Latest / Not Your Grandma’s Cancer Show / Lymphomas and Leukemias

Transcript

Lymphomas and Leukemias · Not Your Grandma’s Cancer Show

• 0:00
  From Shine Cancer Support, this is Not Your Grandma's Cancer Show.
• 0:05
  This is Not Your Grandma's Cancer Show.
• 0:09
  Hi, I'm Tate Ndurak, and today we're looking into what it's like to have a blood cancer,
• 0:15
  such as lymphoma or leukemia, sometimes known as high-grade blood cancers.
• 0:21
  So I've got three great guests on the show today.
• 0:24
  We've got Christian, who was only 21 and had just moved out of home for the first time when he was diagnosed.
• 0:31
  Hello.
• 0:32
  Satvir, also in his 20s, had just gotten married.
• 0:35
  Hello.
• 0:36
  And Kynwin, who's been on the podcast many times.
• 0:39
  Hi.
• 0:40
  She had just given birth to her daughter, Mary, when she was diagnosed.
• 0:44
  So let's get started.
• 0:45
  This is Not Your Grandma's Cancer Show.
• 0:48
  Not Your Grandma's Cancer Show.
• 0:50
  So I'd love to start this today by finding out, had you ever thought of a blood cancer before?
• 0:56
  What did you think a blood cancer was?
• 0:59
  Let's go to Christian first.
• 1:01
  So I knew roughly what blood cancers were.
• 1:04
  That was kind of the extent of my knowledge.
• 1:07
  Just I knew it existed and it was something that happened.
• 1:10
  I knew the basics, that it was, you know, in your blood and that was about it.
• 1:14
  Yeah, yeah.
• 1:15
  And what about you, Kynwin?
• 1:17
  What had you heard about it before?
• 1:19
  To be honest, I'm not sure I'd ever heard of anyone say blood cancer.
• 1:23
  I was told they had lymphoma and I had vaguely heard of lymphoma and thought that it was a cancer,
• 1:29
  but I really didn't know much at all.
• 1:33
  Yeah, it was a whole new world to me.
• 1:36
  I think that's the thing, isn't it?
• 1:38
  Is that getting this kind of cancer, there isn't necessarily a lot of information about it out there.
• 1:44
  Or what there is, is quite vague.
• 1:46
  Satvir, how was it for you?
• 1:48
  I didn't have a huge knowledge on it.
• 1:52
  I knew about leukemia and that was a blood cancer.
• 1:55
  I mean, I studied dentistry, I'm a dentist.
• 1:57
  I would have learned about cancer at university, but not really deep diving into it,
• 2:02
  not knowing what it means, how it would affect it, what the different outcomes are.
• 2:07
  And just sort of within the different cancers, lymphoma, leukemia,
• 2:11
  how many different types there were and whatever you're diagnosed with,
• 2:15
  there's a different sort of treatment for it.
• 2:18
  And yeah, it was like a totally new world for me.
• 2:21
  And even when I got my diagnosis, I was like, okay, so was it Hodgkin's?
• 2:25
  Was it non-Hodgkin's?
• 2:26
  And it's, yeah, a totally new world.
• 2:28
  Yeah, yeah.
• 2:29
  I remember when you said to me, I didn't, I forgot which one it was, you know,
• 2:34
  because yeah, it's all new terminology.
• 2:37
  And I think a lot of these things, we have a sense with other cancers that there's a tumour
• 2:42
  or a sign to look for or surgery or this understanding of a certain type of chemotherapy.
• 2:49
  What were your first symptoms?
• 2:51
  Because that's something, again, that's a bit different with having, you know,
• 2:56
  a high-grade blood cancer like the ones that you had.
• 2:59
  Christian, what kind of symptoms were kind of the first sign that something wasn't quite right?
• 3:04
  I had quite a long time before I was actually properly diagnosed.
• 3:09
  When I was sort of going through it, I had an infection in my mouth in between my two molars,
• 3:15
  I think it was, and it ended up necrotic.
• 3:17
  That happened.
• 3:18
  I was going back and forth to A&E to try and get antibiotics that weren't working.
• 3:22
  I started getting really weak at work.
• 3:25
  Unfortunately, later on, I got diagnosed with COVID before I got hospitalised with my cancer.
• 3:30
  But I was just incredibly weak and I was putting it up to me having COVID.
• 3:35
  But unfortunately, it turned out to be leukaemia.
• 3:37
  And I think that kind of masking of other things,
• 3:40
  is it just something that's in my mouth that's, you know, just taking a long time to heal?
• 3:45
  Is it just I'm feeling weak at work?
• 3:48
  Am I run down?
• 3:49
  Yeah.
• 3:50
  And Saphir, what were some of your early signs that something wasn't right?
• 3:54
  I was really tired all of the time.
• 3:56
  And initially, I put it down to, as you mentioned, recently got married.
• 4:00
  I've got two sets of families now.
• 4:02
  My weekends are really, really busy.
• 4:03
  And then it started to get to about nine months after I got married and I was still exhausted all the time.
• 4:08
  The mid-twenties, you think you should be like full of energy.
• 4:12
  You're sort of reaching the peak of your life.
• 4:14
  I was getting concerned.
