I can do this. It was coming from I used to be
• 33:45
  able to do this, I have memories of doing this. And I'm wondering for you, in that time,
• 33:51
  when you didn't have a voice at all, where did you think about going forward? Where did your
• 33:58
  confidence come from? That is a really good question. Because there were days where my
• 34:07
  confidence was zero. My voice, not great, was not feeling it. And I would just hide away. And
• 34:16
  I would make it tomorrow's problem. And I just couldn't. But there was always then be something
• 34:25
  inside me when I look at my children, when I would think of who I was inside the life that I wanted.
• 34:34
  And I didn't want cancer to win. And if I didn't have a voice, that means I'm letting cancer win.
• 34:40
  So that would invigorate that confidence to kind of come out much like the phoenix and just
• 34:50
  use my voice. However, the words would come out, sometimes they wouldn't come out quite right.
• 34:55
  It would take a minute to get the words all together. But I would stand my ground and I would
• 35:03
  ask. And I think what's really helped me is in the beginning, when I got this diagnosis,
• 35:09
  I knew I had two options. I could be open about it, or be quiet. And I chose from the beginning
• 35:16
  to share my journey openly on social media. And that I did to just put it out there as an awareness,
• 35:26
  because I've never heard of tongue cancer. How many other people work the same? And
• 35:32
  that has got me used to kind of speaking openly and honestly. And in doing so, that kept that
• 35:40
  memento going. So even if it comes to needing to ask questions, needing to navigate around things,
• 35:47
  to just not give up, because if all of these people have been following my story,
• 35:54
  and I just fall off and not provide an update or not continue fighting, what example
• 36:01
  am I setting for other people, for my children?
• 36:05
  Kavita, you can really relate to this, can't you?
• 36:10
  So I'd love to bring you into the conversation to respond to Amelia here.
• 36:16
  Well, straight away, Amelia, when I come off this, I'll be on my phone searching for you.
• 36:20
  Similarly, I struggled really, really badly with postnatal depression after I had my son,
• 36:25
  and there was no support. An Asian woman having mental health issues, it's not common
• 36:30
  at all that anyone would speak about it. So I also shared my journey and used my voice to help
• 36:37
  others. And it's not until you're out of the thick of it that you realise just you can help one
• 36:43
  person. And with the support of friends and family around me, I've created a community that
• 36:50
  helps mums and their partners and their families who struggle also with mental health, just to give
• 36:54
  them an opportunity to get out and about, whether it's a walk or an activity in the woods, we
• 36:58
  fundraise, we do lots of things. But listening to your story, it's amazing how many people
• 37:04
  do share their stories and then how many people don't. So like you said, you could have gone one
• 37:08
  or the other. And where I mentioned at the beginning, like I've got experience of caring
• 37:13
  with cancer diagnosis with my mum. And she did the opposite to you. She completely withdrew and
• 37:21
  went within herself. And even now, with several years down the line, she still has that in her
• 37:26
  head that it's like a weakness. And I completely understand that. And it's really hard. So me
• 37:31
  moving and using my experiences of my own and shifting it completely, like I'm constantly
• 37:37
  advocating for other people. And it does come across to yourself. That's one thing I would
• 37:42
  share is protect yourself as well and your own well-being. But the sense of pride you can have
• 37:48
  in helping someone else and that and the fact that they may struggle. Yeah, it's really nice
• 37:55
  to support and use your voice for them. And that's what we try and do all the time when we make
• 38:00
  really good changes in the organisation. I didn't even know there were people like you that
• 38:05
  existed out there that patients can speak to that can make a difference. And in learning that,
• 38:14
  I'm like, wow, I want to speak to these people because I have a lot to say. And if me sharing
• 38:21
  my experiences can make a difference, I want to do all that I can because I am absolutely serious
• 38:28
  about taking any bit of good from this horrible cancer that I can. So whether it's speaking to
• 38:35
  you or somebody like you within my area, whether it's me getting involved, whatever I can do,
• 38:41
  I feel so passionately about wanting to do that to make any difference.
