Latest / Not Your Grandma’s Cancer Show / Live at Shine Connect: Finding Direction After Cancer

Transcript

Live at Shine Connect: Finding Direction After Cancer · Not Your Grandma’s Cancer Show

0:01
Speaker0: Hi, I'm Tatum De Roeck, and this is Not
0:05
Speaker0: Your Grandma's Cancer Show. From Shine
0:09
Speaker0: Cancer Support, this is Not Your Grandma's Cancer
0:13
Speaker0: Show. This is Not Your Grandma's Cancer Show.
0:17
Speaker0: We are here live at Shine Connect.
0:21
Speaker0: I'm so looking forward to it. Um, let's hear it
0:24
Speaker0: for this amazing audience and amazing guests.
0:29
Speaker0: Today's topic is finding
0:32
Speaker0: direction. And the reason that direction is sometimes
0:36
Speaker0: really hard to find is that many of us will feel a state
0:40
Speaker0: of limbo. There was a diagnosis limbo,
0:44
Speaker0: there was a recovery limbo, there was a systemic bureaucratic
0:49
Speaker0: limbo, there's identity limbo and mental
0:52
Speaker0: health limbo. Have any of you felt that kind of
0:56
Speaker0: limbo before?
0:57
Speaker1: Yeah.
0:57
Speaker0: Yeah. All right, so we're thinking about
1:01
Speaker0: how do we find direction when things are tough? tough, and that's what our
1:05
Speaker0: panelists are going to chat about today. So let's get to it.
1:12
Speaker2: Not your grandma's cancer show.
1:13
Speaker0: So we're gonna go down
1:15
Speaker0: the line. If you would like to introduce yourselves and
1:19
Speaker0: what is your most used emoji.
1:23
Speaker3: Hi, I'm Lana, and I think my most
1:27
Speaker3: used emoji is the one with a little kiss. on the side,
1:31
Speaker3: kind of very cheeky.
1:34
Speaker0: I'm really happy I'm sitting beside
1:36
Speaker0: you. I get the side kisses.
1:39
Speaker1: Well, my name is
1:39
Speaker1: Jan. My emoji would be like the smiling,
1:43
Speaker1: laughing with tears coming out, mostly because it's
1:47
Speaker1: the first easiest one to find and I just don't understand the others.
1:51
Speaker0: Excellent.
1:53
Speaker4: Hi, my name is Adam. My most
1:55
Speaker4: used emoji would be The one with the tongue sticking
1:59
Speaker4: out. We use it a lot in the family group chat to kind of
2:03
Speaker4: like take the mick out of each other. So that's probably my most used emoji.
2:06
Speaker5: Hi, I'm Beth, and my most used emoji would probably be
2:10
Speaker5: the heart emoji.
2:12
Speaker0: Solid choice.
2:14
Speaker5: Which colour?
2:15
Speaker5: Oh, if it's anything to do with Shine, orange, obviously. But mainly
2:19
Speaker5: red.
2:20
Speaker2: Yeah. Hi, I'm Matt. Probably most used
2:23
Speaker2: emoji is smiling, but it's this kind of skewed to the slight angle,
2:26
Speaker2: kind of like that kind of thing.
2:27
Speaker1: So that's probably me.
2:29
Speaker0: I love that you pictured it at the
2:33
Speaker0: same time. Excellent. And could
2:37
Speaker0: you also share, like, how old you were when you got your diagnosis
2:41
Speaker0: and kind of where you are now with things,
2:45
Speaker0: Lana?
2:45
Speaker3: So I was first diagnosed when I was 20.
2:49
Speaker3: I'm 31 now, so it was quite a long time ago,
2:52
Speaker3: and I was just on my Last year of uni,
2:57
Speaker3: missing most of the studies, but somehow I managed to
3:01
Speaker3: get my diploma. And then I got a
3:05
Speaker3: recurrence at 28, and then another one,
3:10
Speaker3: and I was told that now it's a chronic condition. So I
3:14
Speaker3: kind of had to go through quite a lot of adjustments.
3:18
Speaker4: Yeah.
3:19
Speaker0: Jan?
3:20
Speaker1: Well, in total transparency, I'm a
3:22
Speaker1: plus one. So cancer, not yet.
3:27
Speaker1: And that would have been 3 years ago.
3:30
Speaker0: Yeah.
3:30
Speaker0: And how old was your partner?
3:32
Speaker1: So 36.
3:33
Speaker0: Yeah. And how long have you guys been together?
3:36
Speaker1: Oh, 15 years
3:37
Speaker1: now.
3:37
Speaker0: Yeah. Okay, thank you.
3:40
Speaker0: Adam?
3:41
Speaker4: I was diagnosed in May 2025
3:44
Speaker4: with Ewing sarcoma when I was 21. I'm now
3:48
Speaker4: 23. I finished treatment in January 2026,
3:51
Speaker4: this year.
3:57
Speaker5: Yeah, I was diagnosed with breast cancer in April 2023.
4:01
Speaker5: I was 30 at the time, I turned 30 in January, and then,
4:06
Speaker5: yeah, I've been now cancer-free since December
4:10
Speaker5: 2023, so 2 and a half years now.
4:16
Speaker2: So for me, September 2020, I was
4:19
Speaker2: 39 in those days.
4:23
Speaker2: And yeah, so that was, yeah, stage 4 bowel cancer.
4:27
Speaker2: So for me, that was when things started.
4:29
Speaker0: Yeah,
4:30
Speaker0: thank you. Um, and one of the lovely things about having
4:34
Speaker0: an audience here is you get to be a part of this. So,
4:37
Speaker0: you know, you agree with something, let us hear it.
4:40
Speaker0: We'll take a heckle. Lana, when, when I raised this
4:44
Speaker0: topic of finding direction, how did you
4:48
Speaker0: interpret that?
4:49
Speaker3: My mind first went into careers
4:53
Speaker3: and building your life, and at first,
4:58
Speaker3: after my first diagnosis, I tried to
5:01
Speaker3: think, okay, I'm past this, I've done my treatment, so I will just run
5:06
Speaker3: forward. And I tried to get
5:09
Speaker3: jobs, continue with studies,
5:13
Speaker3: just find myself. But then after my recurrence
5:17
Speaker3: and the second recurrence, I just realized that I am a
5:21
Speaker3: mess. I do not know what I want
5:25
Speaker3: to do, what I can do, because treatments brought
5:29
Speaker3: a lot of physical changes that just
5:33
Speaker3: don't allow me to be normal and
5:37
Speaker3: work full-time.