• 4:16
  I asked my dad, when you were my age, you worked like 12-hour shifts.
• 4:20
  Were you tired?
• 4:21
  And he was like, yeah, you just sort of got on with it.
• 4:23
  And I was coming home really grumpy, really tired.
• 4:26
  And I kind of knew something wasn't right.
• 4:29
  But cancer's the last thing in your head, you think.
• 4:32
  Vitamin deficiency or something.
• 4:34
  So that was sort of the long-term symptoms I was getting.
• 4:38
  I was getting ill a lot more often.
• 4:40
  What prompted me to go to A&E is I had a rash all over my body.
• 4:44
  My resting heart rate was 120 and severe chest pain.
• 4:48
  And then also at the same time, I got a lump in my neck.
• 4:50
  So within the space of about two weeks, all the sort of symptoms that were there, that pushed me to go to A&E.
• 4:57
  I spent a few weeks in hospital before I got the diagnosis.
• 5:02
  I mean, one of the things is that it's really hard to kind of benchmark tiredness, isn't it?
• 5:09
  And we don't have enough words to describe it.
• 5:12
  And that thing of asking your dad, were you tired?
• 5:15
  I think when you've experienced that soul, bone exhaustion, it's different to anything else.
• 5:25
  But I think it's really, really hard to explain that to anybody.
• 5:29
  Khai Nguyen, coming to you on that.
• 5:32
  Mine was a little bit complicated because I was pregnant and I had my daughter.
• 5:38
  And then she was born prematurely because I became really ill.
• 5:41
  And I think I probably became really ill and had to have her delivered early because I had cancer.
• 5:49
  But obviously, I think when you're pregnant, your body kind of suppresses your immune system.
• 5:54
  So I felt really, really tired, like everyone says.
• 5:58
  But I didn't really have a lot of kind of classic symptoms until my daughter was born.
• 6:03
  And then once she was born, I had all of them like night sweats, fevers, back pain, lumps, lack of appetite, throwing up.
• 6:13
  But again, those can be quite difficult to benchmark.
• 6:18
  And so everyone told me I was in the hospital for about three and a half weeks and people kept saying it's pregnancy complications.
• 6:24
  Or maybe you've got I was traveling a lot for work.
• 6:26
  Maybe you've got other illnesses.
• 6:28
  But I think once I sent a hematologist in, he must have gone like tick, tick, tick, tick, tick, right?
• 6:33
  Like, oh, you've got all of the symptoms.
• 6:35
  It's just you really need someone who can put them all together and see.
• 6:38
  Yeah, this isn't normal.
• 6:39
  This isn't normal.
• 6:40
  This is not normal for a younger, healthier person to be going through all of this.
• 6:44
  Yeah.
• 6:45
  And from hearing all of your stories, there is something about kind of having these symptoms,
• 6:50
  them not necessarily raising an alarm right off the bat because they can be other things,
• 6:59
  especially when you've got other things going on in your life, you know, whether it be kind of training and marriage and you just had your baby, you know,
• 7:07
  just moving into your first place away from home.
• 7:11
  But then kind of getting really thrown into this very, very different world very fast.
• 7:18
  Christian, can you give me a bit of a snapshot of your life right before you got sick?
• 7:26
  I had just moved into a new flat.
• 7:30
  You know, it was the first time I'd ever moved away from home.
• 7:34
  away from family, so they hadn't seen me for a while.
• 7:37
  And then I started a new job as well.
• 7:39
  So things were quite hectic.
• 7:41
  It just sort of all sort of hit at the same time.
• 7:44
  And then, yeah.
• 7:45
  So you were away from home kind of for the first time when you got that sick.
• 7:52
  And can you tell me about that day that you thought, actually, I need an ambulance?
• 7:59
  I couldn't move at all.
• 8:01
  I was literally stuck in bed with my ex-partner at the time.
• 8:05
  And I turned to her and I said, I can't.
• 8:08
  I've got to go to hospital and I can't drive myself.
• 8:10
  I was out with it, but I was aware enough to go.
• 8:13
  Me driving to hospital is not a good idea.
• 8:15
  I need to call an ambulance.
• 8:16
  I called an ambulance and they said they'd be able to come to me in 24 hours.
• 8:21
  You know, I think worries started to set in there.
• 8:23
  I messaged my sister and told her that I'm going to hospital.
• 8:27
  20 minutes after I sent that message to her, I get a knock on my door and it's my mum.
• 8:31
  And she looks at me and goes, you need to get in the car and go into hospital.
• 8:35
  Once you got to the hospital, what were they thinking was going on with you?
• 8:40
  After my mum left, she wheeled me into hospital because at that point I just lost all strength in my legs.
• 8:46
  So she wheeled me in.
• 8:48
  They had to keep me isolated because I still had Covid symptoms at the time and was still testing positive.
• 8:54
  So they took me into the room, took blood straight away.
• 8:57
  I mean, the results didn't take long.
• 8:58
  It was maybe half an hour.
• 9:00
  The nurse comes in and she says, my job today is to keep you alive.
• 9:04
  The whirlwind of that?
• 9:06
  Shortly beforehand, you're thinking, do I wait 24 hours for an ambulance?