• 38:47
  What a lot of people do is they think they can only come to us with a complaint. And as much as
• 38:52
  we are here for it, because that's where we receive most of our learning is from things that don't
• 38:57
  quite go right. But there's also a lot that can be done with things that go well. Yeah. And how you
• 39:02
  can do good. We want more of those stories. And that is what our lived experience advisory group,
• 39:07
  they bring the good and bad. They bring a mix of both, but their positive feedback can change.
• 39:13
  Their own experiences really do shape. So I welcome a conversation with you, Amelia, or I
• 39:19
  can definitely try and support you in wherever it is you're based to find out where we can capture
• 39:24
  them and how we can capture them. And I know Shine can definitely do that too. But yeah, we can all
• 39:30
  band in together to help you. You know, you're not alone. That's one thing I've learned is you're
• 39:34
  never alone and you just don't know what is there to support you and how you can get that.
• 39:39
  That is it. That is it. You're right. It's understanding what support there is out there,
• 39:44
  because for me, in like even discovering Shine and all the support it has to offer,
• 39:50
  that has made a difference. Same with like the young tongues, you know,
• 39:54
  finding them and the support that has. And sometimes you don't always get that communication.
• 39:59
  Okay. Yeah. You've got Macmillan, but that's so big. You don't know where to begin.
• 40:05
  So you're just like, it's too overwhelming. You know, if I've only got so much capacity for what
• 40:10
  I can do, that's where I have to give my energy. But in now knowing from you and these other kind
• 40:16
  of options that are out there, absolutely, I'd be more than happy to kind of to have that
• 40:21
  discussion, you know, offline and kind of see where we can go from there.
• 40:25
  Oh, that would be wonderful. And the word you just said it yourself,
• 40:28
  overwhelming, and you know, your mum living through it, and still working full time. There's
• 40:34
  probably many of us who are doing that. And overwhelm is, is something I come across all
• 40:39
  the time. There's too much information. And we laughed at Robbie at the beginning when you had
• 40:45
  to log off and log on again. But Google is something like search engines, AI, it's playing
• 40:51
  such a role. And I think we need to streamline a little bit of support. And that's what we're
• 40:56
  trying to do. We're trying to streamline support. And we're trying to work with our patients to make
• 41:00
  sure we don't add to the extra burden of what they're going through or the extra diagnosis or
• 41:06
  the extra appointments and making sure everything's streamlined just just to support them in their
• 41:10
  journey. That really does make a difference. Absolutely. Sometimes it's knowing that Acovita
• 41:17
  exists, and then tracking them down in your trust. You know, absolutely. And knowing that there are
• 41:24
  people that are wanting to make changes, that there is moments of possibility that is an evolving
• 41:31
  conversation. And I think sometimes, when you've been in the cancer world for a really long time,
• 41:39
  you end up getting this grizzled wisdom. But actually, it'd be really lovely to get that to
• 41:47
  people sooner, you know, that you don't have to be in the trenches. There was someone that I was
• 41:53
  talking to who needed a colonoscopy. And this is many years after their diagnosis. And she said,
• 42:01
  Oh, I'm going to need general sedation. And they said, No, we don't do that. And it's just a point
• 42:08
  to remember that actually, you know, you are the expert on you and your body because no one else
• 42:13
  is going to read your notes, you know, the way you know, what's happened. And she said, Well,
• 42:19
  the last time I had a colonoscopy, it was actually so painful, they had to put me under general
• 42:24
  sedation. And the reason for that is that the radiotherapy that I had for my cancer has scarred
• 42:30
  that area. So it isn't just a straightforward. So that advocacy can come, you know, many years after
• 42:39
  a diagnosis, as well as when you're in the acute beginning stages of it. And knowing what you can
• 42:47
  ask for, and finding out from other people, you know, what have you asked for? Oh, you asked for
• 42:53
  a scan sooner? Okay, maybe I can ask. And thinking of that, oh, what what could I do to send in
• 43:02
  something or participate or find a Kavita to chat to?
• 43:08
  Even with knowing how big and busy the NHS is, you know, things can slip through the net.
• 43:16
  Things can, you know, be a higher priority, and you just don't know where you sit on that.
• 43:22
  So just by you making that call and following up and asking the question of the art of the possible,
• 43:29
  that can help support, you know, all of that kind of extra work and going through the lists,
• 43:37
  and get you your answer. Even if your, you know, appointment is sometime down the line,
• 43:41
  you might not be getting a letter for a few weeks, but you can find out today
• 43:45
  when that appointment is. So even something like that, just in your mind to know,
• 43:50
  when's that next milestone happening, can make a difference.