5:41
Speaker3: And obviously the mental part, the strain that we
5:45
Speaker3: all face after a cancer diagnosis.
5:49
Speaker3: So currently I am in a total
5:53
Speaker3: limbo, thinking what I want to
5:56
Speaker3: do in life, how am I going to build a career, how I'm going to
6:00
Speaker3: earn money. But at
6:03
Speaker3: the same time, what really surprised me is that
6:08
Speaker3: the inward direction was
6:12
Speaker3: very interesting because I
6:15
Speaker3: can't say I'm thankful for cancer. I don't want to sound
6:19
Speaker3: that corny, but definitely if it
6:24
Speaker3: hadn't been for cancer, I wouldn't be so true to myself today.
6:29
Speaker3: I know what my values are.
6:32
Speaker3: I stripped away from all the noise and all
6:36
Speaker3: the shoulds and musts and someone else's script.
6:40
Speaker3: And I think I'm finally starting to write
6:43
Speaker3: my own story, which is incredible.
6:50
Speaker0: I love that. Um, a friend of mine had an expression,
6:54
Speaker0: um, stop shoulding on yourself. And I think it's actually really
6:58
Speaker0: hard to not should on ourselves, right? Like, I think a lot of
7:02
Speaker0: us have that in our heads, like, oh, I should be at this point,
7:05
Speaker0: I should be doing this. And, and actually getting
7:08
Speaker0: rid of that and being able to hear yourself think—
7:13
Speaker0: what is one of the surprising things that have come up for
7:16
Speaker0: you? Like, is it— have you surprised yourself?
7:20
Speaker3: I think understanding that my main
7:24
Speaker3: value is people and spending quality time with
7:28
Speaker3: the loved ones. That's why I'm so chuffed that I found
7:32
Speaker3: Shine. I always say you are my tribe, because every time I come up
7:36
Speaker3: for a meetup or camp or connect, it's like,
7:39
Speaker3: oh, I've seen you twice before, but I love you
7:43
Speaker3: and you're my family.
7:46
Speaker0: You know, I know for me it usually takes me 2 glasses of
7:50
Speaker0: wine and then I love everyone, but at Shine I can do it
7:54
Speaker0: sober. I mean, it's, it is a really lovely place
7:58
Speaker0: that you can, and I think if there's something about what you
8:02
Speaker0: were saying about being yourself, like not having to like
8:05
Speaker0: pick different parts of your personality and put this
8:09
Speaker0: forward. You can just come as you are. Um, and speaking
8:14
Speaker0: of loved ones, um, you have a
8:18
Speaker0: loved one within Shine, don't you?
8:19
Speaker5: I do, I do.
8:20
Speaker0: Would you like to share?
8:21
Speaker3: So I found my current partner, lovely Will, who's standing
8:26
Speaker3: and smiling there, uh, through Shine.
8:30
Speaker3: There was no abuse of power All consensual.
8:34
Speaker3: But it has been quite interesting to
8:38
Speaker3: experience cancer as a plus one.
8:42
Speaker3: I'm sure we'll hear more from Jan.
8:46
Speaker3: But it also comes with the challenges where on the one hand it's
8:50
Speaker3: incredible that we have this understanding and
8:54
Speaker3: care for each other and support. We don't have to explain
8:58
Speaker3: ourselves if we want to cancel or reschedule
9:02
Speaker3: or change plans because we are fatigued or in pain.
9:05
Speaker3: But on the other hand, it is plus one
9:10
Speaker3: uncertainty, which we had enough. But now it's even
9:14
Speaker3: more thinking, OK, how can we build
9:19
Speaker3: our lives? No one's going to give us mortgage.
9:23
Speaker3: It's hard to get insurance, as Kynwen mentioned
9:26
Speaker3: before. So there is a lot of uncertainty,
9:29
Speaker3: but also a lot of empathy and understanding,
9:33
Speaker3: which is very important and very helpful.
9:36
Speaker0: And I imagine, you know, kind of thinking about direction, like you've
9:40
Speaker0: kind of talked about that internal direction,
9:44
Speaker0: so finding more about yourself, but then finding
9:49
Speaker0: your way in a relationship is another form of a direction.
9:54
Speaker0: How long have you been together for now?
9:56
Speaker3: A year and a
9:57
Speaker3: half, a bit more.
9:59
Speaker0: That definitely deserves a woo!
10:00
Speaker5: Going strong.
10:04
Speaker0: Yeah, and how was that
10:07
Speaker0: choice to do that? Like, was it kind of, yep, given, or did it feel
10:11
Speaker0: like, oh, I'm making kind of a different directional
10:15
Speaker0: choice to invite someone else into my life at this
10:19
Speaker0: point?
10:20
Speaker3: It definitely didn't feel like a choice. It just
10:23
Speaker3: happened. And it also was a really nice feeling
10:28
Speaker3: to get the butterflies and everything, because after
10:32
Speaker3: my first diagnosis and after my previous relationship broke
10:36
Speaker3: down, I was incredibly depressed at the grey age
10:40
Speaker3: of 26, thinking that I'm never gonna love again,
10:44
Speaker3: it's over, I can't give my heart again to people.
10:48
Speaker3: So kind of feeling, oh, I actually can.
10:52
Speaker3: It was really nice.
10:53
Speaker0: Yeah, and I think a lot of us write ourselves
10:55
Speaker0: off, like, who would want— yeah, I know that was something that
10:59
Speaker0: I definitely felt was, who would want me now? And And
11:04
Speaker0: it took me a long time to build back up
11:08
Speaker0: that confidence. Thank you for sharing
11:11
Speaker0: that. And Jan, you have experience
11:15
Speaker0: of being in a relationship with someone who is diagnosed.
11:19
Speaker0: Can you tell me how that has been for you
11:22
Speaker0: in terms of how it's impacted your sense
11:27
Speaker0: of finding direction?