• 9:13
  I know I can't drive myself there.
• 9:15
  You're figuring it out to suddenly being in hospital and the nurse talking about your life being on the line.
• 9:23
  Were you able to take that in at the moment?
• 9:26
  Or how were you able to kind of process hearing that?
• 9:30
  I think I was kind of lucky and unlucky to be that critical at that point because I didn't really know what was going on until they started putting blood products into me.
• 9:40
  And then I sort of started to talk a bit more what was going on.
• 9:43
  But I think it took at least a couple more days because I think it was the 12th of June.
• 9:53
  I was hospitalized.
• 9:54
  And then obviously two days later, I found out officially that it was leukemia.
• 9:59
  I don't think it's until the doctor sits down and sort of goes, well, we think we know what it is.
• 10:04
  Would you like to know kind of thing?
• 10:06
  And then you go, oh, it's bad.
• 10:08
  So it took me a couple of days to fully appreciate the picture of it.
• 10:12
  But yeah, it was a bit rough.
• 10:15
  And then did you start treatment straight away?
• 10:18
  So the original plan was to get rid of the COVID.
• 10:22
  I think it was either the 14th or the 15th.
• 10:25
  They basically turned around and said, the things are going too far, too quick.
• 10:29
  We're going to have to start treatment for you.
• 10:32
  And it was literally the next day after that they started it.
• 10:35
  I signed papers, obviously, for it.
• 10:37
  And, you know, seven weeks later, I'm walking out of hospital.
• 10:41
  Again, that kind of being hospitalized straight away doesn't really give you a free moment, does it?
• 10:49
  To really think about what you're going through and what support you might need or meet anybody else going through that.
• 10:58
  I started treatment.
• 11:00
  You know, I moved around a couple of times to ICU and back again.
• 11:05
  I never saw any other patients or anything like that until, you know, I started going to Oxford for treatment.
• 11:11
  But that's months later.
• 11:12
  I had a really good person from TYA who sort of helped us with a lot of financial stuff.
• 11:18
  Mark said, well, yeah, apart from that, it was obviously it was more a case of physically supporting me rather than mentally at the time.
• 11:26
  I mean, talk about being taken out of your regular life and then literally being isolated in this very different reality.
• 11:34
  When you had that first treatment, how did you feel as a result?
• 11:41
  Like physically, how did the treatment affect you?
• 11:44
  I felt broken, really broken afterwards.
• 11:47
  You know, seven weeks is a long time.
• 11:48
  There was a lot of complications.
• 11:50
  And, you know, I went from 15 stone because of the fluids that were pumping into me all the way down to just under nine stone towards the end of it.
• 12:00
  You know, it's a brutal reality.
• 12:03
  Was there anything kind of as you reflect back on that initial seven weeks, is there anything that you think would have been sort of useful in that time?
• 12:15
  A lot of what kept me going through all of that was family, you know, keeping in contact with people as hard as it is.
• 12:22
  There was a lot of times where I just was not with it.
• 12:25
  Keeping in contact with people is important.
• 12:27
  You know, with your family as well, having a support group is quite important in those first couple of weeks.
• 12:34
  But it's going to sound really stupid, but a cooling towel.
• 12:39
  And when did you find out how helpful a cooling towel was?
• 12:45
  I don't know. I think it was something I just ordered off of Amazon.
• 12:48
  Because we obviously, you know, when you've got fevers and stuff, you put towels and stuff over your head.
• 12:54
  And I knew from my time working at a garden centre that people, I knew someone that used one of them before.
• 13:00
  So I knew it existed.
• 13:02
  But yeah, during those neutropenic moments with fevers and stuff, it was incredibly helpful.
• 13:09
  To find a little bit of comfort and a little bit of ease right off the bat is everything.
• 13:16
  I see a kind one smiling.
• 13:19
  I'd love to bring you into the conversation.
• 13:21
  How has it been for you hearing from Christian?
• 13:24
  I mean, my diagnosis was a long time ago.
• 13:27
  But I think it really highlights, I guess, I think what some of the differences are with blood cancers.
• 13:33
  Because in most cases, if you have a kind of a primary tumour, you don't tend to end up just in hospital for weeks and weeks.
• 13:41
  Because you went because you felt terrible.
• 13:43
  And actually something very similar happened to me.
• 13:46
  I got out of the hospital after I had my daughter, had terrible back pain and went back in and then didn't leave for six months.
• 13:54
  And, you know, would never have thought that that would happen to me.
• 13:59
  So, but again, it's a kind of urgency of the situation where, you know, they finally discover what's wrong with you.
• 14:04
  And then they're like, you're really ill and you need to start chemotherapy in two days.
• 14:08
  And in my case, I didn't know anything about chemotherapy, really.
• 14:11
  It was just it was a whole world.
• 14:12
  So I think that's really what it brings up.
• 14:15
  Just listening to Christian, that's the memories.
• 14:18
  Yeah. And again, that isolation, you had just made your family.
• 14:25
  You had little Mary and then and then you're in hospital.
• 14:30
  Can you tell us a little bit what that was like for you?
• 14:33
  And how did you kind of, as Christian was saying, kind of keep that connection going?
• 14:39
  I sort of bounced around a few different boards before I was put on a hematology ward.