• 43:54
  And I think knowing that, and voicing it, and wanting to share that, like how important that
• 44:01
  is for you, then helps so many other people coming after that maybe English isn't their
• 44:07
  first language. Maybe communication has always been, you know, kind of a tricky point,
• 44:14
  and the brain fog is even foggier. So actually, you know, these things that are changing,
• 44:20
  and Kavita, you said like, with AI and the possibilities, and the fact that we actually
• 44:26
  do have some of our tests and some of our appointments, it'd be lovely if all of them
• 44:31
  were on the Patients Know Best app, or some of those, where you can see your own blood results,
• 44:38
  you can read your own test results, that for some people, that is going to be, that's going to give
• 44:43
  you that sense of, okay, this is what's coming, I know what's next. Thank you, both of you.
• 44:50
  Kavita, I can see you've got something that you wanted to say there.
• 44:55
  I wanted to say, when you've mentioned Patient Knows Best, and the apps that give you results,
• 45:00
  it's about giving you the empowerment to be able to advocate for yourself. And that feeling,
• 45:07
  as me, as a patient myself, with various complications that I have, and then obviously,
• 45:11
  listening to you, Amelia, and then caring, and having small children that you've got advocate
• 45:15
  for them every single day. It's that sense of, I can do it. And you said it right at the beginning,
• 45:21
  I matter. And I think if we hold on to the fact that you, we matter, I matter, and you're going
• 45:27
  to fight for yourself. And it shouldn't have to be a big fight. It should just be a fight
• 45:30
  enough for you to be heard, and for you to be able to make changes. We're all learning. I think
• 45:36
  everything we do in any organisation, in any trust, or whatever it may be, from doctor surgeries to
• 45:44
  anything, we are constantly learning. And that is something that we are always, we're always doing.
• 45:49
  So keep sharing. I think that's the key message here is keep sharing, and keep making that
• 45:54
  difference. And I think that is, you didn't ask me for my closing notes. But I know, I love that.
• 46:02
  Yeah. And it can be a bit of a chicken and an egg, can't it? You might not feel confident,
• 46:08
  but actually, if you then are heard, that builds the confidence for the next time.
• 46:13
  You know, you aren't confident, and you ask, and maybe you're not heard, but then you're like,
• 46:19
  you know what, I think maybe I could ask that a different way. Maybe I will ask why that isn't a
• 46:25
  possibility. And actually, then you learn something for the next time that can then build that
• 46:31
  confidence. So, you know, again, it's a process, not like a one stagnant moment where you've spoken
• 46:41
  up. Yeah, fluid, that is the great word. It is kind of yeah, a speaking. And I am so glad,
• 46:50
  Amelia, that you have your voice back, and we're able to hear it. And thank you so much, Kavita,
• 47:00
  for joining us and being so lovely and doing the work that you do. And if you're listening to this,
• 47:07
  and you're thinking, actually, I'd like to share my voice or my experiences, contact us at Shine.
• 47:14
  We have lots of different ways to do that, including being on the podcast. So if you have
• 47:22
  ideas, if you'd like to be a guest, just get in contact, head over to the Shine website,
• 47:28
  shinecancersupport.org. Amelia, what is your Instagram?
• 47:33
  It's ameliasweld, but you've got the E's as 3's and the O's as 0's, just to make it more complicated.
• 47:42
  Lovely. And Kavita, do you have anything you'd like to share?
• 47:46
  You know, the work we're doing at Bromley Healthcare is about patients first. And I want
• 47:51
  to make sure we are always advocating for our patients. So if anyone wants to ever get involved
• 47:55
  or have a conversation, I am the engagement manager at the organisation. So just you can find
• 48:01
  I'm sure you will share them. But I would welcome a conversation. And I love listening to stories
• 48:05
  and journeys and, and being able to use those to make positive changes. Thank you so much.
• 48:10
  And thank you for inviting me. It's been a lovely experience.
• 48:12
  Oh, it's been really great. Thank you so much to both of you. Until next time.
• 48:18
  Bye.