11:28
Speaker1: Well, first, when you mentioned direction
11:31
Speaker1: is what we're going to be talking about, I really was like, blank face.
11:36
Speaker1: No idea what we're talking about here.
11:37
Speaker0: Mm-hmm.
11:38
Speaker1: But I think
11:39
Speaker1: I took the word and just reflecting on it on the last week has
11:44
Speaker1: been like quite interesting because I never really took the time to
11:49
Speaker1: try and put it in it. I feel that we
11:53
Speaker1: were on a fantastic trajectory before that has been going and
11:57
Speaker1: ever since we met, we met in South Africa, We went to Malaysia,
12:02
Speaker1: we went to New Zealand, always one following the
12:06
Speaker1: other. It felt like we were building together,
12:10
Speaker1: following each other. And we had just,
12:13
Speaker1: at the time of 9 months before diagnosis,
12:17
Speaker1: our daughter was born. So the
12:21
Speaker1: house was purchased when— until
12:25
Speaker1: October of that year. I was on top
12:29
Speaker1: of the world. I had launched a new business,
12:32
Speaker1: got out of my previous career in digital marketing and decided to switch
12:36
Speaker1: into executive coaching. And finally, everything was really working
12:41
Speaker1: really well. And the time
12:45
Speaker1: of diagnosis was like definitely a pivot change
12:50
Speaker1: time. But I didn't acknowledge that until
12:53
Speaker1: you asked me the question.
12:54
Speaker4: Yeah.
12:55
Speaker1: It just felt like Okay,
12:57
Speaker1: we just keep going. And this really reminded
13:00
Speaker1: me that if I had any statements in my life
13:05
Speaker1: that I was following to the T, it was, the world is generous,
13:10
Speaker1: keep going, keep trusting, keep having faith,
13:14
Speaker1: whatever has to happen, happen. If there's a wall, just push through,
13:18
Speaker1: things will work out. I was never really paying attention
13:22
Speaker1: to, well, if there's a wall or not, if I'm slowed
13:26
Speaker1: down or not. I just kept going and kept going
13:29
Speaker1: and figuring things out and building things or giving up
13:33
Speaker1: on things. And so my life until that
13:37
Speaker1: moment was just keep going forward. I never really considered that we
13:41
Speaker1: could choose a direction or that the direction could have to be
13:45
Speaker1: changed. It was always keep going. Pushed through.
13:49
Speaker1: And you asked me that question, I'm like, oh, perhaps some people choose.
13:54
Speaker1: And certainly I've had to adjust to
13:58
Speaker1: a certain point. And I think that moment
14:03
Speaker1: of the diagnosis made me realize that I didn't
14:07
Speaker1: really know how to really look inward and
14:11
Speaker1: to readjust a plan.
14:14
Speaker1: to circumstances in life.
14:17
Speaker0: Oh,
14:17
Speaker0: there's so many things that you, you raised in there, because I think so many
14:21
Speaker0: of us— and I think this is the thing about getting diagnosed
14:25
Speaker0: in these decades of our lives, 20s, 30s, and 40s—
14:29
Speaker0: is that we are kind of on a trajectory. There is a sense
14:32
Speaker0: of momentum, and we often apply that when
14:37
Speaker0: we get the diagnosis, and then things aren't quite
14:41
Speaker0: working, and then it can just feel— you can feel so
14:45
Speaker0: lost. And often we're on that treadmill,
14:49
Speaker0: so when do we ever have the time just to sit and kind of reflect
14:52
Speaker0: on that? We often feel the feelings of it, of like,
14:56
Speaker0: oh, why?
14:56
Speaker5: Why?
14:57
Speaker0: You know, like you're up against something,
14:59
Speaker0: but it's quite hard to articulate why that's so
15:03
Speaker0: tough. And it's one of the things with Shine, like with the programmes and
15:07
Speaker0: other things is like having a little bit of space to have a think.
15:11
Speaker0: And we do have programs for plus ones as well because, you know,
15:14
Speaker0: we acknowledge that it isn't just our life
15:18
Speaker0: that's affected, it's our partner's life. And maybe
15:22
Speaker0: I should have paid more attention to my partner when I was diagnosed
15:27
Speaker0: because of that. I was a little hard on her.
15:30
Speaker0: But yeah, really, really appreciate that kind of
15:34
Speaker0: thinking about what, what that meant to you.
15:38
Speaker0: And Adam, you've also like were
15:41
Speaker0: on a trajectory, weren't you? What were you up to
15:46
Speaker0: in your life? What was like your main focus in life when you were diagnosed?
15:49
Speaker4: So up until the age of 19, I played football
15:52
Speaker4: semi-professionally, and then when I stopped playing football, I got
15:57
Speaker4: into long-distance running for about 2 years. by the time I was 21.
16:01
Speaker4: So I'd always been like very active, very fit, very healthy,
16:04
Speaker4: very kind of focused on, you know, my health. And I think
16:08
Speaker4: that's why when I got diagnosed, it was a bit of a kind
16:12
Speaker4: of shock to the system because I didn't really have any side effects. It kind
16:15
Speaker4: of just came out of nowhere. And I had like a lot of confusion
16:19
Speaker4: around my diagnosis because I had this kind of perception
16:23
Speaker4: in my head that like only unhealthy people get diagnosed with cancer.
16:26
Speaker5: Mm-hmm.
16:27
Speaker4: And, you know, all the things I was doing was to mitigate something like this
16:30
Speaker4: happening. So when it happened, it kind of put me in
16:34
Speaker4: a situation where, you know, have I done something wrong? And I would have like
16:38
Speaker4: many conversations with doctors over and over again,
16:41
Speaker4: kind of asking them, you know, are you sure there's nothing I've done wrong?