• 14:45
  And I really hated being on a ward. It's so noisy.
• 14:48
  There are weird people on the ward.
• 14:52
  There are some lovely people as well, but it's really hard to sleep.
• 14:56
  So when I started treatment, they put me in an isolation room, which actually I like just because I had my own space and I could sleep.
• 15:03
  Obviously, I couldn't see anybody, you know, unless they came in to see me.
• 15:08
  I wasn't allowed out. So it was really hard because I had a newborn baby and I couldn't be with her.
• 15:13
  I mean, my husband brought her in most days to see me when I was well enough.
• 15:17
  He came in every day. And then I had my mom and my sisters, my family, friends as well, come and visit when they could.
• 15:24
  Like when I was well enough, because that's the other thing, you know, it's really nice.
• 15:27
  Like, oh, you want all these visitors.
• 15:28
  But actually, a lot of the time when you're going through that, either mentally or physically, you don't necessarily want all these people around.
• 15:35
  It's a really tough thing to balance, I think.
• 15:38
  It's just very much being taken out of your regular reality and then sitting there thinking, oh, how did this happen to me?
• 15:46
  Not that you'd wish it on anyone else, but I just remember being quite surprised that this was my life all of a sudden.
• 15:53
  Hadn't seen it coming. Wasn't on the bingo card.
• 15:57
  Yeah. And since then, you have co-founded Shine and are co-CEO of Shine.
• 16:04
  And you've met other people with similar diagnosis to you.
• 16:09
  And I'm just wondering, like, what are some of the things that you see that is a bit different to other primary cancers or things that people tend to not understand as much about blood cancers?
• 16:24
  I think the biggest thing, actually, is that, you know, with a blood cancer, it's everywhere.
• 16:31
  It's in your blood. Your body is filled with blood.
• 16:34
  So you don't have a lump that can be taken out in an area where you can have radiotherapy.
• 16:40
  I mean, those things do sometimes happen.
• 16:42
  You might have a tumor that they remove.
• 16:43
  They might use radiotherapy.
• 16:44
  But it's not the same as having, you know, just one primary tumor.
• 16:49
  And so I can remember, for example, when I was in the hospital, someone giving me some kind of mindfulness for cancer patients thing.
• 16:55
  And I was, I'll give it a try.
• 16:57
  But, you know, it was like concentrate on the location of your lump and that the chemotherapy is working.
• 17:02
  And I remember thinking, well, I can't do that because this is my entire body.
• 17:05
  So I think that can be quite hard to explain to people.
• 17:09
  You know, we talked about the tiredness and feeling really terrible.
• 17:12
  I felt absolutely awful before I was diagnosed.
• 17:15
  And actually the first rounds of chemotherapy made me feel better.
• 17:19
  And I think for a lot of people, that's the opposite, because you don't know that something's wrong.
• 17:25
  You might have a lump. Maybe you go to the doctor and then you have to have this treatment that makes you feel awful.
• 17:29
  I actually thought this is a miracle.
• 17:32
  I can get up and go to the bathroom and brush my teeth.
• 17:34
  And I hadn't been able to do that really very well for weeks.
• 17:38
  So there are some different things.
• 17:40
  And then obviously, you know, it can affect your immune system.
• 17:44
  Often blood cancer patients become neutropenic every sort of block or round of chemotherapy that they have.
• 17:50
  Then you might get ill. That can be different than other cancer types.
• 17:54
  So your immune system might be affected in the short or long term as well.
• 17:58
  But the flip side to all of that is I think there are some really interesting treatments coming along for blood cancer patients,
• 18:05
  like CAR T therapy, which hopefully will really mean, you know, make a big difference to all of us.
• 18:11
  So it's not all bad.
• 18:14
  I was going to say, if you haven't listened to the last, it's the episode about rare cancers.
• 18:24
  And you want to know more about CAR T.
• 18:27
  George was on that episode and he's just been through it.
• 18:31
  And he kind of shares a bit about that and how he found other people within Shine who also were going through it.
• 18:38
  And they developed their own little WhatsApp group where they check in with each other because he had treatments new.
• 18:45
  And and actually, there's quite a few things from that episode about having a rare cancer that I can hear.
• 18:51
  And in both Christian and from you kind when about when people don't quite understand when you don't have a lot of knowledge about it coming into it.
• 19:03
  So it's this whole new world. And then when you start to meet other people, you know, they will have all other kinds of cancer.
• 19:11
  But actually meeting other people with a similarish type, let alone the same type, is just that bit more uncommon.
• 19:19
  And so when people do find each other, Kleinwin, have you seen that happen?
• 19:25
  Like when someone is like you? Oh, the same. What's that like?
• 19:30
  Yeah, well, actually, I was just away this weekend running one of our events.
• 19:35
  It's called a Shake Up Max. It's a one night overnight, one night overnight retreat.
• 19:39
  And one of the women who was on that had was stage three non-Hodgkin lymphoma, the same type I had.
• 19:46
  Because, again, also, I think Satvir was saying, oh, did I have Hodgkin or non-Hodgkin?
• 19:52
  When you have one of those, then there's a whole bunch of other different types.
• 19:55
  So there's loads of different types of non-Hodgkin lymphoma.