16:44
Speaker4: And, you know, no matter how many times they would tell me, I would always
16:47
Speaker4: attribute some of the blame to myself. To almost kind of,
16:51
Speaker4: you know, if I've created problem, then I can kind of create a solution to
16:55
Speaker4: the problem. But when you're in a situation where you've neither created the problem
16:59
Speaker4: or the solution and you have no control over the solution, you're kind of in
17:04
Speaker4: a bit of a limbo. And obviously, I had Ewing sarcoma in my distal tibia,
17:07
Speaker4: so in the bone just above my ankle. So my
17:11
Speaker4: 2 options for surgery were either amputation, which would—
17:14
Speaker4: not because I needed it, but because it would allow me to go back to
17:18
Speaker4: the previous lifestyle I had of being really active playing sports,
17:21
Speaker4: or I opted for limb salvage surgery, which is quite
17:26
Speaker4: complicated to explain, but essentially it has removed my ability to
17:30
Speaker4: play sport again or any high-impact activity
17:34
Speaker4: that I used to do. So I think right now I'm kind of just
17:38
Speaker4: taking it day by day. I'm currently relearning how to walk,
17:42
Speaker4: and I'm in a bit of an identity crisis because you
17:46
Speaker4: know, there's almost a massive kind of void in my life.
17:48
Speaker0: Mm.
17:48
Speaker4: A lot of
17:49
Speaker4: my identity was kind of formulated around sport,
17:53
Speaker4: you know, not just physically but like mentally, emotionally,
17:56
Speaker4: socially. You know, a lot of my friendship circles were formed in those environments,
18:00
Speaker4: and it's like now, you know, I've had kind of sports injuries in the past,
18:03
Speaker4: but with the direction that I'm gonna get back to where
18:08
Speaker4: I was before, but, you know, it's a harsh reality to face, knowing that
18:12
Speaker4: even when I am able to kind of walk properly again, I won't be able
18:15
Speaker4: to get back into running or the things I used to kind of love to
18:19
Speaker4: do. So I'm trying to take it day by day and not be in a
18:23
Speaker4: constant state of comparison with, you know, what I used to be.
18:27
Speaker0: And I think that's the thing about finding direction, because we were talking
18:31
Speaker0: about this, is that like that can be,
18:35
Speaker0: actually, I'm going to stay still right now and take it day by day.
18:39
Speaker0: I don't need to have everything figured out. It can be,
18:43
Speaker0: you know, one small step of,
18:47
Speaker0: you know, if a lot of my social life
18:51
Speaker0: was around sport, like, where else can I go
18:55
Speaker0: for those connections? And I'm wondering,
18:58
Speaker0: have— has there been sort of adaptations?
19:02
Speaker0: And then how do you feel about that? Because I think sometimes Sometimes people
19:06
Speaker0: suggest, like, oh, but you could, and you're like, you know,
19:09
Speaker0: I'm gonna swear here, fuck off. I don't want
19:13
Speaker0: to, you know, when it seems like, oh,
19:16
Speaker0: there's an alternative. And actually, when you've been really good at something,
19:21
Speaker0: that can just be hard. It can be
19:24
Speaker0: a loss. And so I'm wondering kind of where you're
19:28
Speaker0: at with that.
19:29
Speaker4: It's tough. I think naturally I'm quite an introverted
19:32
Speaker4: person, and, you know, in those kind of environments,
19:36
Speaker4: you know, I was able to kind of express myself. I've always been quite,
19:39
Speaker4: like, competitive and that kind of thing. So for
19:42
Speaker4: me, it was, like, easy in those environments, and a lot of my friendships,
19:46
Speaker4: you know, were not only formed in those environments but kind of thrived
19:50
Speaker4: and revolved around those environments. So now that it's gone, I wouldn't
19:54
Speaker4: say I've adapted because I'm, I'm still kind of, like I said, in an identity
19:57
Speaker4: crisis. I don't really know where I'm going. I'm kind of just trying
20:01
Speaker4: to focus on like relearning how to walk. Um, like since I finished treatment in
20:04
Speaker4: January, it's kind of been non-stop with like physio and stuff like that.
20:09
Speaker4: So yes, it's tough right now to kind of, you know,
20:12
Speaker4: think too far ahead on, on filling that void.
20:16
Speaker4: I used to be like really obsessed with like controlling the outcomes of things.
20:20
Speaker4: Like I had everything kind of planned out. I'm gonna do it by this date,
20:24
Speaker4: and this is how I'm gonna do it. And, you know, I was really harsh
20:27
Speaker4: on myself with hitting those, those targets. And it's like, now,
20:31
Speaker4: you know, my mum still tells me off, you know,
20:34
Speaker4: for kind of pushing my body too hard. Um, but it's like, it's hard to
20:38
Speaker4: kind of just switch from that mindset.
20:42
Speaker4: So yeah.
20:43
Speaker0: Kind of looking out at the audience, um,
20:45
Speaker0: how many of you would say that you were similar in that, that you were
20:48
Speaker0: like planners? That you had targets for yourself?
20:52
Speaker0: How many of you found it really hard to stop that?
20:56
Speaker0: Yeah, yeah. And it's such a loss, like, that,
20:59
Speaker0: that sense of control, that sense of momentum.
21:03
Speaker0: There's, there's so much, and cancer has so many sneaky
21:08
Speaker0: ways that it can, like, wheedle, like, into our identity.
21:13
Speaker0: Um, and yeah, that that thing of having an identity crisis.
21:17
Speaker0: Can anyone relate to that? Yeah,
21:20
Speaker0: so thank you. Beth, what was going on
21:24
Speaker0: in your life when you were diagnosed?
21:26
Speaker5: Yes, I was diagnosed in 2023.
21:28
Speaker5: Um, I was at the stage with my husband, we're moving on to kind of
21:31
Speaker5: the next stage of our, like, life together, I suppose.
21:35
Speaker5: Um, so I turned 30 in January, and then in February I gave
21:38
Speaker5: birth to our daughter. So I was maternity leave.
21:42
Speaker5: I was, you know, planning time off with her,
21:46
Speaker5: getting used to the fact I was never gonna have any sleep again.
21:50
Speaker5: And then my sister was also pregnant, so we were spending time
21:54
Speaker5: together. And then in April,
21:58
Speaker5: I was diagnosed with breast cancer. So I found a
22:02
Speaker5: lump, kind of at the time thought it was just related
22:06
Speaker5: to pregnancy, but thought, you know, I've never
22:09
Speaker5: felt this before, let's go, you know, get this checked.
22:13
Speaker5: Went to the doctors and then they referred
22:18
Speaker5: me because they, even though they thought it was something related to pregnancy as well,
22:21
Speaker5: but they thought, you know, we're going to refer you. And because you
22:25
Speaker5: hear loads of stories about how, you know, people don't
22:28
Speaker5: get that kind of referral, so I'll forever be grateful that they did that.
22:33
Speaker5: Then a few days later, I was having scans and
22:37
Speaker5: biopsies done at the breast unit, and then a week later,
22:41
Speaker5: I was being led into a room with my husband and told, you've got
22:45
Speaker5: cancer. My daughter was only 8 weeks at the time,
22:49
Speaker5: and yeah, it was very life-changing.
22:53
Speaker5: Literally within the space of a week and a half, my whole life changed.
22:57
Speaker0: Mm-hmm.
22:58
Speaker5: Obviously, I was on maternity leave, so I had plans
23:01
Speaker5: there, but was, you know, now I'd have to kind of fit
23:05
Speaker5: in all the appointments and the treatment and obviously surgery,
23:10
Speaker5: as well as changing nappies and feeding.
23:13
Speaker5: So yeah, it just goes to show how quickly life
23:16
Speaker5: can change, and obviously cancer doesn't care
23:21
Speaker5: what you're doing at that stage in your life.
23:24
Speaker5: And yeah, for me, having them
23:27
Speaker5: 2 experiences happen together, so pregnancy and cancer,
23:31
Speaker5: it's kind of— they're always going to be like intertwined with each other, I think.
23:35
Speaker0: Yeah, and because your body has already been through
23:39
Speaker0: the most massive change and then it's like into another.
23:44
Speaker0: And what you were saying of, you know, having to
23:47
Speaker0: still look after your little one Even when you're feeling
23:51
Speaker0: fatigued, even when you're feeling sick, even when everything's aching.
23:55
Speaker0: And, and are you able to get any sleep?
23:58
Speaker5: No, still not.
23:59
Speaker5: I mean, I was asleep last night, she came into our bed, and then I
24:02
Speaker5: woke up and was like, I don't even remember you coming in. So yeah,
24:05
Speaker5: no, still not anymore, but it's fine. She's worth it.
24:10
Speaker0: And had you plans to expand your family?
24:14
Speaker5: Yes. So before we got married in 2021, And then kind
24:19
Speaker5: of the next stage was kids, and we always kind of dreamt about having 2
24:22
Speaker5: kids. You know, we even kind of picked out names.
24:26
Speaker5: And then now, because of kind of that link
24:31
Speaker5: that I've got between cancer and pregnancy, we kind of have
24:34
Speaker5: now come to the decision not to have any, have any more kids.
24:39
Speaker5: And although that's our choice, we've, you know,
24:42
Speaker5: cancer kind of took that away from us and
24:46
Speaker5: made us make that choice. So yeah,
24:49
Speaker5: it is kind of having to grieve that, that dream
24:53
Speaker5: that we did have.
24:54
Speaker0: Mm-hmm.
24:56
Speaker5: And yeah,
24:57
Speaker5: it's, it's hard, especially when you see kind of other people having kids
25:00
Speaker5: and, you know, their lives have just continued on and going on
25:04
Speaker5: as normal. And I do— mum guilt is a real thing. I did
25:08
Speaker5: not actually understand how much mum guilt is a thing.
25:12
Speaker5: Yeah, I had— I do have guilt because I do feel guilty because
25:16
Speaker5: my daughter now won't have any other siblings.
25:21
Speaker5: But then I look at it like from kind of my point of view.
25:23
Speaker5: You're pregnant for like 9 to 10 months. My worry,
25:27
Speaker5: you know, there's always going to be that worry, is it going to come back?
25:31
Speaker5: And that's not good for my mental health. That's not good for,
25:35
Speaker5: you know, my daughter, my husband, and obviously if
25:39
Speaker5: there's an unborn child as well. But then I look at it
25:42
Speaker5: as if now I am really grateful
25:46
Speaker5: to have one child because I've met obviously so many amazing people within the
25:50
Speaker5: cancer community that, you know, can't have children now,
25:54
Speaker5: or, you know, it is going to be difficult for them to
25:59
Speaker5: have kids. So yeah, it's a lot of mixed mixed kind
26:03
Speaker5: of emotions, grieving, but then also kind of,
26:07
Speaker5: you know, really happy to have one daughter.
26:11
Speaker0: Yeah, and there's so many different stages in
26:15
Speaker0: there, isn't there, of kind of really listening to yourself
26:19
Speaker0: and what that experience means to you. And that's going
26:23
Speaker0: to— like, it's so personal. And like you were saying, they were so interlinked.
26:28
Speaker0: that that isn't something that you can do again.
26:32
Speaker0: There is a choice in there, but there's a grief in there
26:36
Speaker0: as well.
26:37
Speaker5: Mm-hmm.
26:37
Speaker0: And when you've already been stripped of
26:40
Speaker0: so much choice, um, and anything that
26:44
Speaker0: you feel like you can do to make it not come back,
26:47
Speaker0: like, or create a situation that you already know
26:52
Speaker0: that would leave you feeling more heightened, And it makes so much sense.
26:57
Speaker0: But do you feel that that is something that's understood by people
27:01
Speaker0: who haven't had cancer? No.
27:03
Speaker5: People that haven't had cancer
27:04
Speaker5: don't understand a lot, and that's probably about cancer, not about
27:09
Speaker5: everything in general. Sorry.
27:11
Speaker0: No, we get a superior
27:13
Speaker0: intelligence, don't we? That's like given to us in with the
27:16
Speaker0: chemo.
27:18
Speaker5: Yeah. It is
27:20
Speaker5: hard for them to understand, and, you know, I don't blame
27:24
Speaker5: people that don't understand. You know,
27:27
Speaker5: it's not their fault that they can't understand what we've fully
27:30
Speaker5: been through, which is kind of probably a good thing because it means they
27:34
Speaker5: haven't had cancer. But then you have got the
27:39
Speaker5: people that are supportive. You know, I had a really good support
27:42
Speaker5: unit when I was going through treatment. Obviously my husband,
27:46
Speaker5: my daughter, even though she was so young, she still was kind of there after
27:50
Speaker5: treatment, so it was kind of nice to have her there and parents and family.