• 19:58
  But one of the women on that retreat had something similar.
• 20:01
  And you just sort of think like, yeah, it's really nice to be able to chat to somebody about those treatments,
• 20:06
  because sometimes you might be in a room, say, like for me, I might know of a lot of women that have had breast cancer.
• 20:12
  And for them, that's another very unique experience where you're looking at reconstruction and different types of surgeries.
• 20:18
  But when you have blood cancer, you don't have any of that.
• 20:21
  The other thing that's quite difficult is certainly for my type of blood cancer.
• 20:25
  Once you finish treatment, there's no medication that you can take to help make sure it doesn't come back.
• 20:30
  It's literally sitting there and crossing your fingers.
• 20:33
  So that's kind of a nice thing, weirdly a nice thing to be able to chat to somebody about.
• 20:39
  Also, both of us, our favourite biscuits were Jaffa Cakes.
• 20:42
  So that was a nice experience as well.
• 20:48
  Controversial, I know. I know some people think they're not biscuits.
• 20:52
  I have had a really good Jaffa Biscuit Cake that was actually officially a cake and it was very good.
• 21:00
  And it was vegan because I can't actually eat the original.
• 21:03
  You can also get doughnuts, Jaffa doughnuts.
• 21:06
  Satvi, how has it been for you hearing from Christian and Kainwan?
• 21:09
  Just as Kainwan was mentioning, talking to other people that have gone through it.
• 21:14
  Yeah, I agree with that massively.
• 21:18
  One of my best friend's cousins was diagnosed with ALL Leukemia about a year before I got my diagnosis.
• 21:29
  And it's really hard to put into words, but just sort of talking to someone and saying,
• 21:34
  oh, I'm Neutropenic and not having to explain what that means kind of made it normal.
• 21:39
  Or like he was going to have Leukemia the day after I spoke to him.
• 21:44
  I was like, all right, go smash it out, bro.
• 21:46
  And he was like, that's really weird because like I can talk about it.
• 21:50
  And it's almost as if I'm just talking about everyday life, about the weather.
• 21:53
  And it's talking to someone who really understands.
• 21:56
  So talking to people massively, massively helped to make it feel normal.
• 22:01
  Yeah. And I can see that on both ends, how it must have felt for you to hear him go,
• 22:07
  oh, my God, that just felt like so normal.
• 22:10
  And having that kind of camaraderie and language, that understanding of what things mean.
• 22:19
  Can you take me back to the day when you got that first ambulance journey into the hospital?
• 22:28
  What that was like for you?
• 22:30
  When I first went to A&E, I'd just come back from holiday in Cape Verde.
• 22:36
  So whilst I was there, I was having some amoxicillin because I was getting some chest pain.
• 22:40
  And initially I thought that pain was just a chest infection.
• 22:44
  And whilst I was there on the last day of holiday, I came up with a really bad rash.
• 22:48
  And that's when my resting heart rate was 120.
• 22:51
  And I put that down to an allergic reaction to the antibiotics.
• 22:55
  I hadn't had antibiotics for about 15 years up until that point.
• 22:59
  So I had a telephone GP consultation and I told her as I was reeling off all my symptoms,
• 23:07
  I was like, oh, God, actually, yeah, this is really bad.
• 23:10
  And she was like, I don't know what to say to you.
• 23:12
  You're sat in a departure lounge.
• 23:15
  You really should be going to a hospital.
• 23:17
  As soon as you land, drive yourself straight to A&E or get to A&E as soon as you can.
• 23:22
  Again, I went to A&E. I was like, look, it's probably an allergic reaction.
• 23:24
  Don't worry about it. It's fine. But they were great.
• 23:26
  They really insisted on me staying after they'd done my bloods, looked at my symptoms and everything.
• 23:33
  I stayed the night. And then the day after I had a CT scan of my chest.
• 23:38
  And that's when they picked up I had effusion of my heart.
• 23:43
  So that's a buildup of fluid around the layers of your heart.
• 23:47
  Essentially, your heart sits in a sack and that sack was building up with fluid and squeezing the heart and stopping it from filling up with blood.
• 23:55
  And that's right. The heart rate was raised to compensate for that.
• 23:59
  So that was my first ambulance journey was because as soon as they saw that, they were like, right,
• 24:05
  you need to go to a heart specialist hospital, which was crazy.
• 24:09
  I think during all of it, I never really processed how bad everything was.
• 24:15
  Like I was there laughing and joking. My mum and my wife were there in the ambulance.
• 24:20
  They looked really sort of concerned for me. I just was just like laughing at them like, guys, man, you look like you've seen a ghost.
• 24:26
  It's fine. Don't worry about it. And then they kept me in hospital.
• 24:31
  They all thought it was an infection because my white blood cells were high and that's the route everyone was going down.
• 24:37
  And I was pumped with antibiotics for about two or three weeks and nothing was they were doing cultures for all different types of infections and nothing was coming back positive.
• 24:46
  So then they'd done a needle biopsy and then they sent me home.
• 24:50
  At that point, I'm thinking, OK, they've sent me home. I'm probably fine.
• 24:54
  But I felt really, really rubbish. Like I was thinking in my head, OK, so I've been sent home.