27:55
Speaker5: But that's where kind of communities like Shine are so good,
27:58
Speaker5: because obviously they bring people together that fully understand
28:02
Speaker5: what you're going through. But sadly, there are people that, you know,
28:05
Speaker5: think as soon as you've finished treatment or you've
28:10
Speaker5: been given the all-clear that, you know, you're back to normal.
28:12
Speaker0: Mm-hmm.
28:14
Speaker5: Unfortunately,
28:14
Speaker5: that's not the case.
28:18
Speaker5: You're kind of trying to find out who that new person is,
28:21
Speaker5: the new direction in your life. I think
28:26
Speaker5: there's so much awareness of what you go through during treatments,
28:30
Speaker5: obviously hair loss, not feeling well, fatigue, but I
28:34
Speaker5: don't think there's that kind of awareness of what we go through
28:38
Speaker5: after treatment.
28:42
Speaker5: Even 2 years out of treatment, I still suffer with the brain
28:45
Speaker5: fog and the fatigue. But there's
28:49
Speaker5: other things as well, like the emotional side of it, physical side of
28:53
Speaker5: it, medically induced menopause, not being able to have
28:57
Speaker5: kids. For me, chemo had
29:02
Speaker5: an issue with my thyroid, so now I'm on thyroid medication
29:06
Speaker5: because of the chemo. Things like, I suffer with
29:09
Speaker5: psoriasis as well, and I'm going through treatment for that, but because I've had cancer,
29:13
Speaker5: I can't have certain types of treatment. So, yeah, I think there's a lot
29:17
Speaker5: of awareness of what we go through during, but not after.
29:22
Speaker5: And, yeah, it's difficult to
29:26
Speaker5: explain, I think, to someone that hasn't been through it.
29:27
Speaker3: Yeah.
29:28
Speaker5: And unless you've been
29:30
Speaker5: through cancer, you won't fully understand it.
29:33
Speaker0: If I had
29:33
Speaker0: a magic wand, that is something that I would so change,
29:37
Speaker0: that understanding. I had someone say to me, but it's in the past.
29:42
Speaker5: Yeah.
29:43
Speaker0: I'm like, really? You want
29:46
Speaker0: to come sit in my body? Like, there is still
29:49
Speaker0: a grief and an acknowledgment. I think someone
29:54
Speaker0: described it as, um, the assumptive
29:57
Speaker0: life, this life that we thought we were going to live, and we You
30:01
Speaker0: know, we all have assumptions, but we don't know that
30:05
Speaker0: they were assumptive until this happens,
30:08
Speaker0: and then we've lost it. And it's often intangible.
30:13
Speaker0: That person sometimes— I don't know if any of you have ever looked at a
30:17
Speaker0: photograph and gone, from before you were diagnosed, and gone,
30:20
Speaker0: oh God, she doesn't know what's about to happen.
30:22
Speaker1: Mm-hmm.
30:23
Speaker0: And like how
30:25
Speaker0: you feel looking at that person. that,
30:28
Speaker0: you know, yeah, it isn't in the past. Like,
30:31
Speaker0: there are complications on many levels that continue
30:35
Speaker0: on. So Matt was on the last episode of the podcast
30:39
Speaker0: about bowel cancer, and Matt used an
30:43
Speaker0: expression when we were talking that I just loved
30:46
Speaker0: because I think it goes a small way towards articulating this.
30:50
Speaker0: He described it— because I think uncertainty Yes,
30:55
Speaker0: it's kind of like this cloudy, changes shape
30:59
Speaker0: idea, but he called it forever uncertainty.
31:04
Speaker0: And I was like, yes! Like, that kind of— that extra word,
31:09
Speaker0: you know, I think it doesn't completely get there, but it's
31:13
Speaker0: like one step towards how monumental
31:17
Speaker0: and how that is never going to go away. And so
31:21
Speaker0: speaking of kind of forever uncertainty,
31:25
Speaker0: where do you find your direction? And Matt, we talked specifically about
31:29
Speaker0: work for you.
31:32
Speaker2: Yeah, I mean, I'm working on
31:33
Speaker2: that. I think that
31:38
Speaker2: there's little catchphrases that people use. We repeat ourselves—
31:41
Speaker2: living in the moment, living for the day. And when I reflect
31:45
Speaker2: on— lots of journeys I've gone through and periods of time with surgery
31:49
Speaker2: and different interventions, there was this point where on my 40th
31:53
Speaker2: birthday the oncology team called and said,
31:56
Speaker2: because of this liver resection didn't work, we're going to try these new drugs
32:00
Speaker2: on you because you're a BRAFer. They just had approved
32:03
Speaker2: these new drugs, and I asked the big question
32:07
Speaker2: of, what does that mean? And you say, well, you've probably 6 months to live.
32:11
Speaker2: Now we're all, you know, the observant around us will notice I'm still
32:15
Speaker2: here.
32:15
Speaker0: Mm-hmm.
32:16
Speaker2: Um, so we celebrate 6 years of cancer-versary,
32:19
Speaker2: but that's actually the weird skewed
32:23
Speaker2: perspective on those things is when you're told a period of time,
32:27
Speaker2: you then have a focus of what am I gonna do with that time.
32:31
Speaker2: And when you are given a cancer diagnosis, in my perspective,
32:36
Speaker2: you You leave the normal track— train track of life, and you never ever
32:39
Speaker2: go back. You never return to the perspective that you had.
32:43
Speaker2: But when you then actually beat the statistics and then
32:47
Speaker2: continue to go on, you can't just celebrate every moment. You've then
32:50
Speaker2: got to, you know, empty the dishwasher. You've got
32:54
Speaker2: to pay the mortgage.
32:55
Speaker0: But can you empty the dishwasher while
32:58
Speaker0: wearing like a tiara and a sash? Well, you know. How do
33:03
Speaker0: you know I do that? I'm coming over
33:07
Speaker0: with flowers.
33:09
Speaker2: Yes, you can. But then,
33:11
Speaker2: you know, it's that constant challenge and motivation
33:15
Speaker2: and actually dealing with that uncertainty. Because if
33:19
Speaker2: you knew a year, if you knew a month, if you knew 5 years,
33:22
Speaker2: if you knew actually by the time the next intervention there's
33:26
Speaker2: a vaccine coming, then, then you can go back
33:29
Speaker2: to some form of planning. And we need goals,
33:33
Speaker2: we need motivation, and, and we need the day-to-day,
33:36
Speaker2: like the kids jumping and needing food at 6 in the morning or
33:40
Speaker2: whatever, and changing beds, you know, because they've woken up in
33:44
Speaker2: the middle of the night. That's really helpful motivation. That gives you a purpose.
33:48
Speaker2: But you also need to have something that's a little bit further down
33:52
Speaker2: the line. You've got to have those bigger reasons to motivate you. Otherwise,
33:56
Speaker2: as we've all touched upon, then you experience the, the long-term
34:01
Speaker2: mental health challenges, the perspectives I have of like, actually, I need
34:05
Speaker2: to get my work mojo back, I need to get my motivation back and my
34:08
Speaker2: care for my business and all that kind of thing. Because we
34:13
Speaker2: all need purpose and we can't actually live for the moment,
34:17
Speaker2: for the day. It feels like that's a
34:20
Speaker2: good and accurate catchphrase, but it's not really helping
34:24
Speaker2: us then reflect on— occasionally
34:28
Speaker2: my wife and I have a moment where we go for a walk and have
34:32
Speaker2: a little chat, and we reflect upon, OK, what have I done in the last
34:35
Speaker2: year? And if something came back, if this happened and
34:39
Speaker2: that happened, would I be reflecting on the last year as
34:43
Speaker2: success? You know, and it's sort of having those moments to question
34:47
Speaker2: and go, okay, these moments mattered. This conversation,
34:52
Speaker2: this being here today would make me reflect
34:56
Speaker2: on my legacy as actually it was worth
34:59
Speaker2: it. That extra time, that time actually they didn't
35:02
Speaker2: think you were going to get, you used it well. And I think that matters
35:06
Speaker2: to me, but I still struggle to know exactly what to do.
35:10
Speaker2: If they said it's— you've got 5 years now, you go, okay, I can plan
35:13
Speaker2: that out. If they said it's less than that, I was like, how much?
35:16
Speaker2: You know, that's—
35:19
Speaker5: yeah.
35:19
Speaker0: So it's really kind
35:21
Speaker0: of, you know, um, a weighing up of what
35:25
Speaker0: you said about those things that nourish you. A lot of us are driven by
35:29
Speaker0: kind of a sense of purpose or a sense of like, yeah, like accomplishment,
35:33
Speaker0: like the things that we find nourishing in whatever way.
35:37
Speaker0: Um, but also finding the space
35:40
Speaker0: to kind of go, okay, at what,
35:45
Speaker0: at what cost benefits? Um,
35:48
Speaker0: and actually sometimes going a bit easier on yourself,
35:51
Speaker0: um, can get you there. Um, sometimes make
35:56
Speaker0: adjusting what you need or what you're aiming for.
36:00
Speaker0: And so have you found that like over time you've tried different
36:06
Speaker0: strategies? I loved what you called your medical admin.
36:10
Speaker2: Well, I think one of the things I realised is that I was giving recommendations
36:14
Speaker2: to other people that were joining the stage 4 bowel cancer
36:18
Speaker2: forum that I wasn't applying myself. So it was the fact
36:22
Speaker2: that actually I did need to have some structured counselling and
36:25
Speaker2: found a local charity that provided that, because I
36:29
Speaker2: needed to actually reframe things. And we'd made
36:33
Speaker2: light of cancer. We talked about it, and I still do with
36:37
Speaker2: the kids, and they're quite— they're comfortable with that term. It hasn't got the,
36:40
Speaker2: the power that it had when we all first heard that word,
36:44
Speaker2: and it shouldn't have for their age group because, you know, the solutions
36:48
Speaker2: will come in there for that generation. And that's absolutely my,
36:52
Speaker2: my belief. And so I realized that Daddy going
36:56
Speaker2: for a treatment had turned into Daddy going for a
37:00
Speaker2: treat. He's having an afternoon off.
37:05
Speaker2: And, and because it started in COVID and they never really experienced
37:09
Speaker2: that, there was a period that I think my wife still probably absorbed that
37:13
Speaker2: same perspective. So we did actually, when things reopened up,
37:16
Speaker2: and they— because they had something to support the kids as well, we went— my
37:21
Speaker2: wife and I saw the wards, you know, it's not to go, look how bad
37:24
Speaker2: this is, but because actually the nurses do as best they
37:28
Speaker2: can to make it upbeat and vibrant. But I was
37:31
Speaker2: blurring, yeah, medical admin with just
37:34
Speaker2: some time off. And actually one of the things my counsellor was
37:38
Speaker2: saying was like, you've got this pie chart of life. For many people, their medical
37:42
Speaker2: admin might be a paracetamol one day a week.
37:45
Speaker2: For us, it's a bigger pie chart. Don't blur that into
37:50
Speaker2: time with yourself or doing something you care about. It's an entirely
37:53
Speaker2: separate thing. It was having that. That was one thing I think that really helped.
37:57
Speaker2: It's just actually sort of splitting out,
38:01
Speaker2: working out actually what you need.
38:04
Speaker2: Treatment isn't the same as giving yourself a break to work on
38:08
Speaker2: something that you care about and sort of me time.
38:11
Speaker1: Yeah.
38:12
Speaker0: I think
38:12
Speaker0: after cancer— well, maybe at any time, actually— the
38:16
Speaker0: idea of going to therapy, like, I think sometimes it can feel
38:20
Speaker0: like it's quite personal. There's something about calling it
38:24
Speaker0: medical admin. It's like, no, I've been through shit. This is part of what I
38:27
Speaker0: have to do. Like, that it's just a part of it. That it's not,
38:31
Speaker0: like, an extra that we need. And,
38:34
Speaker0: again, if I had my magic wand, you know, there would be couples
38:38
Speaker0: counselling for everyone going through cancer, there would be
38:42
Speaker0: counseling individually for everyone going through, there would be— that
38:46
Speaker0: would be as equivalent as taking time
38:49
Speaker0: off for treatment. Although now you've got me thinking,
38:53
Speaker0: maybe we should be calling it something else
38:57
Speaker0: so it doesn't sound quite like we're going to get,
39:00
Speaker0: you know, a spa. You have given me all so much to
39:04
Speaker0: think about. And also, I think lots of ways to think
39:08
Speaker0: about this, that, you know, we can go easy on ourselves. Like, if we
39:12
Speaker0: are like feeling like, oh my God, I've lost all direction,
39:16
Speaker0: that's part of it. But also feeling like if there is a day,
39:20
Speaker0: I thought we've got a bit of energy today, actually being
39:23
Speaker0: curious about what might be nourishing going forward.