• 24:59
  I should probably make arrangements about returning to work next week, but I just wasn't ready for it.
• 25:04
  Something inside me, I was like, no, I'm not good. I feel terrible.
• 25:08
  Yeah, literally four days after they sent me home, I had to go back because the rash returned.
• 25:13
  Lips swelled up. I looked pretty bad again. And then the effusions returned as well.
• 25:18
  So that stage, they've done a excisional biopsy where they actually take a tissue from the lymph node.
• 25:25
  And I had a different surgeon then and he was super savage.
• 25:28
  He came back in and he says, yeah, I've seen you. Like, no, no, it didn't beat around the bush at all.
• 25:33
  And he's like, yeah, I saw your fluid. It's probably lymphoma.
• 25:37
  Even at that stage, I was like, yeah, OK, it's probably lymphoma, but there's other things that it could be as well.
• 25:44
  It's it's a differential. It could be anything at that stage.
• 25:47
  And in my head, I'm thinking I'm I'm young. I eat relatively healthy. I don't smoke.
• 25:52
  Surely not me, but it won't it won't be cancer. And I didn't think it was at all.
• 25:58
  And then they took me off the antibiotics whilst they're waiting for the results of the lymph node.
• 26:03
  And I started to feel better. And I got to the point where I was like, OK, great.
• 26:08
  I'm probably good to go to work in a few days time. I feel great.
• 26:12
  And then they deliver the news on a Friday evening. And, yeah, that's when sort of the world just sort of comes crashing down.
• 26:20
  There's like silence and you kind of don't know what to do.
• 26:26
  My wife was with me at the time. She was she took it. She was there to take the news.
• 26:32
  I was there processing it. I sort of saw her. She's crying her eyes out.
• 26:35
  And I'm like, God, right. OK, like next steps.
• 26:38
  And that's when they then said you're going to Guy's in London, which is about an hour journey away from the hospital.
• 26:45
  And that ambulance journey was, again, like it's odd.
• 26:49
  It's just odd, weird going through the streets of London where you'd usually go through the streets of London and it's you're having a good time.
• 26:56
  You've been a tourist for the day, but you're going and it almost feels like you've been transported to a totally different life.
• 27:03
  And at this stage, I couldn't remember whether it's Hodgkins or non-Hodgkins.
• 27:07
  You don't know what you get yourself into. And that was.
• 27:10
  Yeah, I mean, I remember that that journey is crystal clear.
• 27:16
  It's just me and my wife in there sort of waiting to see what the next few months would have held for me.
• 27:23
  Yeah, I mean, it's such a surreal moment.
• 27:27
  That thing of like you're in this familiar place that you're normally having a good time,
• 27:32
  but you're seeing it from this completely different vantage point from inside an ambulance with this kind of new reality.
• 27:41
  But it's not just you, but it's also like how the people around you, your loved ones are also all processing it at the same time.
• 27:53
  And Christian, you had spoken about your family and your sister.
• 27:57
  How was that for you when managing how you were feeling, but also how they were all feeling?
• 28:04
  It's like Satvin said, when you get that news and you're having to sit there and be like, you know, joking about it,
• 28:11
  having to tell your parents, this will be fine, I'll get through this, this will be easy.
• 28:16
  Not easy, but, you know, you've got to joke and laugh about it.
• 28:20
  And, you know, I think the amount of strength that I showed to my parents probably got them through it as well,
• 28:27
  just as much as it got me through it, you know.
• 28:29
  Everyone's first time is absolutely brutal.
• 28:32
  You know, as long as you show a strong face for them, they can keep showing a strong face for you and, you know, you can feed into each other.
• 28:39
  But, yeah, it was hard for my family, especially my brother and sister, just really starting their journey into GCSEs and stuff.
• 28:49
  Yeah, so they were younger than you and you were their big brother and you had mentioned to me that that kind of changed a bit the dynamic of your relationship.
• 29:02
  It's really hard being the older brother and, you know, you're meant to be this, not symbol of strength, but, you know,
• 29:09
  you're meant to be the one that they look up to and you come out of hospital and they see you for the first time and you're just a ghost of yourself.
• 29:17
  You know, it's hard for them.
• 29:19
  You know, it was hard for me having to, you know, see how worried they were about me all the time.
• 29:24
  Both of you sort of mentioned this using the word strength and humour.
• 29:29
  And I imagine during times when no one was visiting, there were other emotions coming in.
• 29:37
  Was there anyone that you could share those emotions, the complicated, scarier ones?
• 29:45
  I mean, I was super, super blessed.
• 29:47
  My wife is absolutely incredible and she can read me and she would know when I just needed, like going through your cycles of chemotherapy,
• 29:59
  you'll have, for me, it was like you'd have 10 days were really bad and the first three or four were awful.
• 30:06
  And there'd be times where I just didn't have the energy to talk.
• 30:09
  And there was actually quite a few times where I just stopped talking mid-sentence because I'd run out of energy and she was just laughing.
• 30:15
  She was like, run out of energy.
• 30:16
  I was like, yeah.
• 30:17
  And it was nice having that understanding.
• 30:19
  And she wouldn't be worried.
• 30:21
  She would know, right, this is what we're going to go through for the next few days.
• 30:25
  One of the hardest, obviously, it's tough having chemo.
• 30:28
  You're in pain, you're gassy, it's rubbish.
• 30:32
  But for me, the emotional side was how tough it is for everyone else around me to watch me going through that.
• 30:40
  It was, that was what I really felt guilty about, sort of having to, I'm putting everyone through this.
• 30:49
  My mum and dad, I'm putting them through this, like no parent should have to see their child do this.
• 30:57
  I should be looking after them, not at this stage of life, they're looking after me.
• 31:02
  And it was, that's, yeah, I think that's what I probably struggle the most with, is seeing the people around me.
• 31:09
  And I often think it's almost as hard as it is for them as it is for me, because I know in myself how I'm feeling.
• 31:19
  And they might ask me how I'm doing and I'll say, yeah, I'm fine.
• 31:23
  And I might actually be fine, but they might be thinking, oh, he's just saying that because they just want to reassure me.
• 31:29
  Where I'm actually fine, I'm just tired, I don't have the energy to talk.
• 31:33
  And, you know, like if you're in pain, you know, like what I, the way I got through it was like, well, this is what I have to go through.
• 31:41
  And actually, it was funny.
• 31:45
  I said to my granddad, like, I'm feeling really tough.
• 31:48
  I feel really rubbish.
• 31:49
  Like it's, I've got this pain, I've got that pain, I feel really weak.
• 31:52
  And he was like, good, that means your chemo is working.
• 31:54
  So it's attacking your cancer cells.
• 31:57
  So that was a nice way to look at it.
• 32:00
  Having people around to talk, having my wife, sister, mum and dad, it was, they made it easy for me.
• 32:06
  Yeah, that was the thing I always used to say, they're making it easy for me.
• 32:10
  Both of you acknowledge that the way the world seems kind of upside down and how that's sometimes reflected in relationships.
• 32:19
  And whether that being the big brother, you're supposed to have a certain dynamic or, you know, that was just the dynamic that was there before.
• 32:28
  And then it shifts.
• 32:30
  And then, Safia, you were saying, I should be the one looking after my parents, not them having to do that for me at this time of life.
• 32:38
  And that bringing up this feeling of guilt about what everyone else is going through.
• 32:44
  And Kainwyn, is that something that comes up with other people at Shine?
• 32:50
  The difficulties for the sort of the partners or the family members, they don't really get acknowledged a lot.
• 32:56
  So we hear a lot from partners, brothers, sisters, parents who are really struggling.
• 33:03
  But I think they're in a really difficult situation because, like Safia says, it's not happening to them.
• 33:08
  They are surrounding the person who it's happening to.
• 33:12
  And so I think sometimes they feel, I shouldn't be feeling this bad.
• 33:16
  I don't need support.
• 33:17
  I can't ask for support because I'm not the person who has cancer.
• 33:20
  And actually, that's not true.
• 33:21
  So we at Shine run a specific program for the partners of young adults with incurable cancer, for example, because that's a really difficult place to be.
• 33:29
  But I think the guilt for both sets of people, whether you've got cancer or the people that are kind of looking after you, is very real.
• 33:37
  And it's tough, right?
• 33:38
  Because for the people that are in our age group, like in 20s, 30s and 40s, you're kind of used to looking after yourself and going out and doing things on your own.
• 33:47
  Or, you know, like Christian, you're kind of in university and you're looking forward to jobs and traveling and all that kind of stuff.
• 33:53
  And then all of a sudden you can't do that.
• 33:55
  And to have that taken away from you, that rug pulled out from under you, is really difficult.
• 33:59
  It sets you back and does change the dynamics of your relationships.
• 34:04
  Because all of a sudden you're the person who needs looking after and you're sick.
• 34:09
  And again, that's not where you ever thought you would be.
• 34:11
  Yeah. And we also have a Shine camp that family members come along to so they can have their own side chats with other people, kind of going through the shifts, the differences and getting some support.
• 34:29
  They're kind of the same way normalizing it.
• 34:32
  Right. So they because when they they're talking to their friends, they also have that same thing of, well, they're neutropenic, for example.
• 34:40
  And then their friend's going, well, or is someone going, yeah, yeah, been there.
• 34:45
  Christian, you gave such a good example of something like really practical that gave you a bit of ease.
• 34:52
  I'd love to hear some other things that that you found useful or that like you wish that you had found a little bit sooner.
• 35:01
  Is this something that, yeah.
• 35:03
  I and I see most people will have no idea what they're getting themselves into.
• 35:08
  They won't know what sort of pains you can experience.
• 35:11
  You don't know what sort of fatigue you're going to feel.
• 35:15
  Stuff like gas. That was like one of the biggest things for me.
• 35:19
  It was like eating and it's just you just feel like you need to burp all the time.
• 35:23
  And it's and it's it's uncomfortable.
• 35:26
  But I found Reddit forums, there was a lymphoma Reddit forum that there were just sort of people going through similar sort of things that I was going through.
• 35:35
  And it kind of just puts your mind at ease that like, yeah, this is part of the journey.
• 35:39
  This is normal. And I guess when you're getting a new symptom, if you know someone else has gone through it, who's having the same chemo, it kind of makes you less worried.
• 35:51
  I think that looking for stories, looking for like, is it just me, especially when you're in hospital and it's the middle of the night?
• 35:58
  I imagine that, you know, there are some long nights in hospital that having those those points of connection and kind of on our shine page, we have our experiences.
• 36:10
  Can you tell us a little bit about that? If someone's like looking for stories, where would they go?
• 36:16
  One of the things that Emma and I really wanted to do when we sat showing up was to try to ensure that people never felt as lonely as we did.
• 36:24
  And so though we have a personal experiences page on the website, and we'd love to have as many experiences as we can, because I found them super valuable when I was going through it.
• 36:37
  And I think finding somebody who has the same, had the same chemo as me was something, you know, it was really, really important.
• 36:45
  And actually, I had quite a weird type of chemotherapy because it was high dose chemotherapy that didn't have a stem cell transplant.
• 36:51
  And if I ever see online anyone who has that treatment, I'll message them because I want them to know that, you know, I'm still alive.
• 36:59
  And, you know, it can work because I think it's really tough.
• 37:02
  So yeah, we've got those. And obviously, through our programs, you can meet other people who even if they don't have the same cancer, they might have a similar experience.
• 37:09
  But I would say the one thing that I got a lot of, which I really at the end didn't want any more of was like body lotion.
• 37:16
  People really think that when, I don't know if it's a female thing, but everybody really felt like I needed body lotion.
• 37:23
  And like it was done with the best of intentions, but literally finished chemotherapy with like 30 bottles of body lotion.
• 37:31
  So maybe don't do that. You can get something else.
• 37:34
  Yeah, yeah. Christian, you have done the reset program with Shine.
• 37:41
  And am I right in thinking that you joined some of the sessions from treatment or from hospital?
• 37:48
  I think it was January 24. So I think I either just found out I'd relapsed or found out I relapsed during the reset program.
• 37:57
  I think it was the last couple, actually, I was in hospital for. I only missed one of them because I think it was just as things were getting a bit dicey.
• 38:06
  But I think I came for most of them. But yeah, no, it was it was really good, really good to jump on.
• 38:13
  And actually, funnily enough, I recently sent a message on that chat and the responses I got were incredible.
• 38:20
  I sent a little something we did during the sessions where you looked at pictures and you said, which of these things were you?
• 38:29
  And it's a giant inflatable duck that they put across like rivers and stuff.
• 38:34
  And it's in various stages of inflated and not inflated.
• 38:43
  And, you know, I got some really lovely responses from that talking to them.
• 38:46
  But you were saying about people that, you know, that you'd speak to that have got the same cancer as you.
• 38:52
  Julia, who was on that course, either had, I think it was AML or ARL, I can't quite remember.
• 38:59
  The only way I can describe it is you get like a fizzy feeling, you know, when you when you meet someone that's got the same cancer as you.
• 39:05
  And that lovely lady on a different cancer retreat, Kat, who had AML.
• 39:11
  And, you know, it is that moment of just bang.
• 39:15
  OK, I can actually really talk to like a lot of talking to people with cancer is the shared experiences and the differences between us kind of thing.
• 39:23
  You know, everyone's got a different mode of treatment, that kind of thing, even in blood cancers.
• 39:29
  But then talking to someone that's had the exact same treatment as you, it's sort of like a next level of back and forth that you get with them.
• 39:36
  And it's really amazing. I love that description, that fizzy feeling.
• 39:42
  It seems really funny to be excited to meet someone with the same cancer that you have.
• 39:47
  But you're like, oh, yeah, you've had this horrible treatment that I've had.
• 39:53
  Yeah, it's like you wouldn't wish it on anyone else.
• 39:56
  Since you've had it. Yes.
• 39:58
  Thank you so much to all of you for being on this episode.
• 40:03
  The things that have helped from cooling towels to staying in contact with family, but also having that ability to be like sometimes might just drop an exhaustion halfway through a sentence.
• 40:19
  Reddit forums to finding other people to joining a program, even if you're not at home, even if you're in hospital, finding other people to get that fizzy feeling and and no more body lotion.
• 40:36
  I feel like someone's going to email me now and say you gave me body lotion.
• 40:41
  The smell thing is really funny.
• 40:46
  So like during times of neutropenic, my family were like super on making sure everything's clean.
• 40:53
  So clean now wipes is my thing.
• 40:55
  If I smell with clean now wipe, I'm like, no, get it away from me.
• 40:58
  Oh, yeah.
• 40:59
  Absolute trigger.
• 41:03
  Thank you to all of you and to all of you listening to.
• 41:08
  Thank you to radio facilities for sponsoring our podcast.
• 41:11
  And if you'd like to find out, you're like, where are these programs?
• 41:14
  What is this camp?
• 41:15
  What is reset?
• 41:16
  You're finding out about lots of things.
• 41:18
  Go to shine.
• 41:19
  Cancer support.
• 41:20
  Oh, RG.
• 41:22
  Thank you to all of my guests.
• 41:24
  It was really lovely to have you all on.
• 41:26
  Until next time.
• 41:28
  Bye.
• 41:33
  Not your grandma's cancer show.
• 41:38
  Bye.