39:28
Speaker0: I think we've got time for one question from the audience.
39:32
Speaker0: microphone at the ready. Oh, Blessing's got
39:36
Speaker0: a question. Hi.
39:39
Speaker5: Hello everyone,
39:40
Speaker5: and thank you so much for sharing your perspective
39:45
Speaker5: and insights. It looks like every job application,
39:49
Speaker5: because I declared disability, it looks like they
39:53
Speaker5: just— as soon as they see that, they just turn me down.
39:56
Speaker5: Maybe I'm not giving it the quality that it needs
40:00
Speaker5: when I'm doing the application because the brain fog is still there,
40:04
Speaker5: the memory loss, but it is not easy for
40:08
Speaker5: me to get that job I want.
40:10
Speaker0: So can you just
40:12
Speaker0: share with me how you were able to do that? Yeah, and can I say
40:15
Speaker0: I so relate to that,
40:19
Speaker0: Blessing. And why do they make job applications
40:23
Speaker0: so boring, right? Like, I mean,
40:26
Speaker0: brain fog or not, they are mind-numbing.
40:29
Speaker0: I know, Matt, you work for yourself, so that's how
40:33
Speaker0: you found a way to do it.
40:35
Speaker2: Tough boss. Yeah,
40:36
Speaker2: yeah, yeah. I mean, my perspective was that in a way that
40:40
Speaker2: meant that I was able to give myself the time off I needed, but at
40:44
Speaker2: the same time I was responsible to get work in. So that perspective,
40:48
Speaker2: I actually think there's, you know, untapped skills potential in
40:52
Speaker2: the cancer community that you've got to work out a way actually that these,
40:55
Speaker2: you know, people with skills and knowledge and perspective, lived experience
41:00
Speaker2: that's got value. But I've not had to reapply for a job because I've
41:03
Speaker2: kept myself employed. I didn't fire myself.
41:07
Speaker2: So yeah, maybe someone else has got a different perspective on
41:11
Speaker2: that.
41:11
Speaker3: I've recently applied for a casual research
41:14
Speaker3: receptionist thing, which I thought would be perfect because
41:18
Speaker3: I will be able to assess the project and
41:21
Speaker3: think, okay, maybe this week I can do it, the next week I can't
41:25
Speaker3: do it. So maybe looking into something like that could be helpful.
41:29
Speaker3: But I can tell you, Blessing, I've had the interview. I think
41:33
Speaker3: the recruiter loved me and everything's fine, but now I need
41:38
Speaker3: a month rest after the interview before actually looking
41:42
Speaker3: for stuff because the anxiety just goes up. Like, oh,
41:45
Speaker3: what if I feel shit? What if I can't do those 4 hours?
41:49
Speaker3: What if this? What if that? And just a very
41:52
Speaker3: quick thought, obviously jobs are very
41:56
Speaker3: important and we all need money, but if anyone
42:00
Speaker3: feels very bad because they're not working,
42:04
Speaker3: because I am, I think everyone thinks I'm a Lazy
42:08
Speaker3: ass. Well, if you were a millionaire,
42:11
Speaker3: no one would judge you for not working. Everyone would applaud
42:16
Speaker3: you for just helping people and going volunteering.
42:19
Speaker3: So maybe you can look at it from this perspective.
42:24
Speaker3: If you can't work now, well, maybe that's
42:28
Speaker3: okay and you don't have to feel bad about yourself.
42:31
Speaker0: Absolutely. If there's anything that we're against, to shine,
42:35
Speaker0: it's feeling bad about yourself. Because that
42:40
Speaker0: is— it's so hard. Again, coming back to where we were at
42:43
Speaker0: the beginning, that shoulding on ourselves. And it is a
42:47
Speaker0: practice, right, of kind of like, where do we give ourselves some grace
42:52
Speaker0: that what we've been given is really shit? And actually,
42:55
Speaker0: maybe going back full-time isn't. And I also
42:58
Speaker0: think it depends on the kind of work. Because I think there's work that gives
43:03
Speaker0: something to you, and there's work that drains
43:06
Speaker0: you. And I know the job I was in was a drainer
43:11
Speaker0: when I was diagnosed. When they called me up to come back to work,
43:14
Speaker0: I laughed and then cried on the phone. I was
43:18
Speaker0: like, I will literally be underneath my desk hiding
43:23
Speaker0: from the lights, rocking back and forth. Do you want me back?
43:26
Speaker0: And they were like, no, it's okay.
43:27
Speaker1: You're fine.
43:27
Speaker0: You can take longer. It was
43:29
Speaker0: not a place that I could do that. And yet, I've met
43:32
Speaker0: so many other people that actually, when they went to work,
43:36
Speaker0: they felt like, ooh, actually, I got to have this
43:40
Speaker0: other side of my personality. It gave me something. I feel
43:44
Speaker0: good when I'm there. And so, yeah, it can be
43:47
Speaker0: really thinking about what environment you're going
43:50
Speaker0: into. And I loved what Matt said. I think we've got
43:55
Speaker0: Some mad skills and superior intelligence from what we've been through. Why not claim
44:00
Speaker0: it all? So this is going to be the
44:03
Speaker0: end of our podcast today. I want to say a
44:07
Speaker0: massive thank you to our panelists.
44:13
Speaker0: A massive, even bigger applause to all of
44:17
Speaker0: you listening, all of you here today. to Radio Facilities
44:22
Speaker0: for sponsoring our podcast. And it is tradition
44:25
Speaker0: at the end of the podcast that we say, um, till next time,
44:30
Speaker0: bye! So we're gonna do that all together. Does that sound good?
44:33
Speaker0: Till next time, bye!
44:37
Speaker0: This is not your grandma's cancer show.
44:40
Speaker2: Not your grandma's
44:41
Speaker2: cancer